Sunday, September 25, 2011

Baseball, Playground, and Puppy!!

Caleb had his first Miracle League baseball game of the fall season yesterday.  His buddy Jacob is playing too, although on a different team.  Caleb was so excited to be playing baseball again.  I'm still not convinced that he has any clue what baseball is about but he loves to hit the ball and run the bases.  And I guess that is all you really need to know.
Caleb and Jacob

Caleb had to warm up that arm before the game, so he and daddy threw the ball back and forth for a few minutes.
Love this picture

Caleb was one of the first kids to bat.
Of course, he knocked this ball right out of the park and then made a quick run to 1st base!

Waiting patiently at 2nd base.
And running to home plate!

While bubba was busy playing ball, Benjamin had to find some fun of his own.
I'm pretty sure he shouldn't be touching this huge piece of construction machinery...but oh well.  He kept asking me for the keys so he could turn it on!

After the game we took the boys to the all-accessible playground by the baseball fields.  


All-in-all, a good fun-filled Saturday morning.
And, as if baseball and the park wasn't enough fun for one day, we got this little lady yesterday too....
So precious right?  We aren't entirely sure what kind of dog she is, hopefully a vet will be able to give us a better idea.  All we know is she is cute, sweet, pees all the time, and the boys LOVE her.  They. Love. Her.  Her name is Izzy.
Puppies are kinda like newborn babies in some ways.  Izzy doesn't sleep through the night.  She is really alert and playful for about 15 minutes at a time and then she needs a nap.  Did I mention she pees a lot?  I admit to having a moment of panic after Glenn brought her home.  A moment where I asked myself:  "What have we done?  Why in the world did we just get a PUPPY!?"  But she's so cute that it is hard not to love her and the boys are totally smitten with Izzy.  They will not/can not leave her alone.  Poor Izzy can't even get a decent nap in because the boys can't keep their hands off of her.  Truly, having a puppy hasn't been that stressful, it's the Kids + Puppy = STRESS.  We are constantly saying things like:
"Caleb get your finger off of her eye."
"Benjamin don't pick her up by her neck."
"Caleb leave her alone so she can eat please."
"Benjamin, she doesn't need your monster truck to play with."
I know that once we have had Izzy awhile the novelty will wear off and the boys will relax a bit...I hope.
He Loves Her.
Sweet baby girl fell asleep in my arms. Ahhh.

Tuesday, September 20, 2011

Recent Happenings

So it feels like forever since I have posted for some reason.  It's only been about a week but it seems like ages ago.  I start to feel a bit antsy when I haven't blogged, like I'm forgetting something major that I just have to share.  I don't have any one specific thing to write about so I'll just share a few of the happenings around here lately.

Glenn and I went to talk to Caleb's kindergarten class about Spina Bifida last week.  His classmates had asked him several times why he needed a wheelchair and a walker.  His response was always: "I have Spina Bifida".  Well, 99.9% of 5-6 year old's have NO clue what that is (I guess most adults don't know what it is either).  Anyway, we thought it would be a good opportunity to talk to his class for a bit.  I was actually nervous about it for some reason.  Why I was anxious about talking to a bunch of little kids is beyond me but I was.  I was worried that Caleb wouldn't feel comfortable with us there. I was worried that he would be embarrassed or something like that.  We talked to him beforehand to make sure he was okay with us coming to his class.  He said he was, so, we went.  We started by reading this book to the class:
"Right under my nose" is a really cute book about a young boy with SB.  It was the perfect way to introduce Caleb's class to SB.  After we read the book we let the kids ask questions.  We passed around one of Caleb's AFO's and we let the kids sit in his wheelchair.  It went really well.  The class was so cute and Caleb seemed so comfortable.  He really wanted the kids to sit in his wheelchair.  I was worried that the kids would ask really tough questions but they didn't.  I learned something that day.  I learned that these kids, at least at this young age, don't care about the wheelchair, or the walker, or the braces.  They are curious about it all but mostly they just see Caleb.  They see their friend.  Their classmate.  I watched Caleb with his friends at lunch and he just seems so confident this year.  He is much more social than he was last year.  I don't know what it is but he is a different kid this year.  It really warmed my heart.  Last year Caleb had an aide to help him, but this year he is on his own.  I'll admit to being a bit concerned about how he would do but I recognized that he can't have an aide forever.  I almost think he is doing better without the extra help this year.  He is so independent and maybe that is leading to this boost in confidence.  He is really rising to the occasion.  He's doing great.

On another note, Caleb is still having headaches, even with the Ditropan going directly into the bladder.  So disappointed.  I was really wanting to blame the medicine for the headaches but I can't.  He has had 7 headaches so far in September.  And those are just the headaches he has told me about, I'm convinced that he tries to hide them from me.  He told me the other day: "I don't want to tell you about my head hurting because you might get worried."  Sigh.  He's right, I do get worried every time his head hurts.  They are still brief, usually less than an hour.  Sometimes we treat with pain reliever and sometimes we don't. I'm keeping track of each headache and I'm going to report back to neuro this week about what we have seen.

