Painting and Napping

The boys did some painting yesterday. 

 Benjamin mostly just painted on his hand.

I love how careful Caleb is when he paints.  He looks so serious, like he is working on a masterpiece.

These next few pictures are of Benjamin napping yesterday afternoon.  He looked so stinkin' cute that I just had to take some pictures.

Loves to snuggle that burp cloth.

So sweet.

Bryce's Birthday party...and some flashback photos

Today we went to Bryce's 5th birthday party.  It was a lot of fun, Caleb got to see several of his buddies.  Here are a few pics from Bryce's party at the park.

Benjamin loved the bubbles, but he wouldn't let me blow any.  He just wanted to stick the bubble wand in the bottle and then fling bubble juice everywhere.  He must have played with that bubble wand for 15 minutes.  He was a sticky mess by the time he was done.

Getting all 4 of our boys together is virtually impossible and certainly doesn't happen very often...but today I was able to get a couple of pics with all 4 boys together!!  Our boys are all around the same age, give or take a few months and they all have SB.  Seeing all of our boys together reminded me of some play dates we had when our boys were much younger.  So...I just had to post these pics :)

 Ok, are these pictures not cracking you up!?  I love this.  Our boys were less than 2 years old here (this was before we met Nathan).  How stinkin' cute is this?  For some reason Ethan just had to touch Caleb.  So cute.

This is when Caleb and Nathan met for the first time.  Their just kinda checking each other out.  I wonder what they were thinking...?

This one is my favorite.  I think this was the first play date we had that had all 4 of our boys together.  It just doesn't get any cuter than this!   These boys are growing up before our eyes.  It's crazy.  I hope to have pictures of these precious boys all together for many years to come.  They don't realize it yet but they are so lucky to have each other.  And I feel lucky to have their mommies in my life.

18 Months!!

Meet Benjamin.  He is now 18 months old, aka a year and a half.  He sleeps about 11 hours a night and takes 2 naps during the day.  He is a chronic thumb sucker and has to have his burp cloth to fully enjoy the thumb sucking.  He is a great eater, a speed eater in fact.  He eats food like he believes it could sprout legs at any moment and run right off his plate.

He loves to steal his big brother's walker and go sprinting through the house with it.  He is walking on his own but seems to prefer using a walker so that he can reach full speed.

Benjamin suffers from excessive drool production.  Unfortunately there is no cure for this ailment but there is hope that he will eventually grow out of it.

Not only does he steal Caleb's walker, but he also like to drink from Caleb's cup.  Mom and Dad have given up on trying to prevent the spread of germs.  It's a losing battle people.  Benjamin loves Caleb's cup.

He also has some smooth moves for the dance floor ladies.  He does have the occasional temper tantrum that involves the throwing back of the head and rolling around on the floor like a maniac.  He hates baby gates.  He enjoys long walks in the red wagon.  Benjamin is a sweet, cuddly little monkey who absolutely loves his mommy.  He's a toot but we love him to pieces and we can't believe he is already 18 months!

Painting!

Today I took the boys to a fun little place where you get to pick out a ceramic and then paint it.  I took about 50 pictures, here are a few of my favorites.

Caleb picked out a fancy race car to paint.  I think he used about 7 different colors but it was his masterpiece so I just let him do his thing.  

I picked out a small boat for Benjamin to paint.  Purple was his color of choice and the boy used the entire container of paint on his little boat.  He was such a mess, and he refused to wear the smock so he got paint all over him.  Oh well, he had a lot of fun.

"Mom, it's all over my hands. Get it off!"

He had it all over his face by the time we were done and I'm pretty sure he put the paintbrush in his mouth a couple of times.  Yum.

Not sure what they boys are looking at but it is a good shot of Benjamin's messy face.

It can be tempting sometimes to just want to stay home and not mess with loading 2 kids in the car so we can go do something.  I am amazed that people with more than 2 kids ever leave their house!  But it is certainly worth the effort to find simple things to do and get out of the house once in awhile.  The boys really did have a great time and I enjoyed watching all their fun.  If any of you local moms every want to meet up at this place for a little painting play date, let me know.

Thank you for all of your kind words yesterday after my somewhat grumpy blog post.  I received so many sweet messages and encouraging words.  I always get a little uneasy when I share some real honesty on this blog because I never know how it will be received.  It was nice to know that I'm not the only one that has days like that.  I love that there is such a wonderful community of moms out there that know first-hand what the SB world is all about.  Thanks for reminding me that it is ok to have an "It's not fair!" kind of day.  We are entitled to that every once and awhile. I had mine yesterday but today is a new day.  I so appreciate each and every one of you. 

