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.

Thursday, October 31, 2013

Happy Halloween!!

Happy Halloween!  Alex was one of the characters from Monster High and Zach started out  as a ninja!
I should back up a little bit.....a new development that I have not blogged about yet....we discovered during Alex's intensive physical therapy that she is now communicating and answering questions with her eyes!  If her answer to a question is yes, she will raise her eyebrows - and if the answer is no, she will do a hard blink.  How cool is that?!?  After multiple questions - Alex told us that she wanted to be a flying monkey from the Wizard of Oz for Halloween....LOL - we researched it (we were going to do a whole family theme around it) but the costume was really hideous so Alex then "said" she wanted to be Ariel from the Little Mermaid (she loves to watch Disney Princess videos).  Unfortunately, I couldn't find an Ariel princess costume in her size.  I've been hearing a lot about this Monster High so when I saw the costume I thought that would be a good alternative for Alex.  This morning before school I showed it to her and she kept blinking her eyes "NO" at me....and so I explained to her that I couldn't find an Ariel costume in her size and a lot of girls her age really like this Monster High show so it was a really cool costume for her (I even bought her a Monster High DVD so she could see what it was all about).  I will say that after we got her dressed we stood her in front of the full length mirror in my room and she was super happy!  She stayed out trick or treating in the neighborhood for longer than she ever has and was in such a good mood all night so I think she was ultimately happy with her costume.

This picture just cracks me up....

I had bought Aaron and I funny little Mohawk wigs - I didn't wear mine - but Aaron wore his (and Alex's mask) - much to Zach's embarrassment :)
I opted for a cat mask :)
...which Alex actually thought was quite funny and she kept trying to look at it and take it off me!
Our friends Noreen and John had us and some other friends over for great Halloween themed food and halfway through Zach decided to go home and make a costume change and decided to be a hunter....in my opinion this is NOT a costume because this is exactly what he looks like on any given weekend in the Fall!
  ....but he's happy and has a ton of candy so I suppose that's all that matters!   

I'll leave you with My ABSOLUTE favorite picture of Alex from the night :)

Hope "ya'll" had a Happy Halloween!!
WAIT!  I almost forgot!  Rudy's first Halloween picture!!

Tuesday, October 29, 2013

Star Student!

We got a letter home on Friday that Zach was nominated to be student of the week this week!  He was nominated by his teacher for demonstrating characteristics of good citizenship, hard work and a helpful attitude.
With that he got to be on the school's 'TV' for the morning announcements, he got a certificate, we got to go have lunch with him and he has a bulletin board display in the main hallway.  Not too shabby!!!  He is also student of the week in his classroom - which gives him another set of 'honors' - like being the line leader all week :)
Yesterday Aaron and I brought him lunch - and ok, apparently I was embarrassing him by taking pictures in front of his friends.  Sheesh!

Here is the bulletin board - you can totally tell by his face he's not thrilled with me!  There wasn't even anyone around :)

Way to go Zach - keep up the good work and stay focused - we are SO proud of you!!!

Yesterday he got his school pictures back too - he is changing and growing so much.  There's such a big difference in him from last year.  I've said it before though and I will say it again - no matter how big he gets, he's always going to be my little man, and, unfortunately, I can't promise I'll stop taking pictures of him or wanting to be around - even if I'm embarrassing him! That's part of my job, isn't it?!?

Friday, October 25, 2013

Therapy and Orthopedics

Alex finished her intensive PT two weeks ago and I am SO impressed with how she did.  She truly, truly blew me away with how much stamina she had and just how strong she is.  I don't think, let me rephrase that, I KNOW that I wouldn't be able to go to the gym and do a HARD CORE work out for three hours a day for three solid weeks.  No way.  But she did it - and she made me so proud.
I love this picture of her - first of all - she is sitting up tall and straight BY HERSELF.  Secondly there's just something about her face.  I'd give anything to be inside her head right there to know what she was thinking. 

A few blog posts back I mentioned that I was so afraid I would have Alex hanging by the ceiling because Shannon wanted us to use our cage at home to get Alex to stand like this....
Well I am HAPPY to report that this is what she looks like when I'm doing therapy at home with her!
And if you compare the two pictures you will actually see that she's requiring less support from bungees and straps!  Go Beans!!
Here's the not so great news.  Unfortunately, Alex is still standing at 55 degree crouch.  There was some questions about her hips and if she had an upslip or not because one leg is longer than the other.  Alex has always leaned to her right side and her scoliosis was always on her right - she's now changed it up and leaning and favoring her left side.  We saw her orthopedic doctor and he says her hips look ok but he wants to do surgery on her legs.  He wants to lengthen her hamstrings and do a posterior capsulotomy (a procedure done behind the knee caps).  Her doctor said we can do therapy and brace all we want, but Alex's issues are on the inside and unless there's surgical intervention it's not going to get any better.  I have lots of reservations about the surgery based on multiple conversations and research I've done - not to mention it's a surgery and she'll have to go under anesthesia and 'be cut'.  It's a hospital stay, it's casts for 4-6 weeks after surgery (who remembers all the cast drama from the summer?) It could actually had adverse effects and make her legs weaker, I could go on an on.  So, we are going to Charlottesville in two weeks for a second opinion.  I've heard tons about this doctor and he's highly recommended - he's done a LOT of research on Alex's problem and he's not a doctor who's quick to jump to the OR.  SO.....please say a prayer that this appointment goes well and that whatever is decided will really be in Alex's best interest.  In the meantime, we're going to keep on trucking at home with her therapy and try to keep getting her stronger and stronger!

