Whitney was officially diagnosed today with Static Encephalopathy. This is a condition of the brain that is similar to Cerebral Palsy. We saw her Neurologist today and he explained that her brain condition will stay the same (static) meaning that it will never get worse or better. However, she will learn to do things, just at a slower rate than the average child. For example, she started sitting up on her own at 13 months as opposed to about 6 months for the average child. She is still working with her physical therapist twice weekly and a speech therapist once weekly. She will also begin Hippotherapy (horses) next month. We are excited about that.
Having a "term" to call her problems is somewhat of a relief to me. It has been so hard to try to explain to everyone what all is wrong with her. Simply saying that she has a chromosome disorder doesn't tell much, but now that I'm able to put a name with her condition and explain that it's similar to CP I think it will be much easier for people to understand. Although very sad to hear that our baby has a definitive diagnosis of a neurological problem, we are just reassured that now we know exactly what we are dealing with and sort of have a better understanding of what to expect in the long run.
On a lighter note, Whitney also saw her Urologist last week. As you may remember, she was diagnosed with bilateral 4th degree kidney reflux about six months ago. Well, at her appointment last week they did a VCUG procedure again. That is the one where they insert a catheter and shoot dye into her bladder to see if it backs up into her kidneys. We were elated when they told us that they saw NO SIGNS of any reflux in either kidney! Her doctor said that doesn't mean that she is completely clear, but going from 4th degree reflux to nothing visible on the x-rays is huge! He was very pleased. We will go back in 6 months for another ultrasound just to keep an eye on her little kidneys. She also saw her Plastic Surgeon today and he was happy with the cleft repair she had in April. He wants to see her back in 9 months to check on speech-related issues. He also mentioned that he thinks her eye problems are most likely due to the tear ducts still being blocked. So, we will be seeing her Opthalmologist again in a few weeks to discuss a possible second eye surgery. Ugh.
To give you an idea of where Whit is developmentally, here are a few things she has conquered recently. She is 15 months old. She is able to sit up on her own and play with toys. However, she is not crawling yet or pulling up or standing alone. She is also not able to get herself into a sitting position from her tummy or back. We have to prop her up and walk away. Once she falls, she stays down until we help. She does not feed herself or even try to put things in her mouth without help. She will not hold her own cup/bottle. She is only eating two baby food meals a day and her main caloric and nutritional intake comes from her formula. She is not even close to being ready for solid foods or chewing. She holds food in her mouth, but does not chew. She swallows just fine. Whitney can say "ma ma" and she can tell you what a kitty, doggy and monkey say although sometimes these animal sounds get mixed up. She also gives high-fives and points to her nose, although it takes quite a while for her to process the request and make it happen. She has started a new game where she picks up toys and throws them while laughing. We pick her toys up and give them back just for her to throw them over and over again in excitement. For the average baby, this might become annoying, but with Whitney it's considered therapy and we are all just so amazed that she can do these simple "normal" things. She is also perfecting her "patty-cake." She used to try so hard to bring her hands together and then shake. Now she is able to get her hands together and her whole upper body swings side to side as she works to make a sound! It's so cute. It still cracks me up that when Jason asks her to say "da da" she says, "ma ma!" What a character.
Finally, Whit was in a parade this past weekend! We were asked to ride on the float for the H.E.R.O. program. That is the hippotherapy program that she will begin next month. It stands for Hendrick Equine Rehabilitation Opportunities. Some of the kids who rode with us were more severely disabled than Whit, but it was nice to meet other people who have children with disabilities and see how they do it!
I often have people ask me, "How do you do it?" I guess they are referring to the fact that not only do I have a disabled child, but I also have 3 other young children and a husband that is gone a lot. My answer is this....If you were in my position, you'd understand and you'd do it just as well as I do. You'd try your hardest to stay positive for you kids and husband and you'd bust your butt to make sure your baby got the best care available no matter the cost. That's what any parent tries to do and it's no different for us. To put it simply, I'm not a hero, Whitney is.
