Since you last heard from us:
Julianne's fever and conjunctivitis decided to invite a full body rash to join in on the fun and bought Julianne a trip to the doctor. It pretty much looked like this, except all over her body. I'm not exaggerating when I say it was HEAD TO TOE!
As it turned out she had an Adenovirus. I'd never heard of this. Apparently all 3 things AND her cold symptoms were part of one virus. It took about 2 weeks and a 2nd bout of conjunctivitis to get rid of that thing!
For the 4th of July we went to Jackson, MS to visit my brother and had a nice time there with him and my sister too. No fireworks for us this year but we had a fun visit and, of course, took pictures:
And here is the Stay Puf't marshmallow baby:
Julianne had her very first "menu item" from a restaurant in July! She had a kids ice cream sundae. I can't tell you what a great feeling it was to be able to order something for her. All I can say is our favorite word...Awesome. Don't let the pictures fool you, she does not self feed. She will put a spoon in her mouth one or two times then its back to "mommy do it" or the food doesn't get eaten. Hey, we're just happy she's eating. :)
Like I said, we moved. We have not had much success in the almost 5 months we've been house hunting and decided to rent for now and continue the house hunt. Julianne is enjoying the new place AND, for the first time ever, she sleeps in her own room. The transition was much harder on me than it was on her. She didn't cry and, I don't remember specifically, but I'm sure I did. Julianne loves, loves, loves playing in the hallway with balls. She loves balls in general and sees them everywhere we go...real actual balls, ball shaped planters at the mall, and our waiter's bald head. Yes, that's right, our waiter walked up with a shiny, shaved, bald head and Julianne says, "BALL!!!"
Julianne is still doing awesome with the eating! She has begun to gag a couple of times a day again, but not retch. We're not really sure why. In my last post I'd written that she was taking all of the "food" portions of her feedings by mouth and we were only tube feeding liquids and meds but she wasn't eating as well at that point because she was sick. Well, she's sick again (a cold) and is still eating ALL of the food portions and drinking some of the water. The only thing I've had to cut back on while she's not feeling good this time is the texture we've been adding to her food. Having a cold makes Julianne EXTRA gaggy. The combination of stopped up nose, post nasal drip and an ultra-sensative gag reflex make colds very difficult. Yesterday she couldn't get control of a gagging episode (usually she can get it under control and won't retch) and went into the whole retching ordeal. It kind of worried me a little because her g-tube site bled slightly after the retching. I checked her residuals and it had no blood so her doctor agreed that it was probably just pressure from the retching and the button rubbing the granulation tissue. Julianne has an appointment with her surgeon to have her g-tube button changed on the 17th so she'll probably take care of that for us.
Julianne is really doing well overall. Her last Cardiologist appointment was awesome. Great lab results, great echo, great holter results. No problems. :) In fact, she doesn't go back until DECEMBER! That will likely be her last visit before we head to Boston in the Spring for her Fontan surgery, but we're not going to think about that right now, right? Right. The Neurologist appointment went really well too. She was impressed. Really just the same as the last visit...low tone, we'll keep watching her and checking her every 6 months for now. Julianne's looming appointments include the surgeon on the 17th and G.I. on the 24th.
Julianne is now 22-almost-23 months old:
She now weighs a little over 27 pounds! At 23-ish months Julianne is still loving to read. She always wants to read books and we think that is awesome! I hope her love of reading continues throughout her whole life. Right now she's enjoying literary classics such as, "Pajama Time", "Moo Baa Lalala", "5 Silly Monkeys" and "Sleep Tight Little Bear." Did I mention Julianne is climbing? Yes, she's climbing and between the chances of falling or pulling out her g-tube button as she slides off of the couch on her belly she keeps us busy. She can also count to twelve and knows most of the letters of the alphabet. She LOVES to play with her letters on the window or as Julianne says "Open window? Pway nedders? Nedder A?" Its one of her favorite activities right now.
I think the most exciting bit of news that I have to share is that....drumroll please...
JULIANNE IS WALKING!
We are so excited and Julianne is loving it. She just does laps around the house. She can't stand up without pulling up on furniture, a toy or a hand yet so when she falls she has to crawl back to where she started and pull herself up. She definitely prefers walking over crawling now, but still crawls, I'd say, about 1/3 of the time. I can't help but smile when I see those little legs and chubby little feed come toddling down the hallway! The physical therapist and Neurologist were both really happy that she's walking! You know how we are with the camera around here. Its like a baby reality show...the camera is always rolling. Well, video-ing has been in overdrive as Julianne has learned to walk. I had to narrow it down to 4 walking videos to show you :)
Oh! AND big news about the two friends we mentioned a couple of months ago Sofi and Lindsay are both home and doing great! Thank you, God.