Abby Update

Saturday, June 9, 2012

Thursday was a long day. We had to be at the hospital by 8:00am, so I was up around 4:30am to nurse Abby (she was required to "fast" before the procedure). Like I mentioned before, Abby had to receive “medicine” to put her to sleep before her CT scan. The whole thing went pretty well. She did fight going to sleep and I had to leave the room because she only wanted to nurse. Poor Matthew had to wrestle her as she cried. Eventually, after about 20 minutes, she fell asleep. They wheeled her into the room for her scan. We were able to stay in the room with our lead aprons on while she had her scan. 

Afterwards she was in recovery for a few hours. She ended up sleeping most of the morning and early afternoon. They warned us that when she woke up that she might be groggy and a little drunk. Boy was she ever. It was so funny. She was laughing and waving at Matthew, it was the cutest thing.
 
Later that afternoon we saw her neurologist and plastic surgeon. The results of the scan showed that Abby’s coronal suture was still open, which is what we were hoping. It means that her forehead will continue to develop and grow normally. By the time she’s two, it should look more or less perfectly normal. So that was the good news.

However, the unexpected news was that her sagittal suture was closed. The doctors were very surprised by this. It’s not good news, but it’s not horrible news either. Since the sagittal suture was open when she was born, her head shape has grown normally this past year. As long as her head shape continues along the normal growth continuum there shouldn’t be any problems. However, if her head stops growing or her head shape changes then it is likely she will need surgery. That surgery would be the “big“ CVR surgery. We are praying that won’t be necessary.
 
As a result of this news, the other surgeries will likely be put on hold. This is kind of a bummer because we were hoping to have them behind us sooner rather than later. We’re not entirely sure about her eye surgery, but we will know more in August when we see her ophthalmologist. We’re hoping that despite the surgery delay, Abby can still get glasses if she needs them.

So basically, we are in limbo for the next year of our lives. There’s really nothing we can do, but pray and wait. We’re not entirely sure where to go from here. On the drive home I turned to Matthew and said, “So it looks like it’s pretty certain our next kid would have this too.” He said, “It looks that way.” I was hoping we get a reprieve with the next kid, but maybe not.  We shall see. 
 
We’ve been house hunting a little further away from Boston. Now I wonder if we shouldn’t stay where we are, close to Children’s Hospital. I love where we live, so I wouldn’t mind at all staying put.  

The great news is that Abby is more or less done with her helmet. Hooray!! She and I have been cuddling more to make up for lost time.  She will put her head on my chest and then look up at me like, “is this okay, mama?” We’ve never really been able to cuddle that way because of her big bulky helmet. I am loving having her helmet free. She’s so freaking cute.
 

So that’s the report. Part of me is tempted to ask, “why us?” Seriously, we are a medical anomaly. Our family is so weird. But why not us?

When I read articles like this http://www.telegraph.co.uk/health/healthnews/9315265/Unborn-babies-could-be-tested-for-3500-genetic-faults.html, I think, well, that’s "why us." People say such genetic testing would not be used to abort children. Yeah right. It’s a brave new world we live in and parents seem to want designer children. The "genetic fault" of craniosynostosis might be enough to scare some parents into aborting their unborn child. In my opinion, it’s not that serious of a birth defect, I tend to think we have it easy. But people hear the word “birth defect” and freak out. 

God knows we would welcome such children. We certainly wouldn’t abort them. So perhaps that is why He sends them to us. I am reminded of Mother Teresa’s quote, “Please don't kill the child. I want the child.” My sentiments exactly.

2 comments:

  1. She's so grown up, look at all those teeth! We'll be praying for you. And what a load of crap that the info won't be used to abort! Abby is sdo lucky to have the parents she does. Well, not lucky, blessed!

    ReplyDelete
  2. Thanks, Mandi!

    I know, it's total BS that whole "won't be used to abort" nonsense. Right now the only "genetic default" that's tested for is Down Syndrome and we all know how that turned out for those kids. Sad, sad.

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