Thursday, August 21, 2008

A not so happy anniversary

Don't get me wrong (I don't want to worry anyone) was not a bad day. It just wasn't what we'd hoped for. Today marks one year. A full year since Reagan's seizures began. I certainly did not think we would still be here, still battling them on a daily basis a year later. Just thinking back to that day when we were in the hospital for what Mike thought was something I'd dreamed up (oh how I wish that had been the case)...and they told us Reagan had Infantile Spasms. It still makes me sick to think about it. They told us the worst case scenario...and it was BAD. And we've experienced a lot of the bad, but we've also experienced the good. Through this all we've met some wonderful, caring people and become better parents...we've become better people. I can't say I wouldn't change it because I a heartbeat. But I guess that's why He doesn't let us choose. Today Reagan also turned 17 months old. She's getting to be such a big girl. Seriously...she's really getting heavy. Since starting the Ketogenic diet she's really filled out. She's not that skinny little baby she used to be. That's one area where the seating system will help out. It's so hard for me to carry her around everywhere, all day long. Her therapists came over today to look at the demo and they both agreed that it looks like the best option for her. So now all we have to do it order it. I'm hoping the new seating company we're going through will be able to work with our insurance a little more and lower our out of pocket expenses. We'll see. As for the increase on her medication...I haven't really noticed any difference just yet but last night was the first increased dosage. I'm certainly glad that I haven't seen an increase in her seizures, but I'm sure hoping we'll begin to see a decrease! Please continue to keep her in your prayers as she goes through this transition!!

Here Reagan is in the demo squiggles seat. It's blue but we would be ordering a pink one for her!


Dawson said...

It's been a long year hasn't it. It is my belief that for every day you have to endure this God will reward you with blessings that are beyond comprehension. For those who call upon his name, we are promised that we will never walk alone, nor will we ever endure anything that we can't handle with his help. Though we may not understand it, there is a plan that God has laid out for all of us to follow. Try to remember that in the days ahead. My prayers for Reagan and you and your family continue. My family is praying for yours and we will continue to diligently do so until God has revealed himself in this difficult time. We are praying specifically for a complete stoppage of seizures and a future with zero developmental delays. And never let anybody tell you that that's not possible for these kids. Give her a hug from us and we are certainly enjoying watching her grow.

Monica, James, Connor McGuire said...

I know how difficult those anniversaries are. I just try to keep in mind how much Connor is doing, that when given the very grim scenario by the doctor a year and a half ago they said he may never do. I feel sure that Reagan will continue to make gains!! I think a pink seat for Reagan would be adorable!!!

Forever Greatful to be a Wife and Mommie said...

She looks great in that chair! I know how hard it is to find the right equipment, especially if you are looking through a catalong and not actaully looking at the object face to face!

I hope you see some improvment with the new medication. She will be in my prayers!

Heather said...

How did I miss this post? Great friend I am.This one,of all the ones!!But here I am,telling you both, that in the short time since we "found" each other, I have been blessed to watch your journey.That I know for certain how very lucky Reagan is to have you as her parents. Your love for her.Your steadfast faithfulness to God and His plan,even when it has been difficult to understand and see.It has all been both bitter and sweet to be part of and watch this journey.She is so beautiful and so darling and so happy,despite it all. Our prayers continue for these seizures to cease.Completely.For her miracle to arrive sooner than later.I for one think it's about time.

Kele said...

I have been by before, I know you know that much. However, tonight I came by to hang out a little longer, read a few of your older posts and just get to know you and your Reagan.
She is such a lovely, truly.
The down days are tough, I hate when I have them, they seem to just take over your entire being! But know that you and your family are amazing! And you are such a beautiful mommy, Reagan is a lucky little girl. I will keep you and your family in my prayers.
I can't thank you enough for praying and caring for my Presley and our family.
It is a unconventional way to meet people but I feel so blessed to have met the people I have in this world of blogs.
I will continue to check on you and your sweetie.
Living in 'H' town, where I am from & often visit, makes it a wonderfully likely possibility that we can meet one day soon!! I am thrilled to think of that!

Sophie's Story by Elaine said...

The...not so happy a hard one to handle emotionally. We deal with this day in and day out but when you step back and realize a whole year has gone is difficult. I pray that someday soon we will be celebrating happy anniversaries.