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Reese’s Story

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Latest Journal Update

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After getting a new mask (the first made us think he was sneaking out for horn implants) and machine (it would randomly turn off at night, which was not good), I think bipap will be a very very good thing. R does not fight his new mask and his heart rate has dropped 10-20 beats per minute when he is sleeping at night. The bipap, for as much as I did not want to have it, gives his body the opportunity to really rest at night. I was hoping that would translate into fewer seizures during the day, but it has not. We're seeing more intense seizures that are putting him to sleep more often. Good days are really good. Bad days are really bad and there's not a rhyme or reason to one or the other. 

We saw an allergist this week. He thinks R's rash is contact dermatitis, but because of one lab result that was high he thinks we need to investigate further. He made some recommendations for lotion and cleanser and R had some blood drawn. I have not heard back from the office, but when I look at the lab results, levels look non-concerning. As in true R form, he started with a rash again tonight. I am thankful for the technology of being able to send pictures and notes to our physicians' so these weird things can be documented in his chart. I do try not to do it too much, but I am not quite sure what to worry about.  

I am waiting to hear back from Dr. D to see what suggestions he has up his sleeve for trying to get these seizures under control. I am so disappointed that our EPI bump did not result in better seizure control. We are potentially going to bump one of the meds he is on. He already has extra benzos on board, but I guess his brain has lost a bit of love for them because they're not doing what we want or what they have done in the past. This is just a losing battle, no matter how we look at it. 

Griffin started football. He loves it. LOVES it. He's up early and off to practice just about on his own (with a little reminder from mom to roll out of bed). His games start next week. I anticipate these will be much more exciting games than the flag football games of elementary years. He's winding his summer down doing lots of skateboarding and helping Scott in the garage. I look at him and am amazed at how old he looks. I am not quite ready for that, but I don't really have a choice.

 All is well. We're finding our groove with bipap and hopefully will find some seizure relief. I am crossing my fingers we'll get there sooner than later. 
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Comments

5 Comments

Greta Liubakka
By Greta Liubakka
Much love to you all, Nena. I think of you every day!
Jennifer Green
By Jennifer Green
Prayiung for seizure relief for Reese and for healing of the rash.
Jennifer Green
c.o.l.e.'s prayer team
www.colesfoundation.org/
Marilyn Harju
By Marilyn Harju
I also wish Griffin good luck playing football, etc. It will give you good things to look forward to this fall! You handle whatever happens so gracefully! Love you! Jorj
Marilyn Harju
By Marilyn Harju
Glad to hear that he is sleeping better! Hopefully the seizures will lessen soon! God is helping you to handle everything that is happening today & every day! Trust in him! Love & God's Peace to all of you!
nancy johnson
By Nancy and Rodney
Thanks for your updates, we pray that the fall brings special moments and less seizures for you little guy. Best of luck to G for playing football. That sounds like some fun and exciting moments for your family. Yes, it seems children grow far too fast and mostly when we are not looking, suddenly we say what happened. I know you treasure all your moments with your family. Love and peace, Nancy and Rodney