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.

Saturday, January 31, 2009

Rough Week

I've started to post this several times this week but hit delete because I felt, well, inept and a little pathetic sounding, but every time I sit down to do an update the same thoughts come out, so here it is.
It's been a pretty tough week on me. Working, struggling to get from one appointment to the next, trying to split myself equally between the kids and failing miserably. Zach starts to get sick on Tuesday, and quite honestly, when you've dealt with so much illness with a special needs child, you tend to be more relaxed with your "typical" child. By Wednesday night I was on the phone with the on call pediatrician, which thankfully is the pediatrician that actually sees my kids, because Zach's pulse ox is low and he's wheezing even after being on breathing treatments every four hours. Thursday I take Zach into the office and he has walking pneumonia. Fabulous. Wednesday and Thursday night I was up every three hours to give Zach breathing treatments, and I'm T-I-R-E-D. Friday morning I wake up to this odd sound coming from Zach's room so I jump up and run into his room only to find him still asleep and vomiting...on his back. I wake him up and let him finish and then put him in the shower. Got his bedding all changed and put him in my bed because he's so lethargic. Ten minutes later, back up changing all my bedding because, yep, sick again. So we head down to the couch to try and lay back down. Thirty minutes later, sick yet again. I'm running out of places to put him because the laundry can't keep up with the vomit!
On top of all of that, Alex has been really giving me a run for my money. I need to put all this in writing because it's my "therapy" so if it comes out wrong, or off base, I apologize. But the irony of it all really hit home this week. How can I love someone with every ounce of my being, and hate something about them so vehemently that it makes my stomach hurt? I love Alex for who and what she is, but I honestly hate her disability. I hate the fact that she has such a high pain tolerance that she can rip her hair out and bite herself till she bleeds like it's nothing. I hate the fact that what we take for granted every morning when we put our feet on the floor she can't achieve no matter how much time and effort we put into helping her. I hate the fact that I can't hear her call me Mommy or say I love you. I hate that she goes into such a manic attack that there's nothing she or I can do to stop it. I hate the strain her disability puts on our family. I hate the fact that when Zachary is sick I still have to tell him "just one second buddy" because I have to do everything for her. I hate the fact that I had to cry for hours last night because the thought of the next year with her scares more than anything in this world. I honestly fear how I am going to take care of her as she gets bigger. I can barely get her in and out of her wheel chair, or in and out of the car because she's getting so tall and heavy. Yesterday I was trying to get her upstairs using our chair lift and she completely extended her whole body and would not bend her legs for me to get her up the stairs. I hate it, hate it, hate it. I hold steadfast to the bible verse "If God brings you to it; God will bring you through it", but I honestly don't know how much more strength he can bring me. I'm being real and I'm being me - please don't question for one second my love for my daughter, I will continue to do everything I can for her and leave no stone unturned in trying to better her life, but the more time that goes by, the more defeated I feel.
That's my vent for now, I'm beat and heading to bed...

Thursday, January 22, 2009

I'm SO excited!

Quick post...I just got an e-mail this morning that Alex's laptop and Living Books Software have been approved through the Technical Assistance portion of her waiver!! I am so excited for this to arrive - the things we can do with that, along with her switches, are huge toward her cognitive gains in cause and effect and communication! She loves to use the computer at school and I can't wait to integrate all of that at home!!! :)

Monday, January 19, 2009

Giving Back

So many people have done so many wonderful things for Alex, that I started thinking a few months ago about how we could give a little something back. I came up with donating Alex's hair. Personally I think she has the most beautiful hair, even if it's almost always up in a ponytail! So today she, and her best bud, Jenni had an appointment at a hair salon so they could both donate their hair. After a lot of research Jenni found out that Locks of Love charges clients for wigs on a sliding scale. She found two foundations that don't charge people for the wigs that they receive, so we went with those. Jenni's mom Sherri drove to the salon Ahead of Hair this morning and they said they would cut their hair free of charge, so at 2:00 today, this is how it went:

Getting ready to measure...

One last look at the back!The first ponytail cut...The actual haircut...
Time to style it!The two ponytails that will be donated to Pantene's Beautiful Lengths:
The stylist who cut her hair was really great. She was so nervous that she was going to cut Alex that she was literally shaking! She did an amazing job considering Alex was pretty much a moving target!

Here are two of her before shots:

And here's my beauty queen after she's donated 8 1/2 inches!

So beautiful!

Now it's Jenni's turn! (She has a LOT of hair!!!) She donated 12 1/2 inches to Wigs for Kids.

Last shot of the back!

The first ponytail cut...

Let the styling begin!

The finishing touches....

The finished product!

Here is a picture of the girls yesterday...
And here they are checking each other out today! :)

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!