Anyways, I’m going to do an update!
Ali has been doing really well. She doing great in preschool and she loves it. She’ll probably stay at this preschool for children with special needs for three years and start kindergarten the year after she turns 5.
We have started working really hard at the feeding and speech issues. She works on feeding/speech twice a week at preschool and twice a week in sessions with her therapists. We are currently using two local therapists to work with Ali and because there are two of them, we typically get two sessions a week! The great part is that they often work with Ali together so she loves it! The OT works on feeding and motor skills and the SLP adds the language component as the session goes along. It works really well for Ali and she does some amazing things!
Ali is doing better with putting things into her mouth. She loves to taste things and can bring a spoon of puree up to her mouth on her own or stab a piece of something with a fork and lick it! She is very careful never to swallow anything! If only she’d swallow! We are working on biting with her teeth and on moving things to the back of her mouth with her tongue, the entire process is scary for me. I worry about choking!
Ali now walks independently. She can take 20 or so steps and then she either grabs a wall to rest or takes a spectacular wipeout! We are working on protective reflexes with her but there is a lot working against her in that area so we have to be careful about how and when we allow her to walk. Sometimes, she doesn’t take no for an answer and sometimes it’s okay, sometimes not so much! The walking safety is going to be a long term goal, requiring lot of effort but it’s great to have her following us around the kitchen!
We have also added a behavioural therapist to Ali’s team. Yes, Ali is very sweet, well behaved and social but when a child absolutely requires your undivided attention for the first portion of their life, some issues are bound to arise. Ali has trouble being left alone, she does not generally like to play independently and she throws quite the temper tantrum when she doesn’t get her own way. It’s particularly difficult for Daddy because currently he is the person Ali wants most. If he’s home, she expects to be on his lap! She spends most of her day asking for “Gaga” (Daddy) and is not impressed with me when I tell her that he left for work without her! Anyways, we thought we would get to these behaviours early while she’s still young to avoid a bigger issue in the future!
Ali recently saw her neuroopthalmologist and her eyesight has continued to improve over the year! She is still “legally blind” but we can tell by how she walks at home that her vision is good enough to get around.
On New Years Eve, we got a new puppy. We miss Colton so much and having a new puppy certainly doesn’t fix that. I am constantly reminded of how wonderful Colton was by this tiny little animal that bites everything, pees on the floors of my new house and barks too much. He is of course a sheltie and is the spitting image of our wonderful departed Colton. Colton would no doubt be shocked by the behaviour of our new little friend! 🙂 His name is Burton and after a VERY rough start, the girls are starting to warm up to him and we are all getting along. I still think about Colton every single day. I know that it seems I should have more important things on my mind but his loss was huge for me. I’m happy to have a new little guy and happy that Ali finally likes him! She went from screaming at the sight of this little ball of fluff when we first got him to happily signing puppy and calling him “coco” (Colton). Obviously we’ll work on the name but I’m glad she’s more comfortable with him now!
We have settled into our new home and are loving it!
The big news of the week is that Ali is making huge progress on potty training. We started potty training last Sunday and she took to it instantly. We sat her on the potty that first day and she peed and pooped like she’s been doing it for months. She’s managed to remain dry almost every day with just a few little accidents over the week. She now asks to go to the washroom when she needs to and is in panties at preschool. I haven’t changed a poopy diaper all week!!! It’s time consuming because she needs lots of help in the bathroom but the fact that she’s been so successful is awesome! The downside is that she has clued in that when she signs for the “potty” we drop everything and run and as a result, I’ve spent the majority of the weekend running back and forth to the washroom (with Burton nipping at my pant legs)!
Health wise Ali is doing great! December marked one year without a hospital admission. I guess we won’t be getting our own suite at the children’s hospital afterall!!! 🙂
Thanks to everyone for following Ali’s blog! We appreciate all the love and support sent her way!