Sharing stories of fear, frustration, hope and acceptance

Posts tagged ‘seizures’

The Tortoise and the Hare

  

  If having a child with special needs is really a race than I wonder… Am I the Tortoise? Or the Hare?

Somebody warned me once about pacing myself in this long race. They warned me that I would burn out, definitely more than the usual parenting circumstance. I heard the warning but didn’t listen. Even right now in this very moment I find myself in a dark, quiet room and I still can not sleep. I still can not shut off and relax. I’m not sure if this is a culmination of all the lack of sleep or if I should go see my doctor. It’s probably both, but there is just too much to do, between being Adam’s night nurse and mommy advocate during the day it’s getting hard to deny the importance of proper sleep and good nutrition. I’m one of those; the kind that go, go, go so I guess that makes me the Hare.

I have a plan: rehabilitate, restore, reroute. These are all words I associate with Adam and his recovery. I see the potential in him and though I have a team of support I can’t help but still feel a heavy sense of responsibility. It feels as if Adam is up against a clock of some kind and when time runs out that’s it. That’s how he will stay and all the people who didn’t believe in him would be right. I can see their smirks right now.  I can hear them say “well there’s just not enough progress”.. Dismissing ALL the progress he’s made. Progress like breath on his own or pee on his own. I found myself saying “slow and steady wins the race.” That’s how I’d describe Adam as the Tortoise because he could care less about what “they” think. He does things in his time, in his way.

I know that sometimes, maybe most times you can’t make others see or believe what you need them to. I know I’m hanging onto a promise that God shared with me, I know the potential Adam has and so I push, I advocate, I cheerlead him through it, fingers crossed his new physical therapist will too.

Perhaps Adam being the Tortoise and me being the Hare (THX SUSAN!) 🙂 means we are running this race together and in the end my Tortoise will win the race.

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Things to do; Places to see

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So much fun is happening around here! FINALLY!!!! We are continuing to reduce seizure meds on Adam. It’s been a long year and FINALLY Adam is slowly showing consistent, positive responses.
He is more attentive, his eyes are wide awake and smiles/ smirks more often, he is re-learning about peek-a-boo and patty-cake and bubbles.

He has a new dog named Mia. Mia loves to be by Adam mostly when he takes her cruising in his wheelchair.

Adam has gone HORSEBACK RIDING!
Yes! See picture to prove it!
He started horse riding therapy.
His first time was last Tuesday.
Watching Adam ride away on the horse (of course with therapists all around him) was one of the highlights of my life. I felt like I was letting him ride off into the sunset, to land of pure happiness. As I stood there I realized this precious moment in life had taken my breath away and I could only whisper, “GO ADAM GO” as tears of pure blissful joy skipped merrily down my cheeks. It was the BEST PLACE THIS CHILD HAS EVER BEEN. Can’t wait to go back.

He lost a tooth!! A TOTAL SURPRISE!
Thank goodness the nurse was with him and calmly went fishing for the missing tooth. I would have freaked!

Let see… What else…
Oh. The park. Adam also went to the park with his big brother Frankie.

Adam is truly turning a corner.
Each day I’M SO SO THANKFUL TO GOD. Words don’t describe. He is making a comeback… More and more this Adam resembles “old-Adam”, “healthier-Adam”. I’m realizing that he never left…. Adam’s personality NEVER left. It NEVER changed. It was/is there for the unveiling. I am more hopeful and more determined.
LETS DO THIS ADAM!!!

Wild Fires

Look for this Artist: Rachel Aldous
Song titled: A Mother’s Prayer
(I found on utube)

I have become frustrated with doctors and their lack of listening skills. Adam has a thing he does with his eyes just before he seizes. He will stare a blank far off stare and his eyes will get stuck in a kind of day dream. We call them “starring spells” since, according to the neurologist, they are NOT seizures. (Lately he’s been having facial twitches as well.) These are “not seizures” either. I call them very important WARNING SIGNS. Last night thanks to the night nurse I was able to maintain my sanity because Adam was exhibiting these behaviors and I’ve been telling the doctors only to hear the response, they are not seizures.

I knew something was coming. I felt it- something was stirring in my gut mixed with anxiety. I paced like an animal-mother would near her wounded baby.

Nothing happened. I went to sleep. At 5:30am I awoke to find that Adam had begun to seize. He went into “status” until 10:00pm. Today he is in a “Pentobarb Coma”. It’s a medically induced coma to help his brain completely shut down. The hope is he will awake slowly as the meds are reduced and his brain will have rested enough to protect itself against seizures.

Now he not only has a breathing tube, feeding tube, catheter, EEG continuously recording and a pick-line; one in his arm and another iv access in his neck but he also had to get a blood transfusion.

