Let’s talk about splitting up duties when you have sick kids, shall we?

Before the Kidney Debacle, Gage only had that little eye problem called OMA we were sent to specialists regarding his development. He was nearly 18 months old when we started the process of a complete evaluation for fine and gross motor skills and speech. Over the course of a couple of weeks he was evaluated several times and there were multiple reports coming from 4 different specialties.

At the time Julian was traveling for Big Corporate High Dollar job every week usually Monday through Friday. It wasn’t ideal, but at the time I was working a lot less than I am now. I had a few clients and they kept me busy about 15 hours a week. Back then, Gage was in a church morning out program about 8-12 hours a week. The schedule was perfect for me as I enjoyed both being a SAHM for most of Gage’s day and owning my own small little business. I felt lucky.

The team recommended a care plan that included seven 1 hour appointments a week - two speech, two occupational therapy, two physical therapy and one vision. We had appointments on 4 days between Monday through Friday. I’ve written about how emotional it is to have health care professionals line up to tell you about all the deficits in your child. Although his actual age was 18 months, they were placing him at a 6 month to 12 month old developmentally. To say the experience was overwhelming at the time is putting it mild.

During this time Julian handled all of the paperwork relating to medical issues. Because our insurance only covered 60 consecutive days of therapy we applied for a waiver to get Medicaid. It was approved and we were relived as Gage’s therapy cost over $40,000 the first year and decreased over the next three years, with the exception of vision as it was a free program covered a state program for the visually impaired.

Soon after Gage started therapy Julian quit the Big Corporate High Dollar job and began selling for my our little company. There was a need for marketing services for the industry he was in and we took a leap (a very big leap) that we could make a go of it, get him off the road, and make enough money to support our family.  His dad was having health issues at the time, so the timing was right. While on temporary insurance I found out I was pregnant with Quinn.

For a while during this time while we were getting used to working together Julian got more involved in Gage’s care but it became difficult because one person didn’t know the whole Gage medical/therapy/developmental story. While we both went to major appointments we didn’t both go to each therapy and follow-up appointment so we were relying on each other to report back every detail and it simply didn’t work.

Then Quinn was born and life as we knew it now revolved around kidney function and developmental talk (at 4 months old Quinn started therapy with 5 appointments a week and Gage was reduced to 4 or 5). There was no way to split of the responsibilities with two children needing the same medical/therapy care, but different levels and have all the bases covered so I took the lead. We always tackled new doctor meet and greets and treatment discussions together but mostly I was in charge of driving the car for scheduling, financial paperwork and getting to and from all appointments.

It was just easier for us. We knew as the medical management grew more complicated it would be more difficult to wing it with two of us equally taking on responsibilities for the care. Nobody owned it. It helped for us to have one person as the main contact and that contact was me.

Although it is stressful to be the one that has all the historical data in my brain (and 4 + jammed packed 3" binders) and all of the responsibility of the management it is less stressful because we know it’s harder to miss something thinking the other person has taken care of it. That’s not to say Julian isn’t involved either — Julian does meds most morning and a lot of evenings. He’s met all the doctors and knows where in the process we are with testing and med changes and if something happened to me he could handle the management - Quinn’s hair would frequently look like crap - but the medical management of the kids? He’d be all over it.

So, my Tip for the Day for families new to the medical vortex that is raising special needs kids - have one gatekeeper, but a really good gatehelper.

Camping in May.

I love this photo because to any other camper the weekend this was taken, we look like any other normal, healthy family.

When your child has serious behavior issues and a psychologist from a team of health care professionals wants to talk to you it probably isn’t best to have that conversation while the child is in the same room, out-of-control, an hour and a half into the clinic visit.

Probably the mom is going to be distracted. She’s probably going to be annoyed when you talk about needing the support of a trained specialist even after you just said you are in discussions with a certain behaviorist that you are comfortable with love because you went through this 2 years ago with his support - you are just changing the program - but you are on a program again and it’s helping. Even if at this moment it might not look that way.

