Saturday, March 8, 2008

Sorry No Update Yesterday

We wanted to post some pictures but had to go to Jessica's parents' hotel to get access to blogger. That's why we waited until this morning to post. So.....

I (Jessica) got a great treat yesterday morning. Kent had spent the night at the hospital with Julianne. I'd been kinda bummed that morning because I hadn't seen the big smile that I always get from Julianne at home when I go to her crib and say "Good Morning!" Well, I walked into Julianne's hospital room and said "Good Morning!" Much to my delight I got a huge morning smile from my little pumpkin!

We are happy to report that Julianne's neurological symptoms seem to be greatly improved. She will look to the right now. She's tracking objects much better. Really just seeming more like herself. We're getting lots of smiles and dimples and even an "out loud" laugh! She's not as quick to look to the right as she used to be, but the Neurologist said that could just be because she's just not seeing as good on that side right now. We think her looking to the right has improved even more just since yesterday. Julianne is still doing the lip smacking and tongue thrusting. We're still not sure why.

During the last few days Julianne has had a few episodes of SVT (where her heart rate shoots up to 240 or sometimes higher). She's quickly broken them herself and gone back to normal in about a minute. They've increased her Amidodorone to 70 MG for 4 doses, just as a "loading dose." After the 4 doses she'll be on 35 MG which is higher than she was on before. This should take care of the SVT issues.

Julianne's been pretty gaggy/vomitty last night and this morning. We're thinking its her old friend reflux, but they were going to talk about it in rounds this morning. So maybe we'll have a solution later. For right now, we're just keeping her sitting up or holding her up on our shoulder.

The word is that Julianne's surgery will be some time next week if all goes as planned. Nothing is confirmed yet. We suspect we won't know anything until next week.

Julianne completed her 24 hours of EEG testing yesterday evening. It revealed NO SEIZURES! We were pretty happy about that. We took a picture of Julianne with the EEG leads on her in case you've never seen it. We'd never seen it before and it wasn't nearly as scary looking as we thought it would be. We called it her new hair-do!

Once Julianne started "waking up" and being more herself yesterday morning she was moving her head around so much that she knocked some leads off. The EEG lady came and wrapped Julianne's head to keep the leads in place. Holding her stuffed snake Julianne looked like our little snake charmer!

Last night after dinner we got to see our little pumpkin with no EEG leads. It was nice to see her head again, although it was very crusty, lol.

Finally, here is a picture of Julianne when we took her for a walk the other day. She was mesmerized by the glass doors.

Thank you for your continued prayers and encouragement. Yesterday was the best day Julianne has had in a quite a while and we are SO THANKFUL for that!!! We pray that her recovery will continue in this manner and that her surgery will go smoothly. We also pray that Julianne's heart function will improve if not now, then after surgery. The diminished function remains an issue for her. Thank you for checking in! We'll try to be more timely in posting. :)


Anonymous said...

Your little snake charmer could charm anyone, she looks so beautiful.
Even with wires on her head she is still a beauty!

Thank God for bringing back her smiles and laughs it such good news to hear and good for the soul.

Thank you for the pictures they were are so cute!

I will continue to pray for Julianne's improvement and that God continues to lift you all during this stressful time.

Please give Julianne a kiss for me on her chubby little cheeks:)

Love to all of you
Aunt\Great Aunt Suzette

Anonymous said...

So glad that Julianne had a better day. The pictures are so cute!

CNN had a story this morning about a little girl, Annabel Butcher, who has the same heart condition. She was born in January and had surgery at the Medical University of South Carolina (I think that's the name they said). Interesting that we're hearing more about it just now.

I am still praying every day for you and Julianne.


Anonymous said...

We are thrilled to hear that Julianne had a much better day yeterday. She looks soooo adorable in those pictures....She's got a bunch of career choices in the future, doctor, nurse, snake charmer!!

We will continue to pray that she improves more and more each day and gets back home real soon!!

We love you all....

A. Stac

Anonymous said...

Y'all try to get some much needed rest while things are so much improved. Then you'll be ready to face the surgery next week! Julianne does look like her beautiful, cheerful self in these newest pics. Thanks so much for sharing. We continue in prayer,
paul and sherry z

Anonymous said...

How wonderul she looks great !!
God Bless you all !!!

Love Aunt Naomi

Anonymous said...

It is so great to hear that Julianne is doing better! We have not stopped praying for all of you and we are thrilled at what God is doing and how He is taking care of you and Julieanne.

The pictures are adorable! She is so beautiful!

Love -

Leanne Cole

Anonymous said...

What wonderful news and answers to many prayers. She looks beautiful, even the "new hair do"! We will continue to pray for you all. We so appreciate the updates. I have friends at work who are praying for you all and have come to know Julianne through the blog, and ask about her often. May God continue to hold you in HIS loving arms and give you comfort.

God bless,
M White

Anonymous said...

We are so greatful for answered prayer and big smiles! You must be so thrilled that she is more like herself again. We will continue to pray that all will go smoothly this week, and for normal function of her heart.

Love, Judy & Neal H.

matt said...

Great news! Hopefully continued improvement up to and after the surgery. Thanks for the pictures -- they really bring us close to the action!

We love you and are praying for you all often.

Matt & Patti Galey

Scott, Rebecca, Wyatt & Annabelle Butcher said...

She is precious...even with the wires! It's sort of Medusa looking but very becoming on her! We are so thankful that there weren't any seizures. Praise God! Julianne continues to be in our do you and Kent.
Glad you got your morning smile!!!
Blessings~ Rebecca

Anonymous said...

i'm sooo glad to know that Julianne is doing better! i have been praying and praying for her!
i think about you guys ALL the time!!
i love the new pics! she is really starting to change in her looks! i really see a lot of Kent in her now! she's get'n so grown up! pretty soon she'll be running around everywhere!
Hope today is as good or better as yesterday, and as always, you guys are in my prayers! love ya'll!

Anonymous said...

Julianne is the cutest little snake charmer ever! Her nurses at Ochsner miss seeing her precious face. The pics ya'll sent were wonderful and we all want leg warmers like hers. You all are in our prayers. Take care!

Your 2 fave Ochsner nurses Jennifer and Anne-Marie