Day 21 of ACTH

I think I can finally write a post to update everyone on Marek's fight. It has been too hard for me to sit down and put into words that things haven't been the best. Just thinking about things brings me to tears. Anger, frustration, sadness, helplessness, fear exhaustion are just a few of the emotions that overwhelm our family every day. Although it is hard for me to share Marek's journey at times I know that I have to. I have to because for one, so many friends and family are sending their love, prayers and support to Marek and we know they are traveling right along with us on this journey and I don't want to keep them in the dark. And secondly I want this blog to help spread awareness of Infantile Spasms and hopefully help other families that are suffering from this ugly diagnosis.

Let me back up to this weekend. On Friday Marek started a new drug called Onfi. He was on 1 ml once a day and as of yesterday he has gone up to 2 ml a day. His side effect have been pretty mild on this drug. He is drooling a ton and he is "out of it" a lot of the time but other than that he has tolerated it pretty well.

My mother-in-law came over Friday night to help Ryan watch Marek overnight. Marek was happy to see his Gigi. By Carol coming over, my mom and I were able to finally catch up on some sleep. Marek kept his daddy and Gigi busy from 2am until 8am. They spent some quality time in the bathroom while Marek played in the tub and in the car driving around to keep Marek calm. My mom and I are so thankful to had a night to "recharge."

Saturday we received a letter from our insurance company that is still making my blood boil. They told us that they denied our claim for all therapies for Marek because his "prognosis and/or history does not show reasonable chance of developmental progress."

Dear Mr. Big Shot Medical Director (who by the way is NOT a neurologist, pediatrician or epileptologist) you have no idea what my child is capable of and we don't appreciate you telling us that their isn't hope for his future. Marek is one tough little boy and will do amazing things in his life. He will have to work twice as hard as many of his peers but with therapy (even without the assistance of insurance) he will get over all the hurdles standing in his way. 

I wanted to immediately drive to his office after reading that letter but not only could I not find where he was located I couldn't even get a hold of him. What is even more frustrating is neither could our Neurologist (who laughed when reading the denial), our pediatrician nor our therapist.

Monday was exciting because we got to spend an extra day with Ryan due to the weather. Marek was very happy about this and showed it through many smiles and small belly laughs that day. We also were given the go ahead by our Neurologist to keep Marek at a high dose of ACTH until tomorrow. We wanted to make sure that we did everything we could while on the ACTH to help him. Unfortunately, it hasn't helped. Marek is still having spasms. Thankfully he is not having as many as he was before ACTH but the medicine hasn't done what it should. It is scary to think that the most powerful steroid out there wasn't able to help our son, this was the #1 drug at fighting IS and our son isn't responding to it. I don't understand, I never will. I ask myself every day, "why Marek?"

Wednesday we had Marek's first physical therapy session with Patti. We absolutely love her. We feel so blessed that she was the one chosen to work with Marek. She was scheduled for an hour and stayed for almost three hours. She brought us a bunch of equipment that we get to keep here at our home so we can work with Marek during his "good times." Marek did a great job at therapy. I honestly thought it was going to be a disaster since therapy was scheduled at 8:30 am and he had been up almost the entire night, but he was a trooper. She showed us many sensory exercises to do with him to calm him down. These sensory exercises allows him to get the most out of his strength exercises since he isn't crying or fighting us. Patti has also been amazing with going above and beyond to fight our insurance company. We can't thank her enough.

Today, we had an appointment with the eye doctor. During our first hospital stay they did an eye exam on Marek and said that one of his nerves in his eye seemed slightly smaller than it should have been. They weren't sure then if it was going to cause issues for him or if it was just a stage of development and it would grow with time. Therefore, they scheduled his appointment for today to check the development of his nerve. During Marek's first steps evaluation the therapists kept mentioning that they thought he had vision problems. I have started to think that his vision problems were being caused by this small nerve. After the eye exam today we found out that Marek's eyes are perfect, the doctor didn't notice anything wrong with his nerve this time. However, he did diagnose Marek with Cortical Vision Impairment. What this means is that his eyes can see perfectly fine but when images are transferred to the brain, his brain is having a hard time deciphering what they are because of all the seizures. So Marek isn't "seeing" or "tracking" things as he should be at his age. The doctor said that if we can get the spasms to stop there is a good chance that his vision can go back to normal. PLEASE LET THESE SEIZURES STOP!

We will have to make a lot of decision this week on where we should go from here as far as treatment goes. Everyone's continuous prayers are appreciated. I wish I knew why God is letting these spasms continue to hurt our child, sadly I know that question will never be answered. I can just hope and pray that he allows something to help our son in the near future.