We went to Jonathans PM&R doctor who confirmed his diagnosis of cerebral palsy she actual labeled it as a spastic quadriplegic. Meaning he is going to have a hard time with all developmental milestones. I always knew he had some form of cp but I guess when the doctor told me it really hit me hard, Justin and I were a complete mess! Who wants to hear that their child is going to have a hard time sitting, standing or walking things most parents don't even worry about. Don't get me wrong I love my little man with all my heart and am very happy to be his mommy. What scares me is the future, when he goes to school and he sees other children doing things he can't and wondering why! Sometimes I just sit and pray and ask why, why couldn't the boys just stay in a little longer, why does Jonathan have to go through this too then what keeps popping up when I am done is this.. why am I so worried am I not supposed to put all my trust and faith in him! Is GOD not the one that brought Jonathan from being profoundly deaf to slight/moderate hearing loss! Is he not the one that gave Jonathan life when on the second day of life the doctors came to my room and told me Jonathans is very sick and probably won't make it either!
So I come to this Jonathan is who he is GOD gave me him for a reason, he has a plan for him and I will love my baby the very best I can!
Now on to some other stuff!
Trying to get used to a feeding tube is not easy, Jonathan likes to grab it and pull not a very good thing so I had to come up with an idea. I put a small washcloth over it and ace bandaged it around his whole body its very interesting but it works he doesn't scream every time he hits it. The feeds were not going good but I think there getting better, we have him off all formula and he is on a blenderized diet. This consists of organic everything, coconut milk, rice milk, a fruit, a little oatmeal, some flax seed oil, probiotics, pear juice and yogurt he is tolerating it well. He has very little reflux now and he started gaining again. My mom got him to eat about an ounce from the spoon, I was ecstatic and he seemed to enjoy it too, however just as he was about to take another bite he threw it all up. We thought it was just a fluke but the next day he eagerly ate another ounce for me but then threw up so he wants to eat but for some reason he can't keep it down. So we are going to see a GI doctor just to rule anything that could be bothering him, oh ya he LOVES coke we give him maybe a straw full once in awhile(thanks Grandpa V)and he just smacks those lips for more, hes a goof but I love him!!!
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