Ali has been doing great. She started eating again on October 6th and very quickly started trying new flavors and textures.  She is now very happily eating 15 or 16 ounces per day and enjoying lots of different purees. She’s happy to eat pudding, veggies, fruit, baby cereal or yogurt. We have decided that she is probably sensitive to cows milk protein so we have eliminated cows milk from her diet and we’re giving her pudding made with soy milk and yogurt made with coconut milk. She eats quickly and seems pretty happy about it! It seems as if each day she eats a bit more than the previous day and is now getting at least a third of her calories orally as opposed to through her G-tube. We have started to add some “crumbs” to her purees to slowly start working towards chewing and she seems to be doing okay with that. My guess is that she doesn’t really enjoy eating the crumbs.  She has also started eating some fork mashed fruits. I love progress! For some reason, the more Ali eats, the more congested she seems. We have had x-rays done to check for aspiration and her chest is clear so we have no idea why eating causes congestion.  Unlike in the past, this time she has not stopped eating so that shows that her oral feeding is becoming more established and natural for her. It is now an expectation that at meal time she will eat.

Ali is also doing well in gymnastics! She is now at the point where she can hang all by herself on the rings for a few seconds and on Monday we actually let her swing a bit on them. She can crawl through a tunnel and is getting quite good at walking with assistance across the balance beam. She also enjoys doing front rolls with our help and jumping onto the crash pads from the vault. She has just started to stand herself up without needing to pull up which is a skill that we have been working on for MONTHS! Life is easier when you can get up and go without bum scooting over to the coffee table to pull yourself up I guess!

She is doing great in both of her school programs. She`s enjoying them and while I am sure that the language enrichment program is very challenging for her, she seems to be getting a lot out of it. She brings her homework home every Wednesday so we work hard at it and I think she enjoys doing her work. She seems a little apprehensive when I drop her off at the language program but according to the teachers, she`s fine once I leave.

Anyways, thanks for reading!

After much discussion, Jason and I came to the conclusion that unless we made some fairly significant changes to our “plan” for Ali’s education, she was not going to get the support that she needed right now. Our initial plan was to begin the process of transitioning her to academic programming through the public school board in January after her fourth birthday. We ended up deciding to begin transitioning her now rather than waiting because there was a spot available in a language enrichment program offered by the catholic school board. By switching her into the catholic school program we gained access to a local speech therapist, something that wasn’t available through the public school board. So now, Ali is registered at the Catholic School down the road from Madi’s school and this year she will be attending two mornings a week. We were able to rearrange Ali’s schedule at the other preschool so that it didn’t conflict with the language enrichment program and Ali will be participating in both programs.

This was a very hard decision for me (not so much for Jason).  I really worried that I was sending Ali into an environment that she wasn’t ready for but after lots of discussion, I can see that she’s ready. This will be so good for her! Next year, Ali may be able to go to the language program 4 days a week (depending on many factors) so that is our new goal. The school does not typically have children with multiple areas of concern in their program, typically it’s for children with speech delays ONLY so it will be a learning process for everyone.  I can’t wait to see where Ali is at the end of the school year.  I feel like this was the best possible outcome for her this year and I’m very relieved.

Now, I’m sure there are some of you who are wondering about the feeding. After taking a few days off we went back about three months and started those exercises again. She is now making progress and I am managing not to get stressed about it (it’s tricky though)!