Overnight EEG

We just completed a scheduled overnight stay in our local hospital for a 24 hour EEG. The test was ordered in March by Gabriel’s, epileptologist. After 2 years of almost complete seizure freedom, it was time to take a long close look at Gabriel’s brain and see how things are doing. With Gabriel’s form of epilepsy, Doose, there is a chance that his brain will essentially heal and begin controlling seizures. This has always been our hope and prayer. When the doctor suggested the 24 hour EEG, he mentioned the possibility of weaning medication (IF the test results showed the brain was improving). He mentioned that there is a 30% chance of the seizures returning as a result of a wean. At the time I thought, “Oh HELL, NO! There is NO WAY on earth I am risking putting my child’s body through seizures again”. I pictured myself levitating movie style and landing between the doctor and my son in a defensive ninja stance. My mama bear instincts were on full alert! We didn’t tell many people about this doctors visit at all because we did not want to deal with thought of having to make a decision that could cause our child to have seizures again.

Fast forward 6 months, and we finally get the call from our hospital to schedule the EEG. The doctor had told us that scheduling was a few months out, however we had begin thinking we had dropped off the radar and were never going to get called. When they did finally call and leave a message it took us a couple weeks to call back and schedule the test. Did we really want the results? And the weight of making hard decisions based on those results? We finally decided to schedule the test and get it off our plates.

In the weeks leading up to the test, I began to hope and dream of getting test results that indicated Gabriel’s brain had healed. What if he was the 1/3 of patients whose brain matures and starts working correctly? What if we could get him off all the meds? Would his creativity and intelligence be able to shine through again? I allowed myself to think of the possible good outcomes instead of just fear the bad possibilities.

The day of the test Gabriel woke up excited to go to the hospital. His memories of the hospital are all good, so thankfully it is easy to get him ready to go. By 8 a.m. he had packed a huge bucket of toys and was ready to go. He did not like getting the electrodes placed on his head (the glue was stinky and they used a little vaccuum that blew cold air to set the glue). He got very worried when we called the electrodes wires. So we changed out language and talked about them as strings, then he was fine. He was scared and held my hand very tight for the hour it took to get hooked up. He was still brave and kept his head on the pillow. He even giggled a few times. As soon as he was allowed to move he wanted to sit up, get off the bed and play.

We had our own toys, plus toys given and loaned to us from friends. He had a good time playing. His energy levels were much lower than normal and he kept saying his head hurt. I am sure having all those things attached to his head was uncomfortable. He made sure that either Chuck or I was right next to him every minute.

In the morning he was very happy when the nurse asked if he was ready to get unhooked. He even made a comment about how good the tech was at combing his hair.He loved the room service and ordered Pizza, Pancakes and Blueberries for every meal.

Before we were discharged, a neurologist quickly reviewed Gabriel’s results and gave us a quick run down. Long story short…there were no seizures recorded (YAY!), but there was a lot of background activity (not good). The background activity decreased when the meds were given and increased as the meds wore off. This would indicate that the medicine is doing it’s job and it is what is stopping the seizures. The background activity was the most pronounced overnight. This doctor was just giving a quick report and not familiar with Gabriel’s whole history, so no decisions or official advice was given at that time. Gabriel’s doctor will follow up on the phone in the next few weeks and we will see him in our regular clinic visit in February.

After my initial ninja stance,HELL NO attitude, I was surprised at how sad and disappointed I was to hear we still need the meds. I am unbelievably thankful for the felbamate, which is stopping the seizures, but sad that we still need it. We are also painfully aware that just because a medicine works for a while doesn’t mean t will always work. The test results also reinforce our vigilance in monitoring Gabriel while he is sleeping.

