Not a whole lot is new. Molly has been doing really well. Her incision healed up nicely. We had a few nights when she was waking up crying and scratching her hands. We tried everything and she would only stop when she woke up completely from her sleep. It went on for a few days then just stopped. We will never figure this kid out and I don't even know why I try! But we are beyond that now and waiting for the next piece of puzzling behavior. She has been crawling around a lot more. She gets up on her knees and pulls herself across the rug. I tried to record her doing it but of course she doesn't cooperate with me. See, more rebelious behavior. She also is able to go from her belly up to her knees. She's done it a few times now. She did it once during her hand scratching episodes and I kind of thought she might be possessed because when I went into her room she was doing it in her crib and I had never seen her do it before. Then she did it tonight when she was playing on the floor so I'm OK now. She's not possessed :) She also got a bike for her birthday from my parents. Since we are having some nice weather they gave it to her early so we can start using it. She LOVES it and she looks so stinkin cute riding in it. She is like a little queen sitting in it letting me push her around. When I stop she does this "giddy up" type thing for me to get going again. I don't know if it makes me more happy to see her happy or to be doing normal 2 year old things. Then we stop to talk to someone, they say hi and she says "ahh" and I'm reminded that there is nothing "normal" about her. It breaks my heart for a second but then I get over it and know that some day she'll say "hi" and a million other things and I'll be begging her to be quiet. But until that day comes she can say whatever she wants, as many times as she wants, as loud as she wants.
We have an appointment on Monday with her GI doctor. I'm a little excited because he hasn't seen her in over a year and I always like to get the opinion of people that have known her since she was sick. We are meeting with him because the general surgeon wanted him to see her in case there is any other abdominal procedure she would need to have done at the time of the LADDS so he's only in there once. She would have to go through a series of tests to see if she refluxes, etc. I'm glad we set this appointment up because we have some questions for him before we make a final decision on this next surgery that keeps haunting us. Hopefully we'll get some answers on Monday which will help us to decide and put this behind us. I'll update after the appointment. We also have an appointment with Growth & Nutrition on Wednesday. I love when we have to make 2 trips into Boston in the same week because we couldn't coordinate appointments. I was speaking with Early Intervention the other day and I was explaining how frustrating the feeding part is for me. I feel like all I do is feed her baby food, yogurt and give her juice. Yes it's great that she eats that much and drinks now but I want to know how to get to the next step...table food. So after going over everything..things she won't eat, certain behavior, what she will and won't put in her mouth we think we have some kind of answer. She has a sensory/texture issue. I'm going to speak to Boston and see what they think and if they have any tips on how to get her to overcome this. If she wasn't so stubborn...
That's about all for now. I hope everyone is doing well. Here are some pictures of Molly enjoying her wheels!
Kerry
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