We saw Elizabeths ENT and GI specialist this week. Had to reschedule the appointment with the Pulmonologist due to everyone being sick at our house. The ENT is waiting on the records from Scottish Rite Childrens Hospital so he can look at the sleep study. Depending on his interpretation of that he will probably do surgery to remove adenoids and/or surgery for her lyrangomalasia to help with the obstructive sleep apnea. We spent two hours at the GIs office yesterday and talked to him about everything. Elizabeth has started her choking episodes again, and they are different from the retching/dry heaving episodes. So she has both. And of course no one knows why or what to do. He is going to call the Motility Specialist in Atlanta personally and find out about getting us into the program there. Hes not sure if they do the testing on someone so young since shes a baby. GI believes that we are right and that this al points to a bigger picture, but he is not sure that we will get answers while she is so young. I on the other hand am determined to continue searching and pushing. I dont want to wait until she is 3 or 4 to find out she has something serious wrong if we can figure it out now and get her help. The choking happens at least 4-5 times a day while the retching/dry heaving comes and goes. GI says its ok for her to have a little bottle here and there by mouth depending on how her day goes, but doesnt want her doing any baby food or anything else at all until we can figure this out. If the program in Atlanta will take us he will work on getting us in ASAP and hopefully we will know more soon as he asked for a week to talk it over with the program. Elizabeth is 6 months old today and such a happy baby. She smiles and laughs, but she is still very developmentally behind and we are working with her at home as well as at therapy. Please pray that she is more receptive to therapy. She hates them touching her at all and she screams the entire session. Its hard on everyone involved, but we are desperate to get her help and hopefully help her feet before she has to get braces or special shoes. Thank you all for asking often how we are doing and for the prayers. We appreciate it!
Posted on: Thu, 15 May 2014 17:19:11 +0000
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