I have 3 different thing son my mind this morning...One, I am wondering if Jacob has alot of the symptoms of another genetic disorder called SMS. It is a deletion of chrom. 17, but a larger chunk. You can look up more on prisms.org. One of the characteristics is lack of need for sleep. Jacob has been waking up at 5:30am every morning, waking throughout the night (and playing) and not taking naps (as I mentioned earlier). That is enough to exhaust and parent! Add that to the fact that he requires more care than an average child and you have very tired mommy..Anyhow, I will keep you informed if this is a lasting characteristic and hoping it is just a phase!
Secondly, we are heading to the doctor this afternoon to check his ears (he had an infection a few weeks ago) and get his shots since he was too sick to get them last time. Last appointment I asked the doctor if he was eligible for the RSV shot this year since last year he was in the hospital for 10 days with a very severe case of it and he has chronic respiratory problems. It frustrates me to find out that you have to be one of 3 things to get the shot..1. Be born before 24 weeks 2. Have a heart murmur 3. Have chronic lung disease and be on O2. Each shot costs $1000.00 out of pocket. If Jacob lands in the hospital again, which is likely, then insurance will be paying alot more than $1000.00! Just makes me mad and I had to vent!
Ok, third thing, I want to eventually start some fundraising for some of the things that we have had a rough time with in this journey in hopes to help other families as well as research for rare genetic disorders. I have a few ideas, but I would love to hear some others. So if you have one, please let me know!
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