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.

Wednesday, December 31, 2008

Happy New Year!

Hopefully we are starting the new year on the right foot...we got the results of Alex's MRI's and both the spine and the brain were normal. We will follow up with both her orthopedist and her neuro in the following weeks to go over the tests in more detail, but for now we are grateful for the good news.

Aaron and I just got back from the funeral of a two year old, Lawson, who lost his battle with a brain tumor. It's been an exceptionally sad day for both of us, so without sounding too sanctimonious, I'd just like to say as we reflect on the past year and hope for the new, please hug your kids tightly and thank God for them and their health.

I hope everyone has a blessed and Happy New Year.

Sunday, December 28, 2008

Christmas

My parents had kept Zach for two nights while Alex had her MRI's and the following night since his cousins Abby and Emily were there too and he did not want to come home! Only problem with staying at MeMe and Pappa's house is that Zach's allergies for cats are off the charts and they have 2 new kitties. By Christmas Eve Zach's coughing and wheezing were getting pretty bad so we headed to my parents house around 2 with the trusty nebulizer. We went to Christmas Eve service at church at 5PM and back to my parents house for an incredibly delicious meal and then the kids all opened their presents. It was a fun night.


Zach at MeMe and Papa's in his Christmas PJ's!

I LOVE this picture of Alex kissing Zach

Allie Bean and her cousin Abby opening one of her presents


Christmas morning we got up about 7:30 and headed downstairs to see what Santa brought. Alex was not herself at all...she was pale and kind of out it...our guess is the anesthesia caught up with her because as you can see from this picture she was puffy and just not "with it". She took two naps and was in bed for the night by 6:15.

My best friend, Dana, flew in from New York on Christmas morning and we had a nice brunch here at our house with my parents. It was really a nice relaxing day. I enjoyed my weekend with Dana and Aaron was so great about us having our girl time. Zach is having a ball with all of his new toys and I'm anxious to break out the Easy Bake Oven Alex got! :)

I hope everyone had a very Merry Christmas!

Tuesday, December 23, 2008

MRI Update

It's been a long and draining day but the MRI's are complete and Alex did just fine. I stayed up until 12:15AM so that I could give her an extra feeding because she couldn't have anything to eat after 1:30AM and her test wasn't scheduled to start until 10:30AM. I think she knew something was up because she was up almost the entire night. We got to the hospital at 9Am and met with the anesthesiologist at around 10:15. The finally took her back at 11:10, and not a moment too soon because she was hungry! And it was her normal nap time so she was getting fussy. They let me and Aaron go back with her while they put her under and while she was resisting at first, after four deep breaths she was out. It was really weird to watch her go out like that and I couldn't help but cry. The only real negative of the day was that I told both the nurse and the dr. that she's allergic to a certain type of tape - they told me they wouldn't use it, but as we went to see her in recovery the first thing we noticed were her eyes...they were swollen and had rashes all around them...guess what they used to tape her eyes shut??? It's so frustrating that EVERY TIME we're in a hospital setting they don't listen to me about the tape - like I would lie about tape, of all things!! She was still groggy when we they called us back to see her and it took her about a minute to acknowledge us, but then she smiled and flapped her hands as if to say, hey...I know you!! She was intubated so it was obvious her throat was sore and her lips were dry and cracked. Aaron had some blistex in his pocket so he coated her lips with that and it seems to have helped. We tried to give her an ice pop for her throat, but she wanted no part of it. I think the worst part for her was taking all the tape off from the IV - she did not like that, but I can't say I blame her. We wont have the results for a week or two due to the holidays, but overall it went well and I'm so proud of the super trooper that she is.

One pretty cool thing she's started doing...yesterday we had a follow-up appointment for her back brace. While we were waiting I said Alex, give me five if you're excited about Santa coming - and she gave me five. I asked her, give me five if you had a good day with Miss Audretta - and she gave me five. I asked her, give me five if you love me - and she gave me five. Then I said, give me five if you love me more than Daddy (shameless, I know!) - but she wouldn't give me five! So I said, give me five if you love Daddy more than Mommy - and she wouldn't give me five! So finally I said, give me five if you love us both the same and she smiled and gave me five!! Today her hair was a mess and I was talking about cutting it - so I said Alex, give me five if you want Mommy to cut your hair and she wouldn't do it - so I said give me five if you want to keep it long and she smiled and gave me five. Fifteen minutes later I asked her the same thing and again, her responses were the same. So I think I may have found a new way to communicate with her and that's really exciting!!!

