I havent posted yet about Charleys 22Q clinic visit yet. We found out a lot and figured out there was a lot we still dont know. She will have to have several appointments in St. Louis in the next couple months. She has to go back for an eye test, her last one was while we were in the hospital. She has to go back to the surgery clinic to get her G tube changed out and so I can learn how to change it as well. She has to go back and have her head remeasured for a possible helmet to round her little head back out since her development has been delayed a bit. After we see her regular pediatrician next week and if he oks her to try solid foods we have to go for a feeding evaluation for her bottle and solids which will take several hours. Her new speech therapist just advised me to change her bottles once again so we will be buying yet another brand of bottles as if we havent bought enough. ENT discovered that she has a submucosal cleft in her palate and still the laryngo malatia all which we have to watch closely in hopes surgical intervention wont be needed if she can overcome the defects on her own. Along with her regular scheduled appointments with cardiology, genetics, and immunology she will also need more hearing tests. All of these things are so overwhelming already all prayers are very welcome that she doesnt get sick and have to go for anymore appointments! Making all these trips will be very trying mentally and financially on the family as well so prayers for wealth and strength are also welcome. We appreciate all of you!
Posted on: Thu, 07 Aug 2014 19:37:08 +0000
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