Golfing, Chili and Fort Wayne Fun

First off, I want to say THANK YOU to Scott Hopfinger and all of the planning committee for an AMAZING job with the golf tournament. It was put together perfectly! THANK YOU to everyone who came out to play, donated, sponsored and supported Marek. We felt so loved being in the same room with everyone that has been behind Marek for the last ten months. Each and everyone of you make our journey so much easier and our dark days so much brighter so thank you for sharing so much of your love and time with our little man. 

Last weekend Marek enjoyed going to his second Chili Cook Off. He liked it so much better this year since he was able to finally sample the chili. We enjoyed seeing Nana and Papa and Aunt Lynn and Uncle Bob. Marek also enjoyed seeing all his little friends downtown.

Marek and I are in Fort Wayne, Indiana right now so that Marek can receive ABM therapy. We drove up here on Sunday. Typically, Marek is a great traveler in the car but of course this time he was determined to make a 5 hour car ride turn into a 6 1/2 hour car ride. We had to stop multiple times for food, drinks, medicine, and to put his binky back in his mouth. Although I was very frustrated with having to stop so often I did have to laugh because he would scream his little butt off until I would open his car door and then each time he would start giggling…I love that little stinker. 

We decided to pursue ABM therapy for two reasons. One was because Marek was screaming through each traditional therapy session and for two his development has stalled the last few months. He has done three lessons so far with his ABM therapist and hasn’t cried a tear plus it seems he is starting to connect more with what his therapist is asking him to do. We are still here for two more days and I am anxious to see what he will be able to do at the end of the week. Last night we ate dinner with Tanya and her son Kannon. We met the two of them through our support group for Infantile Spasms, Kannon is fighting the same battle as Marek. The boys loved playing together and I so enjoyed talking with Tanya since we have been living in the same “world”. We talked about therapies, medications and just life with the boys in general. It was a great evening.

Happy 14 Months Mighty Man

Wow this month is just flying by! I can’t believe it has been three weeks since I have posted an update. 

I don’t even know where to begin.

Marek has been a very VERY busy little boy. We have added even more therapies to his schedule to help him move along in his development. He is now receiving speech therapy through Early Interventions. He will be getting speech therapy two times a month. We also have AMAZING friends who love Marek and have been willing to take time out of their day to help Marek out. Kari Lane and her cousin Katie Speichinger are such wonderful people and have started to co-treat Marek on Wednesday nights. Kari is a Speech Therapist and Katie is an Occupational Therapist. He had his first sessions with them this last Wednesday and loved it. They worked on saying and signing “more”. Marek was on cloud nine since he was rewarded with food!!! I’m telling you the kid can EAT! 

 We have also started ABM therapy here in St Louis and will also be traveling to Fort Wayne, Indiana to see another ABM therapist. I have had many people ask what ABM therapy is so I included a link to a video to help explain it. We have been at a stand still with Marek using his arms so we have been thinking outside the box to see if other forms of treatment might help make things click for him. He is also going to see a chiropractor next week as well as a nutritional counselor since I haven’t been overly excited with his nutritionist he has been seeing through Early Intervention.

Lastly, Marek has started Music Therapy on Saturday mornings over in St. Louis. This program is offered through his vision service, Delta Gamma. We went to our first session yesterday and I was amazed at how interest and MOTIVATED Marek was during his time there. The kids worked on body part recognition and turn taking and this was all taught through song. Mark’s favorite part was when his teacher handed out the instruments so the kids could play along. 

Needless to say Marek AND MOMMY are quite tired when the week ends, but I wouldn’t have it any other way. I am hoping that things will start clicking for him soon and he can start putting all these different therapies together to help move him forward in his development.

Since the lovely state of Illinois is struggling so much financially we have been pushing for our insurance to pick up Marek’s orthotics. We finally got approval so Marek will be going to get casted for his orthotics on Thursday. I think this will really help because right now he loves to stand with support but his ankles just roll outward so much that it makes it hard for him to stand for long periods of time. Speaking of the lovely state of Illinois, for those of you not on Facebook, last week was pretty hard on us. Our PT who we love so much gave us her 30 day notice telling us she can no longer see Marek since his Early Intervention is through the state. The state has not paid their Early Intervention therapists since June. I can’t blame our PT, she had been seeing Marek for four months without seeing a penny. Beside myself, I posted on Facebook asking friends and family to please call their local representatives and our governor to push for EI funding. The next day was also a state wide call in day which greatly helped get the message to our government. It was posted that every representative’s mailbox was full across the state. WOW!!! That afternoon the comptroller’s office put out a letter that said that they will start funding EI ASAP. Our PT sent me a message last night saying she is optimistic that she will be able to continue to see Marek. I am hoping that money is dispersed quickly!!!! THANK YOU to everyone that took the time to call in, write emails, and help spread the word, Marek and every child who receives EI is grateful!

