Sunday, May 22, 2011

Journey to Holland


Oh, it has been way too long since I last posted! I don't think I've ever gone this long without an update about Mason or our family. I think I'll blame it on lots of baseball games (Preston and Braiden are each on 2 different teams, yikes) and lots of end of the school year projects mixed in with all our doctors appointments.


I've read the follow story several times and love it! It describes so well the emotions of being on this journey we embarked upon when Mason was born into our family (and Ammon as well who came with his own set of special needs). I'm not sure why I've never quoted it on Mason's blog before, but here it is:


WELCOME TO HOLLAND
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this… When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely hings …about Holland."



EVERY time I read this I cry! When most of as young women dreamed of having children someday we saw healthy happy children playing sports, meeting normal milestones, and fitting in well with all the other children in the neighborhood. But, I guess for some of us that would be 'Italy' and we didn't land there!!! We landed in 'Holland' where it is full of lovely blessings. but many tough trials as well. Seeing my Mason miserable in the hospital so many times and go through so much physically, or my Ammon not fit in well with the other kids his age in the neighborhood or school because of his intellectual delays........ wasn't anything I ever read about in my 'guide book'. It's much different than I ever imagined motherhood to be, not bad......just different. And it's true, I have met many wonderful people and learned a whole new language that other wise I wouldn't have if I'd landed in 'Italy'. I do love my unplanned journey even though it's not always easy. I pray each day for strength to endure it, and do all I need to along the way to be the best mother I can to our five children. I am grateful to know without a doubt that on days when I fall down, my Father Above helps pick me back up to continue forward on our journey through Holland.



What is Mason's latest journey?

For the most part he is doing well. We've had a few false alarms in the last month where Mason had several symptoms of rejections, but fortunately it turned out to be just that...false alarms. Some of his symptoms were very low blood pressure (60/30!!!), lethargic, vomiting, high heart rate, and just not acting like himself. What it turns out to be is he's not needing as many blood pressure meds anymore.


Mason's blood pressure is extremely sensitive to steroids. He has been on 3 different BP medssince his transplant. In January when he was admitted to the ICU and received super high doses of IV steroids because of lower heart function (which the docs had thought at the time was rejection, but ended up not to be) Mason had to go up on the doses of his BP meds. It takes about 3 months for the side effects of steroids to diminish from the body. So that being said, along with Mason's normal daily dose of steroids being slightly lowered at the end of March when we went to Stanford........ One night a few weeks ago Mason's body decided it didn't need to be on so many blood pressure meds and it was very scary.


He got really pale and clammy. I checked his blood pressure and it was 60/ 30 , and his normal is 100/60. He began vomiting and turned very lethargic, but had a very high heart rate (130). Luckily I have a fabulous pediatrician right up the street and wonderful transplant team atPrimary's with someone on call 24/7. They had me back off on his BP meds and watch him closely through the night, checking his O2 sats. As long as he tolerated the low BP (keeping his O2 sats in the 90's) I was to bring him into Cardiology clinic in the morning for blood tests and an ECHO, and if not....... a night in the ER it would be! Thank goodness he behaved and we didn't have to go into the ER. We have had plenty of those ER trips already!!!


It turned out that his ECHO was totally normal and showed no signs of rejection. A biopsy is the only sure way to check for rejection but too many biopsies can cause damage to thetricuspid valve. The docs held off on a biopsy believing that all of the symptoms Mason had were because of the blood pressure meds. What a relief!!! They decided Mason does need to be on lower doses of his BP meds from now on and hopefully will be able wean off of them once he's off all his steroids.


Although, since Mason has been on less BP meds we've had trouble finding the right balance.Some days his BP has gone too high causing him too feel absolutely miserable. And, too high off Blood pressure can cause awful things like seizures. Thus, we were up at Primary's again this last Thursday(May 19) to have another ECHO and discuss a plan to fix this BP issue. Thankfully again his echo looked normal, meaning that hopefully his feeling miserable is still just BP related and not rejection. We came up with a plan to wean him completely off of one of his 3 BP meds, ( the clonidine patch- because it seems that this one may be causing the imbalance of pressures) and then just go up slightly up on another one of them. I'm crossing my fingers and praying this works......... and so far so good since Thursday.








At age 3 1/2, Mason's top 10-.......

*sleeps with his baseball mitt

*loves to play to play catch with his ball and mitt

*talking more and more each day

*starting to eat better again (but still not enough to survive on solely) He ate well in January while on the large steroid doses... but back on his normal dose his eating tapered back down to almost nothing.....until just recently.

*loves riding his bike (not really pedaling though)in the house and outside

*will walk with help, holding on to our hands ( but still not by himself yet)

*made it through an ECHO without crying for the FIRST time ever

*interacting more with family and friends (He was so very shy when we returned from his transplant last July.)

*smiling and talking a little to the nurses and docs in the cardiology clinic finally

*favorite food is still BBQ potato chips



Mason has his next biopsy and a coronary artery MRI on June 16. Until then, hopefully no visits up to Primary's will be needed! Thank you for your conitued prayers and support for our Miracle Mason. We also have 3 special heart friends who have had recent surgeries and are in the hospital who are in need of some extra prayers at this time. If you have time visit these blogs: Carter, Grant, Hatcher. ( There may be more of our heart friends also out there in the hospital at this time that I haven't been a been able to check up on lately, but as a family we pray for "all of Mason's heart buddies" each and every night.)




"Life is a journey and there is no predicting what the out come may be. The only thing you can control are your choices.......... and they'll define who you are." ~Richard Castle~

4 comments:

travis and shalee said...

so happy to hear good news! it was so fun to play last week! we need to get together more often!

Keri said...

OH Sum...hang in there. Mason is getting so big and so dang cute.
I love the Italy and Holland story. You are the kind of person that is meant to lead others thru their own journey to Holland. YOu rock, Sum.
Praying for the sweet boys in your life, and your strength.
I LOVE YOU ALWAYS SUMMER GIRL!!

The Zenn family said...
This comment has been removed by the author.
Kimmie said...

i've had the privledge of meeting emily kingsley years ago (her stepson Todd is a close family friend). she not only greatly influenced the down syndrome community, but pretty much everyone she came in contact with. what a gracious mother and example for all of us!

hope mason can get back to some baseball games soon!