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 23, 2017

Surgeries, Hospitalizations and Appointments (Oh, My!)

The last few months, and the next few months, have and will be filled with more than my norm of hospitalizations, surgeries and appointments.

Back in September Aaron wound up in the ER with a swollen leg and a rash.   They really had no clue what was going on (story of our lives) other than possibly some sort of blood infection but sent him on to a Rheumatologist to rule out any type of auto immune disorder.  He was tested for sclaraderma, lupus, lyme disease and a few others that I can't seem to recall at the moment because thankfully, they were all negative.  

Aaron also had some pretty intense varicose veins in that same leg so my mom had suggested that he go see a surgeon that she had used.  Turned out he had an issue with the blood flow return in his leg so he had a procedure done the week of Thanksgiving.

This was at his post-op appointment - clearly he wasn't the most cooperative patient! 
Moving on to December - the week before Christmas my dad wasn't feeling so great.  My mom didn't like the way he was looking at church that Sunday so they left church and went to the ER and my dad was then transported to the hospital with a pneumonia and low oxygen levels. He was also diagnosed with advanced emphysema and they found a nodule on his lung.  I'm THRILLED to report that after a few days in the hospital and some recovery at home that he almost immediately came off the oxygen and a recent MRI follow-up showed there's no further concern about the nodule at this point.  He'll go for routine follow-ups but he is healthy and happily back to fishing every morning!

For the record - this was complete role reversal for Alex - and she did not like it.  Aaron had to take her home shortly after she arrived for her visit because she got extremely agitated seeing my dad like that.  Later that night when I got home from the hospital I was giving Aaron an update as we were in Alex's room getting her ready for bed.  I had commented that I was a little concerned with all of the meds that he was on that when I kissed his head when I was leaving that he was sweating really bad and I didn't like the fact that he was running a fever.  As soon as the words came out of my mouth Alex started crying -  and it wasn't a hurt or a mad cry, it was the most emotional cry we had ever heard come out of her.  She was sad for her Papa. She knows and understands so much more than even we give her credit for.  

Moving on to Alex.  I'm thrilled (knock on wood) to say that's she's remained relatively healthy throughout the winter!!  WHOOO HOOO!

In January Alex had her cecostomy tube changed out.  We went from a chait tube to a mini-button. For one, to have the chait tube replaced every year, it requires Alex to go under general anesthesia, secondly, if the tube accidentally comes out, it's not something we can put back in at home and it requires a hospital visit.  If you know anything at all about feeding tubes, you know that there are Mick-ey and there are Mini tubes.  The new tube they were putting in was a Mini button and I was assured it would be easy peasy lemon squeezy and we would be in and out - no big deal.  Should have known right then it wouldn't have been that easy.  The chait tube is a lot smaller and as a result, the channel that the Mini needed to fit into was too small so they couldn't get the tube in.  They had to put a foley catheter in and we had to wait for her surgeon to come in and stretch the channel with these medal stick looking things.  All I have to say is it's a REALLY GOOD thing Aaron was there for this appointment because I may be good at a lot of things - dealing with this cecostomy is NOT one of my strong suits.  I'll just step back and take pictures with my nervous energy.  That I'm good at!

And sometimes you just capture a picture that may or may not make you fall in love with your husband all over again for the thousandth time.  When there was nothing he could do he got out of the way but still hugged her legs to let her know he was right there.  

And sometimes it's really good to have your best bud Elmo with you because between him and Dad with all she had to deal with that morning she was beyond the biggest trooper.  She really is my hero. 

We had noticed that light had really been bothering Alex's eyes.  She would not leave her glasses on for anything and when we tried to get her to use her eye gaze communication device she would shut her eyes really tight and turn her head as far away as possible.   In February I had made an appointment for Alex to see an eye specialist in Fredericksburg, which is about 50 minutes away.  I woke up not feeling so great that morning so while I was upstairs getting ready Aaron had called in and taken the day off so he could take us.  It's the little things that like that me so thankful that I have him on this journey with me.

Turns out that the special prisms that we had made for Alex's glasses last year were put in  vertically instead of horizontally so every time Alex's glasses were on everything was extremely fuzzy and she was seeing double of everything.  The doctor put some lenses over our eyes and told us this is how she has been seeing things.  I just wanted to cry.  Seriously just cry.  How in the heck am I supposed to be able to check things like that?  I take her to specialists for a reason.  There's no way we would ever know the prisms weren't put in correctly....and we've been forcing her to wear them for A YEAR.  The doctor also didn't even have to dilate her eyes to see behind her eyes because her pupils were so large and dilated on their own - apparently that's a side effect of two of the seizure meds she is on so that explains why she's been so light sensitive.  It's things like that that break my heart sometimes that she can't speak.  

