I had no idea what kind of weekend Quinn would have when we started out on an innocent camping trip. Leaving school a tad early with excited kids was a great way to enjoy the day and set up camp early. It helped immensely to set up camp and eat dinner before the thunderstorms hit. But it was all still good.
At the end of the week Quinn had been coughing a lot. The nurse at her school had called on Thursday and said her lungs sounded clear and asked if I was giving her cough medicine (um, why yes I am…thanks for asking). Friday was a better day for her and she was thrilled to go camping. Turns out the lovely side of allergies is sometimes an ear infection. Forget that she spent all weekend IN THE WOODS where the pollen had a straight line from point A to the point in her nose. Did she say a word? Not until Sunday morning when she said "my ear hurts" did we know. "Raging" was the word of the day Monday when discussing her ear infection in her pediatrician’s office. "In both ears."
And last month when I addressed the balance problem – complements of OMA – I was tempting fate. I was laughing in the face of the Picture Gods. Taunting them like there was no tomorrow. It turns out that an already injured tooth, a slippery slide, and slow responses of the hands when falling onto your face mixed in with a hearty dose of OMA, can cause teeth to be knocked loose. To the point of having to be pulled. Out. With. No. Novocaine. I know you are thinking "what kind of holistic mother is she? That she would promote a drug-free tooth pulling experience?" But it was the doctor’s choice. He intelligently had me step out of the room, applied topical anesthetic, and pulled. Took all of about 2 minutes. With some kind of "pliers" Quinn said. And Quinn? No tears. She just said "it hurt a little bit" and happily picked out her TWO treats out of the treasure chest while I regrouped. She is cute with a toothless grin. That she will probably have for at least a couple of years. She’s resilent and has a high tolerence for pain that is for sure.
If it weren’t for the kidney disease, medicine, OMA, balance issues, orthodics, and a brother who branded her with the end of campfire stick on the back of her hand, Quinn would have it made.
These were taken during the first week of Quinn’s life. It was three days after Quinn was diagnosed with ARPKD and I remember that IT WAS HORMONALLY IMPORTANT TO ME to make sure we celebrated the birth even though we were so sad about the diagnosis. We knew her kidneys were working but we didn’t know the percentage of function. We were trying to get into see a pedicatric nephrologist and having trouble. I remember our peditrician calling us at home this evening because she’d been out of town when her office got the news about Quinn. We were taking these photos for her birth annoucement. I love how gently Gage is holding the blanket. And I love her serious look in the photo by herself.
Gage and Quinn had labs last week. The easy kind. The kind where we are in and out in 15 minutes. Even if they both throw a fit and scream during the Drawing of Blood at this lab it would still be better than our 2 hour adventure of the Drawing of Blood at the local Children’s Hospital. It’s really all perspective isn’t it?
Both nephrologists said "stable" in their notes back to me. For those charting along with me at home: Gage – BUN 58, Creatinine 2.5, Quinn – BUN 35, Creatinine 0.8. Their liver numbers had been seriously high but now are just high. And that is good. Stable even. See? It is all the perspective in which we look at the situation.
For the first time in a long time Gage doesn’t need labs for 6 whole weeks. Quinn 8 weeks. I think that’s good.
So the meds are working. All 17 of them. I hate these meds. I love these meds. They are doing what they are supposed to.
How about an update on a behavioral front just because it’s fun. Gage is doing better in his new class. We get a daily report from his teachers and therapists about his behavior and participation. Check mark: Good. Line: Needs Improvement. Long ago we stopped with the X: Bad, because it was playing into the attention part of his problem. His notes from his new teacher usually say he needs "re-direction" or "reminders." There’s been no aggression or flat out disrespect since he’s been moved out of the other classroom. Not bad.
Yesterday she sent a note home asking that we talk to Gage about not "making noises" in class. She said she has a couple of kids that hum already and that his "da, da, da, da, da" was driving her crazy. When asked to stop, he didn’t. Yeah, I know what that’s like. Welcome to my world. I will say this though: he’s not tripping deaf children in the hallway. That’s something.
