Benjamin's "meet the teacher"!

Caleb isn't the only one starting school, Mr. Benjamin will be starting a preschool program next week.  It's only two days a week but I am so excited for him and for ME!  I will actually have 10 hours a week with no kids!  Whatever will I do with all this time?  The sky is the limit people!

Benjamin got to meet his new teacher tonight and see his new classroom.

How cute!

Seriously, how much fun is Benjamin going to have here!

Of course, he finds the dump truck immediately.  He was having fun within 2 seconds of seeing his new classroom.  I'm so excited about this.  They have a really cute curriculum which includes chapel, P.E., music, art, and of course, all the preschool basics.  He will have snack and lunch there, plus nap time.  I think Benjamin will really like it and I'm really going to like having a few hours to myself during the week. :) 

Facebook Photo Dump

I often post pictures here and there on Facebook.  Just random pictures, usually of the boys.  Pictures that I want to share but don't necessarily want to make a blog post about.  I've decided to do a "facebook photo dump" once or twice a month.  This way I can just lump all these random photos together into one post.  So, for those of you that are "friends" on facebook these pictures will likely look familiar.  And if you aren't my "friend" on facebook then you are in for quite a treat.  :)

This really requires no explanation.  It is what it is.

Caleb found this Mario mustache left over from his Halloween costume last year.

Dr. Benjamin giving Bubba a quick check-up.

The boys' "back to school" backpacks.

Caleb on the second day of school.  Seriously, is that a good lookin' 6 year old or what!?

And that completes this installment of "facebook photo dump".

First Day!

What kind of mom would I be if I didn't post some pictures of Caleb's first day of school??!  This is actually his fourth year at this school since he started going there when he was 3.  He wasn't nervous or anxious a bit.  I like to think of this school year as "Kindergarten...the sequel."  I figure Caleb is likely the smartest kid in the class since he has been through kindergarten once before. :)

Eating a bowl of Shredded Wheat before his first day.  Breakfast IS the most important meal of the day.

He picked out this shirt for his first day.  I think he made a good choice.

Sitting at his table, ready to learn!

The first day is always so hectic but he did great.  He was in a good mood when I picked him up and was even willing to tell me a bit about his day.  I'm excited to see what this school year brings for him.

Sled Hockey!!

We had a rare opportunity to expose Caleb to sled hockey yesterday.  The DFW Sled hockey team was sponsoring a kind of "open house" so that people of all ages could try sled hockey.  I was so excited about Caleb being able to do this. He has never been on ice before and I knew that he would absolutely love it.

There was a team practicing when we first got there.  The boys had fun watching but were anxious to get on the ice themselves.

We saw Cash while we were there.  Caleb and Cash were the youngest of the bunch.  It wasn't easy to find equipment small enough for these little dudes.  It took forever to get Caleb all suited up and strapped into the sled.  He was beginning to think he was never going to make it to the ice.

On the ice for the first time. 

 He did really great considering it was his very first time.  It takes quite a bit of coordination and balance to get moving on these sleds.  He topple over a few times but he was all padded up so no injuries to report.  Glenn was on the ice with him the whole time, and it is a miracle that daddy didn't fall.

Our friend Justin was there too.  He was so great with Caleb, stayed with him the whole time.  And even took Benjamin, who was begging to get on the ice, for a ride.

Benjamin had a blast!  

Taking a break to shovel huge handfuls of cheerios into his face.

Everyone was so nice and patient.  These guys don't have to take the time to do things like this so I really appreciate that they offered this event.  Caleb had so much fun and there were some tears when it was time to clear the ice.  He did not want to leave.  Hopefully he will have another opportunity to do sled hockey again.

Here is a short video of Caleb and Benjamin on the ice.

Meet the Teacher and SB clinic

Tonight was "meet the teacher" night at Caleb's school.  Considering he has been at this school since he was 3 we feel like pros at this point.  Caleb is repeating kindergarten but he does have a new teacher.  We thought it would feel more like a new year to him if he was in a new room, with a new teacher, making new friends.  He was pretty excited about going up to the school tonight.  His new class has a really nice layout so I think it will be easy for him to get around with his walker and/or wheelchair.  

Sitting at his table.  He will have 2 very pretty girls sitting with him at the table so I have a feeling that I will be hearing about them.

Gorgeous boy.  Look at that smile.

