School is so beneficial

I spend my Sunday nights getting ready for the school week ahead. It takes a lot of get three boys ready for their school week...each in a different school and all of their activities.

Carter is at our local public school in 1st grade. Luke at a church preschool about 20 minutes away. Brayden at a public elementary school about 15 minutes away; he is in special ed preschool.

This school year has been interesting. For one thing it has affirmed my thoughts that school is extremely beneficial for children (a.k.a mommy not being the teacher). While I know that everyone needs to choose their child's educational path based upon their families needs, for me sending them to school has been a great decision.

Carter's reading and math skills have grown leaps and bounds. His teacher can get him to read some great stuff. When I read with him at home he gets frustrated. Carter has become a leader in his class and learning to choose good friends. Our rule...you do not have to play with everyone or be their friend but you have to be kind and respect them.

Luke is ridiculously ready for kindergarten. His preschool has been great. He educational skills are kindergarten ready. He is learning self control. He is a well behaved child but tends to speak his mind...whenever a thought comes...which means he talks a lot. Luke has to learn the appropriate time to talk and taking turns.

Brayden has been maturing tremendously. He tolerance for new things, they do not frazzle him. The teacher, aids and therapists do all sorts of activities with him...things that not in a million years I would try with him or even expect him to be able to participate.

Bottom line, having teachers and others adults at school has huge benefits. They expect different things from our children. They see them differently than we do as parents. They push them in a way that I could not being a mom/teacher. They have tremendous patience and many innovative ways to reach our children.

Being around other children on a regular basis has many benefits. Not only the sharing, taking turns, working together but comfort in having friends. Brayden even seems to recognize those in his class.

I am so grateful for our teachers!

Busy week

I have not blogged much this week because things have been busy.

A good busy, for the most part.

The week started with a meeting about developing a fully accessible park in our county. I have been thinking, researching, googling a million ideas. We met with a playground equipment company to help give us some ideas and hopefully direction. Still so many things to be decided to even decide if we can pull this off.

On and off throughout the week, I have been on the phone with Children's. We are now scheduled for Brayden to enter the hospital in April to start the ketogenic diet. He will be in the hospital a bit longer than typical keto kids because of his G-I history and pancreatitis...all of which will be watched closely.

Because Brayden's medical needs have changed so much in the past couple of years, the waiver that he is currently on is being re-evaluated, with the idea to update to his current medical status. This is a pain. No one seems to know the correct process. I have talked to countless people...way too much time on the phone.

Yesterday I had a meeting to discuss ideas about collaborating on a book. A book that would share three stories. Each story from a mom of a special needs child and navigating their life. I am not sure where this project is heading but it is a possibility.

Not to mention our regular activities for Carter and Luke...Brayden's appointments, etc.

Today, I will actually run to grocery store and some other errands and it happens to be the day when it is pouring down rain!

Like my shadow

Sometimes I see a lot of it and sometimes very little but it is always with me.

I heard this phrase last week and it stuck with me.

I was out to dinner with some friends last night. We have been talking about sharing our stories and the best way to portray our lives.

One of the most important things we realized is that our life is not all about grief in dealing with a severely disabled or medically fragile child. It is not a moment that we need to "get through". It is not a challenge/adversity that we come out the other side of and feel free or without struggles.

Many of us have received books on grief, praying through the tough times, getting through the storm...all of which have their time and place. It is certainly something that is part of the process but it is not something that goes away or even runs our life. It is hard to have your child struggle with basic things like eating or motor skills. But when you child snuggles in to you, it is a moment that you would not trade for anything.

We have a very strong ebb and flow in our life. Sometimes it is heavy with grief and struggles; other times with tremendous joy. Sometimes things are really rough and other times things are calm. We miss the things that we do not have but we love the things that we do.

The sorrow and hurt can creep up when you least expect it. Sometimes I find myself consciously pushing away those thoughts. Then, at times the struggle is in the obvious, when unwanted test results come back or having your child go through yet another medical procedure. It is hard to see you child put through so much and there is not much you can do as a parent to stop it.

We appreciate the little things in a entirely new way and savor it all. This life has changed so many of us...made us better people...love a little more deeper...more reliant on our faith. Having those struggles does not mean our faith is lacking it is just part of our life moving forward.

Having a child with severe disabilities, a disease or medical problems has its struggles...for me, it is like my shadow, some days I see a lot of it and sometimes very little but it is always with me.

