Back to the lab...again

Would you believe the lab messed up again!?

I am calling out the lab this time. LabCorp in Lansdowne lost our first stool sample. A large bag filled with 7 containers, one envelope and lab order forms, were all lost without apology or explanation.

Second time I drop them off and hand the stool sample to the exact same people. A week later, we get most of the results back. Brayden's pancreas is not working properly, he is not absorbing food...thus a plausible reason he is not gaining weight/losing weight.

I get a phone call for the doctor's office. The remainder of the lab tests were done incorrectly. They froze samples that were not supposed to be frozen and did not freeze the ones that needed to be. Then the lab tried to say that the patient did it wrong! We do not do any freezing at home, we collect and hand it over to the lab.

We have to collect stools samples again...not as many and we are taking them to a different lab. And I am making phone calls to complain about LabCorp.

We are also waiting for the GI doctor to decide about the pancreatic enzymes. The doctor is currently at the hospital for the week and getting back to us next week. The pancreatic enzymes should help with food absorption. The question is what to give since Brayden only takes things by J-tube, into his intestine, which is different than going into his stomach.

Time is ticking by. Brayden is not gaining weight and the big appointment to decide about the keto diet is in early February.

Going to the Movies...the day that did not end

Carter and Luke have been wanting to see the new Yogi Bear movie. No better time, than winter break to get out for some fun.

We all loaded into the car; Carter, Luke, Brayden, his nurse and me. Off to a newer theater with very comfortable seating and nice places to park wheelchairs. Snacks and drinks for the crew and we nestled in for the movie. The theater room was cold...like heat not working cold. Luke and I ran out to the bathroom during the movie and lobby was warm, back in the theater, very cold. Everyone keep their winter coats on and Brayden did too, with a blanket over top.

After the movie, I kindly spoke to the manager. He tried to tell me that the theaters were all set to 72 degrees. I politely disagreed with him and encouraged him walk into the theater himself to feel the difference. I explained to him (very nicely) that I tried to treat my children to a fun day at the movies and they did enjoy the show but we all were cold and Brayden did not control his body temperature well and was concerned about him.

The manager disappeared, spoke to the teenager that walks the theater during the shows and came back to tell me that the staff did notice the room was cold. Then he handed me free movie tickets.

Little did I know that was the least of my worries. I run out to start the car and realize my tire it flat again. I am about 40 minutes from home. This little town center is new and no gas station yet. I called Jeremy, then I called AAA. I have everyone in the car. Brayden was just hanging out in the car seat and the boys were playing their DSi. We waited about 30 minutes when the first AAA guy arrived. He could not handle our type of tires because they were 24s and speciality...he did not have the right equipment. He left us and we waited for either a tow truck with a cab big enough for all of us or a person equipped for our tires. We waited another hour. Finally the AAA man arrived, jacked up the car (with the boys inside) and put on the spare. Problem is the spare is smaller than the other tires. The busted tire was put in the back of the car because he was not sure it would fit properly in the spare space. Where to put Brayden's wheelchair now? Half of the wheelchair, on top of the busted tire; half, in the front passenger seat. A few hours into this tire ordeal.

While all of this was taking place I was calling around to the place we purchased the tires, trying to find one of their locations close to us. They assured me that any of their locations could take care of us.

I delicately drove my car to the car shop. Upon arrival they tell me that they cannot service wheels that size...umm you sold us those tires!? Then tell me that I should not drive my car around because the different size spare can do some serious damage.

Trying not to freak out on them, I ask for their help in finding a place close by that could. A few miles away, a different tire shop. I get back in the car with my crew (thankfully all still pretty calm) and head to the next shop. We arrive and there is NO place to park.

I pull up right in front of the door. I walk inside and immediately I am scolded and told to move my car. I grasp the counter and with all my strength, try to nicely say, "I am hours into a car ordeal. First AAA guy could do our tires, so we wait for the next guy. Finally get a spare, then the place we bought our tires cannot service us and now we are here. I am driving around a car that I should not drive and I have my three little children in the car, one who requires a wheelchair and my son's nurse is with us too. I need someone else to move my car."