Wednesday, October 16, 2013


We haven't had any nursing since the beginning of August and honestly, I have to say I have loved it.  I loved not having anyone in the house, I loved just being a family, just the 4 of us. I loved not having any outside drama.  I have to say that I also loved having all that time with Alex - just me and her, one on one.  I can honestly say that I feel like she and I have bonded on a whole new level and I feel such a new closeness with her.  I have blogged numerous times about the struggles and frustrations with nursing so I wont get into that again but it definitely changes your home dynamics.   Now that Alex is back in school she needs to have a nurse.  She needs someone to facilitate every aspect of her life whether it is positioning her, medicating her, changing her, feeding her, entertaining her, whatever it is she needs.  I can't be with her 24/7 so I have to depend and trust that someone can competently do that when I can't be with her.  Someone who will love her with all her silly quirks and loud happy squeals, someone who wants to be her 'buddy'.   We have met some pretty amazing people because of Alex and it's so hard to say good-bye when the time comes, for whatever the reason.  And some separations are amicable while others are not and that in itself can be very emotional and draining.  Nursing is supposed to make our lives easier, but sometimes it does just the opposite.  And I just have to wonder what Alex thinks when people that have been in her life caring for her just disappear one day.   From the time Alex was 3 until she was 9 she had the same nurse, Ms. Audretta, and we were so sad to see her leave just about 3 years ago (http://ourlifewithalex.blogspot.com/2010/11/big-loss.html).  We have always kept in touch and I'm so happy to report that she's come back to work some for us.  She isn't Alex's full time nurse, but she's working a set schedule for us and we were all SO happy to see her again!  Zach made this sign for her and hung it up before she got to the house.... 

...and Alex kept looking at her as if to say "well it is about time woman, where have you been?!?"

....and they picked up on some of their old routines like no time had passed at all!

Alex's new full time nurse, Tammy, has jumped right in and is forming a really nice bond with Alex.  I like to think Alex is a really good  judge of character and she loves to stare at Tammy and and is constantly trying to hold her hand.  I love this picture of them celebrating Alex's last day of intensive physical thearpy....I think both of their faces says it all! : )

Here's to hoping we have a great, long lasting relationship that just continues to grow and flourish!

Friday, October 11, 2013

Happy Birthday Rudy!

If there's one thing Alex has taught me it's to celebrate the little things in life.  There's so much hate and bad things in the world - the news is god awful depressing and I want my kids to see that even the smallest things can be celebrated and enjoyed.  Life is what you make of it!
So....yesterday was Rootie Tootie's first birthday!!  Major cause for celebration! :)

When Zach got home from school he hung up a bunch of birthday decorations and we had a little birthday party.

Alex heard the word cupcake and that's all she cared about!

So we lit a candle in a cupcake and sang Happy Birthday to Rudy!

He had a taste of his cupcake...

And then got to eat his real treat - A Frosty Paw! (Ice cream made just for dogs - what will they think of next?!?)

After his treat Zach had tied up his new bone with a bow and gave him his present :)
Rudy's been a lot of work since his arrival - he's eaten more foreign objects than I care to count and he definitely keeps us on our toes, but at the end of the day we love him like crazy and love the extra chaos (sometimes!) he brings to our crazy life. 

Happy first birthday Rudy!

Tuesday, October 8, 2013

Meds and Equipment

Yesterday was our final day of Keppra - whoo hoo!  So we are officially down to two seizure medications!  We are still on the Valproic Acid three times a day and the Zonegran twice a day.  We have upped her morning Zonegran dose to 100 milligrams to compensate for taking her off the Keppra.  KNOCK ON WOOD Alex hasn't had a seizure since the beginning of August!  I have my own theory on why that is so I just pray we continue on this trend!  Last month we also started her back on the scopolamine patch for her drool.  One of the reasons I totally love my moms support group is the knowledge we all bring to the table that comes from first hand experience.  We were talking about drool one night at our group (all of our discussions tend to revolve around bodily functions - it's one of the perks of living this glamorous lifestyle!) Anyway - I mentioned that we had tried the scopolamine in the past but it wasn't good for Alex - her pupils dilated so much that you couldn't even tell what color eyes she had and she seemed to be dizzy - it really freaked me out so I stopped it immediately.  My friend Cat said her son had the same reaction - but it's because the patch is touched and the medication gets on your hands and if you then touch your eye, that's the reaction you'll get.  So we tried it again, this time covering the patch with a band aid so she can't get the medicine on her hands and we haven't had that problem again!  My mom's group rocks :)   Two recent pictures of her...and looks what's missing - her bandanna!