Luke and Brayden

Luke asked me if he could get Brayden off the bus. I said yes. He ran outside and waited at the end of the driveway. I yelled down to him that the bus was not coming for another 10 minutes. He said that he would wait and watch so he could be right there for Brayden.

And he pushed Brayden up to the house and on to the lift in to the house. Luke told me that Brayden preferred him to do it rather than mommy.

A day later, Luke decided that he wanted to play board games. I told him that I could not because I had to do some things around the house. He quickly replied that he did not want to play with me but Brayden.

They played a round of Candyland and Guess Who. Luke encouraged Brayden right along, "Good job Brayden, you are winning!"

Luke is the one who most fills in for Brayden's lack of words. Sometimes proclaiming that "Brayden wants to watch a movie!", really it is what Luke wants. Brayden does not seem to mind at all and likes the attention/entertainment that Luke provides.

This is NOT what I expected my life to be

We all have expectations for our lives.

I mentioned that I was reading through old blog posts and emails, I realized I wrote a lot about expectations, things that were happening that I did not expect.

Here are some. I am sure that you can relate to at least a few of them.

• I never expected to have a child with severe disabilities
• I never expected to know this many doctors or hospitals so well
• I never expected to have medical equipment as part of my home and daily life
• I expected all of my children to talk, walk, hug, (eat, not by tube), etc.
• I never expected to hurt this deeply
• I expected myself to be a mom that could handle it all...I cannot
• I expected to be there always for all of my children...Carter and Luke sometimes get lost in the chaos of things, even though they are understanding about it all
• I expected my child to be able to cuddle...Brayden did not until 21 months
• I expected to go on many vacations as a family...that left stress at home
• I expected doctors to have answers and not be the one making major medical decisions for my child
• I never expected to need this much help. I was a social work major in college, the idea of helping others and I am the one getting help from every direction.
• I never expected asking for help would be so hard
• I expected certain people in our lives to help (I learned that my expectations for them were apparently too high)
• I expected my neighbors to be snobs (sorry gals) but thankfully I was seriously wrong
• I expected Jeremy to feel the same as me, after all we are in this together. However things that bothered him, did not bother me. And things that bothered me did not bother him. Which turns out to be good because then we could support each other
• I expected to know how to pray (I will have to blog about this one later)
• I expected prayers to be answered...at least to find an end to the vomiting

I could go on and on. Clearly this is not what I expected my life to be.

Thankfully God surpasses all of our expectations and I am learning that a little more each day.

Have I let go of my expectations? I wish I could say yes but I am trying...

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?

Luke the Brave

I am a mom who tortures my kids with taking pictures...so you might think this is Luke "smiling" for yet another picture. But it is not. He hurt his eye.

We had a brief moment this week of warm sunshine so I sent the boys outside. Carter, Luke and the dog were on the trampoline. I heard a cry erupt from outside and I found Luke. I assumed he was tired. About an hour later his eye was swollen and he was complaining about it (he never complains). He even asked to go to bed at 5:30 p.m. so he could close his eyes.

He went to bed at 5:30 p.m. and woke up the next morning still with the eye problem. He was squinting and would not even open his eye.

We went to the pediatrician who saw a scratch on the cornea. They sent us to the ophthalmologist. He had something in his eye, they got it out. He also scratched it so they gave him some ointment. We will go back on Sat to have him checked again.

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Luke was barely bothered by any of it. He knows the routine. He has been to so many of Brayden's appointments that he knows what to expect. He knows the pediatrician and the nurse (really well). He has been to Brayden's ophthalmologist a few times so he knows. Doctor offices are just a part of our life.

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A couple of weeks ago, Luke came with me to another appointment for Brayden and the receptionist suggested Luke not come back and stay in the waiting room with Brayden's attendant. Little did the woman know that Luke has sat through so many doctor appointments that he knows what behavior is acceptable. Luke (and Carter some too but he has been in school) has been to the pediatrician so many times, neurologists, two different GI offices, ENT, cardiologist (he likes to see the echo cardiogram), geneticist, orthopedist, many labs for tube replacements or scans, 4 different hospitals, the ER for himself and Brayden...he knows the routine and it doesn't scare him. He has preferences about which places he likes best based on availability of cafeterias, video games, movies and TVs.

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He also knows how to work the system. He knows which places have stickers or lollipops. He got a sticker at the pediatrician for his eye and a lollipop at the ophthalmologist. And tried to push his luck when he asked for another lollipop at the pharmacy (we are there almost once a week and they know us by name).

