Regained Milestones and Memorial Weekend Fun

Marek has been working hard this last week. We have been adjusting to my mom being gone and trying to figure out sleeping arrangements. As of now Ryan stays up until midnight with Marek and then I take over until the morning. He hasn't been sleeping any better but our fingers are crossed that this will change when we get off steroids. We dropped his dose of Prednisolone on Sunday to the lowest dose it has ever been. We are also suppose to be weaning off Topamax as well, but I haven't worked up the courage to start taking him off of it yet. Something in my gut has told me to wait a little longer before starting the wean. I am just scared that weaning off two medications at the same time would be too much for him. I am sure the doctor will be thrilled to hear that I have held off on this.



Marek went 6 days without a seizure, but unfortunately had a 27 minute cluster Tuesday afternoon. Since last time he went 12 days without a seizure we are a little nervous that they might becoming more frequent. His neurologist will be upping his dose of Sabril on Monday so we are hoping that he doesn't have any more before then.

Since Marek had his 24hr EEG last week we had to cancel OT and PT. His OT is out of town this week so he only had PT this week. His therapist is just amazing. Marek needs a stander and since our insurance continues to deny therapy the state is now covering services. The downfall of this is that everything moves at a snails pace when trying to get equipment. So we will be waiting for the state to approve our request for a stander and send it out to us. We have heard that it could take months!!! However, since we have such an out standing PT she has been able to find a demo stander that Marek was able to get on Wednesday!!! We just have to wait for him to get fitted for it before we start using it.




We have been working on getting Marek to roll from back to tummy for the past few weeks. Tuesday night while doing dishes Ryan came in the kitchen and told me he left Marek on his back and he turned over to his stomach. I didn't believe him, and since Marek didn't do it again all night I dismissed it. Mom and I FaceTime every morning and while on the phone with her Wednesday Marek finally rolled over back to tummy and has been doing it non stop over the past 48 hours! Now we have to start working on his sitting because he has forgotten how to do this. Therapy yesterday helped and his PT gave us a bunch of exercises we can do to help regain this skill.



Marek went to his first Cardinals game Wednesday night (Thanks Mom and Dad). He was the best baby ever and  caught a foul ball on the first pitch of the game. He stayed awake for the whole game, which Ryan and I were super excited for since we figured he would sleep for a long period of time once we put him down for the night.....WRONG! He slept for 45 minutes.

I called the hospital on Friday to see if Marek's ERG (Retina) results were back yet and the nurse informed me that his test has not been finalized by an ophthamologist yet but the preliminary results are normal. We will have the final results some time next week. Ryan and I are still waiting for our Chromosome test to come back.

Results for the 24 Hour EEG

Marek did great during the EEG. He fussed while they put his leads on but once his little hat was on he was the best baby. As soon as he was hooked up he started to have the little "seizure like" spells that we had been constantly seeing at home. We were surprised at how many he was actually having. Every time we saw him do something that we thought could be a seizure we were told to press a button that would mark the EEG with a timestamp and then the Epileptogist would be able to review it. We pressed the button 15 times in the first two hours. I guess at home we haven't been counting the amount of time we see things so it was kinda scary to see these strange movments so many times in a short period because we were told they were probably spasms by Mareks doctor when we sent him a video. 

It has been 12 days since we saw the last "typical cluster of spasms". I think Ryan and I were starting to believe that the third time of reaching seizure freedom would be the charm. Every doctor, nurse and tech that came in yesterday asked us when was the last time we saw a cluster, and I would reply with 12 days ago. They all seemed pleased and optimistic. Then the unthinkable happened. He started having a cluster of spasms (49 spasms in 23 minutes). It was heartbreaking to Ryan and I. We thought we were on the right track and then these ugly monsters come storming back into our lives. We honestly wanted to pack up and leave right then and there. We thought, "why stay hooked up when clearly he is still having spasms, which meant the Hypsarrythmia was back and his brain was slowly being damaged." It was hard to stomach staying there all night and we were dreading the morning when the doctors would come in and tell us the horrible news.

