Yep. He's amazing.

So after bath time Caleb, Camryn, and I went into Caleb's room to wait for daddy to get ready for dinner. While we were waiting we got out the glow color board. Caleb drew a circle so I yelled 'circle'. Then it happened. He started writing a whole bunch of letters waiting for me to guess what letter. It was awesome. He wrote so many letters. I'm so proud of him. It was absolutely amazing.

God Bless you all!!

God Bless Caleb and Camryn!!

Audiology

We are still waiting to hear back from Children's on Caleb's hearing test, hearing specialist, and endocrine appointment.  We also have not heard back in regards to Caleb's endocrine/thyroid labs.  However, Caleb does have an appointment with his Wheeling audilogist (as he has a group in Pittsburgh at Children's too) to get his hearing aid look at.  He has been pushing on his hearing aid and we have ruled out fluid and now that the tubes are in we aren't sure what is going on.  We have noticed that his hearing aid goes through batteries a lot quicker than it used to so we aren't sure what is up. 

Thanks for the prayers for my mom, her surgery went well.  Our friend Gary is going to continue to need lots of prayers, as well as his family.  Thank you. 

God Bless you all!!

God Bless Caleb and Camryn!!

Ouch

Well, Caleb had his blood drawn yesterday.  It was one stick, with A LOT of maneuvering.  OUCH!   He got upset, but was a trooper.  He did great.  Now we wait for the results.

Also, a couple prayers requests.  Our friend Gary was a in a very bad car accident and could really use a lot of prayers as well as his family.  Also, please keep my mom in your prayers as she is having surgery today.

God Bless you all!!

God Bless Caleb and Camryn!!

Blood Draw

Blood draw today for Caleb to check on his thyroid levels. Please pray for one stick.

God Bless you all!!

God Bless Caleb & Camryn!!

He is awesome

We had a fun weekend with family which took our minds of things.  Thanks Mom, Dad, Ben, as and Stacy for being awesome.  We continued to get messages from all of our friends too.  Thank you.  

Just a quick little update.  Camryn was trying to catch a stuffed angry bird tonight so we were passing it back and forth with her.  Then Caleb got up and didn't catch it on the first try but then I counted to three, then threw it, and HE CAUGHT IT.  Not once, but twice.   Great hand eye coordination and a big fete for him.  Way to go Caybay!

God Bless you all!!

God Bless Caleb & Camryn!!

Thank You..Again

Hi all, I just wanted to say thank you..again.  Yesterday and still today have been emotional for me, I find myself tearing up still on occasion.  Which is fine, I have to process it all and then come out swinging, like a friend told me.  I think I cry because I feel so bad for him, that it is another thing that he has to overcome, which he will.  Come hell or high water, Brian, Camryn, and I will help Caleb through this.  We have a wonderful support system of family and friends.  But once again, I consider all of our friends, family.  You all are truly amazing.  I got texts, messages on facebook, etc from you all showing your support.  A couple months back someone made a rude comment to me questioning the genuine friendships of our support system and I got so upset.  I look back now and realize that that individual was just jealous.  How could you not be.  Brian, Caleb, Camryn, and I are surrounded by a huge army, Team Caleb.  I cannot thank you all enough. 

God Bless you all!!

God Bless Caleb and Camryn!!

Surgery and Results

Hello all.   So Caleb had his surgery on New Year's Eve.  His teeth were capped and cleaned and thankfully none needed pulled, however a lot were capped due to him being tube fed when he was really sick.  They also put new tubes in his ears, which removed A LOT of fluid behind the ear drum.  They also, at the last minute, were able to check the puncta in his eyes.  Great news, all puncta were there and complete (meaning they drained through and to his sinuses.  Three needed to be opened and then irrigated and that caused some pretty good bruising and a black eye.  Finally, they did the CT and MRI imaging to check and see if he was a candidate for any hearing implants.

