Caleb was born with two rare syndromes, CHARGE and DiGeorge. Caleb is the 6th person in the world born with both syndromes. CHARGE is a multisystem-effecting syndrome which can cause several severe anomolies. DiGeorge prevented Caleb from developing an immune system. He spent over a year straight in the hospital, had multiple surgeries with a possibility of having more in the future. This blog details his heroic journey and story. God Bless Caleb!!
Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"
Wednesday, January 23, 2013
Thyroid levels
God Bless you all!!
God Bless Caleb and Camryn!!
Friday, January 18, 2013
Yep. He's amazing.
God Bless you all!!
God Bless Caleb and Camryn!!
Wednesday, January 16, 2013
Audiology
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!!
Tuesday, January 15, 2013
Ouch
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!!
Monday, January 14, 2013
Blood Draw
God Bless you all!!
God Bless Caleb & Camryn!!
Sunday, January 13, 2013
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!!
Friday, January 11, 2013
Thank You..Again
God Bless you all!!
God Bless Caleb and Camryn!!
Thursday, January 10, 2013
Surgery and Results
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!!