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.

Did I mention head size?

After Brayden was born, one of the biggest clues that things were not quite right was the size of his head. His head was little, not even on the chart, little.

The doctor asked, "Your other two children, did they have large or small heads?"

Me, "Their heads are big...really big."

Case in point: the boys needed helmets for their new ATVs. We headed to the store this week. We tried on the Youth Small, then the Youth Medium...not even close. Then the Youth Large and Youth XL, not even budging. They ended up with Adult helmets for their big heads.

Do they look like bobble heads with their skinny little bodies and giant heads (with the helmets)!?

Christmas for Brayden

If you think getting a gift for someone is hard...try finding something for Brayden. All of our great ideas we gave to family who got him some great things, anything with lights or music is good. We got him a soothing noise machine for his room (he loves the sound of the ocean).

With all of the hustle and bustle he did great. Seeming to find a nap whenever he needed it.

While he did great, it is still hard to not have him fully participate in Christmas. One of the best things about Christmas is having kids...all of their excitement...their anticipation of everything Christmas...their joy. Brayden is there, being good but no riping into the presents, squeals of joy, excitement about Christmas or running around with cousins.
I want him to know how exciting Christmas is and be in on the action.

He was in his own way. Some sweet moments:
Brayden's cousin, who is the same age as Brayden (only a couple of weeks apart), offered to push Brayden. She did great and he really like it. I loved it.

And Brayden with his Great-Grandmother, my Grammy, getting some snuggles by the Christmas tree...they just looked so cozy.

The Unexpected Gift

Let me tell you about one of the most memorable Christmas presents I ever received (my parents will remember this one and get a good laugh out of it).

I was in high school. Just like many of us (if you are truthful), I survey the gifts under the tree days before Christmas. As an experienced gift looker, I kind of knew what was clothes or certain things that I asked for that year.

This particular year there was a gift...that I was obsessed with...I picked it up...It was heavy....About the size of the brick. Everyday I would take a look at that gift. What in the world could it be?

Growing up my dad NEVER, EVER, let us open gifts until it was actually Christmas day (or our birthday). For some reason, that year my dad let us pick one gift to open on Christmas Eve...in retrospect I think it was to torture me.

Of course I went for the brick...dying to know what was inside.

I tore in to that gift...

Guess what it was...

It was a desk top set of dictionaries and thesaurus. Just what every teenager wanted. Boy was that a let down, a disappointing Christmas present (not to sound ungrateful mom and dad!). Dictionaries and thesaurus?! Really?!

Till this day, my parents still laugh about the brick.

As I was sitting down to write a "Christmas" blog, the brick came to mind and got me thinking. Brayden was certainly a gift that we obsessed about before he was born. Getting all the baby things ready, trips to Target or Babies R Us, digging out all of the baby gear and setting everything up. I would stand in the baby room surveying what we needed and what needed to be done.

Then came our gift. He was born and we were hit with a ton of bricks...not at all what we expected...in fact we were disappointed and hurt. All babies are a gift, right? What happened?

We have moved far past our disappointment, into being absolutely grateful for the gift of Brayden and everything that comes along with him. He is such a joy. His little life is shaping us, refining us and the same with his brothers. We are becoming completely different people because of him...better people...much more than we expected.

God sent us a gift that was unexpected but He knew exactly what we needed.

Christmas time is all about celebrating and of course the gifts. Most importantly the gift of Jesus. I pray that you find many gifts this season, ones that are not under the tree.

Even the unexpected ones can be amazing.

Luke sings

Luke is middle child but he finds his way to shine.

One of his favorite past times in singing...he loves to sing to Brayden especially in the car.

Check out our family blog for his recent preschool performance.

Quality of Life and Insurance

We have been waiting several months for Brayden's bed.

A hospital like bed, that doesn't look quite so hospital.
This is what we are trying to get.
It was denied in insurance and Medicaid...they say it is not a medical necessity. They said that maybe something like this would work (cheaper for them is my understanding).

It does not work. Part of the reason is that Brayden's arms and legs currently get stuck in the rails of his crib, even with a bumper. When Brayden is at the hospital, they put up big protective things around the bed rails to protect him when he has seizures. Not to mention, his head needs to be elevated, we need him to come up high instead of us bending over (hurting our backs) to tend to him, especially as he gets biggger...I could list many more reasons but I won't.

