This blog goes out to Doug, who asked me the other day where my update was and continued to prod me for more information. Thanks for being informed Doug!
We have moved from finding out what’s going on with this WHS stuff to dealing with it and keeping an eye for certain situations. We were keeping up with a very active WHS support group but found that to be a bit depressing. At this stage of her life, given the situation at hand, we feel somewhat fortunate. The majority of the children affected by WHS have very severe issues that are nothing short of heart surgery and a myriad of other problems like prolonged seizures and all kinds of ER visits. For the most part, Kendall is a healthy girl with many needs. We are so thankful for this.
A few days after our visit to Children’s Memorial Hospital, we saw a Geneticist. Our expectations for this visit were to really get a handle on what we should expect for Kendall. The answers we got were empty. The only thing that we realized was that she is a unique person and her condition will be completely different than any other WHS case. To Gene Specialists, we are research and cases. Very few of these people have come across WHS children and their research is about as good as ours. We get paperwork on other cases that show what symptoms and problems they had and unfortunately our case will be completely different. We are now officially a case to keep an eye on and maybe we will be hope for the next family like ours that comes across this syndrome. With all of the research and case comparisons we have conducted, it looks like the constant with all of these children is mental retardation. The geneticist feels that we have a lot to be hopeful for, but her best case guess is if Kendall can function at an IQ above 80 then we are ahead of the pack. History tells us that Kendall will have special needs with her intellect and most likely physically. Each day is a new day for us and all we can do is wait.
In the meantime, we have engaged therapy for her on a weekly basis. Currently, speech and developmental therapy have been in full swing, with physical therapy not far behind. We have been accepted into an early intervention program that gives us resources for her development. It’s been great, but it also gives us a view of where our tax money goes. We have been looking for additional assistance to help offset the medical expenses and found that if you make money over a certain threshold, you don’t qualify and end up having to pay for everything. In situations like this, it would be helpful to be a free loader without a job so that you get the full opportunity to get the benefits. It’s funny how the system works. We have given so much into the tax system, but don’t get to use the money. Instead the money we give goes to those that take advantage of the system. Obviously, I have become very opinionated about this situation…
Well, back to Kendall… Our main focus with her right now is weight gain. With her feeding tube in, we have been trying to find the maximum feeding capacity for her. It’s taken a while, but we have found a good pattern that allows for her to gain weight and start catching up. As long as she stays healthy and isn’t sick, she usually does pretty well. As of today, she is about 12 1/2 pounds. This is great since she was only about 10 pounds at 8 months. She’s gained over 2 pounds in the past 5 weeks. This is her largest growth spurt yet. Our goal is to get her to at least 16 pounds by her 1st birthday. If we can do this, it will be a large accomplishment for her. If she can keep up this pace, she should get there. Either way, she is far below the 50 percentile curve. She should be about 18 pounds at this age. We’ll get there!
She gives us so much joy. She is learning more every day and is so pleasant to be with.
We picked up this bike trailer a few weeks ago and took her and Carsen on her first bike ride. She had so much fun that she fell asleep!
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