March 2017 Road Trips, Standing, Throwing Up :)

I think about getting on our blog and giving updates often. My goal of doing this weekly has turned into an every couple of months venture. It's been almost two months since our last post. Some days it feels like there is no change. But a lot has changed, though the change is very small from day to day.

MOBILITY


Koby is almost 15 months old now. He continues to roll around from side to side. There's not much coordination in his movement yet, so crawling is still a very lofty goal at this point. We were given a "stander" from the place Koby receives his physical therapy. Another parent donated it and we will do the same once he's outgrown it. He gets to practice standing with the use of the straps. Our goal is 30 minutes per day in the stander. It strengthens his legs and his core, along with aiding in his digestive development since he can stay upright. This is one of the steps in the process of hopefully gaining the ability to walking one day. We will continue to always have that as a goal for him. He absolutely loves to stand in this! As are most things in his development, seeing him stand (albeit with straps and assistance) were moments of joy for us.

It brought a lot of excitement to the home.

One positive regarding his hope for walking is that he can move both of his legs independent of each other. We saw a CP specialist last week and she said that his bones are too soft to support his body weight, and so she recommends that we get fitted for leg  braces called AFO's. Otherwise there is a risk of bone deformity. His lack of balance is going to be one of his challenges to overcome in order to walk one day. His siblings will do their best to help him with this too.

He's also making progress with gripping objects. He's learning to use both hands to grab things and we have to work really hard to get him trained evenly on both sides so he can have the strength to control his tone. Koby loves to pull hair and squeeze our faces. He knows we won't get mad at him for it so he really takes advantage of that:)

EATING

Koby is still slowly gaining weight. He's about 18 pounds (still very small compared to his siblings at this age). He struggles holding down his food. Right now we give him a special blended diet four times per day, at 150ml per feed. The food has a cake batter consistency, and includes high calorie yogurt, vitamins, tums, olive oil, apple sauce, sweet potatoes, peptide (high calorie formula), baby cereal, and water. We can usually count on him throwing up the meals at least once per day. We've learned to catch the spit up in his plastic bibb and put it back in the syringe and back through his G-tube in his stomach. If we don't put it back in he won't get enough nutrition. Not much progress on using his mouth to eat yet. Amazingly he stays happy throughout the day but he still seems to dread meal time.

It take about 30 minutes to make his food, which lasts for two days.

NASHVILLE PREDATORS

We were so excited to be given tickets for our entire family to sit in a suite for a Predator's game. Pekka Rinne is Nashville's goalie and he gave the tickets to us through High Hopes, where Koby goes to therapy. We had the suite with food and even a small hockey goal, sticks, and a puck for the kids to play with during the game. After the game we were invited to go down to the locker room and meet the players and personally thank Pekka for the tickets. It was so exciting for all of us. We met about 13 of the players and they took time to talk to us. We were so grateful. 

SPRING BREAK IN CANADA

We just spent a week in Mississauga Ontario, which is just outside of Toronto. It was so much fun visiting Cammie (Sharalee's sister) and Robbie Low and their two children Grant and Madeline. We ate so much food! We enjoyed a maple syrup festival, Niagara Falls, Legoland, and just seeing the sites. It felt like we planned everything around where to eat, which was perfectly fine with our family. We miss the Low's already!

We are doing our best to juggle our busy lives. Most of the time we are falling short. At least that is how it feels. There isn't enough time in the day to do all that we want. But we find time to smile and laugh as much as possible. It is almost a daily occurrence that Sharalee and i look at each other and say "can we really do this?" The four older kids are all playing sports right now two days per week, and the three oldest are taking piano lessons. On top of Cub Scouts and church activities it is quite a balance. I've recently been told by a friend "you guys are so amazing. How do you do it all?" The honest answer is we don't do it all. We fall so short but we just do our best to prioritize. And that is all we are ever asked to do in life: just do our best. We are enjoying the ride (almost all of the time).