Thursday, August 28, 2008

Why the helmet??

Wide open mouth! This picture was taken during the first 2 weeks wearing the helmet. Cicily was not closing her mouth at all when the helmet was off during this time.
4 weeks of helmet and chin strap. Cicily now closes her mouth quite frequently, when her tongue is not in the way (which we're working on after talking to Dr. Glick on the consequences of tongue posture).
Side view after 4 weeks in the helmet. Her mouth is open, but look at the jaw angle. It no longer goes straight down.

She wears the helmet for 23 hours every day. We're on the 5th week now. It hasn't been the greatest 5 weeks. Cicily does quite well wearing the helmet once it's on actually. However, she cries and screams when it comes off and when it goes back on. We also had a dehydration episode that improved with a lot of water and Chris running to get some Gatorade at 3 am. We'll have another little celebration when we're done with the helmet in a few weeks!
It's another few weeks of keeping the end goal firmly locked in perspective. (The end goal being that Cicily will not only have a larger airway from growing her jaw approx. 1 inch while turning the screws, she will also be able to talk and eat better if her mouth can close and she can get decent tooth alignment.)

Thursday, August 21, 2008

G-tube site tip - Mepilex AG

I have to share what has finally worked to get Cicily's g-tube stoma (The opening in her skin where her g-tube goes into her stomach.) to heal. We've always used gauze on and off to help the site. On to soak up all the gooiness, and off again to let it "breathe". Since she had the g-tube placed when she was 2 weeks old (Oct. 06), the stoma has had issues with granulation tissue, more granulation tissue, and her stomach lining coming out of the hole. Nothing we or the surgeon tried was working long term.

So on July 1 when the distractors were placed for her JD, Cicily's general surgeon, who initially placed the g-tube, Dr. Graziano, did a resectioning of granulation tissue on her stoma. After surgery it looked so much better! No more stomach lining popping out. It hurt Cis like crazy though for the first 2-3 weeks post op.

I also asked Dr. Graziano (another Dr. we would heartily recommend to anyone) to prescribe a new gauze to put around the g-tube site. It's called Mepilex AG, it's a foamy guaze treated with silver. I've put that on the site every day and kept it on all night and the site looks better than it ever has. There is not a trace of ooziness or blood anymore! It's so great to not have Cicily be able to pull on her g-tube and make it bleed and no more bloody pajamas (at least by the g-tube). So, spread the word to fellow g-tubers - Mepilex AG. It comes from a medical supply company and it really worked for us.
(Do you think this could score an advertising profit from the company? ;))

Wednesday, August 13, 2008

Distractor guide book

I just found the "technique guide " for the distraction device being used for Cicily. Here is a link if anyone else really wants to know more about this distraction process from a technical aspect. It does have great pictures so you can really get a feel for what the device looks like internally. Dr. Singh showed us these pictures before the first distraction surgery, but it's nice to leisurely read through the "guide".

Have I mentioned what an amazing surgeon Dr. Singh is?!! I'm so glad she practices in the valley. And I'm glad I was only responsible for turning the extensions! (Especially because I didn't even do that very well.)

Anyway, maybe this guide book can help another family looking into jaw distraction and wanting to know more details.

Tuesday, August 5, 2008

JD update

No more screws!!! They stopped turning yesterday afternoon and I felt like I'd won the lottery! 30 days, 30mms - done. Dr. Singh took them off this morning. So, Cis still has the rods internally, but no more dangling jewelry hanging from her chin!
We do have new orders for the helmet though. It'll have to be worn for probably the whole consolidation phase (about 6 weeks). But, that should allow her teeth to meet and her jaw to angle straight out as opposed to sloping down like it is now. We have high hopes she won't have a Jay Leno chin after all! We'll see. :)
Cicily no longer needs 24 hour monitoring and she's already taking advantage of her renewed freedom and getting into bathroom cupboards. Once again, we rejoice at the messes of our toddler!

Saturday, August 2, 2008

Photo Album - 21 months

A few hours after jaw distraction surgery. Cicily with ET tube, on sedatives, and paralytics. One of her wonderful nurses at St. Joseph's Hospital. Grandma DeEtte visiting and holding Cis' hand.
Cicily and Maya
The great smile. Playing away!
Playing with the gifts from Grandma Sue and Grandpa Norm from their recent vacation. Thanks!
The computer is in Cicily's room right now so we can watch her sleep and get something done too. She thinks it's quite cool to sit in the chair and move the mouse or pound on the keyboard!
Since the first time I took a picture of Maya and Cicily laying on Maya's pillow, Maya has asked for a picture of it each time.

Friday, August 1, 2008

A work in progress -Amazing!

I wanted to put up some progress shots because I was shocked when I looked at Cicily's before pictures this morning!!! I can't believe what an amazing difference this jaw distraction has made so far. I'm trying to remind myself that all babies grow and change in appearance because I kind of miss Cicily's "before" face. After the surgery to remove all the hardware in Sept, we'll post some real before and afters. We're still working on raising Cis' jaw up a little more so we'll see how that turns out.
*Dr. Singh's plan has always been to "overcorrect" Cis' jaw so she'll have an underbite (her lower jaw will stick out more than her upper). This will allow Cicily more of a chance for losing the trach, and allow her to grow into her jaw over the years and hopefully need less future distractions.