Friday, August 15, 2008

I can't believe its been so long...

I've been waiting to post until I got a video of Julianne doing some of her new tricks, but I keep forgetting. So, I figured I'd go ahead and post and then post the video later. On to the update:

Heart: Looks really good! At her echo on August 1st, Julianne's function actually looked normal! That is great news. She seems to be doing well with the new med, Propranolol. Her blood pressure and oxygen saturations are good as well. Julianne will go back to the cardiologist at the beginning of October.

G.I.: Julianne went to her G.I. doctor the week before last. She since had an upper G.I. (which didn't show any problems) and will have a gastric emptying study some time next week. The G.I. doctor doesn't feel that either of these tests are going to show anything we haven't seen before, but wanted to do them just to rule out any other problems before starting Julianne on a med that will (hopefully) help reduce the gagging. She's still tube fed for all of her nutrition, but we do oral stimulation and "feeding"(less than 1 teaspoon of food) twice a day. Julianne's OT has a plan to implement a protocol developed by a speech therapist to wean a child off of tube feeding. Its a pretty long process. So, we're not expecting immediate results by any means.

Gross Motor: Julianne is sitting up really well. She reaches for toys, she catches herself when she starts to fall and she bends all the way forward. She's rolling from belly to back and back to belly. If she sees a toy she wants she'll roll to it. I even saw her (one time, and one time only) "wiggle" her way, on her belly, about 6 inches to get a ball! Julianne is spending a good bit of time on her belly now. In fact, last night we went into our room to see Julianne in her crib trying to sleep on her belly. It wasn't working so well because her tubing was getting wrapped around her tummy. This week we're really focusing on trying to get Julianne to bear weight on her legs. Its one of the things we've been working on in PT.

General Cuteness: If you hiss at Julianne like a wild cat she'll hiss back at you like a baby cat. Its hilarious! She claps for everything and LOVES to dance! That is what I really want to get a video of! Julianne is also trying to repeat a lot of sounds we make. For example, I'll ask her if she wants to get OUT [of her crib] and she'll respond, "ow." She does that with a lot of words these days...its very cute.

We've been successfully cloth diapering Julianne for 3 1/2 days now. Things are going really well with that.

We're also trying to plan her first birthday party (I CAN'T believe its already time for that). Her party will be on Saturday, September 13th in Metairie, LA. We'd LOVE for any one who'd like to wish Julianne a happy birthday to join us on the 13th! So, if you've been reading this blog (or even if you haven't:) and you want to celebrate with us be on the lookout for party details within the next couple of weeks!

Thank you, as always, for checking in on us, for all of your prayers and for your support and encouragement. Its so very much appreciated.

6 comments:

Allison said...

Good for her! She sounds like she is doing just great! Glad to hear...& can't wait to see the video!

Anonymous said...

She is such a cutie pie!!! I can't believe she's almost a year old. How time flies. We are sooooo thrilled and thankful that she is doing so well.

We'll continue to pray that she gets stronger and stronger each day.

We'll see ya Sunday, oh, yeah, and Saturday.... : )

Luv ya

A. Stac

Anonymous said...

I can't believe that it is time to start planning a birthday party!! Where has the time gone? It sounds like Julianne is doing wonderfully with her new "tricks". These little ones are such a blessing and wonder! We continue to pray for her feeding issues.
God bless,
Melinda

Anonymous said...

Miss Julianne has always excelled in "General Cuteness"!

Glad to hear of the good reports.

Love to all
NSG Aunt Sarah

Anonymous said...

Julianne is doing so well!!

She is such a blessing to all of us!

Jessica and Kent you should be so proud of how far she has come. With your unending faith in God you have both done such a wonderful job of getting her to this point.

Can't wait for her party! Is it a surprise?;)

Love you all,

Aunt\Great Suzette

Anonymous said...

Hi, I just came across your blog and I think we shared a Room at Children's together, in the step down unit. I was in the room right by the nurses station, and my daugther Cassandra (baby girl Tennis) has the first bed near the hall. Were you guys in the back bed near the bathroom/window? I was reading the blog, and then saw how you guys transferred from Children's to New Orleans, and though, hey...that must be them! Sorry to leave a comment so long, but I couldn't find an email or anything else to contact you! Glad to see Julianne is doing well. She is a cutie pie! You can email me if you like at kristen.tennis@verizon.net