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, March 29, 2018

5 Weeks Later....

Today was a good day.  Like a really good day.  5 weeks may not seem very long to you but when your "usual normal" is anything but, when you are completely sleep deprived, when you have no clue what each day is going to bring, 5 weeks can feel like 5 years. 

Last week Alex started having back to back to back seizures.  It was to the point she was having 20 to 30 seizures a day.  They weren't long, but they were consistent and every time she got horizontal they were relentless and sleep has been non existent for her.  Her neurologist put her on emergency meds for the weekend to try and break the cycle and by Tuesday they finally calmed down but by that time she had close to 100 seizures.   We aren't back to baseline yet and still having episodes but they are no where near as bad.  Between the surgery, seizures, lack of sleep and the different medications she's been on, she has been in a complete zombie state and just not the same girl.  She hasn't eaten anything by mouth since the surgery and has been g-tube fed for the last 5 weeks, not ideal for healing or for her weight issues.

There is a watch that was just recently FDA approved for seizures that we just got that will capture seizures and send alerts to our phones both in the form of a text and a phone call (which is especially helpful at night when we are all asleep and her seizures tend to be the worst).  Today we got it all paired up with our phones and trialed it out.   Tonight is the first night she's wearing it and I'm anxious to see how it works. 
Chilling in bed with her new watch!

I have to give a shout out to one of Aaron's co-workers, Carrie.  A few years back she made Alex the pink and purple pillowcase pictured above....almost every picture I've posted of Alex in bed or laying down the last few years has that pillow in it because I just love it and every time I do her laundry I make sure I wash it and put it right back on.  The other day Aaron came home from work and she had sent him another one for Alex, the one above to the left with her name (which is A.W.E.S.O.M.E. because I always keep 2 pillows on her bed!) and she also made a monogrammed one for Zach.

SO thoughtful and sweet - I LOVE them, thank you Carrie!! 

Back to the watch...it also collects all the seizure data into an app and compiles it into a seizure report that can be downloaded and/or printed so that I can share it with her neurologist.  After the week we've had I'm super excited about it.  It will also record and monitor her sleep patterns which is going to be super helpful as well.  


Alex started back at therapy this week.   Tuesday was her first day.  She still is not allowed to twist, side bend or rotate.  Tuesday Shannon just did a gentle massage along her surgical site to manipulate the skin so that it doesn't get too tight.  Overall Alex tolerated it really well.  Her sacrum bone is still ridiculously pronounced and causing pain when she sits for too long so that was an area we tried to work on as well.


She did some leg work in the cage and was not happy about it...

....and she did some sitting and reaching too but you can see in her face she was still spacey and just not with it.  


Today was a whole different ballgame - my girl is back!!  She was her happy, smiley, lovable self and I cannot tell you how HAPPY that made me!



She worked her legs on the total gym and while she was guarded and scared at first she totally rocked it!


Since the surgery Alex has been really tight in her neck and  keeping it rotated it to the right.  Shannon totally put it in perspective today explaining that her scoliosis was an s curve and Alex basically has compensated to keep her head in the middle of the curve, now that she's much straighter, her head and neck need to come to a new mid-line.  (I didn't do a great job of explaining that, Shannon explained it so much better!)  So crazy the things I don't think about and just automatically take for granted.

Clearly she was not distressed by the neck massage and rotations!


We've been trying some standing assists at home to get her to weight bear and she gets really excited when she stands up.  When we were getting ready for therapy today I asked her if she wanted to do some standing and maybe even take some steps and she raised her eyebrows several times to say yes.  She was SO excited to get in her walker today and take some steps - and she COMPLETELY ROCKED IT!!!


It was a beautiful 81 degrees here today and we really enjoyed outside time in the backyard.  It was so nice to sit with her and see her so happy and not so spacey.


Good gravy I have missed that smile!


Today was such a good day.  She slept last night for the first time in weeks, she ate not one but TWO meals by mouth, she had a minimal amount of seizures, she rocked her physical therapy session, she was excited to be out in the car, she gave the neighbors a little bit of a heart attack screaming on the top of her lungs when we went out for a walk and the medication fog has seemed to have lifted.  

I'm so thankful today was such a good day and that my girl seems to finally be back to herself and happy again, it did wonders for my soul.  Here's to an even better day tomorrow!

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