Saturday, August 11, 2012

Living and Loving Life

Elizabeth and her "new ride"
She loves chips!
Elizabeth is doing SO great. She is saying a few words now, she scoots everywhere, we are working with trying to get her to walk in a gait trainer. She recently got a wheelchair, and loves rolling around the house in it.  She is still doing classes at the Discovery Museum and we also started going to Kindermusik classes. So she gets the chance to be around other kids a few days a week. She's gotten more interactive with the other kids and parents. She has become very interested in books lately. She will scoot around holding them and wanting them to be read to her. She has made progress with eating by mouth, she will eat chips, dry cereals, vanilla wafers, mostly things that are crunchy. Its progress so we will take it. She has also slowly started letting us give her liquids (sprite, water, juice) with a straw. We are hopeful that she will continue to catch on and want to eat/drink by mouth more, and eventually one day be rid of the feeding tube.

Elizabeth and her best buddy Zachary at Kidermusik
Everyday I watch her, and I truly feel like I am watching a miracle. Every time she does something new, It melts my heart knowing how lucky we are to witness these things happening, and at the same time I am reminded of the family that made this happen for her and us. I find myself thinking of our donor family more and more. On days when I get frustrated with things, I instantly feel selfish because I know that for me to have these moments another family lost their child and I should never ever take these moments for granted.

Painting with Grammy
Medically Elizabeth is doing well, no issues lung wise (thankfully). Her most recent blood work looked good, she has labs done monthly to check her anti-rejection medication level, IGG, and nutrition levels. Her airway is still a pretty big issue, we have been to Vanberbilt alot over the past few months for airway dilation/stinting. Basically the dilation/stints are not working, and at this point we can either wait it out to see if she grows out of it or grows enough that a more permanent stint can be placed or she gets worse and ends up needing a trach or surgery to try and fix it. I hate the wait and see game! But at this point we don't have a lot of options. The ENT Dr did tell us that if she gets sick, be prepared that it will be pretty scary. Her airway is so small, that any illness will cause her to have difficulty breathing and to be prepared for that.  Not really what I want to hear, but hopefully we can keep her healthy this fall/winter!

Does NOT LOVE wearing the eye patch

Elizabeth had her 1st dentist appointment and another optometry appointment back in July, which went well. She still has to wear a patch over her left eye, we increased it to 6 hours a day to try and correct the laziness in the right eye. She also saw an orthopedic Dr just to follow up with a fractured vertebrae that was found while we were in Texas. She will be followed by them due to the low bone density and hyper-flexabilty of her joints/muscles just to be sure we prevent and avoid injuries.  She will see endocrinology this week. She has not grown much at all in height, so we will be discussing options as far as human growth hormones and testing to see what if anything can be done to help her. Basically being on steroids since 3 months old has really affected her growth, but her genetic condition can also cause some forms of dwarfism, so we just want to figure out for sure what the cause is and how we can move forward.

The biggest news, is that Elizabeth will be starting preschool within the next few weeks at Siskin Children's Institute here in Chattanooga. We are super excited for her and scared at the same time. Of course we are worried about the germs and her getting sick, but the whole point of transplant is so that she will be able to live "as normal as possible" and I really feel being around other kids and learning from them will benefit her.

I LOVE my Izzabug!!
As for the rest of the summer, we are hoping it will be hospital/Dr visit free :) We hope to enjoy the rest of summer before cold and flu season hit. It will defiantly be a challenge this year with her being in preschool. We head back to Vanderbilt in October for Cardiology/ENT follow ups and then to Texas for her 18 month evaluation.

Hoping for continued good health, and witnessing lots of miracles and milestones!!

1 comment:

  1. been awhile since i stayed up to date with elizabeth - can't believe it's over a year - so very happy to see the last update - keep on jetton family keep on!!