Wednesday, December 25, 2013

Why Brayden loves Christmas

Endless cuddle time.
I'll be back with more pictures...

Thursday, December 19, 2013

Toy Delivery Day

This year's Toy Drive for Inova Children's Hospital was a HUGE success!  It is humbling to realize how many people helped out this year.  From the Sluggers baseball club (and my boys don't even play baseball) to the Western Loudoun Basketball League and the D1SA Spartans.  From Coach's Corner Restaurant to Hamilton Service Center and Velocity Wings.  And so many generous individuals that donated time and toys!

We collected over 1000 items for the hospital.  Wonderful handmade blankets, movies, video games, lots of books, crayons, tons of games, dolls, stuffed animals, trucks, action figures, jewelry (for those older  teenage pediatric girls), and even the most perfectly wrapped skateboard (seriously whoever that was need to service out their wrapping skills).  Oh and a lot of that hot gift of the year, Cra-Z-loom bracelet maker!

We had so many toys I started to panic a were we going to get them all there?!  My packing skills and slightly OCD need for order was put to test with this load.  I had no idea so many toys would be donated.  Next year will be a Uhaul.

We folded down all the seats and stuffed the car from top to bottom with toys.  All of the blankets and pillows surrounding Carter and Luke in their seats (this year I could not take Brayden, there was no room for him and his wheelchair).  Then we strapped down the rest on the back of the car.
On the way to the hospital, we got some thumbs up and waves for our load (that or they were alerting me that my boys were collapsed under a giant mound of toys in the car).

Arrived at the hospital and there were many rounds of unloading the taking into the hospital.

The Child Life staff at the hospital sorts the toys then gives many to the children in the hospital and those coming and going (Brayden has even received some when there for an outpatient procedure and inpatient).  Some may go to the siblings of the children.  Some may be used in the Child Life playroom.  All will go to great use.

And being on the receiving end for Brayden (thankfully not for a while), I can tell you it is such a joy to know that complete strangers have been thoughtful enough to brighten my families day with a gift.

A note from a mom about her daughter, just last week:  (She) had to have surgery at Inova Fairfax on Wednesday. One of the few times she smiled while there was when Santa came and showered her with presents. Not just one present but three and a book and a homemade pillow.

Thank you, thank you to all of those who generously donated.  I know there are many great things to give to and we feel blessed that so many gave to this toy drive.

Friday, December 13, 2013

So Starts the Wean

Brayden is coming off the ketogenic diet in order to improve his bone health.  He has been on the ketogenic diet for about half his life, 3 yrs and 8 months on the diet.  The ketogenic diet puts the body into ketosis by eliminating all sugars and every derivative of it (in shampoos, toothpaste, sun tan lotion, medications, etc.).  We have carefully watched every little thing he gets.  We have carefully mixed and measured his food (Ross Carb Free Soy Formula, Microlipid, Elecare Junior, MCT Oil, Lite Salt, Vitamin and water, just in one batch).

The ketogenic diet literally has been life changing for him...and I am not being dramatic.  It has really been that good for his seizure control.

Before the diet he had over a dozen major seizures every day (and I didn't even count the little disappearing ones) and we were at the ER every month for seizures we could not control at home.  So many times he had seizures that lasted hours and hours.  Many that were terrifying; for a long time Jeremy and I thought we would loose Brayden to a seizure one day.  Brayden had seizures that we were not sure he was ever going to come out of...some that lasted over 8 hours (to our local ER, then transported to Children's in DC) with more medication that it would take to put a horse down.

Once on the ketogenic diet, Brayden's seizures only happen 1-2x a day, and if there are more we adjust his keto diet and it helps.  Not only have his seizures been under control, Brayden has blossomed.  He is not overwhelmed with constantly having seizures or being completely snowed with medication.  So we have seen his personality so much more.

The ketogenic diet can (and hopefully will for Brayden) almost snap the body out of those bad patterns of seizures so that someone can come off the diet still doing better than before they started the diet.  Typically, someone is on the diet for only 2 years.

