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, February 29, 2024

We're Still Here!

Well, it's only been about 4.5 years since I've updated my blog.  👀  Someone recently asked if I was still providing updates via my blog and when the answer was no, I got a pang of nostalgia. Or was it guilt?!?  When I posted my last update in 2019, not realizing it was my last post for a few years, I was feeling a little overwhelmed with life.  Juggling working, the kids, extra cirricular activities, therapies, doctor appointments, all of it.  Every time I thought about blogging I got stresssed out about it.  Writing had always been my therapy but then it turned into a something I felt like I had to do and the more I stressed out about it I kept saying tomorrow, I'll do it tomorrow.  And then tomorrow turned into a week, which turned into a month, which turned into years. I've thought about writing several posts over the years but never did. I have definitely missed writing, especially when it comes to historic data I need for Alex. Over the course of the years I've relied on my blog to keep my memory straight on all she's endured and that's definitely been a missing link. I've also always loved looking back on Zach's childhood and family memories.  So....here we go.  Again.

A LOT has obviously transpired over the years.  Covid, surgeries, therapies, illnesses, milestones, set backs, etc.  There's no way to go back and recreate all of that for a post so I'll just start with what's happened most recently.  Alex is 22.  Gosh it seems unreal to see that in writing.  For the most part, she's doing well!


Tuesday, October 22, 2019

An Update, Finally!

I seriously cannot believe it has been almost a year and a half since I have blogged.   Obviously a LOT has gone on, a LOT has changed and some has stayed the same.

In brief summary, Alex and Zach are both sophomores in High School this year.  


Zach is 6 foot and taller than both Aaron and I.  Alex is finally gaining weight and reached 80 pounds this month!

A few weeks ago Aaron and I celebrated our 20 year wedding anniversary!


We've been through a lot - we've struggled, we've grown, we definitely have been through good times and bad and sickness and health.  And I can honestly say we are better and stronger than we have ever been.  I'm proud of us and all that we've endured.  I'm proud of how far we've come and I am so incredibly thankful for the man that he is and the amazing father he is. 


Last month was the 2nd Annual We Heart Harlie and Friends Gala.  We Heart Harlie Friends is a foundation whose mission is to offset the financial strain of medically fragile children.  Their mission is to also reduce the worry, limits and fear and to increase hope, access and joy.   We have been blessed to be a part of the foundation for the last few years and this year I was honored to be asked to speak at the Gala and share our story.


I have known Harlie (the whole reason the foundation was started) and her Mom, Christy for over 10 years and I can honestly say she is a such an incredible mom, warrior and friend.  Harlie's story is unbelievable, Christy is just as unbelievable; and I really do feel lucky to call her my friend.  We had a great impromptu lunch on Friday and I brought up that I wondered if we would have been friends if our situation was different.  Our daughter's had a wonderful speech therapist that brought us together, and while we do have similar circles that we run in,  I'm not quite sure we would have had the opportunity to connect the way we have if it were not for our circumstances.  Christy and I have such similar personalities, philosophies on life, marriage, senses of humor, values, and overall positive attitudes...even though there are days we want to have anything but!  Whatever, or however, we were lucky enough to become friends, I'm grateful.


If you missed our Gala this year, all I can say is you missed a really good time and this picture probably sums up all of the excitement and fun we had!  We raised over $130,000 and it was another wonderful example of what an incredible community we have that support, love and accept us!



I'm so thankful for my family that supported us and the foundation, and looked good doing it!








Today is the 4 year anniversary of receiving Alex's diagnosis of Grin2B.  I really can't think of a more special day to share our message and say thank you to the We Heart Harlie and Friends Foundation for giving me that honor and for supporting and loving us the last few years: 


If you would like to know more about the Foundation, how you can help, or sign up for our 2nd annual Thanksgiving Day Turkey Trot, please click here:  We Heart Harlie and Friends.


Thursday, June 21, 2018

8th Grade Graduation

Last Thursday was an extremely emotional day....both Alex and Zach graduated from 8th grade.  

And this happened....


While it definitely did not go the way I intended, or the way she did when wen we practiced, I truly cannot articulate my emotions seeing everyone on their feet clapping for my sweet girl. This was the very first time she has ever walked publicly outside of practicing at therapy so the fact that she got a standing ovation by almost 600 people was incredible.  I have to remind myself that we were told that her recovery from her spinal fusion wouldn't be complete until August and that she wouldn't even return to finish the school year.  I have to remind myself that the fact that she was there and SHE walked, no matter how she did it, is HUGE!  She works so hard every single day for the simplest things and this just culminated so may emotions and I am SO proud of both of my Cougars!

