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Wednesday, October 29, 2008

Megan's Birthday

This is Megans second birthday. She had a pretty good day actually. So much better than her first birthday. A lot has happened over the past 2 years. Lots of ups and downs, but I could not imagine our life without Megan. I am overwhelmed with love for our little girl - we all are. She is not lacking in the love department. Happy Birthday Meggie!!!! Lets make a deal to make every birthday a better one???

Fire Island










Uh - Daddy was not supposed to put this picture of me sleeping with Ryan and Megan.......I guess he really likes this one so we will let it stay.

Tuesday, October 21, 2008

Too sleepy

Megan has been excessively sleepy the past couple of days. Automatically I am worried because I am reading into it. She also is having watery stools that could clear a stadium - another sign of sickness looming. I hate it!!! We are leaving tomorrow to go to Uncle Jimmy's wedding in New York and I am praying that I am just being nervous. I have been packing tonight and it is unbelievable how many things I have to take for Megan. A whole pharmacy with supplies, hearing aid supplies, feeding pump, peptamin cans.....Dafos, shoes to use with them because it is cold up there - shoes to use without them.....

Packing for James and Ryan took 10 minutes each comparred to a couple of hours in Megans room. I am really exhausted and have not eaten yet today - hardly had anything to drink either. I need to try to take better care of my eating but it seems like something always gets in the way. James asthma has flared with the polyn and I could not find the heavy duty inhaler - I put it somewhere safe and boy is it safe. Had to go to the doctor for him today to get a new one but that was after we were at All Childrens for 2 hours in the audiology dept for the results of Megs latest ABR done a couple of weeks ago and to have her hearing aids reprogramed, cleaned - a tune up I guess. We also are introducing sign. I think I asked Meg in sign if she wanted to eat Mommy instead of if she wants to eat. My brain is trying hard to hold onto the signs we are starting with but sometimes I cant even call the right childs name out so this should be interesting. Poor Megan is going to say very inappropriate things someday hopefully.

New York should be beautiful - leaves changing, cool weather. We are taking the kids to a real pumpkin patch. None of them have ever been but it was always one of my favorite things to do as a kid growing up. Long Island really is pretty. Sometimes I wish we were there for the seasons and also because the climate would be better for Megan. The heat just kills her. We have to stay in so much over the summer that it gets depressing to me. Also makes the summer so much fun for me with all of the kids home!!!!!!!!!!!!!!!!!!!!!!!!!!

I am going to put Meg, James and Ryan on top of the biggest pumpkin and take their picture. I will post it when we get home.

Oh! The girl scout troop emailed me today and want to name/dedicate their spring triathalon to Megan - last year it focused on girls getting strong. How fitting!!! They said they have been following Megan for a while and the troop wants to do this. I was really touched. I of course agreed and volunteered us to go to one of their meetings so they can meet her. Pat thought it was really special too. Kids are certainly amazing.

My friends children are so compassionate towards Megan. Anna, Niko and Sabrina just love her and oogle over her. Corbin and Connor are always kissing her and coaching her on to move her legs and make all kinds of noises at them. They enjoy her. Tyler and Maggie never pass by Megan without stopping to talk to her or rub her legs or something. All of her crying does not bother them either - they dont get annoyed, they want to help her!!!! Ryan told me after her birthday he wishes he had the disease so he could take all of her hurt. I told him that I didn't because I love each of them the way they are.

Have to go now - going to eat something. Maybe everything.

Sunday, October 19, 2008

Birthday Bash!!!!

Wow! Today was the Birthday Benefit for Megan. It was beautiful out and it all came together great. We were so lucky that it was only about 80 degrees. I had been worrying that if it was 90 like it usually is that Meg would have to go home. She did great today and she looked so pretty. The turn out was more than I expected. Everyone there truly wants to help and the donations reflected that. All the kids had such a good time. The boys loved the dunk tank and football throw and the girls hovered around the face paining, tattoos and hair wraps. My sister and mom along with Leah and Alex (my nephew's girlfriends) worked their butts off all day long and I must say I was quite impressed with all of their work. Luptons Barbeque donated all the food - hamburgers, hot dogs, ribs, chicken, sausage - way more than they were supposed to. I think Pat and I both feel awestruck at the support there is for Megan and our family. James and Ryan had a great time too. James was off with his friends doing whatever 13 year old boys do and Ryan played so hard he looked like he was going to fall on the ground.

I think we helped to raise a lot of awareness about Mitochondrial Diseases. I know I did not know what they were until it was in my house. The United Mito Disease Foundation does not support HBOT but that does not mean I am not behind them 100% in their fight to raise awareness and to help find a cure. I think James wants to do something to earn some funds for the UMDF. It is good for him in more than one way obviously.

I wish I had more time to post updates but the schedule is so tough and there just needs to be more hours in every day. Or I need a housekeeper. I dont want anyone else taking care of Meg except for short periods, but getting the everyday stuff done here is killing me. I have thought long and hard about this and have decided that would work - not a cleaning person that comes every 2 weeks, but someone to come 2 hours every day just to make beds, dishes, a load of laundry, you know - the stuff that piles up if you dont do it!!! For my next birthday I will wish for that - LOL!!!

Yesterday Meg had her photo done for the Dream Calendar. www.thedreamcalendar.com is the site. It will feature a special needs child each month and all the proceeds are going to help build an adaptive playground here locally. It was exciting to do this with her. It is something you dream of doing with a little girl. I dont think she has a modeling career in her future though - she threw up on the red tutu in the first 5 minutes and refused to smile - however 5 minutes after we were done she broke out in a big one????

I am having some urine testing done that will be processed in France and detects all kind of things that our tests here cant pick up as well and depending on those results we might start altering her diet some - maybe the GFCF - dont know yet but I definitely know that her system is sensitive to everything and it can't hurt to try - once again - nothing to lose!!!! Mayci in TN has been doing it and her mom says it is unbelievable - she also has a mitochondrial myopathy and just turned 8 this month too.

Seeing Megan turn 2 and tasting birthday cake for the first time and enjoy it was the best gift in the world. Looking back at her 1st birthday I can see how much has changed. Being so engrossed it is easy to lose sight of that, but last year she looked like she was in a coma and this year she did not know it was her birthday but she got excited at the singing and had a little smile on. I will post pictures - I am so bad at actually downloading them.

Have to go now, so tired my eyes are crossing. Praying that everyone sleeps good tonight and I can get a full night in.........or something like that.

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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