Medical Update:
We had Oliver's lab work done on Tuesday and it came back within the normal range with the exception of the Co2 which was low. His level was 21 (26 and above is normal). We'll be giving him potassium to balance out this electrolyte imbalance.
Yesterday Oliver had 10 seizures. It wasn't good. He ended the night with 3 seizures all within 30 minutes or so. I am convinced that some of those were spasms and those are the really troubling kind. The spasms are thought to be much more detrimental to development than the complex partial seizures. Without an EEG or an expert it is hard to tell the difference sometimes. I know at least 3 yesterday clearly were spasms. It is important to differentiate because the treatments are for the 2 types are different.
We have the MRI and EEG scheduled at Duke for April 26th. With the new surge in seizures Boston is wanting us to work more closely with Duke. I am thinking we may have to go in next week for an EEG if things don't improve. We'll see what Dr. Mikati says about all of this. We are awaiting a call from his office.
In other news, yesterday was the first day I met another mom of a kid with TSC. Darlene and her son Landan drove down from Jacksonville to meet us. It was an enormous comfort to be with someone who "got it." They were both a great inspiration to me and I feel so blessed we were able to meet. I hope in the years ahead to make more friendships similar to this one.
As for the diet I have gotten some perspective recently mainly by talking it through with some wise friends. The fact that the diet isn't working has made me feel really sad and like a failure. I've never tried so hard to do anything in my life and never been more disappointed with the results. It took Julie (one of those wise friends who is also a special ed teacher) to remind me that all I can truly control is what I do. Sometimes I can even control the environment. How Oliver responds to what I do and the environment is beyond my control. So even if I do the diet "just right" and make the environment as helpful as possible, I still can't force Oliver to respond, perfectly every time. He is 2 after all! Try to make a person eat something they don't want to- it is impossible, I assure you! I think the other part that is very stressful is second guessing myself. The diet is exploding with such opportunities. It drives me crazy. So here is what I've decided about due to my new perspective on the diet debacle:
- I will continue to do this diet with excellence. I will continue to make the environment as helpful as humanly possible for Oliver while eating/taking meds. I will remain playful and creative despite the disappointments.
- I will acknowledge that I can not make Oliver respond to the diet any certain way. (You have no idea how hard this is for me being the type-A, control freak that I am)
- I will not look backwards and second guess myself. Waste of time. Can't be undone. Focus on my "daily bread."
- I will have courage. I will try again everyday. It feels like running into a brick wall most days, but I will keep trying. Every morning I will suit up and get ready to run, hoping one day I'll bust through the wall or the wall will be removed.
- If we "quit" the diet because it doesn't work, I can rest assured I did ALL I could to make it work. In the end, Oliver and I both have to be in sync with the diet for it to work. It is that simple.
I want to end with something good. I've laid out all these thorns and I want to end with a rose. This song has been a great comfort to me during the past few weeks from Sandra McCracken's CD, Feast or Fallow. The whole CD is awesome, richer with each listen. Listen now if you want. My favorite lyrics from the song "Petition" are:
"You raise your hand to still the storms
That rage inside my head
Revive my heart with gratitude
Love quell my doubt and dread
Give me a sure and rested soul
From every fear relief
The spirit’s power and presence mine
To ever comfort me"
4 comments:
Thank God for your new-found comrade...Darlene. I hope she can bring you some comfort through shared experiences. We keep praying for you and want nothing but good days ahead for you. But, may you also be given continued strength for whatever you face. Love you....Claudia and Brian
Hey guys,
I had no idea until just now reading about your latest storms. My prayers and thoughts are with you and little Oliver as you take each day at a time with him. I know your faith in the Lord will see you through wherever this storm takes you. We just brought our first baby boy into the world this past December and my heart truly goes out to any parent who has to watch their child go through something like this. Know that you are loved and prayed for and hopes and prayers for good things in your future are certainly being lifted!
Sincerely,
Janah Best Herring
Thank you sharing. I pray that you all find relief and that the tests come soon, with easy hookups for Oliver, peace of heart for you....then answers &solutions.
As I write this it is from my 3yr old son's hospital bedside during a week long VEEG. TSC....the Maybe Disease we call it.
May Oliver receive reprieve from those nasty seizure monsters.
All my best to you & your little man.
We are continuing to pray for strength and endurance for you all to get through these tough times! Faison Sutton
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