Friday, March 18, 2011

Sick Times

This post is totally not HD related in anyway, but I just wanted to give a reminder that kids with HD not only have the health problems associated with HD, but they do still endure all the other stuff that comes with being a kid.
Mateo caught a cold a couple weeks ago. He had a runny nose and a cough. His cough started to get worse, and then he started getting high fevers and lost interest in eating, so I decided it was time to take him to the doctor. We make it to our appointment, and the doctor looks in his ear and says, "oh, it's infected. I can see puss." My poor boy had an ear infection and I had absolutely no clue. He didn't fuss or pull on his ear, or complain at all. I felt like a horrible mother. And it gets worse.
The doctor then proceeds to finish Mateo's exam by listening to his lungs. She stops and asks me, "Does he have asthma?" I tell her no, or at least it's never been brought up. She then tells me he has fluid in his lungs, otherwise known as Pnemonia. I felt so bad for my baby boy! So, along with all his HD related meds, he now has antibiotics twice a day for 10 days, ear drops, and an inhaler to help with his breathing until he kicks the pnemonia. He was also taking Motrin for his high fevers.
Thank goodness he is doing much better. The fevers are gone, the pain from the ear infection has subsided ( I think cuz he's not as whiny and clingy) and his cold syptoms are going away. He still does have a cough, but it is not as bad as it was.
One HD tidbit, I am currently working on writing the local News and Newspapers trying to get someone to run a story on HD to help raise awareness. Wish me luck!

Wednesday, March 2, 2011


Mateo had a follow up with his gastroenterologsit at Doernbechers yesterday. It was a GREAT appointment. Mateo weighed in at 32lbs 1.1oz and he is 3 feet tall. His growth chart looks amazing. Dr Terry said that this is because of the surgery (Step Procedure) that pediatric Surgeon Dr Wadie recommended for Mateo back in October of last year! So it was well worth it! Mateo is doing exceptionally well!
As for changes, we didn't have to do any labs, which I was greatful for. She said to decrease his g-tube feedings to 3 nights a week, but to have a weight check done in 3 weeks to be sure he is still gaining. If he is, I am to call her with the weight and she will decrease him by another day until he is completely off g-tube feeds!!! We are making such good progress!
After this, in 4-6 weeks, we do need to get labs done, to make sure all of his levels stay consistant since we are making some drastic changes to his diet.
And, we don't have to go back to Doernbecher for 3 months!
Mateo is such a strong and brave little boy. Every day I look at him and I see a fighter. He has been through more in the last 2 years than I have in my entire 28 years of life, and he is still as happy as can be with a smile on his face! I couldn't be more blessed. :) I love love love this lil man with all my heart and soul. I am so very proud of him!