Ryan had been traveling for work the last two weeks. He was working down in Arkansas and this was his first weekend back. He will be starting back to work Monday in his OWN local, woohoo. I am so glad he is back. I loved all my one on one time with my little guy but it was a lot of work and I am glad Ryan is back to help out. I have to thank my little sis once again for keeping me company and helping out with Marek while Ryan was gone. We spent this weekend as a family at Eckert's and downtown Belleville at their Oktoberfest. It was great being THREE again. 

Last but not least, HAPPY 14 MONTHS to Mighty Man Marek. Keep fighting little buddy, each battle you win gets you closer to winning this war.

EEG Results

Last weekend Marek started having what we were calling “head drops.” While he was playing all of a sudden he would drop his head to the right as if his neck muscles just gave out. We know that spasms sometimes present as head drops so we video taped the movement and sent it to Marek’s neurologist asking if he thought it could be seizures. He told us that he would like to run a 45 minute EEG to see what is going on. So last Thursday we went to Children’s at 7:00 am for an EEG. 

Our Neuro called us and told us that the movements were NOT seizures which is outstanding news! Marek is still seizure free!!! His neurologist did tell us that Marek’s EEG looks very similar to the EEG he had done in Detroit, they didn’t see any spiking this time however, they did notice that he had slower than age appropriate brain waves. We are unsure at this time what this means. We are waiting for an epileptologist to read his EEG. We don’t know what is causing these slow brain waves, whether it is a result of having Hypsarrythmia, a side effect of all the anti-epileptic drugs Marek has been or the fact that he is still delayed and is playing catch up developmentally. We are hoping that will have answers for us soon. 

The important thing is Marek is NOT having seizures and that he is still making advances each day in his development. The doctors are not going to make any changes at this time to his treatment so we are thinking that this new finding isn’t an urgent matter. 

Thank you for everyone who sent extra prayers that day for our mighty man. They were ANSWERED!!

Keto Cancelled

Oh man what a crazy couple of days. 

On Thursday Ryan was on the phone with one of the parents we met in the hospital who has a daughter that is on Keto, so he was talking to him about tips and hardships of the diet. As he was talking, my phone rang and it was Marek’s neurologist from St. Louis. He started the conversation by saying that all his doctors at St. Louis (his neurologist, epileptologist and the head of Keto) have been discussing Marek’s case and they are not 100% sure that Keto is the next step we should take. But in the same breath he said that the have never had a case like Marek’s so we would do Keto and see how it works with a child like Marek. My jaw hit the ground. I was so confused since two weeks ago we were at the doctors office in a room with all three of them and they were 100% for the diet. So when did this thought pop into their head that maybe Keto wasn’t the best idea and why are they letting me know LAST MINUTE!??!

Our choices were as follows:

Option A - Start the diet which comes with its own risks (kidney stones, acidosis, cholesterol problems, GI issues etc) and then if Marek seems to be handling the diet okay in a month or two we can start weaning Sabril.

***This is what we thought was the plan all along. However, while talking to his doctor he said the reason why they are not sure about the diet is because A. Marek is doing so well and “if it’s not broken don’t fix it.” And our wish to get him off the medicine as soon as possible did’t seem so “safe” after the doctor told us that Sabril is much more effective than the diet at keeping seizures away so even if we had the diet under us while weaning Marek off of Sabril in a month there was a possibility the the seizures could come back. For those wondering why we would want him off of Sabril, the drug is known to cause developmental delays so we know he already has an uphill battle with his development because the damage the seizures did plus all the steroids we didn’t want him to have to work even harder to reach his milestones. BUT, nothing, NOTHING is worse than having the seizures come back so we listened to option B.

Option B - We “stay the course”. Marek will remain on the same dose of Sabril until December (which seems soooooo far away) and at that point we will see if he needs a “maintenance medication” as we slowly start to wean Sabril. This is all dependent on the fact he remains seizure free. If the seizures come back there only one game plan, and that’s Keto. 

As I was getting off the phone with the doctors at 4:30 pm he told me that the decision was completely up to us and that they will support us (but not guide us) either way we choose and the kicker….he needed our decision by the next morning. 

SERIOUSLY. Let me use my doctor degree and decide my child’s medical future in a few hours. My blood was boiling. I relayed the message to Ryan which led to a night of emotional discussions. We really felt like it was a coin toss and that either way there are negatives and positives. Our stress level was at a 10. Every time we thought we had our decision made one of us would bring up another point and we would be back in the middle again. I was so angry that us, as parents, had to make this decision. Yes, I want to be a part of every decision made on my son’s behalf but I want the doctors to be confident in the choices they put before us. I didn’t feel that they were confident in starting Keto. 

After a night of back and forth, and a few margaritas to settle our nerves. We decided that if there wasn’t an overwhelming chance that Keto was to be our magical cure, then we weren’t going to put our son through it. So as of now we are “staying the course” and hoping that Marek continues to make strides in his development and the icky seizure monsters stay away…FOREVER!

