Tuesday, January 29, 2013

January Fun

January has be full of birthday parties, sledding, sleigh rides, fun with friends, the birth of a new cousin, hospital check-ups, visits with friends from the hospital, and mostly enjoying time out in the snow! Thankfully we are all well. Joel's busy working and the girls & I are actually keeping up around the house! Getting back into a routine, finally!


January has also has brought sorrow for many who knew Margaret Bayne, of Camp Homewood on Quadra Island, BC. Marg was 96 and still on fire for Jesus. She was such an inspiration to anyone who had the priveledge of meeting her. Her determination to share the gospel of Jesus and the power of God's word was incredible! We loved her, and pray for her husband Alf and all of Homewood's staff. It won't be long until we meet again, thank you for the blessing you've been to us Marg!

Here is a picture of some of Camp Homewood's horses, a reminder of God's beauty. It was a joy be in such a beautiful place with such beautiful people. To see more of what Homewood's all about, check out their website: Camp Homewood! or read the post from: 10 o'clock coffee - Remembering Margaret

Friday, January 25, 2013

"She Had a transplant, She's fixed right?" by Linsey

My thoughts exactly! Here's a heart transplant Mom sharing details that I have yet to explain:

Thank you Linsey from crazybeautifulrippys.blogspot.ca

"She had a transplant, she's fixed, right?"

It's a common misconception that when someone gets a heart transplant they are "fixed."  I can definitely see how people would think that, but it's simply not true.  Yes, a heart transplant can allow a person to have a much better life.  It can make it so that they finally feel better, can climb stairs, run & play, or just live.  Heart transplants save lives.  But it's not an easy road, that's for sure.  Here, I'd like to shed some light on what it's like to live in the transplant world.  It's my hope that I can help others understand why there are some areas in my girls' lives that are very very different than their childrens' lives.  And also why it's so important to really adhere to what some may call my "paranoia" about the things we can and cannot do.

First things first: a heart transplant (or any other organ transplant) is trading one disease state for another.  Any organ transplanted into a body is perceived as a foreign object by the recipient's immune system.  In order to (hopefully) prevent rejection, there must be immuno-suppressive medications on board at all times.  These drugs, while they help so that the organ doesn't reject, do a lot of damage to the body's other organ systems, and also set the recipient up for any type of infection that is around them.  They become very susceptible to germs, cannot have live vaccinations, and are at an extremely high risk for developing cancer.  In the case of my children, these medications also cause their white blood cell counts to be off, blood pressure to be high, kidney function to be diminished (most heart transplant patients will end up needing a kidney someday), appetite suppressed, and hemoglobin to be low.  They cause excessive hair growth, skin issues, gum overgrowth, and a myriad of other scary side effects that I won't even go into right now.  So there are other medications added to their drug regimen to combat all the issues that the immuno-suppressant drugs cause.  Being on these meds is just another situation of "the lesser of two evils".. the alternative, of course, being that the person is no longer alive.

Another common myth: once you are transplanted, that organ will last forever.  False.  Most heart transplants last around 10-ish years.  Now this is just an average.  Plenty of people live 20 years without needing a new heart, and others will need another one two years out.  For some reason, transplanted hearts very easily succumb to Coronary Artery Disease, and must then be re-transplanted.  Of course, they are working on getting to the bottom of this mystery, and I so hope that my children won't face a re-transplant, but chances are they will.  And I don't even want to think about the possibility of having to do a kidney transplant, too, like I mentioned above.  So I don't.

Germs, germs everywhere.  Did you know that there are fungi that live on rosebushes (and other plants) that could kill someone with a weakened immune system? Yeah, neither did I till I had two kid with transplants.   Or how about birds and reptiles-full of salmonella and other unmentionable creepy-crawlies.  Public pools?  *Shudder* Not for my kids-I'd be better off letting them swim in the toilet.  School, of course, is a necessary evil.  But the thought of all those un-vaccinated kids with runny noses, chicken pox, whooping cough, etc. is enough to make me want to run for the hills and home-school my kids, Duggar style.  But being as I have zero patience to teach a special-needs kindergartener, and I want my kids to have a meaningful education, I suck it up and send them to school.  With hand sanitizer.  And a bubble wrap suit.  Just kidding.  (Wouldn't that be cool, though?!?!  Ha ha.)