I often say that doctors underestimate Adams “ability” to seize. I know better. When Adam’s brain begins to seize if it doesn’t get meds soon enough it’s like an angry wild fire. I know, I’ve seen it. I can’t help to wonder if the doctors would have listened to me and Adams warning signs could this have been prevented. Now the doctors have seen it for themselves. MAYBE NOW they will listen, maybe now Adam has their attention.

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You CANNOT Have My Child!

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You can NOT take my child from me. You leave him as he was, finally on his path of progress. He was Signing and growing happily as slow as it may have seemed. He was sitting, self feeding and standing, showing off to the therapist who have helped him along the way. You can NOT have his smile don’t you dare mess with his face! YOU CAN NOT have his vision its his only means to communicate! YOU WILL NOT TAKE his courage nor will you damage his strength. Get away seizures PLEASE go away. He’s my baby, he’s my fighter and he’s put up such a fight. Please leave him in peace not just for the night but for the rest of his life.

Today Is All That Counts

deafchildrennear on January 26, 2012 at 12:17 pm said:

Your blog brought me to tears. My 2 year old son is currently in a PICU because of seizures.. He has delays and doesnt walk yet either.. Today I was walking in the hospital and I saw a little 3 year old boy walking with his mom getting in her way and skipping around. I was like you, my heart yearns for the day when I do that with my son. How relieved I would be to help him reach such goal. I understand how you feel about questioning, “why can’t we be the ones who are allowed to take it ( what ever it maybe) for granted???” My heart goes out to you and your family- you are NOT alone and thank you for sharing such a beautiful blog. You remind me the importance of making each individual moment count.
There is a helpful saying I’ve heard, it’s not the destination that counts its the journey….

Reply ↓

threepuzzlepieces
on January 26, 2012 at 1:28 pm said:

I know what you mean. I felt like such a terrible person giving other babies the “stink eye” just because they were healthy and walking. My husband used to jokingly whisper in my ear, “you want me to kick that baby for you?” Obviously a joke, and really awful, but really, how dare they parade their healthy kids around in public like that! My daughter was finally able to leave her walker behind just about 2 months ago. She’s still pretty unsteady, but it is amazing, it just took a lot of work.

I can tell from reading your blog that your son has an amazing mom. He will be okay. And so will you. We’ll be praying for you.

In the meantime, there’s a blog written by another autism mom, but every once in a while it applies to all of us. Not sure if you’ve read this one, but here it is:
http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/
We’ll be praying for you and your family. Hang in there. Hugs.

This is Erin’s post titled Perspective. You can find it at threepuzzlepieces.wordpress.com
(hopefully I copied the link right. Still learning). Her post led to the previous comments. I would like all mother’s to read. It is definitely a tear jerker- but it is a reminder to us to stop and enjoy our children TODAY, IN THIS moment because you never know when things will change.

God puts rainbows in the clouds so that each of us – in the dreariest and most dreaded moments – can see a possibility of hope. ~Maya Angelou

I remember the haze of last spring. The fog of fear that seemed to cover every thought, word and action. I remember how lonely it was. I was afraid to even talk about it, even with my husband, for fear that saying it out loud would somehow make it more real. I explained some of this in a previous post here.

The doctors believed that they had found a diagnosis for Mary. Something called ataxia telangiectasia. A progressive and fatal disease that would see my baby girl in a wheelchair by the time she was ten, and in a grave before she turned twenty. The disease would steal her ability to walk and balance, and it would slur her speech. It would then give her cancer and a sensitivity to radiation that would make treatment of the cancer extremely difficult. If the cancer didn’t kill her, then she would likely die from pneumonia after catching a common cold from a sibling or friend. This is what the doctors were telling me. This is what they believed she had. In order to get into the special clinic in Baltimore at Johns Hopkins, she would need to have the genetic testing completed. So we waited for the results. We waited for two months.

Suddenly, the little things really didn’t matter any more. A parent boasting on Facebook about what grades their child got on their report card, somebody’s soccer game, a spelling test, the latest makeup trends for spring, people’s plans for Easter. It all seemed so frivolous. Of course I pretended to care. I listened to the latest gossip with a painted smile. I was in a daze. I couldn’t talk to anyone about it. Other children in wheelchairs at the hospital caused me to gasp for breath. Healthy children running through the playground made me cry. I had a constant pit in my stomach. I carried my daughter with me everywhere, never wanting to put her down. I wanted to hold onto her forever.