And when the mom says maybe there is a time to talk, you know, when your out-of-control child isn’t WITH YOU TWO FEET AWAY THROWING PAPER AT YOUR HEAD WHILE YOU ARE IGNORING THE BEHAVIOR AS DIRECTED BY THE PROGRAM, she probably didn’t mean for a clinical appointment with you as an acting counselor - she meant, maybe you can step outside the room, you know, like next time, and the mom could bring someone to watch said paper-throwing, out-of-control child.

And maybe, just maybe… the General of an attack on Operation Nix The Seriously Bad Behavior doesn’t want the enemy to hear the war plan.

Geez.

While we were out to dinner (no kids!) Saturday night, Gage and our sitter left 4 VMs on my cell. I didn’t hear my phone because it sat neatly on the floor of a cute, little, loud restaurant where I was enjoying some wine and dinner inspired by Greek and Italian influences. We were enjoying dinner with friends who moved from the Big City to Suburbia. Beth and Darrell had a neighborhood party in Suburbia later in the evening so Julian went to the party with D and I hung out with Beth on the deck of The Big Suburban House…

For about 5 minutes until Julian called to tell me that Kate called to say there was "situation" at the house. Near the ceiling fan in the middle of our family room. It was nearly 10:00 when we left after reaching a plumber who would have the joy of collecting a weekend show up fee ($186 thank you!) from us for the pleasure of telling us what the problem was. And that would have been great - if he had actually shown up.

But he didn’t.

So, after calling him back and him letting us know at midnight that it would likely be another hour before he could get here. It had slowed down from a pretty intense dripping leak to drops, so we shut off the water to the house and went to bed.

We woke to a call and a plumber who cut 4 nicely shaped holes in sheetrock in various locations throughout our house to locate the problem. And while that all sounds pretty reasonable for an unknown leak in a 29 year old home it turns out it was just faulty caulk at the faucet for the shower. Final bill? $243.

The point of this story? To tell you that it was Gage who noticed the tiny drip in the corner of the room (he’s weird that way, noticing every little change in the house, like an OCD savant), then looked on our babysitter list of numbers and left the first two messages for me while Kate was giving Quinn a bath. And then he carefully arranged the bowls that caught the water coming out of our ceiling.

That boy. He’s a freak of nature.

She can be sa-weet when she wants to be, no?

I know you are interested to know how the Behavior Modification, Take 2 is going. And all in all it’s going pretty good. It is hard though to be on your game at all minutes ready for a comment of praise. Here are some of the latest…

• Hey! Gage and Quinn! Look! You are not hitting each other! Awesome!
• I love the way you guys are talking to each other! So nice!
• Excellent! You are being so nice to each other and to me!
• Gage, I love the way you are helping and not hurting Quinn!
• Quinn, thanks for not screaming! You are using your regular voice!
• Each one who takes their meds fast is awesome!
• Look at you doing such a great job listening!

It can be mind-numbing. Rinse and repeat many, many times per day. It does beat the alternative I must say…much less stressful around here.

The transplant nurse called to tell us Gage’s biopsy showed no signs of rejection. Apparently Jody’s well-behaved kidney is doing splendid inside Gage. And then there’s Ginger (Gage’s CLS). We love you. And thanks for yesterday.

Dear Diary,

Today was Gage’s three month biopsy - what a special day! It was nothing I imagined it would be! I would have been scared, but I’ve learned you can’t get scared about every little thing. I mean, that would just be stupid, because with chronically sick kids you’d just go through every day scared. Or ascared as we like to say in the South.

He was less than thrilled to learn they would stick a needle inside his body, where a perfectly functioning (so far) transplanted kidney was but hey! It’s protocol. The pros say there are reports that if you can find rejection in the very early stages, where it is very treatable, the long term prognosis is better. So we readily agreed! They know more about this kind of thing!

