Serial Casting

Evan is just hanging out in the office waiting for Dr. Hart.


The process of serial casting.

The finished product. Evan also got a cast shoe to go over this so he can walk on it. I have arranged for him to use his wheelchair on the bus and at school if needed for the time he is in the casts.

I should explain a little about serial casting. Basically, each week they will take the cast off and stretch his foot more and then put another cast on and this will go on for about 6 weeks as I understand it. While we were there we also had an analysis done in the motion lab which is basically a video of Evan walking and using his left hand and then when we are all done we will do another one so that the Dr. can keep track of his progress. I am hoping that I will get to see Evan walking flat footed on both feet, that would be such a miracle for us and for him. So I will be spending a lot of time at Shriner's over the next few weeks and probably over the next few years doing this to keep Evan from toe walking.We will be doing Botox on his left hand on May 26th so we are not away from Botox all together. I feel like good things are happening and I am really glad to be working Evan's spasticity and gait. And with the serial casting Evan will get to have a different color cast each week, well they only have 3 boy colors so it will be blue, red, green and then repeat.

Happy/Sad Friday

I guess we will start with the sad part first. Today I picked up Evan's first prescription of Anti-seizure medication. I was very sad and angry that I had to do this, I am having a hard time accepting that Evan has had 2 seizures and will most likely have more and this is only the beginning of our journey in this area. I worried and worried about seizures for so long and then when I began accepting that it may happen and was comfortable that I would know what to do when it did I worried less and less. Of course now that is has happened I worry more, I get butterflies in my stomach whenever I am away from home or Evan is at school and my cell phone rings. Whenever Evan stares I always call his name to make sure he is not in a seizure. I watch him while he sleeps looking for any odd movement. I scour the internet for information on seizures and different types. This is just hard for me to handle but I know just like everything with his "terrible palsy" (borrowed this from another cpmom) I will learn to cope with this new development also. But I certainly do not have to like it and I will complain about it. I am sure it is weird to take a pic of the medication bottle but I am a scrapbooker and I am going to document this new phase in our lives.

Friday January 25, 2008 At 4:43 pm we got Evan's long awaited Dynavox Communication Device. We were so excited. Evan knows it is for him and it has been hard to program it when he is around. We started this process in July so we have been waiting a long time to get it.

You cannot tell in this picturebut Evan's Dynavox is blue with ablack carrying case to protect it. Wewill definitley need that. Look for Evan tobe "talking" up a storm the next time you see him.I will be going to Dynavox University on March 5thto learn how to make the device the most useful for Evan.And we will also be going to Sac State in the spring to get help as well.I want to be able to get the best use out of the device for Evan. I just know that his Dynavox will help him go far and will be the key to a whole new world for him. I cannot wait for the day when he is able to use it himself and I can really know what is going on in that cute little head of his.

Special Tomato Chair/Leckey Advanced Seat 1/29/08

Evan got a Special Tomato Feeding chair today, it was needed because he grew out of his highchair and was not yet able to sit in the regular dining room chair.

This chair is great except for the fact that Evan could tip it over if he tried to rock in it and he fell in it a couple of times.

We ended up getting a different chair because this one was deemed too dangerous for him.

You can't see the whole thing in this pic. But we got a Leckey Advanced Seat, it is a really great chair. It is a much better fit for Evan

Change of Plans -Serial Casting instead of Botox 2/08

As many of you know today was the day Evan was scheduled
to get Botox in his left let/foot at Shriners. We were a little nervous about this due to the news story that came out on Friday. We decided to go in to the Dr. and ask him about it and go from there. We knew that we would most likely go ahead with the Botox because the benefit of Evan walking on his left foot flat is great, not doing so will likely cause long term affects in his hips and back. So we talked to the Dr. and he felt that it was ok to go ahead with the Botox and that the children who passed had received Botox but it was not certain that it was the cause of death but could have aggrivated an already ill child.
After the Dr. examined Evan he explained that Evan had a contracture which in our case means that he was not able to straighten Evan's leg and get his foot into neutral. (think 90 degree angle)The Dr. mentioned that there was a study done on children with contractures and using botox, serial casting or a combination of the two. The study showed that the serial casting alone brought a longer lasting and better affect than Botox alone or Botox combined with serial casting. So we decided to go ahead with the recommendation of the Dr. and do just the serial casting with the option of Botox at a later date if we were not getting desired results with the casting alone.

