Tuesday, August 16, 2011

Not Such Good News :-(

It's been a long day...heck, it's been a long couple of weeks...and today's news was surprising and not what we had hoped for.  Dominick and I are both processing this, and are very concerned but trying to remind ourselves Who is in control and that in the long run, this is but another bump in the road.  I guess it is a bump I was emotionally ill prepared for today, probably because I am just so exhausted.

Matt's appointment went well, and we did get answers, but they were very different from what we anticipated.  I was there with all 5 kids, and the other 4 waited in the waiting area.  I told them to expect about 30 minutes.  Two hours later we finally emerged.  What a blessing it is to have kids who allowed me piece of mind by knowing that I didn't need to worry about them or their behavior when out there alone for that long.  When we came out, there all four sat patiently, books in hand quietly reading and not disturbing a sole.

We expected a quick re-check, sharing that Matt was still having some pain, and getting a prescription for new orthotics.  We departed with a diagnosis of a serious back condition that is likely to need surgery because it is advanced beyond the norm.  Matthew's leg pain is being caused in part by a condition called spondylolysis and spondylolosthesis.  What has happened is that one of his lower lumbar vertebra was either weakened due to congenital issues or trauma...but it is/was fractured.  This causes it to shift out of place and compress nerves, causing pain and other issues.

It was only caught because of a last minute question asked by the MD after being unable to figure out what was structural causing what Matt was describing, and my prompting of Matthew yesterday to share everything led to him making a one sentence statement about pain shifting and sometimes being in his buttocks that made her suggest getting a back x-ray, just to rule anything out.  One minute after seeing the x-ray and it was clear even to my untrained eye that something was definitely wrong.

Normally, this condition can heal itself when caught early.  It is not totally  uncommon in young kids this age, and that often after a period of profound growth like Matt has had this year the condition can become more noticeable.  Usually rest for 4-6 months from physical activities can allow time for the bone to heal on its own, and we are indeed going to try that at the MD's suggestion.  Matthew will be wearing some sort of mild back brace for that time.  However, as she first started talking to me she immediately jumped to surgical intervention in her explanation, because the shifting is quite pronounced.  While she said "Sometimes with rest we find these can heal" she also went on to say she was immediately ordering a CT scan as well as an MRI because she was concerned about the degree to which this had shifted, and in talking with me discovered that Matthew has walked like this (a little sway backed) since toddlerhood.  His long history of foot and hip pain means it is likely he has lived with this since a very young age.  She also said that malnutrition most likely definitely contributed to it, as this is an area where bone can be thin anyway, and his lack of decent nutrition in his first year and perhaps in-utero certainly didn't help.

So really, it is three different problems in one.  He definitely needs orthotic intervention for his feet, and then these two conditions together which affect his back and nerves to lower extremities.  We will be getting the MRI and CT scan done next Tuesday in Grand Junction, and will make appointments for the same specialist for the orthotics and the back support, then we will hear from the MD when she gets the results.  She scheduled us for a follow up in 4 months, but said that is dependent upon what she finds with the scans.  If she doesn't like what she sees, she said she will schedule us to return immediately to look at surgical options.  If everything looks stable, then we see what things look like in 4 months and hope for the best.  Untreated and at his current state of shifting, this can lead to really serious problems.  If he has to have surgery, we were told it would actually be two surgeries...one to wire things together, and another later to remove hardware.

While standing there I just felt so overwhelmed.  Coming off an already emotional week, being in overdrive myself at the moment, coming off 3 hours sleep the night before, it felt like just too much to take in.  Then I thought about other families who deal with SO much more...Shannon and her family with little Marissa's 30+ surgeries, families with children whose emotional needs effect every moment of every day, families whose adopted children are so emotionally damaged that they will never ever bond with them and will grow ever more violent with each passing day.  How DARE I think that THIS is overwhelming??  It just caught me off guard and ill prepared, thinking you are going in for shoe inserts and discovering your son has potentially crippling spinal issues that have gone undiagnosed far too long is quite another.

