Team Teydon update!

I've been thinking that I need to update the blog and keep forgetting so here it finally is! Life is getting back to normal, probably why I haven't posted in awhile. Teydon had been doing really good, especially since Feb. 13. Still having good and some bad days, but the bad days are atill manageable and a lot better than in January. He will go 1-2 days without having any seizures at all, night or day! Other days he'll have 1 grand mal or he has started to have drop and tonic seizures (arms and legs go stiff) again during the day but he still only has 1 or 2 of those and they don't last nearly as long as they have in the past. Some days he is more emotional, moody than others but for the most part we have seen a lot more of Teydon's true personality! We are loving having him back! There are some things he is still struggling with; (they are much much better but still not 100%) balance, thinking, learning, focus, and comprehending. He may need some therapy, extra help we're looking into it.

 We're not sure if it's his age or if it's because his body still doesn't feel the greatest, he doesn't really like to play aggressively like wrestling, being tickled, or touched he says it hurts. He will let me give him kisses so I'll take it! I'm sure a lot of it is his body still adjusting to everything and could very well be more sensitive to certain things. We just keep being patient and having to change the way we do some things with him.

We have started up homeschooling again, nothing fancy just reading and some math, which he seems to be taking a liking to math. He will work on some math on the starfall app that is 1-2 grade math, I don't know that he fully understands it but at least he's interested. Sometimes we struggle against each other with doing school work so we may be looking into different options for school next year. But for now we are still taking it one day at a time and just loving and enjoying life the best that we can!

Thank you all for your continued prayers, love, and service towards us. None of it goes unnoticed!

Hate this roller coaster ride sometimes

It always comes back and bites me in the butt when I talk about how good Teydon is doing. We can never figure out these seizures, we think we have them under control and then they switch on us, either different types or having them at different times. He had 3 from 5:30-8:30, woke up with an upset stomach, threw up, and then had a seizure at 10 while awake, he took a 3 hr nap and then had another seizure at 3 also while he was awake. Just when it gets bearable and less stressful things change. Today is a bad day. Hard to hold on during hard days, especially when you get use to having good days. We were loving not having to worry about him during the day. Hopefully tomorrow will be a better day. We're nervous that his body is getting used to zonisamide and not working as well, like I was talking about in my last post. Days like today are so hard, is it tomorrow yet? I know you all are and I'm grateful for it but I ask if you will continue to pray for my little guy. Thank you!

Genetic Testing

The doctor called me this mourning with Teydon's genetic test results, they came back clear! Teydon does not have doose syndrome! She said we could go other testing but usually insurance doesn't pay for those. We don't feel that there is any other testing we need to do. We are grateful that the results came back clear. Gives us hope that he can still grow out of these seizures. At the same time it would've kinda been nice to have a reason for the seizures, nothing we can do about it.

Seizure update, excluding today, the last couple mornings seizures haven't started until 7:30ish in the morning and he only has 2-3 each morning. He would then sleep until 10:30 so we've been having some late mornings. This morning he was awake for the day at 7:30 so he didn't have any seizures last night! Wahoo! Now if I can just get him to sleep through the night without having bad dreams or getting cold we'll be good! We are thinking as long as he gets to bed early and sleeps fairly well we might start getting him up at 7:30 and hopefully skip seizures all together! It's hard to have a set schedule when his seizures keep changing all the time, we just go about our day one minute at a time lol.

I'm very grateful for the change we have seen in Teydon, so much better than he was, it was scary there for awhile. At the same time it's hard to get super excited about it cause he's done this before has been good for 1-2 weeks and then it's like his body builds up an immunity to the medications and they stop working and seizures start up again. It's a roller coaster ride that's not very fun.  We just take it one day at a time and hope for the best! Today is a good day!! Thank you all again for your prayers and thoughts towards us and Tough Teydon!

Better but not great

I knew I shouldn't havr bragged about Teydon not having any seizures, seems like it always back fires when we talk about how good he's doing. He's not having a lot but is still having 1-3, which is so much better than 17 and we've seen major improvements on getting his personality back so I am super grateful that things are better. Now if we can just get them to stop completely and not come back it'll be great. We are going to increase his zonisamide again and hopefully that will take care of these last few.
 One of the seizures he had last night was weird, he was sitting up while convulsing, everytime I laid him back down he would try to sit back up. After it was over he was wide eyed and acting like he was wide awake but was staring off at the same time. If I wasn't used to grand mals it would've been kinda freaky, though it was still a little weird. Dan said he did that with him over the weekend. Not sure what's going on with those.
A happy note Teydon and Dan went skiing last night with ward ski night. Teydon did really good, it was rough at first he was being stubborn and wouldn't even try but with some coaxing and putting the tether thingy (I'm a boarder so don't now ski stuff lol) on the front of the skis, he was a pro. It was so good to see him be capable of doing it, a couple weeks ago it wasn't even a possibility. So grateful for little improvements!!

Wahoo

Great news!! Teydon didn't have any grand mals last night!!! Wahoo! Happy dance!! He did have 4-6 tonic seizures, arms and legs would go stiff but they only lasted 10 seconds! Thank you, thank you for all of your prayers! They are being answered!! We are hoping it continues but still taking it one day at a time. We are very grateful for the good days we get! We have also been able to see more of our Teydon's personality again! We've missed it so much! Teydon also is not having any day time seizures, he doesn't have to wear his helmet anymore atleast when we know he's having a good day. We continue to hope and pray things continue to go good.

Another challenge that we've over come is taking meds, his new meds are in pill form and taking 5 now. At first we were opening them up and dumping the medication on a spoonful of yogurt which worked when we only had one pill, once it increased it was hard to get him to take it, we tried mixing it a couple different ways but it was a constant fight, especially when he was on lorazepam it was horrible! We had to pretty much force all of his meds down, poor guy hope he doesn't remember very much of that! But now we have him swallowing all 5 pills like a big boy! It took me forever to be able to swallow pills, my mom jokes Teydon is doing it 10 years earlier than his mom. I'm very glad he didn't get that trait of mine or life would be pretty miserable for him. We are very proud of him! It's so cute, he will smile once he finally gets it swallowed, thinks he's pretty cool that he can swallow pills! He tells Boden all about it! I think it's pretty cool he can do it too!

January was a really really really hard, challenging month. It was a bad nightmare that hopefully we never have to do again! But we held on through the storm, not by ourselves but with the help of so many people holding us up! I would not have been able to make it through this without my amazing husband, super mom, awesome dad and step mom, our amazing ward family and bishopric, family members, neighbors, and friends! We will never be able to repay you all for your service to us! My heart is very full of love and gratitude for everyone in our lives! I know it's not a lot but THANK YOU for everything! I owe all of my thanks to my Heavenly Father and my savior Jesus Christ, they have blessed me with strength, hope, happiness, and all of you! So grateful for my knowledge of them in my life!

Ups and downs

We're on a roller coaster ride right now having good nights and bad nights. Every other day is a good day, Monday night he only had 2 seizures, last night he had 7. They didn't start until 330 so at least we were able to sleep until then. He was up at 8 am so they are not affecting him nearly as bad, lessening them I'm sure helps. I emailed his doctor to see if we should continue to increase zonisamide, we will see what she says.
We have been able to see more of our Teydon the last couple days. We even celebrated his 6th birthday on Monday, he got spoiled and we had a lot of fun having a little party, celebrating with grandparents. We are hopeful that the results we are seeing are from his new meds and hope it continues to work.