Update Update!

WOW! I totally forgot about this blog. This would probably be a good time to update it, although few read it! I guess if I posted more frequently....there might be something to read. HaHa. 
So much has happened this past year where do I even begin? OK I guess I will start with this.. 


~Eli's Journey~ 
On January 5th 2011 our lives would change forever! It was a typical Wednesday. My 3 year old nephew was here for the day. Kylie(4), Eli(3), and my nephew just had finished our home preschool program. Samuel(16 months) was down for his AM nap, thank the Lord! The kids and I went into the kitchen and I started to make lunch. The kids gathered and sat around the kitchen table. I gave each of the kids a hand full of pretzels to keep them busy. As I turned around to walk out of the kitchen to see if Samuel was up, I heard Eli roar like a bear. As I spun around, he continued to roar and started to climb up on the table. Very out of his character at this point. I started to walk towards him explaining that was not appropriate at the table. As I started to help him off the table and back into his chair,  his arms flew up and back, his eyes rolled up, and he started to arch his back then he started to convulse....Oh and did I mention he had a bite of pretzel in his mouth. No amount of training will ever fully prepare you to see your own child in this state. Only by the grace of God I immediately recognized it as a seizure. Got him to the floor, turned him on his side to the recovery position, did a jaw hold and finger sweep to get the pretzel out, flung the pretzel across the room, grabbed the phone and called 911. Still seizing and gasping for air I told the 911 operator as calm as I could my address, name and that my 2 yo son (opps ...he had just turned 3) was having a seizure and to get someone here as quickly as possible. All the while my beautiful 4 year old little girl was screaming, "Mommy, Is he going to die!!!" " Oh Mommy what can we do!" All I could utter was, "Kylie I don't know honey,  just pray." She is a little prayer warrior. She immediately started praying. My nephew just sat there with eyes as big as silver dollars. I am still not sure what he thought about it all. As time passed the convulsions stopped and he then was a limp rag in my arms. I was checking vitals and trying to get him to come to.....It wasn't working. I had seen seizures, but nothing like this. The post ictal state was unfamiliar to me. I kept thinking... did he stroke, what's going on. My prayer in that moment was Lord if you have to take him I know he is yours, but I love hime so much....please don't take him from me. Dear Lord help him, help me help him. Josh flew about 80 all the way home, I think my brother did too.
The ambulance came and we went to the hospital ER. They confirmed a seizure and we went home. 
That was just the beginning! since then I will summarize the rest...
January 2011- about 5-7 tonic clonics, 2 ER visits, MRI's, CAT scans, and EEGs with no findings, and 1new great friend Kris (our EEG tech)
Febuary- More tonic clonics and the development of new seizures, Myoclonic Seizures...very short with brief vocalizations.
March- No more tonic clonics, myoclonic absence seizures started to present and more myoclonics and another ER visit and up to 60-200 seizures a day. The myoclonic drops started to appear as well. Just a slight head nod at this time. 
April- Was the worst thus far. 100-300 seizures a day...1 every minute! could no longer talk, walk, and was the first time in a year and a half I had to put a diaper back on him! By easter our little Eli was gone. And we were wondering when this would all end.
May and June- where a little better as I recall. God allowed us a couple good days amount the bad.
24 hour EEG reveals like 600 seizure is 24 hour period. NUTS!! and we are asking OK Lord what do you want us to do next.
July and August- awe yes, vacation time, and here comes the monstrous myoclonic drops(looks like we are forcibly throwing him to the ground!) Results of which are bloody lips, goose eggs and a lot of boo boo's. Thus the first purchase of a helmet, curtosy of Uncle Oppie. 
Septemper- Glory be to GOD!!! One completely seizure free month!! Absolute joy!
October thru Febuary- Continual worsening.


At this point we rejoice for a seizure free minute....just one minute and at this point his seizures are lasting longer and are  taking more of a toll on him than ever.


Today Eli's head met the tile floor in the bathroom. Resulting in a huge, purple and blue goose egg. Just makes me sick!


You know at the end of the day, all i can say is that the LORD must be holding me up....I have no legs to stand on! He is my rock and shelter. He must be Strong cause I am so very weak!
I will continue to glorify the LORD. 


I will leave you with this...my two readers.


The Lord had done great things for us and I will Praise the LORD!