Showing posts with label Hydrocephalus. Show all posts
Showing posts with label Hydrocephalus. Show all posts

Sunday, March 22, 2015

10 years ago...

10 years ago today Glenn and I were sitting in a doctor's office hearing the words "I'm sorry to tell you this but your baby has Spina Bifida and hydrocephalus." More words followed like "bound to" and "mentally retarded" and "termination is an option". I know what a broken heart feels like. I know fear. I know what it's like to cry until there truly aren't any tears left. I know what it's like to fall on my knees and pray like I never have before. Oh, if I had only known then what I know now...I wouldn't have been so scared. If I had only known how amazing, handsome, funny and smart he would be. If I had only known that while SB is part of his life, it isn't his life. If I had only known how SB would change and shape our family into something better. If I had only known the huge SB family I would have and the support and encouragement I would feel. If I had only known that this would not be a journey I would walk alone. Is it easy? No. But you can't appreciate the view until you've climbed the mountain. There is great blessings in the trials. The world is better because Caleb is in it. It's a privilege to be his mom and I'm better because of it. He's pretty awesome ya'll.

Thursday, November 13, 2014

Caleb's fight with anxiety

I've mentioned before that Caleb struggles with anxiety. Really he's always been a somewhat anxious kid but it has gotten worse and worse over the last couple of years. We have done all that we could to try and help him. We pray. We read scriptures. We distract. We pray some more. We push him to do things even when he's nervous. We try to give him control when we can. Sometimes those things work, but more often they don't. They are working less and less these days.

It's been incredibly frustrating for all of us. This sweet boy is riddled with anxiety. He doesn't know why. We don't know why. Most of the time, his nervousness makes absolutely no sense. He knows he's worried about things that he shouldn't be. His hands shake. He cries. He won't eat. He throws up.

There aren't words to describe the battle I see raging within him.


It's truly heartbreaking. He's only 9.

We finally tried medicine. We put Caleb on a low-dose of Zoloft. We tried Zoloft for about 8 weeks and this medicine brought Caleb's anxiety to an entirely new level. It was awful. He couldn't leave the house. Even doing things that he would normally enjoy like wheelchair basketball would cause such a fit of anxiety that he just couldn't get past it. We tried to go to a pumpkin carving party at a friend's house. Caleb wouldn't get out of the car. He threw up. The smallest thing would cause significant anxiety. Even a grandparent coming to the house would send Caleb over the edge. The peak of the Zoloft nightmare was Caleb's anxiety got so bad that he couldn't even go out on Halloween. So ya know that awesome Wild Kratt's Createrra I made....well it never got's collecting dust in the garage. Oh the irony.

He's lost 6 pounds. He was already thin.

So we took him off Zoloft because that stuff was making everything way worse. The child barely smiled for weeks. He face was fallen all the time. He had no peace. He was truly miserable. We've all been miserable. He's been off the Zoloft for over a week now and he has improved some. Still anxious of course, but we are closer to his "normal" anxiety and not in the crazy zone anymore.

We met with a counselor this week. I really like her and I'm optimistic that she will be able to help Caleb over time. We may try a new medicine once he's been off the Zoloft for a bit longer. I want to give him whatever tools he needs to fight this. We will fight this. He will get his life back.

This is really hard for me to share. It's been a really rough time for our family. It's so much easier to share the good, the pretty, the perfect. But I know that we don't struggle alone. I know that our honesty and transparency can benefit others. So I'm shining a light on something painful. As a mom, my heart breaks for Caleb. I hate it. I'm frustrated by it. It's maddening.

But we are pressing forward. We are doing what we can to help him. While I feel like our lives are on hold right now, we are still taking one day at a time.

