Miss Molly Moo

Molly continues to amaze us. She is starting to put sounds together that resemble words. She says "ba" for ball, "co" for cow, "at" for cat. Then of course "uh oh" and "OK". She knows most animals from the basic cat and dog to rooster, gazelle and giraffe. She is also starting to learn shapes. So far she knows circle, square and triangle. We still struggle with colors but that will come in time.She can count to five on her fingers too. We are making progress..slowly but surely. We will get there.

We had an appointment with the orthopedic doctor yesterday and it went well. Any time a doctor, nurse or therapist reads her history they think they are walking into a child that is much worse than what she looks like. They are always shocked to see that she looks like a "healthy" kid. The doctor was very nice and sang Wheels on the Bus during the entire appointment. He did his exam and watched her walk. He said that she looks great. She has great head control, great posture, good trunk strength and she's strong. He was sort of on the fence about giving her braces and considered her a mild case. So he leaned towards giving them to her. She will be fitted at the rehab facility and they will make them. We should have them in about 2 weeks. From there she will hopefully learn to walk correctly and increase the amount of time during the day that she will tolerate them. The hope is she will only need them for a year or two. Maybe less, maybe more depending on her needs. We will go back at the end of next month for a follow up and see how she is progressing. The doctor couldn't say enough great things about the rehab facility and told me how lucky we were to be there so that made me feel better too.

We attended the NStar Walk this past weekend and we had such a great time. We don't get out too much, especially with our friends so it was great to be surrounded by all of the people that care about us and of course, Molly. Together we raised over $6500. We really can't thank everyone enough who helped us to give back. Molly is still benefiting from the great care given by Children's Hospital Boston and she always will. They were ranked #1 in cardiology and cardiac surgery for the 5th year in a row and that is exactly why we continue to give back!

We attended a funeral this morning for Jay's great aunt. It was Molly's first time in a church...no electronics or entertainment so it made us nervous to bring her. She was well behaved for the most part. She signed that she wanted a book so I gave her the hymn book until it became silent and she ripped one of the pages. That was the end of that. Every time the woman finished singing she would clap for her. That had to make the woman feel good because I bet they don't clap for her every day. I don't know if we will be going back any time soon but now we know she will tolerate it just don't give her the books.

We have another meeting with the school tomorrow. This time it's with the school nurse. We have to write up a medical plan. The director didn't think she needed one because "she looks so healthy" and I said I understand that she looks good but she has outstanding medical issues and we will have a medical plan. So we go back tomorrow. She also starts pool therapy tomorrow. I'm a little nervous about how she will react to going in a pool without me but like everything else we need to get the first one behind us then I will be fine.
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I think that's it for now. We have had a lot going on and I have a horrible memory so I can't remember it all but that's the important stuff!

I hope everyone has a great Father's Day!