Over the next two months, Brayden will be weaned off the ketogenic diet, changing it every two weeks until he is completely off.  And I am sure there will be changes to his medications (he is currently on Keppra, Phenobarb, Lamictal...others too but those are just his seizure meds).

Please pray for a smooth transition.  Pray that this will improve his bone health.  Pray that he starts to absorb all those good things bones need. Pray that his GI system will handle the transition as well, it typically has not liked change in the past.  Pray that we can still control his seizures.  Pray that he is comfortable, we are not sure what has been going on with him the past couple of months but he spends a lot of time being uncomfortable in his own body.

The doctors have been great about communicating thus far.  At Children's 2 neurologists, 1 endocrinologist, 1 orthopedic surgeon, 1 nutritionist (and some other doctors were involved but I forget and didn't pay much attention to them since they did not seem to be the decision makers) and Brayden's ortho dr. out of Fairfax...and of course Brayden's pediatrician who talks me through it, calming my nerves.

We have been communicating with them over email mostly and will continue to do so.  We will see Brayden's neurologist in January.  Then back to the bone health clinic in March.  And labs along the way (hopefully no x-rays till March because we don't want any new problems).

Sunday, December 8, 2013

Jill's House stay #2

We were not sure Brayden was going to make it for this Jill's House stay.  They were concerned about the amount time it takes to handle his morning and bedtime medical routine.  They needed more nursing help (because the nurses have to tend to other children as well).  After several phone call, we decided that I would check him in later on Friday night (which is very busy for the nurses because they have to assist with check in and the bedtime routines) and I would do most of the bedtime things.  For the remainder of the weekend, we shifted his times to accommodate the nurses and Brayden's needs as well.  A few days before and we had it set, Brayden was going to Jill's House for his second visit, Friday night through Sunday night.

Carter and I checked Brayden in on Friday night.  I was amazing to see Brayden immediately comfortable and recognized the place.  He was so peaceful and happy...oh how that makes my heart happy (especially he is usually not a fan is different experiences).  Carter saw it to, he knew Brayden like this place.
It was about an hour to get Brayden situated and we headed out, Brayden ready to enjoy his stay.

Our weekend was filled with Carter and Luke's basketball games, then the Jenkins Restorations Christmas dinner...we did sneak out to stay at a nice hotel nearby for one night while Carter and Luke stayed with their grandparents.

Sunday morning was a bit chaotic since a winter storm was starting, a good bit of snow but then lots of freezing rain and ice.  So Jill's House had an early pick up time.  Jeremy headed in to pick up Brayden.  And this was how he was greeted.  My King Brayden!  He had a wonderful time and happy talked his way all the way home, telling daddy all about his own way.

The report was great.  He was spoiled with all of his favorite activities.

Tuesday, December 3, 2013

Like Butter

Not a way to describe bones...or is it?

Today we headed to Children's National in DC for a bone scan.  Or what I thought was just going to be a bone scan but Brayden's neurologist for the ketogenic diet emailed us (at 1:00 a.m., not sure she ever has down time) to let us know Brayden would also see the endocrinologist.

An appointment time of 7:30 a.m. means we left the house early.

Lots of paperwork when we arrived, then lots of questions (I have mastered the Reader's Digest version of Brayden's medical history) and talked with a few doctors.  Passing one of the doctor's in the hallway, she sat Brayden up and felt his spine...then ordered spine x-rays as well.

X-rays are always a painful task for Brayden, his body never is in the proper position for the x-rays and getting him in that position is....well, a bad experience for all.

After the x-rays, Brayden had a bone scan, targeting his legs, hips and spine.

Scans complete so we headed back to the examining room.  Then we were called back to get more images from the scan (we have learned that when they want more, it is rarely a good thing). 

Thankfully the scans went much better than the x-rays, the table is much softer.