We all unload and someone moves my car. We walk next door to a restaurant, eat and park ourselves for about an hour when I get a call from the tire shop. The wheel and tire are beyond repair. I was told I could drive my car on the spare but only home and back when the new wheels and tire are ready.

We left the house about 10:00 a.m. for a movie. We arrived home about 5:00, saw a movie, lots of car repair people, with a car I cannot drive. The boys all made it through the car chaos. Brayden was on his best behavior (the day before and the day after he spent screaming), thank goodness.

Looking forward to some "quality" days at home, waiting for the call we can bring the car in for the new rim and tire.

Brayden's Christmas Day

Started at 3:45 a.m. Brayden was wide awake and did not go back to sleep. Jeremy and I tried to but we heard to sounds of two little boys talking. Thinking that it was their excitement for Christmas morning, we stayed in bed and listened. Then Carter appeared saying something about Luke asking him to clean up his mess.

Jeremy and I got out of bed (sometime around 5:30 a.m.), walked in to Luke's room and found a trail of dirty clothes leading into the bathroom. Luke was standing there, upset. He got up to go to the bathroom and as he said, "It tricked me", when he went to the bathroom. Without going into details, there was a mess that required a shower.

Meanwhile, Brayden dosed off for about an hour or so. Carter and Luke looked through their stockings. Jeremy fixed breakfast and I did Brayden's morning suction, changing, meds, etc. By 6:30 a.m. we were all in the family room opening presents.

Brayden was still not quite awake but I was determined for him to be with us on Christmas morning.

After tearing into the presents, we were loading up for the drive to my parents, when we noticed my car had a flat tire. Jeremy drove over the mountain to a gas station to fill it up with air, thinking that these special tubeless tires were not handling the cold well.

We finally made it to my parents house. Brayden's blood blister on his favorite finger had tripled in size over night. It was massive and looked like his skin was going to burst. The finger was incredibly painful and throbbing. As I was putting Brayden into his chair, I saw a stream of blood running down his arm and mine. The blister popped and was oozing everywhere. Brayden handled it pretty well. And then a couple of diaper blow outs that could clear out any room...

As everyone started gathering in the family room, Brayden was getting restless. He seemed tired and overwhelmed with all of the commotion. I popped open a portable bed for him and put him in a nearby bed room. That did not work; he fussed, thrashed his head side to side...he knew this was not where he wanted to sleep. He did settled down for an hour, not sleeping but just resting.

I insisted that Brayden was going to participate in opening his presents. So after his rest time we put him in his chair with the tray and started with the presents. A couple of gifts, he was concentrating on looking at them. He did really well. And wished everyone a Merry Christmas with his switch.

After presents, it was time for dinner. Brayden tried to sit at the kids table but apparently he did not care for their chaos but he started crying and once we moved him to another table, he stopped.

A long day, the boys were showing it...Brayden cried most of the way home. Crashed in bed and probably one of the few children thankful Christmas was over and only comes once a year.

For more Christmas fun, check out the family blog.

Brayden's Christmas Eve

Brayden's Christmas Eve started with a quiet morning at home, when I noticed a massive blood blister on his favorite finger (the one and only one he uses for comfort). It was huge and painful. I wrapped up his hand to prevent him from bothering it...which irritated him greatly.

By the afternoon we were all at Jeremy's parent's home for food, fellowship and presents.

All the boys dressed nicely because later in the evening was church. On the way to the Grandparent's house, there was a smell in the car, Brayden had a stinky diaper. We were still 20 minutes from the house. It was very cold and windy...I decided not to stop...praying that there was no leakage on the good clothes. Meanwhile, the feeding pump keeps beeping and giving a message of "flow error". Nothing like a stinky car (windows cracked with cold air coming in) and a constant beep of the feeding pump, to get you in the Christmas spirit.

We arrive, change diaper, fix feeding pump and breathe. Brayden is doing pretty well, parked by the fire, with his switch that says "Merry Christmas"...recorded by Luke. Brayden's cousin, who is only a couple weeks older than him, was happy to help him with his switch.

Brayden makes it through the dinner, singing, gifts and chaos without much a complaint.

