Wednesday, August 28, 2013

Easily forgotten

Two plus years ago I discovered I was pregnant with our 5 child.  I went from not being pregnant to 4 months pregnant in one day.  That beautiful baby was born without a hitch and we continued with our much fuller lives. And then.... you know the story.... you prayed and you know the outcome.

It's days like yesterday that bring me back to that night in the hospital.  The fear, anxiety and waiting can make a person nuts.  Everything has been going so well.  Kamryn is not a child you look at and say she's sick.  She's a happy, healthy 20 month old with an enormous vocabulary and a duck walk. Her past is easily forgotten and yet.

Yesterday we spent 4 plus hours in the Doctors office here in Port Orchard.  She has had some diarrhea and one episode of vomiting. Dehydration is an issue with Kamryn on a normal basis.  When she gets sick it can be worse.  For an already dry child to get more dry is not a good thing.  The medication takes an extreme toll on her kidneys on a good day.  Dehydration causes medication level to be over the top and possible kidney failure. They measure dehydration by weight loss in small children.  Kamryn had lost a 1lb, 5% of her body weight. This is significant for a little peewee.  The second visit to the Dr showed she'd lost a little more weight.  Before seeing her he was ready to send her for IV fluids at Mary Bridge.  Thanks to that big Aubrey personality the Dr was satisfied that she would not need IV fluids.  She was no longer sunken, and anemic looking. We will visit the Dr again today.  While her symptoms are still the same she is doing better.  The 6:30am wake up call of mommy, mommy was music to my ears.  While I didn't want to get up, we spent some quality time together in the am. 

Her follow up visit was reassuring.  The Dr is pleased at her progress with fluid intake. We will see the Dr again next week.  I think now mom and baby need a nap.   

Wednesday, August 14, 2013


Yesterday, I watched a news blurb about a young man back east that wouldn't be getting a transplant because of "non compliance".  The news media spun a story of a teen boy with issues of unlawful behavior.  They spoke with the hospital whose board had denied transplant list placement.  The hospital is of course not able to release information on this particular case.  But the media didn't ask about the painstaking process the board must go through to be put on a transplant list. The rules are not only set down by the hospital but by the UNOS (United Network for Organ Sharing) board. A patient must be able to follow a strict  medication regiment, eat right, make and keep follow up appointments and lab work. They must also meet certain criteria related to quality of life, and ones psychosocial network.

The weight of how very important a decision this is, falls heavy on my heart. If this child was not ready for the difficulties surrounding a transplant, then it would be prudent to deny a placement on the list.  Most teenagers that I know have an invincible attitude.  They are unaware of their own mortality.  It would be difficult to get most teenagers to stop and take medication.  A young man who might have an issue with authority may not have the discipline to follow such a regimented life style.

As we prepared for Kamryn's  transplant, we were asked about our level of commitment to this new life style.  They ask these question not only to find out your level of commitment, but because the donated organ is so precious. If one can't commit to following the program, then the organ has gone to someone who may not consider it or its donor valuable. Thus deny someone else who needs the organ a chance at life. 

I'm pleased to say that this young man has  been put on the transplant list as of today.  While I'm disappointed in the media and their poor coverage of this issue, I'm happy for the family.  I pray that they will understand the gravity of what they will receive and its cost. 

Thursday, August 8, 2013

Update on the walking

A week ago we saw PT about Kamryn's walking.  She was prescribed orthotics, which I ordered on Thursday.  They were shipped on Friday and arrived on Saturday.  I put them in her cute little handmedown Nikes from Kjerstin.  With her first step she started walking different.  Actually moving her ankles, it was amazing.  So this week she has been working up to wearing them about 4 to 5 hours a day.  The orthotics help her muscles start from a neutral place, (instead of a negative place) in order to help her move to a positive place in her walking.  Kamryn would get tired from walking  before, it was a lot of work for her to do. Now she is climbing and starting to run.  While she does get tired it's not as frequent. I find myself chasing her more, which might explain why my hip and my knee hurt today.

Thursday, August 1, 2013


Kamryn went to Holly Ridge today for an evaluation on her walking.  In Uncle Charlie Combs' words, "She walks like a duck."  She doesn't move her ankles, and mostly moves at her hips and knees.  Most babies are flat footed, as they learn to balance and walk that changes and they develop arches.  Not only does Kamryn still have flat feet she also has low muscle tone.  She doesn't know how to stretch her muscles and bend her knee to step down off the stairs or stand on her tip toes. So her ankles don't rotate.  Most recently, like in the last 2 days, she has begun to walk backwards.  This is a skill she should have developed months ago.

At Holly Ridge Kamryn was given exercises and games to play to increase the muscle tone in her legs.  She will be getting some orthotics to help rotate her feet outward and start the rehabilitation process.  We will have an appointment in a couple weeks to see how she's doing.  It was nice to know I wasn't crazy and projecting issues onto Kamryn.  The PT was able to explain why Kamryn has the issues with her legs and feet, which are in line with not moving and not learning balance at an early age.  Just wait she'll be playing soccer at age 5, and running with the best of them.  Well okay maybe soccer, there is that crazy mom who will need to be convinced.