Wednesday, May 29, 2013

The Dentist

Kamryn had her first trip to the dentist. Why would a child with 2 teeth in the head need to go to the dentist?  Well because she is 17 months old and only has two teeth.  You can see them in the above picture.  Her medication slows the progression of her teeth.  Most dentists won't see a child before three years of age.  We had to go to Gig Harbor to find a dentist that would see her. 

To make this visit easier I asked for the paperwork ahead of time. It didn't arrive in the mail.  I was handed five sheets of paper to fill out before the appointment.  Good thing we were early.  My friend Tammi who drove us to the appointment, became Kamryn's nanny as I filled out line after line of questions.  I must say the first question confused me. "Is the child healthy?"  Gone are the days of looking at a health questionnaire and quickly checking off the boxes.  The words, "list your child's medications"  made me laugh.  The place to write them down made me laugh harder.  It was an inch and a half long. The word Cyclosporine is an inch and a half long.   Sometimes being the "what if" kind of person comes in handy.  I whipped out my copy of her medications and had the lady copy it.  The paperwork took about 20 minutes, with questions of medical conditions, hospitalizations, immunizations...  Because of a leaking tricuspid valve, Kamryn had an antibiotic prior to her visit.  We were called back a few minutes late. But when you look at the medical questionnaire of a child with a heart transplant you got to have time to study it. I would much rather be called back late than have someone not know whats going on.

 Kamryn had her teeth brushed, the muffled words no, no, no came out of her little mouth.  She wasn't fond of it.  The Dentist came in a little later, we had a discussion, she looked in Kamryn's mouth and gave her a fluoride treatment.  It was good to hear that she has more teeth than just the two visible. We talked a little more about Kamryn.  The Dentist said she would bring Kamryn up in her clinic group to see if any other dentist has had experience with a young heart transplant patient.  She her self has had experience with an older liver transplanted patient but not a heart transplanted patient.  (No HIPPA laws were broken during this discussion.)  Kamryn is not fond of having her mouth opened and her teeth messed with.  This could be a problem for a child who needs to brush her teeth every time something goes in her mouth. At the end of the visit we left with a sleepy child and a $6.00 tube of non fluoride toothpaste.  I hope target sells it cheaper.

Thank you Tammi for being our chariot driver and nanny.  I couldn't have done this without you.

Wednesday, May 15, 2013

Extraordinary women!

Today I met some extraordinary women.  Each of them dedicated to their beautiful child in the CICU at Children's hospital.  Jennifer, a quiet beautiful woman, sat with me for a few minutes and told me about Kyle's special heart.  He has multiple issues that will require more surgery.  He is currently having difficulty weaning off some medications.  He is also having feeding issues.  The pictures I've seen of this beautiful baby melt my heart.  He is such a precious little angel. I wish I could have spent more time with them. 
I have been in touch with Christi by facebook for a few months now.  She is a vibrant, glowing woman.  We spoke for a little while about Poppy and her listing for transplant.  She is grateful for a clear plan now for Poppy.  Waiting is hard.  The reminder that God is in control helps when the day ends and a new one begins.
I found myself in tears at times while talking to these beautiful ladies.  They're working hard to make sure their babies get the best of care.  My prayer is that God brings them peace and healing for Kyle and Poppy.

Saturday, May 11, 2013

17 months and counting

May 10th Kamryn turned 17 months old.  As I look back on her journey there have been times I didn't think we would make it this far.  While Kamryn was in the hospital,  Mike and I would take breaks to the local Target, I would look at the cute baby clothes and wonder if I was ever going to be able to buy her a new outfit or even diapers.  Much has changed since then, all though I don't have to buy her new clothes. (thank you April)  I can.

Earlier this week, Kamryn, Kjerstin and I went to my eye appointment.  Most of the time people comment on Kamryn's long eyelashes,  her long hair or her cuteness.  The gentleman in the waiting room commented instead on her personality.  She had displayed some stubbornness with as much charm as she could.  My comment to him was, "Yes this one may take some creative parenting." What he didn't know was the journey she has taken to be so charming.

Kjerstin encountered a situation where she was telling someone about Kamryn's heart transplant.  I asked her if it was hard for her to talk  or even tell someone about it. She told me no, and asked me the same question.  I find that it's difficult at times and then not in others.  The goal now is for her to become as regular as possible.  We will never be able to use the word "normal".  And is anyone normal anyway. 

I do believe the terrible twos are upon us.  This sweet little girl is good at temper tantrums.  It may be because for so long she has had someone to cater to her every need.  The word no has become her nemesis. With her increased activity comes boundaries.  The little sit down she had when she wasn't allowed to walk off the sidewalk was cute, but naughty at the same time. I will try to get a video the next time this happens. 

Please continue to pray for us.  Mike is doing his best to keep is afloat financially.  He is a wonderful husband and is doing all he can.
God has provided for us and will continue to do so. 

Luke 12
22 Then Jesus said to his disciples: “Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. 23 For life is more than food, and the body more than clothes. 24 Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! 25 Who of you by worrying can add a single hour to your life[b]? 26 Since you cannot do this very little thing, why do you worry about the rest?

27 “Consider how the wild flowers grow. They do not labor or spin. Yet I tell you, not even Solomon in all his splendor was dressed like one of these. 28 If that is how God clothes the grass of the field, which is here today, and tomorrow is thrown into the fire, how much more will he clothe you—you of little faith! 29 And do not set your heart on what you will eat or drink; do not worry about it. 30 For the pagan world runs after all such things, and your Father knows that you need them. 31 But seek his kingdom, and these things will be given to you as well...

For where your treasure is, there your heart will be also.

Monday, May 6, 2013

Relax, the hard part is over...

You would think, the transplant is over there's nothing more to be concerned about.  On a daily basis you would be right and wrong.  Kamryn is thriving.  She has reached milestones that were so far away and surpassed others.  Today she is sick.  I made an appointment for her this morning and one for Mark for Wednesday.  They probably have the same thing.  And it's probably a cold , but he has to wait in line behind his little sister.  I wish I could say that never happens for anything, but that's not our reality. He's staying home from school today and will be with Grammy during Kamryn's appointment.

Last night Kamryn and I slept down stairs. After a sinus rinse, and Vicks rubbed on her feet she was asleep.  Don't move a sleeping baby is my motto.  If they're asleep let them be. Sleeping in my own bed seems like a distance dream.  Just as I think I might be able to go there, Kamryn gets another cold or is not eating well or is vomiting,  All of which in one of my other children I would monitor, diagnose myself and wait. They would get better and all would be great.

The possibility of rejection, the immune suppression and the unknown, drive me to seek early intervention for Kamryn.  Our Dr is so good about not making me feel like a crazy over reactive parent.  As the mother of 5 kids you would think I won't have a better handle on all of this.  Reality is I don't, I may never, and I can live with that. Parenting is hard, not necessarily fun, sometime down right boring or way to exciting. The rewards are infinite, aways special or sometimes nothing at all. (those of you who do laundry understand the nothing at all)

To realise where we've been and where we are now, brings tears to my eyes.  I'm going to work on relaxing a little about the little things.  I did get a shower, my hair done and snot on my shoulder before 9am.  Kamryn is now emptying a basket full of laundry that needs to be folded. I guess it's time to relax and reap the rewards, she's good at matching socks!