Tuesday, August 23, 2011

Finally an Update!!

Sorry it has taken me so long to post.  In addition to everything else that happened last week, we had an internet and phone outage due to a lightning strike right overhead.  Finally got up and running yesterday after our service provider came out and discovered they had to re-run all the wiring as it all fried.  Plumbing, electrical, medical...all in one week.  The perfect Trifecta!! Hahaha!

Kenny is healing nicely and the swelling is completely gone.  Now it is important for us to be diligent with scar care so that 6-8 months from now it is as minimal as possible.  He will be using a silicone product over the area for that time period in order to promote healing and lesson scar tissue build up.  We will see how it goes, but he is even more pleased with the overall appearance and we are so happy for him.

We just returned from Grand Junction today where Matthew and I had a "date".  Well, if you call getting an MRI, a CT scan and a orthotics specialist all in one day a "date".  Somehow though, it did turn out to be a very special time together, and my usually quite son was talkative the entire 2 1/2 hour drive there and back.  We yacked about innovations in education and how technology will be integrated more and more, changing the face of education forever.  We visited about his brothers and sisters, laughing about their antics and talking about their futures.  He talked quite a bit about his own future, college, scholarships, and direction.  I just love being with any of our kids, they are the most interesting people I know!!  There is never a dull conversation and their observations are always so insightful to me. 

Our first stop was the orthotics office, where he again got forms made for new shoe inserts, then we moved on to discussion about the back brace he will be getting.  Here it is, and it's a beauty:

We had a very interesting conversation with the orthotist (Cool title, huh?).  He explained a lot to us, and was actually quite surprised when he learned Matthew's diagnosis.  He said that in over 25 years of doing this sort of work he had never seen anyone so young with it, that even though my online research indicated that high school and college athletes can occasionally be found to have the condition he personally had never worked with one, let alone one who was 12 years old. 

He also delivered a little more bad news.  This brace, if it is found to work, will have to be worn until Matthew reaches full skeletal maturity, which as he said at his young age is quite a long way off.  What concerned me is that he also said that even if it corrects itself without surgery, there is a high likelihood that the vertebrae that are slipping and separating from one another can re-slip a few years later.  Because Matthew may literally have to be in a back brace for years, there is great cause for concern about abdominal and other muscles deteriorating, so we need to ask about how to address that issue too.

Leaving his office Matthew was quite open to talking about things, and said he was thinking that if there was a real chance that long term bracing would correct it, but only for a few years, he would prefer to get surgery and get it truly repaired and not have to worry about it again.  We talked about how limited his life will be for awhile, regardless, and he accepted it with ease.  I am so thankful for his maturity, even at only 12 years old.  He is able to see things from all sides and even think about things we would never expect him to think about.  For example, he said to me "Mommy, what happens if this thing fails later on, and I am older and don't have health insurance and can't afford to take care of it?" and then "I could spend years unable to do things I want to do, trying to keep this from getting worse again, and then it still slips back into the old position and need surgery.  Or I could have surgery, get it over with, maybe have a year or two and then get back to what I want to do."  I was actually pretty surprised at his logic and practicality about the whole thing.  However, we will see what the test results provide in terms of more information, and will wait the four months if possible while doing more research. 

Then, my Little Old Soul asked if we could go to a used book store in between appointments, so off we went where he got a bundle of books that made him very happy.  It was quite funny when we got to the register and the sales lady asked me out of the blue "Do you homeschool?" and I replied that yes, I did, and that we had 5 kids at home all homeschooling.  She smiled and said "I could tell." and I asked how.  She answered "Homeschool kids always get the coolest variety of books, they are always the ones who you have to drag out of the bookstore."  I looked down at Matthew's selections and mine for the other kids as she held up one of Matt's selections... "Tactics of Modern Warfare:  Rapid Deployment in the 20th Century", "Annotated Guide:  Architecture The World's Greatest Buildings Explored and Explained".  Then there were a few others, for Joshua a 200 page full color DK book "The Ultimate Spy" which featured spy gear from past and present (He eagerly jumped up and down with excitement when he saw it), "Pocket Puzzles" for Kenny along with "Swiss Family Robinson" for alter reading for Matthew, a T-Shirt design book for Olesya along with several easier readers for both her and Angela.  Yea, a pretty eclectic bunch, I'd say. 

