One Small Step for Man, One Giant Leap for Super Joe!

I don't know how this happened.  We worked on it tirelessly last week at therapy until the point where Joey dropped his head due to fatigue and started crying.  Over and over the therapist would try to help him stand up by pulling up to a block. See-- this is a skill that he has not yet mastered.  He will be two in August and until now he has never, ever independently pulled himself up anywhere.  Not up to a table.  Not up to a toy.  Not up in his bed.  Nowhere.  

Part of it is from his heart surgery compromising his core muscles and traumatizing his chest area.  Part of it is low tone in his arms and legs.  Part of it is strength. 


After his eye surgery on Monday and crazy hot day out in the 95 degree day (hmmmm... his discharge papers said quiet activity for a week-- I wonder if the parade with the fire truck and police sirens qualifies?) I never in a million years expected he would try to do anything tonight.

And isn't that what is the coolest part about kids?  They do things on their own time.  We provide the opportunities and the support, but ultimately, it is all about what they are motivated to do when they are motivated to do it.

Poor Tom.  I screamed at the top of my lungs from the upstairs bathroom.  "TOM!!!!!!!  GET UP HERE!!!"  He and Tommy came running up the stairs, wrestled the baby gate as I apologized through tears of joy for scaring him.  "He did it!!!  He pulled himself up to standing!!!"  He did it three times tonight on his own.  This is only the beginning.  We have been told to not expect Joey to walk until he is 3 or 4. For the first time ever, I am truly starting thing he might just surprise us all.  Pulling himself up to standing is just the first step towards walking!


Here is another video we took to take into therapy because for some reason Joey has thus far refused to show his OT just how fabulous he has become at getting in and out of sitting.  Go Super Joe!  Go!

Super Joe Does it Again!

Another adventure under our belts!  We arrived at the Cleveland Clinic around 7am and unfortunately the surgery before Joey's ran quite a bit longer than was anticipated and he didn't end up going back to the operating room until about 10:30.  As usual, he was Super Joe and Tom and I tried to keep him distracted from the rumblings in his tummy.

With both sets of grandparents waiting out in the main area we had constant coverage for bathroom breaks and a quick cup of coffee.

At some point while we were talking to the surgeon, one of the nurses did this:

A magic marker dot above each eye to be operated on.  It was hilarious because neither of us noticed her doing it and when we finally did notice we were like, "Did you put those dots on his eyes?" 

The waiting is usually the hardest part, but Joey has such an incredible personality and it was just a chance for use to hold him and play with him for a couple of hours.

When it was finally Joey's turn we had a final meeting with his surgeon and it was decided that we would have the bottom two muscles on each eye cut and reattached during this surgery and then in about three months we will come back to do the top two muscles on each eye.  Apparently, the top muscle procedure is more invasive in that they have to not only cut the eye muscle and reattach it, but they also have to cut it, remove part of it to shorten it and then reattach it.  Joey's doctor wanted to go the more conservative route and just do two yesterday.

For the first time in any of his surgeries/procedures, we were told that one of us would be going back to the OR with him to help keep him calm while they started the anesthesia.  I decided to go (only one parent is allowed back) and donned the blue jumpsuit, mask and hair net.

Joey had a wonderful time pulling off my hair net the entire walk back to the OR.  The OR was super chilly and it seemed like such a large room with so many people for just eye surgery.  I think I counted six people in scrubs.  They had me lay Joey down on the operating table and then they asked me to sing to him and comfort him while they put the mask on his face.  He struggled.  I struggled.  It was hard to watch, but they told us it wasn't for the parent's sake, but for the kid's sake that they have one of us go back.  I hope that he felt some comfort seeing mama as the last person before he went under.

The actual surgery ended up taking almost just an hour and we first went back to meet with the surgeon who said that everything went really well.  We went back out to the waiting area and just about 10 minutes later the Child Life Specialist came out and said we could go see Joey, but to be very quiet because he was still sleeping.  

The only way you could tell he had just had surgery was a tiny tear of red blood in the corner of his eye.  Other than that, he looked like he was just taking a lovely mid-summer's nap.  We settled in thinking he wouldn't be awake for awhile and the nurse told us that if he wasn't awake in an hour that we would try to wake him up.

We both settled into a chair and stared at him.

One of my friends said that I looked so calm in the pictures, and I was calm until about two minutes after this picture was taken which is when the pictures stopped and the you know what hit the fan.

