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.

Monday, September 27, 2010

What A Great Weekend!

Saturday night we went to the annual Richmond Hope Foundation wine gala which helps create scholarships for the children who go to Hope for the intensive physical therapy they provide since most often it is not covered by insurance.  We had a great time and enjoyed spending time with everyone, including our good friends Dara and Jerry and Christy and Tom.

Jerry, Dara, Me, Aaron, Tom, Christy

Lots of fun for a great cause.

Sunday, my brother was participating in a "mud bog" at the county fair to support a local family whose daughter has a rare form of cancer.  All of the money raised by the drivers was donated to the family for her medical bills.  Jennifer had spent the night while we were at the Gala and my sister had kept Zach for the night so I went to pick Zach up and then Jennifer and I took the kids to cheer on and support Uncle Danny. I have to say it was my first mud bog and I wasn't quite sure what to expect, but I enjoyed it!!

Before the mud

Entering the "bog"

Nice and Muddy!

Beans congratulating Uncle Danny after his run

Alex, Zach and Uncle Danny

When we were done watching him Jennifer and I took the kids into the actual fair.  Zach was riding some rides and then he and I went to play one of the games - my favorite fair game where you shoot the water into a clowns mouth.  Anyway, after we played (and I won!) we were waiting on line for one of the rides and the attendant that was running the game we had just played called me back over.  He pointed to Alex sitting in her chair and asked me if that was my daughter and wanted to know what was wrong with her.  He told me that he had a son with Downs Syndrome and then turned around to the shelf where all the prizes were and asked me to pick out which stuffed animal I thought she would like the best.  He told me he wanted to give her something because he wanted to make sure that she had a great time at the fair.  How nice was that?!?  It just takes one persons small act of kindness to really put a smile on your face and make you feel really good.

They had this interesting swimming pool set up that you could pay $5 for and let your kids get into a plastic ball - it's deflated when they get in, but they blow it up, zip you up, and off you go...(Alex loved the noise when they were blowing the balls up and laughed every time they turned it on - it was funny to watch her enjoying that so much rather than probably actually getting in!) So Zach got in and it was hysterical watching him - he looked like a hamster trying to run around on a wheel - it was impossible for him to stand up but boy was it funny watching him try!


OK, on to the BEST part of the day.  When Zach was on the ride called the Sizzler, Jennifer looked at me and said "Don't you think Alex would love to go on that?"  I looked at her like she was crazy and said "Are you serious?!?" and she said "Yes, I think Beans would love it!".  I was not thinking it was something with Alex's low tone that she could go on.  The ride spins around really fast and the force of gravity pushed you to one side - all I could picture was her slipping out underneath the bar!  So we walked away, Zach did the bubble thing and Jennifer kept looking back at the ride.  I said to her "You REALLY think Beans could go on that?!!" and she said "Absolutely!" - SO, guess what?!?  Alex went on her very FIRST ride!!!  And she LOVED it!!!  Way to go Jennifer for talking me into it because I never would have even considered it.  When we got off the ride a guy waiting in line ran over to help us get her out and said, "Man, she sure did enjoy that - I was watching her smile the entire time!"  And she really did LOVE it - she was smiling and even squealing!  Alex loves when the wind blows in her face so why wouldn't she enjoy being twirled around so fast?!?  What a normal thing that most kids get to do and enjoy just made my day - I was SO happy for her that I had a smile on my face the entire rest of the day - and every time we talked to Alex about it she just laughed and giggled. 
Jennifer, Me and Beans - she is so not sure to make of what's going on!

Me telling her how much fun she's going to have (and telling her to sit up straight)!

Oh Boy!

SO much fun!!!
She also ate cotton candy and some of Jennifer's funnel cake - for the first time, I think ever, Alex got to experience a typical day - priceless. 

Friday, September 24, 2010

Just Some Random Stuff

Last weekend my brother called and said he wanted to have an "Uncle Danny" day with Zach.  He and my sister-in-law picked him up on Saturday, and God love 'em, spent 4 hours at Chuck-E-Cheese...enough said there!  When they got back we decided to go to a fair called Field Day of The Past.  We had a really good time and Zach pretty much ate his way through the fair - a corn dog, cheese fries, cotton candy, candy apple, snow cone - you know all the good healthy stuff! :)


Towards the end of the night Zach looked at me and said, "Mommy, I'm exhausted - I need to go home, take a shower and get into bed"!  Those words have NEVER come out of his mouth!  My sister-in-law was laughing at him dragging himself into the house and said "Ha, we did that to him - he didn't do that to us"!  I think they both thought the tables were going to be reversed, for sure!