It’s two months past your 7th birthday, but I’m sure you won’t mind the timing of this, since you are the direct reason I don’t have time to write.
You’ve had quite a year between 6 & 7. Some good, some bad. You ended Kindergarten, Take One with a good start to Kindergarten, Take Two. For the first time ever, you started the school year somewhere in the middle developmentally with your peers.
In late June, you were getting more aggressive and it was not fun to be around you if you were the weaker one. It became apparent that you either needed to attend boarding school, appear as a guest on the show Nanny 911, or we would need to re-direct this behavior with the help of a trained professional. Enter in Dr. KATB (the man who Knows All Things Behavioral). By July we were instituting The Program, and things were slowly changing. It was not a fun process I tell you. All of those list-keeping and program-tweaking behavior modification changes on our part and all.
You entered school in a good place behaviorally and we had high hopes. It seems you would prefer to keep us off balance by testing us to the very core. At times we thought you won. But it turns out that we, in fact up to this point, are smarter than you (take that
little boy), and after months and a couple of thousand dollars, switching of classrooms, some tears (from Mommy), and a well-rounded program that is so complicated we need charts and graphs, we have found what works for you. It turns out that it is a mix of many programs, not just one, because you are complicated like that you know.
You had some good times too. A couple of camps over the summer, visits to see cousin Andrew (who says “Right Gage?”
after everything he says), swimming lessons, tutoring, a week at the beach with Andrew and his ‘rents, actually playing with your sister, instead of teaching her the skills of a boxer, zoo trips, garden trips, aquarium visits, and the not-so-good times that have to do with those kidneys we lovingly call our mutant genetic history.
You are on a total of 11 medications now. Most of them are twice a day and of course that weekly shot that we both love so much. I love what the shot does I must say – it gives you energy to play. While you have spent the last year and a half running from me, having to be wrapped up with my legs and tears sometimes from both of us you no longer fight them. About a month ago you said “why do you pinch me when you give me the needle?” After I explained that I wouldn’t have to pinch if in fact you weren’t moving so much, you wanted me to show you how I would hold your arm if you didn’t move and I could literally see your mind at work. You actually let me give you the shot with no moving, no crying, and it was over. It only took you 18 months to come to terms with it all. That’s about right for you.
I used to think when you were a baby that you were an old soul. It turns out that your slow turning eyes – what I thought was soulful, deep thinking was really OMA. And probably your soul has never been here before. And you have to experience it all RIGHT NOW OR NOTHING IS RIGHT WITH THE WORLD.
Your biggest achievement so far into your 7th year has been your starting to read. I didn’t believe your Interrelated Teacher last March when she said it would just “click” this year. In fact had she bet me $100, we would have not been able to pay for your swimming lessons. She was right. You starting recognizing words and it took off. For about two months you’d been reading the basic sight words in easy reader books. Now, you are starting to actually sound out letters and words. It’s all so magical to watch your brain cells grow. It’s a joy to watch you figure out how to read WHAT and WENT. Seriously. Some of the best memories I have are reading with you before bed. And picking you up after school the day you earned the Accelerated Reader 10 point button was a moment I’ll never forget. You wanted me to take your picture when we got home and you made Daddy come up from his office to share in the excitement.
You love to play outside and climb trees. You love to play cars and teacher. You love to garden and sweep. You love to clean and organize. You love to play funny little tricks on us and cinnamon and butter sandwiches are still your favorite. You don’t like meat. Or veggies. And soon, a nutritionist will meet her most challenging client ever – you
.
You are an amazing human. You’ve had some tough times in your little life. But somehow you act and think it is all just normal. Because I guess for you it is normal. Since you were three, we’ve talked about the medicine you take and that your kidneys don’t work like ours. And recently as your kidney transplant is no longer in the distant future, I’ve started talking to you about you getting a new kidney. I see you try to wrap your little mind around it and I know you just can’t right now. Just know that we’ll do whatever we have to do to help you find your way through your challenges.
And Gage, while your uncertain future is my greatest fear in life, your life and how you lead me to help you live in each moment is my greatest achievement. You’ve taught me so much more about the world and faith and persistence than I would have ever known without knowing your little soul. Thank you for being in my life.