Constant monitoring and doctor's visits.  When was the last time you had to bring your 6-year-old to have a bone scan?  What's your three-year-old's resting blood pressure?  How's your daughter's fluid status today?  Don't know?  To all of the above, I say: been there, done that.  Every single organ system is monitored in a transplant patient.  Most heart transplant patients even have to have heart catheters done frequently, where they are put under anesthesia and a catheter is threaded through the groin up into the heart to study heart pressures, the state of the coronary arteries, heart function and the like.  Sometimes they take biopsies.  Many, many children who have heart problems and/or transplants are developmentally delayed or disabled, which brings speech clinicians, special education teachers, occupational and physical therapists to the table.  My 6-year-old could direct you around the Mayo Clinic.  It's just a fact of life for us.

Still think transplant's a permanent fix?

In no way do I mean to gripe and groan about transplantation.  If not for transplants, and organ donors, neither of my children would be alive today.  I am a tireless advocate for organ donation.  I will never rest.  We are absolutely and totally blessed with our two beautiful girls.  They are miracles, and testaments to why organ donation is a wonderful, fantastic and magical thing.  It's just that it's not an easy road to travel.  Is it worth it?  You bet.  I'd choose the same road again and again if it meant that I can have my kids here to drive me crazy till I am an old, senile woman.  They are both doing extraordinarily well.  They live their lives as normally as possible, and that's what matters.  They'll never be the same as their peers.  We have basically fought for every single aspect of everyday living that most take for granted.  That's ok, though, because it has made us open our eyes to the blessings that surround us.  We really have stopped to smell the roses.  We just don't touch them.  Fungus on the rosebushes, ya know.

Thursday, January 17, 2013

a touch of the flu.

Sara's been sick all day, thankfully she's able to hold liquids down now. Please pray that she'll be over this soon, she needs to get better and hold down her fluids & meds, or it will be in to emerge for an IV.

Keep washing your hands! Hand Sanitizer works for bacterial infections, but does not stop viruses. Simply using soap will get rid of both! Also, if you have been sick, you're usually contagious for a week to 10 days after you feel well. This is one of the worst years for the flu, so help stop the spread! With so many flus & colds going around it's hard to keep clear!

Please continue to pray for our friends - Hope, Caleb, Joel, Harrison, Morgan, Marwa, Safa, Makenna, Sheldon, Alexis, Precious, Muskaan, Lukas, Isabelle, Grayson, Austin, Melissa, Hilda, Isabel F, Kaiya and Cohen. Also pray for the families of Drayton, Addison & Jack, three precious lives that have left us and will be forever cherished. God Bless you.

Wednesday, January 16, 2013

Happy 4th Birthday Sara!

Sara is so full of joy, it over flows! It's hard to believe what she's gone though in her life, starting out at 5lbs. 3oz! We're so happy to have her running around again! There's no stopping her now! 

Your prayers have got us through the last 4 years, we are so grateful for what God has done in her life and in ours. Our hearts rejoice!

James 1:17a " Every good and perfect gift is from above, and comes down from the father of lights..."

Saturday, January 12, 2013

Friday, January 4, 2013


Now that we're home we get to play Lego, play in the snow, and just enjoy time together! Sara's appointments have been twice a week or once a week, and after her next Transplant Clinic appointment that should change to once every two weeks! There has been no sign of rejection in all her tests, and she's doing so well with getting poked for blood work each week. She's off & being weaned off a couple meds, as her heart continues to improve. In 6 months Sara will have another cardiac catherization & biopsy to check for rejection again. We have meds that are on a schedule, but other then that it's pretty normal around here! She's managed to stay healthy with everyone around her getting sick! We're praising God for his protection! We were so blessed by friends & family cleaning our place & preparing it for our arrival! It's wonderful to be home even if I have to face the mountains of laundry, dishes, and Joel going away for work! Hopefully his job mulching will go well, and the time will pass by quickly so he's home again soon! 

We're so happy to share that our friend Austin got a heart transplant in December! We're praying that he will recover quickly and be home soon! Please keep praying for our friends - Joel, Hope, Muskaan, Harrison, Caleb, Isabelle, Isabel F, Lukas, Grayson, Jace, Sheldon, Alexis, Hilda, Melissa, Morgan, Marwa, Safa, Makenna, Kaiya, Cohen and Precious. Most of these friends have been through incredibly tough times- it's a roller-coaster ride of ups and downs and what seems to be endless waiting. Pray for clear answers, and comforted hearts. Jesus cares for you. "Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him and He will direct your path." Proverbs 3:5-6