Hearing Specialist

So we met the Hearing Specialist yesterday and I was really impressed.  He answered all of our questions and then some.  So as of now, there are two options when it comes to implants: the BAHA and the Cochlear.  Dr. Kitsko, believes Caleb may not be a candidate for the BAHA because you have to have one good ear and one bad ear or other exceptions.  Caleb has one bad ear and one semi-severe ear.  So that alone may make him not a candidate for the BAHA.  He is wondering if he may be a better candidate for the Cochlear.  With that being said, Caleb has not had a big workup as far as imaging on his ears.  His immune system took precedent for a long time and this is one of the things that still needs some investigating.  So the plan is to do an MRI and a Catscan to get some better images of Caleb's ears.  It is not uncommon for kids with one of the syndromes Caleb has to have abnormal anatomy of the inner ear.  So if he does, you hope that it doesn't effect the chances of him getting a Cochlear Implant if he is a candidate.   But only the images will tell.  So when they schedule his surgery for his teeth, they are going to try to get these images done while he is under anesthesia.  I am hoping everyone cooperates and we can do this under on GA (general anesthesia). 

Caleb also had bloodwork done yesterday to check his thyroid levels to see how his synthroid is helping his thyroid disease.  Poor guy had two rough sticks, but was a trooper so we took him to Louis Hot Dog for lunch.  He was all smiles once the hot dog came to the table.  He is one tough little boy.

I am still waiting to hear about Caleb's immune studies.   As soon as I hear anything I will let you know. 

God Bless you all!!

God Bless Caleb and Camryn!!

Hearing Specialist

Today Caleb has an appointment with the Hearing Specialist from Children's to start the process to see if Caleb is a candidate to get a hearing implant to help him hear.  As far as I know, there are two types the Cochlear and the Baha.  I do not believe Caleb is a candidate for the Cochlear as he does have 5% hearing in the one ear that he can hear out of and with the Cochlear that would destroy what hearing he has to give him an electronic type of hearing.  So today we meet with Dr. Kitsko and see what he has to say.  I have a feeling he will have a full audiology workup and at least an MRI or Catscan in the future as part of the workup, but at least the ball is rolling and we will start to become more knowledgeable with the implant possibility. 

I will update when I know more.

God Bless you all!!

God Bless Caleb and Camryn!!

Thank you again, from the bottom of my heart

As Keith, the gentleman who threw the steak fry along with his wife Jess, posted a thank you letter in our local paper today I couldn't help be overcome with emotions when thinking about the steak fry. 

I have thought about it every day since it occurred, sometimes many time a day.  I cannot begin to express how much that meant to my family.  When I used to live with Caleb in the hospital I would find most of my day filled with silent prayers.  One of which, would be that he would one day get to meet all of you, all of those that reached out to me and my family when we were scared to death for Caleb and what he was facing.  You didn't forget either, you all stood right by and have for six years.  I..cannot thank you enough.  I was asked to say a few words at the steak fry and I wanted to bring up what I prayed for but when I looked out at all of you, I started to cry and the words just didn't come out.  Thank you all, you have lifted Caleb and my family in prayer for six years and I cannot thank you enough.  You have stood right by us, and have taken every step with us.  Thank you.  You have given us courage and strength and looking at all of you at the steak fry I was soooooo overwhelmed.  Thank you FAMILY, you are FAMILY.  I have to admit, I would love to see you all again, I promise I won't cry..okay maybe not!  Thank you family!  God Bless you all!!  God Bless Team Caleb!!

I want to thank Keith and Jessica Bell for throwing the steak fry.  They barely knew us when  they started planning this, and being the amazing and generous people they are, they did this for us.  I am truly humbled by their generosity.  You two are simply amazing.  Thank you Keith and Jess so so much! 

God Bless you all!!

God Bless Caleb and Camryn!!

NO PACEMAKER

PRAISE THE LORD!  Just got a call from the cardiologist and they don't believe Caleb needs a pacemaker at this time for the heart issues.  Thank you Lord.  They want to see him back in two years BUT they want us to of course keep a close eye on him for any dizziness, color -changing (like if her turns puple) or fainting issues that would point to heart issues.  Thank you Lord.  Thank you all for your prayers!

God Bless you all!!

God Bless Caleb and Camryn!!

Prayers Would Be Appreciated

Hi all, I am asking for prayers. 

I called Caleb's cardiologist yesterday to see if the results were in from his heart monitor he wore for 24 hours.  The preliminary read was back and the nurse read it to me on the phone.  She said 'occasional low amplitude of the P waves and difficult to read'.  She then told me the doctor could have been more detailed in her summary and I agreed.  I asked her if she could have the doctor call me as if there is an issue with him dropping P waves this is something you don't sit on.  The nurse agreed and sent the doctor an email while I was on the phone with her.  She did let me know that the doctor is not in on Friday so if she didn't call me back on Thursday night, chances are that we wouldn't hear anything until Monday.  I almost started crying when I was on the phone with her out of fear and scared about another possible surgery on Caleb's heart and worry for my little boy.  I am asking all of you to please pray that the test, although some waves looked low were strong and his heart is working fine and he doesn't need surgery.  Please pray.  Thank you so much.

God Bless you all!!

God Bless Caleb and Camryn!!

Growth Tests are Back

Hi all!  I hope everyone had a great weekend.

Caleb's growth tests have come back.  They did an xray and hormone tests to check his growth levels because kiddos with one of the syndromes he has do have growth problems.  Caleb's bone age, from his x ray showed an age of 7 and he is 6.  So this bone age looked good.  However, his IgF, growth hormone, was on the low side.  With that being said they do not want to diagnose him yet as having a growth problem.  Caleb is a very picky eater and we have always given him 1% milk.  The doctors want us to try to increase Caleb's caloric intake to see if he can gain weight.  If he can, no growth deficiency.  If not, then he may need the daily hormone injections to help him grow.  So we have changed his milk intake from 1% to vitamin D milk and if need be will start supplementing with Ensure or Carnation, but we just don't want the Ensure or Carnation to take away his hunger.  So we will watch his weight closely and see how it goes. 

The immune and heart tests are still pending.

God Bless you all!!

God Bless Caleb and Camryn!!