Thursday, December 31, 2009

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)!?

Tuesday, December 29, 2009

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.

Thursday, December 24, 2009

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 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 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.

Friday, December 18, 2009

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.

Wednesday, December 16, 2009

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.

Monday, December 14, 2009

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 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.

Saturday, December 12, 2009

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.

Thursday, December 10, 2009

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 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.

Tuesday, December 8, 2009

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.

Saturday, December 5, 2009

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!

Thursday, December 3, 2009

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].

Monday, November 30, 2009

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.

Thursday, November 26, 2009

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 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.

Tuesday, November 24, 2009

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.

Saturday, November 21, 2009

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.

Thursday, November 19, 2009

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.

Tuesday, November 17, 2009

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.

Monday, November 16, 2009

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.

Saturday, November 14, 2009

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.

Thursday, November 12, 2009

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.

Wednesday, November 11, 2009

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.

Tuesday, November 10, 2009

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.

Saturday, November 7, 2009

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.

Friday, November 6, 2009

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.

Wednesday, November 4, 2009

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.

Monday, November 2, 2009

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 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.

Friday, October 30, 2009

New Kicks

Brayden sporting some new kicks while supervising the big brothers pumpkin carving chaos.

It is fun now that he will tolerate shoes. Although those chubby, double wide feet only fit in to some shoes.

Thursday, October 29, 2009

Not much to say today

Another busy day for Brayden. I got a call from his school, Brayden was not acting quite right...seizure like, not really with it, very flush. I rushed to school and he was not acting quite right. I brought him home for a lazy day, staying around the house.

This afternoon I heard this song.

Many months ago someone sent this to me. I recently emailed to a friend and we talked about it a bit (her son has cancer) and her story with this song.

As a parent of a child with big health/medical issues we spend many hours praying for him, others pray for him...we have learned to pray for many others dealing with similar circumstances in an entirely new light.

This song...well just listen, grab some tissues, you will need it. I have yet to make it through the song without some quality tears.

Wednesday, October 28, 2009

The after effect

After the roller coaster week we had last week, I was spent. Not only stressful but way too busy, running to and fro with already scheduled things each day and throw in the things we needed for Brayden...trip to the ER for not breathing during a seizure, the frantic trip for blood work, the waiting for the results,...

During all of that I kept my head on straight, going through the motions just as I do with most of Brayden's things. Being cool, calm and collected.

I have to say that last week, outwardly (other than to Jeremy) I looked cool, calm and collected. Really I was a mess. Seeing Brayden having such difficulties breathing during that terribly long seizure, shocked me back to reality of realizing the severity of what Brayden deals with on a daily basis. We are so used to it. Lately, we have heard people use the term to describe him as "medically fragile". I did not really agree with that...until the whole not breathing thing.

Then talking with the neurologist, reading the articles that were sent about that metabolic disorder, seeing in black and white..."early childhood death", too much to handle. While we do not really think about the longevity of Brayden's life, the potential of being diagnosed with such a disorder made it undeniable and no way to avoid it.

The doctors can only do so much since they do not really know what they are dealing with, they can not tell us much. Are things going to get better for him or worse? Can a doctor answer that question? I did ask them...all of them...not one of them could answer that...they did say they would work with us to improve his quality of life. And it so ways things have gotten better and in others it has not.

We just do not know.

Only one knows.

The Lord.

Waiting on the Lord.

I try.

If I did that better I would not have ended up in bed this past weekend sick to my stomach with a ferocious migraine from being stressed.

Monday, October 26, 2009

It's not it!

I just spoke with the neurologist...Brayden does not have this disorder. The neurologist and neurogeneticist were surprised his blood work for this disorder came back normal, very normal, especially since his MRI showed a "classic case." If he did have this disorder, the blood work would clearly show it.

The plan is to see the neurogeneticist to review the MRI further and to possibly look at other metabolic or genetic disorders since there seems to be a "pattern".

We are also talking with the GI and neurologist about a ketogenic diet. Scheduling a visit with the ketogenic clinic. This diet is used for many reasons (extreme vomiting, seizures, possible disorder), we may try Brayden on it. One of which could have been because of this metabolic disorder.

