We have our sea legs back. We are in the boat with transplant. I should know better than to journal at the end of an eternal night!

We are very excited to see Gavin and to have made it to this point, we have been blessed beyond words. May this new kidney give you that touch of extra spunk Gav and may recovery be quick! It’s time you get to live your life at 110% just like your sister! I’m sure you’ll be a bolt of lighting just like your sissy!

Jill

She should be called “mother-less” nature for daylights savings time, no true mother would mess with their kids internal clocks like that! Wow, we have been in a whirlwind of chaos…we have the earliest Christmas decorations up so that they will be in place at home upon our arrival home from the hospital…yes that means it’s a go, November 29th, Gavin will get his new and improved life (as long as he can kick this cold he has)!

Lauren got a really severe respiratory cold in the middle of the Bee Movie…we had her in urgent care and the ER throughout the week. She was so sick she told me that “even my hips won’t wiggle.” Now that’s one serious cold if it dampened her beat! Lulu is finally on the mend after a week of sleepless coughy nights! We have started her up on an allowance and daily chore wheel so she can start getting a concept that things cost money. She advised us that she was willing to do chores as long as she didn’t have to “work as hard as daddy” or “work for the man.”

Gavin’s been workin’ hard on his vocab. He is a butterball talking machine! It’s kind of fun, he’s in the stage where you are constantly trying to get them to repeat things back to you (no he cannot say supercalafragilistic, I asked him already). We have set up Christmas in the house already so it’s all put together for when we get back, and he thinks that every shiny round ornament is, of course, a ball. He does have quite the wicked arm (of course Jay is already thinking he is going to take the Cubbies to the series while I on the other hand, believe he would be better suited for the Brewers). He is loving the dancing animals that sing a song and move, he is starting to bop a little standing up, and will pretty much drop a beat on demand!

He is back to his vomiting, but in a couple of weeks, post transplant we are hoping that will go away as well. Needless to say we are in lock down to try to avoid any further germ exposure so close to transplant…immediate healthy adult family only.

On a serious note, there are so many many people that we are thankful for this year…his doctors (Wigton, Basir, Kym, Ehlert, Pan, Van Why, Bartosh, Neary, Anderson, Balcom, Kryger, Serogy, Sollinger, Conway, Erickson, Salvatierra, Concepcion, Comisky and Forester), his nurses (Karen, Linda, Jan, Dawn, Jackie, Emily, Mary Lou, Amy D, Amy M, Norma, Rick) our families, friends and strangers that have shown us that life is a beautiful thing and although this road has been lonely at times, we never walked it alone. Thank you all for your constant support—- it’s taken the world to raise this child!

Better get back to the preparations. We have so many, many, many things left to do! May you feel loved and equally blessed this Thanksgiving!

Jill

My mind lately has reminded me of my music collection…eclectic and cluttered. When I realized I was paying more attention to the Target toy ad than the happenings in Pakistan, I knew that I needed to check myself. It’s so easy to get so lost. Thoreau said it best, “simplify simplify”… I need to find my Walden Pond.

We have a date, a very tentative one, November 29th if the stars so align (or the specialists agree)…we did not get the news back on his last blood test that we had hoped, so it leaves us in a bit of a holding pattern. I feel like whispering this, as to not jinx it, but Gavin is the best that he ever has been. He is strong, and eating(only a little, but we’ll take it) and the vomiting has stopped. Gavs is attempting to stand on his own and walk about four steps at a time to me. He gets so puffy proud of himself, like the Packer fans did last Sunday. He finds himself particularly funny and throws his head back to laugh at himself, I guess we will have two hams this Thanksgiving!

Lauren let me know that she is starting to “get into inappropriate things” (i.e. bathroom humor is a big hit). The other day she said “dang it” and I said that we should come up with a different word, “how about bubble guts instead,” I said and she looked at me and told me that it was a “very inappropriate” thing to say that. I told her that if that’s the case she should love it—-hence I hear “bubble guts” about thirty times a day! She is coming off of her sugar high from Halloween trick or treat and is wondering when Thanksgiving will squeak by so that we can get to Christmas already. She is obsessed with Johnny Cash’s “Burning Ring of Fire” and we are putting an obscene amount of holds on his CD’s from the library.

Jay and I had an over over coaching moment (again) last weekend when we took the kids to the church community day with a rock climbing wall…we strapped Lauren in so she could get her climb on, and proceeded to try to “coach” her through it, she turned around to hear our words of wisdom and fell off. You’d think that we would have learned our lesson with the big wheel race…but finally it hit me today…some things as a parent are left better unsaid, and some things they have to do on their own. That’s just tough to do, let them do their own things, make their own mistakes, and climb their own mountains.

