The good, the bad and the ugly...

Going to Children's Hospital in Boston takes a lot out of me.  My stress is heightened and I go from being SO incredibly grateful for the blessings that surround me to being incredibly sorrowful at what I see there.

Today was no different.

The faces were different from those I had seen before, but the IV poles, bandaged bodies and frowns were the same.  There is always something worse, always someONE worse... it's overwhelming... and then I get giddy because we HAVE come a long way and ARE so blessed.  I told you... emotional doesn't even begin to cover how I feel toward that place.

I came home and had a good, long, hard, ugly cry... and now I'm smiling (and exhausted).  Aren't you glad you're not married to me?  

Anyway... Josh's hip...

The Good News... Dr. Kim reviewed the x-rays from last time and ordered new ones.
He does NOT (repeat... does NOT) see any evidence of arthritis.  There ARE some changes that COULD be consistent with arthritis, but there are typically other things that show up as well... none of which Josh has.  The hip joint itself, while looser than he wishes it was, is fairly stable.  Dr. Kim couldn't get it to dislocate at all... and he tried, I watched him.  The impingement syndrome that he thought might be a possibility last time doesn't appear to still be in the running as the pain culprit (due to the ball of the hip looking so lovely).  And the last thing Dr. Kim was concerned about (a blood flow issue common in folks with Down Syndrome) did NOT appear to be present on today's films (which is REALLY good because that is nothing he can fix).

The Bad News... See above.

Basically, the bad news is that there is no apparent reason for the pain that Josh is experiencing.  We asked all the questions we could think to ask, reviewed all the possibilities, discussed treatment of the possibilities that we had ruled out and then talked some more.  Dr. Kim said he could sense our frustration (ya think?) and asked us to be patient (ya think?).  He asked that we give things another month or so and, if the pain doesn't calm down, he will order an MRI.  He said it could just be muscular... and as we were riding home we thought back to when it started (or increased... because he has had pain everyday for a while but nothing like these past 3 weeks)... and we realized, it DID increase when he started getting sick with this icky virus that he's still harboring.  So maybe... just maybe... it will lessen and all will be well again.  That's our hope anyway.


The Ugly... Dr. Kim has lymphoma.  His lymphoma is the type that cannot be cured.  He is a good man.  He's humble and smart and honest... and scared.  He didn't say that, but the look in his eyes as he spoke, the gray hairs that have never been there before, the way he had to sit to talk and got short of breath... I could tell.  He spoke openly about his disease and thanked us profusely for asking.  He's not an overly talkative man but seemed genuinely happy that we cared.  Please pray for him.

Now, go love on your loved ones.  It's Valentine's Day after all.  Pull them close and tell them how much you love and appreciate them.  Do something special for them... even if it's only a compliment.  It's important.

Me & My Valentine

(Hawaii, 2005)

Jon put this old'ish photo on as my screensaver this week... to remind me of how much he loves me, he said.   We look young and well rested.  A lot has changed.  hahaha!!

Love,
Susan

You put your right hip in...

you take your right hip out, you put your right hip in and you shake it all about... you do the hokey pokey and you turn yourself about...

Josh takes this song literally.

He puts his right hip in and he takes his right hip out... of joint that is. 

So we're off to Boston again on Thursday to meet with Dr. Kim.  Dr. Kim has much experience with 'the Down Syndrome hip'.  I have been told that he pioneered the procedure he did on Josh's hip several years ago.  I have even been told that he travels the country teaching the procedure.  I haven't googled any of that so I don't know if it's true, but I have found several of his 'periodicals' online about 'the Down Syndrome hip'. 

We met with Dr. Kim several times before the surgery and he assured us that we didn't have a choice in the matter... that Josh had to have the surgery, that we needed to give him this chance.


Dr. Kim also assured us that he had never had one fail.

Enter... the Lewis family. 

You know when you see the words "results not typical"?  Well, that usually means us.  If it's not typical to have strep 27 times in your life then you know that one of us (or several, as the case may be) will have it that many times (slight exaggeration for point making purposes).  If it's not typical for a 13 y/o to have the aches and pains of an 80 y/o man on a daily basis, then you know that one of MY kids is that 13 y/o (unfortunately, no exaggeration there).  If it's not typical for hips to come out of joint once they have been surgically sewn in there, then you know you're dealing with a Lewis.  

