Sunday, September 7, 2008

Back Home

Well, we are back home after evacuating for Hurricane Gustav. As you may have noticed, my last posting attempt did not work. It turned out that Gustav hit Zachary (where we evacuated) harder than our home! My parents didn't have power until yesterday. Thankfully, they had a generator so they could run the fridge, fans and lamps. My grandparents got power back the day after the storm so we slept over there. Kent came home on Wednesday. I'd had some of Julianne's tube feeding supplies shipped to Zachary as we were running low and I didn't want to be stuck without them if the hurricane came. Well, needless to say, that delivery was delayed. So, Julianne, and I stayed in Zachary until yesterday. Here are some pictures of Julianne "hunkered down" on the day Gustav hit:

When the power went out we entertained ourselves partly by listening to the radio. Julianne enjoyed it, as well. The girl LOVES country music (much to daddy's dismay). Try to ignore the song (its kind of lame) and just check out her smooth dance moves:

With the power out and no where to wash diapers, we temporarily went back to disposables. I'd bought some just in case, so that was good. Unfortunately, we did not bring the pack n'play with us (my parents have a crib) for a "just in case" moment. So, when we moved over to my grandparents house Julianne had to sleep in her infant travel bed. She usually sleeps with her feet sticking out through the slats of her crib and when I walked in to check on Julianne as she was going to sleep in the travel bed I saw that she had her feet up on the wall, scratching it with her toenails! I guess she thought if she couldn't put her feet through the side, she'd just put them over it!

Julianne has a very busy week coming up. Tomorrow she has the first of her Synagis shots. These are the monthly shots she recieves from September to March to help protect her from RSV. Tuesday she has a gastric emptying study and physical therapy. Wednesday her special instructor therapist is coming to our house. Thursday, she has occupational therapy and Friday, the vision services therapist is coming out. Hopefully, she'll be having a birthday party on Saturday. I guess that depends on what hurricane Ike ends up doing. We'll post an update later this week about whether or not the party will have to be rescheduled.

Julianne is learning new things everyday. Its just amazing to us the things that she can do! Just this morning I was carrying her out to the car and we heard a dog barking. She looked at me and said, "Daw," "Daw" that's "dog" in Julianne language. She is continually progressing!

Julianne's reflux does seem to be rearing its ugly head again. Julianne normally can't vomit anything! Her Nissen fundoplication surgery made that "impossible." Well, its possible and its happening. She typically gags and retches 6-7 times a day with no vomiting. Now, she's still retching 6-7 times a day but vomiting 1-2 times. She's not vomiting a whole lot, but its enough to make us concerned. I spoke with her doctor right before we evacuated and he said that her upper G.I. showed that the Nissen looks like its coming loose. That's a bummer... He said that usually they don't come loose this soon. Julianne is having the gastric emptying study on Tuesday and then after that we'll talk about possibly tightening the Nissen. I'm not sure what that entails yet, but I'm hoping that it is nothing major. We'll make that decision when we have more information.

Thanks for checking in on us. I hope you all faired well in the storm and hope that we will not be hit by another one at the end of the week. :) Thank you, as always for your prayers. Please keep Julianne in your prayers as she has her study on Tuesday and as we face the ongoing gastrointestial issues.


Anonymous said...

I'm so glad everyone made it through ok!!! The video had me crack'n up!!! She is so adorable!!!
U guys will be in my prayers with all the up coming events!!
Sorry we missed each other when u were in town!! Miss y'all!!!

katie said...

Julianne is adorable! I loved the dancing, and I especially loved her leg-warmer-covered legs up on the wall trying to go to sleep like "normal"....ya'll are doing a wonderful job and despite everything she's been through she is thriving and growing! We love you and are praying for you!

Anonymous said...

I just love those crazy socks!!! She looks so cute in her pictures. I remember evacuating to Zachary when Brant was just about her age and having a blast even though the power was out... : )

We will keep all of you in our prayers as she goes through all her testing this week. Hopefully, the b-day will go on as planned, but we might be hitting the streets again... : (

Take care and see you soon!!


A. Stac

Anonymous said...

You can all evacuate to Memphis and have her party here!!!

Love NSG Aunt Sarah

Anonymous said...

Julianne, you are so sweet ! Nothing phases you ! You have been through so much in this first year of life. Your even happy in your little white under shirt, 86 degrees inside, sticking to Grammie.I am so glad I had not returned that travel bed I bought for you before you were born. The "box" was your favorite place to be at the end of a hot sweaty day. I know your happy to be back home in your own little crib. WE thank God for sheltering us in saftey through the storm and for the Lord's complete care Of Julianne's Great Grandpa and Grandma. He placed them in a new home, here in Zachary, sold their Metairie house before the storm,gave them a place to be with family during the storm,then immediattely returned their electricity after the storm so that,then,they could offer to their great grandchild and family a cool place of refuge. The words of a familiar hymn come to mind: How Great Thou Art By Stuart K. Hine
"Then sings my soul,my saviour God to thee; How great thou art! How great thou art! "
"Then sings my soul,my saviour God to thee; How great thou art! How great thou art! "

Love, Grammie

Anonymous said...

oh I forgot to mention the video is so funny! I believe she has a good beat going. Did you hear Kent's comment about Julianne and country music ? " Kent says I believe I died a little today." Then Julianne reaches back grabs his chin as if to say " come on Dadda let's get down" Ha! Ha! I laughed so hard. Thank you for sharing that with us! Love to you three! Grammie

Anonymous said...

Love that cutie little sweaty baby!

The Butcher Family said...

Okay...we have now watched Julianne rock out twice & Wyatt is just in love with her! She is hysterical...sorry, Kent, for the choice of music.
We will keep you close in prayer this week & hope she has a WONDERFUL 1st birthday!!!
Heart hugs~ Rebecca