Pure Joy Update ............

Snap into a Slim Jim! Working on the Oral Sensory disorder, by letting him chew on different taste and textures.

Played a little baseball this weekend. Maddux did great!

The Fashion Police - Kaleigh and Chelsea went to a party Halloween night! Movie's, games, dancing, food and fun!

Maddux and Ohio after beating Brewer! Great Game!!!

Kaleigh at tumbling! Has mastered the round off back handspring, just working on multi back handsprings!

Aces volleyball #20. Win again! They are pretty good, if I can say so myself! We are finally at the bump-set-spike stage and it actually works!!

The After Party - After the Jr. High Halloween dance a few got together for an after party! I've never seen anything so fun! They had a blast!

Jacoby working hard during PT!

Bryan and Maddux off to the Hall of Fame luncheon, where Coach Allen was inducted. They looked so nice!

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.

Back to School 09'-10'

Blogging from Nana and Chief's Airstream trailer! Why you ask? The AC is out at our house.

So it's the first day of school again! Maddux is going into the 7th grade. He had to be at school by 7:20am because he serves on SIT (students in touch). He was to help students find there way around, I'm not sure how that's going to work since he's only been in Henderson Jr. High one other time! He was up, showered and dressed by 6:15am.

1st-Athletics

2nd-Reading

3rd-English

4th-History (*Texas history)

5th-Math

6th-Life Skills/Spanish

7th-Science

*Texas History-he's never had before. Showed the kids a picture of the Alamo and ask them what it was, they had no clue!

Kaleigh is going into the 6th grade. Thanks to her friend Chelsea who called her at 3:30am this morning and told Kaleigh to get up! O-those girls! Kaleigh was nervous this morning, I'm not sure why? She has a great homeroom teacher and is in blue hall this year, so she will have all the same teachers Maddux had!

Homeroom-Lemons, love her!!!

1st-Reading

2nd- TA/PC

3rd-Math

4th-P.E.

5th-Oasis

6th-English

7th-Social Studies

8th-Science

Bryan also started back to school today! He had his first team meeting last night. They set their goals and expectations! They are mighty high expectations, but I have no doubt they can accomplish them. It's been many years since Coach Conger has felt this great about his team going in. Plus he has a great teaching schedule this fall semester with only 2 classes to teach.

Shhh-Jacoby and Mommy actually went back to sleep when everyone left! It's a great start to a new school year!

Football Equipment check out

Maddux's self portrait-

Today really hits home that Maddux is starting Jr. High. Today he had football equipment check-out, he was really pumped up and excited. I think the fact that he got a brand new helmet and not a used one, made his day!

Maddux has never put pads on and has never been hit! That will change next week! We will see if that excitement is still there!

Neurology Follow Up!

It's been 2 weeks since we've been to the Neurologist and started our ACTH shots. The last seizure he had - 12 days ago. We started yesterday morning with an 8:30am EEG at Cook's. This time they didn't use the glue on Jacoby's head, they just used tape and a fancy wrap. After the torture of getting the leads connected, they used the strobe light to stress him out, then followed up with me attempting to get him to calm down, so they could read brain waves in both situations. Of course he was hungry (he's always hungry) so they had me feed him while still hooked up and of course he puked all over himself and me! At least he a had a change of clothes! The great EEG tech washed the rest of the left over glue out of Jacoby's hair with their special shampoo!

We then had an 11am appointment with Dr. McGlothlin the Neurologist. He was amazed with Jacoby's energy and laughter! He said he's physical activity is better than 90% of the kids he see's on ACTH shots. The Dr. wasn't happy with the EEG results. The brain waves are better but not as great as he wanted them to be at this point. So he changed up the dosage and put him on yet another drug - Topamax. This new drug is suppose to help control the seizures as he tapers off the ACTH. What's the side effects of Topamax? The same as ACTH insomnia!!! He never sleeps as it is!!!

We are still waiting on one Lab test to come back. The Dr. is expecting it to be normal. All the test have come back normal with the exception of 2 - Metabolic screen and low copper. These 2 are barely out of the normal range, so we are rerunning these test. Jacoby is becoming a pro at giving blood! We don't go back to the Neurologist for a month and by then we will be done with the ACTH shots! How Jacoby's body reacts after we stop the shots, will help the Dr. in what direction we should go and what test we will start up next.

We are going to see the Ophthalmologist on Tuesday. I'm not looking forward to this trip at all. The MRI showed small optic nerves and what I've read this is not good news. But, I do have great support going with me! I love having my Grannie living close to me again.

Showing IS who's BOSS!!!

With IS (Infantile Spasms) a child will lose cognitive skills and regress on motor skills. Well, Jacoby is proving IS wrong! He now enjoys sitting up and you better not touch him! He is very independent and wants to play on his own!!!

For the first time today Kaleigh hung a toy out in front of him while he was sitting. He reach out and grabbed it on his own and remained balanced!

Thank you for lifting JJ up in your prayers, keep praying for progress!

Infantile Spasms

Let me see if I can get through this. On July 25th Jacoby started having seizure like episodes. The first one, Bryan and I thought he was seeing for the first time. His eyes were moving together, which they never have done. Then he would have a falling sensation. After the second I called Dr. Edwards right away. On July 27th Dr. Edwards watched a video we had recorded of Jacoby and we started the process of trying to get him into a Ped's Neurologist. First available date was in November! No way we could wait that long!! By then he was having them 4-6 times a day in clusters of 10-20. It took Dr. Edwards calling the Neurologist to get him. So on Aug.8th we went to see Dr. McGlothlin at Cook's. After a short talk and watching the video's, he admitted us into Cook's Children Hospital within the hour.

Bryan and I had played doctor, done our research before we even went to the Neurologist. We thought it was Infantile Spasms before we even went in. So it didn't scare us, when we first found out. But shortly after, it started sinking in! All our research told us it could be a varity of things causing the spasms.





(Infantile Spasms or West Syndrome - is caused by something else. We won't just get rid of the seizures and it will all go away!) I can't even find a way to type the list of possibilities, because it still scares me to think about it and I'm working on letting God take control.

So while at the hospital they hooked him up to an EEG for 24hrs to read the brain waves. Followed by an MRI and lots of blood taken! If an MRI comes back with nothing, then your possibilites of whats causing the seizures is cut in half. So the good news/bad news nothing came back on the MRI. So now we wait 4-6 weeks for blood test results to come back.

How do they get the seizures to stop? In 60% of the cases they can get the seizures to stop with the drug - ACTH given in a shot form once a day for 6 weeks. (Worst thing a parent has to give these shots! Lucky Me!) This drug is only provided by one company in the world and is the only option avaliable in America.

We go back to the Neurologist Aug. 20th for another EEG, to see if ACTH is working.

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