My big reason for wanting the first bed and not the latter is quality of life. Who wants a hospital bed in their house? Hospitals are not fun, we do not need to bring it into our home. The bed we want has all the features of a hospital bed and looks more like furniture.

The plan is to appeal the insurance and Medicaid. Add a physical therapist and doctor's letter of medical necessity...hoping that we get it.

The morning is not my favorite time of day

I am not a morning person...never have been and may not ever be.

Getting kids ready for school is a challenge. At least they can help get themselves ready.

Getting Brayden ready for school is a challenge.

Brayden needs to have his stomach suctioned for about 30 minutes. Then we do meds...I am measuring things out to the .25 ml and cutting little tablets into 1/4. Some medications go in the G-tube, others into the J-tube. Flush with lots of water.

I make his formula for the day. Fill to 13 oz of water, then 1 scoop of formula, 2, 3, 4...I am tired, what number was I on? Oh, 5, 6, 7, 8 and 1/2. Shake and shake, it doesn't seem to mix well. Set up the feeding pump and ready to use once he is at school.

Wash his face...he does not like it.

Get Brayden dressed...he does not like getting dressed. He cries and screams. His arms and legs are tight because he doesn't want to get dressed. I fish the shelves on one arm and then another. Fish his pants on. Jam his socks on, then his shoes...he curls his toes. Then try to put on his coat and hat. There is no hurrying to get him dressed, it is tedious.

Put him in his wheelchair. One buckle on, the other buckle on. Got backpack, feeding pump, rags, blanket.

Off to the bus at about 6:45 a.m. Ride the wheelchair lift down, wheel him down to the bus...all the while I am barely functioning cause I am not a morning person...trying to focus and get all the things done...still in my pajamas, large sweatshirt and shoes, hair a mess, old glasses...it is a good look.

I come back inside and get myself together. I cannot forget to get Carter and Luke ready for school...and the dog is always in the mix.

At the keto clinic

Our day started off slow...meaning slow moving traffic...we were on the road for 2.5 hours. My dad joined Brayden and I so it helped with the long ride. We were late for the appointment and then the front did not have Brayden on the schedule, so he needed to be cleared before going back. We ended up being about one hour late for the appointment.

We finally made it back. Talked with the dietitian and then one of the neurologist that heads up the ketogenic clinic. We went over Brayden's medical history. They talked about the diet. It requires 3-4 days in the hospital. Once home, weighing and measuring liquids to put into he feeding bag. Checking his blood sugar and urine.

Then we headed upstairs for lots and lots of bloodwork as well as a urine sample (oh that is fun).

The goal is to decrease Brayden's seizures...Brayden's neurologist is hoping that a by product of it could be to help decrease the vomiting if it is coming from some unknown neurological cause.

The ketogenic team did not declare Brayden a candidate for the ketogenic diet. Since he has had pancreatitis from an unknown cause and his chronic vomiting, it could make it worse but they do not know. They will talk with Brayden's neurologist and give us a call sometime next week.

It was a long day.

Keto Diet

We are heading downtown to Children's for the morning. Brayden will be evaluated by several people to see if he is a good candidate for the ketogenic diet.

We have talked with most of Brayden's doctors about this diet...no one is sure if it is good to try or not.

The diet is a huge undertaking. It requires 3-5 day hospital stay to get it started and then constant monitoring after that.

I have lots of questions. I have not met anyone yet with a kiddo that has a G-J tube that has been on the diet so I have no idea how it would work for Brayden.

Pray that we will find some answers today or a clear decision about whether or not to do the diet.

Worn out

I am a person that prefers to be busy. I am much more productive with my time when I have much to do. I had no idea that life could be as busy as these last couple of years have been...and there is no end in sight.

I actually feel pretty good. We get a good night sleep almost every night (thank you Lord for three boys that have always slept well). Still there are days that I feel worn out.

Last week, I was having a good day. Got lots of things done, everyone was where they needed to be and I was right on task. But I had three, totally separate people ask me if I was okay. I mean really ask me with concern. One said I looked like I had been upset. Did I look that worn out? I didn't feel it.

