I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Tuesday, January 13, 2009

Catching Up...

I can't believe it's been two weeks since my last post. I've often said it's because things in the Hayes house have been crazy - but who am I kidding? That's just how the Hayes house is and it's not a fleeting thing - as Aaron would say - it's just how we roll! :) For the past few weeks I tried having an evening nurse come to the house to help me with Alex and allow me some "free" time to grocery shop, spend time with Zach, etc., but to say that she didn't work out would be a gross understatement. We've been really spoiled by Audretta, Alex's day nurse, and she is truly like one of the family, and really a one of a kind person. She absolutely loves Alex, constantly has her best interest at heart and is one of the hardest working women I have ever met.


Alex is doing better this week - last week was tough on her going back to school and getting back in a routine after the holiday break. It was also so rainy last week and she honestly does not do good when it rains - I think it makes her joints hurt.


Her eating is really getting better and better each day. We have an appointment in February at the feeding clinic at Children's Hospital. My goal is start making her food and feed her a blenderized diet throughout the day and make up whatever nutrients she needs at night through her feeding pump. To think that the possibility of not being slave to her feeding pump every two hours is potentially in our near future thrills me to no end! I just hope it's "doable" and the feeding team agrees.

We met with the orthopedic Dr. today to go over the MRI results and it really is a double edged sword. While I'm glad the MRI's were fine, part of me was hoping something would show up so we would have something to fix. So the plan now is to really hit the ground running with her physical therapy again. Her PT really wants her to go back into the intensive program in May which will be for three hours a day for three weeks to really work on her motor planning and strength. I find it really hard because Alex has so many areas to concentrate on, like balance, weight bearing, fine motor, cognitive, oral, eating, and on an on that I just get overwhelmed. I can't pick one thing and say this is what I want to focus on, because quite frankly, they are all so important and will have a huge impact on the entire family. Having her walk, even if it's supported, will do so much on our bodies, not to mention some independence for her. Eating by mouth is huge because we wont have to lug the feeding pump everywhere and be on a constant two hour schedule. Fine motor and cognitive are so important because Alex doesn't initiate any type of play or play independently with anything so it's constant entertaining her. Saturday I was so exhausted and I just didn't have it in me to work on anything. I feel like I'm letting her down if I'm not constantly engaging her in something. I know that's ridiculous and completely unrealistic, but it's how I feel and I can't help it. Nothing's worse than a mother's guilt I suppose!

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