Loaner Wheels

The order has been put in for Whitney's wheelchair. We decided on the Convaid Cuddlebug. However, it will still be a while before we get it, so in the meantime we are borrowing an older Kid Kart wheelchair from the store that ordered her wheelchair. They had a family donate this one when their child outgrew it, so we were able to use it for a while! Whitney loves it so far. As you can see from the photo, the boys like it too! They think it's cool and are fighting over who gets to push Whit around in it! It makes me feel good that they are so proud of their sister. I thnk it is beneficial for Whit to have THREE big brothers! I dare anybody to ever pick on her :)

Here's a video of Daddy playing with Whit a couple of nights ago. I thought it was so cute.

Whitney's New Gait Trainer

I am so excited because Whitney's Physical Therapist brought a Rifton Pacer Gait Trainer to our house today for Whitney to borrow and she LOVES it! She is doing so well cruising around in it. It has straps and supports that hold her torso in place while she uses her feet to move along. This is exactly what she's been needing. Here's a video of Whit showing off:

Watch Out....She's on the Move!

Whitney has become much more mobile lately. She has got the army crawl down and will not stay in one place. She is all over the house. As much as I'd like to keep her off the cold tile, she insists on scooting around on it. She literally cannot be left alone for more than a few minutes because she will get into something! You have no idea how happy that makes me :) Her favorite places to go are the laundry room and the pantry. She always finds something fun to play with on the floor in these rooms. She has also learned to stay away from Lilly's cage (our new puppy). We keep Lilly in an icrate in the kitchen when it's too cold outside and she is quite the nipper. She has some sharp little puppy teeth. Whitney has learned not to stick her fingers in the cage because we have warned her that "Lilly bites!" She will creep over to Lilly's cage and get really close, but then she looks over at us as if to ask, "Does she still bite today?" We say in a low voice, "Lilly bites." And she backs away and scoots into another room! I took a short video of Whit army crawling in the kitchen...

I have also been working with Whitney on walking with a gait trainer that her PT let us borrow. It is so exciting to see how much she's improved with the gait trainer. She used to cry a lot when we used it, but lately I can't keep her off of it! We keep her equipment in the dining room and she will scoot into the dining room and try to use the gait trainer without us! I have had to watch her more closely because she hasn't gotten the hang of pulling herself up unassisted yet and I'm afraid she's going to hurt herself without our help. She is really acting like she's ready to start learning to walk with the gait trainer, but I really want to get her a gait trainer like this Kid Walk that she can use on her own without us holding her hands in place and keeping her from falling. As you can see in the video below, she is still really unstable in the torso and with the Kid Walk gait trainer, she would have straps around her torso and a piece in the center crotch area that would help stabilize her and give her the feeling of independence that I believe she needs to start moving on her own. I am going to talk to her PT about either borrowing a gait trainer similar to the Kid Walk or finding help to purchase one of our own. I am still fighting hard to find help with the expenses of medical equipment, but am having no luck so far. She is also due for some new orthotic braces and I'm afraid she is going to need the taller version next time. She has begun turning her left knee in when standing with help whereas before it was only her feet rolling in. The equipment is all very expensive, and even with insurance we are still responsible for a large chunk of change.

We are also still working on getting Whitney a stroller that is adaptable to her needs. I was told about a stroller for special needs children that is similar to a real stroller, but with more support. However, I have been researching and have decided that it would be better to get a stroller that is also the right height to push up to a table and be used as a highchair. This way I could use it at restaurants, etc. We are currently carrying around a stroller and a portable high-back high chair in our car for her to use in restaurants. She is unable to use a typical restaurant high chair because they do not have a back on them and she tends to throw her head back randomly. We are using this high chair, which works great for now, but she is very close to outgrowing it. That is why I'd like to purchase a Leckey Squiggles Seat with Safari Tilt base. It offers the support she needs and is at the appropriate height for eating at a table. Whitney will be 2 years old in a few months and I'd like her to start "sitting" at the table with us. I can't believe she's about to be 2 in May!!! That is so crazy. She's still such a baby to us and I'm loving every minute of it!

Cook Children's has also moved her swallow study from February 4th to February 9th. This will work better for us because Jason will be off work that day and won't have to find someone to trade days with him. I also want to speak with their Speech Therapist who will be there for the study and ask what other services are offered for kids that are this far behind with eating. As you can see in pictures, Whitney is not missing any meals, but I firmly believe the earlier we can get her feeding herself and chewing food, the better her chances will be in the future for regular eating habits.

We are still working with her standing frame too. It is also made by Leckey Squiggles. I have loved this standing frame because she can stay in it for up to an hour a day. I try to play her sign language DVDs while she's in the standing frame. She's a captive audience during this time and I'm hoping she's absorbing the info. I've even got the boys watching the DVDs and working on signs with her. They love it!

There are also many other therapeutic treatments I have come across while reading other children's blogs such as Thera Suit Therapy (VERY expensive) and Hyperbaric Oxygen Therapy along with many other programs that seem promising. However, after reading these blogs about other children it is apparent that most of them have help from either government agencies or private donations. As I said before, we have been denied by every program that I have applied for. But, we will keep trying and find a way to help Whitney by offering every piece of equipment and therapy that we can.

