Tuesday, April 28, 2015

3 Weeks Post-PERCS

Andrew is now 3 weeks post-PERCS after SDR. He is still wearing casts, so is using his wheelchair far more than we want him to right now. Casts come off tomorrow morning and then it is back to using his walker full time! We are all very excited for that. In the meantime, the dressings on the incisions are off and the steri-strips have finally come all the way off. Being that I am NOT a nursey person, I have to tell you that I found that part of the healing to be entirely disgusting and I am very happy that I don't have to watch those things come off anymore.

Andrew is doing great in therapy! It is awesome to see his heels striking the floor and his knees mostly straight.

He didn't lose much of the strength that he had gained post-SDR in this surgery, so we are really hoping that once the casts are off, he will improve rapidly. An added bonus to the casts is that it adds a level of difficulty to his exercises. Basically, the kid is weight training. :)

Check out these pictures from last week's therapy session!





And then... this happened. Andrew felt stable and decided to try letting go on his own. His heels are flat. His knees are not completely straight yet, but that will come with gaining more strength.


In the last 2 years, this 10-year old kid has gone through 3 surgeries (2 lengthening, 1 SDR), 2 hospital stays, 2 castings, various bracing systems, knee immobilizers, and 100s of hours of physical therapy (over 100 just since November). Even though he does get frustrated and burnt out occasionally, he is determined and is pushing himself hard. His shirt says it all: defeat is not an option.



If you want to donate to Andrew's therapy/medical costs, click here: www.youcaring.com/helpandrewwalk

Thursday, April 16, 2015

PERCS: The Second Stage to Andrew's Transformation

We just got back from a week in St. Louis, MO where Andrew underwent the second procedure (PERCS) to help him with walking. It was the kids' Spring Break from school, so we took everyone so we could do some fun things while we were there.

I have family about halfway to St. Louis, so we stopped to spend Easter with them. We were there for two days there before heading out.  On Saturday, we went to a really neat park that had many accessible areas. Andrew used his walker for some parts, but used his wheelchair once he got tired.


On Sunday, Andrew and the kids' had an Easter egg hunt with their cousin. Andrew was able to use his walker for the egg hunt, for the first time ever! It was awesome that we didn't have to carry him around or have him crawl to participate.


Monday was filled with doctor's appointments and evaluations. We had his 4 month post-op check with Dr. Park and his PT team. Andrew is progressing nicely and should hopefully be walking independently around that 2 year mark. Andrew wants it to be faster, but I am just excited that independent walking might now be in his future!

Andrew with Dr. Park
After his post-op, PT evaluation and pre-op, we were off to have some fun. One highlight of our trip was the free St. Louis Zoo. If you are ever there, I highly recommend it! It's better than many of the zoos we have been to in the past.

Practicing my photography skills while the kids check out the elephants.
Tuesday was surgery day. Whereas SDR got rid of the spasticity that causes his legs to be tight, PERCS released the shortened muscles caused by the spasticity. The surgeon, Dr. Dobbs, decided to do both hamstrings and both Achilles in order to get him to walk with his knees straight and heels flat, and to hopefully avoid future surgeries for the foot deformities that are already starting to show. Andrew came home with casts on his feet/lower legs and has to wear knee immobilizers so that he heels in the lengthened position.

Andrew did great during the surgery and woke up in a silly, happy mood (thanks to some "anti-freak out" drugs). I am so glad that the anesthesiologist mentioned this medication before Andrew's SDR surgery. In all of the surgeries he had prior to November, he woke up CRAZY... ripping out IVS, trying to tear off casts, screaming, yelling, crying... completely out of control. They gave him this medication during both this procedure and SDR and woke up saying he felt awesome and started making jokes. 
Andrew in recovery. AKA: Andrew comedy hour.
One orange cast, one red
Andrew couldn't wait to see his siblings after waking up.
He asked for a picture with Ben as soon as we got to his room.
PERCS requires an overnight hospital stay. Since the other two kids were with us, Daddy ended up staying with Andrew for the majority of the stay. However, we did utilize the hospital's sibling playroom. We were able to drop off both kids at that room where they played and had fun while we were with Andrew. In fact, once Andrew was up to going to the in-patient playroom in the evening, Daddy and I were able to have some alone time wandering the hospital. It was great to have a little break and we felt comfortable that all three kids were being taken care of.

The next morning, Andrew was released from the hospital. We took everyone back to the hotel room for some much needed rest and then did some sightseeing around St. Louis in the evening. We went to the arch, ate at The Old Spaghetti Factory (one of our favorite restaurants from CA), and had some good family time. We had never seen the arch up close. It is AWESOME.

My daughter under the arch. I can't even begin to describe how big this thing is.

Trying to climb the arch.
Andrew even tried to get in on the arch climbing.



The next day was the beginning of our drive back home. It's just about 13 hours without stopping or traffic, so we split it into two days.  On the day that we left the hotel, we did a little PT with Andrew. We got him up to do some walking and standing and were amazed with how straight his knees are with his feet flat on the floor. He was still pretty sore that day and could only tolerate a short distance in his walker. He also began tolerating stretching. It was awesome to see how straight we could get his knees without much effort. 

Straight-ish knees and feet flat!

Stretching... straight knees!
Tuesday marked 1 week post-PERCS. It's been crazy back at home getting unpacked and back into our normal routine. He went to school on Tuesday and Wednesday for full days, but stayed home Monday and today. He will most likely go back tomorrow and should be fine for a full week next week. We are focusing on therapy right now to help him build back his strength and keep his new range of motion. He is exhausted from healing from surgery, working hard in PT and attending school. I can't wait to see how he progresses over the next few months!

To donate to Andrew's surgeries/recovery/PT, please click this link:
www.youcaring.com/helpandrewwalk