Special Insights

A great program

2009-11-10T12:02:00.001-08:00

Okay, so this post has nothing to do with having a kid with special needs. But, actually, it kind of does - for me anyway. For just over the past year, I've been keeping my spanish language skills semi-brushed up by attending a community spanish class once a week offerred by a local latino advocacy group, LACA, or Latino Advocacy in Community Affairs. I attend the advanced class, which has been an intimate group of students from different backgrounds and ages. The best part - it's completely affordable. A comparative conversation class offerred through the university would cost over $900 a semester, plus the cost of books and parking. A 10 week class through LACA is only $154 if a student enrolls early. Although it's difficult for me to shed my "mommy" persona and gather the energy to go to class some weeks, it's been a valuable remnant of my previous life that I can keep.

I won't be re-enrolling in class for the next session which starts in January (for reasons I'll explain some other time), but I got some disturbing news from the director of LACA with the enrollment packet for that session. In a letter to students, she wrote:

"Awhile before the recession hit officially, almost all of LACA's company clients dropped their contracts. I have been working with Small Business Development Center and the Business Office Initiatives Womens Center to go back to basic business concepts and re-focus on strategic planning and marketing.We have been struggling to keep the program going. It will take a good balance of company contracts and individual students paying for courses in order to get LACA back on its feet.So I am working very hard to re-think all the business we do, offer the best, unique programs and get the word out to the community. It will take a great deal of effort to also market to companies and obtain new contracts.I thought you should know where LACA stands - that although it is a small business, relatively new (just 8 yrs old), it is not profitable at this time. Every year we just break even.If you are enjoying class and learning, please help spread the word amongst your family members, friends and co-workers! It goes a long way!"

That's what I'm hoping to do here. So, if you are or know someone who wants an affordable, low-stress way to learn or maintain their spanish skills in the Indianapolis area, please consider taking a class through LACA. I promise you won't regret it! Their website is: http://www.lacainc.com/ Tell Brenda I sent you!

Where are the parents?

2009-08-21T04:43:00.000-07:00

I saw this essay on a listserv and love, love, love it. Many of you may have already seen it but I hadn’t, and after our experience this last month in the hospital following Kaia’s surgery, I could really relate to this article.

By Sue Stuyvesant, Parent

Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.

How important is breastfeeding?

2009-08-01T16:01:00.001-07:00

Pretty important, according to the World Health Organization. In this article, http://news.yahoo.com/s/nm/20090731/hl_nm/us_un_mothers_1, a WHO spokesperson says that "Raising to 90 percent the global breastfeeding rate for infants to six months would save an estimated 13 percent of the 10 million under-age-5 deaths a year". Wow! That's huge. If you don't want to do the math, that's 1.3 million children's lives each year.

Articles like this are inspiring to me and help me realize how important what I've done and continue to do is for Kaia. Yep, you guessed it: she's still breastfeeding. Past two and still breastfeeding.

She loves it and so do I. And I know that I'm doing the best thing for her. Especially during chemo. So if you've got an opinion about how breastfeeding a toddler or God forbid, tandem nursing a baby and toddler, may make you uncomfortable, I really don't want to hear it. I'm more than happy to direct you to articles like the above to drive home the point that breastfeeding is the healthiest, sanest option for feeding a baby, and yes, even a toddler.

I really don't mean to sound defensive about this issue, but it is one very close to my heart and I just want equal airtime for the benefits of nursing.

1.3 million lives. That's pretty convincing.

Up all night

2009-06-10T01:07:00.000-07:00

Paul’s coworkers are an amazing group of people. When they heard about Kaia’s newest diagnosis of cancer, they got together and bought her a bunch of hats (for when she loses her hair from the chemo), toys (for those chemo and doctor visits), and a couple of the hugest stuffed animals.

One was a giant stuffed Minnie Mouse. It’s as tall as Kaia. Kaia wasn’t too interested in her at first. Our living room is getting overtaken by her toys so I decided to put some stuff up in her room, including Minnie. I put Minnie with a couple other large stuffed animals right by the crib.

That night it took Kaia an extra long time to go to sleep. We still use a baby moniter and I heard her awake, cooing, making happy squeals and noises all night long. I don’t think she slept more than a couple hours. I didn’t go to her because she wasn’t fussing, but I tried to figure out why she was up.

Could it be the sleep disturbances so common with her syndrome finally manifesting? Could it be the side effects of the chemo keeping her up? Maybe she’s constipated and just can’t sleep.

The next day she fell asleep quickly for her nap and slept a good solid two hours – a great nap for her. Not a surprise after being awake practically all night long. At the end of her nap, I heard her awakening and making the same excited squeals and coos as the night before. As I cracked the door to get her, I saw her stretched out in the crib on her belly, both hands and arms completely extended through the crib rails, reaching out and playing with Minnie.

Aha! That’s why she was up all night. She was just having a party with Minnie all night!

Minnie is no longer a resident in Kaia's room. She has moved to the hall outside Kaia's door, and Kaia very happily greets Minnie each morning and after waking from her nap with hugs and squeals.

And all sleep order is restored in our house.

Two little girls

2009-06-09T12:19:00.000-07:00

I know it’s been a while since I last posted an update. I won’t be doing that today – I don’t have the time or energy. I just wanted to share the cutest picture. This is Kaia a month before she turns two and her Great Grandma Alice when she was two years old. Kaia is named in part for Great Grandma Alice and also for her Grandma Linda. We selected the common letters in their names to form Kaia’s middle name: Li. Kaia also shares something else in common with her Great Grandma Alice – her birthday. Both were born on June 22nd, 90 years apart. We had a lot of fun getting Kaia ready for this picture. It was her Grandma Linda’s brainchild and the result is stunning. Kaia will hopefully get to see her Great Grandma Alice again in July, when her Uncle Dave gets married in Minnesota. Oh, and the dress that Kaia is wearing in the picture was a gift from a very generous friend from my cp mom's group - Thanks Lynn!

Reeling

2009-05-17T15:21:00.000-07:00

It was another full week. I used to think that our life was full – with so many therapies each week and the doctor visits that Kaia required. Right now I’m just spinning. Here’s the update on what we found out this last week:

I couldn’t wait until last Tuesday so I called the surgeon’s office Monday afternoon to check to see if they had the results of the biopsy. They had received them early that morning. Their hunch was right: the final pathology report showed that Kaia does indeed have Wilms Tumor. The surgeon told me he had spoken with the oncologist that morning and that they would be calling me later the same day.

They didn’t call Monday so I called them Tuesday morning and the oncologist finally called me back late Tuesday afternoon. She was more than willing to talk with me over the phone and also had us set up the next day for several tests and an appointment with her. Kaia was scheduled for a sedated CT chest scan on Wednesday but when the nurse called to ask the pre-sedation questions and I told her that Kaia still had her cold from the prior week, she didn’t think that they would be comfortable doing it. She said they were canceling that test.

Wednesday we spent the whole day at the new-to-us childrens hospital. We were in the building for over 9 hours. Kaia had an EKG, an echocardiogram, a chest xray, and a did end up having the chest CT scan. They wanted to make sure the tumors haven't metastasized (they haven't, which is good news) and get baseline heart studies since some of the chemo agents can damage the heart. They ended up thinking Kaia was okay to be sedated for the chest CT, but she had already breastfed upon awakening that morning, so she had to wait 6 hours before she could be sedated. I do get frustrated and don’t know how we are supposed to keep Kaia gaining weight when they are constantly restriciting her food intake in preparation for procedures. Kaia couldn’t eat that day until 4pm. She also had more bloodwork and another urine test and we met with the oncologist there. Needless to say, it was a very long day.

The oncologist at the new children’s hospital’s plan is for Kaia to have surgery next week to place a port, and potentially get ear tubes and an unconcious hearing test (which we've been trying to coordinate for awhile now). They want her to start the first round of chemo immediately following the surgery, but we still haven't committed to anything in our minds or signed the consent. We just let them schedule it so that it's available if we decide to go down that road.

After six weeks of chemo, they want to scan the kidney to check for tumor shrinkage, and do a partial nephrectomy to remove the tumors if they feel it is safe to do so. The danger is damaging the kidney, which the doctor said is a significant chance with Kaia’s situation. That’s the scary part of all this. But surgery is the definitive treatment for Wilms, and without it, the tumors will likely regrow. Without chemo, they could continue to grow, burst the kidney, obviously impair renal function, and metastasize. Uggh. Just thinking about it makes me sick to my stomach.

Thursday we had a bit of normalcy as she went to horse therapy and had OT right afterward. I just realized reading that sentence how funny that sounded - 2 therapies in a day is what is normal for us! Kaia had an awesome session on the horse and is getting more and more interactive with the therapists and other kids there. It brings so much joy to my heart to watch her there. She looked so big when they had her standing while riding the horse.

Friday morning we were planning to leave for the regional conference in Ohio for her syndrome. We really just needed to get away from all the doctors, hospitals, and cancer stuff for a couple days.

But, I started to have second thoughts about going to the conference. Thursday evening arrived, we hadn’t even started packing, and I felt overwhelmed by the thought of having to do more “stuff”. I also didn’t want to spend the whole weekend talking about this new challenge and explaining the whole timeline, treatment options, and what this means for Kaia. That’s why I’ve directed selected family and friends to this blog. I just can’t keep repeating this information over and over again. It saps my energy and siphons even more time to thinking about cancer. Add to all that, I was feeling really rundown because I haven’t been sleeping well all week and hadn’t gotten more than 5 hours a sleep each night, and I felt like I was coming down with a cold. The whole trip/event started to seem less and less appealing. We had our respite provider Thursday evening because we were planning on packing, but we decided to go out for a quick dinner and together felt like it was best to make things less stressful on ourselves and stay home. I just feel so vulnerable, so stressed right now. My instinct is to circle the wagons and give ourselves time to absorb everything, let the feelings sink in, and make some decisions. This is our new reality, and it still seems surreal to me.

That night, at 11pm mind you, another parent organizing the event called to verify we were still coming. First of all, who does those kind of calls at 11pm? She is in the same time zone as us, so she definitely knew what time it was. Then, when I explained what was happening with Kaia, and why we wouldn’t be attending, she started pressuring me to still attend. She said, “Who better to understand what you are going through than your 22q family?” That comment struck me. I know these people get the 22q13 thing. All of them have a child with the syndrome. Most of their kids are older and they are veterans with it. But kidney cancer? Give me a break. How could they understand? None of their kids have it. Just like the cleft lip and palate, Kaia is the only documented kiddo with 22q13 that also has kidney cancer. I understood what this lady was saying about garnering support in a tough time, but I couldn’t help feeling like it was more important to her that the attendance was good for her event than listening to what I was saying about needing some time at home with my family to absorb this new diagnosis.

We also knew we wanted to go back to the original childrens hospital (heretofore CH1) with all the new studies and see if their treatment recommendation would be any different. Since we were planning to leave Friday morning, we had set up an appointment for next Tuesday with the oncologist at CH1, but I felt like that wouldn’t give us enough time to process any differences in treatment plans and make a decision in enough time to reasonably cancel the procedures at CH2 and set up treatment at CH1 if we decided to go that route. So we called Friday morning and they were able to accommodate us with an appointment that morning. The last thing I wanted to do was to go to another hospital or see another doctor but I wasn’t going to feel good if we didn’t consider all our options and have adequate time to do so.

Surprisingly, or not so surprisingly, their recommendations were indeed different. I’m starting to appreciate how vastly different doctors can be in their approaches to treatment. CH2 took a very reasonable, measured approach to the treatment they recommended. CH1, in contrast, staged Kaia’s cancer further (Stage 3 as opposed to Stage 1 or 2), and therefore recommended a more aggressive, longer course of treatment. That variability in staging shouldn’t exist but since Kaia only has the one kidney and they can’t do surgery to remove it initially, some clinical opinion is involved. I wasn’t surprised that CH1 was more aggressive, considering how they approached the biopsy compared to CH2.

Now we have some decisions to make. Tough decisions. Decisions about what extent of treatment to pursue and where to have it done. There are advantages and disadvantages for us in each facility. What we need to figure out is which one will be the best one for Kaia and for us over the next several months. We’re also considering an a la carte approach – chemotherapy at one, surgeries at the other. That would make things slightly more complicated, but it may be the best for Kaia. I also know we have the choice as the healthcare consumer to change providers at any time. Paul commented how lucky we are to have two excellent facilities in town between which to choose.

Since so many people have asked what Wilms Tumors are, I’ve posted a new link on the right hand side of the blog to the National Cancer Institute info page on Wilms. It has some general info and some links for more detailed info regarding staging and treatment.

I’m glad now that we chose to stay home this weekend. As of Sunday morning, I have a raging cold that kept me up much of the night last night. That wouldn’t have been fun for any of us staying in a hotel and sharing the room with Kaia. Yesterday, though, we took Kaia to the zoo which is always a great time for her and us, and utilized our respite provider in the evening to go on a date.

I have to say that I have felt incredibly supported at times this week. I want to thank everyone who sent positive thoughts, prayers, emails, phone calls, and offers of help. I really appreciate so much knowing that you all are there. It has kept me uplifted during an otherwise rough week.

I've noticed that it is harder for some people when we tell them the diagnosis. They don't know what to say and I can sense how uncomfortable it is for them. Paul even said how he felt sorry for them. You can see the shocked look in their eyes. They are speechless. I understand that. But it's nice when someone reaches out instead of backing away because they're uncomfortable.

It’s a week of decisions ahead and once again I’m going to ask for your thoughts and prayers for us to make the right decisions for Kaia and for strength to get through all this. We’ll keep you updated.

Another day, another doctor (this is a long one)

2009-05-10T08:30:00.000-07:00

Last Monday we saw the pediatric surgeon and oncologist. The update on the masses in her kidney is as follows: April 24th Kaia had a CT scan. The hospital, not surprisingly, could not coordinate the ear tube surgery and ABR hearing test so she just had the CT scan. They still had to sedate her, but it was “conscious sedation” versus full-on anesthesia which was supposed to be much a lighter level of sedation. We were both with her the entire time. It was really hard watching her little body go into the CT machine. She was “drunk” the whole day Friday from the sedation wearing off.

I had a doctor’s appointment for myself scheduled for later that morning and I was planning to cancel it. However, I thought, what better day to keep her strapped in the stroller than today? Normally I don’t like to keep her restrained when she could be practicing moving her body. But that day she was so impaired. She literally was like a drunk getting behind the wheel that just doesn’t realize how impaired they are. She would try to stand up from the floor and walk and would start keeling over and couldn’t understand why her body wasn’t working the way she wanted. It was dangerous for her and stressful for me. So, I strapped her in the stroller, and I went to my appointment and got that out of the way.

That night we also had a parents night out scheduled, which we were going to cancel because Kaia was still so unsteady on her feet. We realized that most of the time they hold her anyway. She’d be safe and there was no real reason not to go. And we really needed a night for us after the day we’d had. We dropped Kaia off and went back out to the car, which now suddenly wouldn’t start. No warning signs before of hesitant starting. Nothing at all previously to indicate that anything might be wrong. Completely out of the blue it just wouldn’t start.

By some lucky twist, we had jumper cables in the trunk and another nice parent gave us a jump. Thankfully Sam's Club was close by and open, so we spent our date night in the parking lot at Sams Club, Paul’s changing of the battery aided by the helpful cashier’s offer of a wrench loan. If it had to happen, it was actually a good thing that it happened when it wasn’t Kaia and I alone in the car, and that it happened on a night when we had time to deal with it and weren’t in a rush to get somewhere. Even after changing the battery, we still had time for a quick dinner before picking up Kaia, who, as it turned out, had a fine evening as well.

We didn’t hear back from Dr Kidney until right before leaving for the parents night out (after much pestering of his office). He informed us that they saw multiple masses in her good kidney with the CT. They didn’t look like anything he had seen before. His initial reaction was that he recommended a biopsy but since he was on his way to a kidney conference he was going to ask a few other docs there what they thought. He also asked the most ridiculous question – “Does she have any other medical issues?” I was like, “well, you know she has this syndrome…22q13 syndrome…yes it affects the kidneys…”, etc. Unbelievable. You’d think he’d look at her chart before he called us, right? Anyway, he asked if this was common with her syndrome. I immediately jumped on the parents’ message board for her syndrome and searched for any kidney issues besides multicystic kidneys. Hydronephrosis, reflux, and multicystic kidney are all reported. But nothing else. So I posted a question specific to the masses and also emailed the researcher after whom Kaia’s syndrome is named and asked if she knew if any kidney masses had been reported with the syndrome. I copied Dr Kidney in on the email as well as her developmental pediatrician. Dr Kidney told us he’d get back to us early the next week. Dr Development had nothing to add.

Monday came and went. Tuesday came and went. Wednesday came and went. Normally I’d be on the phone hounding a doc who didn’t get back to us. But I really wanted to give him time to check all the resources on his end. And, it was all too easy to ignore this. I don’t really want to think about it being anything serious. I knew the options were to wait and watch the masses or biopsy. Scary thoughts if a biopsy came back malignant because she only has the one good kidney.

Kaia had an appointment Thursday morning with her developmental pediatrician. We asked him if he could be a resource for us in coordinating situations like the one last week with the ear tubes and CT. He agreed that was his role. Kaia’s got so many issues that someone needs to be quarterbacking her care. Someone on the inside of the system. Because no matter how loud I scream, none of these people hear. He left the room and immediately started making phone calls. He was already aware of the kidney situation because I had copied him in on the email I had sent Dr. Researcher regarding if any other kids with the syndrome had experienced these types of kidney masses. He just thought that Dr Kidney was following up on it. He coordinated an appointment for us with the oncologist and surgeon. I realized after speaking with him that we may have questions for Dr Kidney too when we met with these other doctors. However, the magic contact was gone. I was now stuck again with the nurses and once again, was given the run around: “No, their office (the other doc’s) needs to be the one coordinating this”, they emphatically stated. Messages were left, no phone calls returned and a repeat of the week with the ear tubes commenced. I’m so done. I know if we want anything done we need to speak directly with the doc and have him do the legwork. I am so sick of this hospital. I can’t believe that all hospitals treat patients and parents this way. There is only one other option in Indianapolis - another children’s hospital that may or may not be better. Indiana just seems to have such an inbred/nepotistic population of medical professionals. Most are trained instate (who would actually want to move here to practice medicine, after all?), they all know each other, and seem to have the same attitude and training regarding patient care. I don’t hold much hope that the other hospital would be much better.

