Caleb was on the news

Good Morning Team Caleb.

Yep you read that right.   Thanks to a friend who reached out to the local news and explained how they needed to do a follow-up on sweet Caleb the news did in fact come to our house yesterday. 

They did a story on Caleb years ago, when we brought him home after his two year straight hospital stay.  So a friend of ours (thanks Kathleen) reached out to the local news again and suggested they should do another story on Caleb.  We were honored that she had reached out to the news like that for him.

So I wanted to share the story.  It was great.  I am so proud of our litle boy. 

http://www.wtrf.com/story/27682664/child-with-rare-disorders-spending-christmas-at-home-with-his-family

Enjoy!!

God Bless you all!!

God Bless Caleb and Camryn!!

Clinic Time

That time of year has come.. to schedule clinic appointments.  With all the docs Caleb sees it takes us two full days to see all his docs in clinic.  We were fortunate to be able to move ENT to a local doctor who is not intimidated by Caleb and his CHARGE syndrome.  Caleb did great and I am so happy we switched to this local doctor.  Caleb does need new tubes so he will have that done in January at our local hospital.  Every procedure he has had prior (50+) have either been at Children's or Duke so this is a new territory for us.  I will post the surgery date when we have it. 

Also, I found an old news story they did on Caleb on CD however, I can't get it to upload to the blog, as soon as I can figure it out I will post it.

We went to Polar Express this past weekend as well.  I will upload those pictures tomorrow.  I was thinking about while driving for
work today and thought I would share.

Have a great evening everyone.

God Bless you all!!

God Bless Caleb and Camryn!!

All Systems are a GO

Well Team Caleb it's official!

The Make-A-Wish trip has been booked! 

We are very excited!!  Details to come soon.  Stay tuned!

God Bless you all!!

God Bless Caleb and Camryn!!

Warm Wishes

Good Morning Team Caleb,

I just wanted to post a small update.  Things are going well (knock on wood-those who know me personally know I literally do knock now). 

I wanted to share a photo with you. 

We wanted to wish you and years a very Merry Christmas!  We chose to stop sending out Christmas cards a couple years ago and donate what money we would spend on cards to the Children's Hospital of Pittsburgh and the Ronald McDonald house.  The Christmas cards are starting to be mailed and I wanted to send ours via the internet :)  So Merry Christmas Team Caleb.  We love you all!

God Bless you all!!

God Bless Caleb and Camryn!!

Happy Monday and Some Kisses to Heaven For Caleb's Guardian Angel

Happy Monday Team Caleb,

We have had a busy couple weeks.  Two kiddos with pneumonia like illness made for some very hectic time and a low-key Thanksgiving.  I hope you all had a fabulous Thanksgiving.

Since Caleb's surgeries in July, we have been trying to let his hair grow.  We have typically kept it short; but the last scar was so big due to them re-opening him so much, that his hair was not growing back well.  Due to those surgeries and the past brain surgeries he has had, he has many scars on his little head which can make cutting his hair difficult due to hos his hair lays now.  So while we were shopping yesterday at our local mall we stopped in at one of the mall salons and got his hair cut.  He did amazing.  He sat still and was so proud of himself.  Here are a couple of hair cut pics. 

 

 

Camryn's hair cut is later this month with my stylist, Jamie, and of course I will post pictures of that too.  She was excited for her upcoming hair cut after seeing her big brother get his hair cut. 

 

Then after that it was off to send our lists off to Santa.  I love the whole believe meter and the donations that come from it for every letter send to Santa. 

 

The kids did awesome.  They are too cute. 

I also just wanted to say today I am sending kisses and love to heaven.  We met an amazing young lady and her mom while we were at Duke with Caleb for his transplant.  The became very close friends of the family.  Samantha Welch fought cancer valiantly.  Shortly after our return to Pittsburgh Children's with Caleb from Duke, Sam passed away on December 1st.  We, and Sam's mom Faith, believe Sam is one of Caleb's guardian angels.  We love you Sam and miss you so much!  We love you to Faith! 

