Saturday, April 21, 2012

Are you a Bad Woman?

"Are you a bad woman?" Is what Julianne has been asking random strangers lately.  In line at the grocery store, at restaurants, hospitals, you name it, she's on a mission to find the bad women.  Why, you ask....well, one day, we were in the craft section of Wal-Mart and Julianne kept running to the end of the aisle while I was looking at what I needed.  So I told her, "Julianne, if you can't stay right by me you're going to have to get in the buggy." In typical Julianne fashion, she responds, "Why?" So I told her "Because someone could grab you and take you away from me." What does she do next? Again, in typical Julianne fashion, she walks up to a lady near us and says, "If I run away from my mommy are you gonna take me?" The lady had the best response, "YES I WILL! Because I'm a BAD WOMAN." I think Julianne was stunned!! Ha ha! It was pretty funny.  Of course now I find myself explaining to strangers all over Zachary and Baton Rouge that it's not that they look like a bad woman (especially if she happens to ask a man, as she did at a restaurant recently) its because of the Wal-Mart incident. The "bad woman" at Wal-Mart did reveal to Julianne, before she left our aisle, that she was not going to take her.  She had her own grandchildren. :-)

So, it's been a long time since I've posted just a regular update.  We left off with our trip to Disney World in SEPTEMBER!'s been a while.  Here's what's happened since. 

Halloween 2011

Thanksgiving in Forth Worth with Kent's family

Pumpkin Patch in Lafayette

Our last Christmas tree EVER from the "Christmas Forest" (they closed)

Decorating the Christmas tree

Inspired by another heart family friend, making a birthday cake for Jesus...Red Velvet!

Annual visit from Santa! 
We don't do "Santa" on Christmas morning, but he always stops by!
Just being Julianne.  I  mean, why not wear a mask, dressed as a 
Saints cheerleader and carry around two clown fish?
Spreadin' out in her BIG GIRL BED!
Heart Walk 2012

Doing magic tricks in the backyard

Easter 2012

Such a beautiful little lady

Park time!

Enjoying the wonderful weather we've had!

That's the last 6 months in pictures.  Julianne is doing pretty well on the new med.  She hasn't had any breakthroughs that we know of.  She had an appointment this week and things seemed good.  Julianne will go back to the Cardiologist on May 2nd for a Holter monitor. I asked about whether this is a good long term solution or if a pacemaker is still on the horizon.  Julianne's Cardiologist said we need to look at the Holter before he can address that.

In November, Julianne started two new things.  She started seeing an additional therapist and began seeing an Endocrinologist. First the Endocrinologist... You may or may not have noticed that Julianne is pretty short for her age.  She's below the 3rd percentile. This wouldn't be as concerning if she'd always been small for her age, but she hasn't. At 4 years old she was 36 inches.  At 3 years old she was 36 inches.  She used to be in the 50-75th percentile for height.  So, he ordered various labs and the only thing of any significance was her growth hormone levels being in the very bottom of normal.  For now, he wants to just wait and see if she's grown since her appointment in May.  We are really praying that she will grow! Neither of us want to put her through an injection every night for growth hormone therapy. I think if that is recommended, it will be a VERY tough decision.  Please pray that she grows.  I've measured her at home and I think she's grown about 1 inch...I hope that's enough. I will update after her appointment in May. 

The additional therapist is focusing SOLELY on feeding. Its been about 5 months since she started seeing Julianne. She's done REALLY well! Even the therapist has commented that she's made much quicker progress than she expected.  In fact, she is TAKING BITES OF CHEESE PUFFS AND CHEWING THEM!!! CHEWING!! Wow...can't believe I just typed that.  Now, she doesn't just pick up a cheese puff and eat it.  She only does it if we tell her to, or offer some reward, but hey, we'll take it. :-) Is there, perhaps, a light at the end of this tunnel? Or maybe a sandwich? It sure does seem like it.  I'm so so so so thankful for this progress.  We have prayed for and worked toward this for so long. Its just amazing to watch. I know she still has a long way to go and it may be years before she's eating entire meals, but it still makes us really happy. 

That's what's up. We are doing really well, and have no room to complain. We are so grateful for your prayers and love for our family.  It's more than we could ever ask for. Once, during a garage sale we had, a family walked up and I said, "Good Morning, how are y'all today?" The dad responded, "Better than we deserve" (I later found out that they had a "home church" for Vietnamese believers in their house)  His response has stuck with me.  I'm continually blown away by the blessings in our life.  We are so undeserving and unworthy of how God loves us, AND it's even enough to offer us a promise of eternity.  So, how are we doing? I would have to say, much better than we deserve. :-) Thanks for checking in!


Anonymous said...

So happy to hear Julianneis doing so well. God bless you all.
Mary Katherine

Julie Miles said...

Enjoyed the update! Reminds me I'm long overdue to update our blog too. I loved the "bad woman" story. I'm still trying to teach that to Ethan. Apparently he's never met/going to meet a stranger b/c he'll strike up a conversation with anyone!

That's exciting to hear that Julianne's taking bites & chewing! Will be praying for growth before the May appt. Glad to see you're "better than you deserve"! (that's a Dave Ramsey line) So are we!

Anonymous said...

Wonderful blog update Jessica! Praising God for his hand that is so evident in your lives. Thanking God for his merciful intervention in her recent SVT and hospital stay. JULIANNE is so funny she keeps me laughing all the time. I can not take a video with out hearing my own laughter in the video. I am so excited about the cheese puffs too!! She recently finished a therapy session and said "Grammy I did SO GOOD !!! I ate TEN cheese puffs! ! That's too many cheese puffs! ! " and she chuckled. My heart was so happy! Thank you God!


I loved reading and seeing the pics of Julianne's Journey over the past 6 months ....she is such a doll and a blessing. She does have two amazing parents! I will Julianne in prayer for continued strides in good health.
JoNell Quinton

Anonymous said...

Thanks so much for the update and the wonderful pictures!! I'm so thankful for her progress in eating-may little bites grown to BIG bites! May God continue to bless your precious family and us through you!

Jen said...

Long-time reader, first time commenter. My son also has HLHS, but I was posting to tell you about my husband; he recently started having to take growth hormone as the result of a head injury (obviously he's not still growing, but it turns out that adults also need GH for things like maintaining muscle mass). He was soooo nervous about the daily injections, but the needle is really tiny, and he says he can barely feel it. It also comes in a "pen" form so it doesn't look like a scary syringe + needle. Obviously, I hope you guys end up not having to give her GH, but just wanted to let you know that if you do, it's probably won't be as bad as you think!

Anonymous said...

Beautiful pictures...and thank you for the update. No telling how many hearts are warmed by Julianne's innocent little "bad woman" questions. Glad for the little bites of food. I will pray for a good report in May. Love, Jan W

Anonymous said...

So happy that Julianne is doing so well ! Chewing is a great word to hear from you! I will pray for continued progress in chewing and that she continues to grow so no growth meds you all are such wonderful parents and I can see that God put her right where she needed to be not only for her medical needs but her spiritual needs. You are making a faithful path that she will follow as she continues to. Grow I love you all aunt /great Suzette

Anonymous said...

Dear Kent and Jessica,

I have a reminder to check out the blog every so often and every time I stop by... I am blessed beyond words!

Julianne is precious beyond description! How can God pack so much loveliness into such a small form?

Y'all increase my quality of life!

Praise the Lord!