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

Updates!

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.

Wednesday, April 5, 2017

Monument Avenue 10K!

What a difference a year makes!  Last year Alex was signed up to run the Monument Avenue 10K but due to a series of illnesses she couldn't (click here to read about last years race).  When we had to pull Alex out at the last minute her amazing Inclusive Racing family had her there in spirit and ran with a cardboard picture of her.  This year I'm happy to report she was there in person and had the best time!

Meet Team Alex!! 
Madison, Katie, Jenny, Caitlin, Glenn, Dennis, Nathan and Teresa

As if running with Alex wasn't enough, the girls that were running with her all had matching headbands and they had one for Alex too!


This is the second time we've run with Nate and sometimes when you meet someone, you just instantly know they are good people and you adore them - I do adore you Nate!!  Nate made an Alex sign for the side of running stroller so the folks along the way could cheer her name.



Inclusive Racing had quite a few athletes this year!!!  

This picture speaks volumes to me.  First of all, it means the word about Inclusive is getting out and more and more people get to experience the sheer joy of running with this group.  But secondly, and I say this every race, it shows how many amazing people there are out there that are willing to sacrifice their personal race times and sacrifice their time and energy for people who wouldn't otherwise be able to enjoy this experience.  I'm getting super teary eyed just writing this but, as her mom, I do not have enough words of thanks, gratitude and appreciation for these runners that give her this gift. When I see the joy on her face as she gets her medal or see her smiling face when she runs by us at whatever mile marker we are at, I say a prayer of special thanks for these amazing people.  

(For more information on Inclusive Racing you can visit their Facebook page at https://www.facebook.com/InclusiveRacing/)


The excitement and enthusiasm of Team Alex was contagious!!





Congratulations Team Alex on a race well run - they finished in 58:26!

This beautiful smile sums up her race experience and says it all.  

And this, this right here warms my heart more than anything.  This is the pinnacle of race day.  This is what they mean by a picture is worth a thousand words.  This is pure beauty and this is what an amazing heart looks like.

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!!!

Monday, February 6, 2017

Happy Birthday Sweet Girl!

Well, I started this post in November and here it is February!

We celebrated this sweet girls 15th birthday on November 23rd.  


15.  Doesn't seem possible.  We've been through a lot the last 15 years and she has taught me so much about myself and about the things that really matter.  She's endured way more than any 15 year old girl should have to, yet she powers through every day and every struggle with a smile on her face and determination.  

This birthday was special for a lot of reasons but it was made even more special by two people we didn't meet until the night before her birthday.  Back in September when Alex was so sick she was put into a palliative care group called Noah's Children.  I need to write a whole separate post about this amazing organization and what a blessing it has been to us.  A woman named Pearl had contacted Noah's Children and wanted to celebrate the life of their granddaughter that was born still born in November 2 years ago by helping to celebrate a child in the program.  Our nurse manager contacted me and asked if she could put Pearl in touch with me since Alex was getting ready to celebrate her birthday.   Pearl and I spoke on the phone and she and her husband Joe wanted to bring something to make her birthday special.  

Meet Pearl and Joe!
Alex was very excited to meet them! :) 

Not only did Pearl bring a cake, but she made Alex a special doll cake from scratch.  When I was younger, my grandmother had a Barbie doll cake made from a Darcy Barbie.  It was my favorite birthday cake of all time and it brought back wonderful memories of my grandmother.  It made this cake that Pearl made so much more special.






And they brought her a gift that she loves, the dancing robot - she giggles every time he dances.


The world is full of so much hatred and turmoil right now that I can't even begin to express what this gesture did for my soul. Joe and Pearl chose to take a devastating event and turn it into a blessing for a complete stranger.  If we were all a bit more like Pearl and Joe the world would be a much better place.  

The next day on Alex's actual birthday we lit the candles and sang Happy Birthday to her and she loved it.  





Later that afternoon we had friends over and my sweet little friend Jane Anne made her this picture. The world could really use a few more Jane Anne's as well.  I love this sweet soul more than she knows.  I also love this picture and how I feel like they're saying SO much to each other without saying a word.  


Alex enjoyed another round of singing Happy Birthday, eating some icing and opening her presents.







The next day was Thanksgiving and it also happened to be her most favorite person on the planet's birthday too - HAPPY BIRTHDAY PAPA!!!


And more celebrating!


I am so thankful for the friends we have in our life, old and new.  I'm beyond thankful for our families and for all of the love that is bestowed upon our sweet girl.

So much more to catch up on, hopefully it wont be another 5 months before I can blog again!!