Well after working on the blog most of my afternoon, I have realized I am much farther behind than I ever realized! I'm trying to update major past events and date them accordingly but I now realize that I need to make time each week or two to update as things happen! So, I will now try to keep that promise to you our family blog readers!
For an overview, currently we are all trying to stay healthy. It seems none of us are really getting terribly sick, but we have all had our days recently were we sure were on the edge of sickness. I am achy and have chills but they just seem to come and go and I never really get any sicker. Not that I am complaining. Today, Maks started up with coughing and a low grade fever so we will watch that. Kale has been fighting a cough for the past few days. We ran out of his good meds recently and haven't gotten a refill yet cause its extremely expensive and we are trying to see if the Dr. can get us an discounts.
As for a medical update for Kale he is doing well. He is living and dancing (his favorite thing) just like any other boy his age. He is currently playing basketball. His dad is his coach, which has turned out much better than I expected! Most of the time on teams where the dad coaches his kid the kid usually doesn't play or throws a fit, but Kale and Erin have done very well with it! His friends Jalen and Gabe are on his team as well. Ok, back to the medical part, I get side tracked easily if you can't tell! Kale had an appointment with his new Dr. in Wichita about 6 weeks ago. We switched to a Dr. in Wichita because we were not happy with his Nephrologist in KC. We stayed with Children's Mercy but the new Dr. we choose to go with is actually located in the Wichita Branch so it works out even better for us. We did decide to stick with the Urologist in KC, so once a year we will still have to travel back there but he is worth the drive, especially if we ever end up in surgery. We really trust him. As of now Kale's kidneys are not changing, which is not necessarily a bad thing. If they begin to change it could be them getting worse so we will take no change over change! They did find a protein leak at his last visit. This alarmed us slightly but the Dr. spoke to us about what it could mean. Essentially a protein leak can speed up the kidney failure. So her recommendation to us was to start Kale on a Blood Pressure medicine. Although we weren't sure about this for a while (we got a few other opinions) we have ultimately decided to start Kale on the new medicine. It seems very odd to us to have a 5 year old on blood pressure meds but the point of this is to save the kidney. Although Kale typically does have high blood pressure that is not why he is on the medicine. Blood pressure medicine protects your kidney. So hopefully this will help prolong his remaining kidney function. Also, in this appointment they discussed with us the urgency of checking into growth hormones for him. We have been giving it more thought as he starts getting older, but we are working with window of opportunity and we are starting to lose time. Our first appointment with the Endocrine Dr's will be in January. We are hesitant about doing this because often times forcing the body to grow will through children into full Kidney Failure but in-order to get him back on the growth line he should be we need to look into our options. Kale is very small for his age. At the appointment they will give us a more accurate guess at how tall he will end up being at the rate of growth he is showing now and we will have to decide our plan of action. All this seems like a lot but Erin and I take it as it comes. We watch our boy grow and play at the rate as any other child and appreciate his wit and charm on a daily basis. He keeps us laughing and loving daily. We explain everything to Kale as he goes through it in order to help him understand what is going on but we can only take it one day at a time and continue to enjoy every moment we have!
Maks ohhh Maks. He is sure giving us a run for our money. Maks couldn't be more different from Kale. He is a spit fire. He is a huge sports fan, he wants to be outside running and playing every chance he gets. Maks is also playing basketball at this time. He is really enjoying it and does very well. His favorite part is dribbling! Maks is not as social as Kale. We switched him a few months back from Miss Debbie (his in home daycare) to a larger facility to help him socialize more. We have had our struggles with this and often still find him off playing by himself but all in all it has been a good transition. Maks just doesn't want to be away from the house or his comfort zone for any length of time. Maks is also about to eat us out of house and home. I never really understood that statement until Maks came along. That kid eats and eats and is still hungry! He is my grazer that will eat then 30 min later be starving. One morning at Grandma Smiths house he ate 6 times before lunch time! I'm just not sure where all the food goes!
Erin is doing well, if you didn't already know he is now working at Kohl's. We got a new Kohl's store back in September and he took a position with them as the Supervisor of Loss Prevention. He is enjoying the job but still trying back into the swing of a Retail schedule. As I mentioned he is also coaching Kale's basketball team and enjoying himself. We had to step in and help because the prior coach had a medical emergency and was unable to coach this season. So far their team is doing great, all the kids love Erin and he is having a great time with all of them and their different personalities and skill levels!
I am still working at the College. I am the Transition Coach for the Adult Education program at Hutchinson Community College. I am really enjoying my work and the perks it comes with during our 3 year grant. I've been able to travel and attend many great conferences. My travels this year have taken me to Long Beach, California twice, San Francisco once and Baltimore, MD once. I really have learned a lot about of Adult Education and believe that I have found a great fit.
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