Tuesday, October 4, 2011

Thereʻs been many changes here in our home lately but things have finally settled in. We got a couple new nurses who are working out okay. Yes, Iʻm deeply saddened to report that Patrick is no longer Calebʻs home care nurse. But he will forever be a favorite uncle to our kids! We also lost another great nurse, Susan. But she will also forever be a part of our family. They are both exceptional nurses..hard to find and I miss them both very much! We also decided to switch nursing companies and that has lifted a huge stress off my shoulders! Iʻm enjoying that part.
Caleb had his 8th birthday a couple weeks ago and we got to go spend the day with "uncle Patrick" at his house on the water! It was a beautiful and relaxing day and the kids were so happy to see him! We had planned a little family celebration for Calebʻs birthday later that weekend but I got the stomach flu and we had to cancel. I hardly ever get sick and almost never get that sick to where I canʻt take care of myself or my kids. I think the last time was 2 1/2 years ago! It was really unpleasant but I got to sleep a lot! I donʻt remember the last time I slept so much!
Time has seemed to be flying by! Caleb is getting a lot better at tracking again. His little sister loves to cruise by him and sheʻs so good at not touching his trach! At least when Iʻm around. Sheʻs a smart little girl! I love watching my kids together. They are all such a blessing! Yes, it is often stressful, especially when Micaiah is not listening or Sarai is screaming or Micaiah is picking on his sister. But as stressful as it can get, I do enjoy it...ALL OF IT!
Caleb hasnʻt been sleeping well at all lately. Well, he never really has since his accident. But since his seizure in February, his sleeping patterns became worse. Now he usually goes to bed at about 7pm or sometimes a little later and wakes up at 10pm. Once in awhile heʻll sleep till midnight but he is ALWAYS up by midnight at least! So I really donʻt get ANY sleep anymore! Iʻve often been sleeping when Sarai takes her morning nap but then itʻs hard to get anything done. By the time we wake up we have enough time to eat and then need to pick up Micaiah from school then we have about an hour before the nurse leaves. Itʻs frustrating to have to choose between not getting sleep and getting out of the house or getting rest and not getting anything done. Iʻm tired all the time but I donʻt like not doing anything. Poor Caleb looks tired throughout the day too. The doctors canʻt really figure it out and we tried putting him on Ambien but it didnʻt work. I wish I could help him sleep because Iʻm sure he is miserable not being able to sleep at night too! Please pray that he will get RESTFUL sleep. Pray that whatever is hindering him from being able to sleep be cast out in the name of JESUS! This has been my prayer over and over for awhile now and Iʻll keep on believing that he is able to sleep well! Thanks and sorry for such a long overdue post. Please email me or comment to let me know if anyone out there is still reading this since I put a pause in my posting. :)

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...