The Waiting Game

What has been happening since we have been home?

Marek continued to take 250 mg of Vigabatrin twice a day from Wednesday to Saturday. Since we didn't see any decrease in seizures we increased his dosage to 500 mg twice a day on Saturday. The medicine is basically a crushed up pill that we dissolve in water. In simple terms it is chalking pill water that he has to take and he HATES it, but we get through it each day and reward him with a big bottle of formula.

On Monday, January 19th I was able to talk to the Neurologist again. I explained to him that we still were not seeing any decrease in seizures. He asked how Marek's mood was, how awake he was during the day and how his "play" was. I told him that other than the seizures he is a very happy, playful little boy. With Infantile Spasms, the longer the seizures continue the higher the risk that the child will start to regress with their developmental skills so we are keeping a close eye on Marek's babbling, smiling and play. The doctor decided to increase his dose one more time to 750 mg twice a day on Monday (he is now on the max dosage given his size). We are to continue to wait and observe him until Friday when I check back in with the neurologist.

On Monday we went and had Marek's blood drawn for a Renal Panel and to check his Bicarbs. He is such a tough little man. He didn't cry, whimper or flinch when they took his blood. He was rewarded with a trip to Toys R Us where my mom and I bought him new toys, a play mat and a new sitting chair that we can help work with him as we try to get him where he needs to be developmentally.

Ryan went back to work on Monday as well. It was so hard for him to be away from Marek. I try to keep him updated throughout the day. We are lucky he works close enough he can come home from work at lunch time to check in on the little guy. I have taken a medical leave from work so I can monitor Marek and hopefully start therapy exercises with him. Tomorrow the coordinator from First Steps is coming to our home to start the paperwork for all Marek's therapies. (Physical Therapy, Occupational Therapy and Speech). My hope is that we can start therapy as soon as possible and it won't be a long drawn out paper trail to get things started.

Once again thank you to everyone who has brought us dinners, sent us gift cards, stopped by to spend time with Marek and to all who are constantly praying and sending their love Marek's way. We are taking it one day at a time.