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His big treat for being brave during his eye adventure was to pick where to have lunch...he picked Costco. He told me, "We can go through the store first for the snacks then get a berry smoothie."

Why I am not...

...the person to talk to a pregnant woman.

Several months ago I ran into an old friend (I did not blog about it then because I did not know if she read this blog and I wanted some time to pass so that it was not obvious who it was). She was pregnant and due any day with his first child. I was standing there, with Brayden, catching up with her, talking all about the excitement of pregnancy and things to come.

After we said goodbye, I realized that the conversation felt awkward for me. Not once did she talk to Brayden or even acknowledge his presence. It was like one of her fears while being pregnant, was right in front of her...a severely disabled child.

I have come to realize that I am not the best person to talk to a pregnant woman.

Before I go into all my reasons, I want to give a disclaimer that it is all worth it to have a baby in your arms, no matter what happens.

I do not really enjoy being pregnant. I spent way too much time sick and sick enough to require quality time with IVs and medication. And it happened with each pregnancy.

Then after the baby comes, I am a mess. No sleep, your body is a mess, emotions...everything just turned upside down. The newborn phase is not my favorite time. I do not feel like myself until the baby is at least 3-4 months old.

But why I really have a hard time talking to a pregnant woman is two reasons.

First, I always hear people say, "It does not matter if we have a boy or a girl, we will be happy as long as it is healthy." And what if the baby is not healthy? Then what? Would you love that baby any less? I know that people do not mean anything bad by making that statement but just stop and think about it.

Second, we did not know anything about Brayden until after he was born. All the pregnancy tests looked great...the ultrasound, blood work, etc. all looking normal. Even his delivery day things looked fine. The delivery was the easiest of all three boys. We thought Brayden was a healthy baby boy just like Carter and Luke. It wasn't until about 24-48 hours after his birth that the doctors began to question his head size and then proceeded with all the tests.

I rejoice with each person I know is pregnant. I am excited for them. I know that they will love the baby and their experience in their own way. But please just don't ask about my experience you might not want to hear it.

Random things on my to-do list for a week

There are many things that I do for my children during the week. Some of which I expect to do as a mom but these are things I would have never guessed.

I have to clean and dispose of this. The container for Brayden's suction machine. It is the "juices" that get sucked out of Brayden's stomach. This is a couple weeks worth. It is stomach bile and saliva. I have to say my gag reflex is a bit activated when I have to do this.

Then on my shopping list are these. Men's guards...like a big maxi pad. What do we use them for? Well, to line Brayden's diaper at night. He is hooked up to a feeding pump all night and if anyone gets constant fluids throughout the night, then you guessed it...what goes in, comes out. Just a regular diaper does not hold enough so another mom of a special needs boy suggested these pads to help. And they do help.

Oh the things we do...

School! Progress!

These school pictures are coming for me at just the right time. I was starting to settle into the idea that Brayden may not progress much more developmentally. He has not been able to do much. He can get his hands to his mouth but nothing else seems intentional. He eyes do not seem to focus on much at all...I have no idea what he can see, if anything at all or make any sense of it.

Brayden's teacher sent us more pictures from school. She says they are starting to see a pattern for activating the switches...He brings his hand up to his mouth and then...

Down to touch the switch!
The teacher, aids and therapists help position him best to help make this happen, they have put a pillow under his arm to assist him.

And here he is checking out the dinosaur.


And then playing dress up. They put bright colors on him to see if he will look at himself/the bright colors in the mirror. And he did! He is looking pretty fly!

Relaxed with a side of snore

How do we know that Brayden enjoys the bus?

He is relaxed, really relaxed, when he arrives home.
Many days he comes off the bus like this (turn up the volume to hear his snores)...

Relaxed with a side of snore from Carrie Jenkins on Vimeo.

This is from one of those crazy cold days last week. He is so bundled up, I guess the only option is to sleep.

The not-so-therapy dog

We have lab. She just turned 1.

Labs are one of the most common dogs to be used as assistance dogs. The assistance dogs are used in hospitals, schools, homes, etc. We just saw one in WalMart as a seeing eye dog. We saw another assistant dog being trained at a museum. A therapy dog at the hospital. It is amazing what these dogs can do.

Well that is NOT our dog. She is a hunting dog and amazing at it at just 1 year old (so I am told because Jeremy is the one who takes her, not me).

