Sol arrived safely to Madison hospital, we followed the ambulance the way there. I could have had a ride in the ambulance but I would have had to sit in the front and wouldn't really be able to see sol or anything so I decided to go with the family so it wouldn't be so lonely. I was really scared something would happen anyway and just didn't think I could handle it. But nothing happened, he did great.
We did arrive later in the day in Madison so many of the specialist didn't come to really look at him, just the few normal doctors, neonatologist, respiratory therapist, nurses, that was about it, and they started running a few tests but not many. Today was his big day of meeting specialist after specialist after specialist..... Poor baby... It is so hard to watch so many people pick and poke at him all day long. He is such a trooper for doing as well as he did. He hasn't had any morphine either since Neenah, some Tylenol to get through all the moving and people picking on him, but he has done well.
After everyone was done messing with him, he had ultrasounds done on his head, an echo done, ultrasound on the rest of his body, xrays, physical therapist looked at him, Ortho looked at him, neuromuscular Dr wasted our time looking at him just so she could tell us there is nothing she can do, and genetics! We saw social worker, lactation consultant, and a dietitian because I'm refusing fortifying his breastmilk... They started early with that this time so I wasn't very prepared. After allllll of that, we finally were able to hold him!!!! What a trooper! He was such a nice little bundle and fits so well in your arms. He is such a snuggle bug, I can't wait to snuggle him at home! Both me and daddy got to hold him and he did very well.. And may cried the whole time because it isn't fair that we get to hold him and she can't.... Uuhh kids... I wish I could put pictures up of us holding him but my phone wont let me, ill have to add them later.
So it has been an exhausting day for all of us! Going through all his issues... They said he has fused ribs, they said the same about lua but in the end she didn't, I'm not going to take them too seriously on that. But his brain ultrasound looked good, nothing abnormal. His heart looked good, fluid on his lungs, which we know about, he is still working on clearing that out. His broken arm is healing very nicely. And I had an interesting talk with genetics. He agrees with me that our kiddos dont fit limb girdle muscular dystrophy, they are of course much more severe. I was able to answer a lot of his questions to give him a good direction on where to go from here for diagnosing. He actually told me he was surprised, I gave him so much more information than he usually can get from parents. I guess I have been studying this for a long enough time now.
His thoughts, which I agree on, is that the condition would probably be more of the plectin myopathy. He said looking at sol, and be the same for lua, they had little muscle over all develop. They have muscle but little amount. A myopathy is when the fibers of the muscle didn't form together correctly like they should. So although they are severe, they, well Sol, shouldn't be losing muscle, he will just have to do therapy to develop the muscle he has to its max potential, whatever that may be. And we have learned that colds and sicknesses are very hard for these kids so we will always struggle with that. His heart and lungs will be watched carefully and his lungs will mostly be effected with all of this. But! We will be meeting with the best pulmonary doctor in the state for sure, maybe even the best in the country! And she will guide us and help us decide what will be best for Sol. I seriously can't wait to meet her, we had the worst pulmonary Dr. For lua so I'm hoping this is the game changer, the reason I wanted Madison was for this doctor, and we will be getting to meet her soon!
although this really isn't great news on the diagnosis, I'm glad his muscles wont be wasting away, and the geneticist said he expects Sol to gain more movement with the therapies, like Lua did. His feet are in good shape, not clubbed like they originally thought, but I missed the physical therapist so I didn't hear what they had to say about him. Anyway I am anxious to see what this little boy will be able to accomplish. He amazes me every day.
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