Thursday, June 18, 2009

We Did It!

We are all done with the shots of ACTH! It is amazing how in the beginning it seemed like we were never going to get through this, and here we are 9 weeks later and No more shots! Kylie you are absolutely a star! You have been through so much in your 7 1/2 months of life...as daddy says "you are our little hero." We love you so much honey...you have definitely shined your bright smile upon us and helped us get through this :)

The first couple weeks were definitely a very scary time for us, and we just didn't know how we were ever going to get through it all. Every time you had a seizure it broke our heart to see you little body going through something so scary, something that doctors can't explain, something that we can't prepare you for and explain to you because you are so small. All we could/can do is love you and pray that you will be healed.

The effects of this medicine are unpleasant to say the least...much more serious than we ever knew or imagined (it can take the life of a child or help save it). The fussy times were just insane...I think the warning should be "crazy and inconsolable," fussy is an understatement. Our poor baby was just terrified during those moments (you could just see it in her eyes), and there was nothing we could do to comfort her. All we could do was just hold her and love her and let her know that we were there for her no matter what...we were in this together. It's just something no parent should ever have to go through. We are still hoping for the nights when she can begin sleeping through the night..for her sake and ours :) The tolerable effects of the meds were, weight gain, puffiness, and acne. She is still a doll and the sweetest, most beautiful baby in the world! How could anyone not love this face!

Before and After ACTH

It is still very surreal to think about what we have gone through and about how I will no longer have to draw up her meds and get them ready, and have a sticking station set up in the kitchen. It had been part of our routine for what seemed like forever, but now it is behind us (boy did that go fast!). The pic below was taken today, just before her last shot.

It is our prayer that Kylie is healed and this chapter in our life is closed. All of this has definitely made us stronger, and definitely put our faith to the test. Times like these make us realize how small we are and how everything is out of our hands, but in the best hands of all, God's. With that said, we are enjoying every moment we have, and taking things as they come...just gotta keep on moving forward and truly live life. God Bless!

3 comments:

Anonymous said...

Woo-hoo!!! Congrats,Kylie!! This will seem like a new day... to get up and no shot. I know Mom and Dad feel like doing cartwheels!!

You'll remain in my thoughts and prayers as you move forward.

Barb

Jonathan said...

It does feel weird, huh. So much time & energy & emotion was invested in those shots...and then suddenly it's like the house is all quiet again.

Thank you SO much for your super-sweet-make-me-sappy comment! Really truly...

Even though Trevy is seizure-y now...I still remember what it felt like when he wasn't. The fears...the joys...the sadness for others...it's so bizarre. Ya know...

When I first started my blog...a mom who over time has become an amazing friend...told me in a comment...

"some kids make it out unscathed"

And she's right! And it's my prayer that that is exactly Kylie's story! And it's my desire that if it is...you'll share it joyfully! And know that there are parents out in the great big out there that understand & celebrate with & for you!

Oh...and even though she was right that some kids make it through unscathed...I think she'd agree with me that mommy & daddy's hearts may not. I really believe that having a diagnosis like IS radically changes you. And that's okay. Because I think everything has a Purpose...ya know...

Anyway...I'm rambling on...sorry hon. Mostly I just want you to know you are loved & part of a family!

...danielle

celinaricardo said...

God Bless her!

 

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