Some of our favorite verses:

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.” (Phil 4:6) 

“Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” (Deuteronomy 31:6)

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.“ (Matt. 6:34)

Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” (Joshua 1:9)

Wednesday, January 22, 2014

Anxiety with a capital A

Caleb has always been a somewhat anxious kid. There have always been certain things that would trigger anxiety. He has never liked loud noises (a common aversion in kids and adults with SB). He won't watch fireworks and he refuses to go to the movie theater. Loud noises, especially loud unexpected noises, have always been upsetting to Caleb. I'm convinced there is a neurological connection and Caleb will likely never like loud noises. So, there are some things we just don't do because they are so upsetting to Caleb. I'm okay with that. However, I've noticed Caleb's anxiety has increased over the last year or so and more and more things are causing anxiety. Caleb struggles with anxiety almost daily now. Caleb has significant anxiety whenever we go anywhere, even places he has been many, many times.

Example: He has a homeschool p.e. class that he loves every Wednesday. Every Tuesday he starts to get anxious and it just builds and builds until he is crying and very upset. He gets sick to his stomach, sometimes to the point of getting physically sick. Conversation goes something like this:

Caleb: "You know I'm nervous, right?"
Me: "I know."
Caleb: "I don't know why I am so nervous. Why am I nervous all the time?"
Me: "I don't know baby. You love p.e., you don't want to miss it.
Caleb: "I know I like p.e. and I don't want to miss it....but I'm so nervous."
Me: "What are you nervous about?"
Caleb: "I don't know. I'm just so nervous. I'm always nervous"

And this will go on and on and on for hours. He'll be very upset by the time we leave. And you can put any number of activities in place of p.e....nature walk, going to the park, basketball practice, play dates, going to visit family, and church. You can see that these are things that we do on a regular basis, most of them are weekly activities. Really the only places we can go that don't cause anxiety is the store, and maybe the library. That's about it.

The anxiety follows a very predictable pattern. The anxiety usually starts at least the day before the activity. It builds and builds as we get closer to going. He gets more and more upset. We go to the activity and he does fine, he has a great time and he'll be glad he went. And then the cycle starts all over for the next scheduled activity.

Sometimes he'll get fixated on something that is weeks or months away and he'll get anxious about that. It's absolutely maddening.

I think this started last spring sometime, that's when I first started seeing him get nervous when we went places. He started getting nervous about things at school (when he was in public school) which was really unusual for him. The anxiety has gradually gotten worse over the last few months. Now he is anxious almost daily. He's tense. You can hear it in his voice when he talks. I wonder if the boy ever feels relaxed. I think he spends a good bit of his time anxious and nervous. He's 8 years old. 8. He's just a kid.

I am doing what I can to help him. We talk about it. We pray about it. I've given him verses to help him have peace.
I push him to go to the activities even though he is anxious. I do that because I know that he really wants to go and I know that he will have fun. I don't know if I would have it in me to force him to go if he was miserable the entire time. Luckily, he has fun....once he gets there. But the anxiety before is ridiculous. You can just see the inner struggle with him. He wants to have fun, he wants to go to these activities but he is absolutely paralyzed with anxiety. It is so frustrating to watch. It hurts me to see him struggling so much.

I don't know how to help him anymore so I called his neuropsychologist and they referred me to counseling/therapy services. I left a message. Hopefully we can get some help for him. This momma has exhausted all efforts and it's not working. Prayers appreciated.

Can anyone else relate? Advice or thoughts? Encouragement? :)

Thursday, August 18, 2011

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.

Monday, August 15, 2011

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.

Friday, August 12, 2011

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.