Morning came and we anxiously waited for the doctors to make their rounds. WE JUST WANTED TO GET OUT OF THERE. Marek's doctors finally came in. These were the results:

Good news first-

• We pushed the button over 25 times for his face scrunching/eye rolling/should shrugging = NONE WERE SEIZURES!!!
• Marek had ZERO seizures during the night. (So his waking up every 20-30 minutes is due to either medicine or bad learned behavior)
• Marek had periods of normal brain activity. The doctor said that if we would have had a routine 40 minute EEG it would have been read as normal depending on which 40 minutes they would have captured.
• Marek's EEG did not improve from his previous but it didn't get worse either and it is nowhere near the chaos of Hypsarrythmia that he had when he was first diagnosed.

Not bad but the not so good news-

• The one time we pushed the button when he was having his "classic spasms" was in fact a seizure. They are unsure whether the seizure was a spasm or tonic seizure however, they informed us that it didn't really matter because they would treat it the same way. 
• They are still seeing spikes on Marek's EEG. They explained to us that spikes are like the ticking you hear the furnace make right before it ignites and turns on. IF the "furnace ignites" then it would lead to Marek having a seizure. Basically Marek is very prone to seizures but his medicine is helping keep them at bay which is good. We are still hoping that his EEG is one day completely normal.
• The doctors are hopeful that IF the seizures stay away he will continue to develop. We are still skating on thin ice, Marek is currently weaning off the steroids which could lead to more seizures and we will begin to wean Topamax this weekend which could also lead to more seizures. To combat these risks the doctors are upping his dose of Sabril to hopefully keep him seizure free.

We thank God for these good results and we also thank each and every one of you that have continually been praying for our little peanut. Although it was a very scary 24 hours, we are very happy and relieved with the results. We will be continually praying for seizure freedom and that Marek continues to make developmental progress. 

Finally a 24 Hour EEG

Marek has finally adjusted to his medication, Sabril/Vigabatrin. When we started the medicine last Friday he was very tired and fussed all day and night. Over the weekend we have seen him slowly get his personality, stamina and strength back. It was scary while he adjusted to the medication because we are always second guessing whether his inability to work at therapy is due to the IS regressing his skills. It is reassuring to us to see him holding his head up for long periods of time again and trying to figure out how to roll over from back to tummy.  Marek has had some rough therapy sessions these last two weeks because he has been adjusting to his medicine. Hopefully now that he is back to his old self again we can see him make some gains in his development.

Although we haven't seen any of his classic spasms we have been noticing him doing a lot of strange, involuntary movements with his body. We have been wondering for the last few weeks whether these movements are different forms of spasms or if Marek's IS has evolved into different seizure types. The only way to know whether his movements are normal baby activity, spasms or seizure is to capture the movements while hooked up to an EEG. Most EEG tests are 45 minutes which I have felt are not long enough to give us conclusive results on what is going on with Marek. I have been fighting for a 24 hour EEG for over a month and was FINALLY granted one. We will be admitted to St. Louis Children's Hospital tomorrow morning at 8:45 am. We will stay there over night and be discharged some time Thursday. We are very anxious to see the results. We are hoping that all the little movement he makes are not seizures, and definitely not spasms since he has so many throughout the day. Please pray for an improved EEG reading for our little guy tomorrow.

Marek had a a nutritionist come and evaluate him today and he was approved for services once a month. Marek sleeps in 30 minute increments at night (another reason we are wanting a 24 hr EEG so we know whether he is waking up because of seizures/spasms or because he has developed a bad habit) and drinks 8 bottles throughout the night. During the day he could care less about his bottle or baby food.  His nutritionist is going to make sure that his diet is supplemented correctly since he has been on steroids for half his life.  She will also make sure he is receiving the correct nutrition since he has the most disorganized eating schedule.

