Resilient

Resilient.  That is how I would describe Owen.  He is doing awesome now that we are home.    I have been under the weather the last 3 days, so I apologize for the delayed update.  Thank you for all your prayers.  It is such a humbling  experience when you realize that the only way you are experiencing such a peace in your heart and seeing such a calm in your 7 year old at such a time can only be attributed to the work of God through the prayers of many. So thank you.

Because I was not feeling so hot Monday, Eric took off work and drove us down.  It was nice to have him there, but I kept telling him that it made this surgery feel like a bigger deal than it was.  Because normally when Eric is there for surgery it IS a big deal (ie Tethered Cord, MACE/Monti). It's just the way we've chosen to do it in the past, but it was nice to have him there.  (I still think doctors talk longer when Dad is there.  annoying.)


First thing we did was drop of 12 pounds of pop tabs at RMH!  I tell you, I can hardly go to church a week without several people handing me a baggie (or a pretzel container) full of pop tabs!  What a blessing.  We are well on our way to our Million Tab goal.  At which time Owen will get a plaque and we will have raised a lot of money for the Ronald McDonald House.  Keep em coming!
We were able to speak with Dr. Kishan before surgery.  His understanding of the particular hazards of a spina bifida patient in a cast was comforting as he reassured me it should be fine. Still I am nervous, but choosing to be hopeful that all will be well. 

Dr. Kishan explaining what is involved in the surgery.

One great features we enjoyed about the new Day Surgery facilities was private rooms (with doors)—there were more than double the number ofrooms as well.  My favorite though has to be that now you keep your same nurse from admitting to discharge.  There is no separate recovery room.  No separate recovery staff. They bring him back to the same room. This saves time, and offers more continuity of care for the kids and families.
Owen went back around 11:45 and we were called back to see him at 2:15.  Lindsay, our favorite Child Life Specialist, came and helped Owen make a "smelly mask" for himself and for his giraffe.  She offered to go back with him. In the end though we opted for the Versed.  It makes him very loopy and he doesn't remember going back or going to sleep.  

Making a "smelly mask" with Miss Lindsay.

Lindsay even got a tiny mask for Owen's giraffe.

What would we do without the iPad?

Heading back to surgery.

 We grabbed some lunch in the cafeteria and enjoyed catching up with Heather Bowman (a fellow SB mom).  Her daughter Danielle is Owen's age and was having a Chiari Decompression that morning. 

The new Surgery Waiting was really an improvement.  First of all it was not FREEZING!  lots of private places to sit.  Actual consultation rooms so you don't hear everybody's business.  It was great.  Got to catch up with some of our favorite ladies there.  It is still kind of amazing to me that these people remember us every time!   

We had a good chat with another mom who's daughter has a tumor in her brain and was getting a second shunt placed within a few weeks of her first.  She was glad to talk with someone who had lived with a shunt for a long time.  I hope we were an encouragement.

Speaking of people remembering us, a nurse in Day Surg recognized Eric in the hall and came into our room gushing about "how long it had been" and "how was Owen?" and he was "so big."  Honestly I have no recollection of this girl.  And how it was Eric she recognized....? It was strange.  But good to be remembered I guess.   


Owen has always done great with anesthesia.  No vomiting etc. The only thing I've noticed is he wakes up angry.  He always has.  Even as a baby he would just growl at first.   This time was the same.  Despite my weeks of prepping about the IV... "and the way to get it out is to drink, not toscream"... it made no difference.  Bloody murder.    Owen has no memory of this at all.

discharged

They gave him a bright green cast because they were out of black, which is the color he requested.  Toes covered so he won't tear them up crawling.   We had to venture down to the Brace Shop to get a "cast shoe" that was small enough for his foot.  It works great.  He was walking that afternoon.

I am pleased with how well his knee is doing.  As you know I was concerned about this without his higher bracing.  I was surprised when Dr. Kishan said that Owen might be able to go back down to an AFO on that leg after surgery.  The improper alignment of his foot likely contributed significantly in his knee giving out the way it did.  I am still a bit dubious about this, but kind of excited to see if this is turns into a real possibility!  And true enough his little knee stays nice and straight as he's walking.  I can't really believe it.  Amazing really, how the foot's position has such an affect on the joints and back as you go up the body. Also, it is weird to SEE his knee.  It is usually covered by his long sock and surrounded by metal bars.  cool &  crazy!

Before we left we checked out the new Kid Zone!  It was amazing!  How I would have loved a place like this when the kids were really little and I routinely brought Liam and Kate with me.  Garth Brooks and Troy Aikman were the donors who made it possible.  There's baby toys, toddler toys, craft activities, a ambulance center for role play, pool table, air hocky, xbox, wii, recording studio for the Riley kids TV.  It is awesome.
   

checking out the kid zone!

playing xbox without his glasses (the lens popped out!)

he loved this so much.

