It is the little things that consume my day

Do you have a day when you felt like you were busy, hardly sat down but not sure exactly what got done? Lots of little things consume my days for Brayden. Even if he is having a good day (no appointments, ER, etc.), the needs of his life leave us busy.

Yesterday,

• Woke up Brayden to get him ready for school, about a 45-60 minute process to have him loaded on the bus by 7:10 a.m. Just as the bus is pulling up, Brayden has a dirty diaper...unbuckle all of his chair. Attempt to change his diaper without completely taking off his pants because then I would have to take off his shoes and AFOs.
• Then get Carter off to school. Get Luke ready for the day, he goes to kindergarten in the afternoon so he is usually stuck with me running errands with me in the morning.
• Officially out the door and head to the pediatrician's office to drop off some stuff and pick up paperwork for Brayden. Talk to the pediatrician for a bit.

• Then drive to the lab to pick up our "poo collecting kit".
• Drive back to Waterford for Luke to catch the bus.
• Clean Brayden's linens from the morning's explosive diaper, scrubbing, soaking (and considering what can be tossed out)
• Get Brayden off the bus, into bed, suction stomach for 20 minutes, flushing tubes, changing, etc.
• On the phone for awhile trying to set up appointments, without success

• Brayden's feeding supplies are delivered. The glass bottles are broken and leaked all over everything. The broken bottles are his Microlipids (little jars of fat), the leakage over everything left a greasy film. Have to let those be for a moment.
• Head to the bus stop to pick up Carter and Luke.
• Homework time with Carter and Luke.
• Back to cleaning up the feeding supplies. Spread all the supplies out on the counter top and rinse them in the sink and use cleaning supplies to get off the greasy film.
• Calling the medical supply company to report the broken bottles and order more. First person on the phone transferred me, next person transferred me and then I was told to call the local branch...start all over...transfer, transfer and finally talk to someone. They will replace the broken bottles (I am thinking that they need to supply a person to come clean up the mess).
• Back to the laundry, one more scrub and wash, hoping Brayden's linens come clean.
• Wait, dinner, I need to make dinner.
• Eat dinner, clean up.
• Get Brayden ready for bed, then Carter and Luke.
• Load things up for school the following day.
• Crash in front of the TV.

That does not even include the seizures, a bit of vomit, several diaper changes, several times a day of flushing his tube, carrying him up and down the stairs, propping him in bed or getting him situated in his chair, hooking up his feeding,...

Start all over again the next day.

Help with the present for Brayden

Brayden sleeps with a Curious George every night. It goes with us on vacation and to the hospital. It is always on his left side and he scoots himself over until he is up against his George.

George's face lights up and plays soft lullabies.

Friends gave it to him a couple of years ago. I had no idea it would become his prized possession. It has been "loved" on quite a bit, spot cleaned many times from being in the hospital or being the landing zone of Brayden's vomit.

I cannot find it anymore (at least for a reasonable/non-collector's price, it was only $15, now is sells for the "collector's price" of at least $50). I would buy a couple of them. It is the Curious George Lullaby Lights Plush. If you happen upon it during your holiday shopping, let me know where and how to get it!

Or maybe he should try a glow worm...do they even make those anymore?

Black Friday Shopping with Brayden

I was not sure if Black Friday was even possible with three little boys...I am still not sure that it is.

Jeremy left for the morning around 5:00 a.m., I was awake. Then I realized Brayden was wide awake. I got a shower, packed a breakfast for the car, loaded up Brayden's feeding pump for the day, suctioned Brayden's stomach, gave him all his medications, changed and dressed him, printed out more store coupons, woke up Carter and Luke, dressed them, convinced them they could handle shopping because every store we made it through they could have a piece of candy, loaded everyone in the car (almost, had to head back to Brayden's room for a dirty diaper change...at least it happened at home and not the stores) and we headed to the mall all by 6:00 a.m.

We made it to four stores in 3 hours. Brayden's chair seemed to set off every store alarm. I have no idea why, we go to this mall all the time and it has never happened. Once in the stores, navigating through the people was not a problem, it was the isles stacked high and wide with all the items for Black Friday...not many spaces I could get through. Brayden chair was stacked high with the items we purchased. Not a fuss from him, only a couple of seizures and we had to find an isle big enough for him to stretch out his arms and legs during the seizure.

One bonus of taking Brayden, we get front row parking in the handicap spaces.

We made it home and crashed.

Pumpkin Pie a la Brayden

Brayden's art project from school, painting a pumpkin pie.

Laying on the "right" side

Brayden has always been leaning to his left, even as an infant. We prop, support, stretch and attempt to strengthen him so he does not lean to the left. We have started to notice a significant curvature to his spine (does not help that he is under weight and it protrudes too much). His physical therapist strongly encouraged us to make an appointment with his orthopedist. In the meantime, we are still propping, supporting...and laying him on his side to help. After a long day, he crashed in bed with George (melt my heart; and it took a lot of self control not to kiss or touch this sweetness).