It is easy to say that our dog can be my biggest stress of the day (although she is getting better). For example, the past weekend I was getting everyone ready for the day. I ran upstairs to grab some stuff to get Brayden's meds. I came back downstairs and the dog ate the syringe (not one with a needle) with one the seizure meds. I was worried for the dog...what could the seizure med do to her? Thankfully nothing.

The dog does not like Brayden's toys that make noise. She will take them. When she touches them and the toys makes its sound, it startles her and she may try to eat it, so we have to put up those toys. She loves to eat stuffed animals so those are put up when she is around.

She does pay a little attention to Brayden. She gets right in his face, nose to nose and Brayden lets her...I do not. She has started to share her bones. A few times I have found her piling bones on Brayden's lap and one time on his wheelchair.

The dog adores and obeys Jeremy; me, she ignores; she loves to chase and be chased by Carter and Luke, and Brayden, well she is not sure what to make of him yet.

Her favorite playmate is Luke. They do laps around the house. Here they are rolling around the kitchen together, and yes the picture is blurry because they are that out of control...I cannot wait for warm weather and they can be outside.

Happy Birthday Gander the dog!

Food is good...so good

I went to the grocery store today hungry... very hungry. I got all the things on my list but then I passed by a treat. I have not had these in years, many years. Carter and Luke have never had them. For the most part the boys eat organic/natural and healthy foods, they have no idea what ho-hos are or twinkies are; so I justified buying them because I thought that the boys have no idea what real "quality" junk food is and how tasty it can be. It could be a nice treat (and it was on sale).

Notice the box was open. I ate one before I got home (it did not taste as good as I remember).

Brayden has never really tasted food. He had a brief moment of about 2-3 weeks when he got about 1-2 tablespoons of baby food mixed with cereal and water and one vacation where he ate a little bit of sweet potatoes. It has been almost a year of not one drop of food going into his mouth.

You can imagine life without food?! Life without the joy of getting a sweet treat or sitting down to eat your favorite meal?! Food is such a big part of our lives and for Brayden is just a tube with formula...boring.

Hold My Heart

Last night I was driving home after a great dinner with some gals from church...I was in deep thought.

The past couple of weeks I have been catching up with lots of people. Having a child with big medical needs not to mention special needs has thrown us into this community that is full of pain, praying, unanswered prayers, miracles and so many things that I could not begin to articulate. I talked with a friend that both her children have a terrible degenerative disease, another whose son has a brain tumor, a new friend who son is constantly in and out the hospital with problems similar to Brayden, an friend of the family who husband is battling a brain tumor, not the mention all of the blogs that I try to catch up on. I also starting reading a memoir of a mom whose son was diagnosed with some of the same things to Brayden.

There is so much pain. There is so much sickness. There are so many hurting, fighting and praying. So many questions and searching for solutions.

My conversations with them are about our experiences with doctors, hospitals, therapies, medications, frustrations...trying to find joy and humor in many of those circumstances. I am honored to be able to talk to them about it all.

I was thinking about all of these people, praying for them.

I heard this song on the radio last night as I was driving. It says what I would be trying to say.
How long must I pray, must I pray to You?
How long must I wait, must I wait for You?
How long 'til I see Your face, see You shining through?
I'm on my knees, begging You to notice me.
I'm on my knees, Father will you turn to me?

One tear in the dropping rain,
One voice in the sea of pain
Could the maker of the stars
Hear the sound of my breakin' heart?
One light, that's all I am
Right now I can barely stand
If You're everything You say You are
Won't You come close and hold my heart

Please watch both videos. It is good.
Behind the Song


The Song

Did you ever get beat up by Elmo?

Brayden did.

Not really.

At school, Brayden has been working on pushing a switch. The switch is a large button that is attached to a toy. The child has to push the switch to make the toy go.

Brayden had Elmo.

According to the teacher (who sent us these photos), he was looking right at Elmo and pushed the switch by himself a few times! He seemed to be enjoying it. Cool, right!?

Out to lunch

I decided to be brave today. Do a little shopping and get some lunch with all three boys. Just me and my boys.

I did the shopping but purchased nothing. The boys did fine.

Then lunch.

We pulled up to the restaurant. Only one handicap space for the entire place and it was taken. I am not good at parking our Denali and leaving enough space to get Brayden in and out, attached to his feeding pump, and into his wheelchair.

Did I mention how cold it is here? The wind chill?