Owen will get his cast off December 9th.  40 days to go.  Owen is counting it down.   Dr. Kishan said there is a "button" sewn through his foot holding the transferred tendon in place while he heals.  He'll snip that thread and pull it out after the cast is off.   This whole process should be interesting!  :)  

Please continue to pray for the safe healing of Owen's foot in the cast.  And also for me to be able to rest in the knowing that God is in control of what I can't control.   

Also, Owen signed his own cast!

While you're here, please click "follow by email" in the right side bar because soon I will stop updating caringbridge and only use this blog for updates on Owen.  If you get notifications through cb right now, you'll need to sign up for the blog notifications ASAP! 

Eric took photos on his phone, since when we got there I realized my camera was left on and the battery was dead.  I was particularly sad that my camera was useless Monday because I've been asked to speak at a Riley Luncheon again November 5th.  I was planning on doing more of a "photo-log" and walk them through our experience of surgery #28.   I think I'll still do this, only I won't have the photos I wish I did.  Oh well! 

Foot Surgery

Owen's foot surgery is scheduled for Monday, October 27th.  We are to arrive at Day Surgery in the new Simon Family Tower at 10:00am.  We should head home later the same day.   I am excited to see the new facilities!  

...and that is about all I'm excited for.

No, I take that back... we are also excited to check out the new "Riley Child Life Zone" that just opened.  I read on the Riley facebook page: "This state-of-the-art play area inside Riley Hospital for Children is a place where patients and their families can play, learn, laugh, & relax. The Child Life Zone will be open Monday to Friday from 10 am to 7:30 pm.  Looks really cool in the pictures.  

Other than those two things, I am dreading this surgery big time for my boy.

Not the surgery itself per se.  It should be no big deal as far as that goes.  It's the cast that has my stomach in knots.   

Owen is having a tendon release and a tendon transfer done to his left foot.  This should straighten it and allow it to rest in the correct alignment for walking in his braces.  Should be a simple and short surgery, but he must be in a cast for 5-6 weeks. 

Now, casts are no big deal. 

A pain, maybe.  

Stinky, literally.  

But manageable for sure.   

(Kate had one 2 years ago when she broke her arm.)  

It's the fact that I won't be able to SEE his foot for 6 weeks that terrifies me.

You see, he can't feel his feet.  Most people don't realize his is paralyzed from the kneed down.  He has little if any sensation below the knee as well.

When I step on a Lego, I may not think pain is a blessing, but truly it is.  When I step on a Lego I immediately remove my foot from the source of the pain.  Owen does would not. 

Owen has gotten horrible blisters and pressure sores just from walking... because he kept walking... because he didn't feel that his skin was breaking down.   Ever since a he was a toddler crawling, the kid has accidentally ripped all the skin off the tops of his toes by crawling on the cement (even with socks on).  Swimming is the most frequent occurrence for this because his skin is softened even more.    Even crawling on the carpet all day without socks or shoes on will often result in carpet burn and skin bleeding and peeling off his toes.   It is quite horrifying really to see his poor feet all torn up and he had no idea what was happening.   

Pain is a gift from God.  It really is.

Combine this lack of sensation with the poor circulation he has in his feet and you get very slow healing of wounds.  We've dealt with sores a number of times on his feet and it is no fun... especially for Owen.  It restricts his independence.  It keeps him from doing what he wants to do and has the long term result of losing strength from prolonged time of being off his feet.

This is why the cast scares me.  

What if the incisions are infected?  The cast will be holding his foot in a "new" position.  What if he develops a pressure sore?  or two?  I've seen pictures of SB kids coming out of casting with gruesome pressure sores.  So, yeah, the cast is the part of this I'm dreading the most.

I have been trying hard to balance being overly concerned and trusting that God has this under control.  There is a good possibility it could all be fine.   

It is just hard to imagine not seeing his foot for 6 weeks, when you do daily skin inspections.

I am choosing to trust that it will be fine.

And I am planning on asking the doctor what options we have.  A removable air cast?  A 3 week peek and re-cast?    Maybe these are options, maybe not.  But I think I will ask.  I am also planning to request the cast past his toes so he doesn't drag them when he crawls and tear them up as I mentioned earlier.

Dr. Kishan mentioned Owen may be able to walk on the cast.  It will be below the knee on his leg that needs full-leg bracing.  I'm not sure how well he will be able to walk because of that.  We will just have to see.

This weekend was an active one for Owen.  We went to a pumpkin patch in Convoy, Ohio for a homeschool field trip.  It was awesome.  And Owen walked and climbed and ran and jumped for about 3 hours.  Finally I got the stroller out of the car.  He was wiped.  

He played so hard outside this whole weekend.

Owen's stamina has been steadily increasing.  His strength and endurance for walking have improved significantly since the spring and summer.  He's been doing a fair job keeping up at our homeschool gym co-op classes every week.  I think that's been a great motivator for him.