Next, we go to church. Carter and Luke are singing in the children's choir so I park myself and Brayden in the front row so I can see the boys and take pictures. Jeremy is helping hand out candles, programs, etc out in the lobby. Carter and Luke are off in the green room getting ready to come on stage. The intro music (to let people know the service is about to start) is playing...the bass of the music is deep and loud...that kind of bass I can feel in my gut and apparently so can Brayden because once that bass started, he started crying and would not stop. The church is filled with 1000ish people and we are in the front row. I push Brayden to the back of the church to quickly hand him off to Jeremy out in the lobby. As I am walking out, my heel gets stuck in the door threshold and Brayden keeps rolling...thankfully right to Jeremy.

I quickly rush back to my seat, to make sure I do not miss Carter and Luke's performance but I am disappointed that Jeremy is tending to Brayden and will miss it. Next thing I know, Jeremy is next to me...whispered that a friend came out to sit with Brayden so he could come in. Carter and Luke sang their little hearts out and then joined me in the front row. Jeremy was back out in the lobby with Brayden...it would be nice to sit all together but that was expecting too much.

Brayden then chilled in the car while we drove around to view Christmas lights, which he likes, as well as Christmas bows.

9 degrees

Why would we take a child who cannot control his body temperature to a place that is 9 degrees?

For Christmas fun, of course. We headed to the Gaylord National for their annual event ICE. Rooms and rooms filled with ice sculptures. This year the theme was the Grinch Who Stole Christmas. Brayden was equipped with several layers of clothes. Hand warmers in the mittens and shoes, blankets and the ICE's parka.

His chair was covered with his Christmas lights and he was content. I tried to take him down the ice slides but he was not allowed to go since he could not go on his own.

Brayden did great...not a fuss throughout the entire day. He made it through lunch, then a ride on a train and sat in Santa's lap (possibly the kindest Santa ever).

Brayden made it through the entire adventure, seemingly enjoying it all. Although he did try to catch a few little naps here and there...with his new friend the Grinch.

The lab results are back

I spoke to the pediatrician today about the lab results from Brayden's stool sample.

The majority of the results are back. It is clear that Brayden is not absorbing food because his pancreas is not working properly. Pancreatic enzymes should be above 200 and below 100 is severe insufficiency. Brayden's came back at 102.

It seems as though Brayden's pancreas works in some ways but not others. His blood sugar is always within the normal range (we check it at home regularly because of the ketogenic diet). But the enzymes used to break down and absorb food are not.

What does this mean?

The simple answer is to give Brayden pancreatic enzymes. I am guessing that this is something we can give like medication or add to his food. The GI doctor is back in the office next week and we will talk to him about the next steps.

Brayden's pancreas will continue to be watched carefully. The stool sample provided a baseline and we can start comparing. We hope that the pancreas is not progressively getting worse and that the enzymes will help Brayden absorb food properly (or at least better) so that he can start gaining weight.

Brayden's next appointment with the ketogenic clinic is in early February...we have until then to figure it out, get him gaining weight...otherwise they will start taking him off the ketogenic diet (which we do not want because it has been amazing for his seizure control).

Christmas Special Ed style

Brayden had a couple of days of school this week. Thankfully his nurse was there to deliver all of his Christmas presents. There are so many people that help Brayden and are a part of his weekly routines.

Here is Brayden's gift list...we give a gift to:
2 morning bus drivers
Teacher
2 aids
1 Occupational Therapist
1 Physical Therapist
1 Vision Therapist
1 Speech Therapist
2 afternoon bus drivers
and of course his nurse (but her present is not ready yet)
we also send in a gift to one of Brayden's doctors and her nurse because they are always there for us.


Each person takes such good care of Brayden and helps him in so many ways...a little Christmas gift is the least we could do.


While at school, Brayden was in his stander, using his switch to turn on Christmas lights and Christmas music and apparently doing great with it all. Once he turned the music on, another little boy in the class would start dancing. I heard it was adorable!


Brayden has also been working hard on his Christmas present for mommy and daddy. It is sitting under the tree waiting for Christmas morning.

The 2nd drop off

I dropped off the bag of Brayden's stool sample.

As I handed it over to the same woman as last time, I said, "Please do not lose this one. I do not want to collect stool again."

