Seizure – A parents nightmare

This is a rough recollection of events from yesterday. My apologies for any missing or misspelled words.

     Kamron, our oldest child, had a seizure yesterday evening (2/212014). I don’t think I will get that image out of my head any time soon. All I could do was hold Kamron and yell for help. Amiee fell while running to the neighbors to see if Mark (nurse, also known to us as the Burbs) was home. She hurt her knee and side. Amiee was also calling 911 at the same time and on the phone with them. Once the Paramedics got here Kamron had was coming out of it and was disoriented and had slurred speech and complaining about not being able to move his legs, assuming its because of the lactic acid build up from the seizure. Went to the Hospital with Kamron in the Ambulance. The Driver said he was a PA and led me to believe our decision to have the kids get the HPV shots, their last one was yesterday, was not what he would have recommended. He continued to get better, speech-wise. Once at the ER I spoke with Dr Tang, she was very nice. Kamron had blood work and a CT scan done. Kamron’s blood work came back and his potassium level was at a 2.9, the gave him some oral supplements to take. Dr Tang talked to us and said that his CT scan showed everything to be normal and that his potassium level is a separate nutritional thing. She said that based on everything Kamron could be released but did say that she wants us to take Kamron to see a pediatric neurologist Monday or Tuesday Dr Tang said she could prescribe some anti-seizure medicine in the mean time, not that he has to stay on it or maybe change to some thing different or take anything at all, but more along the lines of being procausionary. Amiee and I agreed to have the script and get it filled. We got Kamron home and our neighbor Cory brought Jenna over and came to help me get Kamron inside the house. This ended up with me picking Kamron up and carrying him with Cory’s help inside. Amiee slept in the bedroom and I slept in the spare bedroom so that I could hear him better. Amiee woke me up at some point early this morning to help get Kamron up to go to the bathroom, he was still having problems with his legs. We all went back to sleep at the point.

I woke up at 10:00. Went and checked on Kamron. Kamron had already woke up. He is sounding much better, moving a little better, still complaining about not being able to move his legs and feet very well. I told him it will take a couple of days. He took his first dose of the seizure meds, which we worry about the side effects of suicidal thoughts, depression, etc. Amiee is feeling bad, she’s hurting from her fall yesterday, the side of her stomach hurts, her knee, toe, and legs.

I just thank God for everything and giving me the strength to do what I do. I just some times…just take a deep breathe and let it out slow.

Reflections of a 40 year old husband, father, son, brother.

I find myself looking at my life lately wondering…Is there anything in the past that if I could, would I change? Have a I made the right decisions? Am I happy? Should I change? Have I been a good husband? A good father? My wife assures me that I am and have so many times. The truth is, all of my past events or moments, big or small have molded me into the person I am today. Sure, there are some things that I am not happy about. Some things that were in my control and some that were not. In so many ways, I feel very good about who I am yet feel a deep tug to do more, to do better. The only problem with that is myself getting in the way. I am 40 years old. I am afraid of growing older and that one day I will die and no longer be apart of this place, this time, that time, here…these thoughts can sometimes send me into a spiraling panic that last for seconds, sometimes minutes, sometimes they haunt me for days. Do I believe in God, yes I do. I’ve always believed in never giving up and working hard to reach my goals. But some times, some times I get in the way of myself. Right now, I find myself struggling, struggling to break free of years of bad habits. It’s time to change. To change for me. To change for my family. I can feel it building inside and can only hope that when it happens I am strong enough to hold on and not let go. Now if any of this makes sense to anyone, then you’ll understand where I am. If it doesn’t, well then, just chalk this up to a babbling adult who has a history of talking without saying anything meaningful…at least that’s what one old brother once said about me.

Sjogrens – a life long adventure changed for ever

Sjogrens – a life long adventure changed for ever.

… for I am truly blessed.

My wife, my love, my friend

Some days are good some days are not too good. Over the last few years since her diagnosis close friends and family have disappeared. It breaks her heart. Some friends are close enough to brighten her day yet too busy with their lives to reach out to her. While others are far away and lack the ability to reach out to her because of their busy lives. She hurts and they don’t understand. She has a disease that requires compassion and understanding yet we are left were family/friends/people are not able to. She’s sad. I try and try to hold her up. To be there. To cheer her up. It’s not what she’s longing for.

Just a minute break

Yesterday started out not so good. She felt sick at her stomach. Hard to say if it’s because of the new meds or a bug. Our son stayed home from school sick. I had to work away from the house, not good timing. At some point though in the mid afternoon she started feeling good and was able to walk to the bus stop, about 3/4 of a mile to meet our daughter after school and walk home with her. We she told me that, I got super excited, I told her that’s great. She told me she’s going to have to get better about exercising event when she’s not feeling the best.

Post doctor visit

Doctor has given her a different medicine to take for a month to see if this helps. I hate that every time we go there’s always blood work to check for this and that. I know it has to be but I still don’t like it. We were also told, again, today that she needs to start exercising. I just don’t know how that’s going to happen when she hurts so much lately or when she does do something how it impacts her physically.

Update

Things have been pretty tough lately. She hasn’t been feeling well, hurting a lot and doesn’t seem to be able to relax any. She made an appointment to see the doctor tomorrow morning. We decided that May was too far off and the medicine isn’t working. I’m not sure what tomorrow will bring.

My wife has Sjogren’s

I really don’t know if this will turn out right or if anyone will read it. It’s more or less a way for me to put my thoughts, feelings, and life challenges out their to see if anyone else faces the same.
My wife has Sjögren’s Syndrome. She was diagnosed in April of 2010. Our little family has gone through a lot of life changes since then. It also amazed me how much of our other family and friends still don’t understand the good days and bad.
I need more time to think…