Clinic day

Well it's that time of the year.  Clinic time.  Clinic had a clinic day today.  He had appointments with orthodontics, cleft/craniofacial, and cardiology.   So here are the updates.   

Cleft and Orthodontics noted Caleb has some lose teeth and is now ready for the bone graft for his gum to prepare him for more dental work.   So the bone graft will be taken from his hip and then placed in his gum in the gap of his gum line.  They want to do this surgery asap due to his adult teeth trying to come in and preparing him for braces in the future.  So they will be calling to schedule this surgery. 

Cardiology.  Oh cardiology.  Once again Caleb dropped his p waves during his visit.   We know this is an issue with Caleb and they have put halter monitors on him before and they wanted to do one more today.  It was checked in the past and they noted the drops were of no concern.  However, today they decided to dot halter again to see if there is any concern.   So hopefully nothing abnormal.  They always scare you and mention that if it is an issue he could need a pacemaker.  So please keep him in your thoughts and prayers.  

I will update as soon as we know more.

God Bless you all!!

God Bless Caleb and Camryn!!

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!!