I parked the car and we unloaded. We headed to the front door. Carter and Luke used all their muscles to pull open the giant doors of the restaurant. They were helpful. The young hostess inside was not. She was just watching us as we struggled to prop the doors open and get Brayden inside. Apparently it did not occur to her to help.

She took us to our table. The tables were so close together that there was no way for Brayden's chair to fit. So we just took over the table next to us.

I had to go to the bathroom. How can I go the bathroom with three little boys, one of which is in a wheelchair, in a restaurant?

I did not go.

But guess who did. Brayden. He was grunting like a champ. Then came the smell. He gets a little rowdy when he has a dirty diaper. He gets loud because he wants us to know.

I cannot change him in the bathroom. He is too big for the changing table and...well those things give me the creeps. Changing him in the trunk of our SUV is possible but not when I would have to take all three boys outside just to change him.

Did I mention how cold it is here? The wind chill?

Needless to say, we ate fast (I changed Brayden at home...I know, terrible).

While we were eating a couple (assuming they did not have children) were going to be seated right by us. The hostess started to seat them. The gentleman looked directly at our table and asked to be seated somewhere else. The hostess pointed them to the booth on the other side of us, he said no. They sat somewhere on the other side of the restaurant.

Was it the smell or the noise?

We left the restaurant but it was more like an obstacle course. The place had gotten a bit more busy. I took out some people's chairs on the way out and some toddlers in the highchairs.

We made it home.

Next time, I will do take out.

School Update

Brayden has been back at school this week after a long winter break.

He did great transitioning back but by Wednesday he was tired and incredibly grouchy, bordering on inconsolable.

This week we had a school meeting...we do every month. The teacher comes to the house to review the IEP (goals for school), make changes and just to update things happening at school and/or home.

Let me just say that it is a HUGE and I mean HUGE accomplishment for Brayden (and us) to send him to school and even on a BUS! He has been doing great and by great I mean that he is not fussing on the bus or school. He has been content, meaning he sits there without compliant.

Brayden gets occupational, physical, vision and now speech (not for talking) therapy. While he seems to tolerate everyone, the consensus it that he does not seem to be connecting. He is there but not there. The teacher wants to find his "thing" that gets his attention, whether that is music, lights, a toys or whatever. Something to motivate him, that he likes.

I would like to know that too.

Where's Waldo...I mean Brayden

While I was getting Brayden's meds ready for the day, Carter dug out all of the stuffed animals in Brayden's room because he thought Brayden wanted to see them.

Can you say smothered with love?

Choose your own adventure

Do you remember the Choose Your Own Adventure books? I just saw them today in the bookstore.

To refresh your memory...

You are hiking in Snake Canyon when you find yourself lost in the strange, dimly lit Cave of Time. Gradually you can make out two passageways. One curves downward to the right; the other leads upward to the left. It occurs to you that the one leading down may go to the past and the one leading up may go to the future. Which way will you choose?
If you take the left branch, turn to page 20. If you take the right branch, turn to page 61. If you walk outside the cave, turn to page 21.

I always thought they were so cool. So many choices and lots of different endings.

Although I did not read them entirely the proper way.

I would make a choice, skip ahead to see if I liked it. If I did then I would continue on, if not I would make another choice. I am kind of like that with books. I am the person that skims through the ending when I get curious. I still read the entire book, I just like to know where the story is heading.

Oh, if only life were like that. I mentioned that we have some changes coming up. Still many unanswered questions. Mainly, is Brayden going to get better, worse or stay the same...what are we dealing with? After many months, many doctors and many tests, we are no closer to answering that question, no diagnosis. The doctors give us options and leave some of the decisions up to us. I would like to skip ahead just to skim through what would happen when making those different choices or at least have the doctors be able to give us a glimpse into what may come. But they have no idea.

I do feel like we are making informed decisions so for now we just turn the page.

I do know that only One knows. Let us fix our eyes on Jesus the author and perfecter of our faith. Hebrews 12:2

New Year New Things

Happy New Year to everyone!

I am not one for New Year's resolutions...I will get done what I need to get done this year. Having children kind of makes you take things day by day and Brayden makes us take things moment by moment.

This New Year will be bringing about some big changes for Brayden. Things that will (hopefully) be happening in the next couple of months. I do not want to go into details yet, too many things to iron out and try to make smooth transitions with the least amount of conflict. But I do ask for some prayer as we move ahead.

The changes are things that we have to do, things that the doctors want us to do.