Jill

We went to the emergency room last night, Gav’s body temp dropped to 94 and his pulse was really low. He was sleeping and woke up vomiting violently, when I picked him up I felt how clammy and cold he was. I started to panic, we unhooked him and spent the next four hours in the ER.

It’s amazing how abnormal things can become normal when you live with them long enough. I can do dialysis in my sleep, and sweep the reality of his kidney disease under the carpet so I can function on a day to day basis, but it’s these moments – when the world seems to stop and get hazy, when the reality that we are always just a step away from losing him, that it hits you how precious life is, every second of it. You think their are guarantees, promises, but there are no such things. There are moments, moments that are here and gone that you hold onto, and that is all that you can truly hold.

Gav is doing good otherwise…he is starting to take off on his talking and it’s so exciting! He knows all of his species of balls, football, basketball, and my favorite of his – “Bay”-Ball (baseball). He is starting to sign “all done” and “bird” and can say “Pop Pop”, which just makes my dad fall even deeper under Gav’s control! It’s so funny to watch him because he is just like a little bundle of love and is starting to like some independence, as long as you are still watching him. He’s starting to do the push hands away, “I can do this myself” business. He’s trying to explore just about everything, so we are getting to see a lot of that hot headed temper of his.

Gavy wanted to give a shout out to his buddy Gino who is now on Milwaukee Channel 12…just proves that good things happen to great people!

Lauren is busy teaching me about life from her four years of experience. In our neighborhood, the kids “ghost” houses (the kids run around and ring the door bell and leave candy and you hang the ghost in the window). When the door bell rang, Lulu meandered down to see who it was and I told her we got ghosted. She looked at me and put her hands on her hip and said “did they ring the doorbell and run?” I told her, “Yes Lauren, and they left this bag of candy.” Lulu said, “Mom, (sigh) that’s ding dong ditch (she turns and goes back upstairs thinking about all the ways that her mom doesn’t get it).”

She is starting to get interested in handwriting and has officially written the word MOM which is very exciting. We have the letters down, P, M, O and L and somewhat a U.

She got to ride Rosie (my mom’s horse) this week so we are on the we don’t need a pony detox.

With Halloween right around the corner, I have to admit I am just a smidge bitter that we aren’t on the road to recovery and still sitting without a date. We go in for labs next week Monday and hopefully we will learn more about that. We also go for his wrist follow up, so hopefully that all healed well seeing how Gav was pretty much not into wearing the splint.

For Halloween, Gav is wearing an Elmo costume and Lauren will be the princess that she is, Cinderella. It’s fun to see her getting excited for trick or treat, but she has already started drawing pictures of Santa and looking at the doll catalogs in the mail.

Jill

Raising kids is so much like the game show deal or no deal. I am constantly playing it with Lauren and Gavin…we can go to the park if you pick up your toys, deal or no deal? You can pet the dog if you stop pulling your sister’s hair…deal or no deal? I’ve been trying to play it with God; you give him a successful kidney transplant and I will do whatever you want, deal or no deal? It’s pretty much useful in all aspects of your life.

Our little goblins are asleep in bed with thoughts of lollies, candies and smarties dancing in their heads. We are finally starting to bounce back, small gentle reminders that there is hope and good things ahead make me feel guilty for stumbling so hard. Gav is tough and brave and he will get through this. All you need to do to get a reality check is spend fifteen seconds in a children’s hospital to know how lucky you are.

It’s been a busy month: surgery, ear infection, liver enzymes, vomiting, cold, canceled transplant, fractured wrist, vomit on catheter which required an emergency switch out and a parasite…and poor Lulu just got the stomach flu. Ah, cold and flu are upon us…let the good times roll!

Gav is obsessed with walking right now and pretty much demands two fingers at all times to escort him. He is so determined that he actually got a small blister on his little toe, but remains unphased by it.

He had a rough week but is starting to come back ‘round to the healthy train. Within a week and a half Gav will be on three different antibiotics, some very strong ones. That does scare me, just seeing how weak his immune system is already without the immunosuppressant drugs. I always joke that I am going to make him a bubble boy, but sometimes I am serious…it’s just; if it’s out there he will get it. It’s hard because people want to touch him and love him up and I just want to run him in the other direction because his hands always go straight to his mouth (or theirs, future dentist like his auntie Hien)… so many things are spread by simply touching hands. What kind of life would it be without being touched or touching things though? It’s always a constant battle between hyper protective and quality of life.