Each time I got in the car and look at myself in the mirror. How bad are the dark circles? Are my worry lines looking more worrisome?

Have you ever noticed that when any POTUS (the official abbreviation for the President of the United States) starts their term they have dark hair but by the end of their term they are almost completely gray. The stress of it all actually ages them?

Is the stress of this life aging me?

For now, I will be stopping by the Clinque counter for some eye cream or learn how to do the smokey eye make up.

Snow or not snow much

We take Brayden everywhere not really expecting him to handle things well. We go into many things ready to bail if Brayden becomes upset...he always does better than we expect.

Well this weekend we thought it would be fun to get our Christmas in the midst of our first snow of the season. It was a cold and very wet snow. All of us bundled up and Brayden was bundled so much I am not sure he could move. Worried that he might get too cold or uncomfortable we wrapped him in many blankets.

The snow came down and down. It was beautiful but how was Brayden going to do? He was in the double jogger...a bumpy ride down the paths to cut the tree. His brothers running all around throwing snowballs every moment they could. And Brayden loved every minute of it all...except his hat...not a fan of the hats. He was relaxed taking it all in.

He really does like being outside, whether by a campfire, on a boat, at a park or fair, farm, for a stroll and now in the snow.

You have to check out the family blog for all the pictures. It was fun!

The young and old

This is Brayden with his Great-Grandmother. She just turned 91.

On Thanksgiving day, she was parked in a chair (since she needs assistance getting around) and Brayden parked next to her in his wheelchair (since he needs assistance getting around). Everyone around was busy talking, laughing and snacking on some before dinner treats. No one in the room where Brayden and Great-Grandma Sommerfeld were sitting.

Neither one of them talking...not much to say.

I looked in the room and saw that Great-Grandma had gently reached over to hold Brayden's hand. They sat there like that for quite some time.

I do not know how much Great-Grandma understands about Brayden but it doesn't really matter. Her sweet gentle touch, reaching over to Brayden...touched my heart and made me tear up.

-

It reminded me of a poem from one of my absolute favorite children's books, A Light in the Attic.

The Little Boy and the Old Man (for this blog we will say woman)

Said the little boy, "Sometimes I drop my spoon."

Said the little old [woman], "I do that too."

The little boy whispered, "I wet my pants."

"I do that too," laughed the little old [woman]

Said the little boy, "I often cry."

The old [woman] nodded, "So do I."

"But worst of all," said the boy, "it seems

Grown-ups don't pay attention to me."

And he felt the warmth of a wrinkled old hand.

"I know what you mean," said the little old [woman].

My Luke is 5

My middle child, Luke turned 5! He is the one who keeps us laughing and on our toes everyday. Check out the family blog about his birthday and more about this special little guy...or should I say big boy.

Joy, Joy, Joy, Joy down in my heart

It is Thanksgiving morning. Everyone is preparing for a day of food, family and friends. Many us will sit around and share what we are thankful for this year.

While I could give a list of all the things I am thankful for, I want to talk about just one thing.

From the kid's song...I've got the joy, joy, joy, joy down in my heart...

This past weekend one of the pastors at our church read Psalm 100.

Shout for joy to the Lord, all the earth.

Worship the Lord with gladness;

come before Him with joyful songs.

Know the the Lord is God.

It is He who made us, and we are His;

we are His people, the sheep of his pasture.

Enter His gates with thanksgiving

and His courts with praise;

give thanks to Him and praise His name.

For the Lord is good and His love endures forever;

His faithfulness continues through all generations.

How can we be joyful and filled with gladness when life is tough? It it really possible to be truly joyful?

Many, many times Jeremy and I have people talk to us about how we handle our roller coaster life with Brayden (and Carter and Luke). People have said, "You handle things so well." Or, "I cannot believe you are not angry about your circumstances." Or, "Your attitude is so great."

To be frank, Jeremy and I do not know any other way to live. But why is that?

Because we found out what we are made of.

