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Location: Vancouver, Canada
Some of you know me and my lads from the past. I do not have much time to post any more because of the busy household. My sons are 10, 6 and 2 years old. Here are their updates.
Malcolm: at age 10, Malcolm is roughly half the size of his peers at school, in grade five. He is about 45 pounds now. He tested suspiciously for gluten sensitivity (high antibody titres), and his Dad has Celiac disease, so I took everyone off gluten in case THAT was a factor in their sizes. Anyway, Malcolm is doing pretty well, averaging about 3 surgeries a year for expansions only . Malcolm plays violin, likes Greek Mythology, and is taking a Taekwondo program with modifications.
William: my stoic middle child has recently had a run of bad luck, with a post-surgical infection discovered late, post operative clean-outs, sponges, drains, 2 weeks in hospital, more clean outs, drains, i.v. antibiotics (it's staph), home i.v. antibiotics, rod showing through gaping suture, back to hospital, fifth surgery in three week period, more bandages, home i.v. antibiotics now extended to an additional 6 weeks, and further anesthetic procedure planned for stitch removal and check up on the infection.
For those of you who have had a child on home i.v., you know of the weekly dressing change (worse than an operation, because you're awake," says William), daily bag change, tube and bag change every three days, and constant worry about life at school with an iv pump that weighs a quarter of your child's frail weight (30 lbs) in a backpack all day. I'm really GLAD it's spring break, because we're all exhausted.
James, a sweet little 20 lb bundle of arms and legs, had an expansion a month ago, and then suddenly got a lot shorter and acted like a boy in pain. In to the OR for revision, resetting of the upper claws. That was two and a half weeks ago and James still isn't back to normal, still tired and clingy.
With my three dears running in parallel, I get to see three times the problems! This spring has been particularly bad. Fortunately Dan has been off and able to handle all the appointments and surgeries, as I have a business to run.
There are many joys, such as seeing young Malcolm mature, and William learn to read, and James talking and being able to express his sense of humour (Malcolm has taught him to say "crap", a word which James uses with inappropriate skill). There are also may fears and periodic despair, particularly this winter. I am grateful for the devices which give our children survival, and the Doctors who can wield them with such skill. I pray for endurance and hope, and strength of spirit for my children and husband.
Thank you for reading.
So great to read about your family. I think of you often and wonder how life with three very active, and challenging boys, is for you. I'm sorry to hear about William's infection issues. Sounds like his little body is run down. Braydon had a pseudonoma's bacteria after a leg surgery. We only did two clean out surgeries (3 days hospital stay with each surgery) and 6 weeks at home with two IV antibiotics (gotta love the invention of a PICC line). I can honestly tell you that it took Braydon a full year to recover. The infection, and antibiotic treatment, took a toll on his body. It takes time and patience for their little body's to heal. Sending our best healing vibes to William.
The boys all sound like they have very different personalities. They also sound very intelligent and creative. I'm always amazed at how blessed our children are in other areas besides the medical field. Take care and we'll be sending our best your way!
Location: Plymouth, Pennsylvania
|DEAR SUSAN, |
THANKS SO MUCH FOR UPDATING US ON THE BOYS...
YOUR LIFE FULL OF TRAILS, AND WELL AND JUBILENCE I SEE...
AS HARD AS IT ALL CAN BE, WE, LIKE YOU, THANK GOD FOR THE PIONEERS OF THE
'VEPTR' THE MEN AND WOMEN, WHO STEPPED OUT IN FAITH, TO GIVE THESE 'KIDDO'S'
HOPE...AND MAKE LIFE POSSIBLE...YOU HAVE MY PRAYERS SUSAN...TIMES X-3...GOD BLESS...
Location: Southern California
I just want to reach through the computer and give you a hug... I admire you. And, while I know how challenging things are, I am glad to see you are carrying-on, living life and enjoying your boys! It's all we know, right?! I hope you remember to take time for yourself, too... Thank you for the update. I will keep your precious boys in my thoughts and prayers.
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