Benjamin is enjoying, tolerating, going to preschool.  He does pretty well when I drop him off, although last week he had a huge fit when I took him to school. He threw himself to the floor and grabbed my ankle!!  Good grief.  I felt like the worst mom on the planet.  But the teacher insisted that he was fine before I made it to the parking lot.  I do think he is having fun while he is there but he is mad at me for leaving him.  He is used to having his mommy every single day. All day.  So this is a bit of a change for him even though it is only 2 days a week.

I mentioned a few weeks ago that I was asked to be a part of the PTA board as a representative for the kids that are in special education.  I was so excited that the PTA was addressing this need and that they asked me to head it up.  But then, I kinda started to panic.  I began to think: "What have I gotten myself into!?"  This is a brand new board position so I'm building from the ground up.  I don't know what I'm doing!!  Why didn't I just keep my mouth shut?  I had confidence in my idea but I did not have confidence in my ability to see the idea through.  And then I read this:

"So do not throw away your confidence; it will be richly rewarded.  You need to persevere so that when you have done the will of God, you will receive what he has promised." Hebrews 10:35-36
(this is actually my next memory verse for those of you that follow my other blog)

So, I took a deep breath and got to work.  I met with some wonderful ladies from another school district that has an amazing program.  These ladies devoted years of their life to get the SAGE (Special And Gifted Education) program district wide.  And they have impacted thousands and thousands of lives.  All because a small group of parents wanted to advocate for their children.  I was in absolute awe.  So, I decided to start exactly where these ladies started, with a small group of parents.  Hopefully, I will be able to get some fellow parents at Caleb's school to help me build the foundation for what I think will be such a blessing to the school and potentially the entire district. 
I'm excited.

So that's the happenings around here!

Monday, September 12, 2011

Water Park Fun!

Every September Glenn's work gets the local water park all to itself.  So Saturday we took the boys to have some water park fun.
The boys immediately went to the water fountain path.

The water fountains were, by far, Benjamin's favorite thing at the water park.  He spent the majority of the time playing with and in the water fountains.

Benjamin would cover the fountains with his foot...and when he would move his foot...
...he would get squirted directly in his eye!  He must have done this a dozen times.

The weather on Saturday was really nice.  However, Texas had cooler temps during the week and that seems to have affected the water temp at the water park.  The water was FREEZING.  Seriously, frigid cold.  I could barely get in to my knees but Caleb....
 got right in!  I guess icy cold water doesn't bother this kid.
Benjamin was a bit more cautious with the chilly water.
We took the boys over to the "kiddie section" and Benjamin was all ready to have some major fun.  But then the giant bucket of icy cold water dumped over from 20 feet in the air and Benjamin sprinted out of the kiddie area....and refused to go back.
I love this picture.
Oh, and while we were at the water park, someone lost another tooth (with daddy's help).
All-in-all a good day at the water park. :)

Friday, September 09, 2011

Watching trains at the park

I took Benjamin to the park this morning for a little bit of outdoor fun.  The park I took him to has a train track right next to it and trains come through there all the time.  Benjamin was so excited about the possibility of seeing a train.  He played for quite a bit on the playground  and right as we were about to leave...we heard it.
The sound of a train coming in the distance.
So we began to wait...patiently.
But the train was taking too long so we decided to play with some dirt.
A nice fist full of earth.
Returning the dirt to it's home.
 I wish these pictures played sound because he was making the cutest little digger and construction truck noises the entire time.  So stinkin' adorable.

Hey where is that train anyway?
The train is getting closer now.  
There's that train!!
Benjamin smiled the whole time the train was going by.  He loved it.
And I love this face.
(even with the ridiculous amount of drool that constantly pours from his mouth)

But I don't love this face.
He was less than thrilled when it was time to head home for lunch.
Ah, the joys of life with a 2 1/2 year old :)

Thursday, September 08, 2011

What's new with us

I thought I would do a quick post about what is going on with us lately.  

Benjamin started preschool this week, he goes twice a week.  He did so well.  I knew he would have fun but I was a bit worried about how he would handle the whole nap time thing.  He is so used to his bed and his routine that I wasn't sure if he would sleep on a mat in room with other kiddos.  But he did.  He just walks right into his classroom and starts playing.  He seems to really enjoy it.  Which makes this mommy happy...plus I have enjoyed having a few extra hours in the week to myself.

