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!

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!

Thursday, November 30, 2017

Summer post

So here it is the last day of November and I'm just now updating from the summer!   I have SO many things to blog about but I want to try and keep things chronological.  Zach and I were looking at old Christmas posts and videos a few days ago and I realized how much I love being able to look back at pictures and relive lots of memories as they happened...no so much the bad ones, but hey, gotta take the good with the bad!! 

Probably the best part of the summer was going home to Aaron's hometown, Rochester, NY, and spending time with all of our family.  I had not met my niece, Emma, who was born the November before and it had been quite some time since we saw our nephew Jack and our Godson, Matthew.  My father-in-law had come a week before to pick Zach up so he could spend extra time with the family and his cousins, who he loves to spend time with.  Unfortunately right after Zach left, Aaron and I came down with some terrible virus and felt completely horrible.  We both made several trips to the doctor and just prayed that Alex stayed healthy.  Two days before we were supposed to leave my father-in-law called to say that Zach had hit his head while they were at an amusement park and some of his behavior may have indicated a slight concussion so we got in the car the next day and headed to NY a few days early.  We were thrilled that my niece, Abigail was making the trip with us and that she could help out with Alex, especially since we still weren't feeling great.

There was one day where the whole entire family got to be together - and I think it was a first!

Family!!!   Unfortunately we took these pictures after Aunt Helen left (Alex was clearly not in a picture taking mood!!)


Zach and his cousin Emma
Our silly and lovable Godson, Matthew

While we were there this kid turned 13!  
No make-up on mom thanks to double pink eye!

We had multiple birthday celebrations for him while we were there!

We got to spend a fun night out with my brother-in-law, Ryan and my sister-in-law, Liz

And we had lots of fun family time in the pool!

Uncle and Nephew Monkey See, Monkey Do!

We had fun one afternoon watching the horse races...

Me and Zach with my handsome nephew, Jack!

And I got to spend time with one of my favorite Aunt doing one of my favorite things....playing slots!  

Aaron, Abby and I took the kids to Lake Ontario one afternoon.

I love this picture of Alex and her cousin Abby so much

We were having such great family time but half way through our visit Alex started coughing and it was obvious she was getting sick.  Because Alex tends to go down hill quick and we had none of her "sick" supplies with us we knew we had to cut the trip a few days short and head home.  While we were really disappointed, we were really grateful for all the family time we had.

And once we got home, things did not get any better.  After a week of three different doctor appointments, an urgent care visit and an ER visit, we wound up in the Pediatric Intensive Care Unit (PICU).

Alex's breathing and coughing were disturbing and then she started vomiting....a lot...and technically she is not supposed to be able to vomit because she has a nissin fundoplication.  Alex was choking and vomiting every 10 minutes and she was constantly having to be suctioned.  Before the PICU admission Aaron and I were spending the nights on her floor so she could be suctioned every few minutes.  I have to say it was one of her scarier illnesses.  

It was a really tough few weeks and once we were finally admitted into the PICU Alex was worn out.

Alex wasn't trusting anyone while we were there
Obviously not a great picture, but you can just see how horrible she feels.

We were in the PICU for an entire week and it wasn't until day 6 that we were able to get her out of bed.
And this kid gets the best brother award.  It's hard on everyone when Alex is in the hospital but I think it's hardest for him yet he handles it like the seasoned pro that he is. 

He goes with the flow though and helps us make the best of it.  He's an amazing brother and he was the only one she tolerated being that close to her. 

So much love
And on day 8, she was finally home, resting comfortably in her own bed.  The sign in the background says it all....loved beyond measure.  

On August 21st there was the full solar eclipse.  It was a really cool thing to witness!!

We hung out up at the pool to watch it for a bit and although it wasn't a complete total eclipse for us, it was really neat to see how dark it got and to watch!

At the end of August our good friends invited us down to their vacation house for a week to say good-bye to what was a really crappy month!

Alex LOVES the beach and she was so happy to be there!!

It was really nice for Aaron and I to have some time to relax.

And Zach had a blast hanging with his buddy Alex and boogie boarding and body surfing.

Zach, his buddy Alex and my sweet little friend Jane

The boys had a lot of fun fishing off the dock connected to the house.

They also had fun with the kayak's Aaron and Barry rented for them to go up and down the channel we were on. 

It was so nice to see Alex happy and relaxed and not have to run from appointment to appointment for a few days!

Thank you Barry and Sara for some R&R time and fun memories.  We are so very grateful to all of our friends who support us and invite us to do things despite being a train wreck half the time!!

And the trip ended on a pretty high note despite Alex's bad mood that day (pretty sure she was mad we were heading home!) and I got to visit with one of my dear friends who happened to be visiting family.  While the visit was short, I was so happy to see her!

Paul, Nolan, Madelyn, Aidan and Carolyn
Because Alex was so sick and lost a lot of weight (she was down to 63 pounds), the surgeon said there was no way her weight and lung issues (don't think I added that she tested positive for 5 significant respiratory viruses while in the hospital) could support a surgery of the magnitude she was supposed to have on September 12th and so the spinal fusion was rescheduled.  Very bittersweet for me, honestly.  I am completely dreading every single thing about this surgery so part of me was relieved it was cancelled.  On the other hand, it's becoming increasingly clearer that Alex is starting to be in pain all the time and it just needs to be done.  I'm looking at a few options but right now we are on the surgeon's book for March.

Not having the surgery meant this happy and sassy girl was able to start school on the first day of school!  We held Alex back again so this is her final year in middle school.  Boy was someone happy to see her favorite yellow bus coming down the street. 

I love this face so much!

And Zach also started his last year of middle school.  I can't believe they are both in the 8th grade together. 

Zach is now officially taller than me....what's that Kenny Chesney song?  Don't Blink?!?

Here's hoping a few more posts make it to the blog before 2018!