Have a great week Team Caleb. 

God Bless you all!!

God Bless Caleb and Camryn!!



Winter Germs

Good morning Team Caleb.   Well I knew it was coming but this winter had already presented with lots of germs. The newest is the pneumonia bug going around Caleb's school. Fortunately, Brian got him to the doctor very quick yesterday after Caleb woke up sick.  So he's on lots of antibiotics and breathing treatments.  This pneumonia is contagious so we are going we can keep Camryn free from this.  Going and praying he feels better quickly. Poor kiddo had been really tired and fevered.

God Bless you all!!

God Bless Caleb and Camryn!!

Hey all!  I have been such a slacker with this blog lately I am so sorry.  Facebook makes it so easy to put up a quick post and I forget to update the blog for those who aren't on Facebook.  I PROMISE to get much better at updating. It seems like they have made Blogger a bit easier to use so that may help as well.

Caleb had a rough end to his summer.  His shunt failed and he had 5 brain surgeries in two weeks do to ongoing issues with the newer shunts.  We are crossing our fingers that this one is the one.  They even changed the shunt style to hopefully get this one to last longer.  Fingers crossed. 

We have been busy so far this school year.  I am thinking about trying Boy Scouts with Caleb.  I am looking into different packs in the area to see which may be a good 'fit' for him. 

He is doing awesome in school.  Reading and signing a lot more.  He is amazing.  He is struggling a bit with math, but like anything else that has Caleb has come up against, he will persevere. 

I have a lot of pictures and photos to share and will be bombarding you all with my arsenal :)  For now, here is this year's school pic and our family picture this year.  His hair is a bit long for his school picture, but we wanted it to lay over the scar and missing hair from the surgeries this summer. 

Have a great day everyone! 

God Bless you all!!

God Bless Caleb and Camryn!!

Where is the Warm Weather?

I know I know, just because it is spring doesn't mean Old Man Weather agrees. I just feel so bad for Caleb.  He just got over a case of strep and has now come down with a  really nasty cold.  Camryn had it first and she has since shared it with Caleb.  I just hope the warm weather comes soon and gets rid of all the nasty germs going around.  I hope they both are on the mend soon and feel better. 

A cute side note.  We just got some new carpeting in the bedrooms at our house.  Things like this can really set Caleb off, sensory wise.  He was very hesitant to walk on it.  Walked very fast to get to a bed and then climbed up.  He is doing a lot better with it and even gave us a thumbs-up when he saw how I re-arranged his room after getting the new carpet.  PHEW :) .
Well I just wanted to check in.  I hope you all are well Team Caleb.   Have a fantastic weak.
THINK SPRING!

God Bless you all!!

God Bless Caleb and Camryn!!

Verbal Moment

 I love when Caleb has a big 'verbal' moment.  I just caught him singing a whole verse from No more Monkies Jumping on the Bed.   A WHOLE verse.   I tried not to acknowledge as if he saw me looking he would get embarrassed and stop.  I sat and listened and smiled.   Beautiful sounds.  Beautiful.  

God Bless you all!!

God Bless Caleb and Camryn!!   

Eating.

I am sitting here watching Caleb eat and reflecting.  I remember when we finally got him home we would still feed him by his feeding tube and nutrients via his IV.  Every time I would feed him his formula through his tube in his belly or hook him up to his IV, I would pray for the day he would eat by mouth.  I remember sitting with him trying a spoonful of pudding or applesauce and he was so sensory sensitive it hurt him to eat.  To sit and watch him eat..wow.  Way to go Caleb!!  The boys eating dinner.  

God Bless you all!!  

God Bless Caleb and Camryn!!

Update

Caleb had a very rough day but in the last two hours he is doing better.   

Thank goodness. 

  This is a picture of his sister helping me take care of him today.   So happy they are close. 

God Bless you all!!

God Bless Caleb and Camryn!!

Winter Germs.