Through all of this the bible verse that has been resonated with my soul is Romans 5:5 “and Hope does not disappoint us, because God has poured out his love into our hearts, by the Holy Spirit, whom he has given to us”.  So I cling to hope that Gabriel’s brain will mature and start doing what it needs to and that seizures will be officially gone from his life….the sooner the better. I hope that if he brain doesn’t heal that we can continue to have freedom from seizures from the miracle of modern medicine.  My eternal HOPE, as always lies in promise of eternity free from suffering and pain.

Trying out “The Life Changing Magic of Tidying Up” My Marie Kondo

HI Readers! Today’s post is going to focus on my 50% reduction stuff. G man is doing great and I’ll post an update about him soon but today is all about TIDYING UP.

I love that my journey into purging and organizing our house has inspired others. I love that I often get posts on my facebook feed or personal notes asking my opinion on something or sharing a great article, book or tip.

I started hearing about Marie Kondo’s book “The Life Changing Magic of Tidying Up” around Christmas last year. (Her Method is called KonMari Method). I read several articles about her approach and was intrigued.   At first, my biggest take away was instead of deciding what to get rid of, decide what to keep. ONLY keep things that spark JOY. It has been interesting to see the things that I have let go because they don’t spark joy for me. Several practical items that I’ve kept in case we needed them, have now moved on! It feels great!

My own perspective on things has changed so much. I no longer look around my house wide-eyed thinking “what can we purge, what can we purge, what can we get rid of”. I see things as …”Yes, that sparks joy. We should keep it. Or Nope–we don’t need it, we don’t use it, it doesn’t spark joy. Time for it to move on.”

I employed several of the tips I had gleened from articles or other’s descriptions of the KonMari Method before purchasing the book. I finally purchased the book (in audio version) several weeks ago. I am very glad I did, it has helped me understand the why behind how methods.

At first I was kind of turned off by the book. Kondo’s writing style is very direct and precise. She uses words like “Never” and “always” a lot.  I am personally turned offed by the use of such absolute terms. (the book is a translation from Japanese, so there maybe some things lost in translation). She also personifies items giving examples of what our stuff would say.  Kondo write things like “Your items want to be of service to you. If they aren’t they want to be somewhere they can be used”, or “NEVER ball your socks, the only time they get to rest is when you are not wearing them”. This was a little out there for me personally. However, I have to admit that now I will look at something and think “humm, I wonder if that is best used here or if it could serve it’s purposed better outside of our home.”

So long story short. This book is totally worth checking out.

You can purchase her book almost anywhere including Amazon. I got the audio version through audible.com. (Audible is an amazon company, if you aren’t a member of audible you can join and get a book for free–which you can keep after you cancel your free membership. Often times either living social or groupon have codes for 2 audio books for joining audible.)

 

 

 

What we’ve been fighting for.

Notice the new header? Thanks to Helen Ransom of FACES YOU LOVE Photography, we have updated family pictures!

 

We have had a few months really good months!! Gabriel had an awesome year at school! He graduated from preschool and is ready for Kindergarten! The extra year before Kindergarten was just what he needed. He was blessed with amazing teacher (I could write a whole blog about how wonderful his teacher was!) who took time to get to know him and helped him gain so many skills. The most exciting news is that Gabriel is now prepared to enter a kindergarten classroom with his peers!

He is doing so many normal kid things right now… like digging in dirt, riding his bike, hitting amusement parks and eating ice cream! (all 4 of those activities have caused serious fear and concern for us in the past!).

He got to participate on a Miracle League baseball team. It is a league for students with special needs. It was awesome for all of us to see him to have the opportunity to experience a team sport.

We have officially stayed out of the hospital for over a year!!!!  He has been 99% seizure free for 2 years! I can’t believe I get to type that! 3 years ago I was celebrating 5 days without a seizure. I am beyond thankful that those days are behind us! (i’ll do another post soon on future medical plans).

It is such a pleasure to watch him being a kid! I often observe him with a sense of awe and wonder! What we are getting to live right now….. It’s what we’ve been fighting for!

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Doesnt everyone stands on the pitchers mound to bat?