The bottom line is that Kaia saw the surgeon and oncologist Monday. I had been planning on going to a new support group meeting that meets once a month on the first Monday morning of the month. I had one-on-one childcare set up at the meeting for Kaia and I was really excited to go. I felt a little resentful that the appointment meant we couldn’t attend the meeting. However, we both really wanted to hear the doctors’ opinions and recommendations. I was very nervous about what they might say but I was trying to go into it open to receive all the info and get our questions answered. All this just seemed so unfair. I couldn’t even think farther ahead than the next day.

We saw the surgeon first and he was pretty wishy-washy about whether a needle biopsy would be possible. He recommended a laparoscopic biopsy. That is pretty major surgery. She’d need two weeks to recover – couldn’t do any therapies. Then we saw the oncologist who also was wishy-washy but consulted with the surgeon and together they solidified their recommendation for the laparoscopic biopsy. They felt it would give them the best possibility of obtaining an adequate tissue sample and they didn’t want to assume that all the tumors were the same. Since there are two large tumors and several smaller ones, they wanted to at least surgically biopsy the two larger masses and maybe even some of the smaller ones. We were concerned about Kaia’s recovery and possible impact on her kidney function. I also felt that it was excessive to biopsy so much and didn’t agree that we couldn’t assume they were all the same. We were pretty overwhelmed with everything that day, though.

They also drew Kaia’s blood and wanted to get a urine sample. So they placed a couple pieces of gauze in her diaper and we had to walk around and wait for her to urinate so they could get a sample. It was afternoon by that point and we waited until 1:45pm. Kaia hadn’t urinated by that point, I was completely sick of the hospital, and I really wanted to get her home for her nap so that she would take a decent nap and I’d get a little break. I asked if we could just put the wet gauze in a Ziploc and Paul would bring it in the next day. They really didn’t want to let us leave but finally relented and gave me the syringes and a vial to extract the urine from the gauze. Of course Kaia fell asleep on the way home but got a decent nap anyway.

Also, while waiting for the phlebotomist to draw her blood they had sent us to the general waiting area but then came back to get us and asked us to wait in their waiting area. We were a little confused but did so. After they had shut the door, they explained that the other kids in the general waiting area were being tested for a virus. They didn’t say what it was but I was even more paranoid about how in the world we were supposed to keep Kaia healthy in these germ-laden environments. We wash and we wash her and our hands. We use hand sanitizer at every turn.

That night the questions about why they couldn’t do the less invasive needle biopsy kept percolating in my brain. The next morning I called Kaia’s pediatrician and he agreed that it was a rational plan to biopsy by needle and that they should be able to do that. In fact, he felt like considering everything, it was the best thing for Kaia. What if these turned out to be benign? To put her through that invasive of a procedure to find that out when we could’ve done it an easier, less invasive way? Meanwhile, the surgeon’s office was calling us, pushing us to schedule the laparoscopic biopsy. I told them we still had additional questions and I called the oncologist to speak with her about it again. The whole day I was off and on the phone with them about it. She finally called late in the day to say that everyone there – the surgeon, herself, the pediatric and interventional radiologists, felt that a laparoscopic biopsy was the best course and beyond that, the interventional radiologist refused to do a needle biopsy. He felt that in order to obtain adequate tissue he would need to stick her multiple times and she’d be at increased risk for bleeding. Again they pushed us to schedule the surgical biopsy. I was beyond feeling pressured and fed up at that point. I couldn’t help feeling like these people just saw my daughter as a great health insurance package and wanted to do as many things to her as possible to make the most money possible. Encouraged by Kaia’s pediatrician earlier that day, I told them we’d be pursuing a 2nd opinion.

So Kaia’s pediatrician directed us to a surgeon at the other children’s hospital in town. No magical patient relations there either. I couldn’t make the appointment, I was very condescendingly told. The referring doc had to do it. I called the pediatrician’s office (again), who called the surgeon’s office to make the appointment and we were scheduled to see the surgeon the following Tuesday, a week away. Since this was such an urgent matter for the docs at the other hospital, I called (now that Kaia had an appointment made by the pediatrician’s office, they would actually talk to me) and begged for an earlier appointment. I called at least 4 more times. Finally they called me back Wednesday at 1:30pm and said that the original surgeon couldn’t see her but another one was available and how soon could we be there? Kaia needed to be changed and nursed (and would probably fall asleep for her nap as was usual). I still needed to get presentable to leave the house, and Paul still had to pick up the CD of the scans from the other hospital and meet us at the new one. Talk about rushed. We got there at 3pm.

This doc seemed very optimistic that not only could they do the needle biopsy, he agreed that in light of everything, it was the best course for Kaia. Wow – a surgeon that actually wouldn’t do surgery because it was the best thing for the patient not to do it? Astounding. Fortified with hope, we left him so that he could consult with that hospital’s oncologist and to do some more research before coming to a final recommendation for us. This doc also seemed more up to date on the current research/protocols for treatment, or maybe he just actually considered other options and did a better job communicating these to us.

The next day he called and said that they were pretty confident that this was Wilms Tumours. They did indeed recommend a needle biopsy as opposed to laparoscopic biopsy, and in direct contrast with the other hospital, they were not only confident that they could get adequate tissue for a diagnosis, but that they would only have to biopsy one tumor. Due to the tumor location, they were also confident that they could so by insertion through Kaia’s back, thereby avoiding the peritoneal cavity. Biopsying through the peritoneal cavity would change the staging if it indeed is cancer and would mean not only chemotherapy but also radiation. They had a slot the next day on Friday and we took it. This was all happening so fast but I was so glad that I stuck to my guns and had pursued a 2nd opinion. I was still nervous about the general anesthesia but we knew that we wanted to find out what the masses were.

We received the preop registration call from the hospital. We got at least 3 different preop instructions regarding npo/clear fluid timeline restrictions. The biopsy was scheduled for 11am. The first instruction was that I could breastfeed Kaia until 8am. The 2nd was until 5am. The last was nothing by mouth after midnight. The first 2 instructions were from dr’s. The last was from the assistant that did scheduling. She said that babies under 12 months could have breastmilk up to 6 hours before but since Kaia was 22 months she couldn’t have anything after midnight. She kept asking how old Kaia was and repeating that it was breastmilk. I’m sort of starting to feel the toddler breastfeeding discrimination here.

Wouldn’t you know it – Kaia hasn’t had a cold for months now and came down with one Thursday night. I think Paul thought I was making it up because I was so afraid of the general anesthesia, but sure enough when she got up on Friday morning she was sneezing and had a runny nose. Not too surprising after where we had spent the whole week – in hospitals and doctors’ offices. I called the hospital and they told us to bring her in since she didn’t have a fever and that the anesthesiologist would examine her to determine if it was safe to proceed with anesthesia.

The anesthesiologist felt that it was safe to proceed. It was a quick procedure. The radiologist was a little flippant and couldn’t even remember Kaia’s name when he called to tell us he was done and that she was going to recovery. He said they’d be calling us to “let us know when you can go see (long silence) um…your kid.” It would be nice if the doc’s could remember her name but we both agreed we really didn’t care as long as he did a good job in the OR. He said the pathologist’s preliminary report was that it was Wilms Tumour.

By now we knew this is the most common form of renal cancer in children under age 6. It is highly treatable but the standard treatment is removal of the affected kidney followed by chemo. Normally that’s how they do the biopsy too. Since most kids have 2 kidneys, they remove the whole thing, biopsy it, and if it is cancer, there’s no chance of tumor spillage like there is with a needle or laparoscopic biopsy. Since Kaia only has the one functional kidney, that wasn’t an option.

They kept Kaia for 4 hours from the time she woke up for observation since she had a bad experience after the cleft surgery. The good thing was I was able to nurse her immediately when she woke up in the recovery room. They are such Nazis about starting on clear liquids but we had a great nurse in the recovery room who said go ahead to nurse and I was so glad once again that I am still nursing her. She was so comforted by it and nursed off and on the whole time. She was very alert for a while and then fell asleep nursing for a very nice nap.

She was asleep in my arms and my back started to hurt from sitting in that position. It felt sort of like we were on a plane, with her as a lap child, and I was stuck because she had nursed to sleep and if I moved I would wake her. I also started to feel as if the little curtained-off private room area we were in was a prison of sorts. We couldn’t leave. I just wanted to go home. I wanted her IV out, those hospital pj’s off her, and the ambient noise of the hospital to stop. I just hate hospitals. It’s as if time stands still there. It goes in some deep black hole and you can never get it back. It’s like time limbo.

But I took the opportunity to read and actually finally finished El alquimista, the book for my Spanish class that ended on Tuesday. A new session restarts this Tuesday and it’s through a local organization so I don’t receive a grade or anything like that, but it was still bothering me that I hadn’t even found time to finish the book. I get frustrated that I can’t devote the time I’d like to outside of class to studying, reading, and writing.

The one very noticeable difference about the new hospital was how they were obviously more used to caring for kids with special needs. I must have heard the words “g-tube” more times on Friday than I have in my whole life. No one assumed that Kaia could do things that are developmentally appropriate for her age. In fact, they assumed the opposite. We had to ask the nurse who was weighing her if it was okay for Kaia to stand on the scale instead of sitting. And no one assumed that she could walk. I wouldn’t say they were surprised that she could, they just didn’t expect it. That aspect of things was so different. It was refreshing.

And Kaia, well, she actually did better after the anesthesia for the biopsy than she did after the sedation for the CT scan. The anesthesiologist said the agents he used were faster acting. She was totally alert and playing like normal Friday evening. I had such a feeling of relief leaving the hospital and being home with her and Paul that evening. The joy of just being home and having her happy was almost more than I could imagine.

Back to the biopsy itself. I feel so vindicated in our decision to have the needle biopsy rather than the laparoscopic procedure. I hope that if it is cancer, this procedure doesn’t put her at increased risk for metastasis, but the only other options were to treat it like cancer without biopsying it at all, not do anything and just watch it, or proceed with the laparocopic biopsy which would’ve advanced the staging further.

The pathologist will complete the final report by Tuesday. I truly hope they do a thorough job with the tissue that they do have and perform all the tests and stainings in order to rule out anything else. I hope their suspicion that this is Wilms doesn’t hamper a thorough examination of the tissue.

If the final report agrees with the preliminary report, we plan to meet with an oncologist from the new hospital next week and go from there. If it all sounds like a lot, it is. It is overwhelming, yet we are dealing.

I just was not ready for this. Sometimes it seems like nothing is easy with Kaia. Even her drinks are difficult. They are a mixture of whole milk yogurt for thickness, carnation instant breakfast, and either breastmilk, whole milk, or half and half if we’re feeling like she really needs the calories. There’s the fact that she’s not chewing yet. Feeding is a struggle – it’s getting better in some ways but still a struggle. There’s the ever-present fear in the back of my mind that if she doesn’t gain weight the doctors are lurking around the corner watching and waiting to put a feeding tube in her. There’s the constant awareness and reminders required to keep her from w-sitting all the time. There’s the fact that she is still unsteady enough on her feet that she can’t wear shorts or dresses without leggings or her knees will be a bloody pulp from falling.

But we knew all those things were possibilities. Even more than possibilities, they were likely. But cancer??? That’s something I wasn’t expecting.

Not to mention I’ve got my own issues with cancer and traditional treatment. I watched my grandmother, my mom’s twin sister, and my mom, all go the route of traditional western cancer treatment and die a slow death. I have and am watching my sister bravely undergo surgery, chemo and radiation. All the while the cancer progresses. I don’t know if I can put my daughter through that. Part of me believes it might be better to just vibrantly embrace and enjoy the life you have and die when the time is up. But if this is something truly treatable, I can’t deny my daughter that treatment. I think we are just both scared that because she only has the one kidney, we’ll put her through all this: another surgery to place a central line, chemo, possibly radiation, and more sedations for scans. Then the docs may tell us that either the chemo isn’t working and they need to do something stronger, or they may want to surgically remove the tumors. I’m scared to death that if they try to that, they will damage her one good kidney irreparably and she’ll be left without a kidney and need dialysis. And all the prior surgeries and chemo, all that pain, will have been for naught. But all we can do is deal with the info we have at the moment and try to make the wisest choice in consideration of everything.

I know it sounds like we have been consumed by doctors, hospitals, and been bogged down by thoughts of what the future might hold. In a lot of ways that is true.

But, in the midst of all this, there have been moments of great joy over the past couple weeks. There was Kaia starting to sign “My turn” – a huge accomplishment for her, her squeal of surprised delight at the first sight of her new tricycle, and her already almost getting that she needs to pedal the wheels to make it go. There was watching her start to interact and initiate contact with the other kids at horse therapy while the therapists write their notes, and seeing her intense curiosity and slow warming to dogs that the neighbors walk down the block. There is her huge smile when she sneezes and she looks to you to say “Bless you”. There is her progress walking quite skillfully now on uneven terrain like the grass instead of just the sidewalk/driveway. None of these doctors or diagnoses can take those joys away.

And, like Paul said, what he took away from the biopsy on Friday was how well Kaia did. How well she bounced back. How it was harder on him that it seemed to be on her. She really is such a strong girl.

I know that if you are still reading this I can count on you for this request: Pray, if that is what you do, for her. Pray for us. Send us positive energy and warm thoughts like rays of sunshine to warm our souls. Because if this is what they think it is, we are going to need it.

Happy Mothers Day!

2009-05-09T11:26:00.001-07:00

Another mom posted the following article, written by Sandy Banks from the Los Angeles Times, on the message board for Kaia's syndrome. I loved it so much I had to share it here.

http://www.latimes.com/news/local/la-me-banks9-2009may09,0,6592590.column?page=1

These moms know true love

Mothers face tough challenges in raising children with disabilities, but there are rewards in the role.

Sandy Banks May 9, 2009

Deedra Williams doesn't need breakfast in bed or a spa massage to celebrate Mother's Day tomorrow.

She received her gift last weekend at a quiet Montecito retreat from 15 women who, like her, are mothers of children with disabilities. They hiked eucalyptus-shaded hills, listened to music and made collages with pictures cut from magazines. They talked for hours about the challenges of mothering children who may never be able to walk or speak, to go off to college or get married.

And everyone knew better than to interrupt, criticize or offer advice.

"No one tried to fix it here," explained Williams, a mother of two sons -- a "developmentally typical" 7-year-old, and a 14-month-old whose newborn jaundice left him with brain damage, hearing loss and cerebral palsy.

"We can relate to what each one is going through because we're all in the same boat," Williams said as we sat at table at La Casa de Maria Retreat with four other mothers.

"What I took away from this weekend," Williams said, "is acceptance."

And what I took away was a new appreciation for the unconditional mother-love that many of us give lip service to, as we continually push our children to improve themselves, carrying around our mental check-list of all their shortcomings.

Raising a disabled child requires a sort of hyper- vigilance. "Motherhood amplified," Nina Loh called it, describing life with her 7-year-old twins -- a "typical" daughter and a son with spina bifida, who has had 13 surgeries and may need more. "The stakes are so high. And there's really no end in sight."

Woodland Hills therapist Diane Simon Smith knows the feeling well. The mother of two disabled sons, she began offering "Healing the Mother's Heart" retreats six years ago, to give women a safe place to vent "the anger, the guilt, the joy . . . all the feelings."

Smith's first child was born weighing less than 2 pounds. He was blind, mentally retarded and was never able to "walk, talk, sit, use his hands or feed himself," she said. He died of pneumonia at 17. His brother, two years younger and now 21, was born with Fragile X Syndrome, an inherited disorder that causes severe cognitive and behavioral problems.

I asked Smith if she felt cheated, robbed of some of the joys of motherhood.

Not cheated, she said, with its implied resentment and bitterness. Just sad, sometimes, "when I hear my friends talking about what their kids are doing . . . going off to college, getting married.

"Every woman around the table talked of feeling isolated, separated from the larger sisterhood of mothers."I never wanted to be different," said Eileen Sunderland, whose 7-year-old son has autism. "I wanted to fit in. . . . But you can't go to lunch with all the moms at preschool. You can't meet them in the park, because you always have a therapy appointment or a doctor visit to get to."

And what do you talk about, anyway, with a mom who complains that her daughter wants pricey True Religion jeans, when you're trying to get your son to stop flapping his hands like wings.

Still, some said their children's diagnosis provided an odd sort of relief -- a validation of a mother's instinct that something was wrong, or a vindication of their parenting.

"I thought I was an inadequate mother," recalled Lisa Hannifin, whose 4 1/2 -year-old son was diagnosed with autism. "I wondered 'Why am I so stressed out? Why can't I take my boy to the market?' Other kids sit in the cart and behave. There must be something very wrong with me."

For others, the verdict triggered fear, panic and disbelief.

When her daughter, now 5, was diagnosed with autism three years ago, Julia Gosnell "was hyperventilating into a paper bag for 10 minutes."

Gosnell had every prenatal test her doctor offered during her pregnancy, "because I did not want a child with a disability," she said. "I really considered myself too selfish. . . . I was a workaholic . . . not really cut out for raising kids."

But children can stretch a mother's boundaries.

Since November, when Gosnell was laid off, she has been a stay-at-home mom. Last week, the child she once feared might not speak said, "Mommy, I want to teach you a magic trick."

Tears spilled down Gosnell's cheeks as she shared the story. "Her progress has been so astounding in the last seven months, and everybody agrees it's because I'm home working with her. . . . I've learned about patience and love and how to give myself to someone else."

And about how important a mother is to her child.

I had to admit on my drive home that I had visited the retreat to turn those moms into an object lesson. I envisioned this column as a reality check for mothers like me -- a "see, it could be worse" reminder to count your blessings this Mother's Day.

But it was their spirit, as much as their stories, that took me down a different path.

The way every description of a child's disabilities also included the strengths their mothers see: The beautiful smile, the sense of humor, the determination, the innocence.

The way they never labeled their other children "normal," just "developing typically."

How much freer would we all be to love if we could let go of our preconceived notions of what our children should do or be? If I worried less about my daughter's tattoo and appreciated her sense of humor more. Or focused less on the "C" in statistics class and more on the hard work she put in to earn even that.

These women are not saints or martyrs. But they see gifts where others might see only hardships.

"Write this column for them," Smith told me, as the mothers packed their cars to head back to their families. They are not looking for pity or praise, just acceptance of their challenges.

"We're not special," she said. "We're just human beings, doing what we do with love."

Just like every other mother.

We're approved!

2009-04-27T12:40:00.000-07:00

For reimbursement from the Family Involvement Fund, that is. The group of families that have kids with 22q13 Deletion Syndrome has a biannual international conference in the even numbered years. We went to that conference in Greenwood, SC last summer. This May a parent near Toledo, OH decided to organize a regional family retreat. We really wanted to go but it seemed a little expensive for a weekend. Mileage (no decent flights from Indy), lodging, and meals all added up just for a weekend.