The neurologist was pleased that Brayden did not have this disorder since it is degenerative (as are we) however she could not quite answer my question if Brayden's brain is getting worse or staying the same. Her answer was that he has such little white matter and very thin, as well as missing parts, it is hard to tell.

For now, prayers answered that Brayden does not have it. We are still looking for some answers and adding more people to see to Brayden's list.

Sunday, October 25, 2009

Still nothing

I am using a lot of self control and not stalking Brayden's neurologist...I have her email and I know that she has a blackberry (or something like it) by her side. The neurologist told me she would call as soon as she would know something. Tomorrow is Monday and I will start the stalking then.

For now, trying to enjoy the weekend.

I found a much better article about the disorder, it uses words most of us can actually understand. Check it out, Pyruvate dehydrogenase complex deficiency (PDHA).

I am not one to usually be concerned much about what the doctors say, more the manner in which they say it. This is one of those times.

This past week when Brayden's neurologist called at 1:30 p.m., I told her that I just missed her at Children's we were in the area for Brayden's GI doctor. She asked me if I could bring Brayden back down that day for blood work. She knows that we live an hour from the office, it was 1:30 in the afternoon...I was getting concerned. Then she gave me the direct phone number for the lab technician to make sure we could be in first thing the following morning for the blood work. A direct phone number!? For those of you who have dealt with any Children's knows that the phone system is a very tangled web of options, voicemails and hardly ever talking to an actual person and if you do they are no where near the doctor. They never give you a direct phone number. Again, getting concerned.

Then she went on to explain that she showed Brayden's MRI to the neurogeneticist shortly after she reviewed it. The neurogeneticist compared Brayden's MRI to a child with this disorder and they were almost not able to tell a difference. They called Brayden's MRI, a "classic case" of this disorder, as she described in the email she sent me...oh, with other doctors cc'ed.

See all those things little adding up to more concern!?

Despite my rambling on, I am actually much more calm today about it all. But still calling/emailing/messaging the doctor tomorrow morning.

Friday, October 23, 2009

No news yet

Still waiting to hear from the doctor. The neurologist emailed yesterday to let me know the results would be available today or over the weekend.

Seriously, don't those lab people know we are waiting : )...hurry up, stat or whatever.

My cell phone has not left my side. I carry it to take out the trash, lay it by the shower, bathroom, where I am, it is there. Even today when I was out running errands, I did not put it in my purse for fear I could not get to it fast enough if/when it started ringing.

Brayden is not stressed by it at all, in fact yesterday he went for a drive in his attendants convertible. Enjoying that gorgeous weather. It was Brayden's first time with the wind in his hair like that. When he came back he was thrilled, wind blown hair and all.

Wednesday, October 21, 2009

A possible diagnosis?

Brayden's neurologist reviewed the most recent brain MRI and noticed a pattern. A pattern that was of concern. The neurologist showed it to the neurogeneticist.

They called us and asked for us to bring Brayden in immediately for blood work.

Brayden went in for blood work today.

Now we wait for the results.

The doctors think he has metabolic disorder called pyruvate dehydrogenase complex deficiency.

I cannot even begin to explain what it means and how the treatment will, should, could go. It is could be an explanation as to why his vomiting has been getting progressively worse as well as his seizures.

We just don't know yet. It may be a long 24-48 hours waiting for the results.

Monday, October 19, 2009

Drive to the ER

Seconds after I posted the previous blog (check it out, it is a cute video of Brayden and Luke), I received a phone call from Brayden's school. He had a big seizure on the school bus and freaked out the bus driver and bus attendant. Once he got to school he was extremely uncomfortable, then they called me to come in to the school. Luke, who does not have preschool today, and I jumped in the car.

Luke and I arrived at the school to find Brayden still in a seizure. They said he had been like that since he came off the bus. This seizure is kind of new. It is almost like he is trying and trying to break out of a seizure; squirming up and down, legs tight and seemingly agitated as if he is trying to sleep but cannot. I gave Brayden his rectal dose of Diastat (med for prolonged seizures) and loaded him in to the car. He was still seizing but I assumed he would come out of it soon, just as he has in the past. We were barely a mile from the school when Brayden started having breathing troubles.

He has NEVER had breathing problems with any seizure. Never, ever had breathing problems.

