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)!

I usually try really hard to be strong and to let the world know how amazing Ali is and how proud I am of her but right now, I’m frustrated and to be honest, I’m devastated. I’m trying so hard not to be because that will only make it worse but I honestly want to give up. One of the main aspects of feeding therapy is to keep it fun, not push too hard, not force it but I don’t know how much longer I can do this. Every meal in this house is a huge event. There’s a meal to prepare for the rest of us and then there’s puree for Ali and things to dip in the puree and crumbs to dip the purees in and throughout the meal we encourage biting and dipping and licking and we also work on drinking. Once the meal (or snack because I do this at snack time too) is cleaned up and believe me, it’s a huge mess, then we tube feed her. She gets a homemade blended diet with lots of real foods and supplements. Then we do it all again, usually 5 times a day. Between all this, there are other therapies to do, household chores, another child that has needs of her own and two dogs.

So there you go, the success is great but the setbacks really hurt and they are sometimes really hard to recover from. People keep telling me that I should still be happy, after all, I now know that she can swallow and I know that the goal is achievable. I understand how people could see it that way but if you don’t live my life than you can’t possibly understand how discouraged I feel right now. It’s like playing in the Stanley Cup Final and losing in a game 7 shootout, who cares if it was achievable or not, it’s gone and to bring that cup home you have to start all over again. Only that’s a game and this is our life and this is my full time job. I feel so much pressure. We are responsible for making sure the one day Ali eats like the rest of us, it won’t happen all by itself and it literally takes hours a day to move her towards achieving that goal.  To have a huge set back like this right after having such a huge step forward honestly makes me want to quit. I won’t though. I have to find some way to hide the frustration and sadness and keep on doing this because if I stop or I get frustrated or mad then I’m going to set her back further. I need to find some way to pick myself up and keep going and sometimes it’s really hard. This is really hard.

On top of that we are going through a funding transition. Ali is now eligible for Program Unit Funding which is given to the school board to help prepare children to enter the school system. When a child becomes PUF eligible they lose services that aren’t given through PUF. The theory is that you use the PUF funding to rehire private therapists but in small towns there is no one to hire. So the CNIB transferred her to a different department and we lost our vision therapist, I can’t find one to hire with PUF so now, Ali will go without but that’s not a huge deal. The big issue is that Alberta Health Services does not provide therapies to children who our PUF funded so we are going to lose our speech therapist and we’ll have to either have an SLP from the city see Ali by video conference or use two thirds of our funding to pay one to commute from Edmonton. I have been fighting with AHS but it’s time to give up that fight because every time they give me a loophole and I manage to squeeze through it, they take it away. I have no doubt in my mind that they owe Ali this service (because for Ali her oral motor skills are a health issue, not just school readiness) but they’re not willing to budge so that’s that. The reason this is such a huge problem for me (and will be for Ali) is that over the past year, Ali’s feeding therapists and Speech therapist have worked very closely and we have seen so much progress in both feeding and speech and I am afraid that losing a valuable member of this team will set her back. Her oral motor issues are all so closely related that our therapists have to work as a team to see progress and we’re breaking up that team at such a critical time. I have a child with the worst speech delay a child can have, her oral motor skills are so bad that she’s completely tube fed and yet it is the opinion of AHS that her speech issues are not their problem regardless of whether or not we have the ability to find her a similar level of care elsewhere. Especially now, when I am so discouraged, changing service models and losing our SLP feels like the end of the world even if it’s not.

I am lucky to have two amazing children and I know that. I am happy to stand beside Ali through everything and if I have to spend my life doing therapy with her I will because that’s what moms do. I’m so proud of her and whether or not she’s eating, she’s amazing and I love her to the moon and back but what I need right now is another step forward because these backwards steps are too hard to deal with.

Normally I don’t write posts like this but I’m trying to find a way to get back on track (me, not Ali) and I thought sharing might help. So thanks for reading. 🙂