We had our follow up appointment yesterday. We were prepared for bad news from the echo, wait for it......her coarctation of the aorta remained the same. At this time no intervention is needed! Hooray. We do not have to go back for another appointment for two to three months. We were also able to stop her last diuretic medication. We are now down to four medications and a vitamin. Prior to the appointment we had our cardiac neurodevelopmental clinic. The cardiology team at Hope is trying to collect data for pediatric cardiac patients in order to help with developmental delays as these kids get older. First we got her height and weight, 26 inches and 16 pounds. Roughly the size of a six month old. Next we went into a play room with speech, physical and occupational therapy. We played with toys and food. The therapists watch to evaluate Lucy in 5 areas. Back in late October when we started early intervention (which is her at home therapy) in almost all five areas Lucy's age equivalence was a three month old. After three months of therapy she has improved greatly.
Here is her report card from the session:
Cognitive: 10 months
Fine Motor: 8 months
Gross Motor: 7 months
Receptive Language: 10 months
Expressive Language: 9 months
Our hope is at our follow-up in six months Lucy is only a month behind in all skills.
Everyone was really impressed with was her ability to cope and be calmed. Our first three months at the hospital Lucy was inconsolable most times and took hours to calm. Now it is minutes and she can bounce back and continue to play.
Last week we had a nutrition evaluation through Early Intervention. We wanted to bring on this service as we move towards eating solid food. As you know, since we stopped the last diuretic, a trial without the NG tube is a go. We were instructed to wait a week to watch for any puffiness. Mike and I decided it would be best for nutrition to be on board as well. We will wait for all the paperwork to go through, then we will make a plan with speech, nutrition, nurses and doctors. I'm slightly terrified. I want her to do well so she doesn't have to have that tube (or a surgery) but I know I need to keep my expectations in line with what may really happen. She is showing interest in many foods and her water intake has increased. We have been sampling whole milk, but as of now she prefers water. Even though most of it ends up on her shirt!
Here she is taste testing an apple
