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Thursday, October 2, 2008

Updates on everything

Cant believe Megan is going to be two in two weeks. We are all getting really excited about the birthday benefit that Renee Blain thought up. Pat and I know we live in a great community with good friends and caring people. We are very lucky and blessed. James wants to be in the dunk tank and Ryan just wants to have fun. I hope everyone has a good time. If anyone deserves a bash like this it is Megan. She is one tough cookie. We just wnet through a 3 week intensive therapy program that gave her three hours of intensive ot and pt with therapists that are NDT certified (neurological developmental training). Ariana, Trevor and Dayna at Innovative Therapies in Winter Park are awesome with her. Megan really worked hard - (she made sure she complained so we knew) - but she really connected with each one of them individually and I could see that she actually enjoyed a lot of it. She was communicating with them through her eyes and facial expressions and she had a sense of comfort that she developed so quickly with them. I am really eager to have her go back and learn some more. They set goals for her to meet over the course of the next year which we are going to work really hard to meet. One goal is for her to be sitting independently and initiating play with her hands on toys. It makes me excited to think about it. She is tolerating being on her belly more too which is such an important part of development that she was not able to get. The drive to Winter Park is about 1 1/2 hour with no traffic driving 70mph the whole way - about 100 miles from here. We went from Sunday nights through Friday nights and stayed at the Candlewood Suites. It would be impossible to travel in work traffic every day back and forth, especially since it would be dangerous for me to drive I-4 2x day with the very few hours of sleep Meg lets me get each night. Meg could not tolerate the travel time anyway. She freaks out and her stomach always hurts so bad with all of her GI issues which unfortunately do not seem to be improving at all. Some days I think it has actually gotten worse. I have been having a lot of feeding difficulties lately too - like she just does not want to eat - like food aversion - to everything. Really disheartening, but I have to keep trying to feed her orally. She needs those muscles in her mouth to work. Especially because I want her to be able to talk someday if she is able. If those muscles dont work, she definitely wont be able to. My experience here at home was so different from Wisconsin. I am so glad that I went to WI in June when I could. I missed Kristi, Shannon, Juanita and Dave a lot when I was away by myself. That experience was the best thing that could have happened for me. It was good for me inside and was a growing experience - maybe a healing one too. I felt like family to all of them and view them that way. If there is ever anything I could do for any of them I would do it in a heartbeat.

James and Ryan are doing good. James is going to be 13 and is making straight A's, playing football for the New Tampa Sharks and is on the Nat Jr. Honor Society. He has really become so grown up and self-sufficient since Megan was born. He really stepped up automatically - like he knew he had to. Ryan is 6 and it has been a little harder for him. James misses me, but Ryan reeeeaaaaalllllyyyyy misses me. I could not imagine being 6 and mommy being so caught up in all this other stuff and being gone so much. I was a mommy kid and it hurts me to know how I would have felt. I am glad he does not blame Megan for any of it. He loves her so much and is very positive that we are going to make her better. He did tell me that he does not want her to be 2 because he is afraid she might die when she is 2. That is so sad that he has to even deal with those kind of emotions at this age. I could only tell him that I did not think that would happen and we are working hard to make her feel better and be better and God knows we are doing all we can.

I look at her a lot and think about her future and what it will be. Will she walk? Sit? crawl? Will I ever hear what her voice sounds like? She does not laugh - she smiles, but never really laughs - I want to hear her laugh so badly - giggle and squeal. The hardest question is how long will we have her? And how will we have her - hopefully in a way that she is not in so much discomfort and distress. I want her with us no matter what of course and fear that something will happen. I dont think I could survive that. It would destroy me, all of us. I dont want to dwell on that and try not to.

This is how mine and Pat's journey is supposed to be and we both are good with it and know we are up for the job. The boys too - it is positively influencing them in ways they dont even know and making them strong compassionate people. They are going to be great Dads someday and their wives are going to be very lucky!!!!

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