He was gasping for air and his color was changing.

I hardly ever freak out about Brayden's medical things. We can manage most of them and even if we cannot and need to go to the hospital, we know the routine and what Brayden needs. It doesn't freak me out.

This FREAKED me out!

My conversation with myself, in my head...
"Ok, he is not breathing. I am freaking out, really freaking out. Can I drive safely to the ER? Should I pull over and call 911. Ok, you are only a couple of miles from the hospital, you can get him there. Freak out later."

We drove straight to the ER and as we pulled up a nurse was walking in. I yelled, "I need help my son is seizing and having problems breathing!" She rushed over and scooped him up. Luke and I followed her right into a room in the ER.

Brayden was starting to settle down shortly after arriving. We figured he had been seizing for about two hours. Thankfully, his breathing was getting better and the seizure was fading away. Thank goodness.

He was tested for some viruses, flu, etc. And they monitored him for a couple of hours. Everything came back fine and he was discharged. The ER pediatrican spoke with Brayden's neurologist and the neurologist made changes to two of his medications. Of course we will be following up with the neuro doctor soon.

Jeremy came and picked up Luke, who is thrilled to be hanging with daddy. I drove Brayden home. Brayden has been all smiles and quite happy since coming off of the medication. I on the other hand feel like I need a good cry.

I just never freak out with his stuff. This really rattled me. Pray that this breathing problem was a one time incident. Seizures with breathing problems is a huge problem, one that we do not want to deal all.

Oh brother

Here in Northern VA the rain has been around for too long. Long cold, rainy days.
What to do when it is raining?

Movie time.

Luke in his bean bag chair, Brayden in his tomato chair, watching the movie. Actually Brayden could care less about a movie, he just likes to be around his brothers.

Luke trying really hard to watch the movie, wanted Brayden to be quiet. I was in the other room listening to them.

Luke, "Brayden, let's watch the movie. Time to be quiet."

Brayden, "Umm, rahh, rahh," (Or however to spell out his sounds)

Luke, "Brayden, quiet. Time for the movie."

Brayden, "Umm, rahh, rahh."

Brayden, loving that Luke is talking to him, would make more and more sounds back to Luke. Luke continued over and over to tell him to be quiet. The more Luke would talk, trying to get Brayden to be quiet, the more noise/talking Brayden would do. I was laughing to myself and tried to quickly grab the video camera.

Friday, October 16, 2009

Home modifications

We are in the process of making our first home modification for Brayden.

A wheelchair lift is going in the garage. We have about four steps from the garage in to the house. Brayden's wheelchair (especially with him in it) is hard to carry in and out of the house. With him catching the bus at 6:50 a.m. we need to get him in and out of the house with ease; and any other time for that matter.

The company came out yesterday to look at what we should have done.

We are going with something like this.

Not incredibly attractive but easy to use. We will make a few changes to make a platform and new stairs in the garage but pretty simple.

And it is EXPENSIVE! I tried not to make a face when the rep told us how much. I was a little taken back with the cost. However, it will make things much easier for us and Brayden.
We also talked about an elevator for the interior of our house but we are not at that point yet.

Wednesday, October 14, 2009

Done having children?

Before our families freak out or I freak Jeremy out...we are not having any more kids. I have no, I mean no, desire to be pregnant again. Pregnancy is not fun for me, I do not enjoy quality time with the toilet or an IV bag.

So what is this post all about then?

How did you know when you where done having children?

I go through purging moods every few months. I clean out the house of things we no longer use, need, want, or grown out of. I have a rule of...If we did not use it this past year, it's gotta go.

This month, I tackled all of those clothes. Tubs and tubs of clothes. Having three boys is great for hand-me-downs. However I still have had all of the clothes Brayden has grown out of. I sat for a few days sorting through all the baby items, feeling extremely nostalgic. I seem to have an emotional attachment to some of these clothes. I kept several outfits: their coming home from the hospital outfit to the outfits from our visits to the White House. The rest I sorted to pass on to a family in need and to Salvation Army.

It all made me sad.

I cannot believe we are done having children.

Very early on, Jeremy and I talked about adoption, usually international adoption. This may be a surprise to some of our family because we only talked about it with a few people.