I remember calling the doctor twice a week to see if the test had come back yet. The doctor had thought 4-6 weeks. By week two, I was a wreck. When week 10 rolled around I was numb. Finally, the Friday before Mother’s Day, the doctor called with the surprising result- “The test for the ATM gene was negative.” I remembering asking her to repeat and clarify herself several times. I felt like I was dreaming. I don’t think I realized up until that point just how certain we had been about this diagnosis. I don’t think I realized it until the huge choking sobs of relief erupted from deep inside my chest.

To say I want to go back to that time, would be a lie. It was, to be sure, the most torturous period of my life. To be able to even entertain the idea of a future for my daughter feels so much like the gift that it actually is. How many people get to understand just what a gift each day is?

There are times lately, when I have to remind myself what it is that we are working so hard for. After a long day of 7 hours of therapy for my youngest, on top of several hours of therapy in addition to school for each of my oldest two, it can start to feel overwhelming and frustrating.

I thought very seriously within the last few weeks of just stopping all the therapy, because for so long we have had a mindset of “today could be the beginning of the end,” so why waste it on therapy for the future when there might not be a future? The endless testing, the questions, the lack of answers, while frustrating and frightening, are starting to add up to one thing: a future. So the question comes back, why waste the time on therapy? The answer, because it finally looks as though my baby girl has a future. Words and thoughts I wouldn’t have dared to utter only a few months ago. Something for which I am beyond grateful.

At the same time, I want to return in some small way to the very clear reality that we lived last spring. That every single moment was precious. During that time, I tried to reassure a close friend over email:

Whether or not she has this or something else, or nothing at all, the fact that they are looking is a blessing. It reminds us that every single moment we have with her and our other children is priceless. We have a hint, a warning, a reminder. That is a blessing that our neighbors did not have when they suddenly lost their toddler. There were things they might have done differently with him if they had only known their time with him might be short. L (Mary’s PT) asked me when we were planning on Disney World. I said not until Mary is older and more able to appreciate it. “Well, go now and go later.” Why not? We left the dishes the dishes in the sink the other day and just took the kids out for the afternoon. So we don’t get the back door fixed, or the house vacuumed today. Nobody regrets those things, they regret not spending time. So I have to look at all of this that way. It could very well turn out that all of these tests come back negative. Heck, we’re due to get these results around Easter- that’s gotta be a good sign, right? But whether we have 5 years or 75 years with her, we will know to cherish all of that time. That is the gift we have been given. And Mary has given that gift to everyone who has met her. People light up when they meet her, in part because of the spirit with which she meets her challenges. God is not doing this to us, he is doing this for us.

I remember writing those words, trying to convince myself of their veracity. I sobbed while I was writing it, angry that I should even have to have this kind of conversation. Why couldn’t I just enjoy my baby girl? Why did it have to be so damned critical that we enjoy each precious moment? I wanted to be able to just take it for granted, like so many other parents get to.

At the same time, it puts things back into perspective for me. Life can get so busy. We do forget to treasure the small things sometimes. It helps to be reminded.

We still haven’t taken that trip to Disney. Soon.

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Get What You Want From Your Doctor

As Adam’s advocate I have found that the one secret to getting the resources he needs depends on the vocabulary or terminology I use.
So here’s a tip for parents.
Find someone or go online to help you learn the terminology they are likely to use. Before going to any important appointment or doctor consult have a list of terminology prepared or memorized. If you hear a word used repeatedly write it down, look it up. So that when you talk to this person or team again you will seem more informed and be taken more seriously therefore increasing the chances of getting what you want from the meeting or encounter.

For Example, Adam has epilepsy, he has been hospitalized for two weeks.
During this stay I learned that:
twitch, spasm and jerking are each used differently.
Jerking is the most visible, forceful movement. This can be seen in Grand Mal Seizures.
Spasm is a less aggressive movement and is a little slower (still repeatedly). Twitch is quick tiny movements.
I also learned that the term “rhythmic” is code word for sure sign of seizure (at least for this neurologist). So to explain a movement that you believe may be a seizure describe the area, the style of movement and the duration.

You could say for example, I saw _____’s left arm start twitching at 9:30. It turned into a (heres the helpful terminology) more rhythmic pattern and eventually a jerking movement. This went on for ___mins.

Side note: here is more seizure vocabulary

Clinical Seizures: May be used to describe VISIBLE seizures/ symptoms.

Sub-clinical: seizures that occur in the brain and DO NOT show visible body movement.

Status: status epilepticus (SE) is a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 5 minutes,[1] or recurrent seizures without regaining consciousness between seizures for greater than 5 minutes. It is always considered a medical emergency.

Postitcal State: the resting stage that follows the seizure. The person is extremely exhausted and requires rest.

It’s sad that hospitals and doctors function this way, I worry for parents who may not have the ability to advocate for their children in such ways. If you have any tips or suggestions please feel free to comment.

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