Spina Bifida Sucks

Sorry about my choice of words for the title of this post but that sums up the way I feel about Spina Bifida today.  It would be nice if the only thing that SB affected was mobility but that just isn't the case.  Spina Bifida causes a whole mess of issues.  I received an e-mail last night from a friend of ours (to protect her privacy I'm not going to mention names) who has a son, Caleb's age, with SB.  They just found out that their son has a mass attached to his spinal cord, and it is putting a lot of pressure on his nerves which is leading to hand weakness and pain.  So he is having surgery in the next few weeks to remove the mass.  Well you can imagine what that surgery will involve since it is attached to the spinal cord.  He will likely be in the hospital for a couple of weeks and will have a lengthy recovery after that.  I just started crying as I read her e-mail last night.  My heart absolutely broke.  Glenn read the e-mail and he started crying too.  Now, Glenn doesn't cry very often so when he does it is sincere.  We know this precious boy and we know that Caleb is not immune to an issue like this.  Unfortunately, surgeries are part of Spina Bifida.  We have managed to dodge the surgery bullet so far but we know we will get hit eventually.  I fell asleep last night crying with a ball of tissue in my hand.  My heart hurts for this sweet boy and his family. He has a laugh that is absolutely contagious.  He has a great doctor and I know that he will be in good hands but I just hate that a 5 year old has to go through such a big surgery.

Another friend of ours also has a son (Caleb's age) with SB and he is likely having hip surgery this summer which will require him to be in a cast for several weeks.  Stuff like this happens all the time in the wonderful world of Spina Bifida.  I follow a lot of blogs and I "know" a lot of moms that have a child with SB.  There are some kiddos that have trachs, g-buttons, ventilators, club feet, multiple shunt revisions, seizures, and a whole mess of other things because of SB.  I'm not one to use the phrase "It's not fair", it sounds immature and childish but right now I feel like screaming "IT'S NOT FAIR!"

We all know that SB affects mobility.  That is probably the first thing that people notice about Caleb.  You see the leg braces, the walker, the wheelchair and you know that SB has affected his ability to get around.  What is unseen is the affect that SB has on the bladder and bowels.  This is absolutely maddening.  Because of the nerve damage Caleb, and most kids with SB, can't potty train the way other kids do.  Caleb has no feeling there and has no clue when he needs to pee or have a bm.  I don't feel like explaining it all right now but basically Caleb takes medicine and we catheterize him several times a day to keep his bladder happy and healthy.  For Caleb, medicine and cathing isn't enough to keep him dry so underwear right now is impossible.  So next month Caleb is having a procedure done in an attempt to bulk up his bladder neck so that he doesn't leak.  He will be put to sleep and collagen will be injected into his bladder.  It will likely take 2-3 injections before we see desired results.  It is non-invasive which is good but it may not be as effective as more invasive bladder surgery would be.  The urologist wants to try the least invasive procedures first before doing surgery.  Since Caleb starts kindergarten in the fall I want him in underwear if at all possible.  We also do a variety of things to keep his bowels happy and healthy but I really don't feel like going into all that right now.  It is absolutely maddening and, for me, the most frustrating part of SB.

What's even more mind-boggling is that almost no one has heard of Spina Bifida even though it is the most common occurring birth defect.  How is that possible?  That is way these fundraisers like the Walk-N-Roll for Spina Bifida are so important to me.  Every donation means the world to us because this money helps raise awareness.  Please consider making a donation and help us reach our goal. 

And please pray for our dear friends.  I know you don't know their names but God does.  And pray for their parents too, it is so hard to see your kids go through these things.  I know all of us would gladly switch places with our kids so that they don't have to endure these things.  But we can't and that sucks too.

Sorry this was such a downer but I wanted to share what was on my heart.  Today Spina Bifida sucks, maybe it won't tomorrow.  Thanks for reading.

A Valuable Skill

Caleb has started making his own lunch recently (with supervision).  I decided it was a good idea for him to learn how to make his standard Peanut Butter and Apricot Jelly sandwich.  I did this for 2 reasons: #1 I knew Caleb would get a kick out of it and would most likely really enjoy making his favorite sandwich.  #2 When food is always served to you, it's easy to think that meals just appear magically.  When, in fact, someone (that would be me) is working to make that meal.

Starting with the Peanut Butter.

I know the slice of bread looks funny.  I made that bread with my new bread maker and the middle collapsed a little bit but it still tasted good! And it's 100% whole wheat, so healthy too!!

Caleb absolutely can't control himself and must lick the knife (it's a kid friendly knife so don't worry) several times.  I've learned that letting him make his sandwich is terribly unsanitary because he puts the knife back in the jar after every lick.  Oh well, he's really the only one that eats it anyway.

And now for the apricot jelly.  

Instead of spreading the jelly on the other side of the bread, he just plops it on top of the PB.

So, Caleb now knows how to make a PB&J sandwich.  What's more valuable than knowing how to do that?  I've taught him a very important skill.  My job as a mom is complete :).  