Then I remembered the Family Involvement Fund. I found out about it last fall. I knew they would cover a conference like last summer’s but I wasn’t sure about a regional family retreat. Unfortunately, we couldn’t get last summer’s conference covered because they operate on a fiscal year and it had already ended by the time I discovered the fund. I did apply for a low muscle tone course that I attended in January and finally received the reimbursement for that course a few weeks ago. That check is actually what reminded me about the fund. I went online, filled out a very easy application, and within 10 days received an approval email for the family retreat next month. We’ll submit receipts for lodging. The mileage and meals are covered at a flat reimbursement rate per mile and per meal respectively. The whole shebang is covered! How exciting! There is a family that lives south of us with a newly diagnosed son close in age to Kaia and I am really hoping they can attend.

So, the next time an educational or support opportunity comes your way regarding your child with special needs, check into the Family Involvement Fund (if you live in Indiana) or see if your state has a similar program. It’s an amazing resource.

Here's a little more info copied directly from the link above:

What is the Family Involvement Fund?
The Family Involvement Fund (FIF) is a reimbursement fund that supports family members of children with disabilities to learn more about their child’s disability and the systems that provide services.
Families may choose to attend conferences, conventions, workshops, public forums or hearings, task force meetings, or other similar activities. Families may also choose to access training and information through online workshops, teleconferences, or webcasts.
In addition, the FIF provides reimbursement for approved purchase of print materials (books, manuals), or other media such as CDs/DVDs, and videos.
Separate funding is also available within the FIF for parents who are asked to participate officially as members on their Local Planning and Coordinating Council (LPCC), its committees, and sponsored activities.

How much is Available from the Family Involvement Fund?
The Family Involvement Fund will reimburse approved applicants up to $250 (for an individual) or $500 (for more than one adult) for the grant year. Awards are per individual or family, not per child. Amounts are subject to change.

What the Family Involvement Fund Does Not Cover
The FIF does not reimburse for therapies or other developmental services, training for specific therapy modalities or academic course work, the purchase of developmental toys, materials, equipment, etc. for specific use by a child or family, and will not reimburse enrolled providers for expenses related to attendance at a training required for credentialing purposes. This fund is not intended for professionals or non-family members to attend trainings on a family’s behalf.

Who Can Apply to the Family Involvement Fund?
The Family Involvement Fund is available to families of children with disabilities, ages birth –through 21 years of age. Family includes parents, siblings, grandparents, and other extended family members, foster parents, legal guardians, and educational surrogate parents.

How do I Apply for the Family Involvement Fund?
You may apply online or print an application from the Family-to-Family website at http://www.inf2f.org/. You may also call or email to request an application form. (See contact information below)

Payer of Last Resort
The Family Involvement Fund is considered a “payer of last resort.” Families are encouraged to seek financial support from other sources before applying to the FIF. Please consider the following:1) Local community service organizations such as Lions Club, Kiwanis, etc.2) The Indiana Governor’s Council for People with Disabilities, Consumer Investment Fund. For information, call 317-232-7700, or go to http://www.in.gov/gpcpd.3) Check conference materials for information on available scholarships.4) Check with local/state disability-related organizations and support groups for information on available scholarships.

Guidelines, Requirements, and Limitations
Attending a Conference
• Should the number of applications for any one conference jeopardize the total funding allotment for families, a cap or other reimbursement restrictions may be instituted.
• Families requesting reimbursement must provide verification of conference attendance with their paperwork.
• Mileage is reimbursed at $.44/mile for 1-500 miles; $.22/mile for 501-3,000 miles; $.0 for over 3,000 miles.
• Reimbursement for meals is a flat rate based on Indiana University guidelines.
Print Materials and Electronic Media• Families are encouraged to first contact our library, the Center for Disability Information & Referral (CeDIR), to determine if the needed materials are available for checkout. (See contact information below)
• Print and electronic materials should be related to a family’s need to understand their child’s disability or special needs and/or the systems that provide services, such as early intervention or special education.
• FIF cannot reimburse for materials purchased for individual child-use such as flash cards, children’s books or videos/DVDs, toys, etc.

Timelines and Procedures
• Applications should be submitted at least 30 days prior to the date of the event.
• Upon approval, you will receive a letter and the forms you will need to fill out and return after the event.
• The FIF will reimburse actual expenses and requires you to submit original receipts.
• If your application is determined to be outside the use of this fund, you will receive a letter of explanation.

Unnecessary medical procedures?

2009-04-20T21:47:00.000-07:00

Antibiotics, podiatric surgery, evt’s, oh my! (to the tune of Lions and tigers and bears, oh my!, From the Wizard of Oz)

A mass. That’s what they saw in Kaia’s kidney today. In her good kidney. Yeah, it was a little scary. But I really wasn’t surprised. I was prepared to hear something like that. Don’t ask me why. I just get these feelings about things. Right now the doc doesn’t know what the mass is. It’s too difficult, daresay impossible, to discern from an ultrasound (the procedure Kaia had today) the difference between blood or a mass. It may be a hemorrhagic cyst or a neoplasm (type of cancer). I really haven’t thought that far ahead yet and I don’t want to. It may be nothing and hopefully that’s the case.

We are supposed to go back within the week for her to have a renal CT. They would’ve fitted Kaia in for a CT this afternoon but couldn’t do it until 4pm. She had to wait until then because the eating restrictions (nothing po 6 hours prior) due to the procedure requiring sedation. Because we found out that she was going to have to undergo sedation we decided to revisit the subject of evt’s (ear vent tubes) – something we’ve been struggling with making a decision about for a few months now. We thought, why not try to include evt’s and an ABR (auditory brainstem response) hearing test while she was under and do it all at once?

I actually started the following blog entry about this topic a couple months ago but never finished it or got around to posting it. Today I will. I started off wanting advice. This is what I wrote: Gentle reader, I’d like your advice. Granted, I should say right from the start that I may not heed any of it. But I am interested in your opinions. Lord knows I get enough from dr’s and therapists. Might as well throw in anonymous internet blog readers, too. The more the merrier.

Here’s the situation and background info: Kaia’s developmental pediatrician suggested that she have a hearing evaluation last November to rule out any hearing loss. Hearing loss is not common with her syndrome, but apparently it is routine to evaluate with any speech delay and craniofacial abnormalities – even though we know that she will most likely have severely delayed speech (maximum of 50 words) to absent speech associated with her syndrome. So we scheduled a hearing test.

The day before the evaluation Kaia came down with a cold. Silly me, I didn’t think anything of it. I thought, a little cold shouldn’t affect hearing. Obviously I was wrong. Since it’s all connected, nasal/sinus congestion can cause fluid in the ears, which in turn can affect hearing. They did a tympanogram which indicated fluid in the ears and then they performed the most unscientific, most subjective hearing eval I’ve ever had the opportunity to witness. Kaia sat on my lap in the soundproof booth. Paul sat in front of her to one side. We were in charge of directing her to look to the front of the booth at a lighted duck when it flashed. There was a speaker on either side of her just behind her. The technician would send souds through a speaker and a little toy would light up in it. The technician started by utilizing the speaker to our left. Kaia quickly learned to turn her head, even before the sound, to the left to see the toy light up. I can’t even tell you how bogus the whole exam seemed. Anyway, the very unscientific result showed that Kaia had a mild hearing loss of about 20 decibels.

The dr advised us to wait a month after her cold and reschedule her for another exam. If the fluid persisted us, he warned us that he would be advising surgery to place evt’s. Wait a second, did he just say surgery? On her ears? When there have been no problems, no ear infections, and we know that she can hear us just fine? Yep, surgery. His rationale was that we wouldn’t want to burden our already challenged daughter with the added challenge of a hearing loss equivalent to plugging both of your ears b/c of the persistent fluid.

At Kaia’s 18 month checkup we asked for her regular pediatrician’s take. Now this is a guy whose judgment I trust. This is the same guy who made the immediate call over the phone that Kaia most absolutely did not need a feeding tube following a failed swallow study. So he’s got my respect. He didn’t think she needed surgery He argued that since no one could guarantee advanced speech develpment with this surgery that it was an unnecessary medical procedure. You go to a surgeon, they want to perform surgery. It’s what they do, he said. What’s the benefit to risk ratio? Here, can the surgeon guarantee improved speech? We know with her syndrome speech delay is not due to hearing deficit but rather brain protein structures. Why subject Kaia to a general anesthesia and surgery when the reward isn’t worth the risks (in his opinion)?

We went back after a month for another test. The result? Flat typanograms, indicating fluid again or still the same fluid from before. The good news: Kaia’s only had one ear infection ever. And that one cleared on its own, no antibiotics. Apparently up to 60% of ear infections are viral and do clear on their own. Kaia’s ped said that they give atb’s out like candy because most parents want them and kids need them to get back into daycares. But I digress. Back to the evt’s: the ENT doc still insisted that evt’s were the way to go for Kaia in spite of her healthy ears because of the now “persistent” ear fluid and her “craniofacial abnormality” (boy was I getting sick of hearing that term).

We decided to wait. Fast forward to present day. I found out we could schedule a hearing eval (sort of a second opinion with no insurance copays) through first steps and we finally got in last week. Results: flat tympanograms again. Still fluid. But still no ear infections. I asked the audiologist to perform the hearing eval anyway. Same exact subjective test, same results, but even more inconclusive. She suggested an ABR hearing test under sedation for objective, accurate results. But, here’s the catch: we couldn’t get the ABR until the fluid cleared (now looking more and more unlikely to happen on its own) or until we chose to do evt’s (they would do both the evts and the ABR at the same time).

Everyone I talk to about this - other moms, the audiologist, everyone - advises that we do the evt’s. For some reason, I’m still not convinced. I think it’s because I’m so hesitant about any medical interventions. I don’t trust that doctors are really putting my daughter’s interests first. I think they are fascinated by her case, follow the current popular trends in medicine like sheep – with no regard for patient individuality, and let’s face it, want to make money and prove their necessity in society.

I’ve since heard of one other alternative to evt’s: some sort of chiropractic massage to relieve the fluid. I haven’t looked into this at all. I was really just hoping the fluid would drain on its own and the issue would resolve.

Today made the decision super easy for me. If Kaia had to be sedated for the renal CT anyway, why not do all of it at once? Get it over this week before I change my mind. You’d think the hospital and doctors would jump at the chance to get this done, right? Incredibly naive thinking on my part. We spent literally the whole day at the hospital today trying to get all the departments involved to coordinate to get this together. I was given the run around, treated downright rude - like a pain in the ass interfering mother who had no right questioning or getting involved in the scheduling process. They could not have cared less that by not putting the effort to coordinate these procedures they would be putting Kaia through the risks associated with anesthesia twice. They did not care a whit. Really makes me feel even more confident in these people that they truly have my daughter’s best interests at heart. I don’t have the time or energy to recount all the ridiculous things I was told and contradictions.

The current status: We’ll either do the CT by itself later this week and may or may not do the evts and abr together at a later date, or the hospital will get their shit together, do the right thing by my daughter, and coordinate so that she can do them all together on Thursday. I’ll keep you posted. Forgive the profanities: I’m just a little pissed right now. It’s been a long day.

Ding dong, The taxes are done!

2009-04-14T06:05:00.000-07:00

I wish I had something more interesting to report but I’ve spent the last weekend holed up in our office doing the taxes. Yes, I procrastinated a bit this year. I actually used to sort of enjoy doing the taxes. We have some complicating factors which I found great satisfaction in figuring out all the little ins and outs and crazy little irs rules. Now, it’s just time spent away from my little girl and husband.

Kaia’s Grandma and Grandpa came to town for the weekend to help Paul out while I was holed up in said office and it’s always so great to have them around. The best part is how much Grandma absolutely adores Kaia and all the nitty gritty details of taking care of her – changing her diapers and even the messy, frustrating business of feeding her.

Bonus of having Grandma and Grandpa here: Paul and I got to go on a couple dates. I surprised him Friday night with a couples massage. He had never had a professional massage. It had been years since I had. We were both all giggly and excited to do something so different. I felt a little extravagant about spending so much money on a hour’s worth of luxury. I felt much better about it after finishing the taxes and discovering that uncle sam decided to reward us this year with a nice little refund.

Let’s see, what else? Kaia had her augmentative communication evaluation Monday. She didn’t want to “perform” but the therapist still recommended, based on the reports of myself and her speech therapist who also attended the evaluation, a low-tech device like the go talk 4+, the cheap talk 4 or 8, the 7 level communication builder, or even the super talker. We now have access to the lending library where she’ll get to borrow any of those devices and test drive them for a month at a time.

We’re also going to be bumping speech therapy up to twice weekly so she’ll have an extra hour of therapy each week (up to 7 therapy sessions a week now). I, of course, have mixed feelings about this. I want her to have the most opportunities for success and yet still give us time to have a life outside therapy. I just can’t rightly keep that hour of therapy from her. Not when we only have just over a year in early intervention left.

Free nursing cover (only pay $7.95 shipping)

2009-04-09T11:32:00.000-07:00

My bargain hunting friend forwarded me this deal borrowed from Babycheapskate:

http://www.uddercovers.com/shop1.php

Use code onefree to snag a free pink or blue nursing cover from UdderCovers. Originally $32. Great shower gift! Grab one before they're gone.

I ordered the blue one because I'm still nursing Kaia and I've been wanting to try a cover with the built-in rigid neckline. I just got it in the mail the other day and while it was worth the cost of shipping, I wouldn't have paid much more than that for it. I still think it's a great deal worth passing on, though. There are only pink and blue ones remaining, and the blue ones are on backorder and won't be shipped until after May 1st. Get yours while you can!

Got support?

2009-04-06T21:47:00.000-07:00

Okay, I have to admit I stole that tagline. It was on the t-shirts sold last summer at the conference for Kaia’s syndrome, It’s emblazoned across the chest and is a little embarrassing to wear in public but I love it nonetheless.

I was talking with an old college friend today that just had her first baby a month ago. It made me realize how much support and connections I’ve encountered as a new mom. Paul and I have lived in Indianapolis for 7, almost 8 years now. I’ve made more friends in the past two years, since Kaia was born, that I did in the 7 years living here prior to that. I’ve sought out and accepted recommendations from others to social groups. Some have been more helpful than others.

My favorites are my CP Moms Group, a group started as a support group for moms with kids with CP but which also graciously extends their support to other moms with kids with special needs. Since so many kids with Kaia’s syndrome are misdiagnosed as having CP (or autism) I’ve found I have a lot in common with these ladies.

When I met them I really didn’t know any other moms with kids with special needs. In fact, the only other mom I knew that had a baby with special needs suffered the loss of her little girl, who passed away last August. That baby’s death was unexpectedly difficult for me. There were several emotions intertwined: the loss of the one person I knew locally who could relate to what I was experiencing (she moved to another state following the death), guilt (albeit irrational) over my child doing well, thriving and surviving, and empathy for her loss.

Shortly thereafter, a friend forwarded me info on the CP Moms Group and I attended the first group meeting in October, not sure what to expect. I found an incredibly supportive, well-educated, resource-seeking and sharing group of women. Our kids are different ages, with different abilities, but we share the experience of parenting a child with special needs. It truly is nice to know you’re not alone. We meet at least once a month sans kids and talk about our and our children’s challenges and triumphs. Sometimes we get together with kids for playtimes too.

Tonight I attended a writing project group for moms of kids with special needs. It isn’t restricted to certain diagnoses. I vacillated about going – would it be worth the effort (it’s a long drive, 40 minutes each way)? I decided since I didn’t have class this week that I would try it.

Again I discovered a group of women anyone would admire – women operating under a set of circumstances I could never admit to wanting (one has 3 children with an autism diagnosis) - yet they are committed to finding the joy (our topic for the night, although I’m told they delve into the darker side/emotions of having a child with special needs as well), sharing the most helpful resources, and who are just generally articulate, enjoyable people with whom to pass an evening.

The group intends to meet (and usually does) at a church that allows free use of meeting space, but tonight there was an issue with a locked door so we went to a local Mexican restaurant. Some of us had margaritas, there was no writing done, but there was much bonding and sharing. I think it was worth the effort. I also discovered a potential resource for the future for Kaia that could save us thousands of dollars. More about that later.

What are your sources of support?

How much sleep is enough?

2009-04-05T20:42:00.000-07:00

Have you seen the latest sleep research by Ferber? In the most recent issue of Babytalk, he explains that babies need less sleep than we’ve thought. “We’ve found that infants don’t need nearly as much sleep as we once thought. The idea that 4-month olds can sleep 15 or 16 hours a day is wishful thinking…”

I gotta say, this is the news I’ve been waiting to hear. For months, since Kaia was born, really, she’s needed less than the recommended number of hours of sleep. For a mom desperately trying to provide her child with the optimal environment, it has been a lesson in acceptance to realize that she just doesn’t need that much sleep. Most days she gets a total of about slightly less than 12 hours total sleep; nighttime and day sleep included. She does about 10 hours at night on average and a good one to two hour (on the good days) nap.

Turns out that’s right on target. According to Ferber, an 18 month old needs a total of 11 5/8 hours of sleep per day, 9 5/8 hours of that occurring during the night and a 2 hour nap during the day. He says that a 1 week old baby is the only age that needs 16 hours total sleep per day, then it goes down to 14 hours at 1 month, 13 hours at 3 months, 12 ½ hours at 6 months, and down to 11 5/8 hours by 18 months.

Maybe there are some extraordinary toddlers that will sleep 12 hours at night and take a two to three hour nap during the day. But not my Kaia. I wish it were so. Aah, I wish it were so. You can lead a baby to the crib, but alas, you just can’t make her sleep.

Aloha!

2009-03-29T11:42:00.000-07:00

I haven't been blogging much lately because we've been busy packing for a trip to the Big Island of Hawaii. We're finally here after a long day(s) of travel. We tried to get out of Indy on Thursday evening but the non-rev travel just wasn't happening (our fault for knowingly trying to travel over spring break) so we went home and tried again on Friday morning and squeaked by. As anyone who's traveled to Hawaii can tell you, it was a couple long flights, but Kaia did great. I had to hold her as a lap child on the first flight but a person was kind enough to let Paul switch seats to sit by me. As I may have mentioned before, it's pretty much impossible to nurse her on the plane unless Paul is next to us or there is an empty seat next to us. Her legs hang over on to his lap or the empty seat! She fell asleep nursing on takeoff and I held off as long as I could but finally had to get up to use the restroom. She woke up when I had to move and of course wouldn't go back to sleep. The next flight we had an open seat next to us and we got to bring her car seat onboard which was really nice b/c after she fell asleep nursing I put her in the car seat and she took a nice nap. We could move around and she remained asleep. This is the first trip we've taken her big girl convertible car seat and she seems to really like facing forward in the back middle seat of the SUV with a great view. (We've kept her rear facing in the convertible seat at home).

