It’s your birthday. You are 5 today. I can’t believe it’s already the end of September. In 2006.
Sweet Quinny B. You are such a character. You are every bit a fireball and I can’t wait to see you when you are 10. When you are 20. You have a feisty personality that will bring you far in your life. It’s what will help you with your challenges with your funky eyes and your not-so-great kidneys.
And let’s talk about your kidneys. We’ve always know that your kidneys would be problematic in your life. We learned early on that you would need one maybe more kidney transplants in your life. We learned that you would always be taking meds, and you would always have strong relationships with many doctors. You have taken all of this in stride so far. Just last week your Gagey had a catheter put in and began dialysis and you said "when will I get a catheter?" and also "when will I get to do dialysis?" Perhaps it’s a blessing that you see it so positively right now. Perhaps that is what protects your little head from grasping what in reality is going on with Gage.
You are a smarty girl. That is what I call you when you try to read or you pick out letters from signs or talk about something you learn – my Quinn, The Smarty Girl. Every week for school on Friday you have to bring a bag of items that begin with the letter you are working on and you are very good with your bag work. It’s fun to watch your brain cells grow right in front of my face.
You love baths, reading, running, laughing, and jumping. Well, you just have learned how to jump in the last few months or so and when you did and both of your feet left the ground you had a look of amazement on your face. Smiling your biggest smile. One tooth gone and all. It’s pure joy to watch you learn something physical. Your therapist K really is the one that pushes you to try new things. You think you are playing but you are really working hard. K is sneaky that way.
Remember that feisty comment? That is both good and bad. You have a little temper. Not good. But you are extremely tough with all that is your life. Very good. Watching your brother go through surgery and dialysis and eventually a transplant and you knowing that you will as well is nearly splitting my heart in two. I pray for Gage’s well-being and safety and for your peace and understanding of the process he is going through. One of my biggest fears right this second is for Gage to have complications of any kind in part because I don’t want you to have to be scared thinking it could be your complication.
I believe in fate. I believe that you and I were meant to be together. I believe that I am supposed to learn many more things from knowing your soul. Seeing your smile and feeling your hugs and kisses are the highlight of my day and as long as I live they will be with me reminding me that all is right with the world. Thank you Quinny B, Smarty Girl for adding so much to my life. My heart is bigger because of you.
Gage says he likes dialysis for the food he gets afterward (apparently P0ptarts are dialysis/kidney friendly) and because he doesn’t have to get shots anymore or lab draws with needles. They do everything from his catheter.
The boy does have his own perspective, doesn’t he?
I have many things I need to write about. None of which is really a coherent thought at the moment. So this will be my TO DO writing list. Feel free to add to the list or put in a vote for which topic should be first.
The effects of a sick child on a marriage and why people divorce. Why I get it.
Time. Time. Time. How to balance work and the new life, and life. And when to share with clients.
What I think about people who don’t want their kids to wear braces on their legs and feet to help them walk because of what other people will think. And why it pisses me off.
Gage’s amazing resilience and coping skills. The ones I didn’t really know he had until this past week.
The paper work. The schedules. The things I need to know. And how I’m in awe of people who do it with a lot less support than I have.
Keeping up the appearances of normal in our not-so-normal life.
Reality bites. My list of things that I hate about all of this.
Reality bites harder. My list of things I love about all of this.
School and behavior now that Gage is feeling good enough to crawl on the floor in the hallway and get all the kids fired up.
Gage is doing better today overall. The color of his face looks better, less yellow and pale and his energy is up for a longer period of time. He had one bout of skin itching that didn’t seem to last as long as it had in the past.
Yes. He’s noticeably better. His skenergy is definitely better.
Gage’s first dialysis. Honestly, a parent warned me that it was probably harder on us parents and she was right (Thanks for that Cindy). Let me tell you they move you from person to person for rules, instruction, paper work, school issues, scheduling issues, and they want you to understand everything that is going on so they want you to watch everything. Granted, we wanted to watch it all.
Gage is extremely reslient. I wasn’t so sure 6 months ago. But I am now. He’s had an intense week and yet somehow he still finds fun and joy and laughter in the expereience. See this photo? He is smiling. Seriously, he is smiling.
