Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and encouragement.
Clara is a young toddler. She is the kindest and sweetest little baby we have ever known. She doesn't talk much, but she does sign ASL a little. She says 'please' and 'thank you' in ASL. She blows kisses to people she loves, and she has a lot of love. She has been known to blow kisses at random people in the grocery store. Nothing like a kiss from a baby to brighten even the darkest of days. She cannot walk and right now it's not looking like she is likely to develop the necessary muscles to walk. But she is borrowing a Zip Zac (like a toddler size wheelchair) from Early Intervention, and she is loving the mobility.
Clara currently has excellent hearing and loves music. She can pluck strings beautifully on my harp if I sit her on my lap when I play. We will be keeping a close eye on her hearing because hearing loss is a known side effect of Adrabetadex.
Her favorite animal is the dog. She loves our dog, Arrow, and her stuffed wolf whose name is "Dog."
Her favorite food is probably peanut butter. She is a picky eater and it is challenging to get enough nutrition in her. She has trouble chewing food, especially crunchy or hard foods that require strength to chew. We are planning to get a G-Tube installed so we can make sure she gets the nutrition she needs despite having a limited diet.
Clara is a sweet dear and is so very loved. We are doing everything in our power to help her and praying for the right kind of gene therapy to be available while she still has time. Please pray for a gene therapy or for something to cure her.
There we go. That is her introductory story. Continue on to the Journal to see updates on her progress.
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This is from Thursday at school. Just after she got over the ...