We thought that adoption might be something we would do to grow our family. At various points in our marriage we talked about it, then about it more seriously, then not for awhile. All the while still a possibility.
This past winter Jeremy and I went to dinner at a little restaurant in Purcellville called Magnolias. Jeremy and I talked about adoption again. He told me that the door on adoption had closed for him, meaning not something he could see us doing. Practically I agreed with him but my heart had not settled on it.

I just really thought that God had special plans for our family and that included adoption, especially since it had always been a part of our discussion on having a family.

As time passes, Brayden's long term needs are becoming more apparent and we are settling in to our lives having three busy boys, I realize that adoption is not something that is going to happen.

The morning I finished up sorting through all of the baby things, I sat on my bed and got a little weepy; sad that we will not be adopting and we are done having children. I said a quick prayer for those who are and the children that need to be. Then I checked my email, a friend announced that they were adopting from Rwanda. I shed some tears in excitement for them and some because it wasn't us. I am thrilled for them but it really made me realize as I was reading her email the day that I was getting rid of our baby items, adoption is not our path.

God had a special child for us. I thought it would be through adoption instead it has been through Brayden (and of course Carter and Luke).

I honestly cannot imagine having four children. I just cannot help but think how do you know when you are done having children?

Tuesday, October 13, 2009

Taking steps to faze out the baby

Brayden is 2 1/2 years old. No longer a baby.

However sometimes it is hard for us and others to see him as a toddler. For me, he will always be the baby of the family, being the youngest. Yes, I baby him because I think he needs extra TLC.

Because his developmental skills are within the newborn to six month range, he is very much like a baby. However, he is NOT a baby. He is a toddler, on his way to being a big boy.

The past several months we have been moving towards making his life less baby. Of course the big move was school and the bus. But we have tried to change things in little ways. He will be getting a twin sized bed soon, he wears shoes, we took off the canopy on his KidKart so that he is exposed more to the world and it looks less like a stroller, and we talk about him like we would a toddler, not a baby.

This past Sunday we tried something else as well. Sunday school class.

For the past two and a half years Brayden has attended church with us. Our church has a room in the back of the sanctuary called the "cry room". A room where parents with little ones can sit and still be in the service but not be in the service (by the way, every church needs this). Thankfully we had this as an option, we could all go to church and Brayden could sit with us. Sometimes, we actually put him in the nursery, if we knew someone in there and they were comfortable with him.

This has been working, however I need out of the cry room. While it is great...I cannot sit in a glass box during church anymore. I do not need to hear myself sing, it bounces back at you from the glass. I do not need to see my reflection in the glass anymore, apparently I have some serious dark circles and fluorescent lighting in this room is not a good look. I have no attention span sitting in the back, I had no idea how many people get up and down during an hour and half service.

And Brayden needs to be out of the nursery, he is not a baby.

Jeremy and Brayden went to the 2 year old class on Sunday. It felt strange to wheel him into this room with busy tw0 year olds and realize they were his peers. Brayden seemed to do pretty well, enjoyed the music time but got a little rowdy during story time. The next few weeks Jeremy or I will stay with Brayden in the two year old Sunday school class to get him acclimated and the teacher comfortable with him being there; then we have some friends/volunteers that will be Brayden's "friend" during church, hanging with him during Sunday school wheeling him to music and story time, just helping him out.

Another step in fazing out the baby.

Saturday, October 10, 2009

To be the little brother

Brayden is the youngest of three boys. His life is busy but so are his brothers. Thankfully we have Carter and Luke is keep us living the "normal" life, not consumed by the medical, therapy, special needs world. Brayden has learned to go along for the ride, as I think many of the youngest siblings have to do.

The adventure this weekend...
A corn maze (Carter and Luke looking over the corn maze from the bridge in the middle of the maze).

Carter and Luke love to do this. Brayden is going along for the ride. A ride in a double jogger stroller. A double jogger that I had from when Carter and Luke were little. I have not moved to a single jogger...well because I cannot find one to fit Brayden properly. I am trying to order him a special wheelchair/jogger stroller, which is a long process. His wheelchair that he uses everyday is not so conducive to the outdoor terrain. (Any stroller/wheelchair ideas are welcome).

