April! And the end of April to boot. My how time flies when you are living life!
It's been a while since I did an actual update, so while I appear to be on a blog binge, I thought I might do one today. It's hard to update though when things are quiet and normal because no one wants to read, "Things are quiet and normal!"
I'm really not sure when the last update was so I will just start from January.
In January, things started changing for David. Now I am not a fan of change, simply because I equate it with something negative. Yeah that's me, the cup half empty kinda girl, but the changes we have under gone have actually turned out to be pretty positive.
Also in January, David was still home bound for school, but after some discussion, we decided that since he would be transitioning to the high school next year anyway, and since he was 15, perhaps this was the ideal time to actually start the transition. So....his whole team changed and his new high school team began coming to the house to work with him. Although we (especially me), missed the comfort of knowing everyone and how everything worked at MGS, I knew that it was time I bit the bullet and admitted that my baby, wasn't even remotely a baby anymore. Can I say this sucked? But I knew it was for the best.
David seemed to like the new faces and the new home bound schedule and amazingly seemed to handle it well. After a couple of weeks, we set a date for him to actually start back to school. This time, he would be attending high school. You will never know the mixed emotions I had when I sent him that first day. As I put him on the bus, I had great hopes that this would be the start of something really good for him, but I still felt hot tears stinging the backs of my eyes as I sent him off. It was a mile stone that I only dreamed of previously. Now we were living it.
Well, it seems that the move to the high school was a good choice for him. I think he truly enjoys being with kids his own age and I have noticed that his attitude and mannerisms have matured a bit, even at home. He is not nearly as wild as he was and the reports from the school are that he is acclimated well.
One of the best things about the transfer to the high school, has been the kids. I have had several parents contact me and tell me that their kids have come home and told them that they have seen David in the halls. They are truly happy he is there and very welcoming. A couple of kids have even told me that....they have Davids back, should the need arise. While I don't anticipate the need arising, this has still been very unexpected and very appreciated.
In March David had another EEG. It was a great experience for many reasons. Usually David has to have mild sedation in order to do the test because he likes to move around and is a little bit combative when people come at his head. This then adds a good 30-45 minutes in the office. This time though, David sat in the chair, let them put the wires on and never moved. We were in and out in under an hour. It was wonderful! The best part though was that his results came back NORMAL. This means that his meds and his VNS are currently keeping the seizures well under control. In March he had been almost 4 months without a seizure. That is the longest he had been since he started having seizures in 2008.
David has a flex sort of schedule at school this year. He goes Monday, Tuesday and Thursday. He has Wednesday off as a sort of a recuperation day and Friday because he has Physical Therapy (PT) at Heartsprings in Wichita. This is working out well for him and I think it makes school easier for him. Honestly, it makes my life easier too. This will likely change next year, but for now, it is ideal.
In February, it became apparent that Davids home bound school status and his more inactive lifestyle at home had done him no favors. He had lost some weight due to the fact that he had grown a couple of inches, but more alarming to me was that he was losing muscle mass, which meant he was quickly losing his lower body strength and his ability to walk. His upper body is very strong, but his lower body was starting to fall way behind and with these kids, when they start to fall behind, they may never be able to regain what they lose. David had undergone too much and worked too hard for me to allow him to lose anything.
I was now on a mission to get David back to where he was prior to being home bound. I talked to the doctor and his PT and then I put him on a new food plan. He now eats 5-6 times per day and his diet is full of healthy fats, protein and a good selection of fruits and veggies. You would be amazed how expensive it is to eat this healthy. My grocery bill has nearly doubled, but the up side is that he has gained 4 lbs and he is getting much stronger. His PT is thrilled at the progress he is making and so am I. We are finally starting to catch up again.
At the end of March, David had his baclofen pump surgically replaced. This pump is in his abdomen and it has tiny tubes/wires that constantly take baclofen (muscle relaxant) to his muscles to keep him from being very tight and rigid because of his cerebral palsy. Every seven years this pump and the wires (if necessary) need to be replaced. This was his seven year mark. It is an outpatient surgery, that went very well. He was back at school within a week. Unfortunately, he was allergic to the steri-strips or possibly what they attached the steri-strips with and the skin around his incision became inflamed and almost infected. It happened all of a sudden and about a week after the surgery. Luckily his school para and teacher were on their toes and caught it. We got him in just as it was starting to blister and get very nasty. It took a doctor appt., antibiotics and an ER trip but now it looks amazing.
Then this month. Hmmm....well....he has had one really rough seizure which landed him in the hospital and then a couple of small seizures. The main (big) seizure he had was the product of him hitting his head when he came up underneath a door knob. He kind of half laughed and half cried when it happened and I frantically checked him for a break in the skin and that he didn't hit his shunt. He seemed fine, but within an hour he had a full on seizure. It earned him an ambulance trip to the ER and an overnight stay in the hospital. Luckily there was not shunt damage, but unfortunately he did give himself a concussion. He was my first kid to get one. Sigh..... What an honor! Since, he has had a couple of small seizures, but they think that more than related to the concussion, it might be that his growth spurt has caused him to outgrow his med dosages. We are watching them currently to see if a pattern emerges. Stay tuned......
All in all.....David is doing amazing. He has lots of energy and he is very happy. He is doing well in school and he is non stop on the go at home. He seems to be comprehending more than he ever has before and his physical abilities continue to expand and grow daily.
Currently the speed bumps are small but when they do happen they are few and far between. We did find out that probably in the next 6-9 months he will have to have a spine fusion surgery as he does have a pretty good case of scoliosis. His is in the lower part of his back and he currently has about a 43% curve. They don't want to do anything until it is 45%. It will be a fairly significant surgery with about a week in the hospital and a 6-8 week recovery time. When he gets it, it should make a huge difference in his posture and his ability to move, walk and position himself. With that in his future, his PT and I are working like crazy to make sure he is as strong and healthy as he can be by then so that his recovery is just that much easier. Yep....another speed bump.
So that about covers it all. Life is good right now. We ride the waves of peace when we can and then pick ourselves back up when we fall. But really....isn't that the way everyone does it?
Until next time.......