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The kid LOVES to dig in the dirt!

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He thought this was a good way to ride his bike. He kept saying Good Job Mommy–Keep Going.

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Graduating from Preschool!

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Celebrating the last day of school with custard!

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Riding a Roller Coaster!

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Fun at the amusement park with Mommy!

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He is FINALLY tall enough to drive to Taxi! He took the job very seriously!

 

 

Super Bowl Memories

When asked about SuperBowl memories, I imagine most people think of cheering on a favorite team, delicious food, or special times with friends or family.

Not me. SuperBowl Sunday 2012 represents for me that day our lives fell apart. It was during the SuperBowl, that my perfect, silly, little almost 3 year old called “Mommy”, fell down, stood up, took 2 steps towards me, fell down again and started seizing.

It was terrifying. I was alone and had no idea what was happening. I am normally very calm and cool headed in crisis. Not that day. I remember calling 911 and saying Gabriel’s name over and over trying to get him to see me. I remember the seizure stopping and him falling asleep. I remember yelling his name and shaking and rocking him, while holding him to my chest, trying to get him to wake up.  My first aid training, as a teacher, had taught me to keep people who may have hit their heads awake. The wonderful and calm 911 operator told me it was ok for him to sleep. That what I saw sounded like a seizure (I think, I honestly can’t remember what he said, except that sleep was ok).  And that help was on the way.

I remember calling Chuck,who was on the way to a Super Bowl party and over 30 minutes away. While ,I was on the phone with him the ambulance arrived. I remember hearing the sirens and walking to open the door. I remember a female paramedic with the last name Finnegan. (We would see her again weeks later. This time on the side of the interstate in a terrential downpour. Where she recognized G from his red curly hair). I remember a fireman asking if I had my purse and keys and if I wanted to lock the front door. I remember our good friend beating us to the hospital. Chuck had called her and she dropped everything to come to the hospital, so that I wouldn’t be alone. I remember a full hospital room, as my parents and Chuck arrived and our friend prayed for us. I remember the doctors telling us that seizures with fevers were very common and this would probably never happen again. I remember coming back to our house with my parents and trying to watch the rest of the game. I remember thinking “whew, thank God that is over”.

Today is SuperBowl Sunday 2015. 3 years later and our sweet, silly little boy is almost 6. This day will forever be a dividing line in his life. He has now lived more life “sick” than he did healthy.

I have had very few “why” or “how” moments, but pondering this for the last several weeks is one of those. I keep thinking “how is it possible that he has been sick longer than he was healthy?”. As with all injustice, it is unfair and not something I can understand on this side of eternity.

Right now our kid is rocking life! And I mean rocking it. In the last few weeks he has made HUGE developmental leaps. He is more interactive than he has been in years. He is able to have conversations and truly interact with his peers. His physical coordination is stronger and stronger everyday. He is exhibiting more and more self-care and independence skills than we have ever seen.

Today, I am thinking about how different our lives are. How I have learned that, as another friend with a child who was diagnosed with life long medical needs said, you don’t ever really adjust to the “new normal”,  but you adjust to the necessary routines. I have learned the significance of being present. G insists that I stay with him until he is asleep each night. I remember being annoyed by this before he was sick. Now I don’t mind, each night I try to soak up those precious moments. The cold hard fact is that SUDEP could take his life any night. We have things in place to prevent this but it is a reality we live with.

Next month we mark 2 years of almost complete seizure freedom (yes, we had a few in Oct–but compared to 100’s of drop seizures a day and multiple gran mal seizures a week that is neglagible).

As always, I post this hoping that our story will bless or help someone else, either in knowing they are not alone or that it is possible to move forward when you are convince you can’t.  There is a poem titled Call Back, from the book Streams in the Desert, that I have loved for years. I have recalled it many times during our journey when we learn something from another family sharing their story. It is about being further down a road and calling back to those behind you.