No food in the morning for Gage for an arrival time of 11:00am and a biopsy scheduled at 1:00om. A lovely gift was everything was on time. But Gage sure was hungry and thirsty. The best thing of the day was his Child Life Specialist knew he was coming and helped him prepare for the IV. Because even though you’d think Gage would be used to IVs being placed in his arm…he’s not! It’s always fun to stand outside and listen to him protest it. But this time the preparation helped him only have a small yelp through the procedure room door. It was great! Just a small yelp!

The IV meds to calm him down for the ultrasound in which they use to mark the body so they know where to put the needle to get the kidney tissue worked! He was just jello! How excited I was to leave for 30 minutes to grab a quick bite to eat. In a new cafeteria no less! And it was clean! What a bonus for me!

When I returned Gage was sleeping peacefully. As peaceful as I have ever seen him coming off of IV drugs! And lucky me, it’s been many times, so I’m used to it! It was short-lived because he cried for an hour after he was alert enough to know I was in the room.

And Diary…today my being calm and emotionally in check was extremely helpful! Because the doctor explains that when they did the ultrasound and marked where to insert the needle he turned to scrub in and they adjusted Gage’s bed by lowering it and the new kidney moved inside his body! Just moved! Making those ultrasound marks for the doctor irrelevant! Because when he inserted the needle he probably just tore through some muscle, making Gage’s recovery more painful. But then they did the ultrasound again and inserted the needle again and walla! A successful retrieval of kidney tissue! Test results tomorrow!

But wait, that’s not all, by now you can guess our stay was extended to make sure that the doctor didn’t put that needle in the bladder…because that would be dangerous of course. So, some additional meds to calm Gage down for another ultrasound and an extra blood draw - but don’t worry, Gage only woke a little bit when they stuck him in the other hand! No using the IV for the blood draw because of the special test they needed to do to make sure there was no internal bleeding from that little extra (free I hope) needle stick! Because that would have meant we would have been admitted!

At 5:00 Gage got the clean bill of internal health! And I got to put my hospital gown clad kid in the car with a sheet wrapped around him and away we went to the drug store for a strong pain killer to help with that pesky little extra needle stick!

And what a perfect way to end the day — with Gage sleeping on the floor right next to me because it hurts for him to walk up his loft bed stairs.

XXOO,

Julia

I have no idea what they are doing. But they do it a lot. In almost every batch of pictures I take, they pose. Strangely.

And with that explanation, I give you July 4th Performance Art by Gage and Quinn.

Obviously today leaving for a 9:00 clinic appointment with Gage I was full of hope. I was hoping that we could have a quick, clean appointment with no behavior problems that involved cleaning up something Gage pulled off a shelf or a wall.

We entered to find that today was the day that a new parking deck was opened for full use. This new deck also makes us go through the new entry to the hospital, which is lovely. It involved a few extra turns, a very long walk (had I known I would have used a wheelchair or stroller for Gage) which had Gage in pain, and arriving late. We were there for nearly two hours, which isn’t really a problem during a normal week, but dang, I was way behind on patience and stamina today.

After waiting some extra time to have labs drawn, the tech asked Gage if he wanted some numbing spray. He said yes, but when she said they didn’t have any, he lost it, then I had to step out because I was upset. Just at everything. Being behind today, not feeling completely well because of the remains of the stone debacle, Gage was upset, he would be getting to camp a few hours late, I still had to work and to pack and well, you get the idea.

When I returned to the room the doctor said he can have labs just once a week now and not to worry about getting labs today. I was very happy about this. This offer was a gift for Gage, of course, but I think they really did it for me. And I am eternally grateful.

One of the transplant nurses called me this afternoon to check on me. And it brought tears to my eyes because of her compassion. A huge thanks to her. I hope she knows it wasn’t anything that happened today in particular, or anyone’s fault, it was just that it all happened today.

But we’re packed and ready because of my friends and family. So we’re off…to Minnesota!