Thursday, March 5, 2009

G-Tube Button Doing Better

As I mentioned in the last post, the g-tube situation is improving (big sigh of relief from daddy and mommy)! She seems to have healed and is no longer in pain and has realized that we're not trying to hurt her. I tell her, "Mommy's going to be very gentle" or "This is going to be easy, ok." So, now sometimes when I'm connecting her feeding tube Julianne tells me, "Easy..." Its funny. We're certainly not in love with this button. Its really more difficult than it needs to be. However, at this point we're not ready to have a doctor remove this button and put a new one it just because we don't like it. Especially since she's just getting over the trauma of the first removal (even though removing this one should be 1,000 times easier). When it breaks though, we will be getting the one we originally wanted!

Well, one year ago today we were sitting in the Cardiac Intensive Care Unit in Boston with a very sick baby girl. Today was the day that Julianne's doctor came in and told us she'd had a stroke. When he first told us he did not know what areas of the body the stroke affected. We were all under the same assumption that the stroke was causing her to be stuck looking to the left and causing some other Neurological issues. Kent and I talk about how when we heard the word "stroke" we never imagined Julianne would be doing the things she's doing now. Of course we know now that stroke could only affect her vision (a field block, not an astigmatism like she has). Below are two videos. One taken a year ago today and one taken last week. What a difference. God has given us a miracle in this sweet girl and I know we will never be able to adequately express our thanks to Him for Julianne and all He's done for her!

One Year Ago - spending a few more moments with Julianne before she headed off for her MRI

Present - Yelling for Laura and talking about cows and horses

**Please be sure to check out the post below regarding the Baton Rouge Heart Walk**


The Butcher Family said...

Oh my goodness! Julianne is a HOOT! What a smart little girl! LOVE watching her on video! Wyatt wants to watch her over and over and over again...I think he's rather attached to your little heart girl, too!

Love y'all~ Rebecca

Anonymous said...

Did Aunt Laura come running when Julianne called for her? How cute! She HAS come a long way. We can't wait to see you all. Hope it won't be to long. Love you all.

Anonymous said...

I'm laughing out loud! She is too cute (and smart!)! Glad things are going better with the new tube. Take care.

With love,
Meredith L.

jan tompkins said...

What a doll baby! I so enjoy checking in on your "heart" babe. She is quite the little talker, even in the hospital. What a miracle.
Found you on Annabelle's blog.

Kristy said...

She is so funny! The kids will love watching that...I'll have to remember to show them if I can find time to be on the computer while they aren't snoozing.

Love you guys!

Anonymous said...

Praise God! So amazing to see a side by side video of then and now. What a testimony, the work of God's hand! We stand in awe and thank him every day.
Julianne has been making a request for particular songs she wants her mommy to sing. Lately, the one she requests most is asked for by saying "Here am, here am !" The song she is refering to is by a new group called Downhere the song title: Here I Am
She especially wants to hear the

Here I am, Lord send me,
All of my life, I make an offering,
Here I am, Lord send me,
Somehow my story, Is part of your plan,
Here I am

All of this info, to say:

Julianne does not yet know this, but as she sings " Lord send me " HE ALREADY HAS! Everyday, through her life and her story his kingdom is growing and God is glorified!

March 9, 2009 1:29 PM

Rachel said...

She is just simply amazing. That is all I can say!

Sara D. said...

I have just found your blog on a daughter also has a feeding tube (which she received in the NICU, she and her twin were micro preemies) and had two strokes while in the NICU. Wow. I haven't read much of your blog, but know we have much in common. Libby (our daughter) has only vision issues as a result of her strokes, though the neurologists told us she would have much greater issues! She is also about to be done with her G-tube, thank the Lord, after almost 4 years with it!! Hang in there!