What do I mean? Well...I feel like we have faced one of many parents biggest fears, having a child with severe disabilities and medical needs. A child that cannot talk, walk, see or even eat...it can be rough. Instead of crumbling in our circumstances, we have become stronger.

Not by our own strength but the Lord's.

Sure we get upset, frustrated, cry and worry but in our heart of hearts, we know that Brayden's imperfect little brain is part of a perfect plan. We know that everything is in the Lord's hands. Deep inside us we know that Brayden is meant to be who he was meant to be, as are we. For that we are thankful.

Psalm 33:21

In Him our hearts rejoice, for we trust in His holy name.

This Thanksgiving, I have to say that I am thankful for the

Joy, Joy, Joy, Joy, down in my heart

Down in My Heart,

Down in My Heart,

Down in My Heart to stay.

And I'm so happy.

So very happy!

I've got the love of Jesus in my heart.

And I'm so happy so very happy

I've got the love of Jesus in my heart!

A video from the boys favorite group GO Fish, their version of I've got joy.

And the paper turkey was made by Brayden...he painted the feathers as part of therapy then his wonderful teacher and aids put it together.

Make a joyful noise

Brayden has always been a fan of music.

One quiet morning (meaning Carter and Luke were not home and the dog was outside), I put in a Praise Baby movie. Brayden has rarely seen/heard this movie but this day he was having a blast "singing" right along with it like it was his favorite. I had to capture the moment on video.

It is one of the sweetest sounds.

A bit more up to date

Since we received the first suction machine from the medical equipment company, Brayden's GI office has been looking for something better. They have worked hard with the equipment company to find something that could work...not many kiddos have the stomachs pumped at home.

The first machine is huge and has not left his room since the day it was delivered. While I think it is a beauty (sense the sarcasm) with it's classy 70s orange, rusted corners and weight that could be used in a World's Strongest Man competition, I am happy to try something new...a much more sleek model.

The new suction machine was delivered this morning (8:00 a.m. on a Saturday morning). We have not given it a go yet because Brayden has already been suctioned this morning but I am just as excited about the size. We can actually pick up this machine. We do not have to haul Brayden to his room every four hours for a 1/2 hour of suction. It can actually go with us places...kind of, it is not battery operated but needs a plug.

The plan is to use the new for a while, make sure it works for Brayden and then the old one will be taken away.

On a side note, you may notice, Brayden feeding pump pole (behind the big orange machine) is decorate with tinsel. He likes the shine of tinsel. Yes we decorate his pole, right now it is pumpkins for the fall...soon something Christmas...once I actually make it to the store to find something.

Want a Label

We are still waiting for the results of all the blood work looking into metabolic disorders and gene/chromosomal abnormalities.

It would be nice to know something...a label of some sort, a diagnosis.

I get several special needs publications a month. I tend to leaf through them quickly and come back to the articles that I want to read. More often than not there is some article/discussion about labeling people.

Labels are not good. Don't people people in a box. Do not define people by their diagnosis.

I get the point.

While I agree with it to somewhat...I feel like we are on the flip side of that argument. I agree with it when it comes to social interactions but not necessarily when it comes to the medical world. Brayden has no label, no diagnosis.

We have NO road map to help guide us through this. Every new doctor or hospital, we start from scratch. I have a list of at least a dozen things that describe Brayden's medical condition but not just one good label that someone can wrap their head around. No diagnosis, no idea what to do. We have no idea if things are going to get better or worse.

For many months, we have been reacting to bad events. We would like to be proactive rather than waiting around for something bad to happen and then making decisions. If we had some sort of a diagnosis then we could have some guidelines, things to look for, when to push the panic button, ways to help him...not to mention, then the doctors might know what to do.

Having a label/diagnosis is helpful. I know it does not come with step by step instructions and every child is different within that diagnosis, but it gives you something. Something to help your child, prepare for whatever needs may be ahead.

I am not asking for a ribbon to put on my car or a rally to attend, just something to help Brayden in whatever way we can.

No label/diagnosis feels like you are walking in the dark, waiting to bump into something, stub your toe and then realize that was not the right direction. A label could give us a little light (even a minuscule one is better than none) to help us see.

So for now we wait...wait for that label/diagnosis...if it comes at all.