Yesterday the kids both had dentist appointments.  The last time Zach went to the dentist he loved it, this time, not so much!  You can see from the look on his face that he was not comfortable with being there.

Alex was watching him the entire time, and thought the whole process was very funny....

...until it was her turn, look at the death grip she has on her bandanna!

I have been trying to get Alex in her walker around the house - her latest physical therapy sessions have not been going well from a walking standpoint.  We've taken the seat off her walker because if she feels it, she just wants to sit and not take her steps.  The hard part is that it is really a two person job getting her in the walker and helping to facilitate her legs to take her steps and help support her wait because most of the time she collapses her legs and just comes down on the support like a ton of bricks (I'm not painting a very good visual, I'll have to take a picture of her walker and post it later). Anyway, the support is around her chest, if she collapses down there's a good chance she's going to snag her g-tube, not to mention slip out of the support and fall.  As I said it's really a two person job, but since Alex is usually asleep by the time Aaron gets home, it's just me...but I'm DETERMINED to get her walking better and without so much support.  The bigger she gets, the harder she's getting to carry around - my knees and back already creek and ache so I can't even fathom how much harder it's going to be the more she grows.  So I've been trying to manage her in the walker by myself and it is NOT an easy task, it's basically like trying to nail jello to a tree!  A true workout for sure - I have so much respect and admiration for her therapist Shannon!  Yesterday as I was getting her dressed for school I noticed a bunch of bruises on her legs from what I can only guess is from me trying to facilitate her legs - can I just tell you how horrible I feel?  I know I'm trying to do a good thing by getting her walking, but if she's bruising, I'm probably hurting her, no?  Have I mentioned how her not being able to verbalize is the worst?? This isn't a good picture of her at all, but you can see the bruises on the top of her leg, and she has some on the back of her legs too :( 


Last night I had Back to School Night for Zach so Jennifer volunteered to come and watch the kids for me.  It's been two weeks now that we haven't seen her and I was SO excited to see her.  When she walked in she ran right over to Alex who was laying on the floor watching TV with Zach.  She stood her up and asked Alex for a hug...not only was Alex grinning from ear to ear, but she put her arms around Jennifer and gave her a hug!  Then she pushed away from her - looked at her face and hugged her AGAIN!  She did that four times!  And the last time she leaned into her she had her mouth open and was giving Jennifer a KISS!!!  I knew I would miss her like crazy, but it was REALLY apparent yesterday that I haven't been the only one!

Thursday, September 23, 2010

Asthma Update

Since Zach's been having such a tough time with his allergies and asthma lately I finally got in with his specialist yesterday (thank goodness he had a cancellation, the first available was the end of November!)  We went over what's been going on with him, the fact that we couldn't get his pulse ox over 93 for a few days last week, his junky cough that's been hanging around for over a month, his rapid breathing, especially after running, etc. etc.  The doctor said he really wants to put Zach on Singular, that it's the best asthma/allergy medicine out there right now.  The problem I have with that is we had Zach on Singular about 2 years ago and he had MAJOR behavioral changes while he was on it.  I later found out that behavioral changes can be a side effect of Singular.  Zach's is normally sweet, loving and funny but while he was on the Singular (which didn't last long), he was MEAN.  And I mean MEAN!  I expressed my concerns to the doctor and he said that he had seen that before in other patients, but now that Zach is older and has built more body mass, there's a good chance that he will not have the same reaction he did two years ago.  I'm so hesitant to give him something I know he reacted adversely to in the past, but at the same time I don't want him to have such a hard time breathing and being sick every 2-3 weeks.  I think I will start the medicine tonight, so if he does in fact have the same reaction, it will be over the weekend, while he's at home, and not at school.  If he does have the same reaction, the next course of action is to have him go through the skin testing again, which is NOT fun.  Zach's pretty much allergic to everything environmental (dust, trees, grass, weeds,  pollen, mold, etc.) If his reactions to the skin testing are worse than they originally were, he will have to start going in every month for allergy shots.  If the results are the same, the doctor said there is a good chance that we will just have to go through a few rough seasonal changes with him, but that as he grows and his airway grows, that he could potentially grow out of all of this.  Guess which option I'm praying for!

