Sam is having a good morning and had a great speech therapy session with his bananas..we are making progress!!!! Finally seeing some real light in this area. He was placed in a tumbleform feeding chair which hugs his body and makes him more organized.. it made a big impact on everything. He could not do the arching and moving away from the food as done before and much less choking faces.. he seemed down right pleased with himself! He does need alot of practice at this but at least we could get those naners in the mouth and he would play with it and move it around. Some of it was swallowed and a good bit came sliding out but he is working on it and that is HUGE for us! God bless him - he was blowing bubbles at me with the bananas and I loved it. God always shows us some light in dark periods...I do have faith in that. Funny thing is the speech therapist graduated from my highschool and her mom still lives in the niceville area.. wow - crazy!
So we found a little joy in what has been a nervous week of wondering what is next and what to do about the surgery stuff. I talked with a friend this morning and hearing the squeals of her baby and all the normal morning chaos made me ache for my girls but we will get back home soon and hopefully by then some answers are on the way. Jason had to get Bella in "fifties" attire for special dress up day at school today and when I told him to pu her hair in a pony tail with a scarf I thought he was going to pinch me through the phone. He is doing good just getting them dressed and fed and out the door.. hair and costumes are not reasonable part of his duties. The girls are probably telling him how to do everything and he is about sick of it. But he is doing amazing and I am so proud of him.
They are going to do a CPK blood test I think which may be one he has had before but I am so lost amidst all the many test he has endured that I just nod and say..ok and what is that one..? The spinal is the one that always makes me nervous but he has not had one yet, only been discussed at times. I think one hard thing is that Sam's blood work has never had obvious markers for certain issues..like off the charts in the acid levels etc..he has had slightly higher figures on certain things when I read the labs but nothing anyone has ever brought up to me as indicative of a particular diagnosis. They spoke about checking on his lower GI as all his studies have been to the upper GI. I think they are curious about the kidney function and liver but I don't think any tests have proven problematic. His perinatal exam with the the high risk ob during pregnancy did show abnormal dilation of the kidneys but what did that mean really? They obviously did not think much of it as it was on the report but never mentioned to us. so.. we are just waiting and seeing for now what they will do. In the meantime I will keep at the work on his feeding and pt and ot. He wants to get stronger. I know he is a fighter and in some ways is just a bit trapped in a body that does not always want to cooperate.
I am praying for some families of my church and being so far away I don't really have the updates on things. Mostly in here I pray for our doctors and those of the other patients.. so many sweet heart babies. They do alot of transplants here and it is amazing the level of medicine that is all around us. The parents with tears in their eyes break my heart. I went to a baby massage class yesterday and I may have already mentioned it in my blog but these parents had newborns undergoing heart surgeries and they were so scared. To recognize your own fears in thier eyes makes you feel so connected to them. I feel a bit like an old shoe in these wards by now and Sam is only 7 months next week but that first week in the NICU feels like a million years ago and these parents are right there in it. Then to walk near the entrance of the hospital where the parents of new "healthy" babys are heading home is a different experience..entirely different memories of taking home our girls.. a different set of nerves and fears, but no less heightened. God probably makes this journey of parenthood wrought with emotion and nerves because it trains us on where and how to handle fear. I just truly believe fear is not a place to live but at certain stages is unavoidable and we later look back and say.. how funny that I let that fear control me so much. How funny that I agonized over leaving my first in her room alone that first night in the crib crying or at drop off on the first day of going to the nursery. I am trying very hard to put the fears aside and face things with a sense of faith. God has always gotten us through before. Sam is having to do that on his own level too..and today with a little help and the security of a new feeding chair..he put aside some of his fear and tried to grow a bit. We just have to keep moving forward.