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


Saturday, May 8, 2010


We have had a very busy week. 
I had planned on taking off on Wed so Jake and I could do a doctor appointment marathon.  It would all start with the always anticipatated ob appointment.  Then we would drive to Ft. Worth for Jake's neurologist appointment.  Finally, head back home for a peditrician appointment that afternoon.

Things took a turn Tuesday when I received a call from Addison's school, informing me she had thrown up from her excessive coughing.  Since the previous Friday, when her seasonal allergies started to kick in, she had been coughing and coughing.  Her cough is aggravated by running, walking or even sleeping.  She had been up all night every night since Saturday  coughing up a lung, until she would finally gag herself.  We tried everything, to no avail.

So, luckily my mom was able to pick Addi up Tues. and give her some TLC before she brought her back up to my school, where my dept was throwing me a baby showewr.  We had a great time and were showered with much love and gifts for our likttle man.

I took Addison to school Wed. morning, and about a hour later I got another call from the school nurse, informing me they thought she had pink eye.  So our plans change a bit once again.  Instead of hauling just Jake to the appts. I now would haul both kiddos and add an appointment for Addison.

1st appointment-  My appt. was great , uneventful, but great.  Baby is head down and low.  I go back in 2 weeks for the dilation check and a sonogram.  I am counting the minutes until that one, as these braxton hicks are really picking up.  Soo exciting!

2nd appointment-  GREATNESS!!!!!  Jake's appointmet took me over the top with joy.  His blood levels came back fine , in regards to liver functioning.  BUT, his blood levels were way low.  Meaning he is/was not even anywhere near therapuetic level with his meds.  To me this is great news.  If he has such good seizure control, depending on how you look at it...compared to where we have been, or simply seizures, on such low med levels, then hopefully a little tweak will really help him!  We decided to up Jake's Felbatol, and leave everythig else the same.  It is my hope, that if this works a bit we can wean his benzo, Clobazam.  Dr. H also informed that Clobazam was not as addictive of a Benzo as many out there.  This, too, was great news. 

I left that appointment on cloud 9! well until I found the screw in my rear tire...

3rd and 4th appointment-  Jake's well baby appt. went well.  The only hitch was he did not do so well on his eye exam.  The ped recommended we go see a specialist to make sure his eye sight is ok.

She also , thought that Jake could have a possible sinus infection, but we were going to wait it out, as he is already on so many meds.

It was also confirmed that Addison has a sinus infection and pink eye. 

Thursday Addi stayed home with my mom and dad to nurse herself back to health.

Friday, FINALLY.  I take both twerps to school and ...here we go again....within 1 hour of my work day, I get a call that Jake know has suspected pink eye.  Again my mom saves the day and is able to pick hm up, until I can leave work.  Thank goodness I work with some awesome people and they were able to make this happen for me!

By the time I picked up Jake his poor, little eye was swollen shut.  Luckily, when I called the dr., he was able to simply call in some scripts for Jake, so we didn't have to go sit in a crowded waiting room again and pay some more copays.

Although, our counter currenty looks like a drug store, both twerps are feeling and looking much better!

A bee is never as busy as it seems; it's just that it can't buzz any slower.

Kin Hubbard

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