Detethering Surgery: Tuesday, April 3rd.

I woke up this morning with butterflies all in my stomach.  I knew we would find out what was going on with Caleb and I went back and forth in my mind on whether or not I even wanted to know.  We waited almost 2 hours before we saw the doctor.  Making an already nervous, anxious momma wait 2 hours should be a felony or something.  Or they should at least pass out doses of versed.  When we finally saw the doctor he pulled up all the MRI images on the computer so we could see what he was talking about.  They checked Caleb's brain to make sure the shunt is working and everything looks good there.  There is a small pocket of fluid in the spinal cord, it is located in the neck area.  Caleb has had this pocket of fluid for some time, it was present on a MRI he had over 3 years ago.  We weren't really surprised by the pocket of fluid, although it does look like it might be bigger than it was when Caleb was 3.  The neurosurgeon did say that the pocket of fluid can cause loss of function but with the location of the fluid being so high he would expect Caleb to have lost function in his arms and hands...which we have not seen.  He did show us that Caleb's cord is tethered and is likely the cause of his loss of function, although we can't be certain until it is fixed.  My gut tells me it the tethered cord causing the issues.  He said that tethered cord surgery isn't typically a big deal but it does become much more complicated in kids like Caleb (SB) who have a shunt, who have Arnold Chiari Malformation, AND have a pocket of fluid.  There are just a lot of factors to consider when dealing with Caleb.  The neurosurgeon described detethering the spinal cord kinda like trying to get gum out of hair.  It's difficult and delicate.  Because Caleb has a shunt he wants to put in an ICP monitor before the surgery.  This will be done while Caleb is asleep.  Basically they will monitor the pressure in Caleb's brain to make sure that it is stable before they proceed with the detethering.  To place the ICP they have to drill into the skull (I think it sounds way worse than it is) to place a catheter into the brain that will allow them to monitor the pressure.  The neurosurgeon said the ICP monitor will only be in for a few minutes and Caleb will be asleep the entire time.  There is an additional risk in doing this, like bleeding, infection, etc...but it is unlikely.  If the pressure in Caleb's brain is good then they will go ahead with the detethering.  He said to expect anywhere from 4 days to a full week in the hospital, with a somewhat lengthy recovery.  As we were leaving the office the neurosurgeon complimented me on getting things done so quickly.  I told him about my fit over the phone with the nurse and he smiled and said: "I know, I heard."  I asked him if I was right to fight to get things moving and he said "Absolutely, you did the right thing.  

Surgery is already scheduled for Tuesday, April 3rd.  

So, there ya go.  I'm thankful that I wasn't surprised because I had already begun to prepare myself for this.  I knew in my gut that it was tethered cord and that Caleb would need surgery.  But, hearing the doctor say all of that stung a bit.  I'm not terribly worried about the surgery itself, I trust the doctors involved and I know Caleb will be in good hands.  I am worried about the recovery.  I know that he won't really be allowed to move much and will have to stay on his tummy or side for a few days.  I'm worried about how hard he will have to work to gain back function.  His nerves are going to be in such a state of shock that it will take time for them to bounce back.  I hate to put him through this.  He's not going to understand why all of this has to happen.  He is going to HATE missing school.  I just hope that I can keep his spirits up throughout the recovery.  This just isn't going to be fun, at all.  We haven't told him yet because he is a worrier (he gets that from his momma) and we don't want him to be anxious all weekend.

 I trust God and I know that He loves Caleb too, even more than I do.  I take comfort in knowing that God knew about all of this long before I did.  He is not surprised.  He is not worried.  He's got this.  It is just hard as a momma to see our kids go through anything tough.  I wish I could take his place, but I can't.  I appreciate all the prayers so much.  I definitely feel peace about it all.  I have been overwhelmed by all the comments and messages on Facebook.  Each one brings me to tears.  I especially love the bible verses some of you have shared. I think I'll write all these verses down and keep them with me during this process.  Hearing and reading God's word always brings me peace, so keep them coming.

And please pray.  For Caleb to not be fearful.  For the doctors to have steady hands.  For Caleb's recovery. For Glenn and I as we try to juggle everything.  Pray for peace.  

I just want to enjoy this weekend with my family and not think about surgery right now.  I'll deal with it in a couple of days.

RIP Burp Cloth

I've spent so much time focusing on everything that is going on with Caleb that I neglected to post about Mr. Benjamin.  If you have been reading this blog for any length of time, you know that Benjamin's "lovey" of choice has always been a burp cloth.  

These pictures were taken almost 2 years ago.  The boy has always loved the burp cloth.  It has been a source of comfort, along with his left thumb of course.  He's also a major thumb-sucker.

