Claire has had a number of tests and evaluations in the last few weeks. So far we have received all good news. It is hard to believe sometimes how far Claire has come in the last year. People often tell me how amazed they are with how much she has grown and changed. We are very, very thankful for the warm, loving and all around amazing little girl we were blessed with.
Claire had her nerve conduction test today and did absolutely amazing. The doctor told us Claire handled the test better than any three year old (well in less than two weeks) she has ever seen. Claire did not cry at all during the shocks and only on the fifth, sixth and seventh needle sticks and stopped very soon afterwards. It was an amazing sight to see. She was even singing the Itsy Bitsy Spider at one point during the test. She is no worse for the test, having no regression or no residual issues at all. The test was completely normal, and this doctor sees no reason to continue with any type of testing. In her opinion, Claire may always be slower than others, but she is cognitively intact (she can receive language and process it) and continues to progress developmentally and is starting to catch up. This is wonderful news for us as we agree and feel no need to further search for a diagnosis/reason that may not exist. Just chance or luck. :)
Claire also had a swallow study last week. For the first time in over 2.5 years, Claire's swallow study was normal. Nothing went to her lungs or even attempted to go to her lungs. We have not yet seen the ENT; however, the goal is to progress to nectar thick feeds and from there to regular liquids. This may be a long process, but hopefully she will be able to train her muscles to swallow the thinner liquids and avoid sickness so we can continue to move forward with drinking regular liquids. She is certainly ready to "drink like Maggie".
Her feeding and speech skills are still behind. She continues to work on feeding in both speech and occupational therapy. She has had a bit of down time over the summer where she didn't go as often, and they didn't necessarily push her as hard but with the school year starting they plan to "get it going again". Her speech level is reportedly about on a 2 year olds level so about one year behind. She has about 40 sounds she cannot articulate (20-25 would be a qualifying number for reference). So we will continue with twice weekly speech and feeding therapy.
On a positive note as well, Claire has progressed far enough in physical therapy to no longer qualify for further treatment at this time. The hope is that Claire will continue to improve and not need further therapy. However, as kids often regress, she is going to be reevaluated in 3-6 months to see where she is and if the situation has changed. We will continue to monitor her closely ourselves.
As Arkansas has a cutoff date of August 1st for school, Claire is in a 2 year old class this year. This is actually good for her based on her physical abilities/motor skills. Her teachers are wonderful and we are very, very happy with her "new" school. Both she and Ryan attend the preschool at our current church.
As we approach Claire's third birthday, it is hard to believe all the child has undergone and overcome in her short life. She is a joy to be around and continues to delight us with her abilities. I am thankful each day we were blessed with our precious little "Claire Bear"
Thanks to everyone for the thoughts and support!!! I will plan to update again after we see her ENT physician in a few weeks time.
This is truly a thrilling, miraculous report. We all knew Claire Bear is as sweet as they come, but it is also nice to hear how tough she is and how well she is doing developmentally! Way to go, Claire!
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