Call Back

If you have gone a little way ahead of me, call back­;
‘Twill cheer my heart and help my feet along the stony track;
And if, perchance, Faith’s light is dim, because the oil is low,
Your call will guide my lagging course as wearily I go.

Call back, and tell me that He went with you into the storm;
Call back, and say He kept you when the forest’s roots were torn;
That when the heavens thundered and the earthquake shook the hill,
He bore you up and held you where the very air was still.

O friend, call back and tell me, for I cannot see your face;
They say it glows with triumph, and your feet bound in the race;
But there are mists between us, and my spirit eyes are dim,
And I cannot see the glory, though I long for word of Him.

But if you’ll say He heard you when your prayer was but a cry,
And if you’ll say He saw you through the night’s sin-darkened sky,­
If you have gone a little way ahead, O friend, call back,­
‘Twill cheer my heart and help my feet along the stony track.

– Selected
(Quoted in Streams In The Desert devotional)

A year of reduction

HI Blog Readers,

This post is going to be primarily about my commitment to reduce the # of items in our home by 50% in 2014.  Early in the year I started referring to this commitment as  50% reduction and posting my triumphs on social media. I love it when people ask me how things are going!

After 12 months of intentional purging I would say that eliminated at least 30% of the items in our home. If I don’t count the basement, we definitely hit 50%. The basement is a beast unto it’s own. I am proud of all the progress we have made and proud to say, that we are making the same commitment for 2015–and this year the basement counts.

I have learned a lot about myself and our family through this process. I thought I might share a few things, as well as, share some sources or ideas for anyone wanting to some de-cluttering of their own.

  1. Spending habits change when you are focused on eilminating
    1. For the first 6 months of the year I made myself give away 2 items for every 1 item I brought in. (So if I bought a shirt, I had to give away 2 shirts)
    2. I am a total bargain hunter. I LOVE a good deal. I still do. However, now I am able to see a great deal on something and leave it at the store. Often times the item will go into the cart (sometimes more than once) but after a moment of reflection, it goes back on the shelf. (I do not own the collectors edition of the Polar Express book and movie even though it was 50% off. That one was hard to pass up. My kids LOOOOVVVEEES trains, but we have it the movie on the DVR and already own the book).
    3. My impulse buying has drastically reduced. I think about where the item would fit, be stored in my home before I buy.
  2. My house has grown in size!
    1. My closet is plenty big. When I purged all the things that didn’t fit, or that I didn’t like there was plenty of room for what I liked and need. (I feel like I need to put a disclaimer in here: I am very unlike the average female in this one-so husband’s please don’t read this and say to your wife “Amy says….”.
    2. It is possible to walk through the living room without tripping over toys.
    3. The dining room has a floor! (Our dining room houses all of my husband’s PhD work. Boxes and boxes of papers got to leave the house forever after he finished Comps).
  3. The less you have, the easier it is to know what you have.
    1. It has been so freeing to know what we own and where to find it! Instead of wondering “Do we have a 3 hole punch?” I know-yes! and I often I know where it is! (or at least should be!)
    2. We have not had to run out and rebuy things we already own because we can’t them. (See #1)
  4. If the answer to “where does this go?” is  “Just Stick it in the Basement/Garage”it is a problem.
    1. Even with all the progress we’ve made we still have a long way to go. There are still a lot of things that we are tossing in one of these 2 areas. However, I cringe inside everytime we just toss something in one of these areas.  A lot of things have been either been put in a trash or donate pile on the spur of the moment thanks to intentional reduction.
  5. Reduction can involve non-physical things as well.
    1. We had too many bank accounts. Closed one we didn’t need.
    2. I had too many emails accounts, stopped using one. I still have 3, but 2 are for my jobs.
    3. My DVR list—way smaller.

 

Ok–so now for my ideas, tips, sources

Most importantly just keep moving!

If your personality is to pick one thing and stick with it until you are through-great run with whatever you like.

