Pity Parties Can't Last

Yesterday was a hard day on everyone. Marek had his longest cluster of spasms since he had been home and I think everyone was feeling discouraged. It's like we hold our breath between clusters hoping they won't come back, praying and bargaining with God to let him wake up from each nap spasm free and then they come back. It is as if we are being stabbed in the heart each time it happens. We feel so helpless while he is having his spasms. I personally feel like a failure of a parent for not being able to stop this disease from harming my son. However, no matter how beaten down we feel we have to pick ourselves up and move forward. So after some tears, frustrated rants and snuggle time with our peanut we went to bed reminding ourselves that tomorrow is a new day.

Today I met with our coordinator from First Steps. She was very nice and explained the program in great detail. We scheduled a day for the Physical Therapist, Occupational Therapist and Developmental Therapist to come to the house to do an "arena" evaluation on Marek. The coordinator informed me that it would be a month before Marek could start therapies IF he qualified, which she was pretty sure he would. After she left I talked with my mom and we both agreed that waiting a whole month was unacceptable. Babies learn so much in a month and in Marek's case he could potentially LOSE so much in a month. I completely understand that there is a process that First Steps needs to follow and that it takes time for insurance approvals however, given the fact we have been unwillingly participating in the waiting game to see if the medication Marek is on is going to work I couldn't sit back and play the waiting game with therapy.

This afternoon I called almost every pediatric therapy facility in St. Clair county before I found one that would take our insurance and had an opening within a week. Marek is scheduled for OT tomorrow at 2pm and PT Monday at 2pm. Ryan and I feel that the sooner the better when it comes to working on his development. I am looking forward to seeing what we can do to help Marek progress with his development.

After all the therapy appointments were made Marek, my mom and I went on a very VERY quick walk around our neighborhood. It was pretty chilly but Marek loves being outside so we bundled him up and walked fast. He talked and laughed the whole way.

Unfortunately our fun day was interrupted by a spasm cluster that lasted for 20 minutes with over 100 spasms. The last couple of days his seizures seem to be getting longer. He was exhausted afterwards yet he still managed to tell his daddy about his day and give him some smiles.

We finished the day with sweet potatoes, carrots and cereal. We let Marek have some fun and play with his food tonight. He made us laugh all throughout dinner. We love him so much!!