You know I had to get a picture of him with his name plate!  I asked him to smile and this was the face I got.  Stinker.

Seeing as how this is his second year of kindergarten, I don't have the nervousness and anxiety I had last year.  I know that he is going to do great because he did great last year.  I am very excited about something new happening at his school this year that I have to share with all of you.  At the end of the last school year I asked the PTA to consider having a representative for the families that have children in special education.  I think when you have a child with special needs you see things from a different perspective and that perspective needs a voice in the school.  So, the PTA has created a new board position, Special Populations Chair, and they have asked me to fill that position.  I am so excited!  I think this will be such a blessing to the school and to the families that have a child in special education.  It's a brand new position on the PTA so we will be starting from scratch.  I have some ideas and I would LOVE to hear from those of you that have school age kids in special education.  Are there things that you wish your child's school offered?  Are there things that you would love to see your school do?  What kind of resources would be valuable to you as a parent of a child in special education?  Think in terms of what the PTA can contribute.  I would love to hear your thoughts if you have something to offer.

And on a totally different note, Caleb has SB clinic this week and I spent a lot of time with the doctor there.  We talked a lot about Caleb's headaches and he mentioned what some of you mentioned, slit ventricle syndrome.  He said it is a possibility but would rather rule out other things first.  He was surprised to see how much Caleb's ditropan dose has gone up this summer (it more than doubled) and he had some concerns about it.  I told him that Caleb is so sensitive to overheating and will often get flushed even inside the house.  It causes his body temp to shoot up to about 100.4 and his skin gets burning hot.  Once he cools off his temp comes down and he is fine.  He talked about how Ditropan also has a neurological impact and can affect behavior and attention as well.  So, he wants us to try "Enablex".  Caleb has taken "Enablex" (once a day pill) for 2 days now and he hasn't gotten overheated once.  It's still early since it is only day 2 but I like what I see so far.  So time will tell.

And of course, we had to "redefine" SB while we were at clinic.

Dear Shunt: An update and a plan

So I've been complaining about Caleb's shunt in recent weeks, you can read my ramblings here and here.  Caleb saw the neurosurgeon today so that we could review all the pieces to this complicated shunt puzzle.  The doctor was very concerned and said that Caleb could be having intermittent shunt failure and that could cause the headaches and his eyes to act all crazy last week.  Thank you!  I'm so relieved that the neurosurgeon agrees with what I have been saying all along.  It's the shunt people!!  Everything in me says that Caleb's shunt is malfunctioning on occasion.  So...what do we do about it?  He reviewed the recent CT scans and said that Caleb's ventricles are collapsed, absolutely no sign of fluid (this is good) but you can't put a shunt into a ventricle with no fluid.  Basically it wouldn't serve any purpose to try and replace Caleb's shunt right now.  Doc wants us to monitor and log Caleb's headaches for the next 6 weeks.  Keep track of every headache, when it happens, and how long it lasts.  ER visits are not necessary unless Caleb is in significant discomfort or the headache won't go away.  Right now Caleb's headaches last about an hour and they go away on their own, with no medicine.   He said we could check Caleb into the hospital for a couple of days to monitor the pressure in his brain but that would require drilling into the skull in order to place the monitor.  I know of a kiddo who had this done recently and it can give valuable information but I don't think we are at this point with Caleb...yet.  Right now I feel like his headaches are minimal and manageable.  They bother him but they don't last long.  So, we will just take the next 6 weeks to log the headaches and see what that shows.  Of course we will address the issue sooner if we start to see significant symptoms or issues.  I feel good about this plan.  I just wanted a doctor to agree with me! I was so frustrated last week because I felt like the ER doctor just ignored my concerns and then another doctor wanted to put him on seizure meds.  I'm feeling much better now that I have a plan in place.

I want to thank all of you who commented on my last blog post.  I know that was a bit of a downer and I was more than slightly grumpy when I wrote it.  But I was being honest in my feelings and there is nothing wrong with that.  To pretend that SB is all unicorns and lollipops would be a lie and I think us parents need to allow ourselves a little tantrum every once and awhile.  But then we pick ourselves up, dust the grumpies off, and move forward.  I woke up the next morning after writing that post to so many kind and encouraging words from you guys and it made me cry all over again.  I appreciate all of you that encouraged me.  I feel so blessed to have such a wonderful support system.