I wish I could say we don't need them at all anymore, but we do, it is getting better though! 
On to equipment.  Alex had such a big growth spurt that she needs all new equipment.  We've had evaluations and we are trying to get everything in place to replace all the pieces she needs.  Yesterday the stair lift that we have in the house to get her up to the second floor completely stopped working.  Luckily that is already in the works for a replacement.  Bathing Alex has always been a challenge because of her love for water and how excited she gets.  Her bath chair just isn't working for us anymore with her height so that's one piece.  We walked in for her evaluation and my first thought was "Holy bath chair Bath Man!"

Her Wombat chair, which is the primary chair we use in the house, needs to be upgraded too.
I randomly posted a picture of Alex on Facebook and Shannon cannot tell you for the life of her what the post was about because she was too busy studying the picture of Alex in the chair realizing it was way off and she needed a new chair. As if I needed another reason to love Shannon! 
We still need to look at her stander and her bike.
I've posted a few times about Alex's walker, which is called a Kid Walk and about how great she walks in it.  There is NO other walker that she walks as good in.  This is the only walker out of all the walkers we have tried over the years that she actually walks in and that is forward facing.  (Here's a clip of her from back in 2010 when we were first trialing it...Kid Walk)  The problem is that Alex has literally grown out of it.  They don't make another size up.  Her weight differential now has broken the bracket that holds her in and she also tips the walker forward.  I was so upset to learn that they didn't make a bigger size.  She finally has the motor mapping down and then she outgrows it.  That's just cruel!  Shannon contacted the rep for the walker who came out to do an evaluation on Alex -he ordered the last one for her so he has seen Alex in the walker.  He took videos of Alex walking in the walker and sent them back to the company that makes the walker telling them that this is the ONLY walker that has ever worked for her and was there any way we could make it work.  Well guess what?!?  The company is going to CUSTOM MAKE a walker that will accommodate her!!!  Whoo hooo!!!  Did I mention that it will cost $8,000 to make this custom walker?  I actually got a phone call from the insurance company, not a letter in the mail, a personal phone call, from a nurse at the insurance company, telling me they were denying it.  You know you must be pretty special when you actually get a phone call.  The equipment company said they also got a denial within 24 hours - and that's probably the fastest denial they have ever received.  I realize that $8,000 is a lot of money - heck, I don't think my first car cost that much, however, when you have literally tried every other option out there you just sometimes have to wonder who is making the denial decisions and if it's based solely on cost.  I have two ideas for a reality TV show and one of them is that when an insurance company denies someone a piece of equipment for their special needs child that the 'denier' must come and live at your home for 48 hours.  IF they can easily survive those 48 hours without the piece of equipment or surgery, or whatever else it is they are denying, fine the denial sticks, BUT if they can't, or if they realize what a HUGE impact it will have on someone's life, the denial gets over turned.  Don't you think that would make for good TV?
I guess I'll just be thankful that Alex is healthy and growing!

Friday, October 4, 2013

My Inspiration

It's a pretty humbling thing when your 11 year old inspires you and makes you stand in awe of her.  I swear sometimes I think my love for her could never grow any deeper and then I watch her do things and my heart feels like it could just burst. 
Alex has been in intensive therapy for the past week and a half.  Three SOLID hours of physical therapy.  She works and works and works.  It really hit me this week just how hard she has to work to do the simplest thing, like keep her head up.  I really think that the therapy place should have field trips and when typical kids think they have it so "rough", or life isn't "fair" because they couldn't get the latest technology craze or coolest clothes or whatever else is making their life "so tough" that they walk through this building and see what some kids have to go through.  And HOW they do it.  These kids work so damn hard to do the very things we take for granted every single day, and 90% of the time, even though it's hard and they are struggling, they are doing it with a smile on their face.
Alex starts her day riding a bike....   
She then does some cage exercises with the weights and pulleys and then does some independent standing...

Trying to teach her how to clap :)

On to some tall kneeling...

Then it's time to hit the treadmill....

All with a smile on her face...

Here is a quick video of her on the treadmill trying to rock out her stepping....
After walking on the treadmill she goes into an actual walker and walks a few laps - her legs this past week have been shaking like crazy when it's time to do the walking - her muscles are so worn out.
Yesterday at the end of her session she looked EXHAUSTED.  Shannon told her she had to do 10 sit ups and she literally looked at the both of us and just busted out crying.  I know she was telling us she had given all she could and she didn't have it in her to do anymore.  Shannon and I gave her some words of encouragement and got her to stop crying.....
...and then she rocked the sit ups out like the super star that she is.
Last night I put her in my jetted tub and let her soak her muscles with the jets on - of course she loved that.  This morning when I went in her room she couldn't even stretch out her muscles were so sore - and her legs were still shaking like crazy.  But guess where she is as I write this?  Right back at therapy, again, being the super star that she is and making my heart just a little bit bigger.