The biggest fan of snow days

Are these two.

Hours of relaxing by the fire, family around and nothing to do. Their favorite thing.

Well, we did watch some movies and make snow ice cream (and Brayden was a little tortured with time in his leg braces and activity chair).  Brayden was not a fan of the touching the actual snow but totally fine with a taste of the snow ice cream.

And now school has been canceled for the rest of the week...we are going to get more creative about things to do around the house...

School time, that leg and back

I love seeing Brayden at school.  School pushes him in ways I would never be able to do at home.  At home, I like to keep him happy, comfortable and snuggle him every opportunity I can (I have a hard time keeping me hands off of him when he sleeps, he is so cute and precious).

At school he is a big boy and at home he is my baby boy.

Since we have had on going problems with his right leg, we have been trying to find the best ways to help him at home and school.  As well as his hips and try to position him without putting pressure on his back.

Brayden has a PT at school so we met to go over way to best help Brayden.

And getting him in the stander which can help his bone strength. 

A camping we will go...

Well, that is what we call Jill's House for Brayden...his camp because it is his little retreat and his version of camp like his brothers' overnight camp in the summer.  And really our best way to explain Jill's House to other people.  A place filled with fun activities, lots of kids, music, crafts, swimming, etc.

I loaded up Brayden on Friday night for his 3rd weekend.  Like last time, I got Brayden ready for bed since the nurses were busy checking in all of the kids and Brayden's bedtime routine is time consuming.  And I don't mind doing it because I get to see Brayden settle in at Jill's House and see how he reacts to being back.

Pulling up to Jill's House and getting Brayden out of the car is interesting to watch.  He gets a very disgruntled face as if he was thinking "What am I doing out, I don't do nights?!" or "I am not liking this".  Then wheeling him in to Jill's House, he starts taking it all in.  His grouchy old man face relaxes and his eyes get bigger...he knows where he is and he likes it.  Then he looks very content and even blessing us with a few grins and happy noises.

We met a couple of new nurses (new to Brayden), they were very detailed about Brayden's care and medical needs, which I very much appreciate.  I finished his nighttime meds and they wheeled him off for his stay.

How was Brayden's stay?!

Another successful weekend.

He even had some time with the therapy dog that visits Jill's House.  Upon pick up they gave us a picture of Brayden with the sweet dog.

Each time they wheel him out for pick up, he looks so much older, mature and bigger.  This pick up time, I had a few helpers (Carter, Luke and a friend). 

These weekends have proved to be such a treat for him (while we were at basketball games and wrestling matches for the boys).  And he "talks" about his stay all the way home...he really has a lot of say about all of his fun.

A little help goes a long way

Do you have trouble finding a sitter for your kids?  Yes (like most parents)?  Now imagine trying to find help for Brayden.

We have had nursing hours for Brayden for a few years now.  We have a nurse for 40 hours a week.  Brayden qualifies for more but it is hard to find a nurse for those off hours (evenings and weekends).  Brayden's current nurse has been flexible and trying to shift her hours to help when we needed the most help.

Jeremy is traveling so much these days.  In the month of January, he is gone more days than he is home.  The business has had amazing growth but that means Jeremy is on the road to those offices.  I am running Carter and Luke (with Brayden tagging along, much to his dismay) to their many activities.  Those late night basketball and wrestling practices do not go over well with Brayden.  Especially since he has been at school all day and is going the next day as well.

There has been some meltdowns during those evening practices (and I have been on the verge with Brayden), sometimes bad enough that I had pulled the boys from their practice early because Brayden couldn't take it anymore...he couldn't take the noise, being tired, too much stimulation for that time of day when all he wants is be in his bed...and I couldn't listen to any more of the random, well meaning, strangers coming up to him (getting too close) saying "Oh, somebody upset and tired!" or "Someone wants to go to bed!" and others that have no problem touching him, which he is not a fan of strangers touching him, but really who is?!

After one too many rough nights, we found some extra help.  Brayden now has an attendant.  The attendant can help with Brayden but not any of his medical stuff, so we adjust so that the nurse or I can do that stuff.  We have the attendant for a couple of evenings during the week as well as Saturday.  And the bonus of having this attendant...she is from Brayden's school.  She knows Brayden; knows his fakes cries, his little quirks and preferences.  She was an assistant in his class last year and the previous year.  She also has worked with other families as an attendant.

We are two weeks in and we are already seeing the benefits.  Brayden is not stressed.  Mommy is not nearly as stressed.  Carter and Luke are not stressed to hear Brayden screaming during their practices/games, worrying that mom would pull them early just to get Brayden home.  Jeremy is not stressed listening to me rant and vent about how I stressed I was getting Brayden in and out of practices, then trying to keep him comfortable and content till we can get him home.

Brayden is home, on those busy nights, resting peacefully is his bed (or having a little dance party).  And his first Saturday at home in a long time (rather than at his brothers' game), he was happy and had fun.  So much fun that he was deep asleep after the attendant left.