Here is a video of him running on this giant inflatable bounce thing at the pumpkin patch.  He loved this so much!   It was bittersweet for me as I watched him, knowing that in a few short days a cast would put an end to the level of physical activity he has worked up towards this year.  It has been hard fought for him to get this far.  As a mama, it's hard to sign him up for a set-back.   (Also, it is freaky how fast this bounce thing allows him to move.  Must be giving him the spring in his step the braces take away. ?)

Yet, just today as Owen and I were again talking about what would happen Monday, I was reminded of another time I thought a surgery would set him back, but God used it for good.  The tie he was 13 months old and had just begun army crawling.  It took so so long to work up to that point.  It was a huge deal!  I knew that ater cleft palate repair surgery he would need to be in arm immobilizers for 3-5 weeks (which is a lot of time & strength lost when you're 13 months old).  But what I saw as the problem, God used for good. Those stupid arm immobilizers were just what Owen needed to figure out how to crawl on all fours!  —a milestone we did not dream he would reach at that age.   

Again, I will trust that God has a plan for this cast.  My desire is that that plan would include no sores when it's removed, an easy recovery, and quickly regaining his strength.   I should know by now though that sometimes things don't go the way we think they should.  But they always go the way God thinks they should. His ways are higher than mine.  

This surgery needs to happen.  

It's time.  

(Even though I came this close to canceling it yesterday).  

It's not really that big of a deal in the grand scheme of things.  

He's come through much much worse.   

Come what may, I know Owen is precious and dearly loved by my Heavenly Father.   

That needs to be enough.



Thanks for bearing with me as I use this caringbridge once again as a place to preach it to myself!

I will try to update on Monday.

____

How to receive Notifications on Owen's new Blog site

Some people have been asking how to receive notification emails from the new blog site my sister made for me to replace caringbridge.   Here's what I did today... I added a "Follow by Email" gadget to the top of the right column.  Just fill in your email there and you should receive emails notifying you when I post there, much like it was here.    For a little while I will continue to post on both sites until everyone who wants to has switched over.    

Click on this link to Owen's new update blog.  Fiill in your email address under "Follow by Email" in the right sidebar, then click Submit.

The Best Surprise Ever

About a month or so ago, my sister Kim gave me a great gift.  It completely blew me away and brought tears to my eyes.  It was a gift of time and a labor of love.

Over the last six months, Kim painstakingly moved EVERY SINGLE entry from this caringbridge journal to a new blog she made for me with blogger.

509 posts

five

hundred

and

nine.

Not only that but she moved all of your loving and thoughtful and encouraging guestbook comments over as well!  dates, names and all.

She tagged the posts by topic.  So finally when other SB moms ask me a question about our experience with Tethered Cord Surgery or Bladder surgery or whatever, I can directly point them to posts I wrote while in the middle of that.  Currently CB does not have that capability (much to my chargrin).

The only thing left for me to do was to insert photos into the posts.  Here's an interesting fact.... Did you know that when I started this caringbridge page 7 1/2 years ago we were only allowed 12 photos under 1megabyte each?!   A few years ago they increased that number to 50.  Now I think it's more, but you still can't link more than one photo within a post.  It is dumb. imo.

So Blogger will be great!  For so many reasons.   I have wanted to do this for a long time as you know, but have never had.... the time.

What a gift!

I had not unveiled this to you before now, because I had hoped to add those photos and, as Kim suggested, "make it my own".

But let's just be honest.

That's not gonna happen anytime soon either!

So without further ado, I direct you to our new and improved update blog for all things Owen.... http://owenmarkpotter.blogspot.com

This is exactly how Kim made it for us!  She cut out that cute warrior picture of Owen and everything.

For a while I will dual update on here and on the new site until you can all add the new blog to your rss reader feeds, or whatever they're called.

Probably I am more excited about this than anybody.  I hope it works for you all as well.  We so have appreciated the love and support and "therapy" we've received through keeping this journal over the past 7 years.  It will be such a gift to Owen someday, as it already has been to me.

Thanks, Kim!  You're the best!

It's not about the Running (or the Walking)

Today I sat through what seems like the millionth therapy evaluation for Owen.  These are never any fun.  The whole process just serves as a reminder of how your child falls short of the "norm", how he's different, or behind or not measuring up.  It brings to light all the areas of struggle.  Who of us would enjoy that!  

After a morning like this I always have to remind myself how my God sees my son.  Perfectly and wonderfully made [Psalm 139:13-18] and desperately in need of a savior [Rom 3:23].    I know we're in the middle of this Team Owen money raising thing—something we've never done before—and I realize that some of the message may be misunderstood by some.  

