J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


Monday, May 24, 2010

little update

Just a little update, as I have been MIA lately.  We have been busy, with Addison's soccer, getting ready for baby, play dates and additional bouts with pink eye.

We went to the dr., ob/gyn. last Wed.  While everything looked great, Lil' Bit, is just that....little.
Therefore the dr. wants to take some precautions and get sonograms from here on out.  He is not overly "excited" about this, but also wants to take precautions.

In questioning his motives and sonograms. he said that if the baby is still measuring small, we will look at bed "evicting"  Needless to say, we are very anxious to see how Wednesday goes.

Last Monday, Jake came to me  as I was blow drying my hair.  he stood before me, looked at me dumbfounded and asked "What'd you do to me eye?" 

I looked down at him and sure enough, his little eye was locked shut from excess eye "goop."  Luckily we had just about 2 drops left of his eye drops and started that immediately, until we could get another script called in.  Although, it was an inconvenience, mostly for my mom, as she was once again, "the chosen" one to haul him around and watch him while I worked, I am glad it was just pink eye.

Do I dare even say it.....I will probably get shot by a handful of people for boasting, but here goes....

Jake has been seizure free for 11 days now!!! (knocking on wood, fingers crossed, and whispering this news)

I don't recall a time period of 11 days seizure freedom since this damn beast has come to visit.
While we are so very grateful, we are definitely "clenching!"
This beast is a bully and very sly...you never know what his plan may be.

Please pray for Aiden, as he is still in the hospital. He was able to leave ICU last week, but things have once again made a turn for the worse, so it looks like he may have to be taken back down to ICU very soon, as he is in NCS, nonconvulsive status. (more about NCS)

Aiden's caring bridge

No matter how steep the mountain - the Lord is going to climb

it with you.

- Helen Steiner Rice

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