The first night was rough for Kaia (huge time zone difference and new environment), but she is sleeping in late this morning so I wanted to post some photos of our first day at the beach. She loved to stand at the edge of the water and squealed gleefully as the waves approached and got her legs wet. She'd laugh as they'd recede and then squeal all over again as they returned.

Eating is proving to be a challenge so far on thie trip - so many distractions - but she is drinking from her straw cup and nursing great. Yesterday we broke down and added carnation breakfast to her drink since she wasn't eating food great and then she really didn't want to eat. I swear that stuff is baby crack. It makes the milk taste like vanilla soft serve ice cream (which she loves). She fills up on it and doesn't want to eat food. I think we'll have to try feeding her or offerring the food before she sees the cup. If she sees it she just points to it and vocalizes until she can have it. She is also getting super independent and wants to feed herself so badly and not have us help her scoop or bring the spoon to her mouth, but most of the time she twists the spoon and the food falls off or she flings it just to watch it go flying. Aah, the joys of feeding a toddler.

We've also seen lots of wildlife so far. From our deck at the resort looking on to the golf course: wild turkeys, herds of wild goats, and a very friendly black cat. At the beack: sea turtles, kentucky cardinals, and lots of fish.

Well, I've tried several times to upload pictures but the internet connection here sucks so I'll have to do that once we're home. For now, Aloha!

Ride on, my girl

2009-03-20T12:10:00.000-07:00

Last week Kaia’s PT suggested we look into getting Kaia a ride on toy. Kaia had one that her grandparents had purchased brand new for her last year that converted from a sit down ride on car to a push toy. She loved the push toy aspect of it but she’s so tall that it was just too low for her to use as a ride on toy.

It’s still too early for garage sales so I checked out craigslist. It’s a little pricier than garage sales in general but sometimes you can find exactly what you’re looking for without driving to a bunch of sales.

I picked up this toy on Sunday afternoon. It was in great shape, had never been used outside, and cost only 10 bucks. We put batteries in it and Kaia loved pushing all the keys and buttons. She’s really isolating her pointer finger to push now. I tried to show her how to use her legs to push but she just didn’t quite get it.

On Wednesday her PT made her weekly visit and worked with Kaia for about a half hour on the ride on toy. She helped Kaia put her legs back up on her toes and assisted her to push the toy backwards with her feet. By the end, Kaia was then pushing the toy forward if you prompted her with the backward assist. She still wouldn’t keep going though. I continued to work with her after the PT left until her nap. Right after lunch she pointed and vocalized to her toy so I assisted her on to it by helping her shift her weight to one leg and again prompted her by giving her the backwards assist. Kaia pushed forward and then kept going! It’s so cool to see her getting it, to see that connection form in her brain, to see her learn and progress. She loves this toy, and hubby had to admit it was a good buy!

Weekly roundup

2009-03-15T20:17:00.000-07:00

Kaia’s Aunty Karen recently bought Kaia this book. Kaia, in the last couple weeks, started pushing the buttons which motivated me to start looking into augmentative communication. We know that kids with her syndrome, in spite of having a limited vocal vocabulary, are often very successful at using complex augmentative communication systems. So, I spent the lion’s share of last Sunday and Monday trying to figure out if our early intervention program would cover augmentative communication devices. I finally discovered after much pestering of Kaia’s service coordinator that we could get her an augmentative communication evaluation. I’ve heard that if she does well and they think she may have the ability to be successful with a device, we may be able to borrow or rent different ones. Getting this evaluation, along with several experiences with our early intervention program over the past few months, cemented what I’ve been learning, which is this: no one will necessarily look out for your child or offer what may be incredibly helpful services for your child. You have to do your own research and advocate for what is best for your child.

Vital Stats – On Thursday, Kaia’s nutritionist/dietician made a visit and weighed and measured her. Kaia weighed in at 24 lbs 13 oz bare naked, and is 34 and ¾ inches tall. That’s an increase of 1 lb and 11 oz and 1 full inch since the dietician’s last visit Jan 16th! Kaia really is a tall, thin drink of water. But something is working! She’s gaining weight and height. We’ve recently discovered that Kaia loves Haagen Daaz ice cream (260 calories in one little serving container. She never eats the whole serving in one shot; it usually lasts a couple days).

We absolutely love Kaia’s speech therapist. In addition to all the speech and language play she does with Kaia. she also started a feeding therapy with her that is deceptively simple. She takes the pressure completely off of eating and does it outside of the highchair, using foods that I want Kaia to eat: crunchy/chewy snack stuff that she has to chew. It is a very positive experience for Kaia; any attempt made by her to mouth, lick and/or bite down merits lots of praise and clapping. We all participate and at the first sign of distress Kaia can put the offending food in an all-done container. It wastes a lot of food but it definitely is worth it. Kaia frequently prefers to try to feed us, but she will and loves to have me “kiss” her with the cracker/whatever in my mouth. This is actually how she initially started allowing these foods to come close to her mouth. She is now at a point where she even retracts her tongue and attempts to bite down on the food when I “kiss” her with it. It’s all very fun, there’s lot of smiling, giggling and chortling going on. Kaia was starting to chew this weekend while eating and I know that it is because of this type of activity.

On the respite front, we finally! selected a provider. We learned that the annual budget operates on a fiscal calendar from July 1st to Jun 30th which means that we have just over 3 months to use up our annual allotment of respite hours or lose them. I found a trusted old coworker who is willing to do all of the hours we have available. So, if we want, we can have two 4-hour evenings of respite each week until Jun 30th. While this is tremendously exciting, I’m a little nervous to be away from Kaia so much. However, I completely trust this person and that brings such peace of mind.

Speaking of respite, this past weekend we took Kaia to two Parent’s Nights Out programs in a row. The PNO we’ve been using through Easter Seals Crossroads expanded their program and parents can now bring their child two times a month. We also found a church that offers a quarterly PNO so we had Kaia attend that for the first time on Saturday. Both programs were great and seemed extremely well organized. I can not even say how great it was to be able to go out to eat and just talk. We rarely have time to do that – to just focus on each other. We really tried to follow some wonderful relationship advice and not discuss the child(ren), jobs, or money. Instead, we just focused on each other. It was so refreshing.

In other Kaia news: Kaia loves, loves, loves clapping and will now bring both pointer fingers to her face dimples area to initiate or imitate “when you’re happy and you know it” song. If we don’t clap for her when she is expecting it she will take both of our hands and bring them together to have us clap for her. I think this is also a revival of the game “close together, far apart” that we’d play with her while she was practicing balancing standing to get her to be able to move her arms to different positions and still keep her balance. She’s also kissing like crazy but does these open-mouth, drooling French kisses that we absolutely adore.

And, finally, probably the best part of the weekend for me: We Went Running! In my former life before Kaia, I ran. Hubby and I ran in half marathons and enjoyed the bonding and health benefits. After Kaia, I was determined to get back into running, and I fought valiantly for several months. I registered for the mini marathon in Indianapolis and tried and tried to train. At best, it was incredibly difficult to even complete a training run on the treadmill while Kaia was napping. One day it took 3 of her naps for me to complete my run. As Kaia got older, I didn’t want to strap her into a stroller, immobile, during the precious little time that she could be learning by moving her own body. I was expecting way too much from myself and it was stressing me out no end. Most days I was lucky to get a shower. I finally decided to accept that for the time being, running just wasn’t going to be a part of my life.

And now, a new chapter is beginning. For the past few weeks with the spurts of warmer weather, Paul and I have been saying that we should attempt a run and see how Kaia handled it. We went tonight and Kaia loved it! She pointed out and squealed at the deer in the park, laughed when I ran past the stroller, and enjoyed the music we listened to from the speaker on my cell phone. It was so great! My knees are a little stiff but I am finally starting to reconcile her need for movement with my own. I think a couple necessary things are happening: she’s started walking and I’m seeing the amazing progress she’s making with her gross motor skills. I know that having her in the stroller a few times a week while we run isn’t going to be the end of her progress. We still are very conscious of her need to move and made sure that when we finished our run, while we were stretching, she got out of the stroller and had the opportunity to walk around on the grass. She enjoyed all the antics of our stretching positions. Then, when we got home, we gave her more opportunities to push her toys and walk outside again. The other necessary thing, aided by the positive experience of our parent’s night out, is that I’m realizing we really do need to do things for us - that not everything can be about and be defined by what is best for Kaia. We are a family and our needs matter too. Part of me can’t even believe I’m saying that but I know that I need to take care of me too. My whole world is taking care of Kaia. Next comes my husband and his wants and needs, and last is me. It’s been too long. So, while I’m not signing up for the next half marathon yet, I am going to try to run a few times a week. Just for me.

On the go, go, go

2009-03-09T21:32:00.000-07:00

This past weekend was go, go, go. Saturday was a balmy 70 degree day here in Indy. We decided to head to the zoo. We purchased an annual zoo membership in December after being entranced by the Christmas light displays and zoo hours open until 8pm. Then January and February set in. Frigid, raw cold. No zoo for us.

I think every family with small children all had the same idea Saturday. It was stroller central. It’s funny. I’ve noticed our stroller usage is different than how other parents utilize a stroller. While other parents will use the stroller as transportation for the child, we use it to haul our huge diaper bag, my purse, etc, and have Kaia push the stroller. Unless, like on Saturday, we have Kaia nap in it – which normally I never, ever do because I am a total nap slave. She needs to sleep in her crib. I revise that – I need her to sleep in her crib. I need that break each day. It’s just funny to see all these other kiddos hanging out, chillin’ in their ride, while Kaia, with proud intent, determinedly pushes her stroller along. I want her to have every opportunity to move her body, to know how to use her body for her own transportation.

I had to nurse Kaia a couple times at the zoo and it was pretty inconvenient. There’s no real great place at the zoo to nurse a toddler. We found an empty amphitheatre but later another Spanish-speaking family and children were hanging there too. There was no other place to go so I nursed her there while all the kids played around us. I wondered for the first time if other people think Kaia might be getting a little old to be breastfeeding. I sat her up to pat her back and burp her and stood her up and realized how big she was getting. It was in stark contrast to a woman I had just witnessed in the women’s restroom nursing (or attempting to) an 11 day old baby. The baby looked like a little bird to me. She had to literally show the baby the nipple and after several attempts finally got the baby to latch on. Kaia was like that before too but now is like a little barracuda. She now lifts up my shirt if I make the milk sign to her. There was no way I could’ve nursed Kaia in that restroom. Every flush of the toilets and rocket launch noise of the hand dryers running intermittently would’ve prevented her from nursing.

Instead, I peacefully nursed Kaia in the amphitheatre, while I watched the large-by-North-American-standards Hispanic family kids play contentedly around us. My husband snoozed on a bench nearby. I felt the wind blowing gently through my hair and the sun shining on my face. My little girl suckled at my breast, and I sensed how truly good life was in that moment.

Kaia also continued hippotherapy last week. She was standing! while riding on the horse this week. She’s been riding a different horse than Molly (the white show pony on the first day). Her newest steed is a brown horse with white markings on the face. He has a thinner back. And, get this, his name is Fairy Tale. Can you believe that? Fairy Tale. How cute is that? After hipportherapy we went up to a friend’s house for a playdate. Kaia will be starting a new OT at the end of April and the only time she has to fit Kaia in is immediately following hippotherapy so we'll have to race back home to see her. Until then we're going to enjoy being out and about early in the day on those days. But the good thing is then we'll have Fridays completely therapy-free. I'm looking into another storytime we could go to on those open days or maybe we'll just do other fun stuff. It's so hard to get out with all her therapies. I'm also looking into starting her in a kindermusik class. The girl isn’t a bit overscheduled, is she?

Sunday we went to the circus in the late morning. I was so excited to go to the circus. We were all a bit disappointed, though. I remembered the childhood magic of the circus, but the reality of the thinly veiled animal mistreatment, borderline talent, annoyingly overamplified sounds, and the mixture of the smell of cotton candy and animal dung just wasn’t as magical as I’d remembered. $18 a seat wasn’t too magical either. We managed to stay for almost the entire show then Kaia had had it and got pretty cranky.

We also spent some quality time out in our front yard/driveway this weekend so that Kaia could practice walking/pushing her various toys. Our whole neighborhood comes alive in the spring. We don’t have a playground in our neighborhood so the kids really just play in the street. It sounds like the projects. It isn’t, but I do think these kids could use a decent place to play. All the kids come running when Paul is out with Kaia. He’s like the pied piper. He’s always been like that, even before we had Kaia. Back then it was all the neighborhood preteen boys (who are now, I can’t believe it, in college). Paul is the cool old guy. The guy that knows how to do all the skateboard tricks that their Dads can’t do. Paul had a half-pipe in his backyard growing up so he is more than a decent skateboarder. But all the kids are in awe of someone who is their Dad’s age throwing those kids of tricks, and ask “Are you sponsored?” I know he loves it.

One very cute little neighbor girl always come to see Kaia when we are out. She is such a sweet girl. She is 5 and will be starting kindergarten next fall. She just loves to come see Kaia. On Saturday we had Kaia’s wagon out, her fancy radio flyer wagon. She alternately likes to push and ride in it. The neighbor girl joyously insisted on pulling Kaia around in the wagon.

I had this image watching them as she pulled Kaia in the wagon down the sidewalk. I imagined them older, in high school. The girl is just over 3 years older than Kaia. I thought - maybe when they are older, in school - she will look out for Kaia. Maybe if she sees her in the hall or at lunch she will say hi to Kaia. Maybe she will set an example for how the other kids should treat people that are different. Maybe she will be a guardian angel of sorts for Kaia. I know that’s a lot to put on a 5 year old girl. But I’ve got my dreams.

What I love about this girl is that she never once has asked what happened to Kaia’s lip/nose. She has a bit of a speech issue – she stutters – so maybe she understands what it’s like to be different and sees past that. Or maybe her parents already have had the talk with her and explained things and told her not to ask. I don’t care. I just love it that she loves my girl.

It was so cute how she would copy how I interacted with Kaia. We’ve been teaching Kaia how to climb into her wagon herself (it’s pretty difficult b/c it has the high wooden sides attached to the metal wagon base) and the other girl took it upon herself to teach Kaia as well. She would repeat almost verbatim the things I and Paul said to Kaia. What power we adults have, for better or worse, on children. I forget that sometimes. It surprised me to see that we have that over other children, not just our own.

All in all, it was a pretty good weekend.

Alternative therapy

2009-03-04T20:57:00.000-08:00

Last Friday I took Kaia to an alternative type of therapy. Another mom I know that has a kid with cerebral palsy was frustrated with the progress her son was making in traditional therapy and with the lack of creativity of the therapists. She researched other types of therapies and found one called the Anat Baniel Method, based on the work of Feldenkrais. More info at: http://www.anatbanielmethod.com/help-children-overview.htm There were no practitioners of this particular type of therapy in our city. The closest was in Chicago, a three hour drive away. So, desperate to try anything that might help her son, she drove him up to Chicago to do this alternative therapy. Thankfully her insurance is covering the cost (or at least part of it) of the therapy.

Being part of a group of moms with kids with movement issues, she and the practitioner decided to gauge interest by having the practitioner come to Indianapolis for a weekend and offer a free trial session to kids here. I jumped at the chance to give Kaia the opportunity to experience this alternative therapy free here in town.

I have to admit I was skeptical. Some of the tenets of the therapy I agree with partly, in principle. For instance, they advise no orthotics. We actually waited quite a while before finally getting orthotics for Kaia. My concern was that she would never strengthen her ankles, which pronate, if they were fixed in orthotics. I finally relented to the idea that if we give her that support, she would have an opportunity to strengthen the other muscles needed for walking by being able to have the stability to try it. The Anat Baniel practitioner (she’s not a licensed OT or PT) also advised us not to assist Kaia walking by holding one of her hands. The idea as I understand it (which may be completely wrong) is not to force a child to be more upright than they are ready to be. The woman, after having me remove Kaia’s shoes and orthotics, spent most of the time touching/stimulating Kaia’s feet in a sitting position. She also touched her back. She didn’t mind Kaia being in, and didn’t force her out of, a w-sit position.

I still don’t really completely understand the theory behind it. Perhaps she didn’t do a very good job explaining it or maybe I just didn’t listen well. The other mom’s kid and Kaia have the same physical therapist. This PT was there observing for the session (The other mom had scheduled the PT to be there to watch her son’s session and the PT stayed for Kaia’s upon my request). I could tell she was trying very hard to be respectful by asking questions regarding the how/why of what the woman was doing. I didn’t think the practitioner provided an adequate explanation to her either. There definitely was some tension in the air. It pretty much is the complete opposite of everything that we’ve been told by traditional therapy to do with Kaia.

Kaia is tactilely defensive and did an admirable job putting up with all the touching. But fairly quickly she started to push the woman away and started signing “all done” and “bye bye” to her. I felt a little guilty forcing Kaia to submit to this therapy and yet I force her to do things that she doesn’t necessarily want to do all the time because it’s good for her – changing her diaper, brushing her teeth, etc. Inwardly, I was elated to see Kaia communicating her desires, even if I couldn’t fulfill her request. Thankfully the woman discovered some quirky things Kaia likes. Kaia warmed up to her so much that by the end she was trying to kiss the practitioner.

Anyway, the upshot is that if the practitioner generates enough interest, we could bring Kaia for sessions with her when she comes to town for a cost of $95 per hour. It’s actually unusual for insurance to cover it. I told her I’d check with our insurance to see if they would cover it because otherwise we really couldn’t afford it.

That same evening we brought Kaia to the monthly parents night out program. When we picked her up, Paul took her by the hand to assist her to walk down the hall. Wouldn’t you know it, she pulled her hand away and walked - on her own - the entire length of the hallway. It was at least 25 feet. The only reason she stopped was because the hall ended. We’ve had these breakthroughs before but she will usually revert to crawling almost immediately. So I didn’t hold my breath that it would remain consistent. She definitely has been on the cusp of walking for a couple months now, though.

Saturday we took her swimming in the morning and shopping in the evening. She was off and on with the walking. On Sunday, we put her therapy shorts on her. They’re called hip helpers, are bright red spandex, and she looks like a little super hero wearing them. She took off on Sunday! She walked at least 50 feet continuously and even made a 45 degree turn on her own in the middle of that stretch. She’s kept at it; alternating between doing really well or not being as motivated when she’s tired and/or hungry.

But she really can and is walking! She still falls a lot and walks with a wide base of support (the shorts do help with that), but she can do it! She can also climb up on to the couch by herself now! (That started late last week). Even after coming down with a cold Monday morning, which has thrown her balance off in the past (one of her therapists attributed that to increased fluid in the ear, which is the center of balance), she has continued to persevere in attempting to walk this week.