Having fun and relaxing can be exhausting.


*Clarification due to a comment.  First off, how nice to have someone be so judging, especially when they do not know, nor do they understand.  We do have a nurse, she can work 40 hours but she really works 30-35 hrs recently and the vast majority of her time is spent with Brayden AT school.  So we have her about 4 days a weeks and they are not full days.  Brayden does go to school M-F and I would like to say that he goes every day...but he does not for a variety of reasons.  The new attendant is here so Brayden can stay home and sleep on the weeknights (only 2 nights).  A lot of the boys practices start around 7:00 p.m. and Brayden's bedtime is 7:00.  And the attendant is with him so far 1 Saturday, and will do more Saturdays, so that we can go to Carter and Luke's games.  I have missed ALOT of games because Brayden does not handle the crowd noises, ref whistles, buzzers, etc.  Brayden and I have stayed home and missed many events because it was best for Brayden to stay home.  Now having an attendant, I have the option of actually going and Brayden can stay home, which is best for him.
Just because we have a nurse or attendant with us does not mean that I am not with him.  Trust me, I am with him.  And with him for a lot of quality time.  More time than I even have with Carter and Luke because of their school time and sports.
Please don't judge, you have no idea.  I love all of my boys dearly and part of being a parent is finding the balance.  I would love to have Brayden with me at every moment (and I have pushed him to far, too many times when trying to include him in everything) but sometimes it is best for him to be at home, with some help.

A Medical Update and More

Brayden has started his wean off the ketogenic diet.  His is in the 2nd step down of 8 steps.  He should be off the ketogenic diet in February.  A couple of Brayden's seizure medications have been increased (his Phenobarb and Lamictal; he is also on Keppra) to hopefully curb the effects of coming of the diet.  His neurologist also gave us a list of what to do/med to introduce if we started to see more problems with seizures.

He does have seizures daily, so we are monitoring and so far we have not seen any significant problems.  Amen...cause I hate seizures, I hate what they do to him.

The ketogenic diet has been our guiding path for Brayden's medical care since he started 3 1/2 years ago.  Every few months we check in with the neurologist and nutritionist (his pediatrician and GI doctor have been involved with them as well).  His labs were checked all of the time, so we knew what was happening with his body.  Before the diet, NOTHING was pro-active, it seemed like we were always waiting to put out another fire.  In a way, the ketogenic diet provided comfort, not just for seizure control, but with his health because he has been so closely monitored.  Coming off the diet, I am trying to adjust Brayden's care and get back into a regular routine with Brayden's other doctors.

For his bone health: He is coming off the ketogenic diet to help, as well as a super duper Vitamin increase.  He will go back to the Children's bone health clinic in March.  We are still having problems with his right leg being extremely tight and uncomfortable...it could be his femur still not healing or just his muscles being too tight yet again and time for Botox so I hope to see his othro dr soon (his regular ortho dr not directly part of the bone health clinic).

Then his GI and pancreas troubles, it will be interesting is see how his body will adjust to not being a such a high fat diet.  His pancreas and GI system was not a huge fan of food to start, then the ketogenic diet needed more adjustment for him to absorb and digest.  For what we have seen so far...well, some interesting diapers.  Brayden will be seeing his GI doctor this week.

We also check in with his nephrologist.

We will be making the rounds.

His Christmas break

Brayden is a huge fan of Christmas break...for the most part.
Christmas Eve at Grandma Ellie and Papa Warren's house.  Brayden is parked by the roaring fire and lights, good for the rest of the night.  He even endures the singing, explosion of the gift exchange and cousins all around (a quiet Christmas Even does not happen but it is so cozy).

Carter took on the responsibility of helping Brayden open his presents, trying to get Brayden participating.

Then Christmas morning.  Carter and Luke were up early (we started hearing the giggles at 5:45 a.m.).  That was not when Brayden was going to get up, nor do we want him up that early...it would not end well.

And the boys went off to get my surprise gifts.  A couple of necklaces...with turtles (Brayden's mascot).  Jeremy, Carter and Luke designed a necklace for me...diamonds and a turtle.  It was so precious to see how excited they were to have these surprise gifts.

Then to Maryland with MeMe and Papa Johnson.  More chaos and noise.  Brayden handled it for a awhile, then needed a break (a little rest in the bedroom).

A busy Christmas break, with brother sports, practices, family time...even Johnson professional family photo when we, for the first time, left Brayden in his wheelchair instead of holding him (will share those when we get them).
All Brayden wanted was to be home with his brothers, sitting by the fire...it could not be any better.

And Brayden spent his New Years in bed and asleep by 7:00 p.m.

Why Brayden loves Christmas

Endless cuddle time.

I'll be back with more pictures...

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 little...how 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.

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).

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 it...in his own way.

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

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)

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.

Macy's www.macys.com/believe or Make-a-Wish http://wish.org/content/macys-believe-campaign

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.