Good news from cardiology and otolaryngology (ENT)...but fairly disappointing news from nephrology and endocrinology.
Max was totally not happy with all the heart evaluations. He has never had such a harsh aversion to it all. Fortunately Mommy love and Elmo videos saved the day!
Elmo video is right there so the crazy robot wires were not a problem! Yay for Elmo!
Now on to Nephrology...
Max's recent ultrasound showed kidney stones and small kidneys (for his size). Additionally, there is a decreased function level and elevated blood pressure (sign of kidney issues). Sooooo...right now we are changing his diet with A LOT of water and lower sodium. His team is hoping this helps break up the stones and we won't have to resort to medicines.
Then after a few other appointments, we moved on to meet with Endocrine. Max's growth issues are not a surprise to me...
One, he is obviously small for his age. (Good things come in small packages, right?)
Two, a lot of individuals with CHARGE have growth challenges.
Three, his last two blood draws have indicated very lowel growth hormone levels...one didn't even show up at all.
So as expected, we are scheduling a hormone stimulation test for confirmed proof. He must fail both tests to show he is truly "deficient." Once this is determined, the plan is to begin growth hormone shots.
The surprising part of the treatment plan was that it involves daily shots until he is 16 years old. At that time, he will be retested and the plan will be reevaluated. Just the thought of giving him daily shots for the next 11 years...hmmm, that was a little surprising. In the grand scheme of things, it's such NOT a big deal...just disappointing.
Fortunately, Maxwell was an amazing trooper throughout the day and kept me focused on what is most important....he is a happy, loving, energetic and social little boy who enjoys life.
"YAY! The day is over...let's celebrate!"
Despite only getting four hours of sleep the night before and being on the go, go, go all day, this is Max that night at 10 pm...still ready to rock! (And yes, these wonderful cymbals were hidden that night so they can only be enjoyed during the daytime.)