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


Wednesday, October 15, 2008

So here we are in beautiful Florida! Literally, the place my husband and I crave the most all year long.

However, I sit here in tears.

Yesterday we went to the neurologists. He said Jake looked awesome! He did confirm Jake had a "bad case" of epilepsy compared to others. He also did say Jake is doing great. Well, I could have told him that, after where we have been! Jake had a couple or several seizures in the room with the doctor. Matt and i did nothing. Babi was with us and did nothing. The reason? Because this is VERY calm as opposed to what we are used to watching and have watched. The doctor kept looking at us as if we are nuts. I ,at the time, thought he was giving me these looks b/c I rattled off millions of questions. Upon departing, though, he says numerous times..."I can't believe how well he is doing, especially after all these seizures this morning!"

I am thinking what? I thought "this was all normal?" I walk out feeling proud that my son can "handle his seizures." But you know what....what the hell is that?!! We can handle them because we were told "oh it's normal for seizures." Who the hell knows what's normal or not normal?! Its not normal that my son is having seizures after three years of life!! It's not normal that our lives have changed soo drastically that we can't even recognize it! It's not normal, that my son, who is 3, reminds me to give him medicine!! This is not normal...nothing is normal anymore.

So, we get up at, Matt at 3:30, me at 4:00, to be on the road at 4:30. We are on the road at 4:30 for the 12 hour trip. The kids look at me with glee as I whisk them out of their bed and into their car seats, still in their pj's. Addison's firsts words, in all her slumber, were "This is going to be the most exciting day ever!" How can we not be excited for this trip?! Especially after these words.

The kids didn't sleep for the first hour and Jake didn't seize. The doctor told us to give Jake "an extra dose" of one med right before we left and then continue our regular med path all day.

The twerps finallly went to bed a hour into the trip and slept for 2 hours or so...Upon waking Jake had several seizures, again we thought this was normal. We continue down the, what seems to be endless highway, have more naps, more greasy meals and FINALLY arrive at the coveted BEACH HOUSE!!

The kids, Matt and I are unloading, unpacking, and only thinking of getting to that beach for sippees of juice, glasses of wine, cans of beer,and THE SUNSET.

NOPE, didn't work out that way. While un packing and "relieving" ourselves, Jake has a "tc". I heard his helmet hit the floor, but was in another room, about 2 feet away, and on the phone. When I went to check on "what Jake had broken" there he was in full seizure wearing his helmet and all. I clocked 2 minutes, but it could have been more...not much more but maybe 30 secs. to a minute. I did not give er meds, as I am nervous about what all this Valium is doing to him. So here starts our much anticipated vacation week, I hope this isn't a sign.

BUT, we are here and SUPER happy. Jake did actually act like he had a seizure for about 10 minutes. He is now fine after much pizza, swings in the hammock, explorations of his new house for the week, and is now fast asleep, anticipating a new day.

The tears? First because, why a TC now?! is he regressing? How close and sheltered do I neeed to keep him? Secondly, I have read Jenny Mccarthy's book "Women Warriors," and it is the MOST fabulous book ever, in regards to, not only Autism, but kids kids with special needs. I have been telling , or maybe even preaching ,to everyone about this book, it's doctors and its practices. I then went and bought the first book, "Louder than Words."

Here come the tears. The first 50 pages, or so, are LITERALLY our lives starting August 1st. She literally spoke every word I yelled at the paramedics in my head, or cursed to the doctors, or swore to the nurses. Word for word, Jenny Mccarthy is speaking our lives. The testing. The returns to the er. The puzzled looks on doctors faces. The difference? Jake does recover and doesn't have Autism. The difference? We, Matt and I, sit here and think all this is normal....Jenny does not and is taking a stand!

I will take a stand with her. Our precious kids are worth it!

I beg everyone to read her books....even if you don't have a child that has "issues" it truly is an eye opener and makes MORE than enough sense!

God Bless~ Christine

PS Tuthill's- nothing was broken!:-)

1 comment:

andie said...

I heard about her book and read bits in magazines. I have followed her story very well. Did you see that they originally were told that her son had epilepsy? I was wondering if you tried that diet yet. Maybe wrong meds or wrong docs. You never know. Apparently her docs didn't at first either. Keep pushing and you will get there. God Bless and love always.