Way back when, they were supposed to do a chest x-ray on Matt and you to see if you had the same rib anomoly Abby has. Did they do this?
Quick answer: no. They never followed up and I never pushed it because I think we'd know if either one of us had pieces of rib connected with fibrous tissue.
With all of the genetic testing you've done, has anything given you answers as to why this happened?
Nope. We just got the results of the last set (I think that was the 5th set of tests) and everything was normal. I guess that is good, but I'd really like to know what caused this. It's kind of disconcerting not knowing how this happened. Not that I'd feel better knowing that it was the kind of make-up I used or the amount of ranch dressing Matt ate, but still! We will be joining a study at Boston Children's to help them research this syndrome. While it won't necessarily help Abby, it will certainly shed some light on this craziness and possibly help future families.
Have you contacted any other families with CCMS?
I have talked with the mom of a 12 year old girl in NJ who has actually had the rib surgery and has found it very helpful. I have also emailed a mom of a 6 month old girl in Chicago who is just a little further on this journey than we are. Then, of course, I have talked with Reagan (Piper's mom) and have beeing trying to keep up with her blog when I have a chance. It's interesting that of the 7 children alive with this syndrome, the 4 I know about are girls. Significant? Maybe!
Does Abby move her arms and legs?
She sure does! When she gets mad, she starts flailing all around!! Right now, at least, she has full range of motion. The only slight problem we see is that she does tuck her thumbs in and tends to keep her hands in a fist. She opens them on her own though, and can keep her thumb out when she wants to. We work hard with that. Just since we've been home, Abby has discovered her fingers and LOVES to suck on her left pointer finger. It must taste good! She gets really mad when she takes her own hand away and then doesn't put it back in!
How is Abby's schedule?
We are still working on that with the nurses, as some want to just let her sleep. While I definitely acknowledge that she needs to sleep, she also needs to get her days and nights under control. We also need to continue to work on her OT, PT, and speech therapy while we're waiting to start with Infants and Toddlers in the county. Since we've been home from our most recent hospital stay, Abby has been awake much more during the day and sleeping pretty well during the night. She gets continuous feeds at night so that the nurses don't have to wake her up to hook her feed up.
How is your adjustment with the nurses going?
We're getting there. We have been fortunate to find a wonderful group of nurses who really care for Abby. Just as we had hoped, they treat her as our daughter, not a patient. We hope to keep them for a long, long time!! It's really hard to find nurses willing to travel where we are, so we don't want to give these ladies any reason to leave. :)
Most of the adjustment is just realizing that our privacy is more or less gone. There will be someone else holding your baby, there will be someone listening to you argue with your husband, there will be someone watching how you deal with your four year old's tantrum...it's just an adjustment. While we really like our nurses and are thankful for them (and we couldn't do it without them!!) it's also nice to have a little family time in the evening. It's a little strange having someone watch you as you pray and sing with your son before bed (Caleb wanted to include Abby, so we did it downstairs), so I like that now we have that time to ourselves.
Quick answer: no. They never followed up and I never pushed it because I think we'd know if either one of us had pieces of rib connected with fibrous tissue.
With all of the genetic testing you've done, has anything given you answers as to why this happened?
Nope. We just got the results of the last set (I think that was the 5th set of tests) and everything was normal. I guess that is good, but I'd really like to know what caused this. It's kind of disconcerting not knowing how this happened. Not that I'd feel better knowing that it was the kind of make-up I used or the amount of ranch dressing Matt ate, but still! We will be joining a study at Boston Children's to help them research this syndrome. While it won't necessarily help Abby, it will certainly shed some light on this craziness and possibly help future families.
Have you contacted any other families with CCMS?
I have talked with the mom of a 12 year old girl in NJ who has actually had the rib surgery and has found it very helpful. I have also emailed a mom of a 6 month old girl in Chicago who is just a little further on this journey than we are. Then, of course, I have talked with Reagan (Piper's mom) and have beeing trying to keep up with her blog when I have a chance. It's interesting that of the 7 children alive with this syndrome, the 4 I know about are girls. Significant? Maybe!
Does Abby move her arms and legs?
She sure does! When she gets mad, she starts flailing all around!! Right now, at least, she has full range of motion. The only slight problem we see is that she does tuck her thumbs in and tends to keep her hands in a fist. She opens them on her own though, and can keep her thumb out when she wants to. We work hard with that. Just since we've been home, Abby has discovered her fingers and LOVES to suck on her left pointer finger. It must taste good! She gets really mad when she takes her own hand away and then doesn't put it back in!
How is Abby's schedule?
We are still working on that with the nurses, as some want to just let her sleep. While I definitely acknowledge that she needs to sleep, she also needs to get her days and nights under control. We also need to continue to work on her OT, PT, and speech therapy while we're waiting to start with Infants and Toddlers in the county. Since we've been home from our most recent hospital stay, Abby has been awake much more during the day and sleeping pretty well during the night. She gets continuous feeds at night so that the nurses don't have to wake her up to hook her feed up.
How is your adjustment with the nurses going?
We're getting there. We have been fortunate to find a wonderful group of nurses who really care for Abby. Just as we had hoped, they treat her as our daughter, not a patient. We hope to keep them for a long, long time!! It's really hard to find nurses willing to travel where we are, so we don't want to give these ladies any reason to leave. :)
Most of the adjustment is just realizing that our privacy is more or less gone. There will be someone else holding your baby, there will be someone listening to you argue with your husband, there will be someone watching how you deal with your four year old's tantrum...it's just an adjustment. While we really like our nurses and are thankful for them (and we couldn't do it without them!!) it's also nice to have a little family time in the evening. It's a little strange having someone watch you as you pray and sing with your son before bed (Caleb wanted to include Abby, so we did it downstairs), so I like that now we have that time to ourselves.
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