Birthday, Five years

Yesterday I was driving around to pick up little items to make Brayden's birthday special.
Things to decorate his wheelchair and flashy buttons to wear for school.
Then of course a cake, that only Carter and Luke will eat (and Jeremy is out of town).

Last night Carter and Luke wrapped the presents...not pretty and a mess of tape but they wrapped them with love.

Carter and Luke decided to hide the presents around the first floor.  Carter and Luke wheeled Brayden around for a scavenger hunt to gather his presents today.

As I was driving around yesterday, I was thinking...which usually means emotions are bubbling to the surface.  I was thinking about 5 years.  In some way, I never thought to his fifth birthday; never projecting much into the future.  Maybe, on some level I worried that he would not make it to his fifth birthday.  Or maybe, five years old really means being little boy...while his development is still infantile (although his personality is showing to be much more of a five year old, very opinionated with what he likes and what he does not).  Five years means my baby is not a baby, not even a toddler.  

Five years of this.  How many hospital stays in five years?  Seizures (I am too scared to tally up this number)?  ER trips?  Doctor appointments?  Panicked days and nights?  The stress, pain, suffering, etc.

While I can quickly drum up the feelings of sadness over the past five years, the emotion that rises above all that is joy.  I really cannot imagine what the past five years would have been without him.  How much these five years have changed and shaped our lives, really defined who I am, what I truly believe, really if I have the fight or flight attitude (fight, by the way)...all along the way knowing the God has a plan.  Finding a entirely new level of love for my husband and boys; how much I absolutely adore, cherish and love Brayden.

My Grammy called me this morning.  She always likes to take a trip down memory lane...the memory of Brayden's actual day of his birthday.  In those moments of finding out his troubles, I could barely see the next day, let alone his imagine his fifth birthday.  And to be honest I do not let myself go back to those first days, moments of holding my baby not knowing what the future would bring and the doctors giving such grim hope.


I do know that God protects me from seeing the future. Little by little we deal with this and we deal with that...sometimes troubles come in a light rain and other times it feels like a monsoon.  I do not think about Brayden's future in the way I think about Carter and Luke; imagining what sports they will play, what college they will attend, even how their voice will sound when they are older (if you have talked to Luke, then you know why I imagine this).  For Brayden, I can plan out appointments but thinking too far ahead is just not possible.

What would I tell myself five years ago?  Would I want to know?  (I have answer for these questions but that is a separate blog for another day)

Brayden is five years old.  This little boy has changed us for a lifetime in just five years.  The word joy has taken on a whole new and deeper meaning.  We are happy to celebrate his five years!

Birthday TODAY!

Brayden is five years old!  What?!  My baby is five years old!

I will be back with some deep thoughts and of course pictures about his milestone...

Hot weather Hot body

Brayden lives his life mostly in a temperature controlled world.  We know not to have him outside on hot sunny days or "play" in the snow for too long.  His body temperatures changes.  Too cold - his temp goes down.  Too hot - his temp goes up...when it goes up it tends to cause seizures.

Today was a hot day.  Here in Northern Virginia, we have barely stepped into spring weather, with days last week in the 50s and nights in the 30s.   Then today was in the upper 80s, maybe even 90 degrees.  Do you turn on the AC for the hot hours of the afternoon?  Especially since the evening cools off quickly and tomorrow will be in the 70s.

I decided no air conditioning...not a good choice.  Brayden's room gets the afternoon sun and his window is right above the metal roof of the front porch, a cooker. 

And Brayden was cooking.  His little body cannot tolerate the heat.  A temperature for him.  His face looked miserable.

Sometimes I do not realize the effect the surrounding temperature has on him.  It still surprises me that when he gets hot, he actually gets a temperature...it does not help that he does not sweat either, no way to cool himself off.

I cooled him off with cold water flushes into the feeding tube, stripped his clothes and cool wash clothes.

Accessible Home

Creating an accessible home is not something that was ever in my life plan...

But the time has come to make it happen for Brayden and our family.  Brayden has been on the second floor with all of the bedrooms.  He weighs about 36 pounds and he offers no help (in fact resistant) when trying to carry him, let alone up and down the stairs; not to mention how long he is getting.

We looked into an elevator for the house, but we could not find a way to make it work with our floor plan.  Carter and Luke want an elevator for the fun rides and sending the dog up and down.  The elevator was not going to happen.  We also discussed the possibility of building another home...but we are very settled in this house in Waterford.  We have a large great room on the side of the house, a room that we have not used much so it became the best possible option for making the house accessible for Brayden.

