Sharing our Story

I was invited to speak at a Mom's group. I was asked to come share our story.
I spoke yesterday but spent the last two weeks thinking and preparing.

I thought about all of the little lessons God has taught us along the way. I read through emails I sent out starting from the day Brayden was born. I read through the blog from the beginning. I started to outline major events, tests, 911 calls, doctor visits, etc. Looking at it on paper, it was a lot. Almost every month (almost every other week) we have had significant things happening with Brayden. It was exhausting to read through it.

I also looked through tons of pictures and in case you haven't noticed I take pictures of everything and I am glad I do, it helps me see where we have been. Some of the pictures are taken with my nice camera, some with a little digital and some with my phone. Some of the pictures are of happy times others of difficult times. I came across pictures of his seizures and the countless days of bloody vomit (I took them to show the doctors so they knew what we were seeing at home). I cringed at those.

It was hard looking back. Feeling those moments when we heard bad news and more bad news or found Brayden is in yet another delicate state with his seizures or GI problems. It brought back deep emotions that I have to admit I rarely think about and try my hardest not to dwell on.

I spoke. I choked back lots of tears and did my best to share.

I did notice when preparing that I have written a lot about expectations over the past few years...the next blog will be about that...

For now, here are some of pictures I passed around yesterday as I shared our story. Each picture has a story behind it...each picture is worth a thousand words, some good, some bad.

A little bit in pictures from Carrie Jenkins on Vimeo.

To the Moms group, thank you for having me there and letting me share. I am ready to get together with each of you for some coffee!

Report Card time

Well, kinda.

Each day a sheet comes home to report on things he did at school.

Quarterly, Brayden gets his IEP report. Just like a report card, this report comes home with "grades". It does come with lots of comments.

He is making progress with using switches, tolerating touch, supported sitting, hand over hand activities. His report even says "Negative facial expressions are now rare"...that makes me laugh because when he does not like something he lets you know.

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The staff in his class do such a great job making school a great experience for the children and the parents. They send him home with little things that make me smile. The past couple of school days he has come home with a sticker on his big round cheek!

Hello to the ER (yet again)

Sometimes you want to go

Where everybody knows your name...

(Cheers theme song)

We did not want to go here. Although everybody seems to know our name or at least recognize us now.

Brayden went to ER yesterday for a bad seizure.

He started his day acting a bit peculiar. He was uncomfortable, lots of little seizures and twitching in his sleep. It was a day for Carter's basketball game, he was so excited and we were excited to cheer him on.

Brayden had a different plan. Shortly after arriving to the basketball facility, Brayden was in a seizure...one of his bad ones that we know leads to problems. We gave him a dose of the Diastat hoping it would help. We waited, watched the clock and watched Carter's basketball game. Twenty minutes passed since we gave him the medication and no change.

We had to call 911. An ambulance to the parking lot full of families coming and going for basketball. This is our life.

Brayden seized for over an hour and started to come out once we arrived at the hospital. Yet again, his breathing was a bit labored so he was put on oxygen.

Several of the nurses quickly recognized us, as well as a couple of techs. Even the doctor said she remembered Brayden.

Since we have been in this ER many times for seizures, they are not freaking out on us or about Brayden. They wait to see how he does before giving him any heavy medications, as long as he is coming out of the seizure. They run a few tests and wait to see how he does. After he comes out of a prolonged seizure, he tends to go into a VERY deep sleep, to the point that almost nothing wakes him. After the seizure ended he slept for about two hours. Woke up and was good to go!

He was released and we headed home after an afternoon in the ER catching up with the staff.

An update

Being stuck in the snow for over a week was nice but we missed some appointments. I am trying to make up most of them.

We did see Brayden's neurologist. As always the discussion is about seizures. How many is too many in a day? How much medication is too much? What can he tolerate? What effects do the seizures and medication have on him?

For seizure medications, he in on Keppra, Topomax and Lamictal. We have some room to increase a little bit. Brayden's head size has not grown really since he was 4-6 months old so they assume his brain in not growing much.