We are still waiting of the results from the parent chromosome test which will tell us whether Marek's  abnormality is anything to worry about. We should be getting those results as well as his retina test results this week.

We will let everyone know how tomorrow goes as soon as we know.

A Wonderful Benefit

Marek's benefit on Saturday was absolutely amazing. It was very emotional for both of us but in a good way. We have never felt so much love and support for our little guy, it warmed our hearts and lifted our spirits knowing how many people are there for us. We cannot put into words how grateful and appreciative we are for everyone in our lives. We wish we could name everyone individually for every little thing that they have done but our fear is we would forget someone. To everyone that put in so much time and effort organizing the event, THANK YOU, THANK YOU, THANK YOU! To everyone that donated items, food, venue, band etc, THANK YOU, THANK YOU, THANK YOU! To everyone that came out to support us or sent us donations THANK YOU, THANK YOU, THANK YOU!!!! Marek will get the best help that we can find him thanks to everyone. 

We have thought very hard as to how we could ever truly show our gratitude and the truth is nothing ever will. We never thought that we would be on the receiving side of so much generosity and support, it is truly humbling and that is why we will always be paying it forward in any way, shape or form. We hope that we can help as many people in the future that have helped us over the past few months. 

Rollercoaster Ride from Hell

When I say that this journey is a roller coaster ride I am not exaggerating by any means. Marek can do the littlest positive thing, like when he rolled over on Friday, and I am over the moon ecstatic. Then with the snap of a finger things can come tumbling down, like today when he had a 10 minute cluster of spasms after going a week without any. I feel like my body is being jolted from side to side as we stay on this ride we now call our lives. I have learned very quickly these last few months to live in the moment because with this disease things change so fast, tomorrow is not a given, nor is five minutes from now. This just SUCKS. I hope and pray that the progress he has made this last week doesn't get ripped away from him like last time.

The doctors are going to meet today to figure out a faster wean schedule so that Marek can come off of the drugs that are not helping him, especially the steroid. They are considering putting him back on Vigabatrin since this is one of the few drugs he can take while on the Keto diet. We will probably hear back from his neurologist tomorrow. On Thursday, we meet with the geneticist. We were originally given October 8th as our first meeting which was crazy to me to have to wait that long so we were put on a cancellation list and one popped up this week.

I honestly believe that since getting Marek's diagnosis I have been grieving. Grieving the loss of all my visions on how I thought I would spend the first year of my baby's life with him, grieving the loss of time lost between family members and Marek, and most of all grieving the loss of NORMAL. I thought I would be taking Marek to the park on beautiful days like this but instead we are waking up early to get blood drawn and spending the day in doctors offices, I thought I would be able to go shopping for cute baby clothes and fun toys for my son but instead he stays in pajamas because of his weight gain and I am ordering therapy equipment. None of this seems NORMAL to me. I know that one day, way down the road,  I will wake up and my life will seem NORMAL to me again, it will just be the NEW NORMAL. I am just not there yet.

These last few months have been the darkest most scariest days of my life. No one can understand the feeling you get when you receive a diagnosis for your child that could potentially cause them to struggle through life, that is unless they have lived through it. There are not words to describe the feeling. I have met some amazing parents through Infantile Spasms support groups. One mom shared this with me and I thought that I would post it on Marek's blog so that when other parents are searching for information on Infantile Spasms and struggling with their emotions that it could lend some support to them as it has for me.

The poem below really hit me. Every day is a challenge, some are harder than others. I have faked a lot of smiles and laughs when all I have wanted to do is cry when people ask me how it is going with Marek, but to me that would be weak. So I will keep my meltdowns to the showers and car rides when I am alone. One day it will get better but for now I am positive this is hell.

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think  that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded.Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will  help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

With love,

Jess

This JUST HAPPENED

We are SOOOOOOOOOOOOO excited. It has been over a month since this happened! Literally skipping around the house, doing cartwheels and singing "GO MAREK, GO MAREK"