Could it be the pancreas?

Brayden is not gaining weight.

This is a problem. As I said before, if Brayden does not gain weight, he may be pulled off the ketogenic diet. The ketogenic diet has been life changing for his seizure control.

Trying to figure out why he is not gaining weight has been a puzzle, despite increasing his calories several times. We have noticed that Brayden has been having 2-3 bowel movements a day, some days even 4-5. Several times it is quite oily (I know this is too much information about poo).

I called the pediatrician to talk about it. She immediately said pancreas. I asked her to call Brayden's GI doctor. The pediatrician talked to the GI doctor and I talked to both of them again, as well as the nutritionist.

Brayden technically has chronic pancreatitis. His lipase levels vary from high to extremely high but there have been no other problems. The pancreas sends out enzymes that help breakdown carbs, proteins and fats for digestion and absorption. If Brayden's pancreas is not working properly, then it may be a problem of his body not absorbing the food.

What does all that mean? I am not sure yet. Two things that we are looking into is collecting stool samples over a three day period (fun, right? do I have volunteers?). I am waiting to get the lab orders to find out exactly how they want to do it. The GI doctor is looking into giving Brayden pancreatic enzymes, which apparently are hard to do via a j-tube.

Gaining weight is needed and properly working pancreas is needed...

He can wiggle

In his sleep.

For a boy would does not move much, he sure did move. I found him this was one morning. He was happy but looking a little confused as to how he got there.

People in the Handicap Spot

We have a handicap parking tag for our car. It hangs from the rear view mirror. We only use it when we have Brayden with us.

The handicap parking spot is one of the few benefits that comes with a wheelchair. The space around the parking spot is key for us to load and unload Brayden, who is usually attached to his feeding pump, in and out.

We have all seen people temporally park (without a handicap tag) in the handicap spot while someone waited in the car or for a quick run into the store or unloading something.

Yes, I have been frustrated by it. Other times it does not bother me.

One evening, we arrived at the boys' football games. I drove up to the handicap spaces of the parking lot, the only spaces that were paved and not gravel. Thankful, that I did not have to navigate Brayden in his wheelchair over the gravel, I started to park. Then someone parked in the last handicap space just to load their family. I sat and waited patiently, we were not in a hurry.

The car moved and I parked. Brayden and I watched Carter and Luke play their football games. After the games, I was loading Brayden back into the car, when I noticed a piece of paper on the windshield.

It was an apology note for parking in the handicap spot to unload.

It was thoughtful of this mom to take the time to write the note. I did feel bad that she felt bad enough to write an apology.

Brayden loves parties

This past weekend we attended a wonderful birthday party for our friend. The party was at our favorite park, Clemyjontri. The weather was perfect. Brayden tried the swings and did not enjoy it, instead he opted for a nap during the party.

The birthday girl, who parents we know from college, was filled with giggles! She AND her brother are fighting a dreadful disease called Sanfilippo. At the party were several families with their special needs children, amongst other children as well. It was a beautiful sight but also humbling. Birthday parties are certainly time for celebration but it is also hard; realizing all the changes that have taken place over the past year...wondering what the next year will bring. As Brayden and I drove off, I had tears in my eyes. I cannot articulate my thoughts, emotions and feelings, other than to say that it was joyful and left my heart heavy. These families and children are so precious.

Some days you just get tired of it

Yesterday was NOT Brayden's best day...which means that we had a rough day too.

We started out to church. By the time we arrived at church, Brayden was not happy. Screaming, not just crying but SCREAMING, no matter what we tried. Jeremy and I took turns. Carter and Luke were enjoying their classes so we did not bother them. Jeremy sat with Brayden, I walked with Brayden...it started to feel like we were getting those looks like "This is church, can you keep you child quiet?" Believe me, we were trying. Jeremy finally gave up and sat in the car with Brayden, who was still screaming.

There are few things more exhausting than a screaming, inconsolable child who cannot tell you why they are so upset.

After our attempt at church, we went to grab a quick bit to eat. Brayden was still screaming on and off. He made his face red from crying and screaming so much. But he would dose off for a few minutes and then wake back up crying.

We made it home. Brayden straight to his bed. Jeremy asked how I was doing. My reply, "Brayden is one more scream away from his first ever spanking." (disclaimer: I would NEVER spank Brayden).

Brayden was exhausted and settled into his bed.

Wait, the day is not over.

Carter had his football team party. Jeremy and Luke had other plans so Brayden and I joined Carter at his party.

I arrived at the sports center, the location of the party. A friend offered to help me get Brayden inside. I said to him, "Thanks but I was relieved to see that there were no stairs into the facility so getting Brayden in will be no problem." I proceeded to unload Brayden and the food for the potluck.

