Thursday, December 10, 2015

Back from NJ

Saturday night we left for NJ. We made the looooooong drive through the night and made it around lunch time Sunday. We had a little time to kill so we drove around Summit for a little while to find the hospital and to see what was around. We ended up coming across a really neat live nativity. After that we called it a night because we were all pretty exhausted.

The next morning Leila had her pre-op appointment with Dr. Nuzzo. It was the first appointment of the day so we had the rest of the day to play. We realized we were less than 30 minutes from Liberty State Park where we could catch the ferry to see Ellis Island and the Statue of Liberty so that's what we did since none of us had ever seen it in person. 

Tuesday morning we had to be at the hospital at 7:30 for 9:30 surgery. They let me go back with Leila to the OR and stay with her till she was asleep which was nice because she was able to stay calm. The doctor came out and told us everything went well and then the nurse came to take us back to see her. She was really irritable (who isn't when coming off anesthesia). It took a little while and quite a few medications to get her calmed down and resting. After a while she started to come out of it and wanted to eat and drink. They didn't put casts on her. They let us use her AFOs as a cast so that was nice. Her incisions really are tiny. They gave her good medicines that pretty much just knocked her out so as soon as we got back to the hotel she was out for the night. 

Friday morning we got up really early and hit the road again. We only stopped one time for lunch and gas and pushed through and got back to Nashville around 6:30. Leila was a trooper. I stayed on top of her pain medicines to make sure she was comfortable. She only had one incident where she was having a muscle spasm which they say is pretty common right after a surgery like this but I gave her medicine and it almost immediately went away. 

She has still been pretty out of it because of exhaustion and medicines but we are starting to be able to get her off of some of the medications. We can already tell a difference in that her legs feel much better and she can straighten them out no problem now. We can also tell a difference in her arms. Last night she was reaching really high to hit her cousin in the nose. She thought that was hilarious. We can also tell a little difference in her core. She will have to relearn some things and get used to her new body but I think this was the right decision for her and I can't wait to see the full effect when she's over the after affects of surgery!

Sunday, November 15, 2015

Prayers as we go to New Jersey

           Several months ago, I kept seeing a procedure discussed on a CP page that I follow on Facebook. It sounded like something that would be good for Leila so I started researching. As of right now there are only two doctors in the whole US who do this procedure. One is in Texas and one (the one who started the procedure) is in New Jersey. It's called SPML (Selective Percutaneous Myofascial Lengthening).
           As the name suggests it is a lengthening procedure that will help the muscles/tendons work more normally. We have thought long and hard and prayed about this and we feel like it is something we need to do for Leila. Her developmental neurologist at Vandy recommended the doctor in New Jersey. I made the calls, sent the paperwork and videos, and got the process started. I got the email back saying that Leila would be a good candidate. So, here we are! We are going to New Jersey in just less than 3 weeks!
           This surgery could be life changing for Leila! There a lot of reasons we are choosing this procedure over other procedures that can be done here. TRUST ME, I have done the research and we feel this is the best option for Leila. We are scared, nervous, anxious, excited...just about every emotion you can imagine. This is a big undertaking. We hope you will pray for us to have safe travels and that this procedure will be completely beneficial to Leila. 

           If you would like to learn more about the procedure and why we would choose to go all the way to New Jersey over having one of the traditional procedures done here you can visit Dr. Nuzzo's website. There is a TON of information there. Here is a link to a FAQ page about the procedure.

           I'm also open to questions. Feel free to ask!