10.22.2012

Waiting for Winter


We've seen quite a few of our doctors recently.  To be honest, I'm really struggling.  My heart hurts for what is coming up in our winter/spring.  
We've known we had surgeries coming up... but they always seemed more far away and abstract.
Then we met with a surgeon last week and really began planning and talking dates.
I learned that Ellie's surgery is actually in two parts.  She will have a rather complex procedure involving multiple surgeons operating on both wrists and both feet.  The initial surgery will take 4-6 hours.  She will then be casted (both arms and both legs up to her hips.)  The arm casts will last 4 weeks (I think.)  After 6 weeks, she will go under anesthesia again and have pins removed from her feet.  She will then get leg casts again for another 6 weeks.  So that's 12 weeks in two leg casts.  3 months.  This is important to help her to be able to walk and to also get more function out of her hands.
And her surgeon told me that there is a strong possibility that her body will naturally regress (typical in patients with arthrogryposis) so she will likely need all of this again in a few years.
Ugh.

Meanwhile, Will will (most likely) have a surgery as well resulting in him having his arm in a cast for about a month.  This might seem like not too big a deal... except that Will is really dependent on using both hands for most activities.  Having his right hand/arm in a cast will severely limit his independence (at least as he knows it.)  Currently, he uses both hands to dress himself, color, play, feed himself, personal hygiene, school work, hold a cup, etc.  It's hard for me to even fathom what it will be like to watch him struggle to do things that he is accustomed to easily doing with both hands.  (I just re-read this and I couldn't help but smile... here I am worried about how he will adapt.  My child, born with only partial hands and 3 partial fingers and he has adapted tremendously to doing life with what he has at his disposal.)  I'm sure he will adapt somewhat but it will be a challenge for him to have to relearn many things at age 5  - and with the added pain of recovering from hand surgery.  Also - they are operating on his right hand which has more function than his left.
  Our goal is to hopefully begin to give him more independence and use of a single hand for some activities.  Actually, his surgery is step one - there will be a more complex surgery in about 2 years.

I mentioned to the team in the hospital the other day that Mommy might need some of their recovery pain killers.:)
I  kid.  I kid.
But, seriously?  Two kids in casts?  Two surgeries approx 2 weeks apart and then a third surgery 4 weeks later?
Husband?  It's a good time to book a vacation.  Like now.  Please.
May is looking particularly perfect.

Recently, I felt the Lord direct me to Lamentations 3.  I read one of my favorite scriptures about God's faithfulness and His daily mercies.  I know from our season of the spica cast that He is faithful.  I know He will provide the friends and support system we need.  I know He will give us grace and mercy to get through each day.  I know all of that in my mind because I have lived it numerous times on this journey.
But I also know that those seasons of being so dependent on others, of being so bone weary, of worrying in waiting rooms and holding hurting babies in recovery, of learning medical skills like cast care I never imagined I would have to do... it's so so hard.
I felt God lead me further in Lamentations 3 and I read that it is good to wait for the Lord.  "Wait" has been on my heart a lot lately.  We went to church and I was surprised to learn who was leading worship - Jonny Diaz. He sings a song I love, "Waiting Room."  I rocked Will in my little chair and listened to the truth in that song.  
I'm in a waiting room now.  Or I suppose I'm in the waiting - preparing my heart for the real waiting rooms to come in a few short months.

Over the summer, I began to drop out of several great organizations - MOPS and BSF.  I knew I just needed my days free of commitments apart from kids' therapies.
I wasn't thinking too far ahead at the time that I dropped out.  Yet, God has so affirmed those decisions for this season of life.  Will's anxiety has been so difficult and school drop off is often really, really hard.  I wouldn't be able to go through that and then try to be somewhere on time and holding myself together.  And with surgeries and long recoveries coming soon, it is good that I can devote my days to caring for my kiddos.  

I don't want to wallow.  These surgeries are important for ultimately giving my kids more independence.  I trust the surgeons.  
Yet my heart aches.  I don't want to spend 3-4 months of 2013 in hospitals and casts.  I don't want to do cast care again.  
A good friend once told me that times like these are hard but they aren't bad.  Having a child with differences or with a diagnosis is not bad.  
It is good.  It is blessing upon blessing.  We have incredible joy.  
I am confident that our winter will be filled with joy.  There will be laughter in our home.  We will learn new ways to tickle kids in casts.
But my friend has reminded me that hard is still hard.  It's not bad.  It's just hard.
And this is hard.
It is really, really hard.
And my heart hurts and I keep crying (not in front of kids) because it's just not how I want to spend the winter and spring. 