She replied, "Oh no, we did not lose it."

I said, "So then you have it!"

She said, "No, we do not."

I said, "So you lost it."

She replied, "We did not lose it, there was some mix up with the pick up."

Hmm, I thought, and exited the office. Now we wait for the results.

Big job for Brayden

Brayden was at school today.

Brayden has been given a big job this week. He delivers the attendance to the main office. Today he was feeling festive with the hat and his switch that says "Merry Christmas" (Luke recorded it for us).

Brayden is wheeled to the front desk with the attendance. Along the way he is to push his switch to tell passers-by "Merry Christmas". Upon arrival in the main office, he must deliver the attendance folder by pushing his switch that says "Here is the attendance Ms. Ruth." Which Brayden actually did on cue today. And then he must hand her the folder, with assistance from his teacher.

How great it is that his nurse snapped this photo with her phone and sent it to me so I could see him in action!

That left leg

Brayden has very skinny little legs. His left leg is my favorite.

He stretches it out; not the right leg, only the left.

He stretches it out to help get his pants off. I just took off his pants.

Put socks on and his legs are back up to their normal position. His "frog" legs, where his legs normally rest.

Then I start to put on his pants. He stretches out his left leg to push his little leg through the pants. He will straighten out his left leg almost every time his dressed and/or undressed (even if he is crying and fussing).

I love this. Each time I feel his leg start to straighten, my heart flutters a bit. It is a clear understanding on his part. He rarely gives us a clue as to what is swirling around his little head. He does not speak any words. His only communication is a fuss, cry and scream, which he does with just about everything. Smiles happen at random a couple of times a week.

But this little skinny left leg...lets me know he is in there.

There is something about Sunday

Sunday is our family day. Jeremy wakes early in the morning, makes a big breakfast. We then head to church for the morning. After church we go for lunch with Jeremy's parents (the boys like to see their grandparents). Come home and relax for the afternoon. Jeremy then takes Carter and Luke back into the church for a children's program.

This is our Sunday routine.
Brayden is not a fan. We are not sure why.

Our church moved into a new building at the end of the summer. Since that time, I have made it into the sanctuary to hear the sermon 2 times (we are there every weekend). The moment we get in the car and start heading to church, Brayden starts fussing. By the time we arrive at church he is screaming. Once Brayden kicks it into "that" gear, there is little that we can do to calm him. He has been doing this EVERY Sunday, since August (except once or twice).

We do not leave church, Carter and Luke are having a good time. Jeremy and I both volunteer in different programs. We just keep assuming that Brayden will adjust.

Church is a relatively quiet place...not a place for a screaming toddler. Many a Sundays you could find Jeremy or I pacing the halls, pushing Brayden around in his wheelchair. Or bouncing him in our lap, praying that he would calm down or just go to sleep. Or you may see us sitting in the car with him while church is going on. Or you might see him in the car, windows rolled down and me sitting on the bench nearby (sitting in the car with a screaming child is torture).

Yes, Brayden has his moments on other days, it just seems to heightened on Sunday.

It has been frustrating. I have felt on the verge of tears or screaming several times. I feel terrible for Brayden, not knowing how to help him...also trying not to disrupt Carter and Luke either.

I must admit that I almost flipped out on an innocent mom a few weeks ago. She politely told me that serving in the Children's ministry once a month was just too much for her, that she rather be in the service with her husband. Missing church once a month was just too hard for them.

In my head I was screaming, REALLY?! You are complaining about once a month and that is serving to help in YOUR child's room!

Outwardly, I tried my best to be kind, after all she did not know my situation and I did not want to take out my frustration on her. I told her we would figure something out that worked for her family...while I think I was grinding my teeth trying to be kind.

Determined not to alter our Sunday as a family, we continue to go to church, praying that Brayden will adjust. Today, my father-in-law graciously sat with Brayden, paced the halls and held him, while Jeremy and I could sit and listen to the service together...it was nice. I have now made it 3x to hear the sermon.

Speaking of mistakes...