I hate to say it was like out of a horror movie, but literally he went from being sound asleep like this to flipping over, screaming bloody murder and coughing like he was gagging.  We both freaked out.  He was thrashing around, rubbing his eyes (ugh-- the one thing we really have to try to keep him from doing), bawling, screaming, coughing--it was a nightmare.  I told Tom to grab the nurse and she was right in.  Apparently this is why we wanted him to try to quietly wake up.  He woke up like a man on a mission to find out who messed with his eyes.  He tried to chew his IV line off his arm.  I mean seriously-- the next time someone tells me the old misnomer about how people who have Down syndrome are so happy all the time, I might have to recount this story for them.  Joey. Was. NOT. Happy.  At all.  He was ticked off.  

He finally took a bottle of thickened water, the nurse gave him some more pain medication through his IV and he settled down for a little bit.  That lasted for about 20 minutes or so and then he started crying and would not stop for over an hour.  The nurse told us that the older kids say that this procedure makes you feel like you have sand in your eyes for a week or so.  His little eyes had blood-stained tears and they were swollen and red.  

Eventually he finally settled down right after the doctor sent in a prescription for Codeine that we never ended up using.  Once he was a little calmer we finally got him in the car and home.

Today he doing much, much better.  Not really excited about having to do this to him again, but we will do what we have to.  I just wish I could do it for him.  In the meantime, we are putting in his medicated eye drops twice a day and trying to keep his eyes clean.  The right eye seems to be oozing some green icky stuff, so we are going to keep a close watch on that for signs of an infection.

In the meantime, thanks to every single person who sent prayers and love to Super Joe!!!  For the snacks, the cookies, the turkey chili, the wine, the chicken and stuffed potatoes, the yummy BBQ meal, the sweet treats, the moral support and the love for this little man-- we feel so incredibly blessed and fortunate as we celebrate Joey's successful surgery along with our nation's Independence Day.

Happy Fourth to you and your family!  How are you going to celebrate?  

Joey's Eye Surgery - The Mysteries of Nystagmus

And once the storm is over, you won't 

remember how you made it through, how

you managed to survive.  You can't even be

sure, whether the storm is really over.

But one thing is certain.  When you come out of the storm, 

you won't be the same person who walked in.

-Hanki Murakami

Nystagmus is a weird one.  It is a "repetitive, involuntary movement of the eyeballs, usually involving both eyes" according to my copy of Babies with Down Syndrome: A New Parents' Guide.  It can cause problems with eyesight and in Joey's case, it is also causing optical torticollis.  Optical torticollis means that he tilts his head back to try and steady his eyes from jumping side to side. 


Below are some photos of how Joey tilts his head back about 99% of the time instead of looking at things straight on. 

His eye doctor decided to wait awhile to see if his head tilt would get better and so we've been watching him for about a year now.  After our last visit about a month ago, his eye doctor decided that now is the time to try surgery to help correct Joey's head tilt and to help calm his eyes.  


Will this help him learn to crawl on all fours?  We hope so.  Will this help him be able to stand better?  Maybe.  Will this help his gross and fine motor skills and development.  We really hope so.  The doctor believes there is about a 75% chance of success.


Initially they were going to cut and re-attach four muscles on each eye for a total of 8 muscles.  As of a week ago they were going to start with two muscles on each eye and then do the other two in a couple of months during a separate surgery.  We will find out for sure tomorrow.


This will be the fourth time in the past year that Joey has undergone anesthesia.  The first was at the University of Michigan for his heart surgery.  The second was at University Hospital for his ear tubes.  The third was at Akron Children's for his auditory brain stem response testing and now the fourth procedure will be a the Cleveland Clinic.

I wish I could say it gets easier.  It doesn't.  Each time it gets harder because he is getting older and more aware.  Each time we hand him over to strangers in medical masks I worry and my stomach rolls into knots.  With each procedure Tommy is older and there are more questions to answer from him.


At the end of the day we are doing what we have to do to help Joey be his best self.  Unfortunately, that doesn't usually make it any easier.  


I tried to take some videos to look at his eyes pre-surgery so we have something to compare them to afterwards.  The reason he is in the high chair in the videos is if he is on the ground he is in motion.  His army crawling has taken on a new level of speed!


If you think about it today-- please say a little prayer for Super Joe that his operation is as pain-free and uneventful as possible.  We thank you so very much.