Miss Molly Moo

Molly has been doing really well. We have been busy and have had something going on almost every day. Therapy takes up a good chunk of our week and time. Pool therapy started out great the first time then quickly went down hill. She screamed and cried the entire session. I ended up taking her out 10 minutes early because I couldn't watch her do it anymore. The whole time she's screaming I'm thinking "oh my god her heart". I couldn't take it anymore so we left. The one after that was a little better but still tears. There is an aide that's in the pool that she loves but this week will be the first time he won't be there so we will see how it goes. As we are driving up to the hospital she starts fussing. I don't know why because she loves PT. She does NOT love speech. They were taking her in without me and that didn't go well so now I go in with her. She still fusses and cries some times and doesn't like the woman but I do. She's great, as great ideas and Molly has been making so much progress since seeing her so unfortunately Molly is going to have to suffer through it : ) I think part of her problem is she's always used to fussing and getting her way and she's not this time. She has made great gains with PT. She is taking so more and more steps and they are stable steps. She is standing independently longer and longer. She was fitted for braces and those should be in either this week or next so those should also help her. As far as speech goes, this is the area that we have always struggled with but she is doing great. I don't feel like the therapy sessions are a waste of time. She is so smart even though she can't tell us. She is starting to imitate sounds...or at least try which is something she wasn't doing a few months ago. I am very happy with where she is right now.

We have had a lot going on. We were asked by Boston Children's Hospital to take part in their radiothon with a local radio station. We were only on for a few minutes but it was such a great experience and of course any time we can give back in any way, we do it! We had time to kill before we went on so we walked over to the CICU to see some of our old friends. One of the nurses that was on our team was there and she couldn't say enough great things about how good Molly looked and she said my favorite statement. "If you didn't know what she had been through, you couldn't even tell." I never get sick of hearing that. Even though it's been a few years since we have been there it's where I feel most comfortable. I always feel like I have known those doctors and nurses my entire life. It's always like I just saw them yesterday...thank god that's not the case!!!!!!!!!!!

My niece was up from North Carolina for a few weeks so we took her and Molly to a zoo/amusement park. While we were there Molly went on some of the rides and she loved them. She didn't want to get off. Which is such a great reminder that she really is a "normal" kid. After each one we would go over and get her off and Purell her hands. On one of the rides, the ride operator, went over and took each kid off. I started yelling to the guy that she doesn't walk but he didn't hear me. He took her off, stood her up and she fell right down...so much for "normal" kid stuff. It broke my heart.

We recently went to a water park with Jay's family. It was such a great time. Molly had so much fun. She was going down the water slides, playing in the wave pool, etc. It was so great to see her having so much fun. She has no fear!

We also had an appointment with Growth & Nutrition on Friday. This appointment was made to discuss having her g tube removed. We haven't used it in 6 months. She has taken all of her food, medications and fluids by mouth...without a fight. The dr. said that he spoke to her GI doctor and he would like to meet with us to discuss having it removed. The type of g tube that Molly has is called a PEG. After a PEG is placed it's usually switched over to a different type of g tube called a Mic-key button. Well, we never had hers switched because we felt this one works and "if it ain't broke, don't fix it". Her general surgeon was also in agreement with keeping it because of her anatomy and the placement of her stomach, he didn't want to risk losing the site. Well, now that it's time to have her g tube removed they may want to do it in the OR under general anesthesia. The problem is genenral anesthesia is risky for Molly. Will she be OK? Probably but he doesn't know if it's worth the risk. We're not sure what the other option is for removing it but that's what we will speak to her GI doctor about on August 27th. The good news is that Molly has been doing so good with her growth and weight gain that we have finally been discharged from Growth & Nutrition!!!!

August is also a busy month for us. She has 2 doctors appointments, therapy twice a week, open house for preschool : ( , meeting with the preschool teacher, finalizing our plans with Make a Wish for our trip to Disney (woo hoo!) and whatever else comes along. So we are going to rest up this weekend with another trip up to Jay's family's house in NH!

I hope everyone is having a great summer!

Kerry