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, July 30, 2013

Happy Birthday Zach!

On Sunday we celebrated Zach's 9th birthday.  Seems very hard to believe this is his last single digit birthday.  Everyone always tells you to enjoy the time when your kids are young because it goes so fast - and you think to yourself, yep, okay, sure.  But one day they are in a bouncy seat, then toddling around  in pre-school, then they are in kindergarten and then before you know you they are 9!

He woke up super excited and kept saying, "Come on, let's get my day started!"

His Grandma Bev and cousin Jack were visiting from New York to help celebrate his birthday.

We opened a few presents....

...and read some cards....

...Zach's loves playing basketball  and he's been playing in our driveway on a plastic Fisher Price basketball net that he's had since he was about 3 - so it's about time he graduated to a big boy net!  Unfortunately we waited too long to order it and it didn't arrive on time, so we had to show him a picture of it on my phone...but he was excited nonetheless!

He was a happy boy :)

After presents the birthday boy requested pancakes and bacon. 
So we sang a little Happy Birthday and made a wish on a pancake :)

The birthday boy and his Sissy :)

After breakfast we all got ready to head to the pool for his pool party with his friends and our family.   I am SO thankful we had good weather.  All week they were calling for a 60% chance of thunder storms and rain and I did not have a Plan B - I had 20 kids coming so I was hoping and praying the weather would hold out and I'm so happy it did! 
Alex got to come out of her casts and enjoyed some pool time with her Daddy.


And Jack had fun swimming with his Uncle and cousin too!

 If you read my post about his camouflage room, then the picture of his cake will come as no surprise!   Nothing says happy birthday like a few deer!
He loved his birthday serenade...
...and made another wish!

He really does have a GREAT group of friends!

He wanted to cut the whole cake himself.  Clearly I'm not ready to let go that much :)

Family picture time.

Grandma Bev and Jack
MeMe and Papa

Aunt Dana, Uncle Shane and cousins Abby, Cameron and Emily

My favorite part of his birthday was the end of the night.  We had just come home from a great dinner that our friends Leslie and Scott made for all of us.  He came into my room and sat on the end of my bed and was talking about his party and what a great day he had.  If you read this on facebook sorry for the repeat, but how can I not repeat what he said?!?  He thanked me for his party and said thank you for my best present...which present is that I asked?  My life he said.

Happy 9th Birthday Little Man.  You bring us so much joy.  And yes, no matter how old you are, you will always be my little man.

Saturday, July 27, 2013

A Zach Brag!

Zach finished up the swim team season this week.  He did an awesome job this year - he ribboned in almost every event he swam.  He had so much fun this season he informed me yesterday he wants to swim year round.

He also made qualifying times for the Division Championships in three different strokes - breast, back and butterfly and he particpated in the Champs events on Thursday and Friday of this week.  I couldn't make it on Thursday so a big huge thank you to Ms. Dana for taking him for me and allowing him to participate.  He was so excited that he was picked to go - he said he knew it wasn't, but it felt he was at the Olympics! :)

Ribbons are awarded for places 1-8 and Zach ribboned in the back stroke - which is actually his worst stroke.

Way to go Zach - we are SO proud of you!!!

Wednesday, July 24, 2013

Round Two!

Yesterday was round two for the casting.  Alex was not a very happy camper to begin with that is for sure.  She cried a bunch, especially when Shannon stretched her a little further - BUT, her legs are stretching - YEAY!  I knew they were, I could tell a pretty big difference over the weekend.  It was much easier to get her casts back on, and when we stand her up she will still start out with her knees bent, but after a few seconds, she straightens them and stands up a little taller.  Last week she started out with her left knee at negative 25 and yesterday it was a negative 15.  Her right knee was at a negative 20 and yesterday it was a negative 12!  Progress!!!! 

You can tell from her face in these two pictures that she is not happy. 

She was a lot more guarded during the whole procedure too - she kept her arms really close to her chest and was uneasy about the whole thing.  I kept telling her they weren't staying on, but I don't think she was buying it!

