Monday, October 13, 2008

Back in Detroit...

We are back in Detroit for the MRI and AMT PET scan. We had about an hour delay at the airport and checked in to the Ronald McDonald House last night at around 7pm. Sophie was her usual self on the plane. Loud and obnoxious (continually kicking and pushing on the seat in front of her). She is strong. She locks those knees and it is hard to hold her legs down. But about fifteen minutes after takeoff, she was fast asleep. Then thirty minutes prior to landing, the pilot comes on over the loudspeaker and wakes her up. Same scenario every time.

The room we are staying in is rather nice. Newly remodeled with a sleep number bed. Though, we haven't quite figured out how to use it yet. Sophie had an absolutely horrible night. She woke up numerous times. At one point, her seizures were so bad that after each seizure she would scream out at the top of her lungs...like she was in horrible pain. Tears were streaming down her face. Her body kept jerking. It was heartbreaking. Surgery could stop this. I want this so bad like nothing else I have ever wanted before. I pray to God that seizure freedom is in the path that lays before Sophie. That surgery will take us down that path.

"But in the end who truly knows the path these children will forge. No one. Well, maybe One person. But us, their parents, all we know is that we love our children. Regardless. We face what ever comes our way, their way and we hit it head on. We pledge to them unconditional love and the promise to not abandon them. To encourage them to be the best they can be. To let them know the world is theirs for the taking as long as they go after it with patience, kindness, gratitude and love for their fellow man and God." ...by Heather Needham.

So now I am sitting in our room. Sophie is sleeping peacefully next to me. The MRI was this morning and everything went well. They left the IV in her hand so that she wouldn't have to get repoked tomorrow. Well, actually, she will still get poked tomorrow. She has to have 2 IVs for the PET scan. One IV to inject the radioactive tracer AMT and sedation. And one IV to draw blood at periodic intervals to check how her body is metabolizing the tracer.

So, hopefully, Sophie will sleep soundly for the next few hours and wake up happy. She definitely needs the rest.

9 comments:

Anonymous said...

Sleep well, Sophie. We love you and you are in our prayers. Hurry home with the answers you need.

Love,

Aunt Barb

Heather said...

Our prayers are with you.Strong and faithful.Sending you prayers for peace and patience during the uncertain moments.Remain hopeful above all."Hope... is the thing with feathers that perches in the soul ~ And sings the tune without words and never stops .... at all."
Emily Dickinson. You know me,I am kind of a quote fanatic,this one seemed fitting.We will keep checking in.

baby trevor's mommy said...

I'm hoping & praying that you get some rest...and find some answers!

((((hugs)))))))

...danielle

Jackson's Blog said...

It was so nice meeting you all today! Thank you for coming to visit Jackson and for the puppy too! He has been playing with it all night. Sophie is so precious. We will keep her in our prayers and have faith she will be a candidate for surgery!

Anonymous said...

The boys and I prayed for Sophie tonight and I have been thinking of you all day. I hope everyone gets a better night of sleep. Good luck tomorrow with the PET scan. Give Sophie a hug for me!

Love,
Erin

Anonymous said...

I pray that Sophie gets her rest and everything goes OK today and you find the answers you are looking for. I can't wait to give Sophie a big hug this weekend.

Love,
Ed

JSmith5780 said...

Hoping you get the answers you are seeking!

Reagan Leigh said...

I hope Sophie had a good night's sleep last night. I know how it is when your entire world revolves around how your child is doing. I pray that the doctors in Detroit are able to come up with a good game plan for stopping her seizures once and for all. Reagan's have been horrible lately, so believe me, I know exactly how you feel. Hang in there...sending prayers your way!
Tera

labonte4 said...

Sophie and family...

We are praying for you guys. Praying for peace, wisdom, and an answer.

Hope all is well.

Rebecca & Ava