Merry Christmas from Brayden

His Santa craft from school.

Two things for Brayden

Brayden lost his other top front tooth...he could be singing All I want for Christmas is my two front teeth.  I have tried many, many times to get a picture of the toothless wonder but every time he puckers his lips tight and will not open.  I did not realize he lost a tooth until I saw blood in his g-tube drain...never fun to see blood but this time I knew a tooth was loose.  I looked for the tooth and of course it was gone.  No where to be found so I assume he swallowed yet another one (how long does it stay in the stomach, like the "swallow gum and it stays in your stomach for seven years" myth).

He is fascinated with the big hole in his mouth.  He is constantly trying to get his finger in his mouth to feel it as well as his tongue.

Brayden's second thing is more equipment.  This is his new activity chair.  He uses it at school and does really well.  So we order one for home.  He sits up so nice and it has a great tray to put toys and such on.

I am never a fan of more equipment to have around the house, unless we really need it and will use it.  So far, we are actually using it.

Toy Delivery

Over the past few weeks, the boys and I have been collecting toys for the Inova Fairfax Children's Hospital. Carter and Luke would sort all of the toys.  A pile of all girl pink stuff, a pile for boys and, as they said, "our anybody pile".

We loaded up the car.  Seats folded down and toys stuff in every corner of our large SUV.  Such generous donations this year!  It was great to deliver them to the hospital.

We met with the Child Life crew and they helped us unload all of the toys.  We were not able to go to the floor because of safety and health reasons (good thing since Luke was really not feeling well).

We had carts full of toys!  Thank you to all of those who donated, so many families will benefit!

We also collected Macy's Believe Santa letters.  Each letter put in a Macy's red mailbox is a $1 donation to Make-a-Wish.  This year we sent all the letter we collected to a little girl, who was recently granted her wish.  To give back she wanted to collect 10,000 letters, the word spread about this girl and her recent letter count was some where around 100,000...letters from all over the world!
Carter and Luke did some letters on the Macy's Believe site.

Say it again

Brayden recently had his yearly meeting with his waiver case worker.  We go over paperwork, services, medical items, etc.

As we were going over the past year, his case worker said, "Well, it looks like Brayden was in the hospital two times this year."
I said, "I'm sorry, could you say that again."
He replied, "Brayden was in the hospital twice this year."

Oh how great that sounded to me.  Only two times!

Of course it is for inpatient/checked-in hospital time and that doesn't count ER visits or procedures...all of which have not been nearly as frequent either.

Most of Brayden's life if felt like we were in and out of the hospital for his seizures and vomiting.  Hearing that he was only in the hospital two times this year proves that we are finally getting things under control.  Pray that this continues...

This boy and the dog

Our dog feels the need to check on Brayden every morning.  The dog must walk into his room and she really wants to have a look (she is not really allowed in his room).  Brayden never seems to mind her presence.

Brayden's favorite place, other than daddy's lap, is in the big chair.  This time of year is especially great because he likes the Christmas lights and the warm fire.  Well, the dog likes to hang with Brayden and she loves to lay by the fire.
What happens...

The dog, who is not at all allowed on the furniture, some how knows it would be okay if she was with Brayden.  The dog would not even attempt to get on the furniture if it was Carter or Luke.  So really who is spoiled more...Brayden or the dog.  They are living the good life.  Brayden as happy as can be and the dog too.

Out for the tree in a new ride

Brayden new jogger stroller arrived.  He had outgrown the size you can just buy at a store.  We had to order a new one as we would a wheelchair...through insurance and medical equipment company.

Several months ago, I was emailing back and forth with a mom, she shared some pictures of her family.  In one of the pictures I saw the jogger we wanted for Brayden.  A wheelchair cannot handle all of the activities we drag Brayden to so we needed something more durable.  In that picture, I saw a jogger.  A jogger that looked like any other jogger stroller, but bigger and not all "special needs" looking.  I had an already scheduled meeting with Brayden's PT and medical equipment guy.  This email could not have come at a better time.  The mom emailed me the information on the jogger and that is what I handed over at the meeting.

Months later (after insurance denial, then approval), the jogger arrived.  We put it together, just in time for the trek out to cut down the Christmas tree (and basketball games and a wrestling meet).

Of course his chair is adorned with Christmas lights and bells.
Jogger made by Special Tomato.  It comes with support padding but I have not put it all in yet...I was focusing on getting Christmas lights on the jogger...priorities.

Stopped up

Brayden had one of these weeks...

For the majority of his life his bowel movements have been way to loose and frequent...dangerously so.

But in true Brayden fashion, he always keeps us on our toes.  Since his last ketogenic diet change, he is not going regularly.  He is mostly constipated and we have to help him out.  Still trying to figure out how to handle it between conversations with the keto team, GI doctor and pediatrician.

