July 30th is our state recognized Gastroschisis Awareness Day
One year has passed since my last post. This past weekend we joined many other families in raising awareness for the the birth defect that has changed our lives forever. The kids had a blast and it's always wonderful meeting others that are in your shoes or just stepping into them.
There hasn't been much to report, which in our world is a wonderful thing! Joshua's doing well. He's been on growth hormone therapy for over a year now and is steadily growing. The doctors would like to see a little more growth, but any is an improvement from the year before! Between his 5th and 6th birthdays he grew 1/2 inch. He quadrupled that amount this past year.
On top of the growth, he seems to be balancing his electrolytes on his own much better. We've had a few bumps in the road, but if recognized early enough and corrected with oral rehydration, we can stay ahead of the game. No ER visits for dehydration so far!!! This is SO BIG! Of course, Joshua still is not a fan of the nightly injections. (Neither am I to be honest!) Who wants to poke their child with a needle every night?
But, even through the discomfort of these shots, Joshua remains good spirited and strong willed. He's determined and I am so very proud to be his Mama. As difficult as the job is at times, I am so blessed by him and the things he's taught me. The one thing in the world this little boy wants is to be like everyone else, to be like his brothers. That's not always possible, but we try very hard for it's achievement. He's had a summer full of family reunions, trips to the beach and warm days in the pool. Joshua wakes every morning ready to eat and take on the world, living his days to the fullest.
No comments:
Post a Comment