Saturday, November 22, 2008

I'm leavin' on a jet plane..don't know when I'll be back again!

Well it is true! Matthew and I are busily packing our bags. We're scheduled to leave on Wednesday, for St. Paul, MN to the Minnesota epilepsy clinic. Since Matthew's diagnosis of infantile spasms, I've been in communication with Matthew's pediatrician, his neurologist and his early development coordinator in order to get Matthew more specialized care and get these spasms under control. I'd like to see them GONE, but I don't want to get my hopes up. Did I tell you I hate seizures. I REALLY hate them! They are robbers of Matthew's mind. I can just see him already starting to regress. He just looks so spacey with all the medication he's taking. He's now on 3 medications for seizures-too much medicine for one little man! I'm hoping they'll fine tune everything to maximize his medication and minimize the side effects.
And I truly don't know when we'll be home. They told me 2-10 days. The woman that authorizes Matthew's insurance for out of state was so funny when I told her that. She was like; "that's really broad-so how many pairs of underwear to you pack!!" Makes me laugh just thinking about it.
Yes, this means I'll be spending thanksgiving away from my family. I'm not particularly thrilled, but Matthew is way more important than one day. Christmas is coming, and I'd rather be home for that! Besides we've spend a lot of the major holidays at the hospital since Matthew's been born; so it sorta feels right :)

And Matthew turned 6 months on Thursday. I can't believe it! We got Christmas pics taken, but I'm going to get some of just him done when we get home. He's growing so much! I promise to post pictures soon, and I'll try to keep everyone updated on the blog while we're gone.

We'd appreciate your prayers as we embark on this very important journey!

5 comments:

Lisa said...

Oh my goodness! I wish you the best of luck. Please try to keep us posted on what's going on. I hope they can find the right solution for Matthew's IS. If they don't get it right the first time, just remember that it took us four attempts to find something that would work for Elisabeth (Depakote. She had another day with no spasms today...that's 6 days in a row!). Best wishes and fervent prayers coming your way. Travel safe!

Sherri said...

We will be praying for you to find the perfect medication and for a safe trip. I can't imagine how great it feels to be getting closer to the solution!

Michelle said...

We'll be keeping you in our thoughts and prayers and hoping that they find a solution for little Matthew Owen!

Echoes of Mercy said...

Many thoughts & Prayers coming your way....for better medication and for a safe trip...and for your family at home.

Schaechers

Kristen said...

Our thoughts and prayers are with you all!! I'll be looking for your updates. I know you'll be busy though. Just know we're praying fervently!

On a side note....I love LOVE the hat you sent Cayman. She looks so cute in it. I took pictures. I'll send them to you soon. I'm really enjoying the stocking pattern you sent me too. Thank you!! My stockings are going to be so cool thanks to you. :o)

Hugs & Prayers!!