A story of a dentist visit and a neglectful mom

Brayden just had his first ever dentist visit.

I was incredibly anxious about the visit for many reasons. Two of Brayden's molars finally came through and looked very gray. How was the dentist going to get in his mouth? Brayden gags and then vomits with just about anything that upsets him, let alone sticking things in his mouth.

Since Brayden does not take anything by mouth and has not for a long time. His teeth take a very, very long time to finally poke out. Going to the dentist has not really been on his list of things that needed to be done...we have been dealing with bigger things.

We scheduled his appointment with the family dentist, not expecting them to be able to do much but at least have a look. Then we could possibly look into a dentist that does sedation or get in the queue for the dental clinic at Children's (which is a really long wait list, no surprise).

We rolled Brayden in the office, did not take him out the wheelchair. I told the dentist my concerns about the teeth looking gray. The dentist went in for a look...with the little mirror and the pick. I started to sweat a little, sure that Brayden was going to start gagging...his teeth were going to be a mess...just not good.

However, the dentist used the pick and scraped out the big gray clumps. It was not his teeth that were gray but something he had vomited (old stomach bile or medicine) that built up on his teeth. Brayden fussed a little but did not get too upset. Brayden's teeth were just fine.

Then came the questions, a version of it...
Dentist: "How do you brush his teeth?"
Me: "Brush his teeth? Umm we do not do that very often."
Dentist, trying to be understanding.
Me: "Just about anything makes him vomit. He already vomits enough so we do not do much to aggravate it."
Dentist: "You should start trying again."
Me: "I know, I have just been chicken (and feeling like a neglectful mom that doesn't brush her child's teeth...who does that?)".
Dentist: "You are on well water, correct? Have you been giving him fluoride?"
Me: "I have not for awhile. His system has been so volatile that we only do important medicines."
Dentist, trying to be understanding: "You should try giving his fluoride again to make his teeth stronger."
Me: "I will."

So there is my confession/neglectful mom moment for the day. We do not brush Brayden's teeth regularly. It is like a huge therapy goal to tolerate a brushing and not vomit. We will start trying again.

Brayden's teeth actual looked pretty good, no problems, despite all of the vomiting, lack of brushing and lack of fluoride.

I promise we will take better care of his teeth.

Clemjontri Party

This weekend we had the privilege of attending a very special birthday party at Clemjontri Park. It was Waverly's birthday party. The rain held off for such a special occasion!

Waverly and her brother Oliver have terrible disease called Sanfilippo, they have the most aggressive form of it. Each birthday for them is such a milestone.

Many months ago, I was reading our university alumni update and read about this family (both parents were the same year as Jeremy), realizing that they live here in NoVA. Shannon, the mom, and I got in touch and have been checking in with each other ever since...sometimes even getting together for dinner. Through this short time I have come to ADORE her and her children (although this was my first time meeting Waverly). Shannon is such a great mom to Waverly and Oliver.

It was wonderful to be a part of Waverly's special day. To read more about this family please check them out at Exploring Holland and consider giving to their home fundraiser. Please pray for this family, the disease is a mean one and taking away the children little by little.

Not only did we get to be at Waverly's birthday party but we got to see our little buddy Daniel. Daniel is a little guy fighting a big nasty brain tumor. He has been fighting it for several years. Despite all that he has been through. He is the sweetest child ever! His little voice melts my heart. Daniel's mom, Laura, get together with Shannon and I; we check in with each other and often laugh about our crazy experiences with doctors and such. Laura is wonderful with Daniel. They name most of his equipment; like Wayne the walking cane and Bubba the feeding tube!

It was quite a special day. Of course we went on the playground and the carousel. Since the park was pretty empty, Carter and Luke loved to push Brayden through the maze and all around. It gives me such joy to see them involve him in so much. Brayden always seems to enjoy being in on the action.

A Sore

Brayden has a sore, I guess like a bed sore a.k.a. a pressure sore. Since he spends most of his life with his head up against something it is hard to take care of properly. As you can see he has a bald spot from where he lays/rubs his head. It is hard to keep his head up since he has little head control and really cannot tolerate being on his belly.