Thank you so much for all of you that prayed for her and sent us encouraging e-mails - we appreciate that more than you know. She's resting peacefully and Zach is with my parents and his cousins for another night, so I'm going to finish up some last minute wrapping and calling it an early night.

Sunday, December 21, 2008

'Tis the Season!

It's obviously the busiest time of year for everyone and the Hayes house is no exception! We have been out every night the past week with activities and festivities! Alex and Zach both had Holiday programs at school this week...Alex's was first on Tuesday night and she "performed" with her "typical" peers in the first and fifth grade winter program. She was Suzy Snowflake and her teacher, Mrs. Gibbons-Plowcha, was her "assistant" and dressed all in black and literally crouched behind her wheel chair and "danced" her with the rest of her class in the performance...obviously very moving for me and Aaron...here she is with her brother before the show and her and her snowflake wand after the performance...





Wednesday night Zach had his show and sang his little heart out...here he is in action, and another pic of him and his best buddy Aidan...






Thursday Alex's class had a party and the parents were invited...Alex's teacher made her a beautiful ballerina pillow and her friends in her inclusion first grade class (basically she gets to be included with "typical" first graders in music, art, lunch, etc.) made her a scarf...not shockingly, I was brought to tears that they thought of her and wanted to give her a gift.


I will say that I was very proud of myself as I finished my Christmas shopping. If you've been following the threads here you might remember in her birthday post that I mentioned I had dreams of Easy Bake Ovens and Barbie Dolls and felt sad that I still shopped in the infant section for her toys....well as I was shopping I thought to myself...why can't she have an Easy Bake Oven?!? She's doing so great eating, and I can work on fine motor skills helping her stir, and Zach can help her with the oven part...so I'm thrilled to say that I actually bought a gift for her that said for ages EIGHT and over!!!!!!!! Whoo hoo!!!!!!

We're gearing up for her MRI's on Tuesday morning, so if you would say a prayer for all of us, we would be grateful.

Monday, December 15, 2008

Angels Umong Us

You may or not know the history behind Alex's full name...her middle name is Elizabeth, given to her for a good friend of mine, Elizabeth McJunkins who passed away when I was three months pregnant with Alex. When we found out she was a girl, I knew I wanted to honor Beth by giving Alex her name.

This past week was kind of a tough one and I got caught up in all I had to do and struggling to fit everything in between dr. appointments, therapy appointments, obligations and life in general. On Friday as I sat down to go through the mail there was an envelope addressed to Alex, and inside was a letter to me from Beth's mom. The letter stated that their family had decided this year not to exchange Christmas presents and to take the money they would have spent to adopt Alex as their angel, in memory of Beth. I cannot put into words all of the emotions I had going on reading the letter. I cried for Beth, I cried for her family, I cried for Alex and I cried because I was truly, truly touched beyond words by their kindness. As hard as it is to care for Alex, God has blessed us time and time again, but I sometimes loose sight of that.

So to the McJunkins, Howard and Herzwurm families, thank you. Thank you for your incredible generosity and thank you so much for reminding me that there really are angels among us.




Wednesday, December 10, 2008

Quick Therapy Post

Alex was SO vocal on Monday at her speech appointment. Almost every question Beth asked her it sounded like she was saying "YEAH"...and she would look at her, but not be so intent on using her switch...almost to say - I'm actually TELLING you...I don't need that silly thing! :) In an hour session, she ate an entire jar of food - that's a lot considering she has to hit her "yes, please" switch in between when asked if she wants more. We're working with two switches now - yes, please and no, thank you...and a few times she hit no, thank you and Beth actually removed the food...so that's a really big step for her! On Friday she had her "pre-op" physical for the MRI's on the 23rd and she's four feet tall and 46 pounds..she's growing like a weed!
I took these with my cell phone, so they're not the greatest quality...

video

video

Thursday, December 4, 2008

Frustrating Day...

