Holiday Season

We are hoping that all our friends and family had a great Thanksgiving and are excited to celebrate the next holiday. If you are like us I am sure you are busy running around and wondering why the "25 Days to Christmas Countdown" goes faster than the "10 Second Countdown to New Year's".  We have enjoyed doing holiday activities with Marek and watching him become interested in things kids should be interested in. He loves all the neat holiday themed crafts that his therapists have been bringing over, we took him to the Shrine and he loved looking at all the lights (he also enjoyed turning the radio station since we let him sit in the front seat while we drove through), we have seen Santa three times and he has only cried once and he especially loves playing with the wrapping paper/stickers/boxes while Ryan and I wrap gifts. Although our "normal" is a little different this holiday season we love it and APPRECIATE it so much.

A few updates on our little man:
We got the final results for our genetic testing and they came back normal. Marek is a carrier for Krabbe disease but so is 1 out of 150 males. They told us that every year they will re-run Marek's blood through the genetic testing bank to see if anything new comes up. This is because they find over 30 new functions to genes every year and there might be a time in the future that we know what caused Marek's IS but right now its not important. What's important is helping our little guy get stronger and help him learn strategies that will ease his frustrations. We are also very thankful that Marek's wean off Sabril is going well. Every day that Marek is seizure free is a miracle in our book. We are down to 12 mLs twice a day, we will drop down again after the beginning of the year. Although the doctors fight us on our theory, we strongly believe that the Sabril is one factor contributing to Marek's delays. Every time we lower the dose its like another light turns on in Marek's brain, he has become more alert, active and interested since starting the wean. We hope and pray this continues!!

Marek had his first "wellness check up" since he was 4 months old. He is 25lbs and 32 1/2 inches tall, putting him in the 75th percentile. Hey we are just happy is on the chart again! He received his first vaccine (MMR) since his diagnosis. He wasn't allowed to receive any vaccines until we were 6 months post steroids since he was still considered to have a suppressed immune system this whole time. The best part of the visit was that he has PERFECT EARS!!! We are so glad that the tubes are doing their job and keeping our little man free of ear infections.

We have finally decided on childcare for Marek since I have to go back to work in January. We are very fortunate that Marek will only have to go to childcare half the week since my sister will be watching him the other half of the week. This will allow the majority of his therapists to continue seeing him in our home and more importantly my sister will be able to videotape sessions so that Ryan and I will know how to continue helping Marek when we get home from work. We are doing a few practice runs at daycare before I go back to work. Marek will go for the first time on Monday and you better believe my nose will be pressed against the window glass all day watching. Our thought is that hopefully Marek being around other kids will help motivate him to become mobile and help him move forward in his development.

Speaking of development, words cannot describe how proud we both are of Marek. Every day he tries so hard!!!. He has overcome so much this year and his strength and determination is unbelievable. He is trying to get in and out of a sitting position, he is so close to signing "more", he is able to put object "in" (which is HUGE...we have been working on this one for a long time), he responds to his name now and he is showing progress on the army crawling front (which is the ONLY thing Mommy and Daddy want for Christmas).

Once again we want to thank everyone for all your love and support this year. Please continue to pray for our Mighty Man!

We wish everyone a very Merry Christmas and a Happy New Year (Good bye 2015!!!!!!!!!!!!!!!!!!)