Decision Made

After a long night of weighing our options we have decided to go with ATCH. Watching Marek have a 31 minute seizure this morning with over 200 spasms just confirmed our decision. If we really want him to have the best possible future we have to be aggressive with the treatment. Although the next six weeks will be even more stressful and scarier than the first part of our journey I am staying hopeful and praying it will get us to our seizure free destination.

We informed the doctors of our decision and they told us they were still waiting for insurance to approve everything. They are thinking that tomorrow we can start the medication. Our nurse came in to help Ryan and I start learning how to give our little man the injections. She brought the needles, syringes, alcohol and two oranges to practice on. It was a little overwhelming making sure measurements were correct, no air bubbles in the syringes and that everything was sterile...and that was before we even practiced giving the actual injections to our oranges. Although my hand was shaking and I was scared for my little orange our nurse gave both of us A's for our first run through. If I was that nervous practicing on an orange I can't imagine what I will be like when I have to give Marek the ACTH. We also learned how to take blood pressure since Marek's blood pressure will be checked three times a week. It took us a few tries but I think we have it now. I needed a little more practice than Ryan so my mom lent me her arm. Thanks Mom, hope it isn't too bruised! We also found out that insurance approved a home healthcare nurse to come to our home during the treatment of ACTH to help monitor his health.

The doctors finally gave us the results to the EEG. They told us there wasn't any change to the hypsarrythmia. We were sort of expecting that news since Marek is still having clusters of spasms. They told us that the Vigabatrin might be the reason why Marek is developing however, we really won't know that for a fact until we see how he does over the next three weeks as the doctors wean him off of it.

Marek turned 6 months old last week and unfortunately we have been so consumed with infantile spasms and everything that accompanies the diagnosis that we have had little time to focus on the little things. I have always taken his monthly pictures in our lazy boy and with things being so chaotic I neglected to do that. I don't want to look back years from now after this storm has passed (WHICH IT WILL!!!!) and have an empty month in his album. I think I have been so worried, concerned, sad, and upset to try to do anything "normal" with peanut. But I don't want my emotional roller coaster to ever effect him or ever take anything away from him. He deserves the world. Therefore, my mom brought up his monthly board and we took his six month picture here at the hospital. Mighty Man even wore his cape for his photo shoot.

Ryan and I have been overwhelmed by how much support, concern and love everyone is showing Marek. We were brought to tears today by how much everyone is willing to help us. THANK YOU! Those words don't even come close to being able to express the gratitude and appreciation we feel towards our family and friends.

So as of now, tomorrow is our big day to start Marek on his MIRACLE DRUG. We have to believe that this will be the fix for our little man.