And in other exciting news...Brayden's bed was approved! The bed should be arriving in 1-2 months! It was first denied and then we resubmitted with more letters from his PT and one of his doctors. Now I get to think about decorating his room. Any ideas?

What people say...

...when they do not know what to say.

I was discussing this with friends yesterday. Things that people tend to say to us regarding Brayden and the adventure his life has brought us.

While I know that people mean well (at least I hope that they do), the majority of these things people say come across accusatory and/or a bit hurtful.

Here are some popular ones Jeremy and I have heard.

• God does not give us more than we can handle.
• Perhaps you need to wait on the Lord.
• Is God trying to tell you something?
• Is this result of sin in your life?
• This might not of happened if you only...
• Maybe you should to do this...

What are some that have been tossed your way?

I have some great comebacks for most of those mentioned above but I am looking into a more positive way to address them (since those do not bring out the best in me).

Snowed in and snowed in some more

We live in Northern Virginia, not the North Pole.

I heard someone say it best when they said they felt like we have been living in a snow globe that won't stop shaking!

I had not been out of the house in 8 eight days. Not once. It began to feel like our own episode of the Shining (they are in a hotel, snowed in and strange things start to happen). We did make it out this afternoon and found walls of snow where the street had been carved out. The walls taller than the car.

We were doing pretty well, even after 36 inches of snowed came to our house. We had power, hosted a neighborhood "snowed in" potluck, even had a meeting (still need your input!) at my house. But then the 2nd snow storm came bringing another 16 inches and intense strong winds. We lost power. The generator kicked on early that morning.

We looked outside, more snow every where, huge snow drifts that were 5 feet high. We were stuck. Emails from surrounding communities were coming in about road closures because snow plows were stuck in the gigantic drifts. There was no way we were getting out anytime soon. You could not tell where yards ended and the streets began.

That is when I started to get jittery. If something happened we could not get out nor anyone get in to help.

A family in the neighborhood, who lost power and does not have a generator, sent out an urgent email begging for help because they had a newborn baby, the house was getting too cold and they needed to get some place warm. We offered for them to come over, we live just one street over but the snow was too deep for them to make it to our house.

Thankfully the power came back on that afternoon. But we were still stuck, not a plow in sight.

I had a brief moment of panic when I went to flush Brayden's tube and it was filled with blood. Blood now?! In the middle of this?! I then realized/hoped there was an easy explanation and that his stomach was not bleeding. After looking him over, suctioning his stomach, I came to the conclusion that the blood came from him chewing his finger so much that it was bleeding and after chewing it the blood drained to his stomach. Thankfully since that moment no more blood.

We tried our best to enjoy it all. Check out the family blog (several posts) for pictures of the real action!

A park, I want everyone's thoughts

While I am stuck inside for yet another day, I have time to think and to plan.

I have been looking into creating a full accessible park right here in my county, Loudoun County. Yesterday (yes amidst the snow) a hand full of people I trust, came to my house to discuss early planning for such a park. We do not have any approval yet, we are exploring our options at this point.

Since last summer, a park has been on my mind. We went to a park that was amazing. It was the first time all three of my boys were playing together. I want that right here for our community. Something big, with lots of action...looking for the WOW factor!

Here is where I need your thoughts...

Are there parks/playgrounds near you that are fully accessible?

What is your favorite part of a playground?

Where do your children play most? The least?

What would you put in a playground?

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Here is an idea we are tossing around. The park theme of Our Town, something to reflect our county. With a section that is all about the city and the other all about the country. What could be some things in it?

I want lots of comments, thoughts, suggestions, lots of them. If you have never commented before, you need to comment. Just click below of the the word comment, you can be anonymous if you like. I just want lots and lots of input.

We hope to present something to our local county directors by spring.

We are in

Yes, we are here.
No, we did not loose power (amazingly).
Yes, we got a lot of snow, somewhere around 32-36 inches.
Yes, we are dug out but the roads are not looking good.
Yes, we are climbing the walls.

Yes, I have lots of pictures but somehow having everyone home all of time means less time for me to blog.

Yes, we are getting more snow tomorrow night with estimates between 10-20 inches.

OH yes, this is fun (serious sarcasm).

