Last week was filled with early morning appointments. Isaac went to the Endocrinologist to get his thyroid levels checked out for Hypothyroidism. I also talked to the doctor about his growth, which has been a slight concern. He was 24 pounds in the fall and then he had a few hospitalizations during the winter months and lost weight. He's been at almost 24 pounds for a long time...even after the dietitian increased his calories. He's about the size of a typical 1 year old at 3 years old. It does make me wonder how small he will be at 5 or even 10 years old. Will he always be teeny tiny? Of course this isn't such a bad thing since he's easy to carry around the house. They did a lab test in January to make sure that he doesn't have a growth hormone deficiency and they didn't find anything. Most likely the slow growth is somehow related to his chromosomal disorder.
We have a new nurse working Sunday night and she seems fabulous so far. She's young, energetic and a fast learner. Perfect! It's been a long process getting her trained for the job, but I think it will work out great. Having a new nurse in the home can be challenging at times, but we have been very blessed with the stability we've had so far. Nurse L and nurse T have been with us since he was 4 months old!
I love summer because we can finally break out of our plastic bubble. Now that Isaac isn't needing oxygen 24/7, something as simple as playing in the back yard or going to the park is much easier. I don't have to fill up the tank or worry that his sats are going to drop while we are enjoying the great outdoors. It's the little things in life. Autumn was so excited about her brother's wheelchair stroller that she took him for a wild ride on the driveway, I had to tell her to slow down! Then she wanted to help by pushing him around the park. She's such a good big sister!