We've tried to break Benjamin of his love affair with the burp cloth several times.  You might remember a post entitled: "Burp Cloth Blues".  But the child showed no signs of wanting to surrender his lovey anytime soon.  I had accepted the fact that he would likely take the burp cloth to college one day...and then we went to San Antonio.  When we got home from our trip we could only find one burp cloth (I found the other one the next day) and it was nasty and dirty so I insisted on washing it.  That meant that Benjamin couldn't sleep with it that night but he was so tired from our trip that he just didn't care.  Well, that was over 2 weeks ago and Benjamin has not had his burp cloth since.  He has only asked about it a couple of times but it really hasn't been an issue.  Here are the 2 remaining burp cloths.

You can see that the one on the right was very well loved.  It's probably weird but I put the burp cloths in a baggy to keep.  Just as a keepsake, a way for this momma to remember her baby.  

Benjamin quickly moved on to something else.

"Dotty" the Dalmatian.  He carries this pup everywhere.  Although sometimes he likes to take Bubba's dalmatian...also named "Dotty"

(being a couch potato with Bubba's "Dotty")

This Dalmatian was actually Glenn's when he was a little boy.  How sweet is that?

So the burp cloth has bit the dust and has been retired in recent weeks.  It's bittersweet.  I'm sad to see him growing up so quickly but relieved to know that he won't be taking his burp cloth to college...although I think he might very well still be a thumb-sucker when he is 18 years old.

Caleb is not the only one seeing a surgeon this week.  Benjamin saw a pediatric surgeon yesterday.  We've been pretty sure he has an inguinal hernia for some time and it was confirmed by the surgeon yesterday.  So, Benjamin will be having surgery to repair that.  It is not a pressing matter, so we will likely schedule that sometime in the months to come, maybe this summer.  It is a relatively simple procedure, no hospital stay or anything.

So that is the update on Benjamin.  He's a little stinker and I love him.

MRI

Some of you know that I had a huge fit yesterday afternoon when the neurosurgeon's nurse said that the earliest Caleb could get in for a MRI was 2 weeks away.  I have a child that has lost a lot of function in the last 3 weeks, there is no way I was going to wait 2 more weeks just to get a MRI.  So, I had to turn into "mama bear" again and I insisted the nurse check with the doctor to see if he was okay with Caleb waiting 2 weeks for the MRI.  I had decided that if the neurosurgeon was okay with the wait, then I would be too.  The nurse called about an hour later to inform me that Caleb's MRI would be the next day.  Now, whether the MRI was moved up because the neurosurgeon insisted or because they were just trying to make peace with me...I don't know.  All I know is I got what I wanted.

Caleb, however, was less than thrilled to learn that he was having a MRI.  He was so worried about the noise but I explained to him that he would sound asleep during the whole thing and wouldn't hear a peep.  He handled everything surprisingly well, he didn't seem anxious or worried at all.  Although, he did complain about not being able to eat.

Caleb carefully looking over the "flavors" for the silly gas.  He chose bubble gum.  They gave him a dose of versed first.  That seemed to relax him a bit and made him a bit silly.  It was pretty funny.

Playing the IPOD while he waited to be taken back.

It took about 2 hours before I got to see him again.  He was pretty groggy and loopy when he woke up.

We see the neurosurgeon on Friday morning for the results.  It's funny because I pushed so hard for things to move quickly and now that we are about to find out what is going on...I kinda want things to slow down.  I don't want anything to be wrong, but I know something is.  I want to know...but I don't want to know.  I think my biggest fear is that we will be told that they can't find a reason for the loss of function, so there isn't anything they can do about it.  Or that it will be something far worse than tethered cord.  I'm nervous. I want to stick my head in the sand and just pretend that all is well.  But we can't do that.  So, we will see what Friday brings and we will handle it.

When I said, "My foot is slipping," your love, O LORD, supported me. 

When anxiety was great within me, your consolation brought joy to my soul."

Psalm 94: 18-19




(and for the record, I did make that Chocolate Sheet cake)

One weekend, 2 Birthday parties

 Caleb was invited to 2 birthday parties this past weekend.  Normally I do the shopping for the gift, but this time around Caleb insisted on picking out the presents.  I took him to a craft store and let him lead the way on what he wanted to get.  The first thing he insisted on was flowers because "girls like flowers".  Since it was a craft store, they did not have real flowers so we picked out the giant colorful flowers (blue and pink).  He picked out 2 wooded #6's (both girls were turning 6) and then he painted them and sprinkled them with glitter (pink of course).  He also picked out some crafts, coloring books and the letters "M" and "N", because the girl's names start with those letters.  Overall, I was really impressed with his thoughtfulness in choosing the gifts.  He did a great job and I was so proud of him.

