Kintropy In Action

Today we went to a birthday party at a neighbor park in a Hillsdale community. It is a really cool park. It has a huge hill ridge going through its center. On the top plateau, there is an older play area with some new features. Its play structure is pretty new, but it also has a merry go round and teeter totters. I rarely find these two items in parks in our area.

The reason the family chose this place is that, on certain days of the week, the park service sets up a giant slip and slide on the side of the hill. It is extremely fun. I came prepared wearing a swimsuit for me and the kids' grandfather. Last year, I got Hannah down the slip in slide, but had no way to document it. Zadie was the camera man and helped schlep Hannah back up the hill

Gabriel giggled at me, “Did you see me I went down on my stomach?”

I smiled “It looked like fun.”

When I got to the top, I sat Hannah on my lap and started to push off. The mom of the birthday boy dosed me with dish soap. At first it was slow going; then midway down, inertia hit and we flew into an uncontrollable spin with a splashing finish. Hannah laughed.

Gabriel loved it, and by the third time down, Hannah was giggling at the top in anticipation.

--Mom

Posted by parents at 08:03 PM | Permalink | Comments (1) | TrackBacks (0)

I was concerned it was a cyst in her ovary. I know she is young, but two years ago she had a mucinous cystadenoma in her left ovary. It was growing abscesses, affecting her bowels, and giving her pain. That ovary has been removed, but we have been having a yearly ultrasound to check on the progress of the other ovary.

Since she was going under for the tonsils, I went ahead and had the ultrasound done again. The doctors didn't see anything that they thought would be causing pain. I talked it over with her physical therapist who took Hannah through some muscular work out and determined it wasn't sore muscles. I took her to her General Practitioner with a tub of Hannah's pee. There were no pathogens and no blood in her urine, so there was no infection and no stones. So finally I went to the GI doctor.

She hasn't been stooling everyday for most of her life. She is more of once every three day type of girl. I have been supplementing her food with prune juice and acidophilus to help keep things moving. Still it has been an every three day occurrence, plus she usually started the stomach grabbing after the second day of not stooling. So the GI doctor suspects it's constipation and low muscle tone internally. He has changed her antacid to a laxative.

Unfortunately, the dose is not right, and Hannah has the runs.

Today, when Hannah was on the potty I heard her call “All done!”

I walked in the find her hand, cheeks and legs covered in brown, smelly slime.

“YUCK!”

Obviously the dose is too much and needs to be adjusted.

I wiped her down with a washcloth as I lectured her that her body is trying to get rid of this substance. It's not to play with and, wince, not to eat. I told her she can get real sick doing this as I turned on the water in the tub for her second bath of the day. I soaped her up and rinsed her completely down with the shower head. Then filled the tub with water for another bath.

Before I had kids I was terrified of poop.

--Mom

Posted by parents at 08:49 PM | Permalink | Comments (1) | TrackBacks (0)

We went to PGE Park the day before Hannahs surgery.  We got the tour the stadium and go down on the field. 

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I tried to put Michael Jackson's death into perspective for Gabriel and Hannah.  "He was a huge star.  Oh, and he did a video with dancing zombies."

This got Gabriel's attention.  He has been trying to impress me with his love of all things scary lately, so Hannah, Gabriel, and I sat and watched VH1 replay the short version of Thriller. Hannah looked up from her toys in a few parts, but seemed mostly unimpressed.  Gabriel watched transfixed by the dancing zombies.

And Gabriel had questions.  "What made him into a zombie?"

"I think dancing with zombies."

"I think it was the water," Gabriel countered.  "It turned him into a zombie, then back, then a zombie again."

The kids and I were headed out to a muffin shop we have nearby, meeting up with family and looking at a classic car show in the parking lot.  I loaded my mp3 player with Michael Jackson songs for the ride, and we headed out.

Hannah gave several clap approvals to "Man in the Mirror" and "Gotta Be Starting Something."  Gabriel perked up when Thriller came on, and I explained how big a horror movie actor Vincent Price had been.  At the end of Thriller, when Vincent Price cackles, Hannah burst out laughing.

Somehow, somewhere, Gabriel must have made a connection.  For most of the day, he has been saying things like "The kids at the park were talking about Mike, too." and "I like Mike and zombies."

I'm not sure why Gabriel and Michael Jackson are on such friendly terms, but I think it's cool that he and Hannah had a chance, albiet belatedly, to hear, clap to, and watch his music today.  A little piece of my childhood celebrated with the kids.

-- Dad 

Posted by Dad at 07:28 PM | Permalink | Comments (0) | TrackBacks (0)

About a month ago we took the kids to the OMSI, Oregon's Museum of Science and Industry.

Gabriel wanted to go in the planetarium. So did I.

Robert and I looked at each other. Whenever we have taken Hannah to a movie theater, she sits through the previews ,then has not been ready to sit through the movie. So we looked at the schedule and a particular show caught our eye. It was a U2 laser show. We bought tickets and decided who would take Hannah out when the fussing started.

We were lucky. It was earlier in the day, and there were only 5 other people waiting, one of which was a little girl about 2.

When the doors opened, we found seats next to wheelchair access. Gabriel kept telling Hannah, “We are going to outer-space!” based on his first planetarium show years ago.