You see, even if the doctor who predicted before Owen's birth that he would "Never walk, never be normal" was right, God would still see my boy in the same way.  He is God and He does not make mistakes.  He desperately loves Owen (and you), so much that He sent His only and perfect Son to die in our place [John 3:16]!  The only thing we CAN'T do in God's eyes is save ourselves from our sin.  There's only love.

So here's what this shirt I designed for Team Owen means to me...  It's not bragging that Owen can run (which technically, he doesn't.)  It's not even celebrating that he can walk despite that doctor's predictions.  Though that's pretty cool.  It's not really about that stuff at all.  To me, this little story about a bee and Doctor Owl is all about NOT allowing others define who you are or what you can become!  I do not have to fit in a mold others have chosen for me, and neither do you!  Our God has bigger plans for us than that—we can become instruments to bring him glory!  [John 9]  And here's a little secret... He especially likes to do so through our weaknesses [2 Cor 12:10].

I pray that Owen (and you, and I) remember how God sees us—as his dearly loved children, created and loved before the foundations of the world. He wants nothing more than for us to realize our frailty and the depths of our sin and to turn to Him for help, accepting His free gift of salvation to all who believe [John 1:12].  

My hero Mr. Rogers used to say, "I like you just the way you are, just for being you."   May these shirts bring awareness to just that.   And may we have God's eyes of love when we look at others, and ourselves.  If He can save a sinner like me, there is no limit to what God can accomplish in our hearts and in our world!  He can teach us contentment in who we are and where we're at—in the middle of an earth-shattering diagnosis and even after yet another depressing eval.  When we have Christ we can rise above our circumstances and find contentment in Who we are in Christ [Phil 3:10-19].

Thankful He's not finished with me yet!

i run anyway

Help us raise money to help Riley Hospital for Children continue the great work they are doing for kids like Owen. 

Our entire family is participating in the Fort4Fitness races Sept 26 and 26th.  Owen will be completing the 1-mile race with his brothers and sisters. 

We are selling t-shirts and taking direct donations to Riley.  Our goal is to raise $1000!

Check out the "i run anyway" website we set up to explain it all!

The day I never thought would come

Just before bedtime Owen was completing the 30th time he has cathed himself!   Yes, we have been working on it for a week, and I'm pleased to announce we have taken a big first step in independence!

Yearly Spina Bifida Clinic Update

For my records:

Renal Ultrasound

- Everything looked good.  Healthy kidneys.  Debris in bladder.


Developmental  Peds

- weight -  eh.  okay. but not awesome.  38 lbs.
- height - shorty!   43"
- Suggested compression garments for sensory processing issues.
- Suggested startigng Occupational Therapy with a therapist familiar with sensory issues.


Neuro Surgery

- Gloria pulled up MRI scan for me so I could see syrinx for myself.
- The syrnix is tiny compared to his scan pre tethered cord 3 years ago. 
- She doesn't even think it was big enough to cause the symptoms he's been experiencing.  Weird. But not outside the realm of possibility.
- Said it was good that Owen says back hurts "all over" and not in just one spot.
- I am feeling MUCH more comfortable watching and waiting.  If it is TC it will get worse.  Possibly we took a pic of the syrinx as it was getting smaller.  As I look at my journalling, his symptoms have gradually slowed down since June.  Hopefully that will continue.
- Gloria agreed it is not worth detethering at this time.


Ortho - Most Surprising

- Dr. Kishan was out.  saw Sobus
- She says Owen has "aquired orthopedic deformities" in his feet.
     - heelcord tight & Left forefoot supinated and adducted. (Which means his foot points down and is difficult to get to 90°. also his foot turns in and rolls in.)
     - Right foot high arch - beginning of _______ deformity.  (I can't read it)  Basically beginning to "fold".  Will be more of an issue as he ages.  yay.  :(
- Dr. Sobus thinks Owen needs a Heel Cord Release on his left leg.
- Says it can be done in office and we should see Kishan in Sept.

IN THE OFFICE?  I had only ever heard of it being an outpatient proceedure.
She assured me he won't be able to feel it.   I left unconvinced that this was a good idea.

He will then be casted for 4-6 weeks.  Uhg.

Got on my Spina Bifida Facebook group and asked for others' experiences.  While indeed many have had it as outpatient, many have also had it done in office and indeed they don't feel it.   They will likely give him Versed.  That makes it seem more plausible.   A few also suggested I ask about Botox.

Will make appointment.

- Sobus also suggested starting Physical Therapy again to increase endurance, dynamic balance and improved gait.

______

Thoughts

- Relieved beyond belief about the syrinx.  Though puzzled now about source of symptoms.  (Ironically a tighting heel cord would be another one)

- Looks like I'm on the search for some new therapists!  

-  Ready to jump into the world of Ortho.  Up til now, Owen really hasn't had issues that needed intervention (other than bracing of course.)

- So thankful for our family and friends and all the prayers for our little guy.