Thursday, August 04, 2011

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!

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, July 30, 2011

My silly boys

Can I just say how much I enjoy having 2 boys! I'm sure girls are super fun too but all I know is life with boys.  I do admit that I covet all the adorable cute "girly" clothes at the store.  It's probably better that I don't have a girl because I would probably spend way too much money on clothes for her.  Anywho, I have 2 boys, 2 very silly boys.  Here is a glimpse of a typical week with my 2 silly boys.

Benjamin suddenly realized that he can reach the water spout on the fridge.  The boy filled cup after cup after cup of water.
Standing on his tip toes to reach the water spout.
Oops, spilled some on the floor.
Drinking his 15th cup of water.

Minutes later....
...Benjamin attacks the laundry I just pulled out of the dryer.  The child loves "fresh out of the dryer" laundry.  So silly.

Both boys acting silly with hats (and Benjamin is wearing Caleb's glasses...upside down).

I couldn't resist this photo of Benjamin.  It looks like he fell asleep sniffing the wiener dog's hiney.  Made me giggle.

And finally, I may not have a little girl to dress up but look at the stylin' ensemble my 2 1/2 year old came up with.
We just bought Caleb a new Lego backpack and lunch sack.  Benjamin is in LOVE with these 2 items.  He has worn Caleb's backpack around the house most of the day, along with carrying around the lunch bag.  He desperately wanted to sleep with the backpack at nap time but Bubba said no.  Not sure why he has on a Lightning McQueen helmet....

Thursday, July 28, 2011

Worthy of Life

I am a member of this wonderful group on BabyCenter called "Spina Bifida Kids".  This online group is for parents who have a child or are expecting a child with SB.  There are well over 700 members in this group.  It is a wonderful community, full of parents who are more than willing to encourage and support each other.  We share the same journey.  We cry together.  We rejoice together.  We know all the SB lingo.  No explanation needed.  We are family.  At least once a week, maybe twice, a new member joins our group.  Not because she wants to be a part of our group but because her baby has just received the SB diagnoses.  She has just been told that her baby has Spina Bifida.  Immediately fellow members reach out to her with words of encouragement and the truth.  Many times these newcomers to our group have been told some very horrible, terrifying things about their baby.  They have been painted a very grim picture.  They have been lead to believe that their child, this baby that they love, will have no quality of life.  This comment was posted just today:

"We were told that she will not be able to walk.  At best we could hope for her to be able to transfer from bed to chair when she got older; however, due to the lesion being at L1 that was not looking too good either.  We've been told she will more than likely have MR (mental retardation)...."

I was absolutely heartbroken when I read this.  And this is just one of many examples I see on a regular basis.  The parents of this unborn baby girl have basically been told that the most their daughter will achieve is being able to transfer from her bed to a wheelchair.  That's it.  That is all there is to hope for.  Really??  The baby isn't even born yet and these predictions are already being made.  It is ridiculous and absolutely infuriating.  There is no way you can tell what a child is capable of just by looking at a sonogram halfway through a pregnancy!  A doctor has no right to make these statements.  I have no idea if this particular family is considering termination, it wasn't mentioned in the post.  However, based on what they have been told about the quality (or lack thereof) of their baby girl's life I wouldn't be a bit surprised if termination wasn't "offered".  When Glenn and I were told that Caleb had SB, we were told very similar things to what this family has been told.  

We were told that Caleb wouldn't walk.
We were told that he would be "mentally retarded" (doctor's exact words)
And we were offered termination more than once and told that we needed to hurry because I was approaching the cut off date for an abortion.

Another mom joined the BabyCenter group this week.  She has just been told that her baby boy has SB.  She is "considering" termination.  Breaks my heart.  I cry for the babies that are never given a chance.  I cry for the parents that feel like termination is the right choice or the only choice they have.  I cry for the parents that choose termination because some moron doctor has given them false information.  I am always so thankful for the parents that come to the BabyCenter group because we rally around them so quickly.  We share our kids with them.  We show them how wonderful our children are and how worthy they are of a chance at LIFE.  We tell them the TRUTH.  No, SB is not easy. It is not a walk in the park.  It really stinks sometimes.  But our kids are amazing.  They are rock stars!  They touch lives and change lives.  This world would be lacking without them in it.  They are deserving of LIFE. 

Caleb is worthy of LIFE.
And another thing, why is a wheelchair seen as the worst thing imaginable?  Why does a child needing a wheelchair mean that they will have a poor life?  Is our value in our ability to walk!?  Let's remember that all of us, everyone on this planet, is one car accident or one stroke from needing a wheelchair ourselves.

Caleb's worth is not determined by his mobility.  His worth is in the fact that he was created by God.  It doesn't matter how he gets from point A to point B.  I care about Caleb's heart.  His character.  His moral compass.  I want him to know Jesus, to love Jesus, to live his life for Christ.  I care about the eternal, not the temporal.

