SHS Homecoming 2009

For all my non-Texas friends - Kaleigh is wearing a Homecoming mum. To all my Texas friends, did you know that we might be the only state that has this tradition? The flower shops, making some money, here in Texas!!!!

NO more shots!

$120,000 worth of ACTH - our six week supply!

Supplies ready to give one shot!?!?

Numbing medicine was placed on alternating legs, one hour before shot time. It worked wonders! The ACTH is a gel and very thick and takes forever to get out of the syringe.

The shot didn't hurt towards the end, he just hated being held down.

Just a little love from bubby makes it all better!

We had our follow up Neurology appointment on Tuesday. We had a normal EEG for the first time!!! We are so excited about the great news! They are running yet another test, to help rule out other possible problems. The genetic test they are running is for Menke's disease. We suggest you don't read up on it, it's highly depressing, have FAITH! So we will wait another 4-6 weeks for test results, we'll be glad when we can cross this one off our list.

Jacoby is on a Z-pack, again for another ear infection. While at the Dr. on Monday for the ear infection, we found out what we thought we knew all along, that Jacoby is legally blind. While we have our moments and still do, we are trying to be strong. Why? Why? Why?

How do you take a blind child to a baseball game and say sit here and watch? Come on let's go watch your brother's football game? Did you see your sister stick the landing on that flip? How do you talk to a child who is blind? It seems like every WHY we have God is showing us the way. Thanks to ECI, Dr. Edwards, our family and friends who keep reaching out.

On Tuesday, Maddux's football team played Weatherford and won 20-0, he scored 2 TD's! Kaleigh has been in cheer camp all week. She is loving it!!! Performs Friday night during the homecoming game. I hope it works out and I can get some good pictures! Tonight she has her first volleyball practice and tumbling.

This weekend is family weekend at Tarleton! We are very excited to meet the baseball players parents and possibly catch a sneek peak of the team at a scrimmage!

It's that time of day again, to load Jacoby up in the car to start our taxi service!

The Smell of Football is in the air...........

No seriously have you ever smelled a Jr. High Football player after a game? It burns your nose!

Maddux is playing his first year of tackle football. We have been super excited about what football might bring out in Maddux. So after the first day of practice he told us I'm trying out for Quarterback and Linebacker. Neither one of his choices shocked us, but we knew the QB spot is a hard one to win. Days went by, typical Jr. High comments are made, "you should just be a receiver or a running back, you be guaranteed a spot on the A team."

We asked Maddux numerous times, what position do you really want to play? Every time the answer was QB! So we had the talk about doing what you really want to do and not giving into what everyone else wants you to do.
So the day before teams were chosen one of the coaches tells Maddux, you can play A team receiver and safety or B team QB and linebacker, sleep on it and tell me tomorrow. Maddux precedes to tell us he has a decision to make. So Bryan and I don't give any input, this is going to be his decision! He said "I'm picking B-team." Bryan and I both said - WHY? He quickly said,

"because I'm a leader!"

We were so PROUD of his choice and his reasoning, but quickly ran out of the room, trying to hold back those PROUD tears.
So last night was the first game! The 7th grade B team played the Cleburne (Smith) team. First play of the game Maddux throw a TD pass! Second play he ran, he runs 80 yards for a TD. Throws 2 more TD's during the game. He played linebacker-a position he loves!

Thanks to NANA who stayed home with JJ and Kaleigh, so that mom and dad could be there for our first game of our first year of YELLOWJACKET FOOTBALL!!!!

10 more ACTH shots!!!!

Is this the same little boy? Poor thing - side effects to ACTH - Moon Face!

I think he's got a Moon Face!

He was very energetic this morning and wouldn't stay still so I could take a picture. It may be blurry but he's got a smile on his face.

We have 10 more ACTH shots! Personally I won't miss giving his shots everyday, I'm ready to be mom and not a nurse. With stopping the shots a lot of additional worries will start. #1. Can we keep him germ free for 3 months? Immunity surpressed is not fun. #2. Will the seizures return? In what form will the seizures return? We've been told we will be on med's for the rest of his life. #3. Will we ever get back on a schedule? Will we sleep more than 2 hrs at a time? #4. will progression return? Can we regain motor skills? #5. Can we just set back and wait?

It's time for the Moon Face baby, to have another ba-ba so I better get to mixing it~

LFK - Little Fat Kid

Jacoby chillin' in his toy tub!

So far so good! With the exception that NO ONE is getting any SLEEP in our house. That could be why I've not updated lately!

Last week sleep totals:

Jacoby 33 hrs

Mommy 23 hrs

I'll be glad when we are off the ACTH so hopefully we all can get some sleep around here!

And yes, Jacoby has a new nickname LFK - Little Fat Kid!!! Poor thing - the med side effects are hard on his little body.