The work has started this week.  Big changes and we had to say goodbye to the fireplace in the great room and the beautiful high ceiling, but the new Brayden suite includes a bathroom with a large shower (to easily roll him in), walk-in closet and a ramp (since the room is a step down).  It is looking good and I am excited for Suite a la Brayden.

The plan:

School and IEP

For parents with a child in special ed, you know this time of year is planning for next year with the IEP.

Brayden, by age, should be heading to kindergarten.  I have been mulling over this idea of him going to kindergarten since the beginning of this school year...and it never settled in.  Thankfully he can go another year in preschool.  

Many reasons to keep him in preschool another year, which take too long to explain.  But today was the IEP for next year in preschool.

The only major change:  going 5 days a week next year.

He started this year at 3 days a week, then after Christmas he started 4 days a week.  He has some really great days at school and some really not so great days.

Today he had a good day.  Playing on the computer, hitting the switch to make the computer go.  I came in the room to pick him up for the IEP meeting, another adorable little boy was "saying" hello so I went to him, well it seemed Brayden wanted my attention and he was hitting the switch to show his mommy what he can do on the computer.

Shoes for Fat Feet

Fat, sausage rolls, plump, round, wide...
All words to describe Brayden's feet.

I have a hard time finding shoes for Brayden.  Double wide, triple wide, still not a good fit.  And then to try them with his braces.  I came home this week with more shoes to try on him.  His feet literally oozed out of the Stride Rite double wide sandals, chubby flesh poking out of the sandal holes.  I know we have to head to the specialty store to buy those special shoes.  But I must say I like to have options of shoes, even for Brayden's wardrobe...vain, I know.

I headed to Nordstrom to pick up TOMS shoes for Carter and Luke.  I quickly decided that they would tear through those shoes in a matter of moments.  As cute (and a great idea) as those shoes can be, it was not going to work for them.  But could they work for Brayden?

Oh yes they did (without socks and braces but perfect for spring/summer).  I am now a HUGE fan of TOMS.

Easter Fun

We made it through Easter (we have not been quite as successful in the past).
We made it to the 8:00 a.m. service at church (we are usually 9:30ers).

Waking Brayden up in enough time to have him ready, might not have been the best idea but he made it through the day.

He enjoyed church...perhaps too much...singing, saying Amen, talking, whatever he was doing, he was doing it loud so we ended up in the lobby where he continued to make his happy noises.  Yes, his mouth is wide open because he is just that loud.

After church we had a few extra minutes, so off to take some pictures.  Anyone who has boys, or for that matter children, knows that taking pictures...keeping those clothes clean, free of grass stain, food, etc...can be a challenge.  The harder we try, the cheesier the pictures can be.  Many pictures and we end up with just a few good ones.

And the boys wanted to use the camera so we come up with some interesting shots.

Comfortable on Vacation?

Brayden screaming in the car for hours.  Brayden screaming for the first couple of days on vacation.  It was not unexpected for him to spend time screaming or crying.  We hoped and prayed it would not happen (Luke prayed the nights before vacation that Brayden would be happy).
What makes him uncomfortable?  What makes him comfortable?
I do not know.  Nor do I know why he liked to position his legs like this.

Or his head like this.

Some how this is his way of getting comfortable on vacation.

Brayden and his family

Brayden was just happy to be with his family...at all hours of the day.

He slept in the room with Jeremy and I.  He would wake in the middle of night, knowing that Jeremy and I were there so he would get loud and kick his legs.  If would acknowledged him, he would get louder.  If he was in his own room, he would probably have gone back to sleep a lot sooner.

Brayden and his daddy sat beside the pool, happy to be outside listening to all going on around him (while I was off with Carter and Luke on little adventures).  But Brayden was happy to tag along just to be around everyone.

Finally Vacation

Yes, I am finally posted about us finally going on vacation.

First let me tell you a little story about a sweet British woman, whom we shall call "the Queen".  This sweet woman has become a dear friend to our family.  Many months ago she heard about Brayden, at the time he was in and out of the hospital a lot.  She was very kind to Jeremy.  She offered for us to use her vacation points so that we could go away as a family.  She sent us books and information about the Disney Vacation Clubs, along with very sweet and funny notes.  At the time, we could just not make it work for Brayden.  Months passed and she offered it again.  I visited her home (since she is British, she has many things referring to the Queen) and we settled on a vacation.