Tuesday, August 02, 2011

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)

Saturday, May 28, 2011


Last week Caleb's class had a field trip to the zoo, but due to the horrible tummy bug that had taken over our home, he missed the field trip.  And he was super disappointed.  So, we promised that we would take him to the zoo once we all got to feeling better.  Today was that day.  And it would figure that the day we decide to go to the zoo, Texas has the highest temperature so far this year...100 degrees!!  Good gravy, it was steamy today.
The boys were so excited about going to the zoo.  I don't think the heat bothered them near as much as it bothered Glenn and I.  Although Caleb started getting grumpy after a couple of hours because he was so hot.
I've learned that zoos are not super wheelchair friendly.  Caleb couldn't see much from his chair so Glenn had to pick him up a lot so he could see the exhibits.  Of course, Benjamin couldn't see well either since he is still so little so he had to be picked up quite a bit too.
Not sure what Caleb is looking at here but I just loved the expression on his face.  Plus its a good shot of his spiky hair that he is so proud of!
This picture cracks me up.  Even the animals were hot.  I bet they get sick of thousands of people staring at them every single day.  
I've named these two guys Caleb and Benjamin :)
I wonder if meerkats make good pets??  They are so cute.
I just thought it was funny how this duck was laying.

The zoo currently has a dinosaur exhibit with several life size dinosaurs on display throughout the park.  These dinosaurs actually move a little bit and make sounds.
Benjamin checking out one of the dinosaurs.  Um, he wasn't too sure about it.

Here is what Caleb thought of the life-like dinosaurs...
...clearly not a fan.

The boys had the most fun riding the train.

And then we had a furry little friend join us for lunch.
This squirrel had absolutely no fear.  He (or she) came right up to the table and practically begged for food.  So I gave it a piece of bread from my sandwich.  He (or she) loved it and quickly came back for more.  Who knew that squirrels like homemade whole wheat bread, it must be the bits of pecans I bake into the bread that enticed this squirrel.  He (or she) just kept begging so I kept feeding him (or her).
I think this silly squirrel was my favorite part of the entire day!

My sweet Benjamin was exhausted by the time we were done.  He was literally falling over asleep in the wagon.  Isn't that face just gorgeous? Sweet boy.

All-in-all, a good day at the zoo.

Sunday, May 22, 2011

Last game of the season

Caleb had his last Miracle League baseball game yesterday.  He has really enjoyed playing baseball this season.  We are so thankful for the Miracle League and the fact that this even exists for Caleb and other kids.  It's impossible to watch these kids play baseball with the biggest smiles you have ever seen and not feel a bit emotional.  They are truly enjoying such a simple pleasure and it means the world to them and to their families.
Hangin' in the outfield.  It was a bit toasty yesterday so Caleb managed to find a small bit of shade to park his chair in.
(I love the fun things I can do with photo editing)
Benjamin helped by putting all the balls back into the bucket.
Having some fun in the play area.  Benjamin isn't much for sitting and just watching Bubba play baseball so we have to find other ways to keep him busy.
I seriously can not believe how big this child is.  He seems taller every single day.  I can't believe my precious baby is going to be SIX years old in August.

For every game the team has one "Grand Slam Home Run Hitter" and that child gets to bat last and score a home run for the team.  Caleb got to be the home run hitter yesterday.
Here is a video of him strolling past 3rd and heading to Home plate.

I love how he is taking his sweet time and then suddenly decides to start sprinting as he gets closer to home.
Most of you on Facebook know that we had a bit of a  shunt scare yesterday afternoon.  Caleb had been complaining of headaches for a couple of days and he would just want to lie on the couch when his head was hurting.  So we called the neuro and he said to bring him in.  Turns out everything is fine, thankfully.  Whew!  I really thought Caleb was facing another shunt revision.  With shunts you just never know if a headache is just a headache or if it something to be concerned about.  I just don't take chances when it comes to Caleb's brain and I figure it's better to take him in just to be sure and to have the peace of mind.  Caleb did amazing at the ER too, didn't get upset over the CT scan or shunt series.  He even stayed calm when they took his blood pressure which really surprised me considering how much he HATES to have his blood pressure taken.  Caleb has been poked and prodded, has had so many IV's, tests, scans, hospitalizations, etc...and somehow his biggest fear is the blood pressure cuff!  But he was a trooper the entire time.  So proud of how well he handled everything.

So thank you for all the prayers and encouraging words on FB yesterday.