Dear Shunt: An update

You might remember my post last week titled: "Dear Shunt: You are making me crazy!", well this is a small update to that post.  On Sunday morning when Caleb was sitting at the table for breakfast, Glenn noticed that his left eye was acting all kinds of crazy.  It just would not look straight, it kept turning in towards Caleb's nose.  Poor Caleb was doing all he could to keep that eye straight but it just would not do it.  Now his left eye has always turned in a bit, which is one of the reasons he wears glasses.  The glasses keep his eyes straight, without them you can tell that the left eye turns in slightly.  Well Sunday that left eye was more than slightly turning in, even with his glasses on Caleb could not focus.  So I call the on-call eye doc (because this kind of stuff always happens on the weekend) and he agrees that it is possible that such an acute change in vision could indicate a shunt issue. Exactly what I was thinking.  He says to call neuro, so I do.  Neuro says to take him to the ER.  Of course.  So I take him and by the time we get there Caleb's eye is fine and not bothering him at all.  Of course.  Another CT and shunt series later....shunt looks fine.  Doesn't this all sound familiar?

Fast forward to yesterday when Caleb goes to see the eye doc.  The doctor checks to see if the optic nerve is swollen because if it is swollen then there is no doubt that the shunt isn't working.  Optic nerve looks fine.  So you think this would be good news...but it's not really.  The shunt can be failing and the optic nerve still look fine.  We have experienced this before, last fall Caleb saw the eye doc when he was in the middle of shunt failure (we didn't know it at the time) and the optic nerve looked fine then too...Caleb had the inevitable revision 2 days later.  So I don't exactly feel much comfort in knowing that his optic nerve looks fine.  It means nothing.  So the eye doc says "I don't know".  He made a slight change to Caleb's script and he recommended that we start patching the right eye again in order to strengthen the left eye.  One thing he did say that I thought was interesting is the fact that Ditropan is a muscle relaxer, designed to keep the bladder relaxed and that it is possible that it could relax other muscles....including the eyes.  And Caleb's ditropan dose more than doubled at the beginning of the summer so that could be the reason we have seen a change in that left eye.  So we started patching again today.

Patching is not exactly new to Caleb.  We have been doing this off and on since he was just a little guy although it has been about a year since we have had to do it.  Caleb was less than thrilled.  He hated it but thankfully he left it on for the required hour.  I'm sure it is hard to have your good eye completely covered up forcing you to use the eye that is weaker.

So I'm not sure what is going on...and it seems like the doctors aren't sure either.  I've got one doc saying it's likely intermittent shunt malfunction and I've got another doc saying that it can't be intermittent malfunction because that doesn't happen often.  The ER doctor was no help at all and just told me that sometimes kids eyes just act "weird" and it probably wasn't a big deal.  Okay, yeah because it is totally normal for my son's eye to just freak out like that.  Sure, whatever.  I got another doc suggesting a low dose seizure medicine (Caleb does NOT have seizures) in order to prevent the headaches.  Okay, yeah not doing that.  Can you tell I'm getting a bit grumpy?  I'm just frustrated.  Caleb goes back to the neurosurgeon on Monday for a follow-up and to review all these pieces to the puzzle, so we'll see...I don't expect any answers.

When Caleb was younger I used to tell people "Ya know, even if I could, I wouldn't take away Caleb's Spina Bifida."  I truly meant that at the time.  I wouldn't have taken it away...then.  I don't feel that way anymore.  I want to take it away.  I want to take it all away.  I want to take away the AFO's.  I want to take away the walker.  I want to take away the wheelchair.  I want to take away all the medicine and medical supplies.  I want to take away Physical therapy.  I want to take away the hydrocephalus and the shunt.  I want to take away the fear I have every time he gets a headache.  I want to take away CT scans, MRI, urodynamic tests, VCUG's, and the half a dozen doctors.  I know that I'm not being very sunshine and rainbows right now but I'm just not feeling very chipper about the whole SB thing.  I know that this is just a season I am going through right now, and I won't feel this way for long, but it is where I am sitting at this moment.  I'm all for being honest on this blog...the good, the bad, and the ugly.  It's just a bit ugly right now.  It will pass.  Sigh.

SB or not, Caleb is a beautiful SIX year old boy that I love to pieces.  He is as God intended...even when I wish it were different.  So we push forward.  We move on.  We enjoy what He has blessed us with.

Caleb is SIX!!