But I couldn't help but think on the long drive home about what this might mean for Matt's future, for his dreams.  Would this automatically preclude him from entering the Air Force should he decide to go that route?  Would he heal well if he indeed needed surgery, or would it be like with adults where most are never really the same afterward?   Looking back over the past 11 years, was there anything we missed...should we have pressed harder with the orthopedic issues that have plagued him for at least 6 years?  Even this time around it almost wasn't caught.  Why didn't I suspect it was something more?  He has always walked stiff backed and less loosely than others, but we just thought that was Matthew, not a problem.

Ahhh...this one I will probably struggle with for awhile.  As Dominick and I talked about this evening, with Kenny we expected all that has happened.  It doesn't make it easier, but we knew what was ahead.  This was a complete surprise, and was perhaps preventable...if we had adopted him a few months sooner, if there had been better nutrition at a young age (being taken off formula at 4 months old and having tea in a bottle was certainly not helpful), who knows?  Was there a genetic component?  Did Matt experience some sort of traumatic event in the orphanage that caused a fracture?  Was it a combination?

And the bigger question, will he have to go through surgery or will, by some miracle, this begin to heal on its own?  The MD was quite skeptical but wanted to allow for the possibility, of course not wanting to jump too quickly to surgical intervention.

Where is the good in this?  Where is God on days like this when I want to throw my hands up in the air and say "Why are you throwing us another loop??? This is too hard!".  Thankfully, blessedly, God's presence is felt even on days like this when my own exhaustion magnifies everything.

Let's find God tonight, because I need to:

 In the span of just a few short days Dominick and I could have found ourselves under mounting debt with a quick hit of $10,000 owed in medical bills for the boys with our insurance deductible needing to be paid, but God has taken care of that for us with wonderful hospitals and terrific physicians and coverage for bills that we would be at the bank tomorrow taking out a loan to cover.  Tonight though, we are not filling out loan applications nor worrying about their care over the coming years.

Kenny feels he is handsome.  Finally.

Matthew's back is not broken.  Well, technically due to the fracture I guess it is, but he is not paralyzed, nor bound for a wheelchair for the rest of his life.

Three kids are physically healthy.

Five kids are emotionally healthy.

Monday evening while playing in the park, I was sitting and visiting with friends on a bench in the twilight when one of them turns to me and says "You can sure see that your children love their Mom a whole lot, and they are so kind!".

Dominick's business is still afloat, despite how hard a year it has been.  Food was on the table tonight, even if it was a quickie of french toast sticks and grapes.

We didn't have a flat tire on the way home.

There are friends who continue to love us, nurture us and support us, even when it is hard, even when they must get sick of spending free time helping us out.  Phone calls checking up on us while still driving through No Man's Land (Thanks Jill!), emails, hugs...what a precious gift each one is.

Oh, I needed that!  God IS all around, God is in the laughter in the next room, in the crickets chirping outside, in Sunny curled up on the couch, in my warm bed waiting for me.

Tomorrow will be recuperation day.  No place to go, no reason to get up early, nothing we have to do.  All worries I think I am going to put in God's hip pocket for the evening.  It can all be handed back over to me tomorrow if I decide I really need to carry it all.

And maybe, if I am indeed growing in wisdom and maturity, I will leave those worries right there in God's pocket where they really belong.

8 comments:

Anonymous said...

I, along with an army of lovers of your family, will be praying for Matthew's healing, for your growing into this new revelation, and for you to gain strength and energy.

I hear the anxiety, worry, second guessing. I don't want to make light of that, but I do want to assure you that not all adults who have back surgery find themselves never the same as they were before. I am better than before, free of pain, have full mobility, and am thankful for back surgery. I still pray for Matthew's healing, but I want you to know that whichever way it goes, it will improve Matthew's future as it becomes less painful or even pain free (as I am).

If you need a diversion or break, let me know. I'll do either or both.

Love,
Lael

Frankity said...