The friend came back outside, he said, "Well, there are stairs. There is a huge flight of stairs up to the party room and no elevator. But I can help you get him up there."

Brayden's chair is a bit heavy and awkward to carry up a flight of stairs. So I carried Brayden, attached to his feeding pump and guys carried his wheelchair. Another gentleman came up to help and asked, "Wouldn't it be easier if we collapsed it before carrying it?" My reply, "Oh, if only I could but it is a full-on wheelchair." After the party, a couple of guys helped carry it back down.

I was grateful for the help but sometimes it is hard and feels like you inconvenience those around you when needing the help.

Thankfully Brayden was quiet for most of the party...he saved his crying/screaming for the car ride home. I was just tired by the time I got home. Simple tasks, that we do all the time, can become oh so difficult.

We had dinner and clean linens

Yes, we sat around the dinner table last night...all of us, at the same time and ate dinner.

Then Brayden was off to bed. Shortly after tucking him in for the night, he started vomiting. I dashed into his room. As he was vomiting, he was pooping and it was oozing out the diaper. I did not know which end to deal with first. I shouted for Jeremy and he came running in. We cleaned him up, changed the sheets, and tucked him in for the night.

I woke this morning a little before 6:00 and, as always, I checked on Brayden first thing. Before I got to his room, I could smell it...a big, bad diaper. I found that he had vomited again and was laying in a dirty diaper that had leaked out and completely covered one of his legs (can you hear me dry-heaving?). I start the bath and start stripping Brayden, trying not to get the poo anywhere else.

Once he was clean, I started cleaning his bed. Clean sheets on, I placed him in bed and proceeded to give him all of his medications. Only one goes into his stomach (g-tube), all others into his intestine (j-tube). Once the medication for his stomach was in, he started vomiting, requiring yet another wardrobe and linens change.

Now he is just laying on a blanket, with an undershirt. I am running the laundry.

Brayden is NOT sick. The vomiting is rearing its ugly head again. It has been back, on and off for a couple of months. The past two weeks it has really picked up. On Sunday he vomited 8 times. The explosive diapers...well that is just how he does it since he is on an all liquid diet.

The pitful thing is that he does not cry about the vomiting or the dirty diaper. He just lays in it until we find him. He only starts fussing when getting dressed.

Off to get Brayden clean linens...

Family Dinner Did Not Happen

Last night we planned to have dinner, as a family, all around the table at the same time. The first time in a few months. A busy fall and adjusting to school and sports schedule has pushed dinner time around.

Jeremy and I actually said, "Let's have a family dinner, finally."

That did not happen.

Late in the afternoon, I went to check on Brayden to see if he was still napping. I found him with his body contorted and eyes rolled back. He was seizing and this was not his typical daily seizure, it was something bigger. Carter and Luke had some friends over, I quickly sent them home. Rushed back to Brayden who was still seizing. I grabbed the Diastat, gave him the med, frantically called Jeremy and we decided to call 911. Carter and Luke ran over to a neighbor's house and I rushed around gathering Brayden's things while waiting for the ambulance.

The EMTs arrived, thankfully some guys that have been to our house before. Brayden was starting to come out of the seizure but he eyes were still rolling back. They loaded him into the ambulance and we headed to the hospital.

By the time we arrived at the hospital, Brayden has completely come out of the seizure and was just drowsy from the Diastat.

The ER doctor, whom we knew from previous visits, as well as nurses, greeted us when we arrived. It was decided just to watch Brayden for a bit to make sure he did not go back into the seizure.

Thankfully he did not. We were in and out of the ER in a couple of hours (perhaps Brayden's record time).

Jeremy and I sat in the ER watching Brayden...being entertained by a phone call from a friend who was trapped on his roof after his dog knocked down the ladder (he is fine) and Jeremy's sister, a nurse at the hospital, with, as always, enlightening and entertaining stories.

Brayden was looking good and we headed home. Carter and Luke eventually made it to Jeremy's parents house for dinner and they met us back at home.

Tonight, we are trying to have a family dinner.

Luke's thoughts on the "plan"

Luke is our middle boy. I am never quite sure what information he is taking in, how he interprets things and how his interpretation will come out of his mouth.


This past week he heard us talking about Helen Keller, about Brayden going to the doctor and needing to gain weight, amongst many other things, this is how it came out of his mouth:


Luke, "Brayden is going to the doctor today?"
Me, "Yes, so daddy will get you at the bus stop."
Luke, "Brayden needs to go to the doctor so he can get bigger."
Me, "That is one of the things we are trying to figure out."
Luke, "He needs to great bigger so he can talk to me."
Me, "Oh buddy, even if Brayden gets bigger he is not going to talk like you and I do. Like we talked about, some people have to learn how to talk in different ways."
Luke, "Maybe Brayden will talk like me when he gets bigger."
Me, "God has a different plan for Brayden. A plan that will be learning different ways to communicate and we will help him figure that out."
Luke, with a big sigh, "Well, that plan is NOT working."


