Tuesday, October 27, 2015

Pumpkin Patch and an Update

This weekend we took the kids to the pumpkin patch with our friends Eric and Caitlin. It was interesting. Andrew loved it. He did an amazing job walking given all the obstacles, and he was so happy to be outside. Evie fell in love with the slide, but didn't understand taking turns, so we had to tell her to stop going up there, and she had a meltdown. That part kind of sucked. Three is a tough age for any kid, but especially a kid with sensory issues. I think slides really tick some boxes in her daily sensory necessity list, and taking that away was rough, but she can't just do anything she wants because she needs sensory input. Still, we got some good pictures and both kids were great at dinner afterwards. I mean honestly Andrew is always so well behaved, and Evie isn't badly behaved normally. She's just 3 and we really need to think about the things that are going to occur when we go out. Most places aren't an issue, but if we go somewhere that she can get sensory input, we need to make sure we have ample time to transition her into leaving!

The kids have been tiring us out a lot lately, but is anyone surprised? We have two kids less than two years apart. It's wonderful, but exhausting. And unfortunately Andrew seems to have something going on neurologically. We think he may be having absence seizures. The other day his SLP and another therapist were there when it happened, and confirmed I'm not crazy. They're hard to pick up on because they're so short and kids are so easily distracted, but this time he was sitting in the high chair and just stopped responding in any way. He just stared into space and nothing could break him of it. They were very concerned and told me I have to discuss it with the neurospychologist next month.
I'm worried about my little boy, but he's happy , and that's the most important thing to me. Yesterday when I came in the house he just ran to me and put his arms up to be held, and I could've melted into a puddle on the floor. He's such a darling little one. We just need to figure out what's up before I lose my mind. 

Monday, October 5, 2015

Long Overdue

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 :)