Thursday, July 29, 2010

our life

I have put off giving an update until I could have a positive attitude in writing it. This is not it!!! I wish this email was filled with positive things but sadly I am having a tough time not letting the bad stuff over shadow the good. This journey has been among the toughest we have faced. Abe screams pretty much non-stop except for the brief moments when he smiles.
His seizures are really bad but the neurologist has decided to wait until his cast comes off to see how much of it is caused from his discomfort. When we walked in the neurologist pulling Abe in the wagon & the doctor & nurses all go oh no a spica cast we knew they felt our pain. When he screams & has seizures there is no holding him & comforting him. It's not easy to hold him & brings him little comfort.
The stress level in our home is at it's highest point that it has been in a long time. Even Michala is not able to get her usual 2 hours because Abe keeps her up. It's very sad!
We went to his ortho appt. I was expecting him to say come back next week & we will get the cast off. Instead after taking the xray his bones are still side by side. They are not even lined up to heal. He said to come back in 3 weeks. Three more weeks of this. The surgeon said he loves surgery & loves helping children but he hates spica cast. He said they are a pain to put on, a pain for the children & a even bigger pain for the parents. Oh good words of encouragement there!
As you can see the spica cast & I are having some real issues as of late. I HATE the thing!!! It's nasty beyond words.
Michala's neuro appt went good. We increased her lamictal to see if we could help cut down on the 2 hard seizures she is having each day. He also put her on a diet of a McDonald's hamburger each day along with boost. Her meds along with the chemo meds from the past have definitely made her weight a struggle.
Mary Elizabeth is being patient with me. Accepting my love when there is time. Smiling her sweet smile to remind me that this is only for a brief time even though it feels like and eternity.
Marlee Anne is probably having the hardest time of all. She wants so badly to help Abe. Her tender heart hurts for him too.
Mike has been up most every night, worked the next day & still come home patient with me. He understands my exhaustion & does all he can to help.
So in a nutshell life is not good right now. It's a complete struggle. We try our best to take in the brief moments of peace & goodness to get us through this. Your prayers are much needed & appreciated!!! Thank you!!!
PS. too tired to proof it!!!

1 comment:

Denise said...

I just want to say you are great parents!! I am on one of the yahoo groups that you are in and I read your incredible story. I have been praying for your family as I know the power of prayer is a powerful thing! Even from folks that you don't know. You are a brave soul and to keep blogging to let people know how you guys are doing is even braver!! My prayers are with you and your family.

Denise in WA