Caleb got some tripod canes this week.  I ordered them for him because he just doesn't like his forearm crutches.  His arms have always been really sensitive for some reason and he is very uncomfortable with the arm cuff on the crutches.  Plus forearm crutches require quite a bit of balance so they were a real challenge for him.  So I thought the tripod canes might work better because they have a much wider base of support and he is able to just hold the handles.
(working with the canes at physical therapy today)

Caleb really seems to like the canes.  He is able to stand up holding onto them without losing his balance, something he was unable to do with the forearm crutches.  We are working with him on how to take steps moving one cane at a time.  This is going to take some practice but I really think he is going to be able to use these canes.  They might not replace his need for his walker anytime soon but that's okay.  I'm not trying to replace his walker, I just want to give him as many ways to be mobile as possible.

Caleb is in his third week of school and he is doing really well.  I was worried that repeating Kindergarten would be hard on him but he has made new friends already and is doing great.  I ate lunch with him yesterday and I noticed how confident he seemed and how he has grown socially.  I enjoyed watching him sit next to a boy in his class who put his arm around Caleb and complimented his spiky hair!  The kids in his class have been very curious about why he uses a wheelchair/walker and wears braces.  Glenn and I are going to his class next week to talk to them about Spina Bifida (in a very sweet and simple fashion considering they are 5 and 6 year olds).  Hopefully that will help the kids get to know Caleb better and have a better understanding.

And you might remember all my rants and ramblings this summer about Caleb having headaches and we just weren't sure what was going on but we came up with a plan anyway.  I mentioned at the end of summer how we were trying a new bladder medicine that I had such high hopes for...well it didn't work.  Although while he was taking the medicine he didn't have a single headache.  Not one.  So that started to make me think that just maybe the increase in Ditropan was causing the headaches and the vision issues.  When the Enablex wasn't working I had to put him back on the oral Ditropan and within 2 days he was having headaches again and his eye was acting all crazy.  Hmmmm...maybe it's not the shunt after all.  So, I called the doctor and asked if there was anything else we could try for Caleb's bladder that wasn't oral ditropan.  So for the past week we have been putting the Ditropan directly into the bladder.  This way it bypasses the central nervous system and goes straight to the bladder.  It took some tweaking on our end but it is working.  It is doing what I want it to do and he hasn't overheated once.  The jury is still out on the headaches, I'm not convinced that the Ditropan was causing them but I am cautiously watching to see if these headaches continue even with the Ditropan going directly into the bladder.  And I know a couple of you (Colleen and Gretchen) were concerned about Caleb's sudden increase in Ditropan and if we were doing that because of a change in bladder function....indicating a tethered cord.  That isn't the case, the increase was made because he had been on the same dose for so long and to get the results that I wanted we had to try increasing the dose (although in hindsight I do think the dose was increased too much at one time).

And finally, October is SB awareness month and last year I had the bright idea to feature a new SB kiddo each day of the month.  I called it "Faces of Spina Bifida".  It was wildly popular in the SB world and by the end of the month I had featured 69 beautiful kids.  It was a lot of work and took a bit of time but I loved it!  I had so much fun learning about all of these wonderful kids.  I am planning on doing "Faces of Spina Bifida" again this year starting October 1st.  If I featured your kid last year, I will do it again this year unless you tell me not to.  And if your child was not featured last year and you want them to be this year then you have to let me know.  Leave me a comment with your e-mail and blog info (I will keep your comment private so that your e-mail stays secure) and I will get in touch with you.  Or send me a message on facebook.  I would like to feature some older kids, teenagers, and adults with SB this year if at all possible so please contact me.  I know October is still a few weeks away but I have a strong feeling that I am going to have A LOT of "faces" to feature so I want to try and get organized.

I'm sure none of you are still reading this right now because my "quick" post has turned in to a novel and you probably lost interest sometime after the tripod canes.  If you are still reading this then you are my favorite person in the whole world :).

Monday, September 05, 2011

Playing at the park

Texas was suddenly hit with the most gorgeous weather this weekend.  We have barely endured the hottest, most miserable summer in the history of the universe, so to be able to open my windows this morning and feel a  COOL breeze blow through my house was nothing short of amazing.  We could not, and would not let this weather go to waste so we took the boys to the park.
Of course we had to take Caleb's hand cycle too!  He has been begging to ride it all summer but it was truly just too hot, so it has been a few weeks since he has enjoyed his bike.  Thankfully, Glenn strapped on his running shoes and jogged, ran, and sprinted around the park with Caleb.  It was fun seeing everyone's reaction to Caleb's bike.  He definitely got a few stares (which is typical) but I think people were staring because this cycle is just so COOL.  His was THE coolest bike at the playground for sure!

While Daddy and Bubba were off cycling...Benjamin and I hit the playground!
He went down the slide about 1200 times (that is not an exaggeration).

Did a bit of swinging.

Stopped for a quick snack because all of this playing is hard work.

And then Bubba joined us on the playground.

We are very blessed to have an all-accessible playground in our area.  Caleb is able to get to most every part of the playground equipment with his walker or wheelchair.  


The boys had a great time at the park this morning.
I hope all of you enjoyed your weekend as well.

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