We were off to Disney Hilton Head Resort by way of our new friend, the Queen.

About nine hours in the car and  I managed to pack all of Brayden's gear.  So between the back of our Denali, the Thule carrier and a back rack, we were loaded down.  The first leg of the drive was...well, not so nice.  At one point, Jeremy turned and asked if we should head home.  Yes, it was because of Brayden.  Brayden was screaming.  Really, really screaming.  I gave him some medication, hoping it would calm him and help him sleep...but he eventually fell asleep from exhaustion of screaming that long.

That is when I get to be the "cruise director" for all the boys in the car.  Handing out activities, drinks, snacks, movies, video games, etc.

After the screaming stopped the drive went pretty smoothly until we notice Brayden's drain was looking a little milky.  His drain from his stomach which should only look clear/yellow was looking yellowy milky.  It seemed as though his food was backing up into his stomach (not sure if that was even possible).  But we stopped his food.  Then Jeremy asked if I looked up the closet hospital to our vacation spot.  Then we realized Brayden had not urinated for more than 12 hours.  No idea why because once we arrive and put him in bed, everything was following just fine...no need to tour the Hilton Head hospital.

We were thrilled to be in Hilton Head!

We all slept well that night.  The first couple of days were a bit rough for Brayden, he continued his love of screaming.  Jeremy and I spent many hours pushing him around the resort and on the beach...because the moment we stopped, he would start screaming.  He laid in bed with us and even was carried around much more than usual, just to keep him happy (he may have been working his daddy a bit).

After the first couple of days, Brayden settled down and we all were relaxed and happy.
Jeremy helped him relax with long baths...Brayden would fall asleep.

We spent many hours poolside and on the beach.  Brayden loved to be outside and with his family.  He was happy.

 We decided to take his jogger stroller and his wheelchair...comfortable in both.

This trip was the first time, in a long time, that we have traveled without help for Brayden and we managed just fine.

I will back with more photos.

Where have we been?

On vacation.  We actually got out of town, just the five of us, to Hilton Head.

I will be back with details and pictures.

New to the Office - paperwork

Brayden has been seeing most of his doctors for quite some time.  If we do see new doctor, it is usually in the Children's system and we do not have much paperwork/intake to do for Brayden.

I loathe new patient intake and paperwork.  I do not want to regurgitate all of the information, then if they ask for past surgeries and procedures...do they really want to know all of them?

Later this week we will be taking Brayden to a new dentist.  Our family dentist has been helpful at trying little things here and there (not even counting most as a visit but checking Brayden when his brothers have an appointment).  We needed a pediatric dentist, who handles special needs children and does sedation.

I called this week for the intake phone call.  I answered typical questions about contact info, insurance, etc.  Then came the medical history, thankfully not over the phone.  I downloaded the form.  Thankful that I could sit and home and fill it out, rather than in the office (since it takes to long).  So many questions to answer; deciding what info to give and what leave out, after all this is for the dentist.  I finally stopped trying to fill in the questionnaire since I was running out of room and attached our sheet on Brayden's medical history.

There was no way his medication list would even fit on their questionnaire.

I hope this dentist works out...the wait list for Children's dentist is too long.

Get her with a kick

Our black lab does not pay much attention to Brayden.  If we prompt her, she will certainly come lay her head on him or nudge him with her nose.  On this day, the boys and I were in the study working on homework.  We came around the corner to find the dog laying right next to Brayden.

Not only is she laying up next to Brayden's chair, Brayden is tapping/kicking her over and over again.  She continued to lay next to him while he had fun kicking her again and again.

Miles

Our car had a big moment recently.

I cannot believe the mile that we put on this car (especially since it is NOT used for commuting to work).  But many miles back and forth to doctors, hospitals, tests, etc. 

I have been in the habit of driving around so much that our car feels like a mobile home.  Jumping in for a doctor's appointment (or whatever else) we have:  Diapers, wipes, change of clothes, medications, Brayden's food, medical papers/records, extra mic-key button, movie, music, snacks for me, money for parking and tolls, blankets, water, etc.  And this is just when I have Brayden...if I have the other two boys too, the list grows but at least they are old enough now to gather their things.

I think about all the miles we have traveled the years that we have had this car...I cannot believe the roads we have taken (figuratively).  At lots less fun road trips than I would like and a lot more doctors than I would like.