So he sits in a double jogger. One seat for him, one for his feeding pump bag.

We all had a good time. And Brayden, well I think he just tolerated yet another outing. For more family pictures, check out the family blog.

I am always amazed at how well he does being toted around to just about everything.

Friday, October 9, 2009

First School Picture

Yes I toke a picture of them taking his picture.

We do not get many (exciting) firsts in Brayden's life. So I considered this to be a first worth documenting. Brayden's first school picture. I wanted a behind the scenes look at what they do for the kiddos in special ed.

Brayden's is in special education preschool at a public elementary school, so they do school pictures. I was a little skeptical...because I remember my school pictures and some can be pretty bad.

The photographer, special teachers, aids and therapists are out there helping the children. For the ones in wheelchairs, they drape their chairs with a big dark cloth. Then everyone tries to get the child to look some where close to the camera and a smile is a bonus! They are all so patient and really give the children an opportunity for a good picture.

Brayden did great. I came with him to school for pictures because it was not a day that he goes to school. I got to see how he is getting comfortable with his surroundings in school and he seems to have really taken a liking to one of the aids.

When it was his turn for the pictures, he actually smiled. They got a couple of him smiling so we will see what comes!

Thursday, October 8, 2009

Carter is 7

My oldest turned 7.

Carter is 7.

Check out the family blog.

Tuesday, October 6, 2009

More from the Fair

Yes, the fair was an adventure (see previous post below). So many tidbits to blog about.

Here is another.

One of our first stops at the fair was a silhouette cutting booth. I am a sucker for getting take-aways from any fair.

I thought it could be fun to have Brayden's done (although a little curious to see what his little microcelphaly head would look like). I asked the people if they would be willing to do Brayden's. They said yes but thought it would be best to come back when he was awake. I responded kindly with an explanation that he cannot sit up on his own so sleeping would be no different than awake, other than his eyes.

The women politely asked me what was wrong with him. I responded the best I could with my typical answer of "brain abnormalities and cerebral palsy". The women seemed to not know what to do with my answer to her question. As she finished up and handed me Brayden's silhouette she tried to offer me kind words of "Maybe he will grow out of it."

She did give him a nice round head (his is actually quite small and a bit flat) for his silhouette.

Friday, October 2, 2009

At the Fair

Luke, Brayden, Brayden's attendant and I headed to the Waterford Fair. Carter was there with school for the day.

The Waterford Fair is full of old time crafts, civil war reenactment and touring historic homes. I knew that fair and location was not suited too much for Brayden. All of the buildings are historic, rough roads and big hills...not the best for a wheelchair but we were going to make the best of it.

But first the parking. Before I go on with this story, let just say I rarely behave like this (thank goodness) and it is clearly not my most mature moment.

OK back to parking.

I live in Waterford, just outside the historic old town. I knew where would be the best place to park for Brayden's wheelchair and the people directing traffic were helpful...that is until we came across an overzealous volunteer. I was following the fair traffic down the main road. I had my window rolled down. When we came up to the volunteer, I asked for handicap parking ahead because that was where I was told to go.

The women came back at me with a "NOOOOOOOOOOO!!!" With a mean face and her face so red from yelling and she was only standing 5ft from my window. I said that I was told to go ahead. She again screamed, "NOOOOOOOOOO!!! YOU HAVE TO GO IN HERE! NOW GO, GO, GO!"

I cannot remember in my adult life when I have had someone yell at me like that. I was so flustered that I drove in to the lot she "told" me to go into.

OK, here comes my not so great moment...

As I was driving in, I was hanging out my window yelling back to this volunteer, "YOU DO NOT HAVE TO YELL AT ME! And I was not finished yet, I came back out my window as I was further in to the parking lot, with a "YOU CAN ASK ME TO DO SOMETHING NICELY!"

Yes, I know, mature.

We went into the lot and found another volunteer who sent us back out of that lot to another one where we could park for handicap accessibility.

After the parking fun, we went down to the fair. It was wonderful. Luke spent most of his time making things like a little broom, stamped leather and made a leaf ornament. He was fascinated with a mime who was doing silly things and playing silly music. Luke wanted to sit and watch every performer that was around. Brayden slept for the majority of it but was awake enough to enjoy some music.