Just some recent highlights (plus some):

Some weeks ago, Quinn was running and fell on carpet, knocking 3 teeth to the wiggly point of having to see her dentist 2 times. The teeth are still in the mouth where they should be – albeit a little misaligned. And just one is still questionable if it will remain in her mouth. For her sake I’m hoping it remains, cause the girl likes to rip through some food, not to mention that front tooth missing for next couple of years could be a photogenic problem. Did anyone else know that they don’t just put a baby tooth back in when it falls out if your child is four? That’s just wrong.

Quinn fell this weekend and broke a collar bone, which landed us in the ER today. This is not an injury that is easy to explain to a 4 year old. Poor thing. That vision thing and low muscle tone is proving to be more of a problem to her than Gage at the same age. She’s feisty though – I’ll give her that – she maintains a great attitude about running and jumping, even if it is into walls.

And those stories lead us to the next. We’re getting her some orthotics, just like Gage. We‘re hoping to add some stability to her step, in particular her running stride again. She’d been out of SMO braces, pictured here, for about a year. Looking back now, it just wasn’t worth it. It’s a two or three trip to an orthodic fitter, which we’ll do in the next month. 

Gage has been having major behavior problems at school. So bad that his teacher said "he accomplished nothing, zero, nada, today" on the last day before winter break started. It has been spiraling downward over the last several weeks. And even though there have been many discussions about our CMP (Child Management Program) with his many teachers and instructors about Gage’s triggers for bad behavior none of it has made much difference. I decided we needed to pump up the praise during the break and we needed to do it in a different way. So to help Gage (and Daddy) I put up a small visual reminder that included a poster the size of the side of our fridge. For a week we wrote down every single thing we could that Gage was doing good…from saying please, to helping Quinn and complying to simple requests to taking his meds. This procedure involved a lot of parental energy. But it was a so much more pleasant way to parent than staying on him for every infraction. A deal has been made with Gage. If he has 4 days of good behavior at school, I will have lunch with him on Friday. And I will gladly eat whatever school lunch is served for my $2.25. Monday: great day. One down, three to go.

I’m appealing a "technical denial" of a waiver that allows us to have Medicaid as secondary insurance for Gage. Calls to docs, paperwork, letters, copies, follow-up. Enough said.

I have many entries that I have started, just not had time to finish. If we can keep one kid on her feet and another from tripping children in the hall, well…I might just get to them.

We’re back and we’re better for the visit with Dr. Wonderful. The news is that there isn’t any earth-shattering news. Nonetheless, when we leave her office we always feel like we know more. Like we can be better parents. Like she heard us. Like we have input.

Highlights:

Dr. W added a med to Quinn’s regime to help her excessive urination problem. We’re hoping to see a change in the output soon. It would be nice for her not to wake up pee-soaked. She’s at 6 total meds per day, most 2 times per day.

Dr. W changed some med dosages, added another liquid to Gage’s regime bringing his total to 10 meds, most 2 per day and that lovely shot once per week. Tuesday is our “special” injection day – Happy Valentine’s Day, Gage. When Julian smelled the new med he said “this isn’t so bad” and after I encouraged him to taste it as I do for all liquid meds I’m asking the boy to take, his face contorted in a “this is nasty crap” shape (Gage thought it was funny) and he became a tad more compassionate about encouraging Gage to take the med. I’m happy to report that after a week of the smells-okay-tastes-like-crap medicine, Grandma has come up with the perfect method. It includes us mixing the med with a tad of lemonade, then as we turn to put the lemonade in back to the fridge, we say “now don’t drink that before I’m back!” and Walla…med is gone from it’s Dixie cup. Gotta love a Grandma who can make that happen.

Dr. W would like us to consider having a more meticulous genetic test on one of the kids. The thinking is that it might allow us to find the kids’ particular gene mutation and that might help us find other people that are affected (by writing medical journal articles about them?) with this particular kind of syndrome – the one that includes ARPKD, Ocularmotor Apraxia and various other symptoms affiliated with another kidney disease – that I happen to be too lazy to look up the spelling for at this particular moment. This would cost a considerable amount of out-of-pocket cash and wouldn’t change the course of treatment, so we’re thinking it over. I admit it would be nice to know if they could identify a mutation…but then what?

Dr. W isn’t so anxious to put a timeline on transplant for Gage. She keeps reiterating that there is no way to predict. She’s on to us – no matter how many times we ask her, no matter how we phrase it a million different ways, or beat around the bush, she won’t commit. So, we wait. It could indeed be 12-18 months as Dr. Matter of Fact suggests, or it could be later. No way to know, no matter how many ways I ask the question.

Here’s the dance card from Dr. Wonderful from this visit. She loves to draw out what she is trying to explain to us common folk and we love her for it. It’s a strange dance, the one between Dr. Wonderful and us. Thank the Goddess she’s the one leading. That’s all I can say about that.

Alabama isn’t our home state. But it’s home to Dr. Wonderful and we love her. We make the trek to see her and we’re on our way tomorrow. And we’re happy to do it. Thrilled even, because we know at the end of the day we’ll have some answers. They might not be ones we like, but we’ll have them.

Dr. Wonderful is a compassionate, smart, well-respected doctor in her field of nephrology. We can’t imagine navigating the unknown world of our kid’s disease without her and we wouldn’t want to try.

So, I’ll update more in a couple of days. And um…let me know if you need anything at Cracker Barrel. We love to stop there on the way home for a break and to wreck havoc, dispense evening meds, eat breakfast (for dinner) and buy a treat for the kids. Almost like we’re on a short vacation. Ya know, besides all that talk about kidney transplants.