I thought bedsores where what old people got from laying around nursing homes that do not take care of their residents...I know that is not nice but if someone said bed sore to me that it my first thought, that is until now.

It has been checked out by his doctor. We are trying a few things it help it heal and then hopefully never returned.

Backpack full of goodies

Brayden's backpack today was filled with things.

1. Apparently his tube leaked today all over his clothes. In his back pack a bag of wet stinky clothes...he had to be changed at school.

2. Report of more seizures today. He is having more than we would like...awaiting word from the neurologist on what to do.

3. A gourd. A what? Yes a gourd. The gourd is bumpy...lots of great texture. And he painted it with assistance. What a great idea for therapy. Painting a bumpy gourd (which keeps loading sideways but I guess a gourd looks pretty much the same no matter which way the picture loads).

4. Progress report. Kind of like Brayden's first report card, only it is an IEP progress report. Reviewing his IEP goals. Did he make sufficient progress (SP)? Is it an emerging skill (ES)? Insufficient progress (IP)? Has he mastered (M) that skill?

For the most part Brayden's goals received an ES, he is working on them. As much as we would like him to meet all his goals, the fact that he rides the bus and goes to school is a huge goal reached anyway.

We have Lift off

We have completed our first home modification for Brayden.

The wheelchair lift has been installed. The lift is from the garage into the house. Carter and Luke tested it out and helped Brayden with it as well.

Brayden has tried it several times, still not sure what to make of it.

Neurogenetics Puzzle

Yesterday we spent the day at Children's in the neuro-genetic clinic.

We sat and talked and talked with the doctor and her staff for at least an hour. They asked many, many questions and I did my best to answer them all. Brayden is a mystery.

The doctors are looking into a diagnosis for Brayden, perhaps a syndrome or something.

Brayden has many random puzzle pieces that do not fit together.

• He does not sweat.
• Not great body temperature regulation. He gets a fever if too hot. In the winter his hands and feet get purple from being too cold and then his body tried to overcompensate and turns him bright red, swollen and hot.
• He does not have tears when he cries (he is starting to but not very often).
• Pancreatitis (possibly two cases) that cannot be explained.
• Slow motility, if at all with his stomach.
• Of course the vomiting.
• The vomiting getting worse.
• Seizures.
• Lots of brain abnormalities, parts are missing and others are abnormal.

Did his brain not develop or was there something that has happened to cause damage? At first they thought a trauma happened in utereo that stopped development and damaged things. Now they are leaning towards it did not develop at all/developed abnormal.

We are looking for some answers because we have always been reactive...waiting for him to vomit blood and then we take action. He looses too much weight...then we do something. We go to the hospital, adjust medications, formula...all a result of something bad happening.

If we have an idea what Brayden is dealing with then we can be more proactive...possibly doing the ketogenic diet...rather than waiting for something bad to happen only do a temporary fix.

Lots of blood work was done yesterday, looking into metabolic disorders, gene and chromosomal abnormalities. It will take a couple of weeks to get the results.

Brayden is a puzzle.

A good haircut

For those of you with special needs kids, especially those with sensitivity to touch, know that haircuts are a battle. A real battle.

God has blessed Brayden with a thick head of hair, over compensating for his little head. He needs a haircut more than I care to do. We tried doing them at home...resulting in Brayden screaming/crying and Jeremy and I doing the same...a disaster. Then we started trying an actual barber shop. He would cry. Then the past few times he would squirm and fuss but at least no screaming. His attendant holds him because I cannot handle making him uncomfortable or cause him stress so it stresses me out to hold him for a haircut.

Well yesterday, he did this...











No his eyes are not just closed during the picture. He is asleep, really asleep and he slept for the entire haircut. The easiest haircut he has ever had.


He could have been tired because the night before he was partying it up at Chuck E Cheese. A place that has been sensory overload (for me too) was fun for him. He loved staring at the lights.


He could not have been too tired because some how he slept there right in the middle of Chuck E Cheese with all that noise.


He woke back up and had a grand time with the robotic Chuckie. He loved the music, the swirling lights and he sang right along.

First School Picture

Brayden came home from school yesterday with his pictures.

His first school pictures.

He definitely turned on some smiles for the picture time. He certainly looks like he is having fun.

