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! Wow...it's been a while. Here's what's happened since.
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
Such a beautiful little lady
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!