Jacoby Turn's One.....

Let me start catching up. The most important thing I've not blogged....the baby turned one!!!

Jacoby Jax Conger - our Christmas baby 12.25.08 Who knew what the first year would bring? It was full of ups and downs, but keeping FAITH that God is in control, it turned out to be a wonderful year.

Jacoby started his Birth "day" out at 5am ready for Santa! Maddux and Kaleigh choose to sleep in this Christmas (the first Christmas ever -makes me so sad they are too old to enjoy Santa), but I have a feeling next Christmas Jacoby will be waking them up, I can't wait!!! Finally Maddux and Kaleigh woke up and we had our family Christmas. It wasn't long till Jacoby went down for a nap, the longest nap he's ever taken. At dinner time Chief, Nana, Grannie, Bryan, Maddux, Kaleigh, Jacoby and I started our BIRTHDAY PARTY!!! Soup and sandwiches hit the spot, before we helped ourselves to the Cookie Monster Cupcake Cake.

Cookie Monster Cake designed and prepared by sissy - THANKS Kaleigh!!!!

So it came time to sing HAPPY BIRTHDAY...............

Jacoby freaked out at everyone singing at the same time...................He turned and crawled up his da da as fast as he could..........So with Jacoby's oral sensory disorder, that means he still doesn't eat food and does not like anything in his mouth. We thought this might not go so well.Well, we were wrong, maybe it's because I don't cover his baby food with frosting!!!!!

HAPPY BIRTHDAY BABY BOY...................

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.