Katie's pediatrician is referring Katie to a neurologist at UCLA ASAP. She says we need to get on this fast.
Looks like we will be seeing them this coming week sometime. I will keep everyone abreast.
Thanks for your prayers.
Sunday, April 19, 2009
Thursday, April 9, 2009
Yet another hurdle to scale....
Mark and I got a call from Katie's pediatrician this morning and received some challenging news. The results of Katie's sleep-deprived EEG came back in not-so-good news. Evidently, Katie is having brain seizures. I'm not sure what that all entails... but it seems our medical journey is not over yet.
Thanks for your prayers. I will keep you posted as we find out more.
Chow 4 Now.
Susan
Thanks for your prayers. I will keep you posted as we find out more.
Chow 4 Now.
Susan
Wednesday, April 1, 2009
The Morning After.............. YAWWWWWWNNN.
Well, we did it. Katie was able to stay up ALL night... no sleep whatsoever.
Withholding her Clonidine was the key. Her hyperactivity and Tourette Tics went through the roof.. and she talked and blinked a mile a minute until I finally gave her her meds one hour before the test.
Let's see.... what did we do during all those late and early morning hours???
Aunt Bea worked the night shift while mommy went to sleep at 6:30 PM
Katie went with aunt Bea to the Yogurt Shoppe...
They made Pineapple/Canadian Bacon Pizza with Tortillas
They played SEVERAL Card Games.
They went shopping at our 24 hr. Walmart and bought a game for her Gameboy.
Aunt Bea did a LOT of listening to Katie's hyperactive ramblings... over and over and over...
Mommy woke up at 3AM and took over...
She and Katie went to Denny's Restaurant and ate a verrrry early morning breakfast.
We played several games of Skip-Bo while we ate.
We went home and took a shower (both of us).
Mommy trimmed Katie's hair and then dried it and put it in pig tails.
Got dressed and drove to West Hills for our 8:30 test (and fought traffic all the way).
A few blocks before we got there, Katie suddenly got very very sleepy and had to fight strongly to stay awake. I put some very upbeat music on in the car... LOUDLY... turned the A/C on full blast (brrrrr) and sang/shouted "Woo Hoo" often. At first Katie thought that was funny... but then she started to cry... "I'm just so tired mom... I don't think I can stay awake". I wanted to cry for her... and I told her what a great job she did in staying awake as long as she had.
When we arrived at the office, she laid on the table and was OUT COLD. In fact... 1/2 way through the procedure we needed to wake her up and get her to hyperventilate for 2 minutes... but all the screaming, clapping and shaking and stroking of her face couldn't do it. She was passed out asleep. The technician just giggled and said it was okay if we couldn't wake her... she'd make a note of it.
MAN-O-MAN... does Katie have an ACTIVE brain.... even when asleep!!!!!!!!!!!!!!
After an hour, the test was complete, and we had a dickens-of-a-time trying to get her to wake up so we could leave. I practically had to carry her out. She slept all the way home in the car (understandably) and once in the house, went straight to bed... which is where she and aunt Bea have been for the past three hours. We'll be lucky if we see them at all today.
As for me... I am exhausted... but there is much catch-up work to get done here at the house... so I will postpone my sleep till tonight... if I can.... and get my wife/mommy stuff done now. My first matter of business was to get this blog done for today.
We will continue this blog until she is back in school and we see how she transitions and fits back into real-time life. The battle's not over yet. In fact... this is where it's going to get hard. All our safety nets and security blankets are gone now... if this success is going to continue, we and Katie have a lot of work to do. But then, there's God...
And we are counting on that.
Chow 4 Now.
Susan
Withholding her Clonidine was the key. Her hyperactivity and Tourette Tics went through the roof.. and she talked and blinked a mile a minute until I finally gave her her meds one hour before the test.
Let's see.... what did we do during all those late and early morning hours???
Aunt Bea worked the night shift while mommy went to sleep at 6:30 PM
Katie went with aunt Bea to the Yogurt Shoppe...
They made Pineapple/Canadian Bacon Pizza with Tortillas
They played SEVERAL Card Games.
They went shopping at our 24 hr. Walmart and bought a game for her Gameboy.
Aunt Bea did a LOT of listening to Katie's hyperactive ramblings... over and over and over...
Mommy woke up at 3AM and took over...
She and Katie went to Denny's Restaurant and ate a verrrry early morning breakfast.
We played several games of Skip-Bo while we ate.
We went home and took a shower (both of us).
Mommy trimmed Katie's hair and then dried it and put it in pig tails.
Got dressed and drove to West Hills for our 8:30 test (and fought traffic all the way).
A few blocks before we got there, Katie suddenly got very very sleepy and had to fight strongly to stay awake. I put some very upbeat music on in the car... LOUDLY... turned the A/C on full blast (brrrrr) and sang/shouted "Woo Hoo" often. At first Katie thought that was funny... but then she started to cry... "I'm just so tired mom... I don't think I can stay awake". I wanted to cry for her... and I told her what a great job she did in staying awake as long as she had.
When we arrived at the office, she laid on the table and was OUT COLD. In fact... 1/2 way through the procedure we needed to wake her up and get her to hyperventilate for 2 minutes... but all the screaming, clapping and shaking and stroking of her face couldn't do it. She was passed out asleep. The technician just giggled and said it was okay if we couldn't wake her... she'd make a note of it.