Unfortunately Caleb has caught what his sister has.   He is pretty sick right now.    Poor kid.  

God Bless you all!!  

God Bless Caleb and Camryn!!  

It doesn't get any better

It doesn't get any better than this.   

God Bless you all!!  

God Bless Caleb and Camryn!! 

Playtime.

Moved the Wii to the playroom for Caleb this morning.  He is so happy!  He promptly gave me the boot out of the room so he could have some fun.   Here is a pic I snuck of him playing.   How cute!   His sister has come down with something during the night.   Hoping Camryn feels better soon (she is catching up on some sleep right now) and that Caleb doesn't get it.   

God Bless you all!!

God Bless Caleb and Camryn!!

Heart awareness Month

February is Heart Awareness month.  One of Caleb's 40 plus surgeries was an open heart surgery.   He had this surgery at Duke while we were waiting for his Thymus Transplant surgery.   Caleb's heart went into heart failure while we were at Duke and they moved up his heart surgery before his transplant.   Reading back on this posts this morning..phew took me back.  What a strong boy and family.   Feel free to read the post below.  Happy Heart Month Caleb!

 Paul Hlebiczki: Surgery Update: The picture at right is one that was taken a couple days before his surgery. Well the surgery took half the time they thought. They did fix ...



God Bless you all!!



God Bless Caleb and Camryn!!

Some sweet photos.

I just wanted to share some sweet photos of the kids.   

They are amazing.  Have a great weekend everyone.  

God Bless you all!!

God Bless Caleb and Camryn!!

Let it Snow!

Good morning Team Caleb.  We are getting some snow here.  I am trying to find some warm shoes and clothes for the kids so they can go out and play.   Hoping it isn't too much sensory wise for Caleb.   We will see.  Trust me I will take tons of pics :). 

I do want to share a pic of Caleb doing his homework earlier this week.  He is doing great.  He has such an amazing team that works with him at his school.   

He is definitely trying to talk in more sentences.  Absolutely amazing.  Sometimes they aren't always clear but in time he will get there.   

I am so proud of him. He is amazing.   

Have a great day everyone.  

Stop back for snow pics.  

God Bless you all!!

God Bless Caleb and Camryn!!

Morning.

Well Caleb got back up around 9 lastnight and seemed okay before I went to bed.   He stayed up with his dad for a bit so I'm hoping he continued to feel better.  He did this a couple weeks ago when my parents were watching him over Christmas break.   Not sure what's going on.  We have heard some kids with VP shunts can get headaches with the change in barometric pressure.  The weather is changing again and was really cold a couple weeks ago when he did this.  Could it be that?  Could it be the abdominal migraines that we have wondered about?   Could it be the run of the mill virus?   We don't know and it is so frustrating to not know and not be able to help your kiddo when they lay on the floor crying trying to go to sleep and you have no idea why.   

I hope today is a better day.  I will update later.

God Bless you all!!

God Bless Caleb and Camryn!!

Poor Guy

Poor Caleb is dealing with something.  He just got very tired and fell asleep while crying.   Caleb never sleeps during the day unless something is up.  Please keep him in your thoughts.  I hate not knowing what's wrong and him not being able to tell me.  I feel helpless.   One of his many sock monkeys is watching over him.  

God Bless you all!!

God Bless Caleb and Camryn!!

Merry Christmas.

Hey all.  Merry Christmas and Happy New Year.  

I want to apologize to all the faithful readers for my sparse updates the last few years.   It was easier to update in Facebook.   But I realize a better diary of sorts is  kept here for Caleb in the future.  I hope all of our faithful Facebooks will follow us over to this blog and comment here like you did on Facebook.   

Again, I am sorry for the few posts but get ready WE ARE BACK.  

So what better way to start back but to give you all a video of some pics from Christmas.   

Enjoy.  

Check back often for updates and please comment. 

http://flipagram.com/f/8xS0qscPfg

God Bless you all!!

God Bless Caleb and Camryn!!