Thursday, May 19, 2011

downs, downs...heading back UP.

That devil is always prowling around trying to steal, kill, and destroy! It is so true! And he comes in many forms when you least expect it! Fighting him off is a constant and tiring battle. But all things are possible WITH God! So here I am! I'm in charge of my own actions and what I do for God in my earthly life so I no longer choose to be enslaved by those who try to destroy all that God has in store for Caleb, me, my family, and all those who read about Caleb's journey. May you continue to be blessed through his ups and downs but most of all encouraged by a little 7 year old boy's perseverance!

I gave birth to our baby girl, Sarai, on January 26th. I was blessed to have a quick (but of course very painful) birth. Especially since I did it all natural! She has been such a sweet blessing and beautiful addition to our family.

Two weeks after Sarai was born, Caleb spiked a fever all of a sudden in the middle of the night. There were no signs of him being sick prior to this. In less than half an hour after his fever came on he started to seize. I called 9-1-1 and continued to monitor him as he seized although there was not much I could do. His seizure didn't stop even after the paramedics arrived and loaded him up with vallium. It didn't stop till he got to the hospital which probably totaled up to at least 15mins of him seizing. They found out that he had a really bad pneumonia after some chest xrays and was admitted to the PICU again. When the PICU Dr. called me at home he did not have good news. He said it was really bad and didn't give me much hope in him coming through this one. As you can imagine, my emotions were going wild! I was crying, scared, surprised...and I just had a baby too! I started to pray and pray. My mom came over to watch the two little ones so I could go to the hospital to see him. When they showed me his xrays I could see that his lungs were filled and totally whited out. Caleb was back on a bunch of machines and tons of medications. It brought back memories of when he was initially in the PICU. But he's such a fighter...He was discharged from the PICU 4 days later. When he came home he was back on a bunch of seizure medications again and it made him groggy pretty much all day. A week later (with his neurologist's support) we lowered his phenobarbital (seizure med). A few days later he started to twitch constantly. His whole body would twitch all day and it looked like he was having a seizure but his pupils were reacting and his blood oxygen levels and heart rate were all fine. I took him back to the ER where they told me that he was not having seizures and sent us home.
A couple days after that his twitching movements continued all day, non stop, except when he was sleeping. So I called his neurologist and demanded that he see him in his office that day. When we took him in his neurologist said it was seizures so we were ordered to go to the ER so they could load him up with medication and see if it would stop. It didn't. He was admitted to the regular floor once again. They tried using medications to stop it but nothing worked. They did an EEG and it showed it wasn't seizures. He was discharged after 4 days and his twitching continued. We kept following up with neurologist and finally he was diagnosed with Myoclonic movements. He took a really big blow with the big seizure he had and this was the result. They put him on medication to control it and it started to decrease and eventually stopped. He then became really hypertonic and spastic so we had a hard time doing even his daily stretches. His PT suggested we not put him in his wheelchair unless absolutely necessary and his cares changed dramatically. I never thought of him regressing so this has been really, really hard.
Now Caleb is doing much better. He is easier to stretch and we have started to slowly take him out more again. It was so hard to have to change to do things without him! Things aren't back to "normal" yet but I believe that it will get there and better!
There have been so many changes this year and lots of unhappy things in our lives it's been a bit harder to keep a smile on my face. I'm so exhausted of being slammed down every time I get back on my feet with a REAL smile.
I'm smiling...I am. And I'll always be hopeful because it is who I am and I can because of HIM who gives me hope even through the darkest of days...


Anele @ Success Along the Weigh said...

I'm so sorry to hear this but glad to hear Caleb is beginning to improve. We've followed his story since it happened and he is always in our prayers. Congrats on your new blessing!

Who is who? said...

The devil possess those that think they can speak to god in tongues. Haha- your runted aunt rana is one of them. !! No wonder this is happening to you and your brain dead retarded child- because of the midget that runs in your husbands family.