Maisie now has a permanent PICC line, which causes quite a bit of trouble let me tell you. She has a lot more energy lately and her hands have been moving constantly. Particularly, moving to yank on the PICC line. Literally her arm is wrapped in gauze, medical tape, and an ACE bandage to keep her from picking at it. We were sent home with arm restraints (see above), but for heaven's sake the girl has just gotten excited about moving her arms again! I'm sure as heck not going to restrain her. But, the PICC line has already been disrupted badly enough to get us to the ER twice.
Now, obviously the picture above is not Maisie. But it might as well be, and that's another change I'm making. TONS of people have been asking that I post pictures of Maisie so they can see what she looks like. I'm not willing to do that. I'm not even willing to post pictures of things for fear that something in the most innocent photo will help my ex-husband to track us down. That's the same reason I blog from my mom's account. However, I am willing to seek out photographs of other babes who look like mine so you can see what her button looks like, how skinny she, etc. All the pictures will be linked to their sources for copyright purposes. That girl is Mabel, and I know I've talked about her before, but I never cease to be amazed at how much they look alike. Mabel has Batten Disease and is very hypotonic. She is skinny and floppy and has a mop of fuzzy brown hair just like my doll. They also have the same big eyes and toothy grins. The only difference is that Maisie has great green eyes while Mabel's are brown.
Another big, wonderful change is the preschool down the street. We took Maisie out of public preschool because it was too much stress for her teachers, peers, and mama to have her away from home. Homeschooling a preschooler is weird and chaotic and I am craving some time to breathe, drink some tea, do a little yoga, have a little time to myself. And then the Open Arms Adaptive School opened up.
This is such a Godsend. Just when I needed it most, the old preschool right down the road closed and was taken over by an amazing, adaptive preschool with a neuromuscular specialist on staff. Other special needs moms will know where I am coming from here. Adaptive education is so hard to come by, and all of a sudden here's one literally a five-minute walk from my house. I cried and praised the Lord for literally two hours when I heard the news. Maisie will be attending preschool with just five other kids. We have already met the other two "special needs" kids, who are Lily and Christian. Lily has Rett Syndrome, which is similar to myasthenia in several ways and is actually something we tested for. Christian has muscular/retinal dystrophy and can no longer walk. He is mostly blind. Maisie will only being going to school for one day a week for now. We may add more days after we see how comfortable she is, I am, and her teachers are with her at the school.
For the other three kids, who are "normal," I was asked to write a letter from Maisie to them, explaining who she is and why she is the way she is, along with a photo and if possible some small bits of equipment, like a spare g-tube or anything that could be shown to the kids so that Maisie's medical equipment isn't so harsh and scary for them. Here's the letter I wrote, and a very similar picture to the one I included. Again, that's Mabel.
Hi! I'm Maisie!
I am so so so so so excited to be going to school with you! I haven't gone to school in months because I need a lot of special care, and it was too hard on me, my teachers, and my mama to be away from home. I hope Open Arms will let me go to school and make new friends. I might not say hello or "Nice to meet you!" but that doesn't mean I don't want you to be my friend. Sometimes, I might lie on the ground or sit in the corner and not speak or move for a while. I might even fall asleep! That's because I get tired very easily. My muscles wear out much faster than yours do, and I need more rest. But that doesn't mean I'm not excited to play with you and having a lot of fun. I just need to rest and then I'll be raring to go again. Also, I am partly blind so if you wave to me and I don't wave back, I probably just didn't see you!
At school with me I will have a stander, which helps me to stand up with the rest of you so my muscles and bones can grow. I can't stand on my own right now, but hopefully I will be able to soon! I will also have a booster seat to help me sit up in chairs and on the floor. Finally, I will sometimes be in a wheelchair-stroller. I am not riding in a stroller because I am a baby or because I'm lazy, but because walking is very hard for me. I'm working on it every day, but right now I have to be carried or pushed in a stroller. Finally, I have a band around my arm and a tube underneath it. This is how I get medicine. I also have a button on my belly. This is how I eat. I can eat by mouth but it is very difficult for me and I can't eat enough that way.
Here's some more stuff about me: I'm four years old. I love love love love Doc McStuffins and Sesame Street. My favorite color is yellow and I love to get dressed up.
I know I'm small and weak. I'm trying my hardest to grow, but somehow it just isn't happening. Please remember that even though I might not be able to speak or make a lot of noise, I still hear and understand everything you say to me and around me, so be careful!
I might cry a lot. I'm often in pain. I might not participate and I might get frustrated. But I appreciate you learning with me and letting me join your classroom. I know I can be a handful, and I am so grateful for your support.
Hugs,
Maisie
Hugs,
Maisie
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