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.