All posts by Bobean's Mom

Happy Birthday. Originally Posted December 21, 2013

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On December 21st, 2009, Ali came into the world. I remember the excitement leading up to her delivery, the silence in the room when she was born and every second of the 6 weeks that followed like it was yesterday.
This is a hard time for me. I relive it every year. I knew the moment she was born that there was something different about her. I knew deep down inside that life was going to be hard. I knew immediately that everything had changed but I also knew that I loved her and that I’d do anything for her. I managed to stay in denial for a while but I learned several very hard lessons over the next few months and went through some really scary things. I sat by myself and watched Ali literally fight for her life and she almost didn’t survive. Many children wouldn’t have survived that. That was the night that Ali proved for the first time but certainly not the last that she was going to defy the odds.
Ali spent her first two years pretty much just surviving. She spent her third year charming people, making everyone love her and showing all her new friends what she’s made of. This year, her fourth year is the year that I think she really started living.
Let me tell you about who Ali is now. Ali is a little girl who can’t sit still. Since learning to walk just after her third birthday, Ali has been into EVERYTHING! She now walks forwards, backwards, sideways and with her eyes closed just for fun. Ali decided in January of 2013 that she would like to be potty trained and in a weekend she was. Ali’s two favourite things in the world besides her family are “Hello Kitty” and gymnastics. Our beautiful girl walks proudly across the balance beam (with assistance), jumps off the vault on to a crash pad and can hang from the rings all on her own. I have heard several times that her progress in the gym is nothing short of incredible. Ali loves to help out around the house. She helps to feed the dogs, she helps with laundry and she helps unload the dishwasher. In September, Ali started a second preschool program so she now goes to school Monday afternoon, all day Wednesday and Friday morning and she loves it! This year, Ali learned all her body parts and her primary colours. Ali learned how to stand up in the middle of the floor, how to stack blocks, lace beads, do a lace card, do wooden puzzle, do a simple shape sorter, to play picture bingo and many, many more fun things. Ali now has several words and is learning new ones all the time. She’s started using two word sentences and will happily announce, “Mommy home” or “Daddy Home”, when Jason or I arrive after being out. She also eats! She loves avocados, yogurt and bananas. She hates white potatoes, pureed meat and anything containing either of the two preceding items. She can tell if there are potatoes in something instantly! She loves to laugh and she is the happiest, most social, funniest little child I have ever met. She has a smile for everyone and loves to say, “Hi” if someone smiles at her. Ali is an incredible gift. What a privilege it is to be her mom. It’s not always easy but it’s amazing and there is absolutely no question that it’s all worth it. I don’t know what the future holds but I know that she was meant to be ours. I am thankful every single day that she’s here. Happy Birthday to my beautiful and amazing baby. There aren’t enough words in the whole universe to say how much we love her.

Back to Eating. Originally Posted October 23, 2013

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First of all, today is Madi’s 6th birthday! Where does the time go?She’s an awesome kid and an amazing big sister to Ali and we are very proud of her!

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!

Trying To Get Back To Our Routine. Originally Posted September 14, 2013

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September is about half way through and we’ve settled back into our school routine. Madi is now in Grade 1 (French Immersion) and is loving it.  She also takes gymnastics.  Ali has returned to her early intervention preschool for the second year and as usual, she walks in like she owns the place! She also wants to take gymnastics so I’m going to start taking her once a week as well.

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)!

 

Many Thanks. Originally Posted September 2, 2013

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Thanks to everyone who responded to my post yesterday with thoughts and caring words and comments. I guess the upside of having had a bad week is knowing how many people are in our corner. I appreciate the support. We are currently taking a feeding break. We’ll reassess after we meet with our therapists later this week. I am also taking an advocating break until Ali starts school in a week.  I feel like if I step away, just for a bit, I’ll be able to help Ali more in the long run.