Every year at the beginning of December the kids have their annual testing at Children’s Hospital. Tomorrow we’ll spend about 6 hours their getting labs done, echocardiograms (heart) because of the high blood pressure, and renal ultrasounds to check the liver for cysts, (there are too many in the kidneys to count) and see how large the kidneys have become in the last year.

They’ll spend their morning at school and then the afternoon at the hospital. We’ll sign in for out patient services and be on our way to three departments, a snack in between, a visit to Nemo, a visit to the Chapel, then we’ll be done. Most likely, just in time for dinner.

The appointments are okay. And hey! There’s free entertainment – movies, story tellers, clowns and video games! The kids are used to the hospital and the tests now, and really, as they get older, the appointments are less stressful. On them. As their parents, we’ve not had the luxury of getting used to the testing because we know it’s just a stepping stone to more.

I’m usually freaked out a few days before and a couple of days after until we know the results. The results will come from Dr. Matter of Fact, and good or bad, it will be a relief to know where we are in terms of heart health, kidney size, and kidney function.

It’s hard to articulate just how it feels to wait for those results. To sound cliché it’s like “a time bomb” or like we’re “waiting for the other shoe to drop” but in a not so cliché way it’s like we are playing an instrument and we can’t hear the music at the time we are playing. When we do hear the music, it is either like listening to Mozart or a bad heavy metal band.

Other clichés we’ve heard and we’ve said at a time like this:

Time will tell.

No news is good news.

The waiting is the hardest part.

And our cliché to describe our parental experience of waiting for test results:

We’ll hear the music when the doctor calls.

Quinn had a little stomach bug on Tuesday after school and started vomitting. She went to bed early after having a few sips of Sprite and was up several times during the night getting a sip…fine, taking a gulp…throwing up. Wednesday she was taking small sips and resting well. By 4:40 that afternoon she didn’t want to drink and I could barely wake her. By 5:00 I was calling friends to have someone sit with Gage while I took Quinn to the Children’s ER (Thanks Linda, Kate and Grandma).

By 6:30 we were there and being checked in. Because of her kidney status she was moved to a treatment room quickly and within an hour an IV was started and labs drawn. After the ER doc called our nephrologist to discuss which Children’s Hospital Campus (we’re lucky, we have two here) she should be admitted to it was done. Our night and following day would be spent at the hospital (were home by Thursday night - that’s when Kathy took care of us because I was beyond passing out - but that’s not the point to this entry).

I brought a couple of things to get us through a few hours, but not a night and certainly the next day. And I certainly couldn’t prepare for ME CATCHING THE STOMACH BUG AND VOMITTING ALL NIGHT after Quinn’s addmission to our comfy 4th floor room. Who knew that Children’s Hospital would provide me a toothbrush and toothpaste - very helpful and appreciated by the way. It would have been nice to have been able to plan this dehyration episode WHEN MY HUSBAND -HER DADDY - was in town.

Even though I was sick, the event of being admitted to the Children’s Hospital was not lost on me. I had a little freak out session thinking about our future with Gage and Quinn and frequent hospital stays throughout the course of treatment and transplants and aftercare. It was if I was attending orientation. I learned where the ice machines and late night vending are located. I learned that they give parents clean sheets, pillows and a decent place to sleep on a pull out sofa bed, they provide toothbrushes and toothpaste. I learned that parents can order ROOM SERVICE for their children and for a nominal fee, for themselves as well and that the grilled cheese sandwhiches are yummy. I learned that there are ins and outs to parking cheaper, there’s free internet access 24/7 and schooling services for children needing to keep up with their studies.

I admitt it. It was difficult to stay only in the moment of the current medical crisis of dehydration and not look forward transplants X2. It was just a tiny little peak into the future. And it scared the crap out of me.

Gage is in his 2nd year of Kindergarten. It’s going much better than last year, thank you very much.

In order to present a complete picture I’ll have to look back. Gage started missing milestones at about 8 months old. So I have known since he was a year old that he was developmentally delayed. Regrettably, he didn’t receive any therapy until 19 months. He’d been followed by our pediatrician, and at his one year appointment was referred to an ophthalmologist THAT SAME DAY for his lagging, slow-to-focus eyes and to a neurologist within that month for his slow gross motor skills. Within 1 minute the ophthalmologist diagnosed him with Ocular Motor Apraxia. She casually said he’d be a little clumsy in his young years, but develop visual coping skills by the time he was five. She said he probably wouldn’t be great at sports because of visual tracking. As you might imagine we were sad, but not devastated.