(painting the wooden #6's)

 The first party was for his best girl, Nina.

(you might remember Nina from the Spring Fling)

Nina's birthday party was at a local petting zoo, we've been to several birthday parties here.  Caleb always has so much fun there.

Caleb and Nina

It is no secret the Caleb adores Nina but I quickly learned that the feeling is mutual.  Nina fussed over Caleb several times during the party.  She insisted on sitting by him on the hayride and she just payed a lot of attention to him and he loved every second.

 The following day, Caleb went to a bounce house party.

I get a bit nervous throwing Caleb into a bounce house with a bunch of crazy kids because Caleb doesn't exactly "bounce" the way they do.  But everyone was relatively careful and Caleb survived plenty of bounce house fun without any major injuries.

And on another note, you might remember from my "worried momma" post that I have been quite concerned about Caleb.  He is really struggling to walk and his strength had diminished quite rapidly.  His PT saw him last week after not seeing him for a couple of weeks and she noticed a significant difference in function since the last time she had seen him.  Not to mention the PT at his school, the nurse, and his teacher have all noticed that something is going on.  So, after 3 phone calls to the neurosurgeon and basically having a fit over the phone, I was able to get Caleb in to see the neurosurgeon today.  The doctor agreed that something is not right.  So, the plan is to schedule a full MRI as soon as possible.  He said it could be the shunt, or cysts, or tethered cord.  The only way to get a good look is to do the MRI.  So, that is what we will do.  I'm trying not to get ahead of myself because I don't know what is going on...but I know something isn't right.  We'll see.

I can always tell when I get stressed out because I get the urge to make a dessert.  When we got home from the neurosurgeon I almost made a Chocolate Sheet Cake...but then I decided I shouldn't give in to stress by turning to dessert.  Although Stressed spelled backwards = DESSERTS!

Hmmm...maybe I'll make that cake tomorrow.

Waiting for Butterflies

A couple of weeks ago I bought this:

And yesterday our 5 tiny caterpillars arrived.

The boys are absolutely beside themselves with excitement over these caterpillars-soon to be butterflies.  They insisted that the cup of caterpillars be placed at the table during breakfast this morning.  Basically the caterpillars stay in this container for about a week or so and once they climb up to the lid and form their chrysalis, then we move them into the butterfly house.

I also got this book that illustrates and explains the journey from caterpillar to butterfly.  

Caleb is already getting upset at the thought of letting our future butterflies go.  He says that he will miss them.

7 years ago today...

...Glenn and I were sitting in a room listening to a "genetic counselor" tell us that our baby boy had Spina Bifida and Hydrocephalus.  It's funny how my perspective of that day has changed over the years.  It's not that I can't remember how devastated I was, or how I cried so much that I truly had no tears left, or how I curled up on the couch telling God that there was no way I could do this.  I remember all of that.  I remember the doctor telling us that our baby boy might not survive and if he did, he would have no quality of life.  I remember the doctor informing me that termination was an option but that I had to do it quickly because I was already 18 weeks pregnant.  I remember walking out of the doctor's office and seeing a nurse playing "Solitaire" on her computer.  I remember calling my mom and telling her about her first grandson.  I remember the paralyzing fear I felt.  The absolute despair.  And while I remember all of that and the memory is vivid, I don't dwell on Tuesday, March 22, 2005 very often.  

What I do dwell on is how blessed I am to have Caleb, and how I am a better person because of him.  I dwell on the fact that he is smart, funny, loving, and absolutely the most handsome 6 1/2 year old on the planet.  I dwell on the fact that I have found an amazing online community that has truly blessed me in ways that I can't even begin to express.  These people are family to me.  I dwell on the absolute peace that God has given me over the years.  I dwell on today and try not to get consumed by the worries of tomorrow.  I dwell on the fact that Caleb is so much more like every other 6 year old than he is different.  I dwell on the joy of being his mom.  It truly is a privilege.

I dwell on the silliness that is Caleb.

And I dwell on his killer dance moves.

This kid brings me joy.  I wish I had only a glimpse of this joy when I was pregnant with him.  If I had only known what God had in store, I wouldn't have been so scared.  Spina Bifida isn't easy and it isn't always pretty.  But as my dear friend Jill (Kingsley's mom) says:  "It's not that bad".

Picnic at the playground, New AFO's, and a worried momma

I know that is such a random title for a blog post, but it sums it all up, so I went with it.  Last week Caleb was scheduled to pick up his new AFO's.  The clinic we go to has a really nice accessible playground so I decided to take the boys there for some playtime and a quick picnic before Caleb's appointment.