Saturday, April 23, 2011

Ketchup Blogging

So I'm doing some Ketchup ("Catch-up") Blogging.  Hehe, get it?  Clever right?  I wish I could say that I'm so witty that I thought of this on my own but I actually saw another mom do it on her blog.  I thought it was a cute way to say "Hey, I'm a little behind on my blogging so I'm playing ketchup!"  And this happens to be the ketchup I buy in case you are interested.  Anywho, let's get to the good stuff.

A couple of weeks ago Caleb saw a commercial for an airplane show in our area.  He immediately said that he wanted to go.  This surprised me because he knew that the airplanes would be very loud but he wanted to go anyway (although he made sure we took his headphones with us).
So, last weekend we took the boys to the Air Power Expo which was on a local military reserve base so it was all military planes and helicopters.  The boys were so excited and I kinda was too.
There were dozens and dozens of planes out for the public to see.  This was the first plane we saw when we came in the gate.  It was HUGE.

Caleb had so much fun.  He was all over the place looking at the planes.  There were so many to look at that he didn't know which way to go.
Hey, who is that with Caleb?  Oh wait, that's me!  I actually made it into a picture!  It's a miracle!
Caleb almost had a fit (the good kind) over this car.  He loves NASCAR and was so excited to see one up close. (his excitement is not represented well in this photo-but I promise the boy was excited)
Caleb got to see the cockpit of a plane.  And he got to talk to a couple of pilots.  It was after this picture that Glenn started thinking about joining the Air Force.  I told him that he was too old.
This is "Fat Albert".  It wasn't easy to get pictures of the planes as they were flying...they are kinda fast. 
The Blue Angels.  
Oh my, these planes are so fast that you had no idea they were anywhere near you until they were flying over your head!  They totally sneak up on you.  These were Caleb's favorite.
Watching the Blue Angels.  Notice all the dirt on his hands and arms, from his wheelchair.  It's amazing how dirty those wheels can get and therefore how dirty his hands and arms get as well.
(No, we did not get any compensation from Dasani Bottled water for advertising their product in this picture)

So you are probably wondering "Where is Benjamin"??  He was there, chillin' in the stroller for most of the day.
He seemed to enjoy the air show as well.  He is still talking about the planes and the "smoke" that came out of them.  Both boys (mom and dad too) had a great time at the air show.

Finally, here are a few pictures from Caleb's baseball game this morning.
Father and son.
Love this picture.  
Love that the rock Caleb is sitting on has "Miracle Makers" etched into it.
MeMe came to watch Caleb play today. 
No idea what he is doing here.

And the best picture of the morning...
This is the reaction you get when you try to get Benjamin to sit on a rock for a nice "brotherly" photo.  I guess he wasn't feeling very "brotherly".  And look at Caleb's face, he's thinking "What is wrong with this kid?  Why do mom and dad insist on trying to get him in pictures?"
Hope you enjoyed ketching up with us!  :)

Thursday, March 31, 2011

Spina Bifida has been getting on my nerves again!

Every so often Spina Bifida starts to get on my nerves a bit.  (You might remember a similar post several months ago:  Spina Bifida gets on my nerves!) It's not everyday, not even every week, but I do go through seasons where I find SB to be very annoying.  I am having one of those seasons right now.  It actually started early last week, Tuesday to be exact.  I went to see the doctor who completed Caleb's neuropsych testing to get the results of the test.  It was not lost on me that last Tuesday was March 22, which just happens to be the day (6 years before) that Glenn and I received the news that our baby boy had Spina Bifida.  So, I think I was already expecting bad news from the neuro-psychologist.  I know it's not exactly sunshine and rainbow thoughts but that was my mindset that day.  Anywho, I won't get into all the details of the testing because they did 7 different tests and my mind couldn't even process all the information I was given.  Here are some of the basics:

*Caleb's verbal memory is not great.  Example: when given 4 or 5 different words and then asked to repeat the words he couldn't do it.  Even with repetition.  He could, however, remember pictures.  So definitely a visual learner.  This isn't a bad thing it just makes school a little difficult because the vast majority of instruction is given verbally.
*He gets overwhelmed easily so he will do better with short instructions with just a couple of steps at a time.  It's also important to check for clarification to make sure he understood the instructions.
*If you read him a story and then ask him what the story is about, he can't answer that.  But he can answer specific questions about the story, which shows that he comprehends the story but has trouble summarizing the story on his own.  The doctor said that he will likely do better at multiple choice versus fill in the blank.
*He is a concrete learner.  Has trouble with more abstract thinking.  Example: the other night for homework he had to circle all the squares on the page.  He knows what a square is.  However, there was one square that was turned a little bit so it looked like a diamond.  To him, that was a diamond, not a square.
*He is easily distracted (no surprise there) so he benefits from frequent breaks.

The doctor said that everything they saw in Caleb was very similar to what they see in kids with Spina Bifida.  She wasn't overly concerned, just gave some recommendations for the school so that his needs can be met and he has the best opportunity for success.

Could he have these same issues even if he didn't have Spina Bifida?  Of course, these aren't issues that are only found in kids with SB.  

Do I blame Spina Bifida anyway?  
Yes, I do. 
Yes. I. Do.

When I came home from getting the results, I was beat down.  Even though there aren't any serious issues, it's not that Caleb can't be successful in school.  Caleb just needs some accommodations to help him learn and to help him succeed in school.  I just hated that there was another thing that SB is affecting.  It would just be nice if SB focused on one thing to mess with, but it doesn't, it affects everything.  And it gets on my nerves.  

Is it the end of the world?  
Is it manageable?  
Of course.

Glenn and I have also been faced with the decision of whether or not Caleb should repeat Kindergarten.  He had just turned 5 years old when school started, so he was a VERY young Kindergartener.  I knew that this year could be a "trial run' for him and that repeating might be a good idea just to give him another year to mature and really solidify the basics learned in Kinder.  But when faced with the actual decision, I was torn.  I researched and read everything from "Having your child repeat Kindergarten will turn them into a serial killer" to "It's great to have kids repeat if they need it!  No big deal!"  In the end we have decided that repeating is the best thing for Caleb.  I could place him in first grade but I don't think he is 100% ready. We want next year to feel like a brand new year to him even if he is getting a "redo" for Kindergarten so he will have a new teacher, new classroom, new friends.  I hope we are making the right decision.  I know it shouldn't seem like such a big deal but this has been a tough decision for me and has caused quite a bit of anxiety and worry.  I'm a mom, I worry.  It's what I do.

Anyway, all of this has made me a tad bit annoyed with SB.  I just see how hard Caleb works for everything.  Some days it seems like nothing comes easy for him.

But then we go to Open House at his school and I see this:

A super happy kid showing off all the work he has been doing at school.

His class has 2 ducks in attendance!  I hear about these ducks from Caleb on a daily basis.  The kids absolutely love them.
Caleb has been really interested in the Statue of Liberty lately and I wasn't sure where this new fascination came from...and then I saw this mural in the library.  I got 3 books about the Statue of Liberty at the library and Caleb has had me read them over and over, I even read them to his class yesterday!

So Spina Bifida has been getting on my nerves again, and I'm sure it won't be the last time.  It is what it is.  And we have to climb whatever mountain we come to.  Caleb is a smart kid, these tests do not change that.  They don't define who he is or what he is capable of, anymore than SB defines who he is.  Just like all of us, he has some areas that are harder for him but he is certainly no stranger to hard work.  I'm glad we had the testing done because it gives me a better understanding of how his brain works and how he learns.  This is vital information for a school/teacher to have, it allows us to set the right goals and put the right things in place to help him succeed.
Related Posts Plugin for WordPress, Blogger...