Still, these are the miles that we have traveled.

Legs and Tummy

Brayden had a check-up with his orthopedic surgeon.  Legs/hips are looking good.  His hips are rolling out, which is a good thing since his legs were getting stuck turned in.  The incisions are healing nicely.  He will have another round of botox in his legs, probably in a couple of months.

Then later in the week, Brayden's feeding was accidentally put into his stomach, g-tube (he only gets things by j-tube, intestine).  Last time this happened it was a trip to the hospital.  This time, Brayden vomited the little bit of food that went into his stomach, it seemed he got it all out quickly.  We had to stop his feeding into his j-tube. As the afternoon went on he vomited a few more times but nothing to bad.  About dinner time, I picked him up to sit in my lap.  I wanted to him sit with us during dinner.  As I picked him up, a gushing noise was coming from his drain bag.  We attach a drain/vent to his g-tube most days around the clock, it helps relieve his stomach.  Well, this night his bag was filled with blood. 

A short time of getting food into his stomach and he really cannot handle it.  A tiny bit of food caused this.  And it seems to shut down his GI system.  We knew to put him on gut rest.  But the blood concerned me so I put a call into the GI doctor.  We discussed the options (I said no to some of them) and decided on giving him Pedialyte via j-tube at a very slow rate and then introduce his food over the next couple of days.  Brayden handled it all just fine.

Never a dull moment.

Two year Keto

We are approaching the two year mark of Brayden being on the ketogenic diet.

Within the first few months we quickly saw a significant decrease in his seizures.
Before the diet 10-12 seizures a day and every 6-8 wks in the ER
On the diet 1-2 seizures a day and made it 5 months with a trip to the ER

We did struggle a lot with the right formula mixture with the ketogenic diet, discovered problems with his pancreas...which turned into losing too much weight and compromising his health (doctors were starting to bring up moving him to TPN).

We barely had to get hair cuts (a lot was falling out and became much lighter in color) or trim his nails or even buy new clothes.  

His bones were protruding too much, pressure spots, etc.  He just felt weak and frail.  The dark circles under his eyes were ready for some heavy concealer.  He was also miserable, constantly miserable.
















We collected urine samples, lots of poop collection (do not ever want to repeat those) and lots of blood work.  We tried tweaking the food this way, that way and the same with the pancreatic enzymes.  They even tried to wean him off the ketogenic diet.

Once we found the right formula and added right amount medication for his pancreas, he began to thrive.  His chubbiness is to the max.  He is much healthier, absorbing nutrients and seizures are controlled.

Upon introduction to the ketogenic diet, we were told that most children are on the ketogenic diet for two years and can be weaned off (kind of like being on a heavy medication for too long).  We drove to Children's in DC last week to meet with the ketogenic team.  Brayden has been handling the diet pretty well, there is not a big reason for him come off the diet.  Brayden is already monitored by many doctors so any problems would be addressed.  Brayden also has a lot of blood work done (that is horrible, he is a terrible stick).  He is closely watched on many fronts.  The conclusion is Brayden will continue on the ketogenic diet indefinitely...as long as it works for him.

Did I say that he stayed out of the ER for over 5 months?  That is a record for him (starting from the moment he was born).

We did boost the calories in his diet to make up for the lost weight.  Now he is gaining weight a little too fast...tipping the scales at 36 lbs (when about a year ago, he was around 26 lbs).  He blood sugar has been a bit high - possible sign of too much food and his urine a bit low - adding more water now and taking away some calories.

Now he is one yummy, healthy boy (well healthy for being Brayden).

Dr. Seuss for the day

We spent Dr. Seuss's birthday at the nephrologist (and I had to dress Brayden appropriately).  A check-in since Brayden has been on certain medications (that could have adverse effects on the kidneys) for a long period of time and he has been on the ketogenic diet for all most two years...plus Brayden had a kidney stone a while ago.  Everything looks fine with his kidneys but we will take him for a scan to just to check.

After the nephrologist, we headed to the pharmacy.  Brayden fell asleep during the wait; my sweet snuggle bug.

Today you are you! That is truer than true! There is no one alive who is you-er than you!
-Dr. Seuss

Hair Cut

Getting Brayden's hair cut is not an enjoyable task (our friend of Micki's Barber Shop does a great job).  Although he is handling it better as he gets older...but do not try to hold his face.

Perhaps there was too much time between haircuts...