In Zach's case, I truly feel like I blinked and Middle School was over.    Zach just asked my why I make a big deal of taking first and last day school pictures....Well, let's just say, Exhibit A...


First day of 8th Grade
Last day of 8th grade
I couldn't help  but go back and compare his first day of 6th grade to this week as well!

First day of 6th grade!
Last day of 8th grade!
At almost 5'10, to say he's grown a lot is an understatement!  I'm super proud of his Middle School career, and while he has driven me quite crazy throughout, he really is a great kid and we're both very excited for the next chapter of his life.  

And while we're at it, I should probably compare Alex'x first day of 6th grade and last day of 8th grade as well:



Last day of 8th grade

And her first day of 8th grade:


And her last...Graduation day!
Alex has been in Middle School for 4 years and her teacher and some of the staff have become like family.  It was the most emotional week and my very last walk out of the school wasn't a pretty one.  Maybeline couldn't have made enough water proof mascara to get me through.  I have had such a special relationship with her teacher the last 4 years and it's so hard for me to imagine what next year will be like. 

Ms. Hadji has probably been the best thing that has happened to us in the last four years.  I cannot put into words how much this woman means to me.  Ms. Hadji is so exceptional and her love and belief in Alex, and all of her students, is truly something special to witness and be a part of.  I don't know how we will manage without her next year but I do know that we are moving on better people because of her.  Alex has THRIVED the last four years and we truly feel blessed to have been a part of her extraordinary classroom. 



This picture encapsulates their relationship....no words needed. 

If there is ONE thing Alex loves it is the school bus.  I often joke that if the neighborhood is not awake when Alex's bus arrives that they will definitely be awake be when she leaves!   I also joke if Alex ever needs a limousine ride that I will contact Central Office to coordinate her to arrive anywhere in her favorite style!

Her very first Middle School bus ride!
It should be noted that Alex developed a very special relationship with Mr. Eric, her afternoon aide on her bus.  Alex could make Mr. Eric blush better than no other could!  When Mr. Eric got married this year Alex gave him a 2 week silent treatment but then decided she would take him any way she could have him.  Oh, Mr, Eric, you have no idea how much we will miss you!

Her very last Middle School bus ride!

As much as it pains me, that's a wrap bus #333!



....and speaking of a wrap....some actual graduation pics!

MeMe and Papa with Alex!
MeMe and Papa with Zach
SO proud of my boy!


Dad had a crazy work day and we didn't get any pictures all together during the ceremony but we all went out afterwards to celebrate - CONGRATULATIONS CLASS OF 2018!!

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!

Wednesday, March 14, 2018

Spinal Fusion

After a few failed scheduled attempts for Alex's spinal fusion, it finally happened on February 20th.  I was a nervous wreck leading up to the surgery but she was becoming so incredibly uncomfortable in most positions and she was living on Motrin so it was beyond clear we couldn't put it off any longer even if we wanted to.

We had to be at the hospital at 6am and from the time we woke her up at 4am she was incredibly happy.  I had been talking to Alex for weeks about the surgery and kept asking her if she was ready to have her back feel better and I always got the eyebrows up, her way of saying yes. 

She was super happy and very cooperative for her pre-op nurse.


They blew up an air like mattress to put on top of her to control her temperature and she thought it was the funniest thing.




My parents were able to come in with us and wait in the pre-op room until it was time for her to go. Usually Papa gets all the loving so it was nice that Me-Me got some of the attention for a change :) 



One last hug from Daddy and it was time to go.

I tried really hard to keep it together, but when the surgeon and anesthesiologist came in to talk about the procedure and what the possible complications could be I couldn't hold in my tears anymore.  We've been anticipating this for years, but the reality of it all was completely overwhelming for me and all of the built up emotions just started to flow.   The nurse that was going to be in the OR with her the whole time gave me a hug and told me that she was a mom and for the next 8-10 hours Alex was going to be her daughter and she would take care of her just like she was her own.  In some strange way that was really comforting. 

When it was time to go she was still as happy as she could be and it looked like she was waving bye to us.  

The total surgery time was 8 hours.  They called me every hour to let me know how she was doing and that was incredibly helpful.