Benjamin cautiously checking out the shaky bridge.

He determined the bridge was safe to cross so he bolted!

(notice Benjamin's t-shirt, it reads: "I rode the Wonderland Express", I got it for him at Morgan's Wonderland since he enjoyed the train so much)

The boys pretending to be train conductors. 

Caleb working hard to push up the ramp.

He made it!  A victorious grin!

Benjamin standing by the train's smoke stack.  This boy loves trains.

 After our little picnic in the park we headed in to get Caleb's new Camo AFO's.

They came out really cute, I think he was pretty proud of them too.  

So, I covered the "picnic at the playground", and I covered the "new AFO's", now I guess I need to explain the "worried momma" part.  I've noticed in recent weeks that Caleb has been struggling to walk a bit.  His right foot is turning out more and he just seems more clumsy.  He gets fatigue really quickly when walking and complains that his legs are tired even when he hasn't been walking much.  His knees are giving out on him and he seems to be supporting himself more with his arms when he walks instead of letting his legs carry his weight.  He will walk a few feet and then he wants to sit down.  His PT at school noticed it too.  I knew his AFO's were too small and I had a lot of hope that these new AFO's would offer him a bit more support.  Granted he has only had the new AFO's less than a week but I really don't know if they are helping much.  And some days are better than others, some days I think..."well ya know, maybe it's not so bad..." And then other days I know it is bad.  Of course I am thinking it is tethered cord symptoms pushing through.  Tethered Cord.  The thing all of us SB parents know is there but we hope and pray that our child never has any symptoms.  I fear Caleb is having symptoms.  So I went back and viewed videos of Caleb walking from months ago, even a year ago and I definitely see a decrease in function and strength.  And then I started wondering if the 2 UTI's Caleb has had recently could be related to tethered cord??  I hated to make that phone call to the neurosurgeon.  I felt like by making that call I was saying without a doubt that Caleb needs surgery.  It made it feel more real and I don't want it to be real.  But of course there is a process to determining if Caleb is truly showing signs of tethered cord.  So, I called.  It looks like the next step will be a full MRI (not scheduled yet) so that the neurosurgeon can get a good look.  So we will start with that and see where we go from there. 

 One day at a time.

"For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."

Isaiah 41:13

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Matthew 6:34

San Antonio!

We decided to take a little trip to San Antonio over Spring Break.  Brace yourself, I have a ton of pictures to share.  This blog has replaced scrapbooking for me so I feel the need to journal and share everything (so bear with me).

We left Monday morning and headed to Granny and PawPaw's house because they agreed to keep Izzy Bell for us.  They live in the country so Izzy got to experience country living for a few days.  When we picked her up Wednesday night she was dirty, smelly, happy, and very tired.  She had a blast at Granny and PawPaw's.  She was completely in her element out in the country.  We offered to let them keep her but they declined that offer :).

When we took a trip to Austin a couple of years ago we found this little shop/food stop.

Clearly they have beef jerky, but they also have little goodies, snacks, and more importantly...coffee. 

The boys picked out Jelly Belly suckers.  Caleb chose "cotton candy" and Benjamin got "cherry".  They licked on these suckers for about an hour!

The drive took us much longer than we expected due to horrendous traffic but we finally made it to San Antonio Monday evening.  This is when things get a bit interesting.  We thought we were staying in a hotel, a well known chain of hotels to be specific.  We got there only to learn that it was not a hotel...but a MOTEL.  Hear me when I say that we were paying a hotel rate, not a motel rate.  To say that Glenn and I were grumpy is an understatement.  Here is a glimpse of our room:

The hotel motel was right next to the highway so we heard big trucks all night, plus we were close to a train track so that was fun and our neighbor was coughing up a lung bright and early in the morning.  Glenn repeatedly looked out the window to make sure our car was still there.  It was one of those situations where Glenn and I just had to laugh...or we would cry.  

Funny story:  

(Someone at the motel had hung up their wet clothes to dry outside of their door, it was hanging over the railing.)

Caleb:  Why are those clothes hanging there?

Me:  Because this place is a dump honey.

Caleb:  Why do you call it a dump, I love it here.

So, I guess it is all about perspective.  The boys had no issue with the room or the motel.  They loved it.  We thought about changing to a real hotel but we knew that would take time away from fun stuff so Glenn and I decided to just stick it out.  We did make our frustration known to the manager and he decreased our bill quite considerably.

We headed out first thing Tuesday.  First stop, the Alamo.  Caleb has been learning about Texas at school so he was super excited about seeing the Alamo.