So far the Miralax and enema combo does the trick...fun times.

I have something in common with Duchess Kate

I was very sick with all of my pregnancies.
With my oldest, I thought it was "normal" morning sickness.  I went to a routine doctor's visit during the pregnancy and ended up with a fast pass straight to the hospital.  Severe vomiting and dehydration that would not I could not get control of on my own.  With each pregnancy it was worse, it lasted longer.  With Brayden it was almost the entire first and second trimester.  I literally slept (and cried a lot) in the bathroom.

I spent quality time with IVs and medications during all of my pregnancies.  It was way beyond morning sickness.  I cannot begin to explain the misery that it was to be pregnant (and some how I have three children!).  My mom would tease me that I never announced my pregnancies in a fun way.  It was always a desperate phone call for help, with me crying.

My dear friend (lives two houses down from me) experienced this with her pregnancy 10 years ago.  She started a foundation, assembled resources and funding for research about Hyperemesis Gravidarum .  A couple of summers ago, she and I were in NYC and spent time talking about it into the wee hours of the night (it may have only been until 10:00 but it felt late).  It is something that really happens, it is really miserable and it is really not taken seriously enough.

With Duchess Kate being declared to have Hyperemesis Gravidarum (NOT, let me repeat it is NOT morning sickness).  My friend was called for interviews and yesterday was a very busy day for her.  Here is a clip from CBS (she was also on Katie Couric), so proud of her.



I have often wondered if this had any impact on Brayden in utereo...

It is better than surgery, right?

Brayden has hip problems and he has muscle tone issues.

Brayden has had Botox for his legs several times, in hopes that he would be more comfortable, his legs would not be so painfully tight and we could avoid major hip problems.

As part of addressing his hip/leg issues, his othro doctor sent us to get a hip brace, which we picked up today.  A brace for him to start sleeping in...

This is holding his legs at a forty-five degree angle, at the hip, to prevent him from letting his legs falling all the way out and going up (we call it his extreme frog legs).

We start with the brace by using it for an hour, then a little more time the next day, and a little more time the following; with the goal of him sleeping with it at night.

I have to keep telling myself (as we torture Brayden with the brace), this is better than surgery...

How to make Wishes come true

Write a letter to Santa. 

Macy's has a mailbox that is just for letters to Santa.

For each letter, Macy's will donate $1 to the Make-a-Wish foundation.  You do not have to donate money, just a little time for a letter.  Have your kids write a letter.  Stamp the letter, drop it off at Macy's and Macy's will take all those letters to the post office for Santa.

Write on your own or use Macy's online tool.

If you do not have time to stop by Macy's or do not have one near you, just send them to us and we will be happy take them to Macy's.  Carter, Luke and Brayden would love to drop them off at Santa's mailbox. 

Make-a-Wish granted our wish, please help others have their wishes come true too.  Just write a letter to Santa.  For more information, you can check out Macy's Believe (has lots of fun Christmas activities on the site) or Make-a-Wish.

If you would like to send your the letters for us to drop off, please email me (efcarrie at aol dot com) for our address.


Give a Gift for a child in the hospital.

The boys and I are also collecting gifts for the INOVA Fairfax Children's Hospital

We know too well, the time and money that is involved in any hospital stay.  Inova Fairfax is where many of the chronically or critically ill children of Northern Virginia are taken for medical care. Many families struggle with this during the holiday season.  Staying at the hospital for any length of time is exhausting on the family and the wallet.  We want to gather as many gifts as we can so that the families staying at the hospital over Christmas time have an opportunity for gifts.  Over the next three weeks the boys and I will be collecting toys to take to the hospital.  Toys for any age, books, coloring books or even just a box of crayons.  Big or small, it is all great for the families!

You can drop them off at our house, meet up or we would be happy to come by to pick them up!  

Brayden and ICE

A little adventure to start off the Christmas season.
The Gaylord National's Shrek the Halls ICE.

Brayden was given a pair of Shrek ears (as a little token of apology for no handicap parking...).

You can tell Brayden was thrilled with the ears.  However they did help keep his hat on for the ICE.  And he and his Papa hung out while the rest of us were enjoying the ice slides.

Brayden did amazingly well.  By lunch time he was tuckered out and fell asleep (like his Great-Grandpa Johnson who can fall asleep any where).  But was back awake and ready to enjoy the Christmas village at the Gaylord National.

Days like this are big steps for Brayden.  He handled an entire day away from home.  Surviving the ICE temperatures of 10-12 degrees, wrapped up in blankets and a giant coat, the chaos and noise all around him...and he seemed to enjoy it all.

Brayden's Thanksgiving

Brayden loves the holidays...sort of.  But he does love to be with his family.

This year, for the first time, he sat at the kids table.  He was a very big boy.

After a long day, he cuddled up with daddy for a few hours (and did not want to be moved per the temper tantrum when I picked him up for bedtime).

