Making Gains

We apologize for not posting as often. I am afraid we spoiled people by posting frequently during our hospital stay. This is a good thing because it means we're back into the swing of our everyday life, which does not leave a lot of computer time. Today, however, I am fighting a cold, so Jamie is spending the day with his grandmother. This is giving me some much needed rest (especially while Miss Clare is napping!).

We have been very busy with doctor's appointments. Everyone wants to see Clare post-surgery. In the last two weeks, she's had two cardiology appointments plus visits with the endocrinologist, pediatrician, and yet another new doctor, a neonatologist. There are some issues with her thyroid and calcium levels, so her endocrinologist has ordered some more lab tests done (we're awaiting the results). Her pediatrician is helping us focus on increasing Clare's caloric intake to aid in weight gain. After this hospitalization, Clare "fell" off the weight chart (she is now in the 1st percentile with her weight as compared to other babies her age - prior to surgery, she was in the 10th percentile). We will see him again in January for Clare's normal 9-month well baby visit. As long as Clare continues to gain weight (even if it's slowly), is progressing with solids, and remains relatively healthy, her pediatrician is not too concerned. Clare is being followed by a neonatologist right now primarily to administer the RSV antibody shot throughout the cold season. This monthly shot will help Clare fight off RSV, a very harmful virus to infants, especially those with health issues. Clare had her second cardiology check-up yesterday. Based on physical examination, Clare is doing very well post-op. Her cardiologist discontinued her Lasix medication, so now we are only on five medication doses a day! Quite an improvement from 12 immediately post-op. So, yes, we've been busy!

Clare also started with her therapy again. She still has physical restrictions, so we are focusing on eating. We gave Clare oatmeal for the first time last week. She still has trouble swallowing, but seems to like the oatmeal. She opens her mouth for bites and protests loudly if she wants more. That's a great step! I am expecting that eating solids will be a very slow transition, but we will get there eventually.

Clare is scheduled for an echo done under sedation on December 16. We are praying for more good news (such as everything is status quo and Clare can come off the blood pressure med).