Sunday, June 14, 2009

Detroit Itinerary

Still haven't tried the melatonin. I don't think Reagan wants to...she fell asleep early again last night before I could give it to her. Sleep was better though, with her only waking up once but staying awake for a longer amount of time, maybe that's because Daddy got up with her. She loves her Daddy, she especially loves to sleep on his chest (see picture below). We're still dealing with some tummy issues here. Bowel movements are still causing Reagan a lot of pain. I'm curious to see how this whole switch to soy pans out...when she's actually been milk-free for a reasonable amount of time (without me messing up and giving her something that has milk in it). We're also trying a new probiotic. It's called Florastor Kids. The GI doctor gave us some samples so we're going to give it a try. It's a little different than most probiotics in that it's yeast instead of bacteria. I don't know if that's a good thing or what, but since we haven't seen too much help from the other we'll see. My allergies have been killer today. I have been sneezing almost nonstop all day! I sure hope that's gone by tomorrow. I'm still not completely packed, but hopefully I'll have everything together by morning. Please keep us in your prayers tomorrow as we head out on our journey across the country for answers. I sure hope we get some. I wanted to give everyone a full itinerary for our trip (so you know how to direct your prayers), so here it goes...

Monday June 15th- we leave Houston on Continental at 10:20am (our first flight ever with Reagan) and get to Detroit by 2:23pm. We got 2 out of 3 tickets free through Continental Careforce. They help children get the medical treatment they need by providing free flights for the child and one parent (once a year). It was a huge help in making this trip happen. I decided to go ahead and get a rental car because the taxi cab fares are so steep we'd only have to spend a little more to get our own car for 3 days. We're staying at the International Guest House next door to the hospital. It's similar to the Ronald McDonald House in that it offers reduced rates for families of kids receiving treatment, but it's a little nicer and you're able to make reservations in advance.
Tuesday June 16th- we check in for Reagan's 24hr video EEG at 9:30am. That is an overnight test. They hook her up to all the leads and then monitor seizure activity for a full 24hrs. We have to press a button each time she has a seizure...that's going to get old quick. She's probably going to get irritated of having to lay in the hospital bed 24hrs with junk stuck to her head and our patience may get tested a little. I'm just hoping that maybe we'll see some sort of improvement in her EEG...she hasn't had one since October. It sure would be nice to see less or even better NO hypsarrhythmia!!!!
Wednesday June 17th- after she finishes with the EEG, they will leave the leads on her head and we'll go straight over to have her PET scan done at 1:30pm. She's never had a PET scan before...this is the real specialty of the doctor we're seeing in Detroit. They will sedate her and put some sort of radioactive dye into her and then monitor how her brain metabolizes it. This may give them some sort of insight as to what is at the root of all of her problems (we're hoping). It may also see more clearly if there is in fact a seizure focus in her brain that could potentially be removed by surgery.
Thursday June 18th- 10am we meet with Dr. Chugani for the results. This is going to be the most nerve wracking part of the trip. We're hoping and praying that he'll have some good news for us. Then we leave Detroit on Continental at 3:08pm and get back in Houston at 5:07pm.
I also plan on updating the blog while we are there, so that will be a good way to find out how things are going and the most urgent prayer requests. Thank you all for your support!

12 comments:

Marc said...

We will be thinking of all of you during this - have a safe trip and please keep us posted of how everything is going!

Heather said...

We love you all and will be thinking of you and praying for you the entire week.Kiss that sweet girl.Darling picture with daddy!See ... she sleeps!!

Karen Owens said...

Praying hard!

blogzilly said...

Best of luck. We had the exact same schedule of events two weeks ago. Everything went very smoothly. If you have had EEG's where they attach leads with the compressed air gun and the smelly chemical, you'll be happy to know they do not do that at Detroit.

Tell the nurse you want some limited mobility and she can set the video camera up to give you a small range of motion on the floor, so you can move the bed and let her walk around a little. Helps a lot.

After the 24 hour VEEG, you will take her downstairs and they will actually add a couple of leads, do another 15-20 minute EEG after the material is injected. Then they remove the leads totally (they come off with soap and water) and then they do the PET.

Here's hoping for some good news.

Anonymous said...

If you need anything while you are in Detroit, please mention so. I live on the outskirts of Detroit, and would be happy to help :) Best of luck to you all

Debbie said...

Our thoughts and prayers are with you.


Debbie & Hudson
www.caringbridge.org/visit/hudson

made2bmom said...

Prayers & blessings for you and your family...
Please let us know how thing go as you can.

Jackson's Blog said...

We'll be praying and hoping for a great week! Call me if you need anything!

The Grandma said...

All my thoughts and prayers are with the 3 of you! I am standing in faith that this will provide some answers to our prayers! I love yall! Take care of my baby and rest easy.....Bear and I will take care of the house!! All my love......Grandma

jennifer said...

Good luck, I pray that you finally get some answers as to what is causing Reagan's seizures.

Sophie's Story by Elaine said...

Reagan looks so peaceful sleeping on her daddy's chest. I've been thinking about you all.

Jamie said...

this is AMAZING! oh man! I am excited for you! Oh prayers and prayers lil Reagan gets help for these horrible seizures! Aparently that is the guy to go to! heard alot about him...
(yes, I am backwards reading your blog..lol)