Let me push

Carter and Luke are fantastic big brothers to Brayden. For 99% of the time they do not complain or even whine about all the things that have to be done for Brayden.

Yesterday was a great day for them.

I was loading Brayden in the bath. I told Carter and Luke they could watch TV until I was done with Brayden's bath. Luke did not watch TV. Instead he came in the bathroom with his sleeves rolled up with a plastic cup to help with Brayden's bath. I asked him if he wanted to watch TV and he said he would after he gave Brayden his bath. As I was dressing Brayden, Luke selected a CD he thought Brayden would like and turned on the music.

After that we loaded the car for an adventure filled morning of driving an hour to the hospital just to pick up Brayden's brain MRI so the neurogenetic clinic could review it further (the MRI was done at another hospital instead of Children's). Not once did they complain about their day off from school being spent in the car for Brayden. We got to the hospital and they took turns pushing Brayden because, according to them, he likes it better when they push him.

We picked up the MRI, they asked to go to the cafeteria because this hospital had a good one. But I surprised them with some Halloween candy in the car for being such great helpers. We loaded the car and drove home, another hour in the car...without complaint.

Trick or Treat or ER

Our Halloween day was a busy one. It was a long 24 hours so you might need to take a break while reading.

Carter and Luke had a big soccer game (Waterford vs. Waterford). They won 3-1 and Carter scored 2 goals. However during the game Brayden was in an intense seizure. I gave his Diastat, med for bad seizures. It did nothing, in fact the seizure was getting progressively worse. Jeremy was coaching, Carter and Luke playing. I watched the game, watched Brayden. After the game, we quickly rushed home and called the neurologist on call.

Here is my conversation.
Me: "Hi, my 2 year old son, history of seizures, is having a bad seizure. We gave him Diastat and it did not do much."
Neuro: "How much Diastat? How long ago?"
Me: "He is on a low dose at 5 mg and we gave it to him about an hour ago. For a total seizure time of about 1.5 hours. Not a seizure that he is coming in and out of, a seizure that has lasted that long. Can we give him another dose of the Diastat?"
Neuro: "You need to hang up the phone with me and call 911. Since he has been in a seizure that long."
Me: "Really? We cannot just give him another Diastat? He has seizures all that time."
Neuro: "With a seizure that last that long, Diastat is not going to pull him out of it. He needs heavy medication. Now hang up with me and call 911."
Me: "Ok, thanks."

We call 911. They arrive, we know them, we know that medic. They take him to the hospital. We know the doctor, the nurses and the techs.

Jeremy rode with Brayden to ER. I stayed home with Carter and Luke got them ready for trick or treating.

At the ER Brayden was given an IV of Ativan and some oxygen. His o2 levels were not so good and he got the little nose of oxygen. This seizures lately have been effecting his o2 and they have not in the past. The Ativan quickly took affect, Brayden slept and when he woke he was much better.

I got the call Brayden was ready to be discharged. I dropped Carter and Luke off with some friends for trick or treating. I go the hospital pick up Jeremy and Brayden bring them home. I then head out to meet up with Carter and Luke.

Brayden coming off of Ativan has not been pleasant lately. He screams and screams. He screamed himself to sleep after coming home from the ER.

Some where in the midst of Jeremy getting him in bed and me giving Brayden's meds...his J-tube was not plugged in properly. We did not realize this until, oh, 4:30 a.m. The feeding pump had been running all night, not into his intestine but all over his bed. And since his J-tube was wide open, all things in the intestine leaked out. Not good (we have been trying to catch up with his fluids since).

We gave Brayden a bath and settled him back in to bed. Jeremy left for a trip.

A few hours after that I loaded the boys in the car and left for church. Brayden decided to vomit 2x on the way there. Enough that I had to stop the car 2x on the side of the road and take care of him...in the rain. We finally arrived...I was volunteering that morning and was late and flustered.

Oh it was a memorable Halloween. Brayden did have an adorable Halloween shirt that glowed in the dark. Only the ER staff got to see it.

Carter and Luke did make it for trick or treating and had fun (Thanks to the Colemans for helping them have a great Halloween). Check it out.