Always working hard

It may be summer vacation but Caleb doesn't get the summer off for Physical Therapy.  He still has PT at least twice a week.  Before Ms. Vickie even got to our house this morning, Caleb seemed tired and I was concerned that he wouldn't have the energy or motivation to work hard for her. Today was one of those days when I wished he didn't have to work so hard.  He is 4 years old and works harder than anyone I know.  He has such a desire to do things on his own.  His favorite thing to say is: "I don't need any help, I can do it by myself."  And today, even though I knew he was tired, he worked so hard for Ms. Vickie.  And with a smile the entire time.

She brought these platforms for him to step up and down from.  It's difficult for him but he did great.  He eventually got tired and said: "I'm tired of this game, let's do something else."  I love it.

Swimming in the garage

It's like 400 degrees in Texas right now...and that's not factoring in the 99% humidity, so it actually feels even hotter.  Our poor air conditioner is struggling to cool the house.  Glenn decided to cool the boys off by letting them swim in the frog pool.  He put it in the garage so that the boiling sun wouldn't fry their sweet baby skin.  Caleb loves the little pool...

...Benjamin, not so much.  The water was pretty chilly and he just wasn't having any fun.  

A brief moment when Benjamin wasn't screaming.  

We are doing another fundraiser for the Spina Bifida Association and we would love to have all the support we can get.  There is a link on the right that you can click on to go to Caleb's donation page.  Please consider making a donation to the "Walk-n-Roll for Spina Bifida".

Caleb and the Wii

We took the boys to see Gammy, Grandpa Al, and Aunt Rachel today.  They have a Wii and Caleb LOVES to play Mario Cart.  He loves to drive his car all over the track and crash it into things.  It takes him about 30 minutes to complete a race but he has so much fun with it.  

What's better than sitting back in a recliner while playing video games?  It's a good thing we don't have a Wii at our house...we would never be able to get Caleb off the thing!

Splash Day = Last Day of School

 Today was "Splash Day" at Caleb's school.  It's the only day of the school year that Caleb gets to go to school in his swim clothes!

Caleb wasn't too interested in being in the swimming pools, he just like playing with the sprinklers.

And Benjamin wanted no part of it.  I don't blame him, the water was pretty chilly.  I love how he is lifting his leg up to keep it out of the cold water.

This was also Caleb's last day of school.  We've been so blessed these past 2 years to have Ms. Kim and Ms. Cheryl as Caleb's teachers.  Next year means kindergarten and a new teacher for Caleb.  Luckily he will be a the same school and he knows his future Kindergarten teacher already.  

So now the summer begins!

Video of Benjamin taking steps

I managed to get some decent video of Benjamin taking a few steps yesterday.  He takes about 5-7 steps at a time before he falls but he is really trying.  He wants to get to his destination so fast that he practically starts running and of course falls because he's not quite ready for that.  He is doing great.  Hope you enjoy the video.

Caleb has really been watching Benjamin while he is learning to walk.  I'll watch Caleb as he is watching Benjamin and I wonder what he is thinking.  Here is his baby brother who is taking steps independently, no braces, no walker or crutches.  Benjamin just walks.  I look at Caleb's face for signs of confusion or even jealousy but Caleb is just grinning ear to ear as he watches his baby brother learn to walk.  He even claps for Benjamin.  Caleb doesn't seem upset by it at all.  In fact, it has motivated him to try even harder.  After watching Benjamin taking steps Caleb really wanted to do it too.  Of course, Caleb can walk just fine with his braces and his walker but taking steps independently is impossible right now.  Caleb wanted me to let go of him so that he could take steps like Benjamin but I knew that if I let go that he would fall.  Caleb kept saying: "Just let go of me mom."  But I can't let go because Caleb can't take steps without some kind of support.  Then I found myself getting sad.  Now, whenever I feel sad about something related to Spina Bifida I ask myself: "Why am I sad?".  Am I sad because I feel some kind of loss or am I sad because Caleb feels sad.  I'm looking at Caleb who is working so hard and trying so hard and he is smiling the whole time.  He's so proud of himself, he's not sad at all.  And if he's not sad then I shouldn't be either.  I made peace with the braces, walker, and wheelchair a long time ago (or rather God gave me peace).  They are part of Caleb, his accessories if you will.  I just want him to have peace as well.  I want him to feel good about himself and what he can do.  That is all I care about.  Caleb is a very bright kid and he is not oblivious to the fact that his body has some limitations.  He knows that he has to wear braces in order to walk, he knows he needs his walker.  And he knows that other kids don't need those things.  But he has never asked me why.  He has never asked any questions at all.  We've told him that he has Spina Bifida and that he had a big boo-boo on his back when he was born, and for right now that seems to be enough for him.