Finally back in the examining room, waiting.  Then five doctors came in (again, rarely a good thing when that many appear...well one was a med student, there because this was an interesting case).

First the orthopedic surgeon spoke, explaining their conclusions for the tests and labs.

Brayden's bone look bad, really bad.  Really, really, bad bone density.  There is a chart with a curve (imagine the growth chart for children), they like for children to be within a range of that curve.  Brayden was not only below the healthy range, he was so low that his bone density does not even register on the chart.  It is bad.

It doesn't stop there.

Brayden has several compression fractures in the lower part of his spine, where the rib cage meets the spine.  And it does not seem to be getting better, the doctor made it seem like it could get worse.

There is still more.

Brayden left hip is not looking good (and to jog your memory, his right hip/leg has been the problem).

The orthopedic surgeon said, "If there was a surgery we could do to help, it would be like operating on butter."  His bones look bad enough for her to compare them to butter.

Time for the endocrinologist to speak.  Basically, we need to get his bones more, more of everything.  This doctor will talk with Brayden's ketogenic diet team to look closely at what his diet includes.  Brayden's seizures medications as also a problem for bone density.

Then the orthopedist dr spoke up again, "I am going to be blunt and harsh.  He needs to come off the diet."  We had more discussion about better positioning, vitamins and how/when their team will talk to the ketogenic team.  And that awful "quality" of life discussion.

We left the 4 hour appointment with many questions and concerns.  How much pain does Brayden deal with everyday?  How fragile is he?  How can we increase his bone density?  What will happen to his seizure control if he comes off the ketogenic diet?  Prior to the diet, Brayden's seizures were terrible, life-threatening terrible and happening constantly.  How bad is this?

I see his little body so differently than I did just hours ago.  His bones are like butter.

The game plan thus far:
  • This team will talk with the ketogenic team to discuss options (not convinced they are giving any other option than coming off the diet and replacing it will more seizure medication)
  • Check in via email over the next couple of weeks
  • Order him more Vitamins and positioning pillows
  • More blood work in a couple of months
  • See this team in three months for another scan (they usually do scan every 6 months but they are worried he is losing more bone density and/or if he comes off the ketogenic diet soon, then there could be a change)

Monday, December 2, 2013

Annual Giving Back at Christmas with the Jenkins

Merry Christmas!I am sure that everyone is busy getting ready for all of their holiday excitement!  Decorating, baking, shopping, etc.  I absolutely love the holidays!
I wanted to let you know about two opportunities to give back during this holiday season for what has become part of our annual traditions.  The boys and I are working on a couple of things and would love to give you the opportunity to give as well! The last couple of years have been a great success and want to do the same this year!
Toys for 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!  
This year we will gathering toys for Inova Fairfax Children's Hospital in honor of two wonderful girls from Waterford:

Jillian D'Errico- 10 year old girl that had a very serious fall just before school started.  She received critical care and attention at Inova Fairfax.  Now she is home, going to school and, as always, being very entertaining. 

Justice Coleman - 8 year old girl, who suffered a life threatening volvulus and infections.  She has spent much time in and out of the hospital over many months, thankfully still covering at home.

Great ideas for gifts:  blankets - even hand made ones (Brayden still uses some from some of his stays), Crazy loom bracelet kits, books, beads/jewelry kits, stuffed animals, video games, movies, etc.
Make-a-Wish letter campaign.  This requires NO money (just time and a postage stamp).
Write a letter to Santa, put it in a stamped envelope and drop it off at Macy's.  Each letter will be a $1 donation to the Make-a-Wish foundation.  As most of you know part of our 2011 year was our Make-a-Wish trip for Brayden.  It was magical beyond words (dare I say better than Christmas!).  If you cannot make it to Macy's, you can give it to us to drop off.
Find out more about this campaign and a fun website for the children.

Thank you for helping us with the opportunity to give during this Christmas season.

If you have any questions, please just let me know.  Email me, efcarrie at aol dot com, for our address or set a time to pick up.