He is trying to understand Brayden. He loves him dearly and wants to be a big brother to him. He is slowly navigating that role and interpreting how it fits into his life...as are we.

Weight gain

On a rainy afternoon, we headed downtown to Children's. An afternoon of lab work and the keto clinic.

Upon arrival, the parking lot was full. We were directed to park in the taxi/bus drop off. Unloaded and headed into the hospital.

Go to the lab.
The lab tech for Children's recognized Brayden and remembered that he was a difficult stick (the last blood work was with her and did not go smoothly). She did not even try this time and immediately got the head honcho to come get Brayden's blood work.

Next stop the keto clinic.
A few things to do at the clinic. First the dreaded weigh in...and no surprise Brayden has lost weight. Next, meet with the neurologist heading up the keto clinic. Finally talk with the nutritionist.

How did things go?
Brayden's seizure control is great. The best it has ever been.
Brayden's ketones and blood sugar are not where they need to be.
Brayden's weight is slowing falling off the growth chart.

Brayden has to gain weight otherwise, he may be pulled off the keto diet. We do not want him off the diet, it has been life changing for his seizure control. We are tweaking his food (a formula mixture of Elecare, Ross Carb-free, Microlipids, NanoVM and Water) to get in ALL of the calories at a flowrate his body can tolerate.

We have been trying to increase the amount of formula for his intake per day but the increase has been causing him to vomit more frequently.

Don't be fooled by his chunky cheeks, he is really a skinny little guy.

Paying for the Movies

This week the boys had a couple of days off from school. It was actually quite fun. One day we went to a bounce house and then to the movies.

I loaded up the three boys, headed to the bounce house first. I paid for Carter and Luke and they got their wristbands to go bounce. Brayden and I followed them around. Brayden did hold a ball and sit under a bubble machine.

A random note, a little girl came running by shouting at Brayden, "What's wrong with him!?" As the parents just looked on. I had nothing to say so I did not say anything...we were having fun. I am learning to ignore some things and answer things when it is the appropriate time.

After that we headed to the movies. I came up to pay at the theater, not sure the prices for the ages so I asked. I paid for all four of us, grabbed some snacks and settled in for the movie.

Here is the thing, I have no problem paying for Brayden to be a part of anything. But I did find it kind of funny to pay for him at the movies. The theater had NO place for wheelchairs, so he hung out in the isle blocking the view of anyone behind him. Then not to mention he cannot see anything because he is blind and I was praying the entire time that the loud theater would not freak him out. Thankfully he slept.

After the movie, we loaded up the car and headed home. It was nice to have all three home without school or plans for the day.

Helen Keller, Carter and Brayden

As part of school Carter studies famous Americans. The class has been discussing Helen Keller.

While at Carter's parent-teacher conference this week, his teacher mentioned that Carter was sharing a little bit about his brother Brayden during the discussion of Helen Keller...something about Brayden being blind and having things with braille.

Brayden is blind (not like Helen Keller) and several of his "toys" come with braille instructions or pre-braille activities. Carter gathered a few things to take to school so that he could share with his class. Carter is proud to be Brayden's brother. He talks about him and has no problem sharing or explaining Brayden to people.

We were sitting at the bus stop this morning talking about Helen Keller and Brayden (and his little friend Daniel). He was excited to share. Then he jumped out of the car and on to the bus.

I was still pondering the extraordinary life of Helen Keller. Now having a child with special needs, I can barely comprehend the amount of dedication that was put into her life. Her parents pursued options for Helen when there were not many in the 1880s. Then Helen's instructor, the infamous Anne Sullivan, to teach her...finding a way to communicate with her...a way for her to learn. In the 1890s, the deafblind Helen Keller, graduated college, with her instructor right by her side. Then to become a writer, activist, world traveler...she was deaf and blind. She is even on the Alabama state quarter!

I have a entirely new appreciation for the accomplishments of Helen Keller AND for her parents and instructor Anne Sullivan.

Brayden's Halloween

Brayden had a great Halloween weekend. He was a hit with his pumpkin jacket and pumpkin lights hanging from his wheelchair (that his nurse got for him).

First, our church's Trunk or Treat on Saturday night. It was cold and windy but the boys did not mind. And Brayden was stuffed with handwarmers...oh, he stayed warm.

A little photo op with his friend Daniel.

Halloween night was in the historic village of Waterford. You HAVE to check out the family blog for all the details.

Everyone stopped to talk about Brayden's pumpkin lights. He liked them too. He was glowing!

A little fun with his friend Justice (they ride the bus and go to school together).