Update on my Step-Son, Simon

[tx_tuff]

Here is the org thread with all the details on what happened (for those who don't know)
Step-Son having surgery

Update:
August 15, Saturday

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!

[Cypress]

Frank, I am very sorry to hear this. Your family is in our prayers and thoughts.

[cp478]

i really hate to hear this news. i am just glad they are at least better than they were.
Me and my family (especially my 8 yr old son Bryce) haven't stopped thinking and praying for Simon and your family.

please keep us posted

[tx_tuff]

Thanks guys, he is so much better then before, we just had our hopes up for them being 100% gone.

By the way I'm on vacation this week from work, he is playing the Wii right now

[holmes711]

It breaks my heart to see a child sick, buts it's great parents like you Frank, that make all the difference to them. Keep up the great job your doing and be strong. God bless you and your family Frank, were praying for you all.

[edogg]

Frank, My prayers are with you and your family. Hang in there.

[mrreindeer]

Go TEAM SIMON Go!

Glad to hear he's doing better! Continued thoughts & prayers coming in TEAM SIMON's direction!

[bdw1984]

as always thoughts and prayers with you and your family...

[tx_tuff]

Anybody who has ever started a thread in this section will agree with me, I can never give you guys enough props!!!

[Cigary]

Originally Posted by holmes711

It breaks my heart to see a child sick, buts it's great parents like you Frank, that make all the difference to them. Keep up the great job your doing and be strong. God bless you and your family Frank, were praying for you all.

Ditto these thoughts as well, Frank. Having raised my kids who are in their late 20's I can remember when they were sick or had health concerns,,,you'd gladly put yourself in their place and hope your step son continues to progress.

[Tarks]

Glad to hear that there has been improvement in Simon. He is moving in the right direction and that's all that matters right now. My thoughts are with you and your family.

[MrMayorga]

Simon has been in my prayers since his surgery and will continue to be there til the day I die. Glad to hear that the seizures have lessened in duration and frequency. Maybe the surgery or thoughts and prayers or both are contributing to his improvement. God Bless him and your entire family.

[SMOKE20]

Frank we are all here for you. He is in our prayers

[tx_tuff]

A new update as of today, Monday Sept 21st.

September 21, Monday


Simon had 4 month post-surgery check up with his neurologist, Dr. Von Allmen, today. They are going to schedule another 23 hour video EEG in the EMU. They will monitor him and see how many seizures he's actually having and how severe they are. Simon had to give blood so they could check his levels--he didn't like that AT ALL! He is still traumatized from all the IV's that went bad in May!

Dr. V. increased his Keppra dose and turned up his VNS for now. After the EEG, she'll look at adjusting his meds further. Hopefully that will take care of the seizures! (He's still having those short 5 second ones every day).

We check in with Dr. Baumgartner on Thursday for HIS 4 month follow-up. Simon is still going to PT, OT, and Speech Therapy weekly. He has a really positive attitude about school (thank God for that!) but it is still pretty difficult for him. Please keep praying for our little guy!

[Plop007]

My family and my friends will be praying for him.