Another Trip to the ER for Gavy

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

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Oh The Places You Will Go… Lucky To Be Part Of The Ride!

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!