I know most of you probably saw this on Facebook but I thought I would post it here too.  Just a quick video for your viewing pleasure....

Create your own video slideshow at animoto.com.

I sure do love that kid.

Benjamin left unattended for 2.9 seconds

Yep, that would be a lot of toilet paper in the toilet....notice there is no tp left on the roll.  He made sure he got ALL the tp in the toilet.

Little stinker.

Toothless

Okay, well he's not exactly toothless but Caleb did lose his very first tooth tonight at exactly 7:01 pm!  My big boy lost his first tooth just 2 days before his 6th birthday!

This bottom tooth started getting loose several weeks ago but in the last couple of days it had become really loose.  Tonight when Caleb was eating dinner I could just see the tooth flappin' around.  After dinner, Caleb just couldn't leave it alone, and eventually it was barely hanging on.  So, Glenn just gave the tooth a little tug and it came right out.  I think he looks pretty cute minus one tooth.

6th Birthday Party!

Caleb had his birthday party today (his actual birthday is Tuesday).  We had it at "Pump It Up" again this year.  I just love this place.  It is perfect for birthday parties, especially when your birthday is in August making an outdoor party impossible, unless you want all of your guests to have a heat stroke.  Plus the staff does just about everything for you so it takes the pressure off of me....for the most part.

Here are the invitations I made for the party.

They came out pretty cute.  They weren't terribly hard to make once I figured out the pattern for them.

Caleb had so much fun in all the different bounce houses.  He requires a good bit of help to get up the really big bounce houses, so thankfully daddy and Grandpa Joel were there to make sure he got to do every single bounce house.

Benjamin chose to walk around with Gammy's purse for most of the party.  I managed to get him to go down one slide with me but that was all this kid would do.  He wanted no part of the crazy bounce house fun.  He enjoyed Gammy's purse though.

By some miracle we managed to get a decent group picture.  It's not easy to get 15 kids to sit still, look at a camera, and smile.  So I was very pleased we managed to get this photo at all.

After plenty of bouncing it was time for CAKE and PRESENTS!

I asked Caleb if he wanted a #6 candle OR 6 candles and he said "both!".  So he had a #6 candle with 6 candles around it!  I loved watching him open gifts because with each gift the other kids would get closer and closer to him.  They were all dying to see what he got and they had to get their hands on it too.  It was so cute.  Pretty soon there were so many kids around Caleb that I couldn't even get a picture of him, he was totally surrounded.  And as usual, Caleb made out like a bandit!  Everyone was so generous and gave some really great gifts.  Caleb was so excited about every thing he got.  And Benjamin has enjoyed playing with all of bubba's new toys too (especially the rc monster truck).  All-in-all a great party for our big boy.

One of Caleb's buddies, Nathan, hurt his foot recently so he couldn't come to the party....so we went to see him yesterday instead.  Nathan got Caleb a present for his birthday.

Nathan was so cute, as soon as Caleb opened the game he was ready to play!

What physical therapy looks like

I thought it might be fun to post some pictures of a typical PT session.  Caleb's PT is Ms. Vickie and she comes to our house (love that she comes to the house!) 2 times a week to work with Caleb.  She works so hard to make things fun for Caleb so that he forgets that he is actually working.  He isn't always the most cooperative client but she does a great job of directing him back to the task at hand.  Here are some of the things that she does with Caleb.

 The first thing they do is "bridges".  Caleb lays on his back while Ms.Vickie holds his knees together, then Caleb has to lift up his hips to make a "bridge"  Often Caleb will ask me to do this exercise with him and let me tell you, it is hard! I feel the burn every time I do it.

In an attempt to make "bridges" fun, Caleb picks 5 cars to drive back and forth under his "bridge".

Next is sit-ups.

 

I think we all know how hard sit-ups are so there is no reason for me to say it!  Maybe I should introduce him to Ab Ribber X! (I'm kidding)

Next up is the sit-n-spin. Who knew a childhood toy could be so useful for therapy?

And this is a vintage sit-n-spin, it is from when Ms. Vickie's kids were young.  They don't make sit-n-spins the way they used to.  This is actually a good core workout for Caleb.  He has to spin 10 times in each direction.  She says that it is also good for vestibular sensation since Caleb probably doesn't get much opportunity to spin.

After spinning, it is time for bouncing.

We bought this ball 5 years ago and we still use it all the time for therapy.  Such a great tool to work on core strength and balance.