She also made the “help” sign to me, independently, without any prompting, today. Holy cow, was I surprised. Then she did it again a few more times. She also has said “bubbles” and “more” a couple times this week. She just loves those bubbles.

So what do you all think? Do you think she was just ready, no matter what? Do you think it was the one alternative therapy session? Do you think it was the hippotherapy (she’s gone 3 times now)? Maybe it’s the confluence of it all.

I wish I knew, but in the end I guess it doesn’t really matter. I accepted long ago that all we can do is maximize Kaia’s environment and provide opportunities for her to progress. She’s going to do it in her own time. I’m constantly amazed by her perseverance and her abilities in spite of the incredible challenges that she faces.

The diet I'd like to have

2009-03-02T12:21:00.000-08:00

I don’t know if every mom worries about how much their child eats but since the day Kaia was born I’ve been, I think you could accurately say, obsessed with how to maximize the calories that go in her body. Kids with her syndrome are usually described as “tall and thin”, but when we went to the biannual international conference for her syndrome last summer and saw some of the older kids, I wouldn’t hesitate to use the word emaciated to describe them. Feeding tubes, especially in infancy, are not uncommon. Throw in a diagnosis of dysphagia and cleft lip and palate, and it creates the perfect storm for a paranoid mother. While everyone – doctors, therapists, her nutritionist, and family members, recognizes that she is gaining weight and doing fine and concludes therefore that I’m worrying too much – I know otherwise. I know she is doing so well because of all the painstaking care I’ve gone to in making sure she gets the most bang for the buck calorie-wise. I’ve gone so far as letting breastmilk sit in the fridge for a day or two to allow the cream to rise, then skimmed the cream and added it to her other foods. I offer her at least 4 meals a day plus opportunities to nurse. If Kaia does end up needing more extreme nutritional intervention, it won’t be for a lack of my trying to avoid that. I know that a lot of you reading have kids who require tube feeds. I don’t doubt that you did everything you could to avoid that too. Sometimes no matter what you do a kid needs that extra help. I’d like to share a sampling of some of Kaia’s dietary staples, in hopes that another parent may find it helpful or even share some tips with me.

Kaia's ultra fattening (but healthy) mac-n-cheese

16 oz pasta (I use whole wheat Kroger brand salad rotini pasta)
1/2 c butter (the real stuff, unsalted)
1/3 c flour (I use whole wheat flour)
2 c whole milk
4 c shredded cheddar cheese (use the full-fat, no reduced fat here)
1 container 12 oz small curd cottage cheese 4% milkfat (the full fat stuff again)
2 lg eggs, beaten

Preheat oven to 350
Cook pasta, drain
Melt butter over low heat, whisk in flour for 1 min. Whisk in milk. Cook over med heat whisking constantly until misture is thickened and bubbly. Stir in cheese and remaining ingredients. Stir in pasta. Spoon mixture in large casserole baking dish. Bake at 350 for 30 minutes.

I double this recipe, then spoon into portions on wax paper and freeze it, then put in large gallon size ziplocs. I use two frozen chunks, mix in a vegetable like cooked chopped kale, microwave, and voila! instant lunch/dinner.

Other favorites:

Spaghetti - just whole wheat spagetti mixed with jarred spaghetti sauce and lots of whole milk ricotta cheese. She loves this stuff. It's high calorie and healthy.

I feed her half an egg yolk and about 1/8th an avocado every morning. I boil the eggs, let then cool in fridge, peel, cut in half, and freeze the egg yolks for Kaia. Paul & I eat the egg whites. Same principle for the avocado: I buy in bulk at Sam’s Club, and cut in 1/8ths when it's ripe and freeze the sections. That way it never turns brown.

Another great recipe but one that Kaia wasn’t too hot on so I’ve haven’t made it again: Cooked brown rice with coconut milk (I bought the coconut milk canned, the full fat version has 120 calories in 1/3 cup and 10 grams of fat!) and a little cinnamon and diced pineapples and oranges mixed in.

She also has liked the mini pancakes Kroger brand (they smell like chocolate chip cookies when heated) smeared with butter. I'm sure they're not ultra healthy but she has loved them in the past. Spreading almond butter on the pancakes is another great way to increase the protein and calories. I haven't introduced peanuts yet.

Grilled cheese sandwiches are super easy and relatively healthy if made with whole wheat bread. Just melt butter in pan, put in whole wheat bread slice topped with full-fat velveeta and again, instant meal! I tried regular cheese and she likes velveeta better.

Kaia does eat some of the foods we do – she’s had turkey and peas, sweet potatoes and meatballs, and fish from our dinners. I've given her other things that we eat too. I usually just try to add different types of cheeses or butter to increase the calories/fat content. Some of the morningstar farms frozen appetizers like portabello mushroom bites, or broccoli and cheddar bites are actually pretty high calorie too.

Oh, another one of her favorites in crab salad. You know, the fake crab meat stuff? I mix that with full fat cream cheese, real mayo, and real butter, and she loves it.

Kaia still has trouble with oral motor skills (chewing) so we fork mash just about everything. She can handle small pieces of banana or grilled cheese but she isn't really chewing yet - just mashing it around in her mouth. She recently started biting off crunchy bits of graham crackers so we’re hoping this means her oral motor skills are improving.

A disclaimer: we use whole wheat bread and grain products. I know some parents feed their kids a wheat-free, dairy-free diet (or gluten free, casein free, I’m not really sure what the difference is). Many of the kids with Kaia’s syndrome exhibit autistic-like traits and I know this is a popular intervention for autism. I looked into it but didn’t see any real hard data to support the drastic change that diet requires. If you know of anything different (valid scientific data supporting the diet), please let me know.

For those of you with kids who struggle to gain/maintain weight or have feeding issues, do you do anything else to encourage weight gain? Any favorite recipes or tips you’d like to share?

No comment

2009-02-27T05:08:00.000-08:00

I’ve just discovered that some people have been having trouble posting comments on this blog. I apologize and am trying to figure out why this is happening. I am very new to this whole blogging thing and really have no idea why this is happening. I rechecked the settings for the blog and it should be allowing all comments, even anonymous ones. I did a little more looking around and it sounds like this may have something to do with a problem blogger is having with word verification. Here’s what blogger said in their known issues help section:

“The word verification form is currently failing to load for some users. As a temporary workaround, you can disable word verification from the Settings Comments tab. We're working on a fix now, and apologize for the inconvenience. — latest update on Monday, February 23, 2009”

So temporarily I’ve disabled the word verification setting and hopefully this should resolve the issue. Please email me if you attempt to comment and the problem persists.

I want to thank one fellow blogger in particular for bringing this matter to my attention. Failing another way to reach me (I didn’t have my email on this blog at that time), she posted a notice to me on her blog http://signsoffaithbook.com/2009/02/23/dear-special-insights-aka-kaias-mom/ I’ve mentioned before how much I greatly enjoy and admire her writing. Seeing her mention my blog on her blog was kind of like getting a shout out during an actor’s acceptance speech at the Oscars.

I am really enjoying the online community I am finding of women bloggers. I'm loving reading all your blogs and getting feedback from you. I never imagined finding this kind of support through blogging. So, let the comments commence!

Required reading

2009-02-25T17:16:00.000-08:00

A close friend of my sister’s gave me this book (along with several other helpful books) when Kaia was just a newborn. I don’t think I’ve read a more honest account of the first year of new motherhood. I related to so much in this book. I think it should be required reading for any new mother. I absolutely love the complexity of the author – the juxtaposition of her love of Jesus with her adamant defense of a woman’s right to choose and her hatred of Bush. I love people, like her, that don’t buy into the world as a black and white place.

I had read so many pregnancy books while pregnant and so many “how to get your child to be the perfect sleeper” books after Kaia was born. None came close to the helpfulness of this book. The author is brutally honest about the downright torture of sleep deprivation accompanying new motherhood. No one else told things as straight up as she did. I remember people cooing at Kaia and telling me over and over again to cherish those times. I wanted to slap them because I was so exhausted. This book made me feel okay about that. I highly recommend everyone purchase this book and give it as a baby shower gift. Trust me, the baby will outgrow those cute outfits in a matter of months but this book will be a gift to the new mom in a lasting and meaningful way. The only thing better would be the gift that a gentleman from the author’s church gave to her: showing up at a new mom’s door and offering to clean her bathroom.

Preschool visit part II

2009-02-24T19:21:00.000-08:00

Yesterday we visited the church preschool. The beginning of the visit was uneventful. Kaia didn’t seem too impressed or interested in any of it; she just wanted me to carry her around. When I’d set her standing on the floor, she would cling to my legs. After a while, though, she decided she wanted to walk and did so quite well with one hand held. (I was very proud of her!) I'm hoping that by the time she will start preschool next fall she will be walking independently well. I know they would not have the patience or staffing to walk slowly with Kaia holding her hand. They'd throw her in the big six kid stroller and wheel her around everywhere. She'd never get the chance or motivation to walk anywhere. But, I digress. Back to the tour. The preschool director gave us the full tour and we saw a couple of the older classrooms using the big muscle rooms. Kaia was fascinated with watching the children race around and climb over all the equipment. She stood on her own and got very excited when one boy started bouncing a ball. She was smiling at him. I was happy to see her responding this way because it gave me hope that she may actually get something out of the experience of attending; even if it is just delighting in watching or interacting with a typical peer.

Two little girls came over. Their class had passed us in the hall on the way to the gym. They had said hello to Kaia while they passed her walking. I noticed that they, like all the kids who had really noticed Kaia, were staring at Kaia’s lip and nose. I prepared myself for the question. They finally asked, “What’s that?” pointing to Kaia’s incision from cleft surgery. I replied, “That’s her beauty line, her special beauty line.” They looked a little confused but accepted that answer. Then the girl asked, “Why isn’t she doing anything?” I thought, if they only knew just how much it was that she was doing, standing on her own (!), and taking it all in. I just replied that she was watching them all play.

The director said after they had moved on what a great way that was to explain her cleft. Paul and I had decided following her surgery to call it that. We got sick of saying “her incision”, or even worse, her “scar”. I hated that word. We decided to turn it into something positive. I know that other people may not consider it a beauty line. But we do. And I want her to grow up hearing from her parents how beautiful every single part of her is. We honestly don’t even see her beauty line as being different. We just see our little girl, our Kaia. Today was a reminder to me that the world doesn’t. Kids see what’s different, and they will ask. They will probably tease her as she gets older. It makes me very sad that our little girl will have to endure that. It doesn’t matter what I do to try to protect her from it, if I try to put her in a Christian preschool that I would hope would be more loving. People, kids especially, are going to focus on what makes her different. I’m sure many will be cruel. I wish I could make that all go away. I wish I could make the questions and comments stop. But I can’t. I feel bad that I can’t protect Kaia from that.

Adults focus in a different way. They always couch their curiosity in a question. “When will she have her next surgery?” they ask. I’m not sure how to answer them. The truth is that we don’t know if she will have more surgery. But if I tell them that, they assume and ask if it’s a question of insurance, if because it’s all cosmetic from here on out, that the insurance won’t cover it. I’ve explained in several cases that no, that isn’t the issue. Insurance will cover everything. A look of confusion washes over their faces at that point. If it isn’t a question of money, why wouldn’t we have the surgery for her? The normal routine is to have the next surgery at around 4 years of age, before the child enters school. The purpose is to normalize the appearance in an attempt to prevent psychological impact. We just don’t know yet how much it will matter to Kaia that she looks different. We don’t know where she will be at cognitively. We figure, if she isn’t aware of the difference, then exactly for whom are we doing the surgery? Is it really for her or is it for everyone else? Is the sole purpose to make everyone else more comfortable with her appearance? If that’s the case, that’s a lot to put a little girl through for what I think is a ridiculous reason. People have tried to argue with us about this. Paul advised me to stop trying to explain. He said, “just tell them she’s scheduled to have the surgery when she’s 4 and leave it at that.”

Last week Kaia had a team meeting at the craniofacial center. We brought up our uncertainty about future surgeries when they started discussing the expected timeline for all the anticipated surgeries and orthodontia. Her plastic surgeon brought up a viewpoint at her team meeting that I hadn’t given a lot of consideration. It had crossed my mind, but not to the extent that he explained. He said that all the research shows that people will treat someone with a different appearance differently, so much so that their opportunities in life can be seriously diminished. This doesn’t surprise me. I actually did a research project in college that examined how obesity was correlated with job interview perception and subsequent job offers. The same principle applies to kids in the classroom. Apparently there are studies that show how much more attention teachers pay to kids with an attractive appearance. Again, this isn’t so surprising when you think about it. But does this really justify plastic surgery? People may feel differently because it’s surgery to “repair” a birth defect, as opposed to surgery to mold appearance to a societal ideal. But really it’s the same thing when it comes down to it. If her oral structures are functional and the only reason for surgery is cosmetic, it’s the same to me as a boob or a nose job.

Maybe I’m in denial or maybe we’ll feel differently over time. Her first surgery was horrible. For her and for us. The last thing I want to think about is how many more times we’ll all have to go through that again. What I know for sure is that we will consider everything for our daughter. We agonize over every treatment decision for her. We’re not going to take this lightly. We’ll consider all the benefits and risks. All the pain she’ll have to endure either way – physical and psychological. So, if you are a friend or family member, please stop asking about her future surgeries. I know that sometimes you are asking from a place of love and concern. But trust that we will make the right decision for our daughter. What we need most is your love and support. The rest of the world may focus on her cleft. We really hope you won't.

Preschool

2009-02-23T13:02:00.000-08:00

Kaia and I toured a preschool today. It went okay. I’m torn about this subject because I don’t know where she will be at developmentally in six months, or how I’ll feel about letting her go for two to four hours at a whack, but I figure it’s better to plan now and have the option open next fall than put it off. Otherwise, we may find ourselves in a situation where I’d like to have her in a preschool setting and not be able to find one that has an opening.

My main interest in sending Kaia to preschool is for her to have the opportunity to see typical peers playing and to interact with them, as well as to give me a break. I also think it’s a gift for the other kids to see and interact with Kaia. As I’ve mentioned in other posts, Kaia has never really been outside of our care for any length of time. Grandma and Grandpa (who visit from MN) watch her when they are in town to give us a chance to have date nights and we have utilized a parents night out program a few times for a couple hours at a time. That’s it. So I’m pretty nervous about sending her to a preschool but I also know that there are benefits for her and me. I can’t even imagine what four hours at a stretch to myself would be like anymore. I could study for class, go for a run (and even shower afterward), go shopping in peace and be able to put everything away once home - the possibilities honestly seem endless.

Originally I had been looking at co-op preschools. If you haven’t heard of these, they are preschools in which parents share a vested interest in teaching. Locally, there are two options for us. Both offer two hours, twice a week, 9am-ish to 11am-ish. Both require parental involvement two or four classes per month. That means ¼ to ½ of the time Kaia would be in preschool I would be there with her. They also require parental time commitment in the way of initial training and occasional cleaning. One of my biggest fears is that if I send Kaia to preschool she may be left sitting in a corner, in a w-sit, easily forgotten. Because of this, I figured co-op would be a great option since I’d actually be there to make sure that didn’t happen. However, it would also mean I wouldn’t get the break I’m really looking forward to with this whole preschool thing. For comparison purposes, co-op is also the same price as other options. One of Kaia’s therapists also pointed out that since sometimes I’d remain with Kaia at the co-op preschool and sometimes not, it may be more confusing and difficult for her when I don’t stay.

I also discovered a four hour, one day a week option through a local church. I am hesitant about Kaia’s ability (and mine) to tolerate being separated for a four hour stretch. They also feed the kids lunch there. I worry about her ability to eat in a highly distractible environment. They have the kids sit at a toddler table in little toddler chairs. Kaia’s never eaten outside of a highchair. But, it’s only one time a week. If she doesn’t eat well, I can feed her when we get home. It may even be good for her to observe typical peers eating. They have a 2 year old classroom which has a 10 to 2 ratio; but after speaking with the director and explaining my fears, she suggested we consider the option of putting Kaia in the 18 month classroom (their youngest classroom) which has an 8 to 2 ratio. The kids in that class wouldn’t be that much younger than Kaia - as little as 6 weeks younger since the cutoff for the two year old classroom is Aug 1st and Kaia turns two June 22nd. The director also said if we find that 4 hours is just too long at first, we could arrange to have me pick Kaia up early, after two or three hours.

Whatever option we choose will mean that at least one of Kaia’s therapists will have to see her while she is at preschool. I’m not too hot on this because it will mean we won’t get to observe the therapy session and have that first-hand knowledge of what to implement with Kaia, but it will also mean we won’t have to try to cram in that therapy session on another day. Since Kaia is now getting therapy 6(!) times a week, I don’t even know if that would be possible.

Do you send your child with special needs to a typical preschool or parents/mothers day out program? What has been your experience? If you had any of the same fears as me, how did you deal with them or how were they resolved? I have much more to write about our visit today but Kaia is waking from her nap so this must be continued later…

Flying solo

2009-02-16T21:04:00.000-08:00

I gotta say it - I’m proud of myself. The weekend before last I flew solo with Kaia from Indianapolis to Manchester, NH via La Guardia. Anyone who has ever traveled solo with a baby knows what a feat this is. Kaia and I expended this effort to attend my big sister’s birthday party. It’s a girl party to which men are not invited nor welcome so I didn’t have many options.

I do have to admit that by the end of it all I was exhausted. Really, really exhausted. I hadn’t been that tired since Kaia’s early months. I had to wake up at 3:45am on Friday in order to leave the house by 5:30am to arrive at the airport by 6am for a 7am departure. I didn’t get to bed until after midnight the night before. So already I was exhausted. Of course Kaia doesn’t sleep well the first couple days of vacation in a strange environment. Add to that we were staying in my sister’s unfinished basement (her house was packed to the gills with guests) which was a little (actually quite a bit) on the chilly side. I had Kaia wearing a long sleeve turtleneck shirt, pj pants, thick socks, a flannel footie sleeper, and her sleep sack, yet her little hands were still cold as icicles. I finally persuaded my sister to allow us to use a space heater.

