Julien Update (10/20/18)

Hi friends!

Julien here. Can you believe I just turned 3 months old on October 14th?? It feels like time is flying by…..for me at least……maybe not for mommy and daddy since they have been so worried about me this whole time. I feel pretty good so far but I don’t have much to compare things to since I’m still fairly new in this world. I hear everyone talking about my muscle “tone” and saying that it looks better but still needs more work. Basically what this means is that my limbs and core are still “stiff” and I need to be able to activate my own muscles and start using them in order to do things like roll, crawl, walk, hold things in my hands, etc. I still have some time to improve my tone and it has gotten better since our trip to Mexico. Since my last post, we have started my physical therapy in our house which makes it easier for mommy and daddy as well. I really liked my other physical therapist but this works better logistically for us. In other news, I have been sleeping through the night (another win for mommy and daddy!!) and I’m practicing the moves needed to start rolling already. I enjoy being carried around , don’t get me wrong, but I’m ready to start movin’ and shaken’ if you know what I mean. This whole “carrying me around like a sack of potatoes” thing was fun for a bit but now I’ve got places to go and things to do!

I have my next 1-hour EEG this Wednesday and this will be done in the neurology office. If my results look good, they will start weaning me off the phenobarbital. If the results come back abnormal again, then they will switch me to a different seizure medication that doesn’t have as many long term effects (phenobarbital can cause mental/developmental delays if taken for too long). I know that they stem cells are working because I am opening and closing my hands really well and I’m even starting to wrap my hands around my bottle:) #julienmiraclebaby, #HIE,

Have a great weekend everyone!

Julien

 

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