If you get easily bored, try one thing for a while, when you notice lag, try something else. Just keep moving! A couple fun things I have found or heard of recently are

40 bags in 40 days. http://www.whitehouseblackshutters.com/40-bags-in-40-days-2014/ -We did this over lent. It was fun and surprisingly easy.

2015 in 2015  http://nourishingminimalism.com/2014/12/2015-in-2015-decluttering-challenge.html I saw this one on facebook and it cracked up. It is beautifully simple. The goal is to get rid of 2015 items this year. Print off the chart provided on the website, and mark an X everytime you get rid of something.

 

 

The lastest on G-man.

Hi Blog Readers,

It has been a while since I have given an update on G-man. There are a lot of really good things going on for our little guy.

  • He is doing so well with his physical coordination that he no longer qualifies for Physical therapy at school.  YIPPEE! (the primary purpose for school PT is whether he can safely navigate the classroom environment)
  • His 6 month pulmonology (lungs/breathing) appointment went VERY well. Dr. Taylor at Children’s Mercy is FANTASTIC and went out of her way to say how excited she was at G’s health and progress. The G-tube and Occupational Therapy for swallowing, chewing, mouth strengthening have taken care of all the aspiration issues. We are very hopeful to totally avoid pneumonia this year because of these measures.
  • He continues to develop in new skills interpersonally, academically and developmentally. He put on his coat independently several days ago, as if he had done it 100 times! It is really exciting to see him easily accomplish tasks the entail complex motor planning. It shows that his brain is making those connections, retaining them and recalling them when needed! WHOOP! WHOOP!

He has had a few more seizures or seizure type things since our last post in Oct. It is hard to tell what is a seizure and what is some other random thing. Most importantly to us, we have not seen any typical  prolonged grand/mal or drop seizures. We have not had to use rescue meds or call 911. It is a constant balancing act of intentionally moving forward, yet being aware and prepared for if the bottom falls out again (because with Doose that is always a real and scary possibility).

I’m still not at a point of having photos organized to easily get in the blog, but I wanted to share  at least one photo. Here he is happy to be eating strawberries! (I still find myself daily thankful that he can eat regularly! It has been almost a year since he came off the keto diet, but I still get excited that he can eat as many strawberries as he wants!)

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Bump in the Road

Gabriel had a small seizure at school yesterday 🙁

We are going to increase his felbamate a small amount and hope that is the only seizure. He has gained 4 pounds since this summer, so it makes sense he would need more medicine with a bigger body.

It is a bummer that his bigger body needs more medicine because it means that he has not outgrown the seizure symptoms but that the medication is needed. We are incredibility thankful for a medication that is working. However our ultimate hope and prayer is that he will be in the 1/3 of doose cases that outgrow the seizures (essentially the channels in the brain that need to open and close correctly begin to do their job).

His school handled it beautifully! It sounds like the seizure was minor tremors on one side of his body, that lasted a minute. It could have so easily been completely missed but his teachers are amazing! They noticed it and tended it him right away. His teacher knew to looks past the physical shaking and try to communicate with him. The fact that she knew to do this helped determine he had in fact had a seizure.

So for now, we are hoping and praying that is was a bump in the road.

“He is doing really good.”

HI Blog Readers!
It has been too long. In my desire to only have great posts with beautiful pictures I have failed to post at all.

The quick update:  G is doing awesome in TONS of ways! It feels like we are getting to know him again! His personality is coming back and it has been so fun to really enjoy being his parent.

We had a wonderful summer. Thanks to our make a wish trip in January we were able to go to several other theme/water park attractions through out the summer for FREE! He loved them all, especially a local water park.

The school year has started off beautifully for Gabriel. He is at a new school with new teachers. We could not be happier with team of people working with him, especially his lead classroom teacher. Her personality , as well as, her philosophy of early childhood learning are exactly what Gabriel needs. We are seeing amazing things at home as a result. He is much more conversational and tuned into relating with us. He is willing and interested in more and more painting, writing,  projects.

