I wish I could say things were going along swimmingly in my life, but as you've probably come to expect, they are not. I suppose I'll start with me. The symptoms of my kidney failure have been getting worse and worse. It's hard for me to get to work on my best days, and nearly impossible on my worst. Some day it's hard to walk from the car to the building. To be fair, it's a REALLY long walk. I'm not a lot of help around the house, but I try. I have to save all my energy for my kids, and sometimes there's just not much left. I got some tests done recently and my kidneys are functioning at 22% so I'll be going on the transplant list shortly. They were holding steady at 24 since December, but between July and September dropped, and I think that's going to continue. To be honest, I'm Ok with it. I'm terrified, but I also feel like crap 24 hours a day, and I'm ready to start a part of my life where there's at least hope that I'll feel better. I know 22 isn't the worst kidney function, but it's pretty bad, and the specific disease comes with its own set of issues. Needless to say I'm on edge, so husband and I have been fighting and I had to start back with the therapist that helps with my OCD. Stress is a part of the package for me right now... for us. We just do what we can to get by. It's not easy being on the brink of an organ transplant, working full time, and dealing with 2 toddlers. There are also some issues with Andrew, but I'll give you a break from the crap and start with Evie.
Evie is my sweet, smart, beautiful girl. She's still in a half day prep program for school, but at this point it really seems like she's just got bad ADHD and some sensory stuff. She's completely caught up in speech, she seems totally on track in social stuff and has friends. She's smart as a whip. She knows a lot of her letters by sight, all of her numbers. She did addition the other day! She knows every color under the sun and all her shapes. She has outbursts sometimes. I don't want to call them tantrums because I don't think they're completely manipulative, but I don't want to call them meltdowns because it doesn't seem completely uncontrollable either. It's like.. a combination of being 3, getting easily overwhelmed by sensory things, and needing a schedule due to the ADHD. She's more flexible than I'd expect in some areas, but she really clings to some things, like going to big girl school or seeing her grandparents. She's going through a phase where she doesn't want to fall asleep without someone, so I've been snuggling her to sleep, and then in the middle of the night she comes into my bed. It's so sweet. I don't always get the best rest, but in a few years she won't want to do it anymore, and hearing her tiny voice say "Mommy I need to lay with you"! is pure joy. She's very into her mommy and princesses (especially Rapunzel) and the colors purple and pink. She still loves Frozen, she really likes Paw Patrol now, and she likes to to letter flash cards with mommy and Mickey read and learn books with daddy. And she FINALLY let me put her hair in a ponytail and she's so cute I cannot even stand it. She's also in a "I'm a girl!" phase. Somehow she feels the need to tell me regularly. I'm pretty sure I figured that out.
Andrew is the other light of my life. I'm pretty certain God hand-picked these children for us. Andrew is truly an angel. He's sweet and special and he loves me so much. His world revolves around me. And Chuggington. He likes figuring out how to make things work. He likes cause and effect, and turning things on and off. He also loves climbing, walking, and trying to run. But that's where problem number 1 comes in. He trips over his own feet when he tries to run, and I noticed his ankles bend inward when he walks. We took him to an ortho and found out he has hypermobile joints. This makes his ankles unstable and his feet flat and he's going to get fitted for braces and use those until his joints stiffen up some. After that, the next stop we were advised to make was to a geneticist. I thought with Evie having had issues it might be a good idea and he agreed. Evie is also hypermobile, but hers seems to just come in the form of flexibility. And I never thought about this, but mommy is also hypermobile. My kneecaps pop out of the socket with relative ease for almost no reason due to Osgood-Schlotter's disease. So we're going to check out a geneticist. I suspect to test us for Ehlers-Danlos. At the same time, Andrew still isn't talking, still isn't eating table food (he will eat purees) and still won't answer to his name. He's engaging and fun with me, but it's just... it seems like he can't hear. We got his hearing tested and he CAN hear, but I don't think his brain can process the sounds. I think it's some sort of auditory processing problem, but they can't test that until he's older and can communicate. So I wonder if we should check out a developmental pediatrician or a neurologist, but since the ortho advised geneticist we're starting there. The problem is she can't see us until May, so we have to twiddle our thumbs until then. He does have 3 people that come to the house for him, but it doesn't seem to be helping, and my patience is wearing thin. I want my little boy to have what he needs. The good news is he is SO HAPPY. He is always laughing and having fun and he loves to get hugs from his mom and snuggle on your chest when he's tired. He babbles incessantly and he's just a joy to be around. I just want him to have every service/device/whatever he needs to reach his fullest potential. And waiting sucks. This is him last night fresh out of the bath in his dino PJs. The look on his face is 100% me lol. It's hilarious.
So, back where I usually am. Thrilled to have AMAZING babies, thankful to God they are in my life, but in pain and waiting for things to turn around. Hopeful... hopeful for all of us that things improve. We could use it :)