We changed it up this time and did one purple cast and one pink cast!

And then they were cut back off so we could bi-valve them again.  I thought about maybe seeing if we could not bi-valve them, but then I thought back to last week and immediately dismissed that!  Plus with how upset Alex was, I knew it wasn't an option.
We had to leave the casts at Children's so they could be completely bi-valved so she's still in last weeks casts.  It's definitely an aggressive stretch this time so we will see how she does.  I hope and pray we have the same success and progress next week!!

Friday, July 19, 2013

More Cast Drama

This has not been an easy week for poor Alex.  Her casts were causing major pressure points and she has been so unhappy.  Last night I took her casts off and I freaked out a bit.

By this morning they looked much better, but she obviously has pressure points and she's been rubbing her knees trying to pull them up because she's got little blisters.

For the morning we only put her knee immobilizers on - which are cloth - it's not ideal for the stretch but we couldn't put the casts back on until Shannon saw her.  So we were back to Children's Hospital this afternoon.  She's got some more new padding inside the braces to try and ease the rubbing her knees are doing - in two days she actually wore down almost all of the padding that was trying to protect her knees.  I have to say - she's probably the strongest "weak" kid I know!  I wish she would use that fiesty attitude in other areas!  She has a bunch of fluid that has built up underneath both knee caps but hopefully that will resolve itself.

After we left Children's I HAD to run to the grocery store.  Alex also has an ace bandage on her arm due to an earlier incident - so between that and her two casts it was pretty comical to watch people reactions to her!  I would LOVE to know what people were thinking!

The GOOD news is that in 3 days, she has gained some range of motion - so I'm SO happy we heard that - I'm not sure I wouldn't have thrown in the towel if I heard she was still the same, or heaven forbid, worse. 

We talked about the casting next week and how that will go so I'm hoping and praying that this gets a little easier.  Alex was also a lot happier today so hopefully that trend will continue.

I am SO happy that today is Friday and that there is nothing on our agenda for tomorrow.  I am looking forward to a very, very lazy day!!

Wednesday, July 17, 2013


The last 24 hours have just plain sucked.  No other way to say it.  We got to Children's Hospital yesterday a little before our appointment at 2PM.  I have to say I was really impressed, they were prepped and ready to roll as soon as we got there.
This is how bent she is laying down.  Shannon had measured her last Tuesday and like I had said she was at a -21...in just the one week she had lost another 4 degrees and was at -25.  So if I had any doubt the casting needed to be done, that sealed it.
Alex HATES when people tag team her.  She despises if I'm trying to do her hair while Aaron is getting her shoes on.  We brought in the big guns to keep her happy while she was being held down - her Papa and her See N Say that Sings Old McDonald...neither ever get old! 

And in pretty much no time one leg was already done. 

And we were on to the second leg.

Everything is good when Papa is in the house.

Added a little bit of mole skin for some comfort and then we were on our way.


The whole process went WAY better than I imagined it would.  She fussed a few times, but for the most part she really did awesome - she didn't fight it at all.

When we got home the reclining wheel chair was delivered so we got her positioned and added a bunch of pillows to get her comfortable. 
MeMe taking her turn signing her casts. 

And she got lots more love from MeMe and Papa.
She was still in a great mood.  I had downloaded a bunch of new aps for her for her IPad and she was really enjoying it and was happy.

I should have known it was too good to be true.  She started getting a little fussy. 

And then it really went downhill fast.  She started crying and fussing at 5PM.  I tried consoling her and repositioning her, but nothing worked.