The lights went out. I took Hannah's hand and tapped to the beat. She squeezed my hand tight. Then she took her other hand and tapped along to the beat.

Some of the images were alarming like robotic warriors and ruined cities. But the streaming light in a rhythmic flow captivated her. When the lights went out between songs, Hannah's giggle lit up the space.

We all got to see the whole show. Now I want to petition Laurie Berkner and other children's artist to do laser light shows.

Daddy of course made sure she got some U2 on her MP3 player.

--Mom

Posted by parents at 10:23 PM | Permalink | Comments (1) | TrackBacks (0)

This weekend Hannah's recovery took an ugly turn. On the morning of Saturday she was doing OK. By that afternoon she was retching. Since, Hannah has had a surgery to prevent vomiting it is terribly uncomfortable for her. To relieve the pain and pressure I do a procedure with her g-tube that involves me putting an open syringe at the end of the tube so air and liquid can move out freely. It is how we normally burp her. When she is ill it will include bile instead of just digesting formula.

We were lucky in that she had no blood leaking anywhere and no fever. When I got noxious too, I was pretty confident it was a viral stomach bug. My active little girl wanted to just lay and snuggle. In between the gagging. It limited what we did. Robert's father's day was not that fun for him.

By Monday, she was feeling better. Yesterday, we all got of the house. Today, we even had an adventure in a park.

Posted by parents at 09:55 PM | Permalink | Comments (1) | TrackBacks (0)

I pitched the idea today that it was "Father's Day Weekend" rather than a single day event, Father's Day, tomorrow.  Gabriel latched on to the idea.  Hannah was ready to cling to me no matter my position.  Mom was a bit more skeptical.

"Hey!" she protested, indignant.

I even found a football game, in the middle of summer (local high schools) that we could attend tonight.  Still no dice.  I did get a long, uninterrupted nap this afternoon, though, which probably qualifies as an extension of Father's Day by at least half-a-day. And then I had to go into work to troubleshoot an issue (now fixed).   Argh.

We're spending tomorrow with family, so hoping that goes off without a hitch.  To all the fathers out there, I hope you enjoy your day with your family!

-- Dad

Posted by Dad at 10:17 PM | Permalink | Comments (0) | TrackBacks (0)

When I took moments to give Gabriel attention,Hannah flared out in a painful coughing fit that usually needed some g-tube venting, saline nebulize treatments, orajel and cuddling. Gabriel tried to stay upbeat and be more independent. I felt proud and tried to stifle my frustration when he pulled the DVD Movie case from a high shelf and spilled its contents all over the floor. I had to run and intercept him when he tried to pull his own toast out of the toaster oven. I got him an oven mit. In the end, of course, he did a great job.

He really is a great big brother and son.

Mom

Posted by parents at 09:56 PM | Permalink | Comments (0) | TrackBacks (0)

Up on night watch, waiting to add food to Hannah's Kangaroo pump.  I think the 2nd or 3rd day post-surgery is the most painful & irritating, and Hannah would probably agree.  She's having a hard time getting & staying comfortable. 

We've been through the Tylenol, saline mist (keep her throat and mouth from getting too dry & uncomfortable), the diaper change, the singing, and a quick new blanket to keep the bed fresh.  I noticed a little color in the bed around her mouth, probably from loosening stitches and/or reduction in swelling allowing things to flow a bit.

Overall, I think she is doing okay.  During the evenings before bed, she's playing, giggling, and staying active.  We're hoping that, post healing, the nights and sleep also improve.  For everyone.  Parents included!

Gabriel is being a champ, helping entertain Hannah when the surgery & recovery turn the cranky up to 11.  His last day at school as a 1st grader was yesterday, so he is, I'm sure, celebrating the start of summer vacation.

Will write more soon & flow back into story mode.  Lots to share from the last few months, and I'm sure we'll be out adventuring this weekend for Father's Day.

-- Dad

Posted by Dad at 10:23 PM | Permalink | Comments (2) | TrackBacks (0)

Four hours after surgery on Monday, Hannah was up on her knees chattering at her ENT “All Done!”

He smiled at her graciously. “Yes, I know Hannah, but you need to stay over night. Keep doing well and you will get to go home tomorrow.”

Hannah frowned “ALL Done!”

He chuckled “I'll see you tomorrow, Hannah” he gave me a nod and walked out the door.

Hannah sat back on the bed and glared at me.

“Do you want me to hold you?”

She raised her hands.

I stood and started maneuvering the recliner the bedside table. I pulled the TV slash nurse call button control box over by where my head would be.

She became insistent “Uuuuuuuu Up!”

“Just a minute Hannah I need to arrange things.”

She fussed and fumed as I got everything in place. Then I pulled down the bed rail while I checked where her IV line was and her Pulse Oximeter cord was. Internally I mused how much easier this was without a ventilator, heart monitor, and a pic line.

I pulled her into a hug and was rewarded with a swift tug on my hair.

I sat her back on my lap with a blanket beneath her and a pillow under my arm. She snuggled in and watched her DVD player.

Twenty minutes later she was complaining. So we called in the nurse. She suggested a Popsicle stick. I moved Hannah back to the bed because she squirming too much to hold onto.

Hannah doesn't eat by mouth yet so this was bound to be interesting.

Mom

Posted by parents at 05:26 PM | Permalink | Comments (1) | TrackBacks (0)