Hello all,
Sorry for the delay in posts. I wanted to get everyone up to speed on what has happened the past couple weeks. Caleb about three weeks ago starting having bouts of acting 'off', screaming in pain, dry heaving, and very tired but then followed by a happy Caleb. We were very puzzled, but the bouts didn't stop, they got worse. At first, it was thought he may be constipated, but Brian and I didn't think this was the cause. So we took him to Children's. After a lot of tests came back normal in the ER they wanted to admit him for observation. The bouts continued to come and go until one day he had an episode that lasted for about 20 hrs. It was horrible and very scary. Because Caleb cannot tell us where the pain is, it is very hard to determine the cause and also so heartbreaking not to be able to help. Caleb was VERY sick. The neurosurgeons then decided, with Brian's urging, to check the shunt in Caleb's brain. The shunt tap looked 'normal' but with more tests coming back normal the Neurosurgeon attending believed she needed to take Caleb to the OR to see if the shunt was working correctly! I don't think Brian and I were so happy to hear that the shunt wasn't working %100, and that this may be the problem. Now, we have to wait and see if any of the weird symptoms reappear and pray Caleb stays infection free. We would appreciate everyone's prayers. Again, Caleb also has a facebook page, Caleb Hlebiczki is a Fighter, where I post ALOT of updates. Caleb spiked a temp this Saturday, but we are praying it was something viral and nothing related to the shunt and that he doesn't have any more fevers.
Caleb returned to school yesterday. He is such an amazing little boy! I have been working on his alphabet with him for a long time and he usually would repeat what I said, but never said it on his own. Yesterday, after he got of the bus he was walking and I heard him singing 'a, b, c, d, e, f, g' I wanted to start crying! My baby was singing the alphabet. He sang to g! I was so proud of him! What a great walk.
When we got home, I was going through all the papers from his school and one was from his teacher. One of the kids in Caleb's class got chicken pox. I immediately started to panic. Caleb cannot get this vaccine and neither can Camryn (to protect Caleb) as it is a 'live' vaccine. Chicken pox is a very scary virus for immunocompromised people. I have sent Dr. Markert an email asking her what I should do as far as school and I am waiting to hear from her!
Again, I apologize for the lengthy delay in updates and I will update more as I know! Please continue to keep him in your prayers!
God Bless you all!!
God Bless Caleb and Camryn!!
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"
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