Kaia nursed for 50 minutes on Friday night before finally dropping off at 10pm. Then she woke up when I laid her in the borrowed playpen and screamed until I returned after gulping a quick dinner (I was ravenous due to not having an opportunity to eat earlier) and finally fell back to sleep after continued nursing. So Friday night I got to sleep around 1am. Talk about a long day! Kaia then woke up at 4am, scared when she looked around in a strange place, so I got up to nurse her (something I normally wouldn’t do at home in the middle of the night). She fell back to sleep. I, unfortunately, had difficulty getting back to sleep, but finally did so around 6am, only to be woken up at 7:30am by Kaia ready to start the day. Ditto everything Saturday night, except Sunday morning it was up again at 4am in order to be the airport for a 7am departure. I even packed up all our gear and carried everything up the stairs and out to the car by myself on Sunday morning. Did I mention that I was proud of myself? The endurance required exceeded that needed for any training or road races that I've ever run. I still haven’t caught up on the sleep from the weekend.

The whole experience made me realize how lucky I am to be a part of a couple. I don’t know how single mothers do it. Hubby and I share so much of the load. Kaia is great on flights but just carrying all our stuff and her on and off the plane is difficult. I never turn down offers of help. If you ever see a woman traveling alone with children, please offer to help.

A highlight of the trip was Kaia’s experience with my sister’s dogs. My sister has two boston terriers. Kaia has never really been around dogs. Our neighbor has one, a very loud barking dalmation. Kaia cautiously checks him out by the fence while he frantically attempts to jump the fence separating our yards and barks frenetically in her face. She never cries, just trembles a little, stares very hard at him, and holds on to us for dear life. Upon entering my sister’s townhouse, the dogs came running up to Kaia and immediately started licking her hands. Being tactilely defensive, this is the most horrendous assault poor Kaia could endure. After a few seconds delay of shock, she started screaming. After that, the mere sight of the dogs caused her to quiver and scream with fear.

I knew (or rather, hoped) that Kaia just needed some time to warm up to the dogs. So, I held the dog at a distance to show her the dog was okay and harmless. Gradually over the course of a couple hours, I got in closer proximity to her while holding the dog. When I reached the point where I was very close, I had her pet the dog and showed her that I would kiss the doggy. Her whole disposition toward the doggys changed. They were now objects of fascination. She was obsessed with watching the doggys’ antics chewing and tossing a rope bone. She literally chased them around the circular layout of my sister’s place. Upon getting close, she would vocalize quite emphatically and point at the doggy. She was so excited. I took a couple short videos of her vocal exchange with the doggy.

I was quite concerned after this experience about how she would react to her (at the time) upcoming hippotherapy sessions. Thankfully the horse didn't try to lick her so she didn't respond with the same trepidation.

In addition to seeing my sister and celebrating with her, I also got to see my aunt and cousin, both of whom I rarely have the opportunity to see. Kaia and I did this same trip to my sister's last year in February but I think I was still used to the sleep deprivation then. I also flew solo with Kaia to and from ND in August. This February, the trip was worth the effort, but let me just state for the record that I absolutely, definitely, definitively, prefer not to fly solo.

Her little pony

2009-02-12T12:07:00.000-08:00

Growing up, I always wanted a pony. What little girl doesn’t? I don’t think I had an opportunity, though, to ride a horse until I was in my late teens. So it blows my mind that my little girl had her first pony ride today. And she will get to ride her pony, a little white retired show pony named Molly, every Thursday morning for the foreseeable future. These aren’t just any old pony rides, either. They are official hippotherapy sessions. A physical therapist guides Kaia on the horse around the large barn. Kaia rides facing forward and then facing backward. As kids progress, they even stand while riding on the horse. We saw a little 3 year old boy doing that during Kaia’s session today. Apparently he had started hippotherapy a year ago and couldn’t even bear weight on his legs. Within six months he was walking. There’s more info about hippotherapy in this article: http://www.nuvo.net/news/article/horses-heal The company featured in the article is the one where Kaia rides. The therapist named at the beginning is also Kaia’s therapist.

All of Kaia’s therapists have been telling us grand tales of how much progress Kaia will make when she starts hippotherapy. I don’t even care if that’s true. Don’t get me wrong, I want her to progress. I’m just excited that she is riding a horse! And I hold my expectations in check, especially after the professional who fitted her orthotics told us that kids were often walking within a couple weeks after getting them (orthotics). We just want this to be a pleasurable experience for her and I know that it is an amazing opportunity for her – in terms of sensory-input, another hour with a physical therapist, and just riding a horse, for goodness sakes!

Getting there has been a little complicated. Kaia’s been on the waiting list for occupational and physical hippotherapy since November. She was number 8 for OT and number 4 for PT. The hippotherapy stable called last week with openings for both OT and PT. We were in a bit of a dilemma over how to proceed with therapy because we were unsure how we wanted to pay for the sessions. The early intervention program through which Kaia currently receives occupational and physical therapy would cover hippotherapy by replacing either her OT or PT provider in the home. We’d also have to prove that these therapies were not working in the home. Right now she receives 2 hours of OT in the home and 1 hr of PT per week. Her OT works on feeding issues in addition to fine motor skills. The hippotherapy provider only had 1 hr of OT open and they cannot work on feeding at the barn. You’d think we could just keep 1 hour of OT in the home to work on feeding and have 1 hour at the stable for hippotherapy OT, right? Apparently that’s a big no-no. It seems it is impossible to have two providers on her plan for the same service (OT). (If you utilize early intervention in Indiana and have a different experience, please let me know.) We also really did not want to give up Kaia’s current PT in the home. In the end, we decided to do hippotherapy by paying for it with private insurance. This meant paying more out of pocket (a copay and coinsurance). That may not sound like much but over the course of a year it adds up. Our insurance is strange in that we have unlimited PT benefits – no annual limit on visits, no specific lifetime cap. However, OT benefits are unbelievably low. There is no annual limit on visits, but there is a lifetime cap of $1000. That covers maybe 10 visits. If you have a child with an ongoing need for OT, that is pitiful coverage. Kaia will receive, thankfully, services with the early intervention program until she’s 3. After that, it’s the school system, and from what I’ve been told, there really is no such thing as individual, 1 on 1 therapy there. That’s something we’ll just have to deal with in the future, though. Right now we decided to keep her two hours of OT in the home with early intervention, as well as her hour of PT, and utilize our private insurance to cover hippotherapy as PT. We’re still hoping that we may be able to appeal the ridiculous rule I mentioned regarding 2 providers with early intervention but I’m glad that we have such good PT coverage with our insurance and that she could get started right away. That’s the most important thing.

Here’s a couple shots of Kaia’s first pony ride. You can see that I was the sidewalker. Normally they don't allow parents to do that. Since it was Kaia's first time they made an exception.

Riding backwards:

Still smiling at the end!

She's on fire

2009-02-09T18:52:00.000-08:00

Kaia was on fire walking today. It's like she is turning a corner or a switch is happening in her brain that maybe walking can be as or more efficient that crawling. Several times today she would go from a supported standing position to another supported standing position via a few independent steps. I think she walked 5 feet in the living room that way. It was so cute, she did so with these short, staccato steps; almost a run. She has done this before but the quality of her movement and steps is getting so much better. I probably sound like a therapist when I say that but it's true. Lately I've been surprised by just how much she is choosing to stand without support as well, even when not enticed by a favorite toy. And over the weekend she was walking most excellently with one hand held. Most of the time she would hold on to just one of my fingers, as if she just needed the security that she was indeed being supported.

Then, tonight. It was a gorgeous day here. All of our recent snowfall has melted and it was almost 60 degrees today. So after dinner Paul took her outside to push her wagon. Even with all the above progress I still could not believe it when he said that she walked 27 consecutive steps! chasing the wagon just slightly out of reach ahead of her. That's a record. I wish he could've gotten video of it. I am feeling more and more optimistic that she is getting closer and closer to walking independently. She is such an amazing little girl.

Seashells on the seashore

2009-02-05T16:58:00.000-08:00

The weekend before last we went to Sebastian, Fl to visit my in-laws who were spending a week in the sunshine. The condo we stayed in included the use of a 15 foot motorboat so on Saturday we cruised out to a little island in the Indian River and did a little exploring. Upon landing, Kaia immediately started trying to jump out of my arms to get on the sand. We’ve always made it a point to put her in the sand on vacations for the sensory input. She never really seemed to care one way or the other about it but this time she really loved it. Here is a little photo-essay of our weekend.

I think Kaia could've played like this in the sand for hours...

Nope, do not adjust your screen, that is not Hank Williams Jr. That's my handsome husband sporting a beard and all I can say is, quite a hat.

This is my favorite. Yep, she's really squatting on her own. The beach was composed of literally whole shells that would just crush into sand beneath your feet. Kaia couldn't get enough of just scooping them up and letting them cascade through her fingers.

Proud Grandma Linda

Hangin' with Grandpa

Man, she loves the water

A girl's gotta have ice cream on vacation (Check out those oral motor skills!)

Ugh; returning to Indiana

The "I's" have it - Inspiration, Intimidation, and maybe even a little Insecurity

2009-02-04T22:25:00.000-08:00

Wow – in the short time since I’ve started this blog my readership has grown. I’ve invited a few people to read and posted the link on a social networking site. It’s amazing to me how many people will read this blog and email me to comment as opposed to commenting directly on the blog. Don’t get me wrong - I love the love in any form. I write this blog because I enjoy writing and there is so much about which I want to write. It’s an incredibly therapeutic process and a creative outlet. I don’t write for the comments, but rather for my original statement of purpose outlined in my first post.

However, knowing that you now have an audience can be a bit intimidating. I don’t want to edit what I write based on my audience. I wonder if that’s inevitable, though? Part of me wishes that I had remained completely anonymous. I could write whatever I wanted and not worry about whom I may offend or what someone may think. Yet somehow I crave the acknowledgement of an audience. Wow, saying (writing) that out loud surprises me. It’s a day of personal insight, I guess.

My foray into the blog world started with reading a few friends’ blogs. I think the first person I knew that had a blog was Mikal. His blog is http://www.belicove.com/. It is funny, thought-provoking, and at times controversial. Lately, he steadfastly posts Four for Friday questions, which are still funny, thought-provoking, and at times controversial, but his blog seems to have condensed to just that topic.

Then over the course of several years I met a couple other people that had blogs. I thought it was interesting, if a bit quirky and self-absorbed, to have a blog. Still, I was inspired. Putting it all out there like that just wasn’t me. I wished that it was, but it wasn’t. I didn’t feel like I had that much worth saying. Or, more correctly, worth reading.

My most recent blog inspiration came when I happened upon a blog after googling SMO’s. SMO’s are the type of orthotics that Kaia started wearing in October. A blog written by a mom of a child with special needs popped up. She had written an entry specifically about her son’s SMO’s. I was fascinated reading the post archives of her blog. She had faced so many challenges and experiences similar to ours. I was amazed by just how much I could’ve written of it. I was so inspired by her stories and by her candor that I finally had to make the leap and share our story. I only hope that I can give the sense of connection and inspiration to another reader that she gave me. Her blog is http://www.specialconsiderations.blogspot.com/. If you visit you’ll notice a striking similarity in how our blogs look. I’m afraid that’s my doing. Inadvertently I chose the same blogger template. I hope she’s not offended. They do say imitation is the sincerest form of flattery, right?

Then there are the blogs that intimidate me. I don’t mean that in a negative way. With the utmost reverence I read these blogs. Their authors can write. Holy cow, these people can write. They are funny, honest, fresh, and within a post can bring you to tears. There is a cadence, a natural rhythm to their writing that defies language. I aspire to write like that. A few of my blogs of intimidation include http://www.teahouseblossom.blogspot.com/, http://signsoffaithbook.com/, and http://www.stuffchristianslike.blogspot.com/. I don’t always agree with the authors on philosophical or religious views but I always appreciate reading their take on it. Reading their blogs sometimes makes me wonder if I have any business publishing my stories in cyberspace.

I guess I can’t promise to always be as entertaining or emotionally moving as the authors of my blogs of intimidation. But I do vow to remain true to my original purpose: “to document my daughter, Kaia’s amazing progress, to a few ends. One is selfish, to keep a journal of sorts of her early years; another is to communicate in an efficient manner all that is new in her world to those family and friends who are interested; and the last is to provide support and encouragement to, and to connect with, other families with kids with special needs.”

I invite all readers to comment. If you dare, comment publicly, using your real name, or even just your screen name. Honesty about who we are and accountability for our words is a powerful force. It’s one that I am embracing.

Signs of the time

2009-02-02T20:20:00.000-08:00

Kaia has officially added another sign to her repertoire. She really is making steady progress with communication. For the past week she’s been doing the “all done” sign, in addition to “more” and waving “bye bye”. The "all done" sign looks kind of like if you were brushing crumbs off your chest. The way Kaia does “all done” is kind of a both hands wave. She gets very excited when she sees us excited about her doing the sign. We start signing it back to her and her sign becomes even more animated.

Her receptive language ability is also growing more evident. Lately when we tell Kaia "it’s time to eat" and make the eat sign to her, or ask her “where do we eat?”, she vocalizes and points with an isolated pointer finger to her highchair. Then she crawls very excitedly to the highchair, pulls up to it, and looks at us like, OK, you said it’s time to eat, let’s eat.

She also loves her pecs schedule. Pecs is a picture exchange communication system. We started doing very primitive versions of pecs last summer with Kaia. Initially we offered choices with the pictures, and reinforced whichever picture she chose with that toy or activity. Then Kaia’s speech therapist taught us how to use a picture to teach her the concept of exchanging the picture for a desired outcome. For example, we used a picture of a green circle during a turn taking activity and Kaia would have to give us the green circle to have a turn with the toy. At first, when Kaia wasn’t yet releasing objects, we had to have two adults doing this activity with her. One adult would physically assist Kaia hand the picture to the other adult to get her turn. It’s much easier now that she is releasing objects because she is also giving us things.

Our newest foray with pecs is an activity schedule. I read about this at: http://www.brighthub.com/education/special/articles/2723.aspx. Although it really is intended to help kids with autism function more independently, I figured it would be an easier way for us to incorporate pecs into Kaia’s daily life now by giving her more opportunities to have exposure to the pictures and the concept that the pictures mean something. The other methods above I found I had to make a conscious effort to do once each day. It was another thing on the to do list each day and Kaia only had that one opportunity each day to learn that these pictures are useful for something. Kaia also thrives on routine so setting up a visual schedule seemed to make sense with her affinity for routine. It still is difficult to remember to return to the schedule so that she can remove the latest completed activity and put it in the all done envelope. Sometimes we get a few pictures behind but we just talk about them when we do catch up and she loves the chance to put more than one in the packet. It’s great because we make her stand to remove the picture, then squat to put it in the packet.

Last, but certainly not least, Kaia was also saying mama like crazy on Saturday. Music to my ears!

And the milk goes on...

2009-01-29T20:27:00.000-08:00

WARNING: What follows is, as my husband describes, a “graphic” description of Kaia’s and my breastfeeding journey. I did not shirk from including details that some may find very comprehensive and personal. I want other moms who are expecting special needs children to find an honest account of the challenges and joys of breastfeeding of a child with special needs. I searched for stories like this before Kaia was born and found few.

So, without further ado, our breastfeeding story:

I was never the girl who knew she wanted to have kids. I was never the woman who knew she wanted to be a stay at home mom. I actually, shamefully now, kind of looked down on women who did. But, there was one thing I always did know. I knew that if I ever did have kids that I would breastfeed. I had this image in my head of me nursing a baby in a rocking chair.

So, when we were told by the doctor that the ultrasound tech had detected that our unborn child had a cleft lip and palate, one of my first questions was, “will she be able to breastfeed?” The doctor said probably not. Then when we got the amniocentesis results back and found out that she had a rare chromosomal syndrome with a primary feature of low muscle tone, it seemed that there was no longer any question of her ability to breastfeed. For the doctors, anyway. Many of the kids with her syndrome needed feeding tubes, they told us. Kids that didn’t even have the complicating factor of a cleft lip and palate. They tried to see with ultrasound how far the cleft extended into her palate. We were told to expect a full cleft including the soft palate. One of the doctors had a child with a cleft and she took a special interest in our situation. She said our baby wouldn’t be able to breastfeed. So did the plastic surgeon. So did the geneticist and developmental pediatrician. I could pump breastmilk, they told me. But she won’t be able to breastfeed.

We made a decision to deliver at a facility that had a level 1 neonatal intensive care unit instead of the suburban hospital where our regular ob/gyn delivered babies, in case there were additional health problems we couldn’t foresee with ultrasound. The doctors at the high risk practice would continue our prenatal care and deliver our baby at the other facility.

Kaia was born via c-section one early Friday morning. The doctors, in the first of many predictions, had been wrong about how far her cleft extended. It barely extended into the hard palate, just affecting the alveolar ridge. Later that day Paul rolled me down the hall to the nicu for our first attempt at breastfeeding. Thankfully this facility with a level one nicu had lactation consultants on duty 7 days a week. Kristin was the first lactation consultant. She showed us how to tickle Kaia’s lips with the nipple to get her to open; how I could sit and hold her in a football hold – the most comfortable position after having a c-section. Because of Kaia’s cleft, she showed us how to use a nipple shield, which allowed Kaia to have the nipple extended further into her mouth. Kaia, the little trooper, latched on right away. She proved them all wrong. Those consultants were there with us for every feeding for several days. We had to prove to the doctors that she could get enough milk so before and after every feeding we weighed Kaia to see how much milk she drank. She had jaundice which made her very sleepy so we had to work very hard to keep her awake during feedings. We tickled her feet, combed her hair, anything to keep her awake. Because she was in the nicu, we used curtain screens around her little bassinet area in the nicu for privacy during feedings. There I was in a wheelchair, completely ensconced by supportive pillows, surrounded by Paul, the lactation consultant, and one or more RN’s. Often the doctors would peek his head over the screens to talk with us or the nurses. I didn’t care. My little girl was breastfeeding.

After a few days we introduced a haberman feeder; a special bottle designed for babies with clefts. Paul could feed her and the nurses could do night feedings in the nicu with it. Upon advice from the lactation consultants, I continued to pump following every feeding and every 2-3 hours when I was away from her. That advice was crucial to me developing an abundant milk supply. Kaia came home after a week in the nicu and I continued to pump after every feeding. Until she had the cleft lip surgery at 4 months of age, I continued to pump. After almost every feeding I would offer her the haberman bottle with expressed breastmilk to make sure she was getting enough milk. We could squeeze it to get her drinking again when she tired.

I liked the haberman at first. I wasn’t an experienced breastfeeder. That, combined with the use of the nipple shield and my abundant milk supply pretty much guaranteed that breastfeeding was a messy spectator sport. It just wasn’t something I was comfortable doing in public. So we used the haberman in public and Paul could help with feedings at night on the weekend and in the evenings.

I became an experienced pumper. That hospital pump was my constant companion. I pumped on airplanes, in airport gate areas, in bathrooms. But most of all, I just pumped. Often. I found a great product called a nursing cape. It was great for nursing and also for pumping. With it, I could pump in all the settings I mentioned and still retain my modesty.