Happy Thanksgiving from Brayden

Made at school, with a little help.

Oh how I love to think of his chubby little hands covered in paint to make the turkey and the leaf.

New car seat

Brayden has been using the same car seat for several years.  A regular car seat that we bought years ago at a typical store.  Brayden has grown a lot this year and we are trying to catch up to his big boy size.

First new gear to arrive...the car seat.

We did a trial run in the house.  Fit all the buckles/straps and let him hang out in the house to try it out...he did not seem impressed.

Then we were out for the maiden voyage, just down the road in Waterford.  And he handled it fine.

The delivery of the car seat opened up the conversation in our house (and with my friends) about a wheelchair accessible car.  Why and when is the right time to make that happen.  I have many strong ideas on this but that will be a blog for another day (I will sort out my thoughts and try to not sound to vain and superficial).

Burst my bubble

I find myself watching my boys grow up and thinking that I want them to stay in that sweet innocent bubble.  A bubble that protects their innocence and protects them from the things that can go oh-so wrong in the world.  But I realized that I too had my own bubble.  A bubble that burst when Brayden was born.

My bubble - Bad things don't happen to me.  Sure life is not perfect and I will have hard times but really bad things do not happen to me.  This does not happen to me, let alone happen to my baby.

Yes, I do know that bad things happen and could happen to me.  I just did not think that it would actually happen (I know naive).  It was almost like you could hear the bubble burst as the doctor delivered the first news about Brayden's brain.

Your son is missing part of his brain.  POP.           How could this happen to my baby? POP.

That pop and burst got to the core of me.  My core was shaken.  I did not know heartache like this, fear like this, motherly love and hurt like this...I did not know this could happen to me, to my baby.  This happened to other people, not me.

I can see it now in retrospect.  At the time, I felt like I was dealing with it (and we were) but my bubble was burst.  The burst came hard, fast and leaving a mess.  My view of the world changed.  My picture perfect family changed.  My goals for my family changed.  My priorities changed.  What I thought happiness and joy should be, changed.  My life was forever changed.

It clearly was for the better.  The process has been ugly but our Heavenly Father knows what He is doing.  He gave us the strength in the midst of the mess.  In it I found joy, a deep joy.

So my bubble was burst and I am still wading through it.  As I have said before this is not some period of time or trial to get through, this is what our life is now...burst bubble and all.

Sweetness

Brayden loves his brothers.  He loves to be around his brothers.

He only allows his brothers in his bed (I try all the time and Brayden makes it clear that he does not want me in his bed).  Both Carter and Luke curl in bed with Brayden and read books.

Many times I find Luke pulled a chair right next to Brayden to share a book or pictures.

Brayden nestles right up on them.  He listens, then gets excited, will kick his legs and start his "happy talking".  Luke had to get the hang of reading while Brayden was being loud.  We had to explain that Brayden did not want him to stop, he was happy to have him there and read.  Carter is patient and continues reading.  Both Carter and Luke will try to show him pictures and explain the story.

This might be Brayden's favorite thing to do...ever.

Have my grove back?

I feel normal.  Like, actual normal.  Brayden's life is so manageable right now.  Dare I say we have hit a plateau...a break from the roller coaster ride of emergencies and hospitals.

I have been busy with normal activities for once.  I can actually volunteer at school, go to Carter and Luke's sports (they both had a great football season), see friends...we get to have people over to the house.  I love the noise of boys playing and friends hanging out.  As such simple things but things many of take for granted. I feel so normal.

I feel like myself, rather than a fractured, tired, frazzled version of myself.  I have not felt like this since before being pregnant with Brayden (I do not have great pregnancies and since the moment Brayden was born, his life brought those roller coaster rides).

Brayden is at school Mon-Fri from 10:30-2:30.  He has been doing really well at school.  We have a nurse about 40 hours a week.  Brayden is able to get out and handle being out a lot better.  The majority of Brayden's medical needs are manageable and we do not have to see the doctors nearly as much.  Yes, we still deal with seizures, GI problems and hip issues but we can handle them.  This has been a long stretch without hospital stays or ER visits...ahhh the calm.

Have we found our grove?

And there is time for silliness.  Carter holding Brayden's self portrait that Brayden made (with help) at school.

No hope for the hat

Cold weather does not agree with Brayden for many reasons...
Long shirt and pants are hard to get on, shorts and t-shirts are so much easier.
Jackets, he does not like putting on jackets and we have a hard time bending his arms to get into the coat.
Shoes, he actually has to wear shoes and shoving his incredibly chubby feet into shoes is a challenge.
Football season, his brother still have football games and that means a lot of layers for Brayden, he has enough trouble moving let alone with lots of layers on.
Hats, Brayden does not like to wear a hat.  Sensory issues, wiggling his head issues and when he gets really determined to prove his point about a hat, he will start banging his head to get the hat off.