While we were waiting for them to get her settled into her room in the PICU we could hear her crying from the waiting area.  We weren't allowed in yet and listening to her crying and not being able to comfort her was hard.

They were giving her enough narcotics to put down a horse and she wasn't able to get comfortable.  After a few hours they seemed to have found the right cocktail and she slept for a few hours. 




The first two days were a little bit of a juggling act trying to keep her comfortable and keep her stats OK at the same time. The drugs were making her blood pressure too low but the pain was making her heart rate too high.  For two days her labs came back low and she needed repletion's of calcium, potassium, magnesium and fostfate.  

On the 2nd day physical therapy came to try and get her upright but they only got the bed to 25 degrees, 35 degrees was too much and her blood pressure began to drop so they didn't try to go any further.   

On day 3 they were able to sit her up on the edge of her bed and then transferred her to her wheel chair.  Her fusion was from the top of her thoracic vertebrae (T2) to her fifth lumbar spine vertebrae (L5) so watching them move her had me a nervous wreck again. 

 

Once she was in her chair she was high as a kite and pretty much out of it - but she was sitting in her wheel chair, which usually means we are going somewhere, so she started waving bye-bye!  




For the first few days she stayed pretty well medicated but we were able to get her up in her chair for an hour each day.  Aaron and I had to do all the moving from day 3 on so we would be comfortable transferring her when we got home.  If I didn't think we were a good team before all of this I have no doubt now!


I think it was day 4 that we moved from PICU to the step-down unit.  Thank goodness for her physical therapist and she made sure it was a private room!


After a few days we were able to get her up for longer and we were able to take her out to the playground on the pediatric floor.  She wasn't thrilled to be up and outside, but it was a nice day and it was nice to be outside and getting some fresh air.  


Clearly she was not amused with her dad :) 


I had posted this picture on Facebook  after we walked around the floor for a while and said something like you know you're the parent of a medically fragile child when you walk around the unit and say..."and you've been in that room, and you've been in that room, and you've been in that room, and you've been...."  True story.  


When this is your bed for a week, you need to find the humor where you can ;) 


After a week - we finally got a smile!  It didn't last long, but it was much needed!


On the day of our discharge I was watching her sleep and it occurred to me - wow, her back looks so straight!


Unfortunately Alex's bladder hadn't worked since the surgery and we had to come home from the hospital with a Foley bag.  She had 3 Foley's while she was there and 15 in and out catheters and she had a ton of sediment or "debris" every time and was not able to urinate on her own.  


After we were home for a few days, sparing all of the details, we were having a lot of problems with her Foley and we were back and forth to the urologist.  On one of those visits I had my phone out checking a message when I looked up and saw Alex smiling at Aaron who was having a conversation with her about  peeing :)   Sometimes I capture pictures of Aaron with Alex or Zach that literally make me fall in love with him all over again....case in point....


On a subsequent visit we had another ultrasound and it showed some changes in her kidneys and at this point we think her urology problems are stemming from her kidneys, but we have another follow-up and ultrasound in a few weeks to confirm some things.  The GREAT news is that the Foley is out and she's peeing on her own!  For a brief point in time we were fearful this could be a permanent thing so we're obviously over the moon for her progress!


For the last 3+ weeks Alex has had the same bandage on since she came out of the OR.  The bandage is obviously long and we've been anxiously waiting to see how she's healing.  She's had some positioning restrictions and Aaron and I have been having to do a double lift with her.  I keep saying it's been like having a newborn in the house between waking up for medications or position changes every 3 hours...it's been pretty tiring.  Additionally, her seizures were at bay with all of the medications that she was on but now that we are home and weaning that has changed.  Two nights ago she had eight seizures during the night and got zero sleep.  Yesterday she was trying to nap and every time she would finally fall asleep she would have a seizure.   Because she has grand mal seizures we were worried about how convulsing would affect her surgical site.     


Today was the big day - we got the bandages off.  I will say right off the bat that I think I'm really good at a lot of things when it comes to taking care of Alex, but wound care....that's all Aaron - NOT my strong suit....AT A.L.L. so I was pretty anxious about how things were going to look....overall....it wasn't as bad as I thought....



I will say, I think my girl is really one tough cookie. 

Back in December Alex's curve was at 60 degrees - today, she was at 22 degrees!!  Surgery was a success!!




Next week we are back to physical therapy, I can't wait to see what's in store for her now!