Botox Tomorrow 2-2008

Well tomorrow is the big day. Evan will get his first round of Botox in his left leg/foot. One one hand I am really excited to see how he does it would be great for him to walk on his flat foot on the left side and not be so tight. But I am nervous as this is a new thing and I do not know how he will handle it. Plus there was the big news story about Botox and some kids that have died. But Rudy and I talked about it and we feel that it is still ok to go ahead and do it. We are of course going to talk with the Dr. before hand. Evan will also be getting Botox on his left hand in May but he has to be sedated for that because it is a bit more painful and precise procedure. I think it would be really hard to keep his left hand still. Our appt starts tomorrow at 12:15 when we go to the motion lab and then we have the appt with the Dr. at 1pm. I really like the Dr. at Shriner's who is going to be doing this and I feel confident in his abilities. I of course will be taking pictures and posting those tomorrow or the next day.

Official Seizure Diagnosis 2-2008

Well, we got the official word from the neurologist that the episode that Evan had earlier in the month was definitley a seizure and when I voiced my suspicions about another possible episode this past thursday the Dr. decided we should put Evan on an anti seizure medication. So we will see how things go. I am really sad, angry, frustated and scared about entering the world of seizures. For me it is so unknown and now so many new things have cropped up for me to worry about. I hate that my sweet little boy has to go through this among all the other stuff he deals with. It just seems so unfair. I feel the same way about other kids I know who have special needs and seizures along with it.

First Seizure January 2008

Evan starts back to school tomorrow after being off for 4 weeks. I am so excited about this. We had a great visit with Dr. Hart at Shriner's, Evan will go on February 12th to get Botox injections in his leg and foot. Botox injections help paralyze the muscles in order to get more stretching and flexibility out of them. Very good for kids with spastic CP. One week after the injections Evan will get a walking cast on his foot and wear that for two weeks and then we will be re-evaluated and he may get another one and may not just depends how it all works out. After the botox and serial casting then Evan will be re-evaluated for a new pair of orthotics. In May we will go back to Shriner's and have botox injections in his hand and arm. I am also hoping to get a hand splint out of this as well.
On the same day as his Shriner's appt which was January 2nd, we believe that Evan had his first seizure. Now this is what is called an absence seizure so it is not the typical grand mal seizures that most people think of seizures as.
Here is what happened. Evan fell asleep on the way home from Shriner's so Rudy took him to the couch and laid with him there, they both fell asleep and Rudy woke up to Evan gagging, so Rudy sat Evan on the floor with a towel in front of him in case he vomitted. Rudy went to the bathroom and then ordered a pizza he then walked back into the living room and Evan was sitting in the same spot staring at the couch with his right hand out Rudy called his name and then picked him up, Evan was still staring and did not respond to his name or Rudy trying to turn his head to face him, this went on for about 30 seconds to one minute not to count the 5 or so minutes while Rudy was in the bathroom, Cynthia was watching Evan during this time and she said he was just staring at the couch. So the next hour Evan was basically doing three things crying, lethargic, gagging and laying on the couch or our shoulders. He did not want his milk, he did not want to eat his favorite food Pizza, nothing would console him.
I was holding him and he vomitted then we walked down the hall and I laid him in my bed and was asleep within 10 minutes, he then woke about 30 minutes later and vomitted 2 more times then was out again. And his vomit was mostly mucous and not really any stomach contents although he had not eaten well that day. So all together he slept 4 hours. He woke up at 10:30pm back to his regular self and ate some pizza and drank milk and the went to sleep around 12midnight and slept very well.
I was at the dentist with Gabe when this all started so I did not see the staring part, but I was there for the crankiness and the rest of it. I called the neuro the next day and he did not call me back. But we see him on Feb 1st. I cannot say that this was 100% a seizure but my gut and some research I did online tells me that this was an absence seizure. Even though I do not want to Evan to have another seizure, I would like to be able to get one on film to show the neurologist because I know he is going to tell me to videotape it. Double edged sword for sure in that one.