And I’ll leave you with this: we actually have the option to arrange for transportation for Gage to and from dialysis, in which he would be picked up and dropped off after dialysis. We don’t even have to attend. If I had only known it could be so easy…
Gage was a trooper today. We woke up at 5am to be there for an 8am surgery. The doctor was on time, the nurses were charming, the clowns were funny and the pain killers worked.
The procedure went off without a hitch. Gage was fine. Just fine. He awoke saying he didn’t remember the cath being put in and later asked if they also put in his new kidney. I told him that I would prepare him and he will know if he is getting a new kidney. He loved the Gatorade and the 5 servings of slushees. Orange flavor if you must know. Just like Ugly Orange Kitty.
He is bothered by a little pain right now, but nothing a little L0rtab won’t fix for him. Or for me for that matter. Just kidding. He’s out of school until Monday. Monday is also the day we hope he can return to karate.
I bet you’d like to know when he will begin dialysis. Two days. This Friday. We will have the afternoon slot and Dr. Caring is hoping that he will feel better over the weekend. I am praying and hoping. And I’m throwing up some words to the kidney gods as well.
We met with the general surgeon this afternoon and we were directly sent to pre-op. They had an opening for 8am tomorrow for surgery so we took it in the interest of helping Gage feel better as quickly as possible.
He will be under general and the whole thing (wheeled in and out) is supposed to take about an hour. He’ll recover and we hope to be discharged in about 4 hours.
Julian is still leaving town tonight. Please do not freak out.All is under control. I’m okay and Julian is okay with this decision. It is best for Julian to be taking care of work during this non crisis moment and to focus on some business things while what we are doing is a very routine procedure. It was hard for Julian to leave, but I feel extremely comfortable with what the surgeon is doing and am keeping focus on what the end result is – dialysis and a better feeling little boy. Because this kidney failure is kicking his ass.
I’ll let you all know what is going on when I return from the hospital tomorrow, which I hope will be around the lunch-ish hour. I expect it all to go as smooth as can be.
On the same day there are so many confirmed changes for Gage’s life, we lost our Addy. Addy was in doggy foster care with my sister and her family. So we often say she had two Mommas. Goodbye Addy. You were a great dog. With a goofy smile and even though you had bad breath because you used to eat your poop, we loved you. Your two families will miss you.
We had the Run & Walk for PKD even this weekend and raised over $70,000 for research. I can’t tell you what it means to me to raise more money than a research grant requires. And almost as much as we have in 4 previous years for the event. There are no words.
I hope for rich blessings to the 80+ people that attended to help or participate who are connected to us. Family, friends, friends of family, teachers, therapists, classmates. How do you thank a group of people who just want to help out? They do more than help. They give me hope. All is right with the world for that moment in time when people come together to help a cause that is bigger than themselves.
We’ve been preparing ourselves that Gage would be beginning dialysis ever since our transplant evaluation day just about two weeks ago. This past Friday we had labs done and while I knew they would be high, I didn’t expect them to come in at 5.1 creatinine and 97 BUN. Call it Mommy Hope. Call it Parental Wish. I guess it’s appropriate that after the high of the event this weekend we’d learn the low of Gage’s next step in the progression of this disease – dialysis. The D word. Dr. Caring hopes that this week Gage will see a surgeon and have a catheter put in near the clavicle. Currently we’re not sure of the weekly schedule but it does take about 15 hours out of his life. That certianly is a low. My goal right now is to make the best of that situation and those 15 hours. I’m open for ideas.
Sunday after my very good friend Leslie helped me weed and plant herbs and mums we let the kids along with her very pinchable cheeky grandson play in water from the plant water long handle thingy. It was a pleasure to sit back and watch the kids romp in water for an hour on a Sunday afternoon. It was healing.
We were at the time just 5 days from the realization that dialysis was probably in our future. And this Sunday of sprinkler fun was just what I needed to remind me that the kids still need to be kids. That along with the responsibility to be their best advocate by being prepared, organized, diligent and when necessary a fighter, it’s also my responsibility to make sure they have spontaneous fun regardless of the time of day (5pm) and my first instinct of "absolutely not!"
They sure did have fun. And we counted it as a bath. A win-win for all.
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.
“Let’s face it. There’s something very mystical about taking an organ from one person and putting it back into another.” Dr. Robert Montgomery, Sr. Transplant Surgeon, John Hopkins
and for your peace and understanding of the process he is going through. One of my biggest fears right this second is for Gage to have complications of any kind in part because I don’t want you to have to be scared thinking it could be your complication. 
