Camping!

I'm not much of a camper, even in someone's backyard, even with the bathroom 15 feet away, and even with an air mattress as thick as my regular bed mattress. I guess this is even more proof on how I've been overcome by my daughter's magic powers. There is no one else in this world I would have slept (or not slept) outdoors for. Regardless, I'll admit, amidst my complaining it was really fun to watch her taste her first smore, roast her first marshmallow, and get the wits scared out of her by the train that I swear drove right through out tent in the middle of the night!

Bedtime Stories

As I was putting Butterfly to bed tonight she looked at me and told me she was going to be a big sister. Imagine how puzzling this was for me since I had no knowledge of this and no ability to make her a big sister. She continued on with the fact that SHE had a baby in her belly... "I'm not sure if it will be a girl or a boy Mama. It might have brown skin like me or pink like you. It might have curly hair or straight and it might even speak Spanish! I don't know if it's an India or America, but I know it's a baby... well a baby or a mermaid."

I think I may have a few things to clarify for her, well that and limit how many time a day she watches "The Three Bears and the New Baby"

Filling the Boot

Today was the annual Fill the Boot fundraiser for the MDA. Actually depending where you are in the country it's different days over the weekend. Our local fire department did theirs today and invited us to be a part of the fun! Butterfly was thrilled to do her part holding the big boot and helping gather donations for Muscular Dystrophy. I had to laugh as when she was interviewed by our local TV station they asked her a bunch of questions then she paused and while still on the air said, "now I have a question for you... why exactly are we here?" Yep, nice. We've only had this discussion for weeks and participated for two years now! We also did a newspaper interview on the same subject this week. My, my, my.... sometimes that child baffles me. She really does have a future in sales though. So many people tried to leave the grocery (we did this outside our local grocery store) and not make eye contact. I know this trick as I use it quite often when people are trying to either sell me something or collect money that I'm not planning to give. Anyhow, they'd quickly walk by and avert their eyes and she'd call out from her wheelchair, "excuse me! Please fill my boot! The money goes right in here!" I'll admit, several people who clearly were not going to stop too a minute and dug their spare change out of their pockets and dumped it in. She's a braver soul than I, that's for sure. I did have to tone her down a bit though since she was relentless when people kept walking by. She got her rhythm though and without being obnoxious people seemed to respond to her.



We are so blessed to have a group of firefighters who've taken my little Butterfly under their wings and helped to keep her flying. They are are always there for her with an encouraging word or a visit. Just a nice group of guys. It's so good for her too with her limited contact with people. As far as the MDA and helping them with this project, we do so mostly because technically she is qualifies for services through MDA (camps, clinics) since she has a neuromuscular disease that is under their umbrella, but we don't currently utilize their services, but the research and opportunities they've provided so many kids is worth it regardless. I also think putting faces to diagnosis help people to see that we are talking about people and/or children, not a bunch of letters and medical diagnosis you can put in a neat little box.

All Worn Out

We survived the week. It's hard to believe how much fifth grade is wearing me out! :)

Butterfly did really well. She made it 3 days this week for half a day which was wonderful and then had speech here on her days off. We also had a good doctor's appointment on Thursday and other than some mysterious bumps in her liver numbers things looked great. She's so worn out tonight, but has the weekend to recover so should be fine. Sunday we have to help with the big MDA fundraiser with the local fire department. The main diagnosis that Butterfly has is under the MDA umbrella so we'll be out with the firefighters for the annual "Fill the Boot" drive. It's a national drive so keep your eyes open this weekend.

Yesterday Butterfly was on her "cell phone". You know the ones you get for $4.99 at the Disney store where the princesses call and talk to you? Well, she "called" her Nana with the following advice. "Nana, in order to feel better you need to eat your porriage, have some fish stew, and go to bed and have fun... maybe Papa can help you have fun in bed. Put him on the phone, I'll talk to him." She then "talked" to Papa giving him the recipe for fish stew and told him to have Nana have fun in bed... maybe even color and play on the computer with her! Hee! Hee! So funny!

Thanks to all my readers for returning, I've missed you all too.

School is Back and So am I!

Today was the first day of 5th grade... for both of us! Well, it was my second, first day of 5th grade, but whose counting? Butterfly has the honor of attending school with her Mama since the school won't do their job and hire her a nurse and then to top it off they didn't even have an EA (education assistant) for her like it is STATED IN HER IEP so I got that job too. We were both so messed up we took a quiz and the entire class was one number 8 of a quiz and we were still on question 1. It doesn't help that she can't write anything more than her name and this consisted of short answers. So there I sat writing for her. Needless to say a meeting was in order by 9:15 this morning and she was pulled out in the resource room. She's just going to be in her room for a half an hour for greetings and announcements and then return to the resource room for all her other activities. She only attends 2.5 hours 3x/wk, but since by the time we left she fell asleep in her chair on the way out of the building I think it was plenty.

Nothing much new on our side. It's been about 6 weeks since I've been in the blogging arena. Been in the hospital with Butterfly part of the time and just trying to keep life going the rest of the time. I miss my blog though and all of you and I promise to come and visit and catch up with each of you this week. That's one nice part about this school thing. I can take my computer and just do her meds and she can do her work with her teacher in the resource room. Since I have a purpose for being there and such I won't feel guilty for being on the computer! Not that the hours I've spent "farming" on facebook this past month have caused me great guilt anyway... just sayin'.