Swallow Study Scheduled

We got a call today from Whit's Pediatrician's office. We finally have a swallow study scheduled at Cook Children's Hospital on February 4th. I am very anxious to find out what it shows. Whitney is still unable to eat anything but pureed baby foods. She can't even tolerate regular food that has been mashed in a food processor because it's too clumpy. Some of her baby foods even have to be "watered down" with milk or formula. She gags way too much for a child her age (19 months). It is frustrating not to be able to put food on her highchair tray and allow her to feed herself, but that is but a minor roadblock in the big picture. I just want to be assured that there's nothing anatomically wrong with her, especially since she had a cleft soft palate at birth. I pray that someday Whitney will be able to eat pizza and chicken nuggets with her brothers. Hopefully this test will show either no problem at all or will guide the doctors to fix whatever the problem may be.

On another note, I am frustrated beyond words with the "system." Before having a child with disabilities I had no idea how expensive things were for these families. Therapy, doctor visits, prescriptions, adaptive equipment, surgeries, mobility devices, etc. are so costly. To top it off, our precious U.S. government and state services are impossible to deal with. We do not qualify for many programs due to income levels (though we don't make much for a family of six). We have been put on waiting lists for programs that offer help to children with disabilities. Some of these programs may take years for our name to come up, and others we may never see. Luckily we are able to utilize ECI (Early Childhood Intervention) services for Whit's therapy sessions, but that will end when she is 3 years old as their program only covers children up to that age. I have been around and around with each entity trying to find help with paying for equipment and medical bills only to be turned down (medicaid, social security, children with special health care needs, etc.) If anyone knows any tricks or has any advice, please pass it along! Whitney desperately needs a wheelchair/stroller and it doesn't look like our insurance is going to be very helpful. These devices typcially cost around $3,000-$4,000. I have looked for used chairs and equipment too, but it is difficult to find pediatric equipment that is in good condition or that fits little tiny girls. It saddens me that this is a problem for so many families with handicapped children.

In the meantime, here is a video taken today of Whit and the many new tricks she's learned recently.

Whitney's Christmas

Whitney had a great Christmas. We had Gigi at our house for most of the holiday and spent time with the King side of the family. Whitney enjoyed watching me open her presents on Christmas morning. We tried to get her to do it, but she wasn't so sure. She got some really fun new toys and a dollhouse. Whitney has begun dancing to music. She loves her little piano/keyboard and, as you can see in the videos, she really gets down to the music!

We also traveled to San Antonio with Gigi for a few days just for fun. Whitney enjoyed strolling along the river. We are excited because Whit will be getting her first wheels! She doesn't do well in a regular stroller because her trunk control is not very good. So, in order for us to tote her around in a posture that is both comfortable and good for her we will be ordering a pediatric wheelchair. It is called a wheelchair, but it actually looks very much like a typical stroller frame with a special seat that supports her torso, neck, back and head. I think she will be much better off. I tend to stick her in the stroller quite a bit when I'm running errands or taking the kids to soccer, etc. So, this way I won't feel bad about leaving her in it to watch games or shop. It will probably take a few months to get the new wheels due to insurance and doctor orders, etc. It is very expensive, but so worth it in the long run.

We are still working on crawling. As you can see in one of the videos, she will put herself in the crawling position, but can't figure out how to keep her mid-section stable enough to make a move. She rocks back and forth in the position. She is still not talking, but she is beginning to follow simple commands like "push the button" or "raise your hand." I will try to get a video of that soon. We are so proud of her. She seems to understand a lot more than we give her credit for! I have begun showing her videos of sign language in hopes that she will absorb the signs and use them. She doesn't pay attention to me when I try to teach them (much like her brothers), so maybe this will be more on her level. We'll see.

Something interesting happened to me recently. For the first time I was asked by someone what was wrong with Whitney who had not previously known about her. I asked how they'd heard about her and they replied they hadn't, but that they could tell by looking at her that something was wrong. That was hard. By no means was I angered by the question, but it's just hard to finally realize that others see her differently. I sincerely appreciated his questioning it though because I want people to ask and not be afraid. I want people to understand that she is exactly like every other child in so many ways. I never want anyone to assume that she's untouchable or be afraid to talk to her. She is so "normal" to us that I often forget that she's anything else. It is hard sometimes too to see kids her age acting age-appropriately...running around, talking, sassing their moms! However, I've had that experience THREE times before, so in actuality it's almost a blessing! Whitney acts more like a 6-7 month old baby, and in my heart she will forever be my baby.

Things have changed in my way of thinking since Whitney came along. I used to dream about "one day" when I would be able to leave the house without kids or a stroller, buckling car seats, walking so slowly to hold a hand, etc. I always looked forward to that day when I could go workout or stop at the grocery store whenever I needed to without all the excess baggage. Lately, I've gotten past that. It saddens me to not know whether Whitney will be able to walk on her own without assistance or stay at home alone someday, but I do not feel sorry for myself at all....I feel blessed. As much as I hate all that she has to endure and all that she will have to put up with in her life, I feel so content knowing that she will most likely always live with us at home and that I will have her company every day of my life.

With the new year beginning I think of how grateful I am. Not only for three healthy, precious boys that I love more than life itself, but for this extra-special little angel who smiles at me when I don't deserve it. I am thankful for all that I have.