We got the results from the images today.  Some I expected.  Some made me break down into tears.  The doctor started off the conversation saying this is probably the most abnormal CT/MRI he has seen with regards to ears and the anatomy.  That made my heart sink.  He did say that Caleb's left ear is deaf, which I expected, but then it just got upsetting for me.  He explained their are two nerves in the ears that he made note of 1. the hearing nerve and 2. the balance nerve.  Caleb does not have the hearing nerve in his left ear, hence the inability to hear and an aid would not help at all.  Caleb has the hearing nerve in his right ear, but it is small, hence the significant hearing loss in his right ear.  This can be helped with his hearing aid, but we still aren't sure as to what level.  Caleb will be getting a hearing test done in the near future to see what this level is.  Dr. Kitsko then went on to discuss the balance nerve (responsible for your overall balance of your body), or should I say lack there of  :(.  He said Caleb does not have a balance nerve in his left ear at all and if he does have one in his right ear it was so small he couldn't see it.  (chocking up again as I type this).  So that explains why Caleb has the balance issues he does.  His pediatrician had mentioned this in the past, but I always held out hope that his balance problems were due to his delays.  I just feel sick.  I asked him so know what?  Does this mean Caleb will never be able to walk well?  He said he couldn't answer that.  I then asked, What can I do to help him?  He said maybe some physical therapy that focuses on some gait training may help, but he can't guarantee.  .  I started to cry when I was talking to him and then regained my composure to ask him.. so what next.  He said he definitely wanted Caleb to get a hearing test to see as to what level Caleb can hear in his 'good' ear.  Then I asked him if Caleb was even a candidate for an implant after this.  He said he thinks cochlear is not an option.  He said maybe the baha could be a possibility for the left ear but that will depend upon what the audiologist sees with the hearing test.  So plan is to get a hearing test and then see Dr. Kitsko after the test to discuss the hearing test results and if Caleb is a candidate to at least do a trail for the BAHA implant.  As far as the balance, I just am in a whirlwind of emotions right now.   Trying to process it and not get upset at work, but I am. 

I will post more updates when I have them. 

God Bless you all!!

God Bless Caleb and Camryn!!

Not Sure What is Going On

So we have had some sort of virus(s) going through our house.  Caleb woke up Sunday sick and then Camryn woke up Wednesday with a tummy bug.  We had though Caleb shared his germ with his sister, but he then came home yesterday sick from school. So is it the same bug, different bug, a medical issue?  We shall see.  Please keep my kiddos and family in your prayers.  It has been a rough week with illness and some other family issues going on and we could use some thoughts and prayers.  Thanks friends.

God Bless you all!!

God Bless Caleb and Camryn!!

Blood Draw and Ears

Hi all,
So the blood draw went well.  It was one stick with some maneuvering.  They had to wiggle the needle around once they stuck him to get in to his vein.  His veins are so little and tough, from being stuck so many times, that sometimes when they think they have a good vein, it still proves tricky to get in to the vein. But they got in and now we wait for the results. 

We noticed in the last few days Caleb has been pushing on his hearing aid a lot when we think he is trying to hear better.  We also noticed he has more crud coming out of one of his eyes too, again.  So we called his pediatrician and got in there ASAP.  Diagnosis, double ear infection.  We think this may be why he was running a fever too on Saturday. He is such a trooper.  You really, despite Saturday, wouldn't even know he was/is sick.  They say CHARGE kiddos have a high tolerance to pain.  Well the doctor said the ear infection was nasty and this proves his tolerance is high. 

Thanks all for checking in and your emails and text messages.  Thanks for keeping us in your prayers!

God Bless you all!!

God Bless Caleb and Camryn!!

Good Vibes Please :)

Hello all,
Well Caleb had a rough weekend.  He woke up early Saturday morning and wasn't feeling well.  We think he was having some constipation issues, which in turn for kids with shunts can be even more uncomfortable as that can cause headaches and pressure as the fluid from his brain has nowhere to drain.  We were told a while back that some kids with shunts, who get constipated, can experience intercranial pressure and headaches and we are wondering if this is what ocassionally happens to Caleb when he has his GI issues.  Poor kid was pretty miserable. He did wake up Sunday a much happier kid, thank goodness.

I will be taking Caleb after school today to get blood work done to check his levels for his new dose for his Thyroid Disease.  Please send him good vibes that it is a quick one stick test.  Last time, was not and I hope this time goes a lot smoother.  Thanks!

God Bless you all!!

God bless Caleb and Camryn!!