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.

Tuesday, July 18, 2017


I seriously cannot believe how long it has taken me to update my blog :(  

Back in April Zach had the surgery on his foot that was collapsing in on itself.  It was a pretty invasive surgery where they removed his heel and relocated it with pins and screws, he had a titanium wedge inserted in the top of his foot and he had extra bones removed.  

He was very nervous going in but I learned that my kid turns into quite the comedian when he's nervous.  He had the whole surgical team laughing during all of his pre-op preps.

All things considered, he did remarkably well.  It was bone surgery so he was initially in a lot of pain and was on a morphine drip for the day.

The night was really tough but what really perked him up was visits from the dogs that visit.  He was in a ton of pain the next morning and hadn't slept much at all when the second round of dogs came to visit.  Aaron had climbed in bed with him and as I was talking to the owner of the dog the dog had fallen asleep on Zach's cast and Zach fell asleep with his hand on the dog.  I absolutely love this picture.  Who says animals aren't healing?!?

We were definitely a vision walking around the neighborhood!!

Zach specifically requested this patriotic cast and it was delivered to the operating room just before his surgery - he got a ton of compliments on it too!

When we went in for the first cast change Zach and I were a little taken aback by how his foot looked.  I'll spare you the pictures I took, but his second cast was equally cool as my boy loves him some cammo!

It was a long 6 weeks on crutches followed by a boot but I'm so pleased with how well he did with everything and what a trooper he was the whole time.  We've had some physical therapy since he's been out of the cast and the before and after of his foot looks amazing to me - he actually has an arch in his foot now!

We have to think about having the other foot done sometime next year but now that he knows what to expect he's not so on board at the moment!

On to Ms. Alex.   In 2015 I wrote two posts (This one and this one ) about the gland surgery that she had to have to reduce the copious amounts of drooling she had.  Basically you have 6 major salivary glands - back in 2015 they removed her submandibular glands and tied off her parotid glands.  She did amazing for about a year and half when the drool slowly started to return.  This last year she choked several times on her saliva and turned blue twice.  We went back the ENT who did her surgery and she said it was time for the remaining two glands to come out so surgery was scheduled for May to have her sublingual glands removed.  The night before surgery Alex decided she was going to throw a big ole monkey wrench in those plans and decided to spike a temperature that by the end of the night was 104 and her heart rate was up to 145 - she had developed an atypical mycoplasma pneumonia and surgery was rescheduled to June.

On the morning of her surgery she was in SUCH a good mood and she was so alert and happy to be playing on the hospital I-pad - not something she ever really does a lot of.  

She gave her Daddy lots of adoring love too.  It really broke my heart when they took her back because I knew how miserable she was going to be in the next few hours.

We definitely did not have a good night.  We were in the PACU until 8:30 that night (we had arrived at the hospital at 6:30AM).  She was finally transferred to the pediatric floor and she had fallen asleep at 1:03AM - yes, 1:03 to be specific!  At 1:30AM Alex got a roommate and it was game on for the rest of the night.  I will say with all of the hospital stays we have had we've been lucky to never have had a roommate and I can tell you after this experience I am SO grateful for that.  Alex cried ALL night long, as did her roommate.  It was torture.  At 6:30AM Alex had a pretty massive seizure and they weren't going to release her as planned but I spoke with the attending and said if she was cleared surgically I was taking her home - seizures are unfortunately a way of life for us and I was not spending a minute longer there than I needed to!

Unfortunately at this time it doesn't look the surgery was a success.  When we we met with the surgeon she said that when they went in to remove her sublingual glands they were the largest glands she's ever seen.  Her guess is that those glands over compensated and now the secondary glands in her mouth (which cannot be removed) are doing the same thing.  We've already tried medications in the past to deal with this and they were unsuccessful as well so I'm really not sure we have a Plan B at this time :( 

I have so, so much more to blog about.  The biggest thing right now is that we've been back to Shriner's and Alex's curved has progressed even further so delaying surgery is no longer an option. Alex is scheduled for a full spinal fusion in September and I cannot tell you how much angst and fear I have over this surgery.  There are SO many things that play a major role in this surgery and if I'm being honest, I seriously want to vomit every time I think about it.   I'll try and update more soon, but in the meantime, please keep my sweet girl in your prayers with this upcoming surgery.