I am so sorry Matthew is hurting. I appreciate Lael's input, and am glad things have gone well. I wanted to present another option to become less painful/pain free... Quickly, I am a candidate for disc replacement at L4/L5 and fusion above and below, from an accident ten years ago. I had lived with constant chronic pain, sometimes putting me out of work, sometimes leaving me in tears on the floor. I am only (only?) 34 years old, and have been reluctant to undergo such a physiologically altering surgery at my age -- what will it look like when I'm an old woman? What will happen to me, if the surgery fails later in life? I also worried about being so young, and being a mother, how would I heal quickly enough to keep up with the kids and also go back to work?

So I refused the surgery, even though several orthopedic surgeons here (very respected, in Los Angeles) told me it was really my only option. One day, struggling at the gym, a woman stopped me and gave me a chiropractor's card. He isn't just any old chiropractor -- he does *not* pop or crack anything into place. He does "non-force chiropractic" adjustment. By non-force, it means that he only massages/manipulates the small tissues around the injured parts. I know it doesn't sound like much, but breaking up that scar tissue is restorative. It doesn't change the physiology of the injured parts of the spine, but it does build up and change the muscle structure *around* the injury, which ends up supporting that area more. He also works on my hips and hamstrings, because that plays a role in over-compensating for an injury.

My disease is progressive (disc degeneration, bone spur, herniation, nerve involvement, sciatica), but what this doctor has done has kept me out of the operating room, and has conquered my pain. I am thinking/hoping he has slowed down the disc degeneration. I don't need any medications anymore. I'm not hurting. I've returned to a quality of life I forgot I ever had.

I know this must all sound like quack medicine, but it really is true. He has so many patients that rave about him (he says he has a 98% success rate in helping any spine). I think his technique is similar to myofascial release. This is his website, http://www.drcornett.net/, if you want to read about it. I can tell you, he is a good man with a good heart. He's truly not one of those doctors in it for the money. He would take your phone call and give you advice and options, even if you are not in the area. You can tell him "Julie" referred you. And I think you can see my email address on your side of things? If you want to email me, I would be happy to answer any of your questions. I am not a "non-surgery" or new age zealot. I've had surgeries in life, I gladly go to Western doctors first and foremost, but this time, something in the back of my head told me to wait, wait, wait, and I'm glad I did.

best,
Julie

Anonymous said...

I like how you remember that God is at work here, as it reminds how He has worked in my life. He is always with us, including my three girls. Thanks for the reminder. It's nice to know that others can see His work and to have faith in it.

Robin

Tammy said...

Cindy, you're whole family is in my thoughts and prayers tonight. It seems like you just get done dealing with one kid's issues and then another one is waiting. I'm sure you must be exhausted. However, everything looks better with a good night's rest (which I believe you got today :-) And God truly will find a way to make it work. I am still paying for my son's therapy bills too but at the end of the day when he falls asleep in my arms, somehow it doesn't matter. He's happy and he's (pretty much) healthy. I pray you will find that inner peace as well.

Anonymous said...

We used to sing a song in youth group," Let go and let God have his wonderful way,let go and let God have his way...."Do,please try to get some rest, knowing God is still in charge.
Love, Elva

Anonymous said...

Cindy,

It is OK to be overwhelmed. You have been running a marathon all summer long - some of it fun, but difficult regardless. Feeling overwhelmed given what you are dealing with is human. Last I checked, you (and I) were still human beings. To my mind, the good news is that you know (and relatively quickly) what the issue is. You have a diagnosis, you have a name to slap on it. My advice would be to do a bit of research (I am sure you already have) and get a second or third opinion about that surgery...sometimes you can even submit tests, etc. to doctors long distance and get an opinion. One step in front of the other, my friend, just one step in front of the other. Kelly

Carrie DeLille said...

Cindy,
Praying for you and yours....I thank you for putting my struggles into perspective. Wish I didn't need that so often. You see the blessings and sometimes I'm just too tired to recognize them. Thank you for your post and for your bright attitude and for being such an example of someone who trusts in the true healer. I love you friend!

Christina said...

I love your attitude Cindy, I really do. I read your blog and look at your perspective and I know things are going to be ok. Thank you. I'll be keeping all of you in my prayers.

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