First Steps!

During physical therapy today, Ellie took TWO UNASSISTED steps! I couldn't believe it, even though I witnessed it with my own two eyes. I was nothing short of shocked. She had been practice walking by holding on to my hands, and we had been using two chairs as parallel bars for her to walk with support but to take unassisted steps?!?! SHOCKING! Of course, she was LIVID that I made her do it and for a solid hour (at least) following she wouldn't even stand but then she she stood up and pivoted from the couch to coffee table unassisted. So she's definitely learning and one day it's going to be over, I'm going to have a full-fledged walker. Her first birthday party is Saturday so it's really breaking my heart a bit. She's so grown up! :*(

GI Follow up

She weighed in at 13 pounds, 15 ounces. I was NOT happy. She gained 10 ounces in two months. The GI was not upset about her growth, but we had both hoped for more weight. I explained that now she's crawling, and learning to walk in PT, and we try our damnedest to get her to eat all we can but she's schizophrenic about her eating. She's not on a schedule, she won't eat certain things at certain times (sometimes the only thing we can get in her are cheerios, other days it's all about the bottle). She's turning 1 year in just 3 weeks so she's at the age where their weight levels off and their appetite diminishes. He agreed that all those things make for normal baby appetite. However, Ellie cannot afford to be a normal baby. So, our prime directive is to stop the bottle, add in more table food (still with whipping cream and butter), add in pediasure to her sippy cups, and an RX to increase appetite. It's called Periactin. It's an old benedryl concoction, used to treat hay fever and allergies but it also works to stimulate appetite. We do have to watch for the side effect of extreme drowsiness. At her one year appointment we are looking for her to be at about 15 pounds. I don't know what else to do, but she simply CANNOT have a feeding tube. She'll just rip it out all the time. She's smart, she's strong and she's FAST.

Pool Party

Ellie had her first trip to the pool. I had asked her PT how she felt Ellie would do and her reply was "Who knows? Ellie is an enigma. Things we think she would like she hates, things we think she would hate she loves." Which is true. She doesn't mind toys being zoomed up to her face but if you put her in the swings she thinks she's going to absolutely positively die. In any event, she seemed to be ok with the pool situation. At first she seemed pretty scared of the whole ordeal, but then got used to floating around while eating a rubber duck and suddenly things became a lot more chill for her. She clung to mommy and daddy every now and again but other than that, she wasn't happy, she wasn't mad or sad. LOL

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*

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?

Crawling

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...

Updates

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)