A month later we visited our local children’s hospital and were rotated in to see neurologist Dr. Last in His Class where we explained that Gage had been diagnosed with OMA and was still belly crawling, not babbling, no interest in standing, slow to blah, blah, blah. Dr. Last in His Class told us that “some kids are just slow walkers and talkers.” That we should just let him develop at his pace and should follow up in 6 months. Six months later we found ourselves rotated in (luckily) to neurologist Dr. First in His Class who took one look at 18 month old Gage, said “this little one needs therapy” and sent us on our way dazed and confused with a prescription for evaluations on all fronts. Within 30 days Gage started an aggressive schedule of 7 appointments a week and life as we knew it changed. We were raising a special needs child.

Gage was three when Quinn was born and they were diagnosed with ARPKD. We proceeded pretty much as one would expect - keeping up with doctor visits, therapy and evaluations, and doing the normal things families do like sending little ones to church preschools. Gage’s first year (3 year old preschool) was magical. A teacher who cared about the little boy with the funny eyes, who couldn’t be understood 50% of the time, who was the only child that wasn’t potty trained and had trouble connecting with other kids because he could only be understood 50% of the time. This teacher fostered one of Gage’s special friendships that have endured a move away from the area and this teacher was mindful to check in with me about Gage, offer suggestions about helping him, making a special point to keep me informed of Gage’s achievements. I think fondly of this year because of this teacher.

Preschool – age 4 – not so great. Gage didn’t seem to mind the teacher that year. To him, she was friendly and his needs at school were met. I had great hopes for input about Gage’s abilities and ways we could help him since this teacher was studying FOR HER MASTERS IN EARLY CHILDHOOD EDUCATION and would be an elementary teacher the next school year. She had absolutely no interest in learning about Gage’s special needs, in helping us help Gage or communicating where Gage was developmentally. Perhaps we were assuming she might have some input since SHE WORKED THERE FOR YEARS with 3 year olds. Gage seemed to still have a wonderful time, but was lagging even more in the educational area compared with other children. It was then that I thought about holding him back from entering Kindergarten and then that I knew he’d have problems. Included in my evaluation of this teacher was this note: “I’m disappointed that Ms. Seeking Her Masters didn’t take more of an interest in Gage’s special needs. I should thank her as she is my wake up call to make sure I fight harder in the coming years for Gage’s educational needs.” Over a year later, I’d heard she’d spoken with another class parent who I am friendly with - crying - wondering why I’d evaluated her like that and what she did to upset me. Um…okay.

We decided to move to an area that would have schools better equipped for Gage and Quinn’s special needs. We visited three schools and ruled out one (that is a very interesting story about a vice principal at a public school that actually said “this might not be the right place for him” as if there was a choice for her to take him when his educational IEP said he was to be mainstreamed) and house hunting we went. We settled in two weeks before school (year 2004-05) and Gage started Kindergarten.

Even with all our efforts, therapy, special ed resources, he struggled. It showed in his uncompleted work, his behavior, and his progression of learning compared to his classmates. In October of last year we met with his teacher for a conference. Because I asked, she said yes, he needed to be held back. This was October. Six weeks into the school year. His teacher (thanked here) helped him hang in there and he finished the year at about a preschool level of knowledge.

When we started telling people Gage would be repeating Kindergarten, almost every person I told felt the need to say “my sister’s best friend’s brother’s son had to repeat kindergarten and he’s doing great now!” ending it with “it was the best thing ever!” as if they feel I need reassurance that we’re doing the right thing. The only people I believe know what they are talking about are parents who HAVE ACTUALLY HELD THEIR CHILD BACK IN A GRADE. Listen up people…I KNOW it’s the best thing – he didn’t know the alphabet at the end of Kindergarten.

I think people try to relate a story to make me feel better about the decision to hold Gage back. I know it’s the best thing for Gage in the big picture way, if you will. But if I’m honest with myself, it sucks that there is a need for being held back, and that he lost two friends who moved up, and this year, I’m sure to get those quizzical looks when people learn he’ll be celebrating his 7^th Birthday. Those looks lead to questions. And on any given regular day it doesn’t bother me to explain to anyone who is interested about Gage’s educational and medical circumstances. But the fact that I have to is just plain irritating.