We then went on to the hospital for the scans, and then came on home where our friend Mr. Steve had spent the entire day watching the remainder of the kids as they worked on school work independently.  It was nice to be able to have that time alone with Matthew to talk about his emotions about all of this, and I think it really helped keep the stress down for him.  This is a lot for him to absorb, as all of a sudden his life has dramatically changed.  Sure, not in the way cancer would change it, but still, for a 12 year old to be told he can have almost no activity for at least a year or more other than walking  or maybe biking, that is a lot to take in.  Being a kid who thinks far ahead and has big dreams of perhaps military service, it also means readjusting, which thankfully he showed today he is handling well.  We are in "wait and see" mode, but being pro-active about thinking about options.  What has disturbed him the most is that he has to give up TaeKwonDo when he is one step away from Black Belt.  That was a bigger blow than anything, I think, but even that he handled with aplomb as he spoke today saying "Well, that just means that maybe Joshie and I will become black belts together, as he is the next closest!  That would be more fun anyway to take the test with him."

Speaking of thinking about options, Matthew has decided he wants to pursue archery seriously...so much so that he is even looking at the Cabela's catalog to see what compound bows might cost.  He had tried it in June at an outdoor event and really liked it, and then this past weekend he tried it again at another event here in town, where he also managed to make the front page of the paper as he tried it out.  We spoke with the gentleman there who happens to teach classes and he will gladly take Matthew on as a student, so where one door closes, another opens:

We are beginning our Busy Season as well in the next couple of weeks, as all the kids are beginning new activities.  We held things back a lot last year and the year before, needing time to readjust to new lives, etc. but we find we have a greater need for outside activities with homeschooling, so are allowing them all to try a few new things as long as we find our family life is not too overtaxed.  It would be easy to get too involved and never be home, which to some degree will happen no matter what, but we are all together and at home more than most families now that we are homeschooling, so we are going to take a step out and do a little more. 

The kids will all do TaeKwonDo with the exception of Matthew, then there are Kenny and Angela doing volleyball with the local homeschool group. They had their first practice yesterday and I was oroud of Kenny as he actually hit the ball a couple of times.  He has made a new friend there who he met at track and who also has cranio-facial issues and is about his size.  Hopefully this will be a good avenue for him to stretch and grow.  Angela did terrific and is going to be a very good player, it is easy to see.  I love though that on the way home she said to me "Actually Mama, sports are for fun but they are not what life is about.  I like to do it because it is nice to meet other kids, but I think school is more important and better for my life."  What a turnaround from the child a year and a half ago who had no interest in academics, hated books, and thought all she was good at was sports.  Now, she has so many interests that sports are secondary.  She has a much healthier perspective about it all, and that was great to hear...and to see her enjoy herself thoroughly on the court.  Olesya is terribly excited about taking a dance class one evening a week.  No, not ballet, not jazz...hip hop!!  This is so totally her, and I am glad she is giving it a try.  All of them will be taking art outside the house, as well as still taking music lessons.  We are going to be busy, at least during volleyball season!!  Somehow we must fit in archery for Matthew, it will be really important for him to feel he still can do something aside from academics.

Well, that's it...long update but grandma's need to be "in the know", so if I bored you to tears, I apologize.  Now that we are back online, I'll try to post more frequently!


Anonymous said...

This is a lot for me, as a reader and friend, to absorb. I am awed at the amount of changes each of you is absorbing and dealing with in mature and thoughtful ways. I am guessing that behind the scenes there are tough and questioning times for each of you, but you have laid a foundation on which to build wise decisions. The loving and respectful relationship you and Dominic have support each other and give structure and support to the children.

Someday, please use this blog and memory to write a book. You may not have a list of techniques for successful marriage and parenting, but the love and openness that come through here would come through in a book and give guidance to at least some people.

Prayers for you and each member of the family,

Hilary Marquis said...

I'm right here to talk. I've sat where Matthew is sitting right now. I get it, I remember it like it was yesterday. I have to say I am very impressed with his maturity over this. I'd like to say I was mature when it was me, but there was a lot of crying involved over my dreams of dancing professionally were taken away...Give me a call. I can give you/Matthew a few pointers for the brace. Mine was molded plastic, so this ought to be better!