Countdown to Keto

Marek only has a few days left to enjoy all the food goodies he wants. He has had pancakes with syrup, ice cream, donuts and much more. He loves food now and It’s going to be hard sticking to the strict diet, but that’s what needs to be done. We have been trying to gather everything we need for the diet before we get admitted on Monday. Since the slightest changes in carbs/sugars can mess with how successful the diet is we have to change Marek’s shampoo, lotion, sunscreen, bug spray and hand sanitizer. We also have to change all Marek’s medicine to the pill form so that we can crush them and dilute them in water since many liquid medicines have high contents of sugar. We have bought special bibs, containers and spatulas so that we can get every little drop of food out of the containers and are able to capture any food that spills and get it into Marek’s mouth. Strict, Strict, Strict! Lots of changes to be made! Marek has been extra crabby these last few days so we took him to the doctor today and sure enough his ear infection that he has two week ago is still there. So he was  prescribed a stronger medicine (in pill form of course) and our fingers are crossed that it gets cleared up quickly. 

Marek was evaluated for Speech on Monday. We have not heard whether he qualified yet (but we are expecting that he did). We should hear by the end of next week. I was pleased with the evaluation. Its hard when a therapist only gets a 45 minute snap shot of what your child can or cannot do. I would say overall Marek demonstrated all his strengths. 

 Operation crawl is off to a slow start. Marek HATES putting weight on his hands so we have a lot of meltdowns that happen during therapy these days. It is frustrating for everyone because these are skills that come “naturally” to babies so it is difficult to teach skills that should practically be “reflexes” like if you were to fall you put your hands down.

I am happy that Marek will have “two full time therapists” (Mom and Dad) at home for a few weeks. Ryan, unfortunately, got laid off last Friday. We are hoping he isn’t off for that long. We are taking full advantage though of having him home and making Marek work twice as hard. It is nice having a second set of hands for all the therapy exercises. Although crawling is off to a slow start, Marek did accomplish a milestone today. HE FED HIMSELF for the first time. We are so excited! GOOOO MAREK!!!

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.

Happy 1st Birthday

Dear Marek,

Wow, one year old! Happy first birthday my sweet boy. This last year has been filled with the happiest and scariest days of our lives. The happiest day of our life was exactly 365 days ago at 5:54 am when you came into this world. I have never cried so many tears of joy, you were the most precious little thing that God has ever made and you were all ours. I pictured in my mind, as I held you those first days of your life, how your first year would be. I could see your Daddy and I teaching you so many things about this world. I pictured celebrating you crawling, your first words and maybe even your first steps by your first birthday. This year has gone so differently than I could have ever thought it could. With all my tears of joy that I cried this year I have also cried many tears of sorrow and fear. When you were diagnosed with IS our world was literally turned upside down. It has taken so much away from you and our family. It has left us holding our breath from seizure to seizure, it has left us fearful of what tomorrow holds and it has made you struggle which is the hardest thing to bear as parents.

It has also changed our lives in a positive way. I never thought while holding you those first few days that in the next year it would not be your Daddy and I teaching you everything but rather you teaching us things about life that we never understood. Marek you have taught us so much. You have taught us to never take ANYTHING for granted, that every day is a gift and we should take full advantage of every minute. You have taught us how to be strong, brave and resilient. You have taught us how to notice the small things and to celebrate each little thing in our life and to be thankful for them. You have given us more laughter and joy through these tough seven months than I have ever experienced in my lifetime. We love you more and more each minute of every day and we are SO PROUD of all you have overcome. You have faced an evil demon this year, one that has tried to take everything from you, but you haven’t let it. You are a fighter, a brave, strong and determined fighter and you will win this fight.

Your daddy and I have been trying to think for weeks now what would be the perfect gift for you. It is hard because the one gift that we would love to give you isn’t possible. If we could take away your hardships we would in an instant. We promise that we will be beside you every step of this journey. We will push you to reach your potential, because sweet baby you have so much potential and one day you will move mountains. We promise to fight for you against anyone who stands in your way on your road  to greatness, whether it be doctors, insurance companies or therapists we promise that NO ONE will hold you back. We promise to NEVER take anything for granted and to celebrate every inchstone you reach like most parents would celebrate first steps or high school graduations. 

It is hard to believe that you are one today. On one hand this year has gone by so fast, on the other it has moved so slow that I could hear the second hand as it hit each of its sixty marks. I hear a lot of parents say that their babies are growing up so fast. I can’t say that this year because part of me is still stuck in the beginning of January when you were five months old before this storm rolled over us. I hope and pray with every ounce of my heart that your next year of life will be easier than your first. You have endured more during your first year than most do in a lifetime and you deserve a year to just be a kid. I am hopeful that this year brings an end to all the medication your have been on that has blanketed your personality. Although we get short periods where your personality shines through the fog of medication I truly feel that it has been many months since we have seen the real Marek. I hope that your struggles become smaller and smaller and that one day this will all be behind you. I pray that this next year is the start of seizure freedom for the rest of your life that you get to take back all that was taken from you.

Marek David we love you to the moon and back. Happy first birthday peanut!!