Caleb is worthy of life.  SB doesn't take away the value of his life. My hope is that this blog, and other blogs like it, will continue to redefine Spina Bifida.  I fully believe that the Spina Bifida Kids group and blogs have saved lives.  I know that there are babies with SB that were given a chance at life because their mom or dad signed into the BabyCenter group or somehow stumbled upon a blog that showed how wonderful these kids are. They are all worthy of life.  

Now if we could just get these medical professionals to visit our blogs so that they could see what Spina Bifida looks like because most of them don't have a clue!

Tuesday, July 26, 2011

Benjamin left unattended for 3.2 seconds....

Yep, in the dryer.
Little stinker.
(Oh, and he also managed to unroll an entire roll of toilet paper in the bathroom in 3.2 seconds)

Sunday, July 24, 2011

Nothing much to report

Truthfully, I don't have much to blog about but it has been a week since my last post so I feel the need to do something here.  Plus I know that all of you are just dying to know what has been going on in our house this past week.  I'm sure all of you are awake at night thinking: "Hmm..I wonder what is going on with those adorable boys Benjamin and Caleb?"  I don't want you to stay awake wondering another night so here ya go.

The biggest change is that the boys are now ROOMIES!
Glenn and I had talked about moving Benjamin into Caleb's room several months ago but we wanted to do it at a time when Caleb wasn't in school.  We knew that this would be an adjustment for both boys so we thought doing the big move would be better suited for summer vacation.  We bought Benjamin a bed just like his bubba's and moved him in last weekend.  The first night was a bit rough.  Benjamin was so wound up with excitement that he could barely contain himself.  He was all over the place, literally bouncing off the walls.  Caleb, however, was very tired and just wanted to go to sleep.  He was not in the mood for Benjamin's shenanigans.  Glenn and I had to keep telling Benjamin to get back in his bed and go to sleep.  Caleb started crying and begging us to please put Benjamin's toddler bed back together so that he could sleep in his own room!  I admit to having a brief moment where I doubted the boys being roomies...maybe it wasn't the best idea after all.  But after about 30 minutes, they were sound asleep.  And really it has been smooth sailing since then.  Benjamin does tend to wake up earlier than Caleb but other than that it is going well.  I turned the nursery/Benjamin's room to a "play room".  I haven't finished getting everything set up the way I want just yet but I'll post pics once I do.  I got a bit choked up when I was taking all the nursery stuff down, pulling down the border, folding up the curtains, packing away the crib sheets for the last time.   I don't have any babies anymore.  I have 2 boys who are growing very fast.  My first born is going to be SIX in about 2 weeks.  I can't take it.  So bittersweet watching my kids grow up.

Caleb's walker got a makeover recently.
I bought these flame decals over at Tadpole Adaptive.  Caleb seems to like them and he has gotten several compliments already.  He only has 4 more weeks left before school starts back up.  Man, this summer has really flown by.  Between physical therapy, horseback riding, and just day to day stuff, I feel like we have been pretty busy.  We did decide to stop the "tackling the playground" mission last week.  Texas is just miserably hot right now and it was getting to be too much for Caleb outside at the playground.  His medication was doubled recently and that has made him even more sensitive to heat (you SB parents know what I am talking about).  So, we are going to tackle the playground when the weather is cooler.  I do think the few weeks of practice helped Caleb realize that he can do it.  I don't think he is able to do it completely on his own but I believe he will get there.  I definitely saw progress.

So that is what has been happenin' here this past week.  Exciting stuff, I know.  

I hope all of you are having a great summer!

Sunday, July 17, 2011

Spina Bifida Family Picnic

Yesterday was the annual Spina Bifida Family Picnic.  We have been the past 2 years (2010, 2009) and it is a lot of fun.  I look forward to it every summer.  It is also the Walk-n-Roll for Spina Bifida fundraiser but since we participated in the Bowl-a-thon this year we decided to not raise money for the Walk-n-roll.  Instead I just donated to a few of our buddies that were participating in the Walk-n-roll.  The last time I checked, the Walk-n-roll yesterday raised almost $42,000 for our local SB chapter!  That is awesome.

Now for some pictures.  I think the boys were the most excited about the sand and being able to build some sandcastles.  They got right to it.
 Benjamin had his own routine going on.
He did this over and over.
 Caleb had the most fun throwing wet globs of sand at his daddy.
And his daddy didn't hesitant to throw wet globs of sand right back at him.  The boy was covered in sand.  It was even in his EARS.
In case you were wondering, sand does not taste good.
Still scooping and dumping.

The boys had so much fun at the lake.  And I had a blast because I got to sit and chat with some fellow SB moms!

Wednesday, July 13, 2011

All about Benjamin

I mentioned a couple of weeks ago that I wanted to make a blog post that was All About Benjamin.  Well here it is!  I know all of you are super excited to learn more about my sweet, ornery, cuddly, thumb-sucking, trouble making, funny, 2 1/2 year old.

