He's Moving, We're Moving

Thomas is moving!!! He recently received his second dose of Zoledronic Acid (a biphosphonate).  Zole slows down bone resorption, allowing the bone-forming cells time to rebuild normal bone and allowing bone remodeling. He received his first dose at the beginning of February and his second dose mid-June. It's been about a month and I can see HUGE improvements in gross motor skills! Thomas is doing things that normal babies typically do by 3 months. It's a big deal for us though considering that until his trach surgery on April 27th, he had spent half of his life in the hospital and the most of that time struggling to breathe.

Our strong little boy is finally kicking his legs when he's happy, when he's mad, and just to play. Thomas is lifting arms enough that his shoulders are off the ground. He's reaching for and holding on to toys with both hands. Head turning is becoming more common when he sees something he likes and he's trying to find it. His grasp is getting stronger and loves to hold our finger to go to sleep.

Some of the funny things about Thomas:

- He loves to play and bat at Taylor's bright pink and purple necklaces.
- He eats like a hungry dinosaur. They even noted that in Thomas's chart as "hungry dinosaur". Baby food is one of Thomas's favorite things in life. I guess if you go months without taking anything by mouth rice mush and pureed prunes taste amazing.
-Baths are awesome! He enjoys them hot and loves getting his hair washed.
- Typically, a trached baby is silent because they don't get to move air across their vocal chords. However, Tommy has figured it out and loves to hear himself talk. He only does it when he's relaxed, but once he gets a squeak out he'll keep going until he's distracted.
- Thomas goes every where in his diaper. All the time. No matter what. He sweats so much which is typical of severe OI. No one knows why but they all share that odd characteristic. Thomas gets so hot even just laying on a pillow that we always have a fan on him even in an air conditioned room. He goes to church in his diaper, out in public, and probably won't be wearing clothes again until fall.
- Taylor and Thomas have inherited a mommy trait. They both twirl their hair. I have a horrible habit of playing with my hair and both of my kids do it when they're falling asleep. We noticed it in Taylor when she was a baby and she still does it. Thomas has long enough hair and he does it when he's relaxing and going to sleep. It's weird seeing your kids do the exact same things that you do and you wonder how the heck did that get passed on? It's like it was prewired in them.
- Thomas loves to be kissed everywhere and loves getting raspberries. He enjoys his feet being stroked and his favorite way to fall asleep is on mom's chest (if I can manage to get him there without the trach getting accidentally pulled out).
- Thomas is the happiest boy you've ever seen at 3am in the morning. He is sunshine and rainbows and will just smile at you until he goes back to sleep.
- Finally, Tommy  gets to have blue poop every once in awhile. It's like he's a unicorn or something. Every so often he has to have his food dyed blue so we can see if he's eating safely and not aspirating. The whole next day is full bright blue surprises.


WE'RE MOVING!!! Well, at least we thought we were...
Living in a three story house has been very difficult when it comes to regular day to day stuff as a mom. First off, Tommy hasn't slept in his bed ever since February. He hasn't even seen another floor of the house since then. He is stationed to a 3 foot radius in the main room off of the kitchen. That's it. His trach is his airway and therefore he has to supervised CONSTANTLY. I can run upstairs quickly to do laundry but if I hear him beep I have to fly down the stairs to make sure he's ok. We haven't had a real scare since May, but that's because we've gotten better at managing everything and preventing issues with the trach. But back in May Tommy was having so much condensation build up in the tube that he was coughing on it all the time, so we thought we'd take him off the humidity and just use the little filter that's meant for when we're on the go. Terrible and life threatening idea... Tommy's lungs got so dry that his mucus was super thick and clogged the trache and we almost lost him. We were able to switch out the trache quickly and he started breathing again with the help of the vent. That moment will forever be burned into my memory but also reminds me how quickly something could go wrong for Thomas and how someone knowledgeable ALWAYS has to be near.

I would love to be able to have a routine with Taylor and Thomas of how we do our days, play, and get things done. But it is so hard with three floors. Plus, even getting Tommy out of the house is hard because of the steps out of the house. So, we made the decision to put our house on the market and look for a spacious rambler with easy entry! We decided to look up in Davis County to be closer to family. After two failed offers, we found a new planned community in Layton that works with a builder we were impressed with and has a layout that's perfect for what we need. We don't get to start construction until our South Jordan home sells. We did go under contract within a few days of going on the market, but their financing failed so we're back on the market. It's scary to not have any idea when things will happen, but I trust that it will work out. In the meanwhile, we're enjoying staying with Meg and Kent (Shane's parents) in Centerville. It's nice to be able to do things with his siblings and be back in our old stomping grounds from when we were dating and first married.

Staying out of our house while on the market was a decision we made to make buyers feel more comfortable in the home without all of Thomas's equipment and to make it less stressful on Thomas. Getting him out of the house is a ton of work. Unless Shane or his parents are available to be with him, I am with him most of the time. If I'm alone with Thomas and miss T, I am not able to just pack the kids up and go to the store or to the park. It is a lot of work to get all the machines set up for on the go and then into the car. I can't take him in the stroller by myself because I can't take him down the steps without a second set of hands. Also, Thomas gets extremely hot and kinked in his carseat. The trache sits below his chin and the connection to the tubing is hard plastic. His head is also really big for a 7 month old and he doesn't have the strength yet to hold it up. But, his head is also too big for the infant padding insert that is meant for newborns. So his head rolls to the side. It's just stressful for all involved but he does love to get out. Thomas enjoys seeing the trees, the colors, the lights in the hallways of a building, and other kids. It'll get easier, but for now we mostly hang out in our 3 foot radius.

The only day this summer that Thomas has worn clothes. For the Broadbent Family pictures.
He looks like a cute young man!

An awesome benefit of living at Grandma's- unlimited access to cousin fun!