If you think of it, will you pray for our wisdom?  We may go back to Boston soon for a 2nd/5th opinion.  We have some doubts about one of the surgeries but, honestly, that's because it is not a typical surgery - I can't just go research it online and feel educated.  Doctors are creatively trying to come up with solutions to fit Will's desires and goals and we have to choose to trust.
It's really hard to trust someone with your child's handprint.

Will you pray for my heart?  The idea of changing my child's handprint just about breaks me.  I'll be doing lots of handprint crafts in the coming weeks.

Would you pray for us to make unified decisions?  

Would you pray for our wisdom as we determine how to handle routine things - like school for Will (do we pull him out for a month?  Do we hire an assistant for him?  Do we send him knowing he will be frustrated because his participation will be so limited with his hand in a cast? )  Church?  Again - do we send the kids to their classes?  Do we just keep them home for months?  

At this point, we are waiting.  We are waiting for the surgeons and operating room to be able to line up their schedules with ours.  We are waiting for confirmation of dates.
And we are waiting for peace in our hearts.

Some pictures from some of our waiting recently:

Will lifting weights (ie:  his prosthetic legs) while waiting to see a doctor.

 Playing with a sticker book with Lovie in a hospital waiting room


 Practicing writing letters with Lovie while waiting for a doctor  
Lucky for me, Lovie was in Dallas last week so I picked her up at her hotel and bribed her with cute kids to get her help at the hospital for the day.


Ellie is wanting more and more to walk in public.  Her preferred method is "walking with Mommy" (ie:  Mommy holds her hands.)  This works at the park and places where her walker won't fit.  But when I need to get things off shelves like at the store, this method isn't as good.
She recently insisted on walking in the grocery store.  It was the morning and the store wasn't crowded so I thought it might be good practice.
We grabbed her walker and she promptly refused to use it.  She enjoyed practicing her standing while I grabbed groceries.
Yay for therapy plus grocery shopping!

One pretty Saturday, I took the kids to the zoo for the morning.  I also took Ellie's walker and we kind of forced some therapy on her... 
Will & I would step closer to the animals and she would be motivated to walk towards the animals!  It was awesome!
The only catch was that hills are not good with the walker (yet.)  Down hill is scary because the walker gets away from her and then she would fall.  Up hill is hard because it rolls back towards her and she doesn't yet have the strength to push up hill.  And, of course, this particular walker doesn't have swivel wheels.
So, basically, it was great at the zoo as long as we had flat, straight areas to practice!  We got about 3 or 4 good little practices in.  
It's so fun to see her start to have a little more independence and upright mobility in public!


4 thoughts:

The Reeves bunch said...

Go Ellie GO! I love that video! Her smile is so adorable! I will be praying for you dear friend. I know that times are tough, but know that God is stronger and tougher than any of the circumstances. He will carry you through. We will be right there with you in a few weeks and I am struggling with this surgery as well for Eli. It was encouraging to me to see I am not the only one that worries about the surgeries and the recovery time for our kiddos. I will be praying alongside you!

Tracey S. said...

I love your blog, your kids are just so adorable! If you want an alternative to repeat major surgery on Ellie feet's please let me know. I can give you the name and email address of a specialist who never resorts to clubfoot surgery (posterior-medial releases), his approach to arthrogrypotic clubfoot is different than the 'model' I grew up under and that most doctors still use, which is surgery at 1 or 2 and the same surgery or a bigger surgery again at 8-9 and maybe even fusion at 12 or skeletal maturity depending on the degree of regression. The time in casts is still pretty close to the same b/c he uses Ponseti Casting and achilles tentomies but he is more aggressive with the manipulations. He regularly fully corrects the feet of 8-9 yr olds with AMC who have neglected clubfeet because they were born abroad. Have her doctors talked to you about scar tissue and stiffness of her feet long-term?

Tracey S. said...

I love your blog, your kids are just so adorable! If you want an alternative to repeat major surgery on Ellie feet's please let me know. I can give you the name and email address of a specialist who never resorts to clubfoot surgery (posterior-medial releases), his approach to arthrogrypotic clubfoot is different than the 'model' I grew up under and that most doctors still use, which is surgery at 1 or 2 and the same surgery or a bigger surgery again at 8-9 and maybe even fusion at 12 or skeletal maturity depending on the degree of regression. The time in casts is still pretty close to the same b/c he uses Ponseti Casting and achilles tentomies but he is more aggressive with the manipulations. He regularly fully corrects the feet of 8-9 yr olds with AMC who have neglected clubfeet because they were born abroad. Have her doctors talked to you about scar tissue and stiffness of her feet long-term?

lisa w. said...

Praying for wisdom and your heart; clarity and lifting worries.
lisa w.

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