I heard so many new moms complain about a low milk supply problem. I had the opposite situation: an overabundant milk supply. Now, if you have to have a milk supply problem, I was glad that mine was an overabundance. However, it was still complicating. I leaked. I leaked through countless nursing pads. I should’ve bought stock in a company that makes nursing pads, I went through so many of them. Even when Kaia would start sleeping longer at night, my breasts would wake me up at night, heavy, leaking and demanding a release. I also had to pump “off the top”, or pump off the foremilk, before breastfeeding Kaia. I had so much milk that the initial letdown was so powerful and there was so much of it that it would overwhelm Kaia. I would usually pump 2 oz off each side before feeding her. Since I routinely pumped 6-8 oz off each side she still had plenty of milk and she would receive more of the higher fat hindmilk.

There was one advantage to an abundant milk supply. The weight that I had gained while pregnant - the recommended 30 pounds - literally melted off during the first months after Kaia was born. I didn’t do a special diet or exercise program. It just came off. I figured out that I was expending 800 calories or more each day producing breastmilk.

When Kaia was a couple weeks old I went to a La Leche meeting. I thought that I was looking for support and encouragement. Really, I think I just wanted everyone to treat my breastfeeding experience the same. Everyone there focused on how Kaia was different: her cleft. I was already getting used to that and would continue to do so. However, I didn’t feel like it was a great help to go. I also had this underlying feeling of inadequacy as a breastfeeding mom because we were using the nipple shield. That artificial device felt, well, it felt so artificial. So unnatural. I didn’t feel like we were truly breastfeeding. I grew to hate the nipple shield. I had to wash it after each feeding and have it handy for the next feeding. I’d be upstairs ready to nurse Kaia, breast out, and realize the nipple shield was downstairs, freshly washed next to the sink. I lost one and we joked that we’ll find it when she’s 3. She 19 months old now and we still haven’t found it.

I didn’t return to La Leche until Kaia was 7 months old. When I did, I met the most inspiring woman there. Her name was Melissa and she too had a child with special needs. Her daughter had low muscle tone like Kaia, but required a g-tube. Melissa had kept pumping for months to supply her daughter with the best nutrition available – her breastmilk. I was so encouraged to see her there. I thought, if she is comfortable and is able to find encouragement here then so can I.

Eventually, after so many feedings with the haberman, Kaia started to get nipple confused. The week right before her surgery at four months of age she went on a nursing strike and refused to breastfeed. I was so worried that she wouldn’t remember how to breastfeed after the surgery. Of course, I continued to pump to maintain my milk supply and to provide expressed milk for her in the haberman bottle.

The plastic surgeon’s office gave us a syringe/tube contraption to use to feed Kaia after the surgery. We tried it a few times in the weeks before her surgery. It didn’t go so well. Babies have a suck/swallow reflex and there was nothing for her to suck on. We just squirted the milk in her mouth with the syringe tube and she didn’t know what to do with it. I anticipated there would be difficulty after the surgery but the nurse and doctor reassured us, saying we’d be surprised how quickly babies catch on to using it when there is no other food source.

Kaia had her surgery on a Monday morning. It was a very difficult day. She emerged looking swollen and was extremely lethargic. We brought her home the next day even though she hadn’t been drinking with the syringe well. She was so lethargic still. More on this to come in a later post; I want to stay on topic here. By Thursday she still was not drinking from the syringe. I was worried about her hydration and her ability to heal if she wasn’t getting nutrition. Her plastic surgeon finally relented and told me to breastfeed her – but to do so without the nipple shield. She couldn’t have anything that hard near her sutures. A breast by itself is soft enough so that it wouldn’t damage those delicate tissues. I was so nervous. She wouldn’t breastfeed the week before surgery with the nipple shield and had never breastfed without it. Would she recognize that this is where the milk comes from and latch on and drink? Gingerly I held her on our living room couch with Paul sitting across from me. He looked on encouragingly while I held her and showed her the nipple. I slowly and carefully brought her to the breast. Miraculously, she latched on and was so thirsty she didn’t stop nursing for 20 minutes. She came away looking extremely tired and content. When I lifted her she belched loudly. I was crying tears of joy. I was so thankful that I had made the commitment in the months prior to persevere; for all the pumping.

I was still concerned that Kaia wasn’t able to suck efficiently enough to get a sufficient quantity milk so I rented a hospital baby weigh scale, like the kind we had used before and after feedings in the nicu. For a month I weighed her before and after every feeding. There are few resources and research on how much breastmilk babies drink. I found one at: http://books.nap.edu/openbook.php?record_id=1577&page=82 It said babies her age drink 19-30 oz breastmilk per day. Surprisingly, breastfed babies do not increase by much the volume of breastmilk that they drink as they age. Rather, the composition of breastmilk changes as the baby ages. Kaia usually drank between 15-25 oz per day and continued to gain weight consistently on her growth curve. The first month after her surgery, Kaia breastfed exclusively. Breastfed au naturelle, no nipple shield! Hallelujah! The word bottle became a dirty word around our house. I was so thankful that Kaia was breastfeeding I was determined that she would not become nipple confused again. I was completely committed to breastfeeding at every feeding.

Since she was only 5 months old and I really wanted to maintain my milk supply, I continued to pump, usually 3-4 times a day after feedings. I wasn’t sure that Kaia had an effective enough suck to maintain my milk supply. I believed she was able to get the quantity of milk she was getting because I had such an abundant supply and powerful letdown response due to all the pumping. Everyone else told me otherwise. Why are you still pumping? La Leche, lactation consultants, her occupational therapist, even my husband all asked. If she is getting that much milk she should be able to maintain your milk supply. She will take what she needs. I started to doubt my instincts. When she was 7 months old I returned my rented hospital grade pump and pumped sporadically after feedings a couple times a day with a used store-bought pump. My milk supply dramatically decreased. My period resumed. I knew that if I wanted to continue breastfeeding Kaia I needed to keep pumping after feedings to adequately stimulate a good enough milk supply for it to be easy for her to get the milk. So I rented a hospital grade pump again and returned to a prior pumping schedule, 3 or 4 times a day after feedings.

With all that pumping, I accumulated quite a supply of breastmilk. We had actually purchased a deep freeze early on because our freezer just wasn’t big enough to contain all of it. I (half) joked with Paul that all that breastmilk was my life insurance policy. If something had ever happened to me, I knew that Kaia would continue to be able to get the best nutrition for quite some time. Eventually I realized that she would never need all that stored milk. I read about Indiana Mother’s Milk Bank and started the process to become a milk donor. It isn’t the easiest process and there is no benefit such as financial remuneration, but I wanted all that milk to be of use. Milk Banks screen donors, pasteurize donated breastmilk, and give it to NICU’s for preemies and to babies whose health is best served by drinking breastmilk. I think they were genuinely shocked (and very thankful) when I showed up with several large coolers full of breastmilk.

At just over six months, Kaia had started solids as well. I kept getting pressure to increase her solids and have her drink from a sippy or open cup. Until Kaia was 11 months old, we offered breastmilk in an open cup. We noticed her having a wet rattly breathing sound after she drank from an open cup. Upon the suggestion of her Occupational therapist, Kaia had a swallow study done. They couldn’t evaluate breastfeeding in a swallow study, but they found she was aspirating all consistencies; thin liquids, thickened liquids, purees, and solids. Again, more of this subject to come in another post in the interest of staying on topic. The speech therapist that did the study told us she should be admitted right away to insert a g-tube. Kaia’s pediatrician disagreed. Two other doctors that we saw over the next week agreed with him. She was gaining weight on her growth curve and had never had pneumonia. Both would be likely to have happened if she truly was aspirating. The pediatric GI doc encouraged me to continue breastfeeding her as long as I was willing. You’re doing something right, he said.

Something right, indeed. No ear infections, no major illnesses, no pneumonia. All common for kids with clefts and especially kids that are aspirating the way Kaia was supposedly aspirating. It makes me wonder how many kids have feeding tubes inserted that don’t really need them. I am not in any way questioning the parents of these children. I just knew that the right decision for our daughter wasn’t a feeding tube. We couldn’t believe that she needed one. We felt if it were true that she was aspirating she would’ve been sick. Not only had she been healthy, she was gaining weight. It didn’t make sense. We weren’t going to put a feeding tube in our daughter and invite all the negatives that go with that (oral aversions, risk of infection) when there was no sound reason to do so.

So I continued to breastfeed her. And I continue to do so. The challenges have changed but persist. Kaia has gone on several mini nursing strikes, usually when her routine is off. Travel days of vacations are usually tough, although many times she has nursed well on planes and fallen asleep doing so. Since about 7 months on, Kaia prefers to breastfeed in a darkened, quiet or noise machine-d environment. I usually feed her in the same rocking chair in her bedroom, whereas at first she would breastfeed anywhere. She went through a period of biting at around 9 months. I used the technique of saying “no bite” in a very firm voice and setting her on the floor for a short time. The biting ceased very quickly. Now she will play and lick at the nipple at the end of a feeding. She has almost all her teeth now; a baby beginning to bite does not equate an inevitable stop to nursing.

Over time, Kaia and I developed a rhythm of breastfeeding. I found holds, or breastfeeding positions, that were the most comfortable for both of us. Instinctually, I developed techniques to assist her feeding that I had never seen other breastfeeding moms do, at least in public. I would lean slightly forward over Kaia, so that gravity could assist with letdowns. I also used the method of compression during feeding to keep the milk flowing, and used hand expression, especially at the end of feedings, to completely drain the breasts without having Kaia needing to work so hard and tire with feeding.

We are slowly weaning. Kaia is nursing on average 3 times a day now. I still get pressure to wean more and quickly. She isn’t eating more solids because of the breastfeeding, people have said. She isn’t drinking more from a cup because of the breastfeeding, people have said. A select few people are vocally supportive of our continued breastfeeding. We finally found a cup that worked for Kaia (her wonderful OT recommended it). Kaia drinks well from it on the rare occasions when I am away from her and she misses a breastfeeding. She doesn’t the rest of the time, because she is getting enough milk from me. I don’t worry about it anymore. I know she can drink from a cup and the time for sole cup drinking will come soon enough.

I feel so fortunate to have been able to fulfill my dream of breastfeeding my little girl. I didn’t have many breastfeeding role models, and even the ones that I did have didn’t understand how breastfeeding a baby with special needs was different. I truly feel like if we could do it, almost any new mom can. I especially want new moms of children with special needs to know that it is not an absolute that their baby will not be able to breastfeed. It does take more commitment. It’s a commitment that has been so worth it for us. I share our experience here to give hope and a realistic view into how breastfeeding a child with special needs is possible.

Vacations on the cheap

2009-01-27T12:21:00.000-08:00

Living in Indiana is made bearable by the number of vacations that we take. We probably traveled a little less last year than we did before having Kaia, and we still traveled quite a bit. Last year we all flew to Kauai in January, Paul to Minnesota and myself and Kaia to New Hampshire in February, to the Bahamas in May, to Minnesota, North Dakota, and Marco Island, Fl in June, to South Carolina and myself to Boston in July, to Big Sky, Mt in August, to North Dakota a few times in August and September, to Mazatlan, Mexico for Thanksgiving in November, and myself to New Hampshire in December.

But, I think people would be surprised to find out how little we actually spend on vacations. First of all, all that air travel cost us less than $600 total. It cost so little because of my husband’s awesome job. He works for an airline and thus gets free or incredibly reduced travel benefits. There is a catch, though. We fly standby and have learned to be very savvy about how we fly. There are the “non-rev rules” for increased likelihood of boarding an aircraft. You must attempt the first flight of the day. Check loads. Check again. Then check again. Always have a backup plan. Don’t dismiss travel on or over holidays.

Before last year, we traveled quite frequently but usually stayed in, um, how shall I say, a more modest type establishment. Well, let’s be honest, we stayed in dumps. They were cheap. We never really cared b/c we got to go to amazing places and see incredible sights. We stayed in a convent in Rome and a dormitory turned hotel in the summer in Montreal when we had Lasik surgery there. There is so much character in places like that.

During our travels we sometimes had the opportunity to stay in timeshares which generous friends gave us as gifts or for cost (the reservation booking feeand guest certificate fee) b/c otherwise they would lose it and they didn’t have funds or vacation time to use it. We attended the timeshare sales pitches but never even considered buying. It seemed like such a rip-off. Then we attended one in Hawaii. The salesman there explained a little secret in the timeshare business that would suit us perfectly. But there was no way we were going to buy there, from him. It was way too expensive.

There are certain fees associated with timeshare purchases. One is the upfront purchase price. Then there are closing costs, annual maintenance fees which vary wildly depending on where you buy property, and annual points membership fees. Once you have an account, you pay a reservation fee each time you make a booking. The key to finding a good deal is to find a timeshare with the lowest constant costs: low annual maintenance fees and the highest corresponding value of points. The maintenance fees are the cost that varies considerably between locations. So do the point values.

However, we didn’t need a lot of points b/c of the tip that the salesman in Hawaii told us about. With RCI, within a 45 day window, “weeks” resorts will let remaining vacant units go for 9000 points or less. Some of those same units “cost” 60,000 points or more if you book more than 45 days in advance. During the 45 day window, many go for less than 9000 points. The least that we’ve seen is 6000 points. But we never plan our trips more than 45 days in advance. We don’t know what flights will look like that far in advance. So it suits us perfectly.

We bought our timeshare on ebay. We bought a place in Florida that very likely we will never visit. However, it had low annual maintenance fees and enough points for us to take at least 2 week long vacations with points each year. Being timeshare owners, we also found that we have access to their last-minute deals, called last call, which allow you to book units within the next two months without using any points at all. The costs for these units are very reasonable: $250 for a week in a 2 bedroom unit, $225 for a 1 bedroom and $200 for a studio. Usually resorts let places go for “last call” when it is off season or when they are new resort, or they are just not filling to capacity for whatever reason. We added my in-laws, who are retired, as owners on our points account so that they could access this benefit without using a guest certificate (which costs extra). They just got a place in Florida, last call, for this week. It was great. We went down for the weekend to stay with them. I just cannot believe what a great deal it is.

Now, I know what you’re thinking. It all sounds great, but what are the actual numbers? Show me the money, right? So, let’s compare apples to apples. The salesman in Hawaii wanted to sell us a place in Hawaii for $14,000. The associated point value was 60,000 per year. The annual maintenance fee was $850. Then there were closing costs of $2000 and the annual points membership fee of $125. Audible gulp, at least for us.

We bought, on ebay, a place in Florida for $350. The closing costs were $450. The annual maintenance fees are $285. Our annual points membership fees are the same, $125 per year (there are no deals on those unless you prepay for several years, which we actually did for $100 per year). The points value is 35,000, every other year, or 17,500 points each year. It gives us a little less than 2 weeks vacations each year at 9000 points each. We can choose to look for places that are less than 9000 points per week or we can “rent” points from RCI for the low price of 2 cents per point. So, if we needed to rent 500 points, it would cost $10. I think there may have been a minimum/maximum number of points that you can rent, but we haven’t had to do that yet. We’ve always found places for less than 9000 points if that’s what we needed to do. We also focus on the last call specials available if we don’t want to use points. We could also “borrow” points from ourselves, from future points years, if we didn’t want to “rent” extra points. We haven’t had to either so far. And, the best part, we can access all the same resorts that buying into that expensive Hawaii timeshare would've allowed us.

Our constant annual outlay, not including the initial costs of purchase, is only the maintenance fee and points membership fee. If we use points, we also pay a booking/reservation fee of $164 for the week. Our timeshare vacations this last year included a 1 bedroom unit in Kauai, a huge studio in the Bahamas, a 2 bedroom huge place on a lake in Big Sky, MT, and a gigantic 2 bedroom place on the water in Mazatlan, Mexico. Only Kauai and Big Sky required using points, the Bahamas and Mazatlan were “last call” specials. Our total annual cost for all these places was:

Points membership fee: $100
Reservation fees: $164, $200, $164, $225 (these vary based on resort but the most we’ve paid is $250 for a last call)
Points used: 18000 (only Kauai and Big Sky required using points)
Annual maintenance fee: $285

So our annual cost was approximately $1138.
The upfront purchase cost that we spent of $800 I think is fair to divide over, let’s say 10 years, so we can assume an annual cost of $80 for that.

To be fair, many of the resorts charge “hidden” fees, like a state/visitor tax (you’d pay this in a hotel, too), a cleaning fee, electricity or a/c fee, etc. However, they are all clearly indicated before you book the resort so you know what you will have to pay. Last year Kauai and the Bahamas had visitor taxes in the amount total of around $100. In the interest of full disclosure, sometimes resorts will charge extra for wifi access or extras like cribs or highchairs.

So our total annual cost, including divided upfront purchase and hidden fees, last year was $1318. For 4 weeks of vacations in what I consider luxurious condos, that comes out to $329 per week, or $47 per night. Not too shabby, huh? We couldn’t even get a dump in Lihue, Kauai for that price.

Vacationing with a child really makes this a bargain. Considering the alternative of sharing a hotel room or booking multiple rooms, the convenience of having a kitchen and many times multiple bathrooms (many of the 2 bedroom units have 2 bathrooms as well), staying in a condo is much more comfortable.

I’m not saying everyone should run out and buy a timeshare. I just wanted to share how we’ve found a way to go on vacation for a price that fits into our budget. I think we enjoy vacations even more knowing that we are doing them in a financially responsible way.

Come out, come out wherever you are

2009-01-21T18:25:00.000-08:00

Sometimes when I go to moms groups in the community or to storytime I feel very alone in having a child that is different. I know that there other children with special needs out there. I just don’t see them. They don’t attend the groups or go to the library storytime. I know it’s hard to get out with a baby, period. Then, when you have a baby that is different, it makes it even more difficult. There may be special equipment to tote like wheelchairs or walkers. Not uncommonly there is the issue of being overscheduled. Lord knows, a therapy schedule can really restrict opportunities for outings. Then there are the comments - the unthinking, insensitive comments that people make out of a place of ignorance. Those comments can make you feel like never leaving the house in order to protect yourself and your child from that surprising sting of hurt.

More than a handful of times I have left groups of typical kids in tears. Not because of the children. It’s most often because the other moms focus on how Kaia is different. I know my daughter is different. But there is so much more to her. She is a typical child to me. She has a whole host of features that are beautiful and stand out on their own merit. I will never forget the people, who upon first seeing/meeting my daughter, didn’t focus on how she was different physically (her cleft) - people whose first question wasn’t “when will she have surgery?”

