I have very sad news to relate regarding Oliver. Over the last three weeks we have been going through a diagnostic process to determine what was causing physical developmental delays, primarily very low muscle tone and physical strength. Yesterday, the results of a blood test confirmed the symptomatic diagnosis of Spinal Muscular Atrophy (SMA) Type 1. This disease is invariably fatal and most infants have life spans of 18 months or less with 1 year being very common. He will continue to get progressively weaker with respirartory failure likely to be final cause. Mentally, he is unaffected and is a bright and happy little guy. It's hard to stay sad when he's around! To add to the trauma, the disease is autosomal recessive, meaning that both Rebekka and myself must be carriers and that there is a 25% chance any child we have could develop SMA. Clearly this has been a very tough time and will continue to be so. Bekka and I are doing about as well as can be expected given the circumstances and are moving ahead with planning for the upcoming year. She will be dropping down to a very part time schedule so that Oliver can be at home and minimize his risk of a respiratory infection. Stride Rite is allowing her to keep her full insurance coverage as she does this which is a huge benefit as it's both better and cheaper than mine. A few people have known about this from the beginning, but with a confirmation yesterday, we feel it is appropriate to let others know. We thank you for the thoughts and prayers as we move forward. Ollie is a well loved little fella.
Oliver is, indeed, well loved.
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