Some Great Times! Originally Posted November 23, 2011

So with Ali’s 2nd birthday approaching quickly, I’ve been thinking a lot about how far she’s come in her two short years! Ali is turning into a truly amazing little person and she has been doing very well over the past few weeks (aside from a nasty flu followed by a dreadful cold).

Ali has been working very hard on learning all her developmental skills. She now scoops food out of a bowl and is able to bring it to her lips for a little taste. She still doesn’t swallow anything I don’t think but she certainly has demonstrated that she has the motor skills to feed herself when the time comes! Ali is working very hard at learning to walk. She can walk quite nicely while holding on to Mommy’s or Daddy’s hands and she really enjoys practicing! She will never crawl, she’s much closer to walking than crawling so we can skip that step. We are fairly sure that she could stand unassisted for a few seconds (while wearing her ankle foot orthotics) but she is quite nervous about trying and as soon as we let go she reaches for whatever she can grab. She could probably stand all afternoon while holding onto something (like the coffee table). Ali has also gained an appreciation for colouring. She will quite happily sit in her high chair and “doodle” with Madi for a few minutes, although she also attempts to eat her markers.

Ali has recently been assessed by the CNIB again and they thought that there was dramatic improvement in her vision. She responded properly to simple commands, made good eye contact, showed off her fine motor skills and throughly charmed to therapists. I think her finest moment was when they showed her pictures of other children in simple poses (like hands on top of their heads) and Ali imitated them! I almost couldn’t believe my eyes!!!!! The vision therapists said that Ali is using her vision to its fullest extent and that she’s doing great!

We’ve also had cardiology follow up recently. Ali’s heart condition appears to be stable.

Ali went to her pediatrician last week. I didn’t really have any concerns so he played with Ali and her favourite doll for a few minutes and then he looked at me and said, “My God, is she ever high functioning!” I think with that comment he made my year! This is the same doctor who led us to believe that she’d probably be fairly low functioning so to hear him say that was amazing! I am so proud of my little girl and of how well she’s doing!

Today Ali learned a new game. I decided to play hide and seek with her. I would run and hide around a corner and yell, “Hey Ali, come find me”. Then I would hear the tell tale sounds of Ali running in her walker and soon she would be parked right in front of me screaming with delight! Madi joined in and the three of us played hide and seek for well over half an hour. It is so important to appreciate the little things in life and having Ali participate in a family game of hide and seek was awesome!

Ali will be admitted to the hospital on the morning of December 12th for a sedation MRI. We need to check the structure of her brain to make sure that there is no crowding (Chiari 1 malformation) or hydrocephalus. This procedure will require either a 1 or 2 night hospital stay because of her risk factors when undergoing sedation. Please keep her in your thoughts! We also have an ultrasound coming up on December 20th to screen for cancer. Please keep ME in your thoughts for that because I’m a little paranoid these days! 🙂

 

 

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