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?  

No.  

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.

Incentive Calendar

I am sitting in a waiting room while Caleb is getting his neuropsych evaluation.  It's going to be a long day of sitting for me so I thought I would do a quick blog post to help pass the time.

We are trying to get Caleb more comfortable with using his walker in new places.  He uses his walker 100% at home and at church, he also uses it a good bit at school.  He is very capable in his walker but he does lack confidence sometimes in new situations.  He can get a little overwhelmed.  You might remember a few weeks ago when we took him to Walgreens and had him use his walker.  And yes, I looked like a lunatic taking video of my son in Walgreens.  I'm used to people staring.  Anywho, Caleb did great, as expected.

So, Ms. Vickie (Caleb's PT) made a calendar for him.  Whenever he uses his walker out in the community he gets to put a sticker on that day.  After 6 stickers, he gets a prize from her.

Picking out stickers to decorate his calendar.

I think the calendar will prove to be a good motivator for him.  He does amazing in his walker but he just needs to realize that he CAN do it, even in new situations.  I think this will help to boost his confidence and increase his endurance.

He is using his walker now at the doctor's office.  He didn't give me any trouble at all either.  I guess he will be getting his first sticker today!

And for those of you that are interested, here is what the neuropsych evaluation looks at:

Short-term and long-term memory
Ability to learn new skills and solve problems
Attention, concentration, and distractibility
Logical and abstract reasoning functions
Ability to understand and express language
Visual-spatial organization Visual-motor coordination
Planning, synthesizing and organizing abilities

It takes 2-3 weeks to get the results so it will be a little while before I know anything. 

New Look and New Glasses

The blog got a major makeover today.

What do you guys think?

I've been wanting to redesign the blog for awhile but finding the time to sit down and do it doesn't come easily.

I added some tabs including an SB friends tab. Make sure you check it out. I tried to include everyone but I'm certain there are some kiddos I missed so if you want your child on the list, then let me know.

Many of you saw this picture on facebook but I thought I would post it here as well.  Caleb's frames broke several days ago so we had to get him some new glasses.

Seriously, how cute is my kid?

I don't know why but these new frames make him look so much older to me.

He is just gorgeous if I do say so myself.  I'm not biased or anything.

Because of the crazy weather this past week I had to reschedule Caleb's neuropsych test for the first week in March.

Also, Caleb is participating in the annual Spina Bifida Association of North Texas Bowl-A-Thon.  We would love to have your support.  The local SB chapter means a lot to our family so please consider making a donation.  No donation is too small.  You can donate online by clicking on the picture to the right or by clicking here.
You have until March 5th to make a donation.
  

Spring In January

There is an old saying here: "If you don't like the weather in Texas, then wait 5 minutes, because it's gonna change."

We have had spring-like weather all weekend long.  It has been absolutely gorgeous the past couple of days.  We decided to take advantage of the weather now because it is about to get quite chilly here in Texas.

A nice day = a drive in the Jeep

 I have to say that I am very impressed with this Jeep.  Caleb got it Christmas morning and he has spent many hours driving it and the battery is still going strong. 

Look at that grin.  

He's actually trying to run me over.  Little stinker.

I don't know what Benjamin was doing here but I just love this picture.  He's so cute.  He loves being outside.  If you look closely you can see that he has about an 8 inch strand of drool hanging from his chin.

I wish all of you could know Benjamin.  Caleb tends to get a lot of attention on this blog and it's easy for me to forget to highlight Benjamin from time to time.

He is very much a 2 year old.  He has these lovely tantrums where he stomps his feet really fast, we call it his "Riverdance".  When he gets mad he head-buts me (or the wall, or the floor, or whatever is closest to him).  He can be so rotten and super challenging but he is also my little cuddle-bug.  He loves to sit in my lap.  He is constantly asking me to sit on the couch and read him books.  He talks constantly, with new words every day.  He is very much a momma's boy (so is Caleb).  He is my little helper, if I've got the broom then he wants to sweep too.

Yesterday he "helped" me wash the cars.  Mostly he just played in the water.

He was soaking wet by the time he was done.

I hope all of you had a great weekend too!

(Caleb has his neuropsych evaluation on Friday of this week, it's an all day testing.  It will take 2-3 weeks to get the results.  I'll keep you posted)

Spina Bifida gets on my nerves!