Ready for snow?

In case you haven't heard, the mid-atlantic area is expecting a very large snow storm this weekend. I have seen estimates of 20-30 inches of snow.

Guess what that means?

That's right, go shopping and stock up. Get ready for the snow.

Yesterday my first stop was Walmart, not too bad there. But my intention was to be a Costco at 10:00 when it opened. I arrived at 10:00. At first it was like the running of the bulls...everyone making a mad dash throughout the store. Once in the food section of the store, it became a game of supermarket sweep. People zooming up and down the isles loading their carts. I did not go in prepared, I wanted to look around, perhaps try out something new...not the day for that. I finally made it to the check out lines and I looked around. My cart looked pitiful in comparison to those around me...maybe I needed more stuff?

Next I proceeded to the grocery store, Wegman's to be specific, not the best choice in terms of crowds. The parking lot was loaded and once inside it was a traffic jam of people.

Not only do we need those kinds of supplies. We need to make sure we have things for Brayden; all of his medications and medical supplies. So Jeremy made a trip to the pharmacy.

To add in an extra bit of excitement we have to worry about loosing power. Where we live, it is not uncommon to loose power. The power never just flickers on and off. If it starts that we know that power outage is eminent. A few times we have lost power for several days.

When we first moved to Waterford, Jeremy purchased a generator. At the time, I thought it was a ridiculous purchase, I wanted to spend the money on furniture for the new house.

Since then the generator has become a trusted family friend. Especially since we have Brayden. We need to run his feeding pump (yes it has a battery but it doesn't last a day since it is running constantly). We need to run his suction machine. When he vomits, we need to be able to bathe him so it does not burn his skin. We need to be able to refrigerate his medications. We need heat because he cannot control his body temperature effectively.

While the generator does not run the entire house, most of the main floor is operational.

We have food, lots of comfort food, diapers, medications, medical supplies, ATV with a plow, shovels, ice melt and a generator (and I bought a couple of movies). And some boys ready to play in the snow!

We are ready...bring on the snow.

Another day another doctor

Today was a day to see the orthopedist for a check-up.

Today was also a day that school was canceled due to snow (although they totally could have gone to school, the roads are great).

Carter, Luke, Brayden and I trekked in to the doctor, about an hour drive.

This office is always crazy busy and lots of waiting.

Today seemed to be a day when everyone around seem to stare at Brayden. No words, just staring and maybe accompanied with the pity smile that people like to give.

Once we finally got to see the orthopedist, she said that he looks great. There is always concern with the hips of those with cerebral palsy as well as tightness in the legs. Brayden has neither problem. The doctor did mention that her notes from last visits stated that he was tight and may need Botox shots but as of today, that is not a concern in the least bit.

Brayden did get a prescription for his first pair of AFO orthotics. He does not need them on a daily basis but to be used in therapy for a stander. That is an appointment for next week...

Finding Balance

I just finished a book about a mom and her son (I am not going to mention the title because I did not care for it). The little boy's diagnosis in the beginning was not great...no walking, talking, seeing...really not able to do much at all.

The mom searched high and low for therapies, treatments and doctors that would help her son. She spends hours upon hours doing therapy with him each day. The father would come home from work several times a day to help with the therapies. They traveled many miles to try new therapies or remedies. She puts forth every effort to help her son. Even the book cover says, "every waking moment". It does help, he is able to talk some, walk with assistance amongst some other great accomplishments.

Sounds great, right? As first read it might be but this mom lost so many things. She lost herself, her husband, job, friends, any outside relationships...she was in this world just she and her son working on making him the best he could possibly be.

The book was meant to be uplifting about overcoming those big challenges but to me I found it kind of sad. Sure the little boy exceeded many expectations but a what cost?

I am sure that if you asked this mom she would say she would do anything no matter what the cost.

To me, there has to be some balance.

I have struggled with this. There are times that I wonder how much we could be doing. Would therapy everyday help? Should we try different therapies? Do we search out other doctors or alternative medicines? Brayden is the youngest of three. I cannot devote my every waking moment to him alone. But what if I could? Would that make a difference?