Wednesday, February 3, 2010

My How Far She Has Come!

Wow, I am a really bad bloggy mama!!! It has been since Christmas since I have written an actual update. The last one wasn't much of a blog, so that doesn't count. I have been very very busy with Jog for Joubert and with running in general, add that with working, and chasing a toddler and things like blogging get pushed to the wayside.

At any rate, we had our 6 month review with Haley's case worker with the Early Intervention program yesterday. We just went over her goals to see what goals she has met and make up new goals for the next 6 months. It has been almost 1 year to the date that we first got involved with the Early Intervention program and little over a year since we started therapy. Sitting down with her case worker and going through her old goals really shocked me to realize how much progress she has made since this time last year. I mean, its not like I didn't think she was progressing, but to look back at where she was and compare it to where she is now, it was breath taking!!!!

This time last year Haley could not even hold on to our hands with enough strength for us to pull her up from a laying to sitting position. Let me repeat......could not even hold our hands so that we could pull her up!!!! At almost 1 year old, she could not roll, change positions, crawl, stand....she pretty much just sat (or laid) where ever you put her. Today she is crawling all over the place, rolls like a mad-woman, can get her self in to pretty much any position she wants, has almost perfected pulling up to standing by herself, walks with the assistance of a walker, and PT has even reported a few independent steps....although I have not witnessed this with my own eyes. There used to be days where I wondered if we would ever see the day that she rolled over, now she is on the verge of walking. It is amazing!!!! Her fine motor skills are just awesome, maybe even a little advanced for her age. Talking, now that is still very delayed. I have yet to hear her say a real word. One of her therapists, Miss Alicia, tells me week after week about all the words she says. I don't doubt this for one second, she just hasn't said anything for us. Haley really likes Miss Alicia, so maybe she is more talkative for her. (and if you are reading this're the BEST, you rock!!!!!) Also I think that I expect to hear words pronounced correctly instead of baby jabber. I have yet to receive my baby language decoder ring in the mail, so maybe once that arrives, I will be better able to understand "Haley Language" LOL!!!! I'm sure language recognition in first time parents is often the reason we think there is a speech delay, we just don't get it. Her sensory processing issues have improved a lot also. Last year, you could barely touch her arm and she would recoil.....that is called tactile defensiveness. She also had a lot of trouble with motion changes and fear of falling. Both of those are much better, but she still does have trouble with certain textures....HATES (almost terrified) of stickers, which is unfortunate because a friend sent us something for a sticker club, now we have tons of stickers and can't use them.....YET!!! She also is not a fan of Play-Doh. But these are all things that we are working on.

On a very silly note, Haley is a total copy cat and will mimic most anything we we thought it would be funny to teach her to do a "fist bump" know just in case she meets Barack Obama she can greet him appropriately. (LOL that one was for you Daddy). Its her new favorite thing to do.

I can't remember what all of our new goals entail. A lot of focus will be put on speech and language. Of course, gross motor wise, walking is our goal. And with cognitive and fine motor skills we are going to be working on typical things other youngsters her age are doing....shapes, colors, etc.

I still have my days where the amount of work that goes into having a special needs child is almost overwhelming, lots of days where I moan and groan "why us" and almost mourning over the "normal" child we expected. It is often hard for me to be around my friends with "normal" children Haley's age....seeing what she "should" be doing. And it is almost maddening when people tell me maybe it is a blessing that Haley is least I don't have to chase her around everywhere. I have come to realize people say this because they don't know what to say, they mean well, but really????? I imagine there will be things like this we will have to endure and deal with for a long time. Although life took a different path than we anticipated, we do not regret anything, nor would we change it. It is what it is.

I'm so sorry I don't have any pictures to post right now. Along with blog neglect, I should be charged with failure to take enough pictures. How many years of blogger jail time does that get me??? This time last year my obsession was photography....couldn't get enough of it, my family and friends were literally sick of hearing about it. Now (20lbs lighter I might add!!!!) my obsession is running, but I promise, I will get some pictures up ASAP!!!!

Speaking of running, please visit my Jog for Joubert Syndrome blog and support my cause. There is information about J4JS on the right side of the blog and several links you may want to visit. I am hosting a raffle for a "runner's gift basket" on that blog sometime soon, even if you are not a runner, there are some great goodies in there for everyone. Thanks!!!!!

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