Last Dose of CSA today
Last Dose of CSA
Take .1ml and flush it down
Time to throw the CSA bottle away!
Major Milestone Accomplished. Today was his last day of steroids and CSA, both immunospressive drugs. Hope that most of the others will follow suit on Monday at our clinic visit.
Thursday, March 13, 2014
One Year ago, I sat in a Geneticist's office answering medical questions about my son and Paul's and my family history
One Year ago, I held Coleson as she evaluated his head, hair, fingers, spleen, liver and toes
One Year ago, I heard, "MPS, that's what I think this is" as she handed me a kleenex box
One Year ago, I heard that my son's life expectancy could be 6, 8 or maybe 10 yrs.
One Year ago, I held Coleson in my lap as a lab tech searched for a vein to draw blood to no avail
One Year ago, I stuck a urine collection bag on Coleson to confirm the diagnosis and typing
One Year ago, I cried for the rest of the day, asking "why him, why me?"\
One Year ago, I stopped looking at my son as a normal 18 month old, and instead evaluated his every move, his every feature, his every word, comparing him to other kids and looking for signs that he did not have MPS
One Year ago, our journey began...
It really began at birth (actually at conception), though I wasn't informed of such. Yes, there had been several signs something wasn't quite right, his bi-lateral inguinal hernias, his Pectis (sunken chest), his failed hearing screen, his Dyastasis recti (abdominal muscles not fused)....all things know within the first few weeks of life but did not seem to cause concern to his pediatrician, nor his surgeon. There were several more subtle signs during that first year; he didn't crawl, couldn't point, didn't kick his legs during diaper changes, and more obvious signs; his head kept growing bigger and his body at a slower pace. Though I kept questioning these differences, it wasn't until his 15 month well visit that his pediatrician showed the first signs of concern...
One Year later, I wake up with my son in my bed, hooked up to an IV overnight
One Year later, I give him multiple medications morning, day and night
One Year later, we go to the hospital every Monday for blood draws and weekly evals
One Year later, we have therapists and nurses come to the house
One Year later he has hearing aids and glasses (though I haven't gotten the glasses yet)
One Year later, he has dark curly hair instead of straight drk blond hair
One Year later, I occasionally cry and say, "Why him and why me?"
One Year later, I still evaluate his every move, his every feature, his every word, not compared to other kids his age but compared to his "yesterday self".
One Year later, I run after him as he runs down the street excited to get beyond the gate to the main street with lots of vehicles; yellow school buses, red fire trucks, mommy's car (any silver SUV), big trucks
And One Year later, he is still alive and his life expectancy can be into his 20s and possibly longer.
|Playing the drums with silverware|
The journey is still just beginning and it will be a bumpy road but at least there is a road.
Below is a prior post that I wrote earlier this week but did not Publish yet.
In talking with one of my girlfriend's yesterday she said I woke up this morning and thought, "Oh, Valentine's Day is this week!"... Then she realized it's March! This is how I feel. It doesn't seem that 2 or 3 days should make a big difference in a month but February just escaped me.
We had an exciting past 2 weeks. Aggie, Beth and Mina came to visit and 1 week later Aggie returned with my Dad. We got to reciprocate the hospitality that Janna and Steve Laumann have showed us in Minneapolis and had them up to the Ranch for dinner last Friday night. I told Janna that since we will be in Minneapolis every summer for Coleson's annual checkups (and some times more) that I would like to put on an RMH dinner on or near the anniversary of Coleson's BMT, July 24th. So all you local Honeywellers and Friends, be prepared for some support come July!
We had a chance to put on a dinner for the PCH RMH 2 weeks ago. Rachel organized her friend's and put on a great spread. It was nice to be on the "other side of the buffet line". I got a chance to eat with one family and share our stories. With the different "groups" of friends that I have I hope to be able to do this frequently and especially on Coleson's original Birthday of October 4th. If anyone is interested in organizing a dinner, I would be more than happy to lend a hand.
That same weekend we had the Annual Plant sale at the FIGG garden. We almost tripled our sales from the year before thanks to a lot of hard work by this amazing group of gardeners. I remember when the garden was just an empty lot and wow has it transformed in just 3 years!
Coleson is continuing to taper off steroids and CSA. I hope by the next blog post that I can say he is off them completely and at the same time hopefully come of the overnight IV magnesium. He has just blossomed over the past few weeks. He is talking up a storm, very adventurous and wants to explore everywhere! He is not satisfied in the confines any longer! We are also exposing him to more kids (healthy ones) so that he can work on his social skills. He seems to be playing independently side by side other kids just fine.
Peyton continues to be a ham. Her newest saying is "Of course" as in "Of course I like tomatoes, Of course I'd like to play with friends, Of course, I'd like to brush my teeth", it doesn't matter what comes after "Of course", everything is "of course". And I'm fine with that! At least it isn't "Of course not!" She rode her horse, Tony this past weekend and we had plenty of quad rides too. Coleson loves horses as well so Paul is a very excited that both kids will be able to enjoy this with him.