So, on the rare occasion when I have seen mothers out with their children who are different, who have a physical disability or other quality that sets them out of the typical range of development, my heart sings. I feel a kinship with these mothers. I know how hard it can be. But no matter how hard it is, I feel strongly that it is important that Kaia get out in the world. It is so meaningful for my daughter to see typical kids playing and for her to have the opportunity to interact with them and learn from them. She studies them with a scholar’s concentration at playgroups. I also know how important it is for them (and their mothers) to see her – to realize that there are people whose abilities and appearances are different and that they belong in this world too. So I’ve persevered in making the effort to get out in the world with my daughter. She deserves it and so do I.

And, please, when I joyously share at storytime that my daughter, at 16 months, is learning to stand independently, or at 18 months, that she is learning to walk and it is an extremely exciting time around our house, or at 15 months, that she made her first sign, feel free to celebrate with me. I am not bemoaning her development and achievements, I am rejoicing in them.

And to all the mothers of children with special needs, please come out, come out wherever you are. I need you, my daughter needs you, and all the typical children and their mothers need you. Heck, the world needs you.

A magical carousel ride and a special thank you

2009-01-20T18:57:00.001-08:00

My sweet friend Karen was nice enough to invite us to the Childrens' Museum this weekend. This picture of Kaia and myself on the carousel ride was taken with her camera. Doesn't Kaia look like such a big girl? She is growing so fast these days. I was gone for 2 hours this evening and when I came home, I could've sworn she had grown in the time I was out.

Thank you Karen for inviting us and for documenting the morning with photos. I am really so thankful to have such a good friend. Karen has a typically-developing child that is the same age as Kaia within a week. We met when they were just 5 weeks old. Her husband and my husband have the same birthday within a week and so do she and I. How odd, right? Karen is always on the lookout for resources for Kaia for us. She forwarded me information about a group of moms with kids with special needs that has been an incredible source of support. She was never intimidated by Kaia being different. We've commiserated the challenges of new motherhood as our children go through the same phases. It's been nice to know a mom of a typical kid the same age as Kaia and to realize that so many of our daily challenges are the same, whether our child has special needs or not. So thank you, Karen, just for being you.

The stars were aligned

2009-01-17T13:11:00.000-08:00

Last night was an exciting night. We went out for dinner and decided to brave fate by eating at what I dub a "sit-down" restaurant. Some of you may recognize that term. I don't exactly know where it came from but what it means is a restaurant that has a waiter who comes to take your order and brings you your food. It's not a buffet (our restaurant choice of late b/c it doesn't matter if the food gets cold when baby fusses, you can always get more) nor a fast food restaurant. Anyway, we rarely eat at them these days, as I describe in another post. Last night Kaia was very fussy before we left the house. I was concerned that it was going to be a bad dinner experience. However, once we got to the restaurant she was fine.

A couple things helped. First, we went to Applebees. We had never been there with Kaia in tow. They have great highchairs. None of those generic wooden high chairs. These actually were a little more supportive and allowed her to sit closer to the table. I also brought more goodies in her goody bag. She had her crayons (the hostess also gave her some), several books, a dolly, etc. And her favorite: a shaky ring rattle that fits perfectly into a generic onion soup mix box. She loves to take it out, shake it, and put in back in. Over and over.

I broke out her rubbermaid straw cup with her thickened milk and she did the usual - completely rebuffed it and continued playing. She played nicely throughout our whole meal and charmed the manager and server as I described in the post below.

Then we got our dessert. One of those dessert shooters things. The hot fudge sundae kind.

Kaia has been entranced with our adult metal spoons for a while now. She has been working on scooping with them in therapy and with us outside of therapy. She's got the scooping thing down cold. She just won't bring the food to her own mouth. She will feed us, the dolly, or fling it to the floor, but she won't feed herself. Last night, at the restaurant, she still wouldn't feed herself with the spoon. Frankly, I wouldn't even let her try there b/c it would be a huge giant fling fest mess.

But, the look on her face when she finally let me give her a taste of the ice cream. It was like this surprised, "wow, what in the world is this tasty concoction - I never knew food could taste like this" look. So we bribed with the ice cream in order to sneak in bites of all her other food, and she ate like a champ.

This wasn't the first time that we've given her ice cream, but really the first time that we've gotten that reaction from her. After I had just told her nutritionist, OT, and speech therapist that against all standard therapy advice, she didn't like cold stuff. Truth is, for the past few weeks, she hasn't. Of course, just when we think we've got Kaia figured out, she changes the rules of the game.

I'm not sure that this is the best way to feed her (bribing with bites of ice cream), but at least she ate. At a restaurant. I consider that progress.

Body Parts

2009-01-17T13:02:00.000-08:00

An update on Kaia's body parts identification. Since my first post on Jan 3rd, Kaia has progressed from being able to identify her belly button when asked, to now also being able to identify her hair, nose, ear, and is learning her mouth and toes. It's so cute - she will shake her head when we ask her, "Where's your hair?" Then, we ask her to touch her hair she will do that. Sometimes she gets confused and will point to a different body part but most of the time she gets them right. The manager at the restaurant last night stopped by our table to chat and told Kaia how pretty her hair looked and she immediately put both hands to her hair. Then she waved Bye Bye to him when he walked away. I think he was very charmed. Who wouldn't be?

Winter Wonderland

2009-01-14T18:13:00.000-08:00

Speaking of snow....we decided to get right out in it tonight. It was a beautifully snowy day here in Indiana today. Everytime I looked out the window I felt like we were in one of those snow globes with the snow swirling romatically. So this evening we put all of Kaia's new snow gear on her: her new boots, snowpants, parka, hat and mittens. She didn't like the getting ready part so much. That fancy sled you see in the pictures was handmade by Grandpa Dennis for Christmas. She wasn't too fond of it in the house but once we got her moving in it outside, she loved it! A great five minutes of family fun - then we decided to get Kaia in before she got frostbite! Getting a toddler ready to go out in the cold is like waiting 45 minutes at six flags to go on a 2 minute roller coaster ride. It's a long wait but the ride is worth it.

Activity & toy ideas for snowy days

2009-01-14T11:40:00.000-08:00

Kaia's developmental therapist gave us such a great list of toys and activities that I thought I'd share it here. We haven't even done all of them yet. He also shared a play dough recipe that is supposed to be better (last and stay flexible longer) than store-bought play dough.

1) microphone (singing, imitating words)
2) personal photo books (self concept)
3) echo or voice distortion microphone (imitation/language)
4) Discovery Toys ball tower + various balls (cause/effect, big/little)
5) Velcro fruit (pretend, matching)
6) ‘color of the week’ box (not sure what this is - we haven't done it yet)
7) cookie/cracker matching game (match object to picture)
8) catalogs & sale fliers (rooms in house, language)
9) stickers on faces in a mirror (self-concept)
10) ‘ball pit’ in a clothes basket (find hidden toys, sensory)
11) Lucky Ducks game (color match)
12) Leap Frog basketball (letters, etc)
13) Finding objects in rice (sensory)
14) Magnet fun (United Art & Ed, or fridge magnets & cookie sheets)
15) Stringing bears (fine motor, colors-Dollar Tree)
16) Pull toys that make noise (cause/effect, sensory)
17) Give objects to boy/girl on felt board (gender identification-Dora, etc. felt boards at Meijer)
18) Nesting blocks (size & spatial concepts)
19) Toy in child’s hand during clean up song
20) Finger plays (Tiny Tim Turtle, etc- imitation/language)
21) “hello” song & ‘homemade songs’ (social interaction, language)
22) Play dough (language, pretend, sensory)
23) Tape player & songs (language, sensory)
24) Toy people & who is it? Game with a toy door (turn-taking,language,make-believe play)
25) Sorting game-2 kinds of toys or snacks in separate containers)

Homemade Play Dough

Add to large (pasta) pot:
2 cups flour
2 cups water
1 cup salt
¼ cup vegetable oil
3 teaspoons cream of tartar
food coloring of choice
scented extract (vanilla, almond, etc-optional)

Stir constantly over medium-high heat until mixture is one large ball

Remove from heat and knead on cutting board until smooth

Store in air-tight container(s)-ziploc bags or Tupperware & keep in a cool place (fridge, etc). Lasts at least 1-2 months

Eating Out

2009-01-13T12:16:00.000-08:00

B.C., or Before Child, Paul and I enjoyed going out to eat. We enjoyed it so much that we ate out often, more often than we ate at home. A.C., or After Child, we still enjoy eating out but it rarely happens. Early on we tried to go out to eat but I found it just wasn’t that relaxing of an experience. Kaia would get fussy or needy and one of us would have to soothe her or I’d have to nurse her. Meanwhile, expensive restaurant fare sat on the table getting cold. It bothered me to spend the money on restaurant food and then not be able to enjoy it. So, we saved going out to eat for when the in-laws could make it into town to babysit (about once a month), or monthly Parents Night Out, and enjoyed those precious dinners out even more. When Kaia was about 15 months old I decided that it was something I missed too much and that we were going to make a commitment to try to eat out once a week as a family. Occassionally we’ve had those magical dinners out where all the forces of the universe collide to make a perfect family dining experience: Kaia eats well, behaves well, and entertains herself in the restaurant-provided highchair while we eat our overpriced restaurant fare in marital bliss. However, there are times when she gets fussy and needy. We’ve actually walked out after ordering(of course we informed the waiter) b/c she was so worked up I knew there was no way we were going to be able to eat and it was disturbing all the other customers. That time was probably partly our fault b/c she was getting close to naptime.

However, the last few times we’ve been out to eat as a family we’ve encountered a new challenge. Kaia refuses to eat or drink anything. I know that she’s hungry. She will chow down when we get home and put her in her highchair. But at the restaurant, she won’t drink, won’t eat her own foods that we’ve brought, won’t touch any restaurant food. Nothing, nada, zilch. She behaves just fine; she just won’t eat.

I am afraid we’ve created a highchair monster. She has a space saver highchair at home, the kind that straps on to a regular dining room chair and has a tray. I’m glad that she eats in her highchair. I just want her to be a little flexible. In the restaurant highchairs, the table hits her right above chest height. It’s a little high for her to drink from her straw cup and keep her chin tucked for easier swallowing. They also have a lot less support. We usually snug her or our coats around her to keep her supported around the trunk. The other factor when eating out is a distracting/different environment. I don’t know what to do about that. That’s the whole point of eating out – to be in a different environment.

One of her therapists suggested we use her portable travel highchair, which also has a tray, at home for a while. Then, when we go out to eat again, she suggested we bring it to the restaurant for Kaia. Great suggestion but the actual implementation, frankly, is going to suck. That’s a lot to lug into a restaurant. But, if it is the only way, we’ll do it.

Does anyone else have any other suggestions? Did/do your kids do this? Was it just a passing phase?

Caregiver Support Respite

2009-01-08T12:55:00.001-08:00

Is your child on the waiting list for a medicaid waiver? If so, and you live in Indiana, then you may be eligible for caregiver support respite. (I say may be eligible because I am not absolutely sure to which waivers this applies. My daughter is on the waiting list for the DD and the support services waivers and these apply. I'm not sure about the autism waiver or others.) Caregiver support respite entails calling your local BDDS (Bureau of Developmental Disabilities) office and requesting a provider pick list. Once you receive the list, you can call and interview providers to make a selection. Many families have their chosen caregiver such as a relative (grandma or aunt, for example) become an employee of said provider, then the caregiver can get paid to take care of the child and it removes the financial burden from the parents. The amount of respite, I've been told by BDDS, is about $2000/yr; which works out to about 10 hours of respite per month. You can have it scheduled each week or use it for a vacation or emergency use. I've heard that with the long waiting list (last I heard in IN it is 5 to 7 years for the DD waiver), the state is "throwing a bone" to the families by providing caregiver support respite.

Our experience: We've had the provider pick list for over a month now. I've made a few calls to providers but I have to admit that I am struggling with this. Only Grandma and Grandpa (and of course her Daddy) have taken care of Kaia when I'm not around. We have left her for a couple hours at a time in the monthly Parents Night Out program a local agency/church offers also, and that has been difficult for me at times. I actually used to work at a provider in my former workplace life (I'm still technically an employee but haven't worked in a year now) and I checked out their website for respite care. I always said when I worked there if I had a child that needed services I would never use them. The situations we find ourselves in. I've worked for several companies though and said the same thing about all of them. I just saw too many employees come and go that didn't care at all about the clients and blatantly disregarded company rules and parental wishes. So I am really hesitant to utilize this with the lack of control over who actually comes into our home. I think the only way to have control over the individual that comes into the home is to do what I mentioned above (have a relative or other trusted person become an employee of your chosen provider). The only other way is for the person to get licensed (not sure if that's the proper term) through the state as a provider and I'm not sure how to do that. So, anyway, all that said, we are still considering this. I probably sound overprotective, it's because I know that I am! I did read some hints/tips for parents having respite care in the home (I can't remember the website right now or I'd link it here). One tip was to create a binder/folder with all your child's info in it for a respite worker unfamiliar with your child (code for an absolute stranger walking into your house). The other was to put keyed locks on rooms (like your bedroom) that the respite worker shouldn't need to access.

If you can't tell I am pretty nervous about doing this. But I know that hubby and especially me need a break sometimes so I am definitely trying to work through this. Do you use respite? Why or why not? Was it difficult for you and how did you work through it?

Medicaid Waiver - Vote again to fully fund

2009-01-08T04:34:00.000-08:00

Fully Fund Medicaid Waivers for the Developmentally Disabled
***ALERT: Make sure your VOTE counts. Click on the number to the left with "Vote" under it – it will change to “Voted”. National Priority for the Economic Stimulus Package: Fully Fund MedicaidFunding health care and services for individuals with developmental disabilities, disabilities and the elderly creates jobs, careers, business opportunities while filling a critical need.I propose that the federal government:1. Fully fund the Medicaid Waiver Program as part of the next Economic Stimulus Package. 2. Consider this as an increased federal match so that states are not put into an impossible situation.3. Create portability of services across states and counties as is allowed with Medicare and Social Security.Facts:*Across America, an estimated 300,000 people cannot obtain essential support to live and work in the community because of lack of funding.*Institutional care costs $88-$225,000 per person per year depending on the level of care. Community-based care costs $20-$75,000 per year (varies by state and level of care).* Waivers are not portable. Families cannot move out of state or even out of their current county in some places for military duty, to accept jobs, or to live closer to family because they must go to the bottom of decades-long waiting lists at their new location.Benefits of this proposal:1). Job creation in the form of service providers. $12-$15B per year would create an estimated 244,000 jobs.2). Community living costs less than institutionalization.3). Parents and affected individuals can return to their careers, earn income, pay taxes and obtain health insurance.4). Some families will come off public assistance which reduces overall tax burden.5). Families will be able to move to accept new jobs or military assignments.6). Improved health of affected people and caregivers.7). Reduced financial burden on aging parents.

Therapy-Free Days

2009-01-07T17:41:00.001-08:00

Therapy-free days are pretty few and far between around here these days. Kaia has a jam-packed schedule with speech therapy on Mondays, developmental and occupational back to back on Tuesdays, physical on Wednesday, and occupational again on Friday. On Monday we also try to get out to a toddler group and I try to keep Thursday open for storytime at the library. But the last month or so Kaia's PT has only seen her every other week due to vacation, so we've had every other Wednesday free for other activities. Today we went to a nearby church to check out their indoor play area. We had been to one other one recently that is further away, and they are such a great resource. Both are open all day every weekday and are free. That's right - you read that correctly, they're absolutely free. In the winter it's nice to have somewhere like that available when cabin fever sets in and weather prohibits going to an outdoor playground. We met a couple other moms and their kids there and it was nice to get out of the house and do something different. I wonder sometimes what it must be like to have a typically-developing kid and thus no therapies and to have all that "free" time. I can't imagine. I'm sure we would get out even more. I am so thankful to have all the therapies that Kaia receives, though. Her therapists overall are amazing and as a first time mom, it's nice to have all those sounding boards and sources for advice.

Welcome!

2009-01-03T16:12:00.000-08:00

Welcome to Special Insights! This is an exciting post for me. I've been wanting to start a blog like this for awhile now but am just finally getting around to it. As it says in the about me section, I have a beautiful daughter, Kaia, 18 months old now, with special needs. She has a rare chromosomal syndrome called 22q13 deletion, aka Phelan-McDermid syndrome, that causes global developmental delay. Kaia was also born with a cleft lip and palate, and a multicystic kidney. At 11 months age, she was also diagnosed with dysphagia (swallowing difficulties). On this blog I hope to document her amazing progress, to a couple ends. One is selfish, to keep a journal of sorts of her early years; another is to communicate in an efficient manner all that is new in her world to those family and friends who are interested; and the last is to provide support and encouragement to, and to connect with, other families with kids with special needs. The first several months of the blog I intend to flashback a bit in order to record some of her earlier life. I will try to be as honest as I can about the joys and challenges of parenting a child with special needs.

We have something incredibly exciting to report today: Kaia is independently choosing to walk to her chosen destinations instead of crawling. This is more than the steps she has taken over the past couple months. Several times today she would go from one supported standing position to another via independent steps; usually by 2 or 3 steps. We weren't prompting or enticing her to do so at all; she just chose to do this. Later in the day we held a bowl with a block in it in front of her and she would go from a standing still position, take a few steps, stop and balance, then take a few more steps. It was great fun to have her walk around the kitchen this way. Very, very exciting. Of course after all that excitement I felt a renewed commitment to have her work on her trunk strength (her PT says this is key to her being able to walk well independently) so we put her on the ball and blew bubbles at her. She again approximated saying bubbles. (She had done that for the first time earlier this week). SO much new stuff today!

She is also walking much better with one hand held. She gets very impatient and intolerant of sitting in the cart while shopping. Today we were at Target, though, and instead of having her push the shopping cart, which she loves to do, I had her walk beside me holding one hand. The carts there are not so easy for her to hold into in order to push. I think she was frustrated that she couldn't push the cart and that I just wouldn't carry her (that's what I most often end up doing - and man, is she getting heavy), but she walked that way up and down a couple of the short toy aisles with one hand held. A few months ago she would just fall to the side almost immediately when we tried to have her walk with one hand held instead of both hands held. I can really see the progress when I think about that.

Kaia is also getting closer to being able to stand from on the floor. She will now do "down dog" yoga pose upon a verbal prompt and even just when she feels like it, and just needs physical help shifting her weight back onto her heels to stand. She seems so proud when she does it.

Also new this week: Kaia can consistently find her own belly button with a verbal prompt (she has been fascinated with ours for a couple weeks now); and she is babbling again after several months lapsed. She is also squatting much more from a supported standing position (holding on to the table with one hand) while she squats to retrieve an object on the floor and return it to the table with the other hand.