Wednesday, December 29, 2010

Can't Complain

Juliana has been great. I am afraid to even say it but it's been 3 weeks off oxygen and we are cold and virus free in our house. I actually brought Juliana out to play in the snow on Monday which she wasn't too impressed by. It was still nice to be able to bundle her up and take her out without any strings attached.

The kids were very pleased with their gifts this christmas. At first rough and tough Juliana wasn't into her new baby dolls but gradually she has been playing with them more and more. She likes to carry them by their leg and toss them into the shopping cart head first. She still prefers playing with her brothers cars, dinosaurs and footballs but Omar is okay with as long as she shares her dolls with him. A baby doll just happened to be on his wish list this year anyway.

Juliana is getting the last of her teeth in which seem to be the worst of them all. She can be very cranky at times which is usually healed by a little motrin. She is still eating well by mouth 3-5 times a day now without much resistance. I have been really focused on trying to get everyone to treat her as a regular kid including her therapists. Although her gut doesn't function the way a regular childs gut would she still behaves the way I would expect any other 2 year old to and refusing to eat is not very uncommon. So now that we know she is physically able to tolerate milk and baby food by mouth without aspirating or gagging there is no excuse for her not to eat. Usually if you let her know your not going to back down she will comply and at times has found that she actually enjoyed the taste of what she was given.

Lately her form of control has been the feeding tube. She likes to pull this out a few times a night (bedtime usually). We believe this is her protesting against bedtime. We have caught her trying to put it back in herself and on one occasion I supervised her as she threaded the tube up her nose and she almost got it half way down. Her fine motor control is not quite perfected yet so I had to step in and finish the job. I think this is when you know that you've had an NG-tube for way to long when the 2 year old can put it in on her own.
We are very hopeful that Juliana will be able to start school in the fall without her backpack. It's hard to imagine my little peanut going to school but really it's the other kids I worry about. Juliana is very tough and doesn't mind pushing people around if they get in her way (just ask lil Omar). If all goes well with surgery I anticipate that she should also be able to come off TPN and IV fluids within the year. Of course only time will tell.

We look forward to taking on 2011 and all of it's scheduled and unscheduled events. It's going to be a pretty busy year with Juliana having surgery this spring, preparing for the start of preschool in the fall and a vacation wedding to attend. I am still hoping to squeeze in a trip to see my Gramma. It's been a long time since I have been out to see her and I would love for her to meet her great grandchildren in person.

Saturday, December 11, 2010

Tuesday, December 7, 2010

Look Ma No Tubes!!!

Juliana has been off oxygen for a full 48 hours now!! Her sats remain in the very high 90's and I am still in disbelief. Unfortunately she's been very cranky with her new tooth coming in but she is enjoying the freedom if being untethered. Feeding is going very well and she is willingly accepting baby foods by mouth. Her pulmonologist and the team in Boston is going to be so excited. I have already emailed our service coordinator and our TPN nurse as I just couldn't wait to share the good news.

She's getting ready to be the cutest flower girl the world has ever seen! Keep up the prayers.

Also please pray for our friend Matisse who is receiving her long awaited transplant today. She's a very deserving little girl who has waited many years to receive this transplant and we are hoping that her body will accept the transplant and she can pull through surgery with as little complications as possible and one day eat like a regular kid.
Juliana Maria was born on July 12, 2008. She is a micro preemie born at 1lb 2oz. 11-1/2 in 23 weeks and 4 days gestational age.