Tuesday we had a cardiology appointment. It had been 6 months since our last appointment. Usually I'm thrilled to wait 6 months in between appointments EXCEPT for cardiology. I don't like waiting so long because in my head I've come to the conclusion that the longer we wait, the more things can go wrong. I felt so sick on our way to the appointment. Even though I knew she looked great, we have never had a problem with her heart rate or O2, she was growing with no signs of heart failure. I guess I'm just crazy when it comes to her cardiology appointments...with good reason. Once we got there I was OK. We have a good system for her cardiology appointments. She gets very angry with the majority of this appointment. In order to do her echo we needed a weight and since she hadn't been weighed in awhile we had to do this first. She got a little upset but not as bad as she has in the past. She was almost 27 lbs and 34" long. She had grown 3" in about 4 months. Next up...echo. The echo tech did a pretty good job of keeping my mind off of the images she was taking. Once the echo was done they checked her blood pressure and it was perfect. Last was the EKG. She sat perfectly still while they put all of the leads on her. The good thing about going to the cardiology clinic is that they all know us there and make us feel comfortable. Plus it's always great to hear how wonderful she looks.
Waiting for the cardiologist to come in and talk to us is the hardest part. The first thing he asked us was if she had had pneumonia or shortness of breath. Jay & I looked at each other because he had never asked us that before. He went over her echo and EKG results. Everything is the same. He was very happy with her cardiac status. At this point her mitral valve is still leaking at a mild rate and she has a very tiny VSD...neither of which will probably ever close on their own. The hope was as her she grows they would close but because it's been so long and they haven't closed they most likely will not so we will continue to monitor her and visit with cardiology every 6 months.
We had Early Intervention on Wednesday. We meet at the EI Center on Wednesdays because Molly seems to do better outside of the house. She does not like when people come into her house. She did great, was in a great mood, cooperated, even sat on the PTs lap. Thursday was a different story. On Wednesday we see PT & the music therapist. On Thursday the PT comes to the house alone. Well, she walked in and Molly lost it. She carried on for 15 minutes. She is obsessed with bubbles. I have to blow bubbles the entire time I feed her dinner or she won't eat (crazy but I'll do what it takes for her to eat). So she wanted bubbles during EI but she didn't want the PT to do it she wanted me to do it and she pitched a fit until I did it. Well, EI only stayed 20 minutes instead of the usual hour because she was so bad. We are going to start doing all of our sessions outside of the house. From now on we will meet at the center on Wednesdays and the library on Thursdays.
Today we had an appointment with Growth & Nutrition. He didn't have a whole lot to say. She eats & drinks everything by mouth, takes her meds by mouth, is growing at an appropriate pace but is still very small for her age. This was supposed to be our last appointment but since we stopped using her gtube 2 months ago he wants to see us back in 4 months to discuss taking out her g tube. So we go back in July. Once we were done with this appointment we had to go down to the cardiology clinic for a pacemaker check. Everything is working well and she still has 5 years left of her battery. Once the battery dies and she no longer needs her pacemaker we will remove it at that time.
Since we were going to be at Children's, we stopped by the CICU to see our old friends. It's always so great to go see some of the people that either took care of Molly or just knew who she was from being in there. They always make me feel so great about Molly, how far she has come and sometimes remind me about how sick she was. I have said it before but it's the only place we really feel accepted. It kind of feels like home. Any time we see the doctors and nurses it's like we never left. They got us through so many tough times, made us forget where we were and why we were there to begin with. They really are life long friends and members of our family, because without them we would be minus one. One of the nurses that took care of Molly for 8 months was there. He is one of my favorites. Such a great guy, so smart, funny and caring. Molly kept waving bye to him so he would leave and he told her that he took care of her for 8 month and he deserves a little face time with her because she gave him 3 heart attacks while she was in there but she looked the best he's ever seen her. He thanked me for bringing her by because it's always great to be reminded why they do their job. We got comments like this the entire time we were there. I heard that she was a miracle baby, she looks fantastic, she's so big, she has so much hair and my favorite...her outfit is so cute! I wish I could thank every single one of them daily for all that they did. I know that they are not always appreciated and they have a very stressful job that I could never do. It takes a very special person to do what they do. They are also the reason we do the walk for Children's Hospital Boston each year! So I dedicate this blog post, Molly's success and health to all of the staff at Children's Hospital Boston that has ever had any part of Molly's care!
Kerry
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