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Friday, November 14, 2008

Meg is Laughing

Wednesday night Megan pulled another all nighter. She was raring to go. I felt like death on Thursday but not Meg. I have never seen her so strong - and full of herself. She actually had some head control and was trying really hard to use her forearm to push herself up. Of course I helped her and she was soooooo happy and you could see the sense of accomplishment in her little face. It was great, but I cant go 24/7!!! I was crying last week and blubbered out - I just want to see her laugh!!! Well I got my wish - God was listening. It was awesome. James and Ryan were pretty amazed too. We filmed it so Daddy could see it when he got home. Grandma Judy came over and we showed her and she cried watching it. Nobody has ever seen her laugh. I can see that something is clicking - the HBOT definitely helps her, no matter what any Dr. says it makes her body work better. Also going gluten/casein/soy free has helped with her GI pain - the first 2 weeks was rough. It was like a torture process, but that is what the Dr. told me it would be like. He compared it too a drug addict going through detox and getting rid of the poison. And it was. He said that the gluten/casein was like an opiate on her brain. Honestly I was thinking I will try it - why not, but I can see more clarity in her cognitive awareness. She is also going to the bathroom every morning - even with all the rice flour, rice cereal, rice everything which I was sure was going to make her not go. I had been mainly relying on babylax enemas every 3-4 days since about July. Nice to see she is doing this herself. You take it for granted that doing that is just going to happen. Not for little ones like Meggie. I feel more positive again that she is better and have a renewed sense of hope and faith. I was really bummed out and was questioning why God was not pulling me through and helping me stay strong for Meg and how unfair it is that she suffers and cries so much AND NEVER, EVER LAUGHS. To see that renewed it all for me. Such a little thing for most, but I cant express how happy it made me. James asked to see the video this morning. He said Mom, just one more time before I go to school. He is so sweet. To be 13 and have such a big compassionate heart. Ryan has also been sick this week. Hard to take care of Meg and have Ryan home sick. He is only 6 and wants Mommy bad when he is sick and Meg requires constant one on one. I also wanted to keep his germs as far away from Meg as possible. She can not get sick. She is gaining a little weight back and cant afford to get sick again. So how do you take care of a sick little boy and a complicated little girl and everything else? Very patiently - that is how.
video

Thursday, November 6, 2008

A Calendar Model!!!!







I had so much fun with Megan having her pose for this calendar that will be out for 2009 to raise money for a new special needs/adaptive playground. Each month the Dream Calendar will picture a different child with some sort of special need or needs. I think Megan was the only child that could not sit up and could not "pose", but I cant help it - I am partial - I think she looks the best!!!!! I never thought that Megan would be able to do anything like this , but this calendar is right up our ally!!!! I wish she was aware of it - every little girl wants to wear a beautiful TuTu and MODEL!! She is going to be featured in July - which is why she is in a red tutu.

Rough Patches

Cant remember what I wrote last - we went to NY for the wedding. It was beautiful. I wish we could have enjoyed it more. Meg woke up sick the morning of the wedding. 30 days on the dot- I could set the calendar by it. Same thing again only this time Zithromax did not work which means she had to go back to the Rocefferin shots. Also teething and got one new tooth. Any weight she gained is gone. GI doctor weighed and measured her Monday and she was 19.3 lbs and holding at 30 and 1/4 inch. The monthly illness undoes any progress she makes. Physically and nuerologically. We switched her over to Neocate too - it is so gross. But she is digesting it it looks like. When we vent her it is no longer like a bubbling volcano of undigested Peptamen. Just a lot of stuck gas now - not so much liquid which means it is making it past the stomach. Feeding issues are a daily battle. I think she associates food with pain now. She cries in pain with her GI issues - so hard too. It is so sad. I would not want to eat either.

I have had a lot of sleepless nights in the past 2 weeks. We actually did an entire all nighter this past Monday. I cant believe how old I feel. I was literally sick on Tuesday from no sleep. The whole room was spinning and I was nauscious. Feeling really sad these past two weeks and crying a lot. I keep hoping for a good day - a normal day and they never come. Sometimes you hit the wall and I hit it hard this time. There really is not anyone to talk to except for Pat because no one else REALLY understands - even as hard as they try to. I feel cut off from the rest of the world and dont know how to get back to it. There is no time to figure it out either. Most of the time I feel like I have got it and I have what it takes, but on days like today I am lost. Have to stay strong though. James and Ryan need me too and besides- Pat is out of town on business - no one to pick up the slack tonight.James has to be at King High tonight to volunteer for an event and I have to take him and pick him up. Little things like this take planning around here!

Have to start the food battle with Meg now so we can keep feeding her orally. If for nothing else to keep her mouth muscles working so we dont end up having to suction her. If it were not for the gtube feeds she would be an air plant by now!!!