Still holding our breath, waiting, hoping and praying.

Still holding our breath, waiting, hoping and praying.

On Thursday, Ryan came home to stay with us until Sunday. It is so nice to have him here, especially at night. I needed a new shoulder to cry on, my mom's needed a rest. Marek is also enjoying having his daddy back. Marek loves to cuddle with me and I seem to be the only person that can calm him down when he gets into his crying fits but his daddy is the one that can get him to belly laugh. It was so comforting to hear that again.

Marek is starting to "fill out" due to the steroids. His appetite has increased and his little cheeks are starting to bulk up. Last time the nurse weighed him he was 21 pounds. He is in 18 month clothes right now because of his "little" tummy being too big to zip up some of his 12 month sleepers. Even extra chubby he is still the cutest peanut I have ever seen.

Thursday night our priest came over in the evening to pray with us and to perform the anointing of the sick. It was very emotional for all of us. I wish I could have screamed our prayers because maybe God would have heard us a little better. Father said he would pray for Marek in each of the masses this weekend. We are hoping maybe with a few more people on board praying we can tip the scale in the right direction, who knows?

Marek sleeps from 9pm-12am and then is up from 12am-6am every night. I usually take the over night hours and then my mom takes over at 6am so that I can catch up on sleep in the morning. On Friday, after a long night up with him, our nurse came over around 8:45am. I thought that it would be just a normal visit and I could go back to bed. WRONG! She took his temperature and he was running a fever. My greatest fear, besides not having the spasms stop with this medicine, is that he becomes sick and can't fight his infection since he is immune suppressed. I called Children's Hospital and talked to our neurologist who made me feel a little better. He didn't want to admit us to the hospital since it is a germ factory so he told us to monitor the fever here at home. He told us not to administer Tylenol so that we could get an accurate reading and nothing would be masking his temperature. We are continuing to take his temperature every four hours. Luckily it hasn't increased at all so we have been able to stay in the safety of our own home.

Last night Ryan and I took the night shift together and I was so happy he was here because Marek had his longest seizure to date. After an hour of watching our poor baby having spasms Ryan called Children's Hospital to see what we should do. They told us that there was nothing they could do to help him. Infantile Spasms seizures do not respond to emergency anti-convulsant medicine. The on-call neurologist told us to just watch him and wait it out with him. I am SICK OF WAITING AND WATCHING! We want to help our son! We want the doctors to have an answer for us and a foolproof plan that will give us the results we so desperately earn for. IS THAT TOO MUCH TO ASK? Marek was so exhausted from his seizure that his eyes were closed and he would try to go to sleep but then he would have a spasms and his eyes would pop open and his body would jerk. And of course we just sat there and watched. It makes me sick. After 1 hour and 17 minutes his seizure finally stopped. He had a bottle and then went to sleep.

It is getting harder and harder each day. Today is day 8 of being on ACTH and still he is having seizures...HOUR LONG SEIZURES. It is discouraging and I get angrier and angrier each time it happens. I think days like today are probably the hardest. Everyone I am sure is excited that it will be a beautiful, warm sunny day out, but I don't like the sun right now. It doesn't match the situation we are in. It should be overcast, stormy and freezing cold. I hate that life just goes on all around us while we are stuck in this horrible hell hole. Like many, I used to scroll through my Facebook newsfeed to catch up on what everyone else was doing but I can't bring myself do to that. I hate seeing everyone's pictures of their perfectly normal healthy kids, hearing about wonderful news going on in their lives or even more upsetting people ranting on Facebook about trivial matters. Instead, I go on to Facebook to visit the Infantile Spasms support groups because people posting on there are currently in or once were in the same horrible hell hole as us. I know life goes on outside of our home, but right now I don't want any part of it.

Although I am in a really crappy mode today and don't want much to do with anyone I am very thankful for everyone's support, love and prayers. We have had wonderful little surprises show up at our front door every day (Thank you Snodgrass Family), my sister has come to visit through the window and run countless errands for us (Thanks Sis), we have had food made for us and dropped off by so many people (Thank you ALL). Our families have been amazing through all of this, we have the best parents in the world!