I’m the girl in back on the swing with a toddler named Vanessa and my red and tan house is in the background. Vanessa lived across the street from us and I was a Mother’s "Helper" even though I’m not sure at age 7 (go ahead, figure out how old I am) I was much help. Vanessa’s mom paid me something like 10 cents an hour to play with Vanessa. I loved her. For me, the youngest of 4 girls, Vanessa was my chance play big sister. My relationship with her was special and one of my fondest memories from my childhood.
Now meet Becca. I dug out my old picture after seeing this one of Quinn and her special friend, Becca. Becca is actually much more than a Mother’s Helper – she babysits and entertains and brings arts and crafts and makes puppets out of paper plates and masking tape and she let’s the kids pick from a treasure box she brings with her! The kids love her. But she and Quinn are especially close. And I think even when Becca is 17 and Quinn is 8 they’ll still have a special bond. I think Becca loves the way Quinn looks up to her and how she has the power to make Quinn belly laugh. That’s big.
Gage is a ham. He loves to be photographed. Finally, the phase of him only making funny faces or angling his body like a contortionist is behind us. He likes to have his picture made and will smile on command these days. And because I have an inherent need to chronicle their lives with pictures (that’s another post entirely) and I’m a very novice scrapbooker, I take a multitude of pictures.
I took this one during our week of what I call “Camp Mommy” – where I realize it is Spring Break* and it’s probably not best to be inside letting brain rot set in by sitting in front of the television. So, we’ve had one big fun outing scheduled per day. On this day we were at the zoo. And after downloading the photos of My Little Monster Cherub, I realized I had a picture that summed up Camp Mommy week completely.
Experiencing this is so much better than work.
*It is NOT Spring Break in Mommy’s world…clients still want their projects done.
The letter came. Certified. Good news rarely comes certified. We’ve been waiting to hear about Quinn’s secondary insurance, Medicaid. The answer is no. She doesn’t qualify under the State’s new criteria to get the Katie Beckett Waiver, and now, we only have our primary insurance for her. Which means that we have to pay everything that our insurance doesn’t. All co-pays for appointments and meds, meds not covered, physical therapy, orthodics, specialists and probably some tests thrown in there for good measure. We probably won’t appeal it because I don’t think we have a good case based on the new criteria. And really, I just don’t have it in me to fight. Haven’t heard on Gage’s, and his initial denial appeal was sent in first.
Gage: “The song with the presents.” YOU KNOW! WITH THE PRESENTS!”
And me, naming each CD we have in the car that he likes…
“On the Notting Hill CD?
“NO!”
“Gage, I’m trying to figure out which one…is it on the Johnny Cash CD? You know, the one with Ring of Fire
on it?
“No, that’s not IT! It’s the one about the presents!”
Me: “On the purple CD? With the kids singing?”
Gage: “It’s the party one”
Me: “Oh, is it Let’s Get This Party Started?”
Gage: “Yeah! That’s it, the one about the party and presents!”
Me thinking:
Um, yeah, that makes total sense!
This happens about 3-4 times a day and is typical dialogue between us about various items. Gage is 7, but he doesn’t think like a 7 year old. Developmentally he’s probably more like a 5 year old. He knows he should remember something or know something but can’t quite grasp it at the moment and he gets frustrated often. At least a few times a day I have to interpret for Gage, to figure out what he is talking about before he realizes that I don’t know, because I want to ease his frustration. It makes for interesting conversations that begin like this – with no prior connecting dot, I might add – from Gage:
“Remember that house with the steps?”
“Mommy, do you know where that thing is?”
“Can we go to that playground again?”
“We talked about the flecting pool at school and we see it when we go see that White House” (he meant the reflecting pool that MLK is buried in and where Mrs. King was just buried as well, but confused it with a trip to DC)
“Mommy, can we have that stone?”
That was just this past weekend. And the ones that I remember.
Life with two special needs kids…if you call kidney transplants and navigating the special education system special. I must admit that these kids are special and extremely cute. And mostly fun except when they make me really tired.
