August....ALREADY!?!?!

I can't believe it is already August! 

Marek has had a rough couple of weeks, but this time with "normal" baby issues. I took him to the doctor last Thursday and he was diagnosed with Croup and an ear infection. Ryan and I both got sick after that but all three of us bounced back after a few days. Marek is also cutting two more teeth so that is making him extra crabby these last couple of days, however we absolutely welcome these "normal" baby troubles. I hope and pray that is all we ever have to encounter from here on forward. 

Marek's nutritionist came to the house for her first official visit last week. Since Marek is slowly weaning off many of his medications (we will only be staying on Sabril) the nutritionist felt that Marek would benefit from a detox. She said that this should help rid his body of any remaining side effect from the AEDs that he has been on for the past few months. She said that this should improve his energy level as well as other areas. We have already seen an increase in his energy and its only day 5 of his 15 day detox. He is able to play for longer periods of time and in my opinion, with more strength. Marek is also on supplements for his immune system which I am very happy about since it won't be until December when his immune system is back to full force. And last but not least Marek is on a protein supplement since he hasn't been eating any solids for the last month and a half. This is starting to slowly change for the better as well. With the help of OT Marek has been able to finish one jar of baby food a day, TWO on a really good day. Along with all the supplements, the nutritionist has helped Marek wean off of formula. He took his LAST formula bottle this morning. He is now on only coconut milk since the nutritionist felt that cow's milk is too hard on his GI system. Our peanut's body has been put through so much from all these meds over the last 8 months that anything we can give him to improve his sensitive system the better. 

Marek has been working hard at therapy every week and with his improved energy system it is really nice to watch him "enjoy" playing with his therapists and having fun. The biggest improvement I have seen Marek make is with his fine motor skills. His OT has come up with some very motivating activities to help Marek with his grip strength and with his hand-eye coordination. Last week Marek was able to take all the velcro shapes off the container with BOTH hands and he was able to get all of the small "cat toy" balls out of the dish. This is huge because for the most part Marek just bangs or swats at his toys and occasionally he will reach or grasp for things but I have never seen him focus and use his hands for long periods of time with a purpose. I only wish that we could see these huge gains in PT as well. His gross skills are not moving along as quickly as we would like. His PT did change his stander around so that now Marek stands with his belly forward almost as if he is "falling forward." This is supposed to work the muscles in his back which we hope will make it possible for Marek to transition from the laying down position to sitting and vice versa. 

Marek has his 6 month IFSP review on Thursday this week. This is where all his therapists (OT, PT, DT, Vision, and Nutrition) come together and review his goals that we

made back in February when he started his therapies. If he hasn't mastered a goal then we will roll it over to the next 6 months goals. Any goals that he has mastered will be replaced by new ones that should take him through February 2016. Since his PT won’t be able to make it to the meeting (her daughter is having surgery that day) she has already shared with me that Marek met ALL his PT goals. She said the next 6 months will be dedicated to OPERATION CRAWL.

All of Marek’s therapists do a great job with him, the only downfall to all the therapy that he gets is that he isn’t around other kiddos that much. So Ryan and I decided to sign Marek up at the Little Gym in Edwardsville so that he can socialize with other babies as well as get a “workout” in. Friday was our first session. Marek did great! He did backflips over Mommy, sommersaults down the cheese wedge, he swung on the bars and bounced on the air mat! IM NOT KIDDING he did all these things in one morning. The best part was he was fascinated by all the other kiddos crawling around, babbling and cruising around the gym. I am hoping that by seeing others his own age doing so much he will start to want to become mobile. 

 I can't believe that we have an official date (as long as insurance cooperates) to start Keto. We will be admitted to the hospital August 24th, that will be the day that they do a repeat 24 hour EEG so that they have the most recent baseline of Marek's background activity to compare to as we move forward with Keto. We will be in the hospital for a week while they initiate the diet and monitor how Marek's body responds to it. We are hoping that his will be the final battle we have to endure to get rid of IS forever. 

Ryan and I are so happy that Marek is where he is, we know that things could be so much worse for him and we are so hopeful that he is on the right path to beating this demon. As parents we still feel we are on the roller coaster ride from hell with him. We still have a lot of ups and downs that we encounter. For example, last week we went to take Marek for a bike ride and we thought that since he had been doing so well in the sitting position maybe he could sit in his bike buggy by himself instead of us having to put the carseat in the buggy. Well halfway through the ride Marek was doubled over with his head almost hitting his lap and the straps were rubbing against his shoulders so much that he had huge red marks. Of course we were not anywhere near our house so all we could do is lay marek down in the back of the buggy (with no seatbelt on) and peddle slowly back to the house. That night led to many tears and feelings of defeat. It’s little things like that these that tend to set Ryan and I over the edge but we know that we have to keep moving forward and wake up each day with an attitude that Marek will be strong enough to do these things some day. So yes, this roller coaster ride SUCKS and the ups and downs are rough but right now we are hoping that all the steep drops and corkscrew turns are behind us. One day this ride will come to a screeching halt and our feet will be safely

back on the ground.