Since Kendra has come home, not a week has gone by that we haven't had SOME sort of appointment - home health nurses, ostomy care, therapy, specialists, etc. She had two pretty important ones this week so far. On Monday, she had a repeat of her ABR hearing test, this time at the hospital under IV sedation. It was a stressful day, but the test was a success. Her left ear is fine, which is a relief. She has moderate to severe hearing loss on the right due to the absence of an ear canal, so she will be fitted with a hearing aid soon.
Yesterday was Kendra's first visit to Shriner's for her thumb. It's a little early to tell for sure, but the surgeon felt she might not be the best candidate for successful pollicization - the repositioning of the index finger to turn it into a thumb of sorts. She may not have the muscles and tendons necessary for abduction. We wouldn't do anything for a few years anyway, but it was disappointing to hear she may not have the results we were hoping for.
Still to come: her first visit to the cardiologist to evaluate her heart defect, and initial visits for her vertebral issues, which may or may not also be handled by Shriner's. Some good news: she's now over 8 pounds!! Hard to believe - she's come a long way! She's still smaller than Evan or Ian at BIRTH, but we're making progress. :) Thanks for checking in, and I apologize for the infrequency of the posts as of late. Blessings!
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Hi, thought I'd jump over and say hello and thanks for visiting my blog. Well its my family/educational blog. My daughter's blog is on Caringbridge ( www.caringbridge.org/visit/margaretreed1)there I blog her medical journey.
ReplyDeleteAnyways as for the thumb. I wouldn't sweat it. I see that she doesn't have the thumb on her right hand. Neither does my daughter. Maggie is a lefty so no worries there. Even so you would be amazed what they CAN do without a thumb. We had the option of doing the pollicization but we have chose not to do it at this time. Reason being is that Maggie does perfectly fine without a thumb. She manipulates things so well without one that most adults don't even realize that she doesn't have one. It took our neighbor a few years to realize she didn't have a thumb on her right hand! LOL.
Things will always seem like a whirlwind for quite some time. That is until you learn to live your new normal. Things eventually do slow down though. The problems never truely go away but they do get less critical the older they get.
Also there is a great support group ,, VACTERL Network on Yahoo . Join this group. Its such a wonderful group of families. This year they are having a conference in DC. Its one of the best experiences you will ever have if you can come. Its the only place in the world that you will ever meet up with families with children like our own. The info is on www.vacterlnetwork.org
Always feel free to email me any time (reedfamilypa@yahoo.com ) if you ever want to chat, talk , vent, whatever.
Its great to meet you :>)