Update: Yesterday was busy. We had two doctors appointments and a very cranky/gassy boy. His Valium got lowered again - still on a pretty high dose though. This brings our 8 times a day medication administration times down to 6! Its a little more manageable. I cant wait until he is off of everything!! James hasnt been very happy the last few days, last night was rough as he woke up at 2am with severe gas pain. The only thing that made him comfortable was to hold him standing up. Unfortunately, mama can only hold him for 15 minutes at a time. I need to build these scrawny arms up. Skyler got up a few times to relieve me but he had to go to work this morning so I tried to let him sleep. James gas pains are pretty bad and he cant get any relief. I have been venting his tube often. My mom has been moving his legs for HOURS. He got several warm baths. Skyler has been holding him up. They are all temporary relief. This morning we went on another target run. He didnt smile the entire trip but he didnt cry which was different than what he was doing. Since James was up all night, he (and I) took a great nap this afternoon. At about 6:00 tonight he finally calmed down. He went to his Cowabungalo and worked for a while. He actually held his head up on his own for a few seconds at a time. It was huge and exciting for me. We have been starting with his neck down and I ask him to lift it up for me. It takes about 20 seconds but he gets it up!! I cant wait until his neck strength is back, its difficult to position him with a limp neck. Skyler and I did several reps of him standing and weight baring tonight on his feet. He actually seemed to enjoy it for a little. I hope this weekend is full of progress and smiles. The weekends seem to be the most difficult for Skyler and I as we miss our family fun days. We are getting more comfortable with our new life but I feel so confident that it is just temporary. No doctor has told us this is our forever but even if they did, I dont see this journey ending with anything less than having my sweet baby James at 100%. We are doing whatever we can to make that our reality! Im still holding onto the miracle stories we have heard and have faith that that is Gods plan for James. #turtlepower 🐢👊-Jenna
Posted on: Sat, 02 Aug 2014 02:48:06 +0000
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