MAN-O-MAN... does Katie have an ACTIVE brain.... even when asleep!!!!!!!!!!!!!!
After an hour, the test was complete, and we had a dickens-of-a-time trying to get her to wake up so we could leave. I practically had to carry her out. She slept all the way home in the car (understandably) and once in the house, went straight to bed... which is where she and aunt Bea have been for the past three hours. We'll be lucky if we see them at all today.
As for me... I am exhausted... but there is much catch-up work to get done here at the house... so I will postpone my sleep till tonight... if I can.... and get my wife/mommy stuff done now. My first matter of business was to get this blog done for today.
We will continue this blog until she is back in school and we see how she transitions and fits back into real-time life. The battle's not over yet. In fact... this is where it's going to get hard. All our safety nets and security blankets are gone now... if this success is going to continue, we and Katie have a lot of work to do. But then, there's God...
He giveth more grace when the burdens grow greater
He sendeth more strength when the labors increase
To added affliction He addeth His mercy
To multiplied trials, His multiplied peace.
His Love has no limit
His grace has no measure
His power has no boundaries known unto man
For out of His infinite riches in Jesus
He giveth, and giveth, and GIVETH AGAIN.
And we are counting on that.
Chow 4 Now.
Susan
We have a UCLA Graduate!!!!
The Graduate, Katie.
This morning we graduated!!!
What a wonderful morning it was!!! Grandma and Grandpa Cook met us at the house (they are my mom and dad) and we all caravan'ed to UCLA together in two cars.
Bea, Mark, Grandma Cook, Grandpa Cook (Mom was taking the photos).
We were met by a team of smiling, congratulatory doctors and therapists, and I gave them our last home report... a good one of course.... and several trays of muffins for the graduation party after the ceremony. One of the ABC Clinic workers has a secret connection with someone in the cafeteria, and they were able to get a big bowl of melon chunks and juices sent up for the party as well. We had to wait for Dr. Jessica (the psychologist) to arrive (she got stuck in traffic, and we couldn't go on without her) and then the ceremony began.
The red carpet was rolled out, and Katie walked down it with an expression of determination and sobriety. She was SO proud of her accomplishment... and for good reason. She has applied herself 100 percent, and the payoff has been great.
Then she got to sign the underside of the red carpet (that made me cry... seeing Katie's signature among HUNDREDS of other kid's signatures and dates of graduation).
After that, she was given her graduation gifts from the staff.... a plush puppy (that looks like "Tink" our new dog), two reading books of Katie's choice, and a singing/speaking Diva Barbie. Katie was beside herself with joy and excitement... and her face beamed SO brightly. It absolutely melted my heart.
Grandma Cook wrote Katie a poem about her graduation and how hard she had worked (and slipped some money in it for two months subscription to Toontown (an online computer game):
Congratulations Katie
This is the day we have waited for.
A day that we celebrate
all your hard work and accomplishments.
The work that you did is "FIRST RATE".
In this card is a gift for you
2 months of Toontown you'll get.
I hope you enjoy this wonderful game
Do we love our Katie..?? YOU BET!!
So remember all the things you've learned
that we knew you could do from the start
Your grandma... and your grandpa too
think you're SPECIAL and dear to our heart.
Love,
Grandma and Grandpa Cook
Everyone then ajourned to eat and party for about 1/2 hour... I got a lot of pictures of each doctor and therapist... and there were a lot of teary goodbyes. These folks... knowingly or unknowingly at the hand of God, were our miracle workers. And unbeknownst to them, were ministered to and told the gospel to from a 9 year old little red-head. It just doesn't get much better than that.
Miss Melody, Katie's First Psychologist
Miss. Jessica, Katie's Second Psychologist
Miss Barbara, Parental Counselor, Nurse
Miss. Pat, Educational Therapist and Educator
Miss Wendy, Social Worker 
Mr. Paul, Recreational Therapist (Katie's Favorite)
Miss, Joanna, Mr. Paul's Assistant
Mr. Lyle, Social Therapist
Our time at UCLA reminds me of when Paul the apostle was thrown in jail... he didn't want to be in there, but because God planned him to be there, a guard and his entire HOUSEHOLD were saved. We will never know the total effect of all the "Jesus and His love for us" talk that we and Katie did during these past two months at UCLA... but I believe we were right where God wanted us... and both side benefited by our being there.
The staff all mentioned that we had been the "Ideal" family, and Katie's progress was an anomaly... because although all the kids show some advancement by the time they leave, Katie made unusual progress... so rare... and the were all amazed and extremely pleased with her outcome... and ours as well. I told them all... "Well, we have a big God on our side". I can say without a doubt, it was most certainly because of all YOUR prayers. He hears you when you pray.
Katie stayed at the clinic and worked with her therapist for a few hours before coming home early at 1:30 pm.
Katie stayed at the clinic and worked with her therapist for a few hours before coming home early at 1:30 pm.
Tonight we need to keep Katie awake as long as we can... she has her sleep deprived EEG test tomorrow morning at 8:30. I am going to hold her Clonadine medicine tonight in hopes that it will allow her hyperactivity to help stimulate her and keep her awake.
Keep those prayers coming.
Chow 4 now.
Susan
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