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.