Yes, My Little Girl is Growing Up

Today was pretty epic.

Today Josie took her first steps. About 4. Then 5. Then 9. All at PT this morning. She had to be “tricked” and was kinda whiny about it — but at 20 almost 21 months, Josie it’s time to walk! And before your sister gets here too please.

Myla, her PT, is amazing. I mean, I know she’s gone to school for this stuff, but she just knows all sorts of cool tricks and ways to get Josie comfortable doing things she’s not so sure of trying. Today’s feat involved giving Josie two Dora bubble wands to hold (one in each hand) and while her hands were occupied, Myla let her lean unto her hand and tried to get Josie to step forward. Josie usually just locks her knees and either 1) falls forward or 2) tries to turn around at her waist to grab hold of whoever / whatever is behind her. But not today.

Today she had her Dora bubble wands and Myla was blowing bubbles and Josie was fully distracted so that when Myla removed her hand from Josie’s back, Josie stood and popped bubbles and didn’t realize anything had changed. Then Myla somehow gave her a little push to get her going and off she went with teeny forward steps.

Josie didn’t like it one bit! Haha…but I think after the second round of distraction / step taking she realized we were all super impressed. The last steps were hardly coerced. But it was nap time by the end of the session and Josie was not in the mood for much else let alone PT.

It’s amazing. She also was retching today following a enteral feed, and coughed up Pediasure. I think so anyway. That would mean her nissan fundo is loosening which would mean she is able to burp. Hopefully. I keep praying.

I don’t want her to be like 7 with the g-tube only bc she can’t burp. And the retching is so awful. If she could just manage gas we’d be doing so well.

And actually, if she is (maybe maybe) then that could be an explanation to why her eating is just phenomenal lately. She has been doing so well every day. The burrito from Moe’s with chicken, peaches, puffs and crackers of course, rice, beans, a fair amount of a cinnamon bun, mac and cheese, bagel and cream cheese, Gerber fruit bars, Gold Fish — lots of Cheerios.

She definitely isn’t anywhere where she needs to be with calorie intake for any of those foods — she might actually be ok for toddler sized servings of Cheerios — the one thing she eats well — probably 1/2 cup worth. But everything else is a few nibbles. Although, cream cheese she adores. She will eat the heck out of something with cream cheese, which reminds me — not that I ever get to the store lately with Brian always being gone and only having the one vehicle, anyway I digress… I need to get some graham crackers so we can have another go at those. Wow this is TOO fun.

Walking and eating. I promise it is so way cooler to whip up something for her to eat than just pop a tab of a can of Pediasure. I estimate she is taking about 200 calories by mouth a day and she’s still getting 3-4 8 oz feeds of Pediasure enterally, so I need to go get her weight checked so I can figure out how many calories she’s needing these days.

Yep, I am now a pediatric nutritionist, therapist, early interventionist, nurse, caretaker, teacher, baker, chef, researcher, frugal homemaker, toddler entertainer, driver, cleaning lady, and specialist trained in Endo, Genetics, Cardiology, cleft palate, GI, and I know my way around a hospital NICU, PICU, PACU, PCU etc. Oh yes, and I’m a mom (a 9 months pregnant mom).

And tonight I have a date with the dishes.

Newest Link

Non verbal Learning Disorder

http://www.talkingplayhouse.com/asp_aut.htm

Josie’s Eating A Joey!

As in a Joey Bag of Donuts! And if you don’t have Moe’s near you that translates to a chicken burrito! lol

Yes my little girl with previous severe oral aversion and sensory, texture issues is actually using her teeth to shred small chunks of chicken and swallowing them. She is mushing up beans and swallowing those for the first time too. And tortilla and rice she’s had, but man is she working it!

This morning she even had most of a slice of peach.

Thank you progress. I needed to have a pick-me-up.

And just as wonderful? Today is Friday so Brian only has to work late today, no class. So he should be home by 6:30 or 7pm. Thank you God. I don’t know how much longer I can stand Brian being in classes. I don’t know how he’s juggling at all between both jobs and 2 classes and a lab but I know where he’s not. Home. It’s cool bc I know he’s doing it for the family and to make things better and I know it’s hard on him too — he’s exhausted every night and comes home to a messy house, a frazzled 9-months pregnant wife and sometimes screaming baby. But if only he had to be the one trying to put Josie down for 2 hours to sleep and all she does is stay half asleep and point at the picture of Daddy on the wall and sign “daddy” repeatedly through the night.

Now Josie is throwing tortilla on the floor lol. Oh well, she ate a good little bit.

And tonight, I don’t even have to cook! But I have to say, I am getting into a groove. I still can’t drag myself out of bed in the morning for mass. But otherwise things are going pretty good. No park outings lately though either. Just too much effort. I know I will when Mary gets here. I can’t wait to get out of the house again. We need some serious distraction — Josie’s whining is driving me wacky. Why is it that all her activities and ability falls around 6-9 months but she whines like any 2 year could? Not fair.

Anyway…transition time to something else. Running out of sanity.

Wilmot Schedule

testing 1-2-3…

Wilmot Daily Schedule

http://spreadsheets.google.com/viewform?hl=en&pli=1&formkey=dGtBNUF5enZlS3FjN3RlZW0waTE5U3c6MQ

Really good things

Josie has been babbling babababababababababbaba — new. And Robyn taught her how to say “more” instead of just signing. So now she says, “mmmm bababababa” for bubbles. That’s pretty incredible.

She also as of just now, has figured out how to do handstands on all fours. She’s super cute and giggly when she does them.

I just love her so much!

–jen