no more weaning

While trying to wean off the vimpat we have sprung a leak. Jayen has been having seizures almost every three days. They are horrible and lasting longer each time. Dr. Frost's office advised us to go back up on the vimpat to 25mg in the morning and 50 mg in the evening. This is nearly back to our original dose. I'm ok with that if it means we get these to stop or even slow to where we were before. This is ridiculous!

Got this from the mom I met in Minnesota - quite fitting!

The Special Mother
by Erma Bombeck
Did you ever wonder how mothers of disabled children were chosen?
...

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"This one gets a daughter.
"This one gets twins.
"This one gets a son.
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

 

I know He doesn't give me more than I can handle, but I often question why I was chosen.

Weaning off Vimpat

Our weaning process is not going well. When we left Dr. Frost's office, he wanted us to start taking Jayen off the Vimpat and Klonopin. We started with the Vimpat by half pill once a day. On the 14th we were 1/2 pill in the morning and full pill at night. Then on Monday the 19th and every proceeding Monday we decrease another 1/2 pill. Jayen's last seizure was on the 13th (the day we were in to see Dr. Frost) but since starting the decrease He has had one on the 18th, 21st, and 24th. I just don't know what to do. Still waiting to talk to the nurse and see if we continue with the decrease. I hate waiting!

Yet another

I'm still waiting to hear back from Dr. Frost's office about Jayen's seizure on Thursday but now I have to update them on the one he had this morning as well.
A horrible night followed by a horrible morning. Brilyn woke up in the middle of the night crying. I went to check on her and she had puked everywhere and was laying in it face down. It was so scary. I screamed and Matt came in to help. We cleaned her up but I was too scared to let her sleep in her bed. So she slept in our room and I slept with one eye open. A little later Jayen woke up screaming, but when we went in to check on him he was fast asleep. I don't know what happened but this morning when he woke up he had another seizure. Thank God we are headed to Minnesota next week. We need to get this figured out!

3 YEARS OLD!

I can't believe my baby boy is 3. Where has the time gone? Yeah I know, it has been spent going to doctor after doctor, occupational therapy, speech therapy, physical therapy, ER visits, public school visits, and appointments galore. It has been the craziest 3 years of my life, but I wouldn't trade you for anything. I love you little man!

Sixth Diastat

It has been two weeks since Jayen's last seizure. I have been waiting for this one. I knew it was coming. This morning Jayen had another seizure. It was similar to what he usually has. I know that he is physically drained when he has seizures but mommy is emotionally drained. I can't wrap my brain around how it would feel to not worry, to not have to wake up in a panic everyday wondering if we/he will have another one. Yes, I said we. I feel a different pain. I feel this helplessness. I know this isn't about me, but I don't know how long I can continue this. Mommy is loosing it!
Jayen's birthday is this weekend and all I wish is for these damn things to go away!