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, August 24, 2011


Ummm...how did it get to be the end of August?!?  Wow.  One blog post all month...crazy :)

Things are good.  Alex has been doing well.  No seizures since her sinus infection.  She is growing like a weed.  I was looking at recent pictures I took of her and I can't believe what a big girl she is becoming.  I know she's excited to start school and get back on a routine - but I have to say she has had a GREAT summer.  She's been all about town and quite busy.

A few weeks ago I didn't make it to her therapy session and her nurse, Tabitha, sent me this video.  All I could think about while I was watching it is that she truly, truly inspires me.  When I think things are tough, or a challenge too hard, I'm just going to come back and watch this.  She works SO HARD.  She is such a trooper.  This is one of the first times she has walked without a trunk support.  She works so hard every day for the littlest things and she really makes me stop and reflect and not take things for granted.

EVERY day Alex watches the SAME Elmo video.  Without exaggeration, she probably watches it 4-5 times a day.  It's not that she doesn't have 100 videos to choose from, but this is the ONLY one she responds to.   Today Tabitha put in a "new" video and there was an elephant in it and Alex thought it was hysterical...Tabitha said she repeated it over and over again and Alex had the same response.  So funny!

Quick Zach story....he had his seven year old "well" check up on Monday.  With all of the issues Alex has had with vaccinations I've either denied or held off on some vaccinations.  His school called before the end of the year and said that he would need his MMR booster before he could come back in the Fall.  So Monday we went and I told him it was for a physical and yes, he had to have a shot.  The doctor, who we LOVE, is so great with my kids and knows us very well, obviously, and spends extra time with us.  After he did the normal checks he asked Zach to lay down and went to look at his "private" area....Zach was having no part of it, covered himself and said NO!....the Dr. didn't skip a beat and said it's OK Zach, Mommy's, Daddy's and Doctors can look....and Zach said NO!  So he calmly said, Zach, I just need to make sure everything looks OK and is where it should be....Zach didn't skip a beat either and said, "Trust me, it is and it's just fine!"  So I held his hands down and in 2 seconds that part of the exam was over.  When the visit was done, the Dr. said, so Zach, do you have any questions?  And Zach calmly said, "Yes, can you not look in my pants anymore?!?"....to which the Dr. replied - I promise I will not look in your pants...for at least another year!"  Don't know why - but I got a big chuckle out of that!  According to the Dr. Zach is tracking to be 6 foot tall....go Zach :) 

Yesterday was a pretty eventful day since we had an EARTHQUAKE!  5.8....wow!  Zach and Ronica were up at the park fishing and Tabitha was taking Alex to therapy.  The phone lines were so tied up I couldn't get in touch with either of them for quite a while and needless to say I was quite freaked out! 
This weekend we are supposed to leave for a MUCH NEEDED vacation but it looks like Hurricane Irene has other plans.  Sigh.  An earthquake and hurricane in the same week...really?!?

Monday, August 8, 2011

Checking In...

First....I have to say a HUGE thank you to all of our family and friends for all of the visits, phone calls, texts, e-mail and facebook messages  - you have no idea how much your messages mean to us.  Old or new, we are constantly blessed by the amount of people who reach out to us when times are not so great.  It's so true that when the chips are down, you find out who you can truly count on and if you know it or not, you make our day and we are so, so thankful for you.

Alex has not had a seizure that we know of (questionable one last night) since Thursday.  She's still not 100% herself and has had her moments of crying and not being herself, but it's not as bad as it's been the past few days and hopefully she'll continue to feel better in the coming days.  We're all really tired and just looking forward to her feeling better.  I will say that our pending vacation cannot come soon enough - I think some fun in the sun is just what she needs!

Onto Zach's birthday wrap up. The party was a great success...18 of his friends showed up, he had a lot of fun, and oh my goodness, he made out like a BANDIT!

Aunt Dana and Uncle Shane

Uncle Danny and Aunt Rebecca

Alex in the pool with MeMe and yes, her beloved Papa!

Alex and Ronica!

Daddy and the birthday boy!

Mommy and the birthday boy!

Birthday Love!

The Cake...

 One excited boy and his cake! 

 The loot...I'm embarrassed to say this is not all of his presents, just what his friends brought...

 Happy 7th Zach...you are beyond loved little man!

Friday, August 5, 2011

Seizures and Sinuses

I know I still owe the Happy Birthday Part III post, but it's been a bad week here.  I will say the birthday party was great and Zach had an amazing time.

Alex on the other hand, not doing so great.  She's had 4 seizures this week and is just miserable.  She's been sporting a beautiful tan this summer, but this week she is just as pale as she can be.

Yes, that's how pitiful she's looked the last week.

Alex has what is called a Sleep Safe Bed and it's all enclosed so she can't fall out.  It's made out of maple wood and she's had it for the past 4 years...it looks like this:

We always try to pad it as much as we can since it's made of wood and she moves around so much, but when she had one of her seizures this week, she was convulsing right at the end of the wooden part of her bed and stripped the skin from her toes:

Despite the seizures, she has been miserable and not at all herself - she has been biting her arm to the point where she has drawn blood, has been pulling her hair out and just all around unhappy.  I suppose it's quite bittersweet, but all she wanted this week was to snuggle with me.  Normally she loves to have her own space, but she's been so content to sit with me on the couch for hours at a time.  She's been reaching for me and wanting hugs.  She's never done that before and while it's hard to see to her like that, at the same time it's so gratifying to me as her mom that she feels bad and wants me to comfort her...a TYPICAL reaction.   I took her to the pediatrician yesterday because I just KNEW something was wrong.  The Dr. examined her throat and ears, and once she got to her nose she said "oh my goodness"...apparently her nasal passages are so swollen from a sinus infection that they were almost 100% blocked.  She said when she was laying down it's probable that she can't breathe and that her head probably feels like it's in a vice (feeling like a crappy Mom as I look at her with a tight fitted pony tail on the top of her head). 

Bottom line....the Neurologist upped her medicine for the seizures and her pediatrician has her on meds for the sinus infection, which they feel triggered the seizures.  Hopefully she will start to feel better in the next few days because my happy, go lucky girl has gone from all smiles to being completely miserable.  It's been 4 days now and I miss my happy girl and  just DO NOT like seeing her like this :(