Wow... So, it was a fun filled night.... I was sleeping peacefully until Mateo woke me up with a cry. His pouch was leaking at 4 something in the morning. So I get up out of bed, change his pouch along with his pjs and the gauze around his gtube, which is not a quick event... I get back to bed and Mateo, mad at me for having to disturb HIS rest, is whiny for the rest of the night.
We get up, have breakfast and get ready for the drive to Portland, which is about 2 hours away. We are going to see his gastroenterologist, Dr Annie Terry at OHSU-Doernbecher Children's Hospital.
The drive is uneventful and we get there with time to spare. The doctor comes in and examines Mateo and is astonished at how well he is doing. Mateo weighed in at 30lbs 10.3oz and his height is 2'11". His growth chart looks awesome! We had labs done while we were there to check his electrolytes to be sure he is getting everything he needs, which Mateo was less than thrilled about, but for being a good patient, he got 3 stickers, a 4 pack of Playdoh, and a bouncy ball. :)
After the blood draw, we saw the dietician. She recommended that we cut Mateo down to 5 nights a week on his drip feeds (YAY!!), as well as to introduce some fats into his diet. :) The only other change was to decrease his prilosec to once a day... which is good, less work for mama!
All in all, there was not a negative comment this entire visit. I think about it, and I am so very grateful that Mateo is overcoming HD, and that he is fighting against the odds, and kicking ass every step of the way! Mateo is supposed to be small and under weight. He is exceeding expectations in every way. We even got a compliment from the nurse at how well he talks for being only 2 years old!
I am so proud of my baby boy for fighting with all his might, day in and day out! He is a fighter, and I love him with all my being! I couldn't ask for a happier, stronger lil man!!
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