This weekend was football and a hat.  We finally surrendered to the idea that it was going to be like this, no matter how many times we tried to fix it.  So it became funny and we had to take pictures (with my dad too!).

Brayden's Halloween

Pumpkin lights adorn his chair, flashing pumpkin necklace and pumpkin sweatshirt...all for Brayden instead of a costume.

And his pumpkin he decorated at school, with a little help!

With his peers

Jeremy and I have been helping with our church's AWANA program.  A program for the kids.  In years past, Jeremy would take Carter and Luke in while he volunteered.  This year, Jeremy and I are both helping thus Brayden has gone to AWANA a few times.

Jeremy and I have been helping with the kindergarten age group (oh the crazy things those little kids say...stories I can only say in person and cannot put in writing here).  After Brayden was with me a couple of times, it all of sudden occurred to me that these were his peers.  He was actually in a room of his peers (a room of 50 excited and loud 5 year olds).

Brayden does not go to his Sunday school class.  He hangs with us during Sunday morning church service.  He has not been to AWANA or VBS or even any 'ol regular class with kids his age, since he was about two years old.

I had to process this picture.  Brayden in his wheelchair, developmentally still a baby but five years old sitting in a room filled with other five year old children, who were all talking, walking and having a great time.

I have had to remove myself from comparing him or thinking about what he would be doing for "normal" development.  I had to let that go a long time ago because it did nothing but hurt.  Today, it is almost to hard to imagine what he would be like as a "normal" five year old, not in a hurtful way, but in a way that Brayden is who he is and I cannot imagine him being anything else.

Well as for AWANA, Brayden is not quite a fan and not sure he will be a regular.  The kids are too loud, it is too late for him and he would rather be at home.  However one night, he made it through the entire program...even the rowdy game time.  He almost seemed to enjoy it.

The kindergarten kids have been very sweet to him.  One little girl stands about one foot from him and just stares with her heard tilted to the side.  She may come to get me if he gets upset but otherwise she just stands and stares, in a very sweet way.

Where is the tooth?

This little sweetness loves to ride in the car with other children.  I had a car of boys headed to a birthday party.  Brayden was sitting quietly, occasionally chewing on his finger.

A few minutes away from the party location, I glance in my rear view mirror and I see blood.  A ring of blood around his mouth.  Blood?!

We arrive at the party.  I quickly jump out of the car and tend to Brayden.  Where is the blood coming from?  Did he chew his finger too much and break skin (that has happened before)?  Is he regurgitating blood?  A bit of panic was setting in.

Then I see inside his mouth.  The top tooth was missing and in place was the bloody gum.  Brayden was fascinated with the new hole.  He tried over and over again to get his finger in to feel it.

I found the source of the blood but where was the tooth?  A front tooth is a pretty big one so I was hoping his did not swallow it.  I looked in his clothes, in the car seat, around the car seat, etc.  I succumbed to the idea that he swallowed the tooth.  I started to clean up the blood, oh how he loves to have his face wiped...right up there with needles.

Brayden was wiggling his tongue around and around.  I assumed he was trying to discover this new sensation in his mouth.  Then I saw it.  The tooth was rolling around his mouth.  I had to go in and fish it out.  He loves something in his mouth just as much as he likes to have his face wiped.  Try to put anything in his mouth and he will clamp it shut, he will bite down to keep every thing out.

I grabbed his jaw, held tight and stuck my finger in trying to stop him from swallowing the tooth.  After several tries...I chicken out a few times and jerked my finger out to avoid a bite...I got the tooth.

Oh and there were still boys in my car, not just my children, so hopefully they were not to traumatized by the tooth incident.  Once I had the tooth, I showed the boys and then...

I dropped it down a crack.  Carter said Brayden could still do the tooth fairy.

Brayden was thrilled with the experience.

Fall outings

Brayden has been handling our fall schedule well.  He is not a fan of anything outside of the home or school (and sometimes he is not a fan of school).  So going to all of the football games, church and other outings has been a challenge with him.  He certainly makes it known he does not want to be out.

This past weekend we did not have a football game on Saturday.  We headed to a local farm with giant corn mazes.  Brayden was bundled up and "ready" to go.

So many things that Carter and Luke wanted to do and thankfully Brayden was happy to go along.
Although he was giving me that look...
That says don't mess with me.

It was a great afternoon.
But of course, we had to get one of my "favorite" comments about Brayden...
I was holding him, he was squinting his eyes since he is sensitive to the sunlight.  Random stranger to me about Brayden, "Oh look who is so tired.  This place can wear out the kids!"  I didn't say much other than (saying nicely), "He's not tired, just really sensitive to the sun."  Why do so many assume he is tired?

We tired to get a family photo but they cut out Brayden for some reason.

By the end of the day he was actually tired.