So I see that it has been a few…..ok, five….months since I updated this blog. I wonder if anyone can keep up with me?! It has been another hectic time with yet another big move….back to Wisconsin. I will spare all the details about it all, but will say it is nice to be able to visit my parents more often, and to randomly see my relatives at the gas station or wherever, and to hang out with my cousin.
With the move comes yet again more transitions into Ren’s healthcare. Because though we moved back to Wisconsin, we are in a different county, almost 2 hours away from where we originally came. So, we are slowly getting her acquainted with new physicians in the area. First, we found a very local physician for her basic care and yearly exams. Next, we met with the Physical Medicine Rehabilitation doctor and Orthotics specialist, whom put new velcro on her KAFO braces. No real changes in anything for her with these appointments – just getting established. We then made a visit to Milwaukee, to meet with her former urologist, whom performed the surgeries on her MACE and mitrofanoff procedures a year and a half ago. We got some cream to help loosen up the skin in those “surgical holes”, as it has been becoming more difficult to cath her, and her hole for toileting has been scabbing over a lot. After seeing the notes from the urologist in Columbus about the pressure in her bladder being of possible concern, he will be connecting with a urologist in our area, whom he knows and speaks with often, to set up an appointment for another urodynamcis study, to re-check the pressure. That will be nice to do this more locally, instead of traveling almost 4 hours.
Next week, we will meet with that local urologist for an ultrasound on her bladder – not sure when the urodynamics study will be – and followed by meeting an endocrinologist, which will be new to us. Then, in the beginning of December, she will have an EEG to provide information related to her past seizures, meet with her new neurologist, followed by a physical therapist. Then, sometime in….February? maybe? She will go to a spina bifida clinic and meet up with all the specialists again in one day. Whew!
Ren is in another new school again this year. Hopefully this will be the last school change for our brave kiddos. They have all adjusted so well to our moves. Much better than me! The nice thing about the situation this year is that I am teaching in the same building as Ren. This is the first time (granted, she’s only in first grade, though she was in kindergarten two years in a row too), and I am really enjoying it. I like greeting her in the cafeteria at lunch everyday. I like seeing her randomly in the halls. I like how my students think she is so cute and awesome. One of them told me the other day, “Ren can go as fast as she wants, and she will never get in trouble for running in the halls!”
And, though I was initially worried about her needs being met in such a small school, I have been overall pleased with everything at school. She has a great teacher who identifies her needs and advocates for them. You see, this is really probably the first time this small school has had a child in a wheelchair, and since it’s an older building, it does not have everything handicap accessible. Her teacher notices these things, and takes action on it. I’m so busy in my classroom, and am not with Ren during the day, I don’t notice the things she does. I’m so happy that Ren has another great teacher this year. Especially since I was so overwhelmed with a new teaching position (that I LOVE) and could barely keep up with things.
She is also getting good support for academics, speech, adaptive P.E., and physical therapy as well. She is hanging in their academically, though struggles a bit with comprehension (math concepts, reading comprehension, etc), but this is pretty typical of kids with hydrocephalus. I still think she has it in there; her brain is still just working on re-wiring and figuring things out.. And though I was at first worried about there not being a nurse in the building, the secretary and aides have been great replacements. Plus, I’m there. I have been told that the parents love the fact that she is in there, and everyone loves her. Who cannot? I mean, I know I am biased, and I am aware of her stinkerish behaviors at times, but, really, she is quite adorable. (And, she knows it….!)
Ren’s speech is making steady progress, and with it she throws in new lines that are hilarious coming out of her tiny voice. The other day she said to me, “Mom….tomorrow can you go to the store and get me things….a Dora shirt, socks, sweatshirt, and a book. Can you handle that?” Only those who know her personally can probably find the true humor in that, but that’s ok. Her walking is…not too different yet. We need to get another walker to practice with at home….and will address that at her December appointments. Still no seizures! And still quite ecstatic about that. Oh, and we have a trampoline now, and though we have snow all over the place now (boo hoo!) aand can’t go on it now, she had a blast on it this fall. She has freedom in that thing, being able to roll around and bounce around all over. Kinda like swimming….which I need to look into again….hmmm……
She is still the happy, carefree, good-natured, determined, funny girl she has always been. And we continue to love her to pieces.
Prayers for continued good health, for her surgical sites to be more cooperative, and continued progress in her speech and walking are always appreciated.
Below are two pictures from her physical therapy in Ohio, and then her school picture this year, which seems to be the only picture I have. I realized to my dismay that I have not taken pictures since moving. Yikes. Gotta get cracking on that.