Showing posts with label Shunt. Show all posts
Showing posts with label Shunt. Show all posts

Thursday, October 30, 2014

4th Shuntiversary

Last Friday was a special day in our house. We celebrated Caleb's 4th Shuntiversary! His shunt officially turned four years old on the 24th. A working shunt is a good thing so it is something we celebrate in this house. Plus any opportunity to eat chocolate cake is a good thing.


"I don't need a fork mom."

Sunday, October 27, 2013

3rd Shuntiversary!

I am a few days late in posting this but Caleb's shunt turned 3 years old on Thursday. This is Caleb's second shunt that he got from a revision in 2010. His first shunt lasted just over 5 years. We have a relatively new tradition of celebrating the shunt's "birthday", we call it the Shuntiversary! Anyone familiar with a shunt knows that there are no guarantees with these tricky little things. They can decide to stop working at any time. A shunt can work for 20 years or 20 days. You just never know. So when your child's shunt is working nicely and doing it's very important job, you celebrate!

You can't have a proper celebration without some kind of sweet treat, so we picked up a box of gluten free brownie mix at the store. The GF brownie mix was pretty good...after I slapped on about an inch of yummy homemade chocolate frosting.

Mixing it up! Caleb is wearing his KAFO's so he can stand up at the counter. This is actually really hard work for him.

Benjamin got a turn at mixing too.

We lit 3 candles, sang "Happy Birthday" to the shunt and then ate a brownie.

Here's to another year! Hopefully we'll be celebrating the 4th Shuntiversary next year. 

Wednesday, October 24, 2012

2nd Shuntiversary!

Caleb's shunt turned 2 years old today. I thought it would be fun to make a celebration out of this 2nd "Shuntiversary" by baking a cake. I told Caleb that we were celebrating his shunt's 2nd birthday at dinner. He seemed pretty confused at first but then he started getting really excited about it. He was even more excited once he saw the cake I made.

2 candles for each year the shunt has been doing it's job.
We even sang "Happy Birthday"!

I had to light the candles twice so Benjamin could blow them out too.

Good stuff.

Big Bite!

Celebrating a "shuntiversary" may seem pretty silly but I thought the boys would get a kick out of it. We should celebrate a working shunt. I think we will make this an annual celebration.

While we are talking about shunts. Here is a funny shunt story:

Benjamin: "Where is my shunt?"
Me: "You don't have a shunt baby, only bubba has one."
Benjamin: "Can we go to Target and buy a shunt for me."
Me: "Um, no."


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

Zoo!

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, October 30, 2010

Pumpkin Patch

One of my favorite things to do in October is visit the Pumpkin Patch.  I had planned on us going last weekend but something came up.  So, I had us all ready and out the door this morning because I was going to get my Pumpkin Patch pictures!  I learned that waiting until the last weekend of October means slim pickins' at the patch.  Oh well, we got some good pics anyway.
 
 Benjamin had so much fun this morning.  The kid could barely be still for 2 seconds!  He had more fun picking up handfuls of hay and tossing it into the wind.  He was cracking himself up!

 Me and my first born.

 Benjamin decided to take a 3 second break by having a seat on a pumpkin.

 Caleb decided to have a seat as well!
 
 Look at this kid!  And that big smile.  Hard to believe he had a shunt revision a week ago.  Man, these kids bounce back fast.

 Checking out the pumpkins.

 I just love this picture.  It's just so sweet.

 A family shot.  The lady selling pumpkins was nice and offered to take a picture of all of us.

 Me and my boys!

The boys had so much fun!  It's amazing how a simple trip to the Pumpkin Patch can bring so much joy.  And a lot of great pictures.

Just for fun here are some Pumpkin Patch pictures from years past

2009

2008

2007

2005

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