Tuesday, December 25, 2012

Merry Christmas from Brayden

His Santa craft from school.

Saturday, December 22, 2012

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.

Thursday, December 20, 2012

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.

Wednesday, December 19, 2012

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...

Friday, December 14, 2012

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.

Thursday, December 13, 2012

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.

Monday, December 10, 2012

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.

Thursday, December 6, 2012

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...

Tuesday, December 4, 2012

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...

Monday, December 3, 2012

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!