She was getting more and more uncomfortable so we took her upstairs to put her video on and get her ready for bed.  Only she never went to bed.  At ALL.  She literally cried and moaned from 5PM until 11:30AM this morning.  I was in her room all night with her trying to comfort her, position her, prop her, whatever I could think of.  She was having some stomach issues earlier so I tried everything in my bag of tricks to get that taken care of but it only seemed to make matters worse.  A heating pad on her stomach seemed to work for a few minutes, but only a few minutes.  By 4AM this morning I couldn't even think straight - I had no idea what else to do for her and she was breaking my heart.  Alex is not a crier - she's pretty much always happy - so given the fact that she had been crying for hours on end I knew she had to be in so much pain, but I was also really worrying that something was wrong with the casts - or that we pulled something transporting her.  I texted her pediatrician at 8AM to ask him about muscle relaxers.  He had given me his cell phone number almost 11 years ago and I have only ever used it once.  But I was desperate - and I needed to do something to help her.  I called the office a few hours later to follow up and the office told me that he was on vacation this week.  It wasn't until a few hours later I realized that he had actually called me and left me a voice mail, I never heard my phone and I was looking for a text message anyway.  I absolutely love our pediatrician - and he spent such a long time on the phone with me and then spent more time of his vacation on the phone with Alex's neurologist to see what the best thing for her would be given all of the seizure meds she's on.  He called me back and we got everything straight and I couldn't thank him enough for taking time out of his vacation to help. 
Before I had realized he had called me back I had already talked to Shannon and we had arranged to go back to Children's to have the casts bi-valved.  Basically her casts were cut off in two separate places.  The casts were then wrapped in mole skin and extra padding was added.  The casts are then put back on with heavy pieces of velcro so they can be removed if need be because we clearly couldn't keep going the way we were, and especially with her seizures, she needs her sleep.

I think we all breathed a sigh of relief when the casts came off.  Alex was making us really nervous, she was so exhausted her eyes kept rolling and they were so heavy - it looked like she was going to pass out.

And once we got in the car - it was the first time in almost 19 hours she wasn't crying - and she was actually happy to not have the casts on her legs.
I think we were home for a total of 5 minutes before she curled up in her bed and completely passed out.  She had a LOT of muscle spasms and was jerking a lot but she was so exhausted she kept falling right back to sleep.
She slept for about 4 1/2 hours and woke up happy.  I knew she still needed more sleep, but I wanted to get her up for a bit so she could eat.  When we got downstairs I stretched her legs and got the casts back on - and she really didn't mind them at all.
After she had fallen asleep I had to run a few errands, one of them being picking up the Valium the doctor prescribed.  Zach was starving so I took him to McDonald's for lunch.  When we were having lunch I asked him if he was okay with everything and we had a conversation about the sacrifices we all have to make sometimes and if was ever upset about having to sacrifice, it was ok to be mad about it but that I wanted him to know he didn't have to hide those feelings from me and it was ok if he was mad and wanted to talk about it.  I thanked him for being such a trooper and for being dragged around all the time for her appointments.  After lunch we had to run to Target.  He had seen a Spy Kit he wanted for his birthday - it happened to be on clearance so I picked it up for him and he was pretty excited.  He picked out something for Alex - and I think it made her pretty happy too.

Zach never got to sign her cast yesterday so he took the opportunity while she was awake.
And just as she was finishing her lunch she got a special visit from Miss Jennifer!

Jennifer brought me a beautiful bouquet of flowers and great balloons for Alex.
That was about all the excitement she could handle and it was time to head back to bed.  I gave her a dose of the Valium so that she could get a really great night sleep to catch up on what she missed.
As hard as the last day has been, it has really given me a great appreciation for how good we do have it.  The fact that Alex is happy 90% of the time is huge - because I've seen the alternative and it's not something I think I could handle!  Plus, I'm so blessed that she is a sleeper.  Sometimes I complain that she goes to bed so early because it can really inhibit things we want to do and often times we have to pass on opportunities.  But again, seeing the alternative, I will never complain again!  And a special thanks to Lynda and Angel for the wine you brought me - you ladies know me well :)

I've been up for 37 straight hours now so sorry if this is rambly!  Alex has been asleep for the last 3 hours now and she looks so comfortable.  I think it's going to be a much better night.  Zach and I are getting ready to watch a movie - I'm pretty sure I'm not going to make it past the opening credits!