Easy as pie...or cake

Last week Sunday, we celebrated my birthday. This was Marek's favorite part of the weekend because he was able to eat cake! He loved it! Birthdays are that much more special now that I am celebrating them as a Mommy!  I loved watching how FAST he ate the frosting. We figured that we better let him enjoy cake now because if he is on the Ketogenic diet for his first birthday, cake won't be on the menu. It was a great night, however the nurse wasn't too happy Monday morning when his glucose level was high but after explaining that cake was the reason she wasn't as worried.

Monday, the Neurologist called me to tell us he had the final report from the EEG. He gave us great news that he does not have hypsarrythmia anymore. He has what they call Epileptic Encephalopathy which means he still has a chaotic and unorganized EEG but is less severe than hypsarrythmia. Encephalopathy still causes problems of cognitive development but at a less catastrophic level than hypsarrythmia. Marek has still had spasms this week and unfortunately on top of this the Neurologist now thinks that he might be having other seizure types. We started seeing him do different movements the last couple weeks but were unsure what to think of it. I finally caught it on video and sent it to the Neurologist. After reviewing the video the neurologist feels that this type of movement is seizure activity not spasm activity. The doctors won't know this for sure until these movements are captured during an EEG. Depending on what type of seizure they diagnose him with will depend on what anti-epileptic medicine we add to our fight. We are still unsure what treatment plan for IS we will do next. The doctors really want to wait until the last day of ACTH to make that decision. We could do Prednisolone (oral steroid) Zonegran/Topamax (anti-epileptic drug for IS) or the Ketogenic diet.

This past Tuesday, we went to get Marek's vision checked. He had an eye exam last month which showed that his actual eye was healthy but he was still having trouble with his vision (the problem lies with how the brain receives the image and deciphers it) which got him the diagnosis Cortical Vision Impairment. The eye doctor wanted to measure how impaired his vision was so he scheduled the eye appointment that we went to on Tuesday. They hooked Marek up to a few leads, the same ones they use during an EEG so that they can measure how fast images are received in his brain and how much activity is going on in the Occipital lobe of his brain. He got to wear a pirate patch and all! He did a great job watching all the lights and trying to follow the objects. We will get the results in the next two weeks.

On Monday, March 23rd we will be going to get blood work done at Children's. The first set of blood workup will be for the Ketogenic diet to assess if he is a candidate of the diet. The second workup will be for genetic testing. It has taken over a month to get insurance to approve this testing.  Infantile Spasms is sometimes caused by a mutation of a gene. We are keeping our fingers crossed that the genetic testing comes back normal. Please pray for good results for Marek.

Occupational therapy came for the first time Tuesday. We didn't get much accomplished because Marek was so upset. Marek is still having a hard time on the wean. We are now at the lowest dose amount twice a day, then we step down to once a day, then to every other day. His last injection is a week from Sunday. I am hoping that as the steroids get out of his system that #1 HE DOESN'T INCREASE SPASMS and #2 we quickly get rid of the irritability. Our little guy is just miserable.

At the end of last weekend, Marek cut his first tooth. We have thought that Marek has been teething for months now but we never saw or felt anything. On Saturday night,  last week we felt his lower right tooth. Our poor guy is so tough, he is fighting so hard to beat IS and is now OFFICIALLY teething.

Physical therapy has been going well. Patti his PT was very pleased by everything he was able to do this week. Marek has graduated OFF the wedge since he can now pick his head up off the ground. We are now working on having him push up to a sitting position. The PT thought that his back and left side were getting tight so we will be stretching a lot this week and really working on his tummy muscles.

Ryan attended the church service that was put on for Marek. He said it was very moving and emotional. We thank everyone that came out to pray for our peanut at church and like always we thank everyone that has continued to pray at home.

Drum roll please................. We have reached our first MILESTONE. Marek can now roll tummy to back and back to tummy. We have noticed with Marek that if he can do something once, HE HAS GOT IT! He is rolling over like crazy, easy as pie! So proud of our Mighty Man. He is a fighter and won't let anything stop him!