Monday, March 22, 2010

This Friday

This Friday...March 26th...Is Purple Day! Will you join us by wearing purple...In honor of Landon...and all his seizure friends?!

Click here to learn more about Purple Day and the extraordinary little girl who launched the event.

And the disappointment begins...

I know I shouldn't be shocked that Landon had a big seizure today, but I was secretly getting overjoyed with his good days! It is a constant rollercoaster...and I'm ready to get off! I try to stay optomistic, but moments like this make me scream.

On a positive note the weather is beautiful today and Landon has been extremely happy and playful! I thank god every day for blessing our family with this wonderful little boy, but I also pray we can get these seizures under control. So for now I will continue to enjoy him, pray, and make the never ending phone calls until he is better!

Hope all is well with your family! Prayers continue for all of you!!!

Saturday, March 20, 2010

Better days...

I hate to say it out loud, but the last 2 days have been excellent. Maybe the extra prayers from all of our new friends are helping! I try to be happy for the good days, but don't want to be disappointed if/when the seizure begin again. I hope the seizures are gone for good...duh, right? (We all pray for this numerous times a day!)

We still are waiting on Philadelphia. We have decided to stop Landon's immunizations until we find a cause for his seizures. After much discussion, and a conversation with a new family friend, we just can't be sure that they aren't the cause of his seizures. It is extremely scary all the things you hear about them. I was someone who almost didn't believe they could harm someone...so for me to believe it could be a factor is somewhat crazy. But at this point nothing is ruled out, and the more I read, the more I wonder.

Thanks for checking in and all the prayers! We will continue to keep all our new friends and families in our prayers as well!

Thursday, March 18, 2010

The waiting game...

I haven't posted anything in a few days because everything is the same. Landon is still having seizures and we are still waiting to get the call from Philadelphia. I did call yesterday to make sure all our paperwork, and scans were sent. (if I don't worry about it, noone else will!) On the up side, we are still being blessed with absolutely beautiful weather! Landon and I have been taking lots of walks enjoying the sun! Also, Landon has been eating pretty well! This makes me happy, because I worry when he doesn't want to eat. So I guess you can say we are just playing the waiting game for now.

Friday, March 12, 2010

Landon's Seizures

video

This video is of Landon having a seizure in December 2009. They don't look exactly like this now, but this is the second type he had. They have changed quite a few times over the last 4 months.

Thursday, March 11, 2010

Sunny and 67

Today started off as another beautiful sunny day. Landon had his first seizure in a little over a day :( He continued to have two more large seizures today. I can't honestly say I am surprised. It seems that he has a good day followed by a few weeks of bad days. In my heart I think we still have a uphill battle to fight, but I am still staying optomistic we will find a good mixture of medicines to control his seizures. We are paitently waiting for the call to make the trip to Philadelphia!(We hope soon!) We just keep our heads up, and continue to take one day at a time! We are fortunate enough to have an AMAZING family, friends, and newly found friends to surround ourselves with. Thank you all!

Tuesday, March 9, 2010

Beautiful Day...

Today we finally had a beautiful day outside! Unfortunately, Landon slept most of the day...which is pretty normal since his med change. He finally seems to be eating okay now. He had 3 full bottles, and a half a jar of baby food. This is a big change from what he was eating! (6 or 7 bottles with about 3 jars of food a day...he's a big boy!) Hopefully once he gets adjusted to his medicine he will start being more alert, and eating better. With all the sleeping it's no wonder he seems to be behind on some milestones. We will continue to work with him and get him where he needs to be!

Monday, March 8, 2010

One day at a time...

My husband and I were blessed with a beautiful baby boy in August 2009. Soon after he was born I saw him make weird movements when I changed his diaper. Everyone around me thought it was probably normal infant jerks. Being a first time mom, I thought maybe I was being paranoid, but I still called the pediatrician. After being admitted to the hospital, our fears were confirmed...Landon was having seizures. He was started on Trileptal and after a few days sent home. Things didn't seem to progress so we had to return to the hospital and he was put on phenobarbital. After a few weeks of no progess he was taken off the phenobarb and Keppra was added. We continued to see our neurologist each month for the next few months. In December 2009 his seizures changed. He began violent jerks. His body would bend at the center, his arms would fly outward, his legs would pull to his chest, and he would stare. This was a big change from his shaking legs in the beginning. The doctors began adding new medicines including: Keppra, B6, Coenzymated B6, and Lucovorin. I took videos to our appointments, but they never seemed concerned. That is until I showed my pediatrician the video at Landon's 6 month checkup. He was extremely concerned, and had us admitted to the hospital again. He believed Landon could be having Infantile Spasms. After our 4th EEG,he was diagnosed with having Myoclonic Seizures. They have now added Topomax, and Klonopin to his list off many daily medications. They are looking for a cause, but have not been successful yet. Our neurologists are concerned with his development and feel he may be regressing. We are optomistic we will get his seizures under control and continue to progress with his milestones, but sometimes it takes alot to not lose it. We will soon be heading on a 6 hour trip to Philadelphia in hopes that the doctors at Children's will be able to help him. We hope to find other people who can relate, and help us or that we may be able to possibly help your difficult journey. I will add more information about Landon including pictures and videos of his seizures, but this is a quick overview of our little angel.