Step-Son having surgery

[ashmaster]

Frank, that is nothing short of outstanding. You and Tiffany have an amazing young man there in Simon. Bless all of you!

[David M]

That is truly awesome news.

[tx_tuff]

From Tiffany.

July 6th, 40 days Seizure Free!!!

Last week was pretty busy for Simon.

Monday we stopped by the EMU to visit before we went to see Dr. Von Allmen for the one month follow-up. She was happy to see how well he is doing. She stressed the importance of keeping him in Speech Therapy (which he began this week) to help with his word recall. He still has trouble finding the right words to say what he wants to say. He also sometimes uses the wrong word and doesn't realize it. Dr. V. reassured us that it is only temporary. He also went to Physical Therapy later that afternoon. I'm not sure how much longer he will be going; he is doing so much better. She gave us a schedule to wean him off the Keppra, which would keep him on the Topamax and Lamictal only. I was so happy she made that decision! His VNS will remain on for at least a year. Likewise, he will stay on his 2 remaining seizure meds for the same amount of time. It wasn't that long ago when he was on 6 AED's. He has come such a long way!!!!!

Wednesday was Speech Therapy, the evaluation. His speech therapist, Michelle, gave him a series of tests and confirmed he definitely needs some help getting back where he was before the surgery. He will be going to see her at least once a week, for an indefinite amount of time. Hopefully she will be able to help him get back on track by the time school starts.

Yesterday, Thursday, we went to see Dr. Baumgartner for HIS one month follow-up. He also stressed the importance of Speech Therapy. He said he was very happy that Simon has been seizure free for this long, but he himself won't relax until Simon makes it to the 6 month mark. Remember, it is possible the seizures could spontaneously regenerate, though it is impossible to predict if they will or not. But so far, he is doing well. His incision is pretty much completely healed; some of the stitches have already come out. (Simon helps with that.) We will go back to see Dr. B. and Dr. V. in 3 months.

Dr. B. talked to us about the possibility of Simon participating in a research study for speech issues related to epilepsy surgery. Simon has said before that he wants to help kids with seizures, so he said he would definitely do the study. Not to get on a soapbox here, but the chances of you knowing someone with epilepsy (not just Simon) is pretty low statistically, but pretty good realistically. 3% of the population has epilepsy. That’s 3 out of every 100 people. May not seem like a lot, may not seem like it needs as much attention as cancer or MS or other horrible, awful diseases like that, but see how different you feel when it’s your child having his brain cut into because the seizures have taken over his life. And epilepsy has been around since at least Aristotle’s time--it deserves some attention! I am so proud of Simon for all he’s been through and how brave he is. The fact that Simon wants to do what he can to help other kids, makes my heart almost burst! He is awesome!

If you ever want to learn more, of course you can go to www.epilepsy.org. I don’t think epilepsy gets enough attention, except for the dramatic grand mal seizures we see depicted on TV and in movies. I think that if anything, we have all learned that there are many sides to epilepsy, and many different types of seizures. Hopefully we have all learned that God never gives us more than he knows we can handle. Simon is stronger than I will ever be, but if he can go through all of this and still be smiling, than I know I can handle anything. Thanks again to everyone for staying with him on his incredible journey. He is blessed to have all of your support and love! He is one special little guy!

[Cypress]

This is great news that he is recovering. We will keep praying for a full recovery.

[GlockG23]

that is good news !!! thanks for the update

[cp478]

so thankful to hear the good news!
as always you and yours are in my families thoughts and prayers!

[GlockG23]

Hi Frank
Is he starting to kick your butt in the video games?

[tx_tuff]

I haven't picked up a controller in weeks, but he plays it all the time. His newest game is Ghost Busters

[canney]

Glad to hear things are going so well.
You know I can totally relate to the brain surgery thing.
Sounds like hes got it whipped.

[joncaputo]

Originally Posted by tx_tuff

I haven't picked up a controller in weeks, but he plays it all the time. His newest game is Ghost Busters

Rock on Frank!

[Tarks]

Who ya gonna call????

[fiddlegrin]

Simon!!!!

Thanks for the update Frank!!

I am of course, thrilled to hear how well things are going so far!

Sincerely, Dafiddla
.

[tx_tuff]

Well its been a little over a month since the last update, its not the best news but its not the worse either. Here is what Tiffany put on his carepage yesterday.


I have been waiting as long as I could to post this update, hoping things would change, but they haven’t. Simon’s seizures have returned. FORTUNATELY they are not even close to being as bad as they were. They are super short (like 5 seconds or less) and as far as I have been able to see, much less frequent. It’s hard to know for sure because since they are so brief, they are very easy to miss. They do seem to be daily, but definitely don’t appear to be in the 40+ range like they were. Thank God for that! And since they are so short, he doesn’t appear to totally lose awareness and doesn‘t need to rest to recover, which is a great blessing!
 
The first step was to put him back on the Keppra. That seemed to make a difference at first, but then the seizures started up again. So now he is on a gradual increase of the Lamictal. Let’s hope we see seizure control before we get to the place where the meds make him a zombie again, or interfere with his schoolwork.
 
He is still going to Speech, Occupational, and Physical therapies weekly. We are seeing huge improvement! He feels a little more confident every day from these sessions. His therapists are so great: they are patient and strong and care about him very much! We are so lucky to have such good players on Team Simon!
 
School starts on the 24th, and we’re busy trying to get Simon ready. We got the postcard from the school saying he will have Mrs. Yarborugh this year for 2nd grade: I hope she’s ready for him! Team Simon is ready for her! We are still working on his “Backpack” sent home over the summer. He actually seems to enjoy doing the “homework.” Let’s hope he still enjoys it once school starts and he gets the real thing!
 
Thank you EVERYONE for keeping Simon in your prayers. He still needs them! Life is still pretty tough for our little guy, but he's hanging in there! He tries really hard!

[fiddlegrin]

Thanks for the update Frank.
I am glad to hear that the therapies are going so well.

I will continue to lift up Simon in my thoughts and prayers.

[tobacmon]

Just saw this Frank--Prayers sent for Simon & your family. I hope & pray all will work out for the entire family.