Jumped the gun

I'm doing a really bad job of recording my life and especially Aly's journey with Mito.  I am going to assume that is a good thing.  In order for me to write a good blog I need a strong opinion or a major event.  So my lack of blogs means my life is lacking in strong opinions and major medical events.

To catch up on Aly:  We had our 6 month visit with her GI last week.  I was prepared to talk to the doctor about trying to wean down her feeding pump.  Yeah I know she doesn't eat much but surely she would eat more if she wasn't getting pumped with 32 oz of high calorie formula each night.  After all, she's up to a whopping 37 pds!  I haven't forgotten the failed attempt 3 years ago when she spent a week in Riley Hospital while trying to get her off the night pump and onto daytime boluses, which would be the first step into eventually getting her off the feeding tube someday.  That attempt failed miserably and I told myself that I would not push the issue anymore.  Fast forward 3 years and I find myself asking again.  This time I was met with a resounding "No".  Well, actually it was "That is a long time down the road but if you want to do a 3 day food diary so we can see how many calories goes in her mouth that would be fine.  We can use it in the future."  Sigh.  I knew it was a long shot but I got ahead of myself again.  Just when I'm content with how she is doing I have to do something dumb and get disappointed all over again.  So, I've rallied myself back and gotten over it.  I'm moving on to other ways I can help her. 

She goes to school until 1245pm everyday.  She wants to go all day like the other kids.  She asks me when she comes home "What do you think my friends are doing at school?"  She wants to go to music and art like her friends.  The Kindergarten Christmas program practice is during music class so a month ago her teacher and I set it up that she will go all day on music days.  She LOVES it!  Since that has done so well we've decided to increase that up to 2 days a week and let her go to music and art.  She is so excited.  I war with myself about pushing her to be as "normal" as possible and pushing her too much.  Her therapist has talked to me before about how kids that are pushed are kids that thrive.  Last night Dr Cohen (top dog Mito doc) held a meeting for families about Mito.  One of his points was that exercise is very important, as much exercise that they can tolerate.  Her therapists went to hear him today at Grand Rounds and he talked about not protecting the kids as much and pushing them into mainstream life as much as possible (unless they have an active virus).  This eased my mind alot because I have always had the thought that if she is capable of doing something, why not let her do it.  If she gets too tired, she'll rest.  If she gets too hot, she'll rest.  All I can do is keep her hydrated, rested and let her live her life.  I'm letting her be a 5 year old girl.  Birthday parties, dance recitals, theme parks, playdates, school programs and activities.  Who knows what the future holds so she will live the fullest TODAY that she can.

She broke my heart into a million pieces last week.  At school they have an Olympics that they participate in during gym class.  She doesn't go to gym class so she did not participate.  She couldn't have anyway because it would have been too much running but she didn't have any idea that this activity had been going on.  They had an award ceremony one morning last week with the entire school.  Some kids got medals and others got ribbons.  That afternoon she said to Scotty and I "Everyone in my class got a ribbon but me."  It never occurred to me or her teacher to have a ribbon for her.  We could have arranged for her to go on stage and get a ribbon, it's not a big deal but neither of us even thought about it.  So here's my little girl who knows she can't run like the other kids and thinks THAT'S why she didn't get a ribbon not b/c she doesn't attend gym class.  All the sudden her brother came to her rescue.  He went to his backpack, got the ribbon he received out and gave it to her.  He said "Aly, you can have my ribbon, I got one last year so I don't need another one."  The smile on her face was worth a million and now the ribbon is hanging on her wall.