I just got off the phone with one of Brayden's doctors. We have been waiting for the lab results from the stool samples (remember we had to collect many containers of it at home). I was hoping to get the lab results this week. The GI and pediatrician's office contacted the lab. The lab has NO record of it. Nothing. The stool that we collected and dropped off is no where to be found. The lab made a mistake and lost it all.

We have to collect poo again.

Early today, Brayden saw his neurologist. No surprise, Brayden has lost weight since the last visit. The doctor is willing to let us explore the pancreas before changing Brayden's ketogenic diet (for seizure control). The surprise was that Brayden's head was measuring smaller. The doctor measured 4x to check, to make sure she did not make a mistake. Then checked the Children's database from his other appointments in the past year. Yes, the measurement was definitely smaller at 41.5 cm. What does that mean? The neurologists said maybe he is loosing brain matter (something degenerative)...it could be a loss of weight that could make his head slim down...his head could of changed shape. His head will be measured regularly to see what happens.

Brayden's already small head is getting smaller?

No Mistakes

I attended a Christmas brunch at the new respite house outside of Washington DC. The new respite house was filled with important women in VA, mostly from Northern VA. The VA Governor's wife, the former governor's wife, local delegates, Ken Star's wife, donors, Brenda Solomon (the co-founder), the list goes on... All of these women came together to make this respite house come to fruition (the first of its kind in the U.S.) and continue to support it.

A house to serve families with special needs children. Several woman spoke. Each spoke about the families that would use the facility, the children that would find activities, support and love just for them.

One woman, who has been a contributor in many ways, spoke about the children that would be walking in and out the doors of the facility; how the world could see them as damaged, broken. Then she said, "God does not make mistakes. These children are not mistakes." I listened with a lump in my throat and eyes heavy with tears, trying to not have them come rolling out.

God does not make mistakes. Having a child that seems so damaged and oh so many things about his body seem broken but he, and children like him, has taught us more about love, patience, grace...than I could ever fully express. Despite the pain that his body feels each and every day with seizures, vomiting and who knows what else, he cuddles, attempts to interact with those around him and gives us such joy.

God knows what He is doing and does not make mistakes.

Nice to see you...it's been a long time

So goes a conversation with neighbors from our last neighborhood. I have not seen them in almost four years. They have not seen Carter and Luke since they were just little toddlers. They did not know we had Brayden or anything about him.

These neighbors are wonderful, always smiling, with a good story and laugh. We encountered each other while out on a farm to cut down Christmas trees.

We exchanged hellos and quick updates on our lives. They asked about the boys, their ages, etc. I did not know how (or if) to share about Brayden. There he was, my 3 1/2 year old boy, laying limp in the jogging stroller. They asked about him. I never know what to share, how much to share...not wanting to overwhelm someone with details but still trying to explain.

I do not share much because I have come to realize that people never quite know what to say to response...the conversation can quickly become awkward.

We assured them that while Brayden was high maintenance, all three of the boys were keeping us busy. We said goodbye, promised to try and keep in touch better then set off to cut down a Christmas tree.

Christmas lights

Brayden is a fan of Christmas time.

Christmas lights are great entertainment.

Using his switch to turn them on and off.

Sometimes with his hand. Sometimes with a head/hand combo to push the switch.

His nurse set him up and he lasted quite a while on his belly (new thing for him), propped up by a pillow, staring at the lights, trying hard to push his switch.

Back to the lab

Today, I dropped off the items for the lab.

We completed the stool sample collection. Seven jars full and one small tube to be exact.

It was not a pretty process...I was equipped with gloves, digging into the diapers and lots of wipes and clean up...I was not mature in handling it...I did make quite a mess (thankfully the nurse was there to help)...I did and still do wonder whose job it is at the lab to handle these (was it really their first choice for a career?).

I drove to the lab with a cooler in the passenger seat filled with stool samples. I walked into the lab and handed it all to the person behind the desk...thinking to myself, I just hand delivered poo.

I prefer not to do that again. The hope is that these stool samples will give the doctors a better idea about Brayden's absorption of his food. To me, it seems as though too much is coming out in the diaper and that might be the reason for the loosing/not gaining weight. Could it be problems with his pancreas? Hopefully these tests will help answer that question.

One last thought, did you know that stool samples (and probably other things) are sent through the mail?

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).