Guest guest Posted May 27, 2011 Report Share Posted May 27, 2011 Thanks again everyone for the support, it is appreciated.An update to :We went back to the doctor yesterday morning. They took at look at the shoulder straps and said " well, those are redundant, aren't they? " The straps didn't work out quite the way they thought they would, and they agreed that they could come off. So, off they came! We're very happy about that. This cast seems a lot more solid than the last cast. It seems like it will hold even better, and is a bit more snug than the last one. Doctors were very impressed with how the cast turned out, and how Addie is doing. We did an x-ray, and she's at 18 degrees standing! That's very exciting to me! Right before she went into cast #1 in January, she was at 57*. Now she's at 18*. That seems really good, and really hopeful to me. As we are all hoping to do a brace after this (both us and her doctors), this is encouraging to me. No MRI report back yet - may not be back until next week. Hoping that doesn't show anything. Initial indications are that things were fine. The only thing confusing everyone is Addie's bones. Her skeleton just isn't exactly " right " . It's not just the scoliosis, but all of her bones. Maybe the MRI will have something to say about it? Not sure. Father to , 3 1/2 years old, 2nd cast in San Diego > > Thanks everyone for your well wishes and support. This doesn't get easier. > Today felt even more difficult than the first time. > > MRI was running late - so they didn't get her going until 1:45 (an hour and > 45 minutes late). That backed everything else up. Then, the doctors > surprised me with adding the " over the shoulder " piece. She didn't have > that on her first cast. It's a shock, and one I'm not sure I like. > > It took us a good 1 1/2 to get her cast all taped up nicely. The " over the > shoulder " piece on the right side was cutting into her skin, so they had to > come saw a little bit off. That was extremely scary for - she hates > the saw. > > With all the waiting we had to do for that, we didn't leave the hospital > until 9:45 tonight. We should have been out of there by 4 today. > > Thankfully, I have you guys as a support system. I really appreciate it. > My wife, as I've mentioned in the past, is suffering from a bit of PTSD from > her own scoliosis experience as a child. She does not agree with treatment, > so this is a huge fight in our house when this happens. I do this all > alone, with no one going to the hospital with me. Although my parents are > local, one set of parents is entertaining family right now, and the other > side is vacation (they would have been here if they hadn't planned this > months ago). > > Positives - there has to be positives today, right? > > - was at 57* when she went into cast #1 in January. They got her > down to 30* at that point. > - Addie was still 30* when she got the cast off two weeks ago. > - Today we had an MRI which, on first glance, doesn't appear to show > anything unusual. (I have mixed feelings on this - part of me wants > something there, to make the MRI " mean " something more than just " we ruled > out there is anything else " - because that just means the MRI wasn't > necessary) > - had an x-ray after. In the words of her doctor - she is > " remarkably straight " . > > Yes, remarkably straight. I have a copy of the x-ray. I'm amazed. They > have her spine completely straight. I was hoping to gain just a little bit, > but to be straight? Wow. > > Emotionally, I'm drained. I just can't keep doing these castings. Our > doctor is interested in doing a brace after this, as am I, and that's what I > hope can happen. I hope we can keep the cast on for three months, get it > off, and be able to be managed by a brace for the next few years. At least > until she's old enough to start giving us some real input on what she wants > for her condition. > > Doctors also said that her bones are " different " . There is definitely some > spinal dysplacia going on, which makes our case unique. > > Sorry for the dump. Thanks for listening. > > > Father to Addie, in cast #2 > > ------------------------------ > > *From: * Toney <gotmaps@...> > > *Sender: * infantile scoliosis treatment > > *Date: *Tue, 24 May 2011 07:32:03 -0700 > > **Infantile Scoliosis Email List<infantile scoliosis treatment > > > *Reply* infantile scoliosis treatment > > *Subject: * Cast #2 Today > > > > > > > > Cast #2 for today, here in San Diego. We are doing an MRI today, > > too. > > > > > > Frustrated that our MRI isn't schedule until 12:00PM, and the cast at > > 1:30PM - that's a long time without food (it will be nearly 6 PM before > > she's ready to eat, I'm sure). Scared for her, and hating scoliosis this > > morning. Trying to be brave for her, though. I'm sure I'll be a mess when > > I leave her with the doctors. I will be fighting to be by her side until > > the last second, as well as moving from MRI to casting. > > > > Just hopeful we can get her curve down to the lower 20s today. > > > > > > Father to , 3 1/2 years old, 29*, 2nd cast going on today > > > > > Quote Link to comment Share on other sites More sharing options...
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