From the minute I put my feet on the floor today it's been a trying day. Alex had a neurology appointment today because a week or two ago I was putting her hair in pigtails and the back of her head felt really weird. Alex has always had plagiocephaly (flattening of the skull), but it was so much more pronounced and the only way I can describe how it feels is like when a pumpkin or melon is going bad...that soft almost squishy kind of feel. Anyway, I take her to her appointment, and it's not one of my most favorite dr.'s to go see anyway, but he starts talking like he normally does at her check-up visits, so I tell him I'm not here for a check-up and tell him about the back of her head...so he ignores me pretty much and continues doing what he was doing - briefly checks the back of her head and says, yep, I feel it. No, I don't remember it being that pronounced before, or the "divot" being there, but she's grown so it's PROBABLY normal....ugggggggh. So I ask him if anything different should be looked at while she's having her MRI and he proceeds to tell me how imaging can be funny and maybe something will be picked up, and maybe not. Then tells me from the reflex test he did (which she pretty much always fails) that he doesn't understand why all of a sudden she wouldn't want to stand, sit or do any of the things that she stopped doing literally overnight because her reflexes were still the same...umm, WHAT? So then I ask him another question about something else that's going on and he looks at me like I'm a complete moron, grills me with questions, so now I do feel like a complete moron, and basically dismisses me.

I leave there and know that I have to run an errand - I had already picked Zach up before her appointment so I was going to just run to Target quick because Alex was out of food and Zach has a Christmas Mother present that's due. The more I think about the appointment as I'm driving the angrier I'm getting. We get to the store and I HAVE to ask this...WHY do people think that the handicap spots are extra spots for the shopping cart return? Does the big blue handicap sign LOOK like a shopping cart return? I mean seriously, as if the people that are going to need that spot are in the position to actually have to clear all the carts so they can park in "their" designated spot. And it's not just today because I'm already in a pretty cranky mood, it's ALL the time and it has become one of my biggest pet peeves. Even if I don't have Alex with me and I park in a "normal" spot, I always collect the carts from the handicap spots I pass before I go into the store because they shouldn't be there in the first place. Sorry I digressed...any way, at this point Zach has fallen asleep, great. I'm unloading Alex, who is connected to her feeding pump, and of course, when I connected her in the parking lot at the hospital after her appointment, I connected her in the way that I have to totally disconnect her so I can get her out of the car seat because the tubing is looped around her car seat strap. Twenty minutes later I have her in her wheel chair and now I'm pushing her and lugging a 40 pound sleeping four year old. Why I'm a glutton for punishment and didn't just give up and go home then I do not know...I always think "I got this"...and in hindsight realize I probably didn't make the best decision...but oh well. So I run in, pushing Alex and dragging a shopping cart behind me...as I'm getting Alex's food she has a complete manic attack and is screaming/laughing at the top of her lungs and pulling her hair out, Zach's whining about how hungry he is and at that point I give up. I check out and start lugging them back to the car. As I get to my car there's a boy collecting the carts who obviously has special needs himself and he looks at Alex and says...she's special, I can tell. And I said yes, she is, she's very special. And he said, well at least you have her and she didn't die. I don't know why but I drove away smiling and thanking him for putting my day in perspective.

My night hasn't gotten any better, Zach is trying my patience like nobodys business, he's also apparently lost his listening ears, and Alex has been a total crank. My head is about to explode so I'm going to crawl into bed and thank God this day over and pray it's a better one tomorrow.

Tuesday, December 2, 2008

More Stuff!

So let's see, the house looks like a Physical Therapy facility on any given day, each day we have to put on glasses, foot braces, thera-togs, bandannas, clip on chewy P's, arm bands and her backpack that holds her feeding pump ~ what else could we possibly throw in the mix to keep things exciting? Ohhh - I know - a back brace!!! Plus, that will add about 8 more pounds while lifting her so Mommy will get that much more of the great arm workout that she's always talking about!

Alex's Orthotist, Paul, was actually quite funny about her brace. It's a new design and pattern and Alex is the first in the area to have this type of brace - so he was very excited that she's the little proto-type for this brace. We'll use it anytime she's doing supported sitting, or going to be in her wheel chair or stroller for long periods of time to help with her positioning. We wont use it during standing or walking exercises since we want Alex to use her trunk muscles and strengthen them as much as possible. If she were to wear the brace all the time, she wouldn't work those muscles and her tone would just get worse, if that's possible! :)

So here's the fashion diva in her new brace...



She thought this was funny - but it CAN'T be comfortable!







Would it be mean to start calling her my little turtle?!? :)