On the fun side, we started music therapy and our music therapist, Kim, comes to the house and Alex LOVES it!!!!  Shes working on choice making, reaching and her fine motor skills. 

Last month we took Alex back up to Shriner's Hospital in Philadelphia.  Because we had a relatively early start we drove up the night before and stayed in a hotel.
I think Alex loved having this big bed all to herself.  She was stretched out like it was her job :)

Right next to her bed was a window with a beautiful view of the Benjamin Franklin Bridge.  The bridge frequently changed colors and a train ran on the lower level of the bridge and Alex loved looking at it.

It was nice to have a room with a pretty view!

The next day was a long day.  We got to the hospital at 9:00 for a 9:15 x-ray.  We had 3 doctors to see and our first appointment was 9:30, then 10:00, then 10:30.  We didn't see our first doctor until 11:30. Alex was a lot more patient than I was.

At the end of the day, the neurosurgeon said her curve increased a few more degrees and he thinks it's time to start talking about her having the spinal fusion surgery.  I can look at her back and see how twisted she gets so it wasn't something we weren't prepared to hear, but it sill brought tears to my eyes.

The x-ray on the left was from July and the one on the right was last month

Alex's super amazing, always on the ball, therapist Shannon looked at the x-rays and realized that one was taken laying down and one sitting, which could account for the increase - it wasn't apple to apples.  So the plan right now is to put Alex through another intensive physical therapy session (which I haven't posted about but she finished one up in January and I need to post about it because she did some pretty exciting things!)  in May before we go back to Shriner's in June.  The neurosurgeon wants another x-ray in June to see if there's more of a progression and if there is he will want to schedule the surgery.  Just this week Alex had a physical therapy session and her back was a mess.  Her sacrum bone keeps locking up and it took 30 minutes of stretching and massaging to try and get her straight again.  Sometimes I feel like I'm being selfish by prolonging the surgery because I know she's uncomfortable.  At the same time, if we can keep doing therapy and getting her stronger and I can avoid putting her through it I would much rather go that route.  And if we do the surgery there are so many other things to consider - do we do the surgery here or in Philly?  I've already told myself it has to be in Philly.  Just trying to think about the logistical aspects of that makes my stomach hurt.  So for now, we just keep doing all of her physical therapy and see what happens in June.  If the surgery needs to happen, we're looking at August/September.

On to this sweet boy.  Zach has  always wanted glasses and braces (I did too as a kid, is that weird?!?)  2017 was his year!

Apparently big frames are "IN" this year.  I love this kid more than life but I swear he looks like Simon from the Chipmunks!!

You can get multiple bands on your braces and he opted for black and teal for his first round!

I posted two years ago about problems Zach was having with his feet (2015 post).  He's been wearing special braces in his shoes since then but this year his feet were really bad.  Like asking to be pulled out of his basketball games (which he eats, sleeps and breathes for) because his foot was hurting so bad.   He had practice once a week and two games every weekend and after each his foot was really swollen and he'd be on the couch with ice packs.  I took him back to the foot doctor and he said that back in 2015 they had only x-rayed his right foot so he wanted to get some films on the left foot.

Long story short, Zach's foot is starting to collapse in on itself.

You can see how incredibly flat footed he is - but on his left foot (right looking at the picture!) you can see where his bone is actually starting to touch the floor.

One of the procedures he's having is called a calcanel osteotomy.  Basically they are going to remove the heel from where it is now and re-position it with screws and plates.  He also has short tendons on the top of his foot which is contributing so he also needs to have a titanium wedge put in on the top of his foot.  He also has extra bones and growth plates in his foot that they will remove.  He'll have to be in a hard cast (and his foot has to be casted sideways) for 4 weeks, then a soft cast and physical therapy for another 4 weeks.  Apparently he doesn't use his calf muscles properly because of the foot so he's going to have to learn how to walk using muscles he hasn't really used.   According to the doctor's it's not a fun surgery, he will be in the hospital for 2 days for pain management and the recovery process isn't a walk in the park.   And that my friends, is how we will be spending Spring Break!  Every night Zach does a countdown for how many days till his surgery.  14 days away.  He's anxious.

So in a nutshell, things have been a bit busier than normal!  
.....normal?  Why do I even say that anymore?  I don't know what normal is anymore!!!