Thursday, September 16, 2010

Ahhh...I LOVE Fall....

Well, I used to anyway - before allergies and asthma!  Poor Zach, sick ONCE again.  It's only been 3 weeks since his last attack and he's Miserable, with the capital M. I got the call from school to come and pick him up on Tuesday and when I got there he was breathing SO fast.  I brought him home and hooked him up to Alex's pulse ox machine (a machine that measures how much oxygen they are getting in their lungs) and he was only at 93 (normally kids should be at 100% and things get a little 'iffy' if they drop below 95%).  We had a 3:45 appointment with the doctor anyway, but I didn't like the way he was breathing and he was a limp little noodle, so I drove him straight to the Dr. and they took him back right away.  Even after a breathing treatment with steroids his pulse ox was still only at 93%.   His cheeks were so flushed too and his temp was 101.6.

After his treatments, some Motrin and an ice pop he seemed to perk up so the Dr. was comfortable enough sending us home since I have a pulse ox machine and oxygen at home (maybe there's a perk to having a special needs child after all?!?)

His pulse ox was still low yesterday so we kept him on the breathing treatments every 3-4 hours...I think you can clearly see the difference in this picture of how much better he was feeling!

As I'm typing, Alex has been sleeping for a few hours but is starting to cough...a lot....sigh, I think this is going to be a really l-o-n-g Fall!

Thursday, September 9, 2010

Zach Gets His White Belt!

A few weeks ago Zach started taking karate classes - and he LOVES it!
Sometimes I really feel, no matter how hard we try, that Zach feels like he's always living in Alex's shadow.  My guess is that a lot of kids who have a special needs siblings feel like that at some point or another.  I think the older Zach gets and the more independence he has we rely on him more to do things for himself that in a "typical" family we would still be doing for him because he's the "baby", but having to tend to every one of Alex's needs I think sometimes he feels slighted or even a little envious of all the attention Alex gets.  Again, we make conscious efforts to not let him feel that way, but I think it's inevitable.  Anyway, I really wanted him to be involved in something that was all about him, that he could set goals for himself and feel really proud of himself when they were reached.  We've done basketball, t-ball and swim team, but those are all seasonal things that end.  Karate is a year round sport and something he's been talking about trying for a while now.

Yesterday he tested for his very first belt and he was SO excited.  One of the exercises they have to follow before they can get their belt is to write a letter of appreciation to their parents.  Zach had to write a letter to me on why he loves me - which went like this:

Dear Mom,
I love you because you play games with me.
I love you because you ride bikes with me.
I love you because you make tacos for me.
I love you because you're the best mom in the world.

So cute. 

Anyway, here are some pictures of him testing.  He was SO happy and SO proud of himself when he got his white belt - he wanted to know if would be ok if he slept with it. :)

Tuesday, September 7, 2010

Back To School!

The kids were both SO excited this morning!!!  We kept telling Alex all weekend that the bus would be back to bring her to school today and I actually think she understood - we have ALWAYS talked about the bus coming every morning when we were getting her ready for school, and honestly, it is her most FAVORITE part of the day!  She yells and squeals so loudly when she sees the bus that it's really hard not to get excited for her seeing how happy it makes her!

She had a REALLY great day - she was focused and happy the entire day.  Even when she came home she was so focused, she and Jennifer made her eye gaze choices, she sat in her corner chair, she worked on an art project, she ate like a champ...it was OBVIOUS she has been missing school and I can't remember the last time I saw her this happy...for an ENTIRE day!!!
Zach was super excited about school starting today too - he woke up at 5:45 this morning (normally I can't drag him out of bed!) and wanted to get dressed and leave right then.  When I picked him up this afternoon he said he had an awesome day, he didn't get in trouble (lol!) and couldn't wait to go back tomorrow.

All around, an AWESOME first day for my big "second time" second grader and my first grader.  I'm so excited for what a promising year this is going to be!

Sunday, September 5, 2010

Grandma Hayes

Aaron's Grandmother passed away this week.  It's been a sad time for everyone, obviously.  Grandma Hayes was 90, and I am so thankful that we were able to be in New York to celebrate her birthday with her this past November.  It's also very sad that Grandma Hayes was was the last surviving Great Grandmother for our children.  Grandma Hayes was an amazing and caring woman who loved to cook, baked amazing cookies and loved being with her family.

God speed Grandma Hayes - you were loved by so many and will be missed by so many.