Let's cover Benjamin's eating habits first.  He means business when there if food involved.  Don't get in his way!
Nothing goes to waste when it is homemade Mint Chocolate Chip ice cream.  Every. Last. Drop.

Benjamin is the only child I know that will eat sour cream by the handful.  Literally.  No need to dip his flauta in the sour cream when he can just eat the good stuff straight.  I'm convinced he would eat a bowl of sour cream with a spoon just like it was a bowl of ice cream.
 He can devour corn on the cob in a single bite.
He's not embarrassed to get a little messy when he eats. ( I love how he is sportin' a double chin in this pic )
Did you know that garlic bread tastes better after you rub it on your head?

Now on to Benjamin's sleeping habits. Benjamin takes a variety of toys with him to bed.  His choices change from day to day.  Here are a few examples:
If it has wheels or wings then it is likely to end up in his bed at some point.  Sometimes it's a dump truck or front loader.  Sometimes he chooses trains or cars or monster trucks.  And sometimes he chooses a plane or helicopter.  When he goes to bed for a nap or for the night I can hear him quietly playing with his toys for a few minutes before there is silence.

And this is how Benjamin chooses to sleep:
Looks horribly uncomfortable doesn't it?  Yet, this is the position he prefers.  It's like he thinks he is smaller than he is.

When he wakes up from his nap or from a good nights sleep, he needs some quiet time on the couch before he is ready to tackle the day.  This quiet time usually always involves his burp cloth, blanket, and his favorite possession...his thumb.
 Benjamin can be found sucking away at that thumb (his left thumb only) throughout the day.
Loves the thumb.  He used to only suck his thumb when he was holding his burp cloth but has recently decided that thumb sucking is fun and relaxing with or without the burp cloth.

And finally, let's discuss his playtime habits.  Again, if it has wheels or wings then he will love it and play with it endlessly.
Monster trucks are always a favorite.  He even makes cute monster truck sounds when he plays.  This particular monster truck is doing a "wheelie".
 Can't go wrong with a fire truck either.  He is all boy folks.  Oh and notice the drool hanging from the chin.  Yep, Benjamin still suffers from excessive drool production.
Wearing bubba's helmet because one should always practice "safety first" when horseback riding.
Sometimes Benjamin gets out his tools to fix toys that need fixin'.  It was so funny because he was playing with this train and then all of a sudden he took off for his bedroom saying "wrench" and then a few seconds later he returned with said wrench in hand.
 The building blocks are very popular with Benjamin right now.  We made a tunnel for his train to drive through.  After a few minutes he became demolition man and destroyed the tunnel.  All boy.

 He LOVES, LOVES, LOVES being outside.  He loves the playground but is sometimes hesitant to go down the slide without momma, especially the twirly slide.
 This is Benjamin yelling at me from the top of the slide because I won't go down with him anymore.  I want him to go by himself because I know that he will love it.
 Yep, momma was right.  Going down the slide, by himself, with a big smile.
 He went down the slide about 100 times.

Here are some other facts about Benjamin:
*If given the chance he will squeeze and squish every loaf of bread at the store.
*He loves bananas but only when they are still a bit firm, no mushy bananas for this kid.
*He loves apple sauce IN his yogurt.
*He is incredibly ticklish.  All over ticklish.
*He loves to watch "Curious George"
*He HATES when a hair gets in the bathtub.  Seriously, the kid freaks out!  It is hysterical.  I really need to get this on video because his reaction to a strand of hair is AWESOME.
*He talks constantly.  I can't believe how much this boy talks.
*He is my little cuddle bug, he is always willing to have some cuddle time on the couch with his momma.
*He is such a blessing.  Truly can't imagine our little family without him and it is hard to remember a time when he wasn't here.

So there ya go, an All about Benjamin post.  Hope you enjoyed learning more about our little guy. :)

Monday, July 04, 2011

Swimming with Jacob

Caleb had a swimming play date with his buddy Jacob from school the other day.  It's like a million degrees here in Texas so swimming always sounds like a good idea.  Benjamin and Caleb were so excited.

Here's Jacob chillin' in the pool.  Caleb and Jacob have known each other about 3 years now.
I had Caleb covered almost head to toe.  I let him swim in his AFO's so that he would be able to walk around the sides of the pool if he wanted to plus I figured it would keep his feet safe.  I forgot about protecting his knees though and I was worried that he would scratch them all up without knowing it.  Luckily his knees made it through unharmed.
I love these puddle jumper floaties.  It allows Caleb to "swim" without me holding on to him the whole time.  He can kinda do his own thing with these on.
 Boys having fun.
Benjamin had some fun of his own.
So silly.  Love this little booger.

Oh, and just for fun....this is Benjamin's reaction to spilling his cheerios on the ground.
It must be so hard to be 2 years old.  Poor guy was devastated.
All those yummy cheerios gone to waste.  So sad.
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