We just aren't normal.  We have weird things.  A lot of weird things.  Josh's surgery failed.  Dr. Kim does not have bragging rights to the 'Down Syndrome hip' anymore.  He, unfortunately, has had one fail. 

Josh now has pain on a daily basis.  He had NO pain prior to surgery... not even once did he complain of pain in that hip.  Ever. But we decided to have the surgery, even without pain, to save the hip from irreversible damage (and a new hip early in his teen years).   But did we save it?  Did we trust God or did we make a rash decision that has caused Josh years of pain (sorry... the guilt from putting Josh thru that surgery is always sneaking up on me)?

The last time we met with Dr. Kim, he was very apologetic and humble, admitting that he doesn't know what to do or where to go from here.  Trust me, while I appreciate his total honesty, it was a hard pill to swallow.  Remember, he pioneered the surgery.  We have the best of the best here folks.  Nobody to consult with, get a 2nd opinion from or discuss the situation with... and he told us that... that he didn't have anyone to consult with, get a 2nd opinion from or discuss the situation with. 

His last x-ray showed arthritis.  He's nine years old.  Arthritis.  And not just a little bit.  Dr. Kim wasn't present at that visit (sadly, he's undergoing cancer treatments), but he was consulted and we emailed and no decisions were able to be reached.  "We wait," he said.  "I really don't want to touch the hip surgically again until he's a teenager,"  he said.

Fast forward another year (or has it been more?), and Thursday we'll discuss things again.  We have to do something.  Jon asked why we're even going back when they don't know anything... said there's nothing....

And my only answer is because Josh is in pain. Every day. His life is being altered and he's missing out on a lot of things that he loves (jumping, dancing with all his might, playing kickball and wrestling with Caleb and Jared just to name a few).  He asks for medicine on a daily (and nightly) basis.  He cries because it hurts.  I often hear him praying when he's alone, asking God to 'help ma hip feel bedda".  He is sore and sad.  We have to do something. 

As I was thinking about this yesterday, I remembered a verse God gave to me right after the hip surgery.  I'm sure you could probably have guessed, Josh's recovery was not typical.  He was OUT of it.  He literally was not with us for a week after that surgery.  Due to pain and other mind altering medications they kept giving to make things better, he wasn't even with us. 

I begged for them to stop the medications but they were determined that he was in pain and needed those meds to get thru.  I'm not kidding... I begged.  They were the doctors tho.  They had the degrees and initials behind their names.  What did I know? 

During that very long and sometimes touch and go 7 days, I spent a lot of time trying to figure things out.  I googled til the cows came home and couldn't find reasons for Josh's medical issues.  And one day, as I sat in the hospital room watching Josh's oxygen levels dip to dangerous levels, I opened my Bible for help.  I was looking for a certain verse and I knew it was in Isaiah.  I didn't find that particular verse because God had something way better for me that day.  I found this...

"For my thoughts are not your thoughts, neither are your ways my ways,"  declares the Lord.
"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."  Isaiah 55:8-9

Whoa... wait!  Were you talkin' to me, God? 

Never in my life have I been reminded to vividly that doctors are only human.  Medicine is not an exact science.  There is only One that knows.  There is only One that is exact.  

And we can trust Him. 

Even if Josh is in pain every day, we can trust Him.

Even if Jared is in pain every day, we can trust Him. 


I will trust that, in His perfect time, Josh's hip will 'feel bedda'. 

I will trust that, in His perfect time, Jared's back will be restored to that of a 'typical' 13 y/o and every joint in his body will not ache constantly.

And, I will also trust that, if those things aren't God's will for my kids, then we will be given the strength and courage to continue on trusting Him. 

Will you pray with me that Dr. Kim might have ideas on Thursday?

The literal Hokey-Pokey

(hip totally out in this shot)

 I mean, isn't this the way everyone watches television?

And... you're welcome for causing the Hokey Pokey song to be stuck in your head for the rest of the day. 

That's what it's all AH-BOUT!

Love, Susan