The last several months have been full of great developmental steps and sighs of relief on our part. We are astounded by the leaps he has made physically since we started the overnight supplemental feedings. His balance is so much better. He is interested in riding his bike with training wheels. He can jump with and land on 2 feet again (a skill that he lost for almost 2 years). He can kick to help propel himself in the pool.

The feeding has also helped with his interpersonal interactions. He is able to carry on short conversations now. He can answer questions when asked (as before sometimes he would take 10-15 seconds to answer or not answer at all).

It is so fun to be able to answer “He is doing really good” when people ask! (Yes, Yes, I know the correct grammar is “he is well”) 😉

Overnight feeding update.

The last couple weeks have entailed trying to set up some new routines around Gabriel’s G-tube and feeding. We have a whole new set of medical equipment-bags, syringes, pump, hangar, etc, etc.

We got the pump for over night feedings for G a couple weeks ago. We jumped all of the insurance hoops and supposedly had “approval” for it to be covered.

Then the day it got delivered the rep explained that insurance may or may not be covering it. Super GRRRRRR! So for now we have it! If insurance doesn’t cover it we will have to decide if we want to pay out of pocket for the machine rental and bags or quit the treatment (which would be several hundred $ a month). We are documenting everything and plan to FIGHT to keep it! The whole diagnosis and point of the G-tube was for him to have overnight feeding.

Now the good news. Gabriel’s energy levels, attention, and ability to communicate improved immediately when we started doing the overnight feeds. We are still learning how to use the pump correctly. One night it just didn’t work correctly. G was noticeably more irritable and less communicative the next day.

When I say communicative I am referring to his ability to articulate what he wants, what he is feeling, and participate in conversation. These last couple weeks have been so enjoyable as his parent. He is able to follow directions. He is loving to play and giggle. He loves to do things that get Chuck or I playing or laughing with him.

I don’t dread taking him the grocery store with me! He can actually help a little bit and we talk about the foods he wants to get, etc. In the past grocery shopping was sooo hard. He would melt down multiple times every trip. Run spontaneously through the store ripping things off the shelves.  In contrast, now that he is able to communicate he can tell me what he wants and we can go get it!

We went to  local amusement park last weekend and we all had so much fun! He was able to stand in line and wait his turn! (well like a normal preschooler) He and his cousin made up silly inside jokes about their favorite rides.

He seems happier too. He is humming and singing to himself almost all the time.

It feels like several of the recent steps have been significant in unlocking his ability to participate in the world. As I am watching him come more and more into himself I understand why he spent so much time emotional and frustrated. I feel like the ADD meds got his brain to slow down enough to process (receptive communication) and now the nutrition is giving his body and brain the ability to participate in the world.

Exciting and heartbreaking all at once! I am so proud of how well this kid handles all the insane things he has had to endure. For now we are celebrating that things are going well!

 

Best Day EVER!

After several weeks of slowly adjusting Gabriel’s Valpo and ADD medicine, we had a great day yesterday!

Gabriel was alert, attentive, and articulate! He was able to answer questions quickly and in context. He engaged in play both with me and by himself! He put his own shoes on (before I asked!) and even used the potty! He only had 1 breakdown, it lasted 5 minutes then he moved on!

Today started out wonderfully as well. He helped me cooked scrambled eggs for breakfast. He willingly got in the car to head to his day camp at church. He put his backpack on to walk down the hallway, and even greeted his teacher!

Everyday is new and different. I am keenly aware that tomorrow could be crazy full of emotional breakdowns and impulsiveness and silence but yesterday…was AWESOME and I hope for many more days just like it!

A facebook friend recently posted something about those moments when you see your child shining through neurological challenges. Those moments are beautiful and precious! My hope and prayer is to see more and more of G shining through Doose. I also hope and pray for other parents to see more of their own children shining through whatever neurological, physical or emotional challenges their families are facing.