I just need to vent for a minute.  Get some things off my chest. I know many of you will appreciate this post because Spina Bifida probably gets on your nerves too.  I just wish SB didn't affect EVERYTHING!  It would be nice if it just picked one thing to mess with and leave everything else alone.  I can handle the leg braces, the walker, and the wheelchair.  Caleb's physical limitations are the least of my concerns.  No big deal.  As far as I'm concerned if SB only affected mobility then it would be easy breezy.  As Caleb has gotten older the mobility issues just don't bother me like they used to.  I feel for all the parents out there with babies and really young kids, I know that their number one question is: "Will my child ever walk?"  Walking seems to be the thing we get stuck on and the thing that matters so much to us.  I know.  I've been there.  I used to wonder and stress over Caleb's lack of mobility.  But the truth is, I am SO happy with Caleb's progress.  I'm tickled that he is able to walk with his AFO's and walker.  I don't mind that he needs his wheelchair to go longer distances.  Will life be a little bit more difficult for him because he can't get around like everyone else?  Yes.  But it's manageable, and he will live independently, he will learn how to navigate and make it work.  I'm not too worried about that.

What I am noticing more and more as Caleb has gotten older is the neurological impact SB has.  We tend to focus on the physical aspect of things because that is what is most obvious.  We see the leg braces, the walker and the wheelchair.  We can't see the neurological issues just by looking at him.  But they are there...and they drive me CRAZY!  What is even more maddening is trying to decipher what is a neurological issue and what is just Caleb's quirks.  

Examples:

Routines:  Caleb is all about routine and doing things the same every time.  In the living room he wants his walker touching the center of the couch before he will get into it.  He wants Veggie Tales playing in the car when we back out of the driveway.  He has actually asked me to start our drive over because he forgot to ask for Veggie Tales before we backed out of the driveway ( I refused ).  He wants to "start over" if things aren't exactly right the first time.  He will erase something over and over and over until it is just right.  I finally cut the eraser off of his pencil because he couldn't get his homework done, he was spending all of his time erasing. It's seems a little OCD (but maybe we are all a little OCD).  

School:  Since starting Kindergarten I have seen some things. He has trouble focusing on his work at school, he doesn't always finish it.  I'm not sure if this is a neurological issue or if it is simply the fact that he is barely 5 years old and he has some maturing to do.  

Sometimes he has trouble writing the letter/number he says he is going to write.  He will say: "I'm going to write an 8" but he will write a 3 instead.  And he will immediately realize he wrote the wrong number.  It's like his hand and his brain aren't working together.

He is super sensitive to loud noises.  Now this is nothing new, and truthfully it has gotten MUCH better as he has gotten older.  I know this sensitivity is due to hydrocephalus, it's not anything that he can help.  He gets so anxious when he thinks he might be going somewhere that will be loud.  His class is taking a field trip soon to see a play and he is already very worried that is is going to be loud.  He is way to young to have such anxiety.

It's mind boggling the things that SB affects.  Caleb's brain is just different, it looks different, and it works different.  Not to say that he isn't intelligent, because he is very bright.  He is a super smart kid.  His brain is just different.  I see this more and more these days.  

He saw his neurosurgeon today and I requested a Neuropsycological evaluation for Caleb.  It looks like he will be having that done at the beginning of next year.  Here is what that testing will show us:

Neuropsychological testing is a procedure that measures and identifies cognitive impairment and functioning in individuals. It provides quantifiable data about the following aspects of cognition:


Short-term and long-term memory
Ability to learn new skills and solve problems
Attention, concentration, and distractibility
Logical and abstract reasoning functions
Ability to understand and express language
Visual-spatial organization Visual-motor coordination
Planning, synthesizing and organizing abilities

All of the areas tested are very common issues in kids with SB.  This test will really help us understand Caleb better and how his brain works.  This will also help us when it comes to his education and how he is functioning at school.  I'm really excited about getting this evaluation done.  I think it will give us invaluable information.

Here is something I discovered this weekend.  Caleb has been congested so I was giving him some OTC expectorant (guaifenesin).  Well yesterday he was acting super weird. He seemed kinda confused, a little slow, couldn't make decisions.  It was really freaking me out.  We were about ready to take him to the ER and then Glenn mentioned the medicine I was giving him.  So, I did a quick search on the internet and found several articles that said "guaifenesin" can affect the central nervous system, and it can have some neurological side effects!!  Since Caleb has neurological issues, it is likely that this simple OTC medicine was having a huge impact on his system.  I stopped the medicine and he was better within hours.  Just an FYI for you SB parents out there.  I don't give Caleb decongestants because I have seen them affect him but I never thought that expectorant would.  Now I know, and he will not get that medicine again!

There, I feel better now.  SB just gets on my nerves people!  And I just wrote about the neurological issues...don't get me started on the bladder and bowels!!  Good grief.

All this being said...I love that little booger to pieces.  He makes my heart smile and I can't imagine this world without him, not even for a second.

Fellow SB parents...What drives you crazy about SB?  Feel free to vent your frustrations!