There are several of these across the street from the Alamo.  This is where the men would hunker down with their weapons, it offered them a safe place.

 Here are a couple of shots of the Alamo.

They don't allow photography inside.

The area around the Alamo is really pretty and there is a lot to look at.  I really enjoyed it.

The boys and I in front of the Alamo.

Caleb with the Alamo behind him.

After the Alamo, we headed down to the River Walk.  Benjamin was very excited about riding the "slow boat" (that is what he called the boats that take you down the river).

On board the boat.  The boat tour is pretty neat, it lasts about 30 minutes and you have a guide that tells you all about the history of the River Walk and all the buildings that surround it.  It was really pretty.

Caleb looking up at the tall buildings all around us.

After our River Boat tour we decided to eat some lunch.

Benjamin felt the need to play with all the sugar/sweetener packets.  

This was the view from our table.

From there we headed back to the hotel motel to clean up and take a moment to rest.  We decided to take the boys to the Zoo train for a quick ride around the park.  Benjamin is obsessed with trains right now so he was very excited.  But first, Glenn and I treated ourselves to a very rare treat: Starbucks.  We gave the boys a tiny bit of our Fraps.  

They were in heaven!  They discovered that Frappuccinos are quiet tasty.  For the rest of the trip, Caleb continuously asked if we could go to Starbucks again.  We told  him that he could have another Frappuccino the next time we come to San Antonio!

Caleb wanted to ride on the very back of the train.

I think he is excited.

Look at that sweet face.  He was in little boy, train-lovin' heaven.

After the train ride we were done for the day.  Everyone was exhausted so we headed back to our lovely motel for the night.

Wednesday was our last day in San Antonio and we saved the best for last: Morgan's Wonderland!!

Benjamin felt the need to check out the rain gutters.

I have been hearing about and reading about Morgan's Wonderland for about 2 years now and I have been dying to take Caleb.  It just sounded like such a wonderful place, I couldn't wait to check it out.

When you arrive everyone in your party receives one of these tracking bracelets.  If someone in your party wonders off or if you need to find someone you can go to a "Location Station" and scan your bracelet.  It will tell you where everyone in your party is.  How cool is that?  They thought of everything.

(Glenn thinks I'm a dork for taking this photo-but he humored me anyway)

This place is so neat.  EVERYTHING is accessible.  And not just meeting ADA guidelines as accessible, Morgan's Wonderland goes above and beyond.  They made this place so that you could participate in everything without ever having to leave your wheelchair.  Every ride.  Every activity.  Everything.  Absolutely wonderful.

Caleb riding in the back of the Jeep as Benjamin drove.  Caleb rode this ride twice, once in his chair, and the next time he wanted to get out of his chair so he could drive.

Benjamin behind the wheel of the Jeep.

Caleb taking a turn behind the wheel.

There were at least 3, maybe even 4 fully accessible playgrounds.  Caleb said: "Look, it is for WHEELCHAIRS!"  So cute.  And Mr. Benjamin had so much fun climbing and sliding.

One really great thing about our trip was that we were able to plan it so that Caleb's friend Bryce would be there as well.  We met them over at the water tables.  

  "WaterWorks" was a huge hit with both boys.  We practically had to pull them away so that we could do other things.

Benjamin got a little wet.

Without a doubt Benjamin's favorite thing was the train. We rode it 3 times (I'm certain he would have stayed on the train all day).

Benjamin would point at different things on the engine: "smoke stack", "bell", "whistle".  The boy knows his trains.

 What is more fun than riding on a train?

 Walking on the train track!

I love this picture of Caleb.  I love that he chose to position himself next to the boy in the wheelchair!

This was really cool.  They had these huge touch screens that allowed you to paint a custom car.  When you were done with your car, Morgan's Wonderland actually emails you a copy of the custom car you created.  How cool is that?!

Caleb didn't want to get close to the pirate, and Benjamin would only do it if I sat with him.

Riding the carousel with Landry (Bryce's brother).  Caleb just adores Landry. 

Benjamin shooting a giant water gun.  Morgan's also has a place to fish and drive remote control boats.

We had a really great time at Morgan's Wonderland.  I highly recommend it.  It was just so nice to have a place for Caleb that was 100% accessible.  Nothing was off limits to him.  I loved seeing all of the other families there with their kids and seeing the huge smiles on their faces.  Most of the workers there volunteer there time.  Just a really neat place.

We had a really great time in San Antonio but we were all exhausted and ready to head home.  In fact, this is Benjamin about 3 minutes after we left Morgan's and began to head home.