Ms. Vickie recently add a new exercise to Caleb's routine.  He calls it the "frog".

Today she had him stand at the table while he cut out pictures from a car magazine.

This is actually pretty difficult for him because he isn't able to lean on anything.  He was having to focus on cutting the cars out and standing at the same time.  He did great though, as usual.

Another thing she has introduced is having Caleb walk holding on to the island bar.  She is trying to find things that he can do at home that will mimic some of the skills needed to navigate the playground at school (since it has been way to hot to even step outside).

Tonight when it was time for dinner Caleb walked with his walker to the island ledge and then started walking to the table while holding on to the ledge!  I didn't help him at all, I didn't even stand next to him and I didn't ask him to do it.  He just did it on his own!  It's always encouraging to see him utilizing skills learned in PT.

So, that is a glimpse into Caleb's physical therapy.  He is one hard-working boy!

Dear Shunt, you are making me CrAZy!

Caleb has been having ongoing headaches since May.  Since his inevitable shunt revision last fall, I don't waste time when my baby has a headache.  Especially when he has regular headaches.  At the neurosurgeon's advice we took Caleb to the ER back in May convinced that his shunt was blocked again.  One CT later...and all looked fine with Caleb's shunt.  Headaches continue.  So, one MRI later....and all looked fine with Caleb's shunt.  Headaches continue.  We try elevating his mattress at night to see if that helps the shunt to drain properly as gravity is important for the shunt to drain.  Headaches continue.  We give Caleb allergy medicine everyday to see if the headaches are related to this crazy Texas weather.  Headaches continue.  We go back to the ER....another CT and shunt series later...all looks fine with Caleb's shunt.  That puts us to today.  Caleb is still having headaches.  Not everyday but at least 3-4 times a week.  The headaches are temporary usually lasting 30 minutes to an hour.  They are always in the same location (the ride side of his forehead).  We took Caleb to the neurologist today and he was quite concerned about the headaches and he really thinks it is the shunt causing the headaches.  It could be that he is having intermittent failure that causes the headaches and if that is the case a CT scan or MRI wouldn't show it unless the shunt was failing at that time.  Caleb does have an ophthalmology appointment next week and his neurologist wants to wait and see what the eye doctor says.  Apparently an ophthalmologist can see quite a bit of the nerves in the brain just by looking into the eye.  It is possible that the eye doc can give us a better idea if anything is going on with the shunt.  So we will see what he says and then go from there.  The neurologist feels pretty strongly that the headaches are a shunt issue so it is possible that there is a revision in his near future but we aren't certain.  Sigh.  I am so frustrated with this whole thing.  I almost wish Caleb was showing the "text book" signs of shunt malfunction, vomiting and lethargic, so that I would know for certain that it is, in fact, the pesky shunt.  I'm frustrated because I've been worried about these headaches since May and I feel like we still don't have any answers.  I'm frustrated because school starts in 3 weeks and I don't want my baby to have a revision right before the start of the school year.  I'm frustrated because shunts don't have some kind of warning bell and red flashing light that alerts us when they aren't doing their job. Or maybe they could design a shunt that says:  "Hey guys, I'm not working!"  I love the shunt and the inventor of the shunt because it is absolutely genius and without it I would not have Caleb.  Hydrocephalus would have ended his life early on.  So while I love the shunt and I'm so thankful that such a thing exists...I hate it because I never know when a headache is just a headache or when it is something more.  I can't take Caleb to the ER every single time he has a headache.  Sigh again.  So now we wait.  We wait to the see what the eye doc says and then go from there.  I have learned one thing for sure since Caleb was born...I am not in control.  That is a tough pill for me to swallow.  I have no control over the shunt or Spina Bifida or anything really.  God is.  God made Caleb.  He designed his body to be just the way it was intended to be.  And I can worry and I can stress out but in the end it is out of my hands.  So I will just lay it at His feet because He is always on His throne.  And I will pray.  I will pray that we can get to the bottom of these headaches and find a way to help my boy feel better.  As always, I would appreciate your prayers as well. 

"Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed for his compassions never fail."  Lamentations 3:21-22

Praise God for that.

Fortunately we have some fun things in the next few days to keep us occupied, Caleb's 6th birthday party is Saturday and his birthday is a week from today!  My baby is going to be SIX!  (sigh again...and sniff, sniff)