He recently got diagnosed with the parasite toxocarra, which the doctors said is common, like 1 in 4 kids get it from animals, it apparently runs rampant at parks, but most kids bodies are strong enough to rid it by themselves, but not little Gavs. We meet with infectious disease (another ologist who was wearing a malaria tie, it was actually quite humorous) and this could be the root of his esonophils, so hopefully he will come out all squeaky clean!

Gav is also my newest grocery shopper, I hand him a box and he launches it into the back of the cart, most of the time, sometimes at other shoppers and the floor, but 3/4 of the time right into the cart. He actually likes doing this so much that he tries to grab boxes off the shelf!

Gavs transplant should be near the end of November if he recovers with these antibiotics, so it will be a rough Christmas, but still the best just the same.

As you can see, I have become a germ phobic person now, and I see that I have passed it onto Lauren. The other day she used a public restroom and asked me for a paper towel to open the door handle with. She sings a song to wash her hands and started singing it for me while I was washing as well…she takes such good care of her mama.

We had Fall Fest this weekend and they had horses pulling a carriage so Lauren and I hopped on and I whispered in her ears that she is the best girl in the whole wide world and she whispered back to me, “it’s a secret mom, don’t tell anyone!” I actually scored “you’re the best mom in the whole world,” which has been a battle hard fought, I’m going to tuck that in my pocket for a rainy day!

It always amazes us that we have created these perfect beautiful children. I was reading an article written by a mom with a child with special needs and she said that she had to re-adjust her thought of perfection. I had some qualms with that…my children without re-adjustment, without hesitation are perfect in each and every way, as all children innately are. I think that’s true of children everywhere, they are smiley eyed future perfection…as Dr. Seuss said, “Oh the places you will go!” We’re just lucky to be part of the ride!

I can’t quite say I have recovered yet, I like what Mary said, rubber band moments to see how far you can stretch before you snap. As I look at the blinking cursor on the screen I just have to shake my head because I wonder if I already have snapped. I can’t seem to get myself picked up this time. Gav seems like he is starting to get into another episode of his. He is vomiting up to five times a day now, mostly at night and in the morning. It never gets less scary to hear the low gurgle in the middle of the night, knowing that it’s about to come, that his tube is going to be dangling out his nostril and his throat, and that at the end of watching this horrific vomiting event, you are going to have to shove it right back down again. It just seems so unnecessarily cruel.

During the day he seems to do quite well, still interested and alert and ready for action. We went to the zoo the other day, since it seemed like our walls were closing in at home. He is just in love with the animals, pointing to one and then the other. Absolutely fascinated with the zoo train. He is starting to add some more words, up and duck and is trying hard to make the sound of a cow, although it comes out more as a mmm then a moo. They ended up not casting him, but put a small brace on his wrist for optimally four wks, but the ortho said, in reality it will prob be two that he will tolerate it for. Gav takes a special form of dislike to it and tries his hardest to rip it of, but thankfully is unsuccessful most of the time.

Both kids enjoyed spending time with Princess Julie”anna” (Lauren renamed her) aka cousin Julie who flew all the way up here to be by my side for the non existent transplant(ugh). I think she was sent here for another purpose, and that was to give me strength to keep fighting for Gavin when in reality, I wanted to stay holed up in bed. She pushed me to push for answers and take control of his situation, and I believe that he is better for it! There are no words that I can find that express how grateful we are to you for taking time for us!

Lauren is feeling a good rush. Apparently, she is under the assumption that she is quite wealthy, since she has eight coins now (it’s as if she won the lotto), she would like me to “buy her a farm already”. Thanks to her little neighbor friend (who is almost four) she is now obsessed with the idea of becoming a teenager. She is getting into high school musical and just loves the thought of anything that is considered “big teenager”. She has even gotten a new teenage walk that she likes to do and is sure to point out all the moments when she “looks like a teenager” (and she is sure that everyone thinks that she already is). I told her not to grow up so fast, but it is quite amusing. When you are young, you want to be older and when you are older you want to be younger. She also thinks our seven year old neighbor is an adult because he helps cut the grass, so that gives you some insight.

Thanks for the inspiring words, we find ourselves checking his sight often for inspiration…we are lucky, may we continue to be lucky and may we get a new transplant date ASAP so we can stay sane! As my mom would always quote us, “this too shall pass” and “that which does not kill you will make you stronger!”

Jill