GAGE

There are many things on the list, post vacation (drats!) that must be done in the area of Gage Assistance.

1. Get name of child therapist that can deal with child trauma. Our behaviorist is great, but I think I need someone whose practice is just about kids who’ve been through a lot. Then call pediatrician to get referral sent for insurance.

Got the name, now need to see if he is on our plan and get a referral if he is or I need to add up his rate and figure out how to pay out of pocket. Spoke with Doc #1, who has a very limited practice, so he referred me to another Doctor. I’ve left a message and sent her an email.\

UPDATE: I spoke with Doc #2 and she referred me to Doc #3. She says as soon as she heard my message about Gage’s previous experience with medical interventions she thought that Doc #3, who is a play therapist, along with some other training and all for pediatrics. I sent an email to her and I will call her tomorrow too. And, the bonus of it all, she is close in proximity. I’ve requested to go in without Gage to get to know her. I have no idea if she is accepting patients or not. We shall see.

2. Pick up the book I ordered Trauma Through a Child’s Eyes. I’d seen it on a blog of an adoptive mother and I don’t know – I just thought it might be interesting for Gage.

I got and scanned the book in a couple of hours. This is all very interesting, because they address – many times in the book – the trauma experienced with repeated childhood medical interventions. There was a list of symptoms that show in behavior and let’s just say that Gage’s name could be footnoted. However, I notice that the list also mirrors the signs of other diagnoses that have been thrown around when talking about Gage – ADD, ADHD, Opositional Defiance Disorder, just to name a few. It has a lot of information about ways you can help your child cope – and we did a fair amount of them. I think it might teach me something about helping that Quinny B navigate some rough waters.

UPDATE: There is something to this book. I hope to be able to delve into it a little more this weekend. Right now, I am jumping around looking for stories that have something related to our situation. I do think there is something to the physical reaction to medical traumas being nureologically mapped in the brain. So for example, when there is a medical procedure with anxiety (say, for example the child is held down through crying and fighting) they are stuck with that physical memory. That is so very simplified to what it is all about, but I’m very interested in reading more.

3. Get labs this week to check Prograf levels because he is on his second series of scalp-eating-fungus drug stopper.

Appointment is tomorrow.

4. Get us parents in to see the behaviorist to tweak the new behavior plan.

Sent email, but need to call. Haven’t heard from behaviorist. Either he is on sabbatical, or he read my email and this blog and decided life is too short to deal with us.

5. Get Gage to clinic appointment in a week for transplant and talk to doc about possibly stopping the predinsone altogether (he’s on a very low dose, but still).

Appointment is next Thursday.

QUINN

1. Just called to get lab orders for her for this week, to check the dreaded BUN again. Should be faxed today, so we can go in tomorrow or Friday to a lab nearby instead of the hospital lab, where Gage has to go.

2. Rework her diet again…we’ve been letting the potassium creep back in.

3. Start the med that helps her…um…in the digestive area. Enough said.

UPDATE: Get her to let me condition and brush her hair. The Summer of Chlorine Hair has wrecked havoc. And we are finally past the Year Plus of grow out (and about 12 haircuts) after Gage tried his hand at hair cutting while he was bored recuperating

BOTH

1. Need to get them both ready for school! Backpacks, clothes and school supplies!

UPDATE: Tax free weekend shopping this weekend. And we got internet in Gage’s room on his computer, with lots of rules and spy-on-your-kids software as well as parental blocking software. And he has to share with Quinn.

ME

1. Need to get ready for meeting in Kansas City regarding an advisory committee I chair for the PKD Foundation. Leaving Sunday morning and getting back Monday night.

UPDATE: Work. Back from vacation and in full swing with getting back to work. Which is proving hard. But we have clients, who, you know, need some work. Walk for PKD stuff…like finish getting sponsors (we’re down this year)