Thursday, June 30, 2011

Future problems

Received an interesting email from the PRS support group...

"I have not posted in a while but my daughter has Stickler and Pierre Robin Sequence. She is 7 years old and has the small mouth and small airway. She has obstructive apnea and sleeps with a Bi-pap machine. She sees a multidisciplinary team annually that encloses dentists, orthodontists (sp), ENT, craniofacial doc. I have already been informed that she will have to have braces and not just that but she will probably have to have some teeth pulled to make room for all her teeth. Her ENT has said that he might need to do surgery to give her more room in her nasal passage.

I am just wondering what other kinds of surgeries might I expect with Pierre Robin as my daughter gets older. Is it always jaw distraction, second cleft palate surgery, tonsils and adenoids out to make more room in her airway?

She has had several surgeries at the beginning of her life birth until about 5 years old. We are currently on a reprieve (so to speak) NO surgeries since 2009. Is there a certain age that starts the jaw distractions, more cleft palate surgery and dental problems? I know every child is different but I do see some commonality in our children. I hope I am making sense?"

Depressing but excellent question. I scheduled Ellie's one year eye appointment follow up. She starts speech therapy in August. She is excelling in PT. I keep thinking, this is about to be all behind us. And then, with this email, I realize it's not. Or it might not be. The dental visits are still very much in the future. So far she doesn't have apnea or breathing problems, so God-willing she won't need a second palate closure, or adenoids and/or tonsils removed. We've been told she won't need jaw distraction but who can say for certain? *sigh*

Wednesday, June 29, 2011

Sleep Regression

Ellie began sleeping only 2-3 hours a night the last few nights. I heard from other mama's in my group that their 11 month olds are acting the same way. I think, however, in Ellie's case that it's her second tooth. It seems to be a much more difficult time with this second tooth than her first.

On a positive note, her PT came today and was positively THRILLED with Ellie's progress. She crawls beautifully, she reaches, she pulls up, etc. She now has to learn to climb the furniture. HAHAHAHA who in the world would ever think I need to teach my daughter to do something like climb furniture?

Saturday, June 18, 2011


I've been making excuses, being in denial. I said I would only say Ellie was crawling if she could get up on all fours and follow me into another room. Well, today she pretty much did. I'm happy and heartbroken. Time to pull out the baby yard, think about more baby-proofing, about how my baby is a big girl now...

Friday, June 10, 2011


Thought I had posted before now. Shame on me. Ellie's tooth is very prominently sticking out. We are enjoying it thoroughly. My husband calls her "snaggletooth." HA! PT is still having its benefits, I guess? She was doing so well and then suddenly she got worried about falling and won't pull to standing without me right next to her, or even sit alone. She did sit alone for PT the other day, and it was about all she did. She refused her afternoon nap so she was in a bad, bad mood for PT. She is rocking back and forth on all fours and most of tonight I was holding my breath as it looked as though she was about to crawl at any second. It made me so sad, I was certain if she did it I was going to cry. In any event, she ended up not having food poisoning as she was still sick the next day but no vomiting. I took her to our pedi's office, although our favorite pedi wasn't in, another doctor saw her. He said she had a stomach virus that had moved into her lungs (which, for the record, she later transmitted to me). She got some liquid albuteral to help her cough it up. She was perfectly fine in a matter of days. (Also for the record, it took me a bit longer)