Sunday, January 29, 2012

Paging Dr. Luke

Who knew that naming our middle son Luke was the most appropriate name for him; for Luke is a doctor in the Bible.
Helping with Brayden's book and puppet kit from school.
Well our Doctor Luke is well versed in many fields of medicine.  He knows about EMTs, ERs (knows where to find the snacks), x-rays, MRI, CT scans, EEGs, EKGs, echo cardiograms (he loved to watch that one), ultrasounds, incisions, bandages, casts, IVs, blood tests, feeding tubes, seizures, ICUs, hospital beds, hospital cafeterias, hospital toy rooms, pharmacy, medications, medical equipment (both boys can work the feeding pump)...the list goes on.

Luke started this school year finally being full time, since he is a big 1st grader.  In the years past, he would travel with Brayden and I to many doctor appointments, hospitals, ambulance rides (of which he prefers to ride in the front), tests, etc.  Carter was in school and Luke was my side-kick.  He was always so patient sitting in so many places, many times while chaos was around him, taking it all in.

I would say that nothing has ever frightened him.  Not one bit of the medical world that we have experienced has been scary to him.

Well apparently he deems himself to be a man "in the know", per our conversation the other night.
Oh how I wish you could hear his voice...high pitched and full of life.
Luke:  Do you know J?
Me:  Who?
Luke:  You know, B's older brother J.
Me:  Okay.  How do you know him?
Luke:  From B.  I was talking to his mom, Mrs. R.
Me:  Really.
Luke:  Yeah, see J wants to work at the hospital.  You know were we go.  So I told Mrs. R that we could help J get work there since I know people.  You know, the people at Fairfax Hospital.  Yeah, yeah, we could help him since we go there a lot and we know the people.
Me:  Okay (knowing that I had to talk to Mrs. R to find out what in the world Luke was talking about).

Then Luke wandered off, feeling confident about his world and his connections.

Luke, barely seven years old, has seen more of the medical world than most adults.  It will be interesting to see what path he takes in life...maybe in a medical field.

Thursday, January 26, 2012

Relaxing at home

Brayden has spent the week at home.  He did not go to school.  He stayed at home, his favorite place to be.

The pain seems to be going away.  I do not think his legs have actually been in pain, it seems to be more from the incision site (and after I saw them, I do not blame him).  Moving him around is a bit uncomfortable and changing the dressing/bandages is not pleasant at all; but once he is situated he seems to be just fine.

Getting a little bored yesterday...after playing with toys, watching movies and helping me around the house, Brayden tried out some other earphones.  At the store, I found a pack that had an assortment of different headphones (all in one pack for $5, I do enjoy bargains).  I scooped it up, hoping that one of the sets would work for him.
We tried and this seemed to work best.  Of course the real test is using them out and about...goal is to help block out some of the noise around him that may be a bit overwhelming.

Tuesday, January 24, 2012

Sore Legs

Brayden had a post-op appointment with the orthopedic surgeon.  The botox looks good.  The hamstring/adductor release...the doctor removed the bandages from Brayden's legs and I was surprised to see the incisions, much bigger than I realized, just over an inch on each leg.  No wonder Brayden is uncomfortable.

We are keeping the incisions sites covered/bandaged for a bit longer (since they are just inside the diaper) to keep them as dry as possible.

We can return Brayden to his regular activities of the stander, leg braces, wheelchair, etc; to help keep those muscles loose.  However, Brayden will not be going back to school this week as I thought he would.  At this point he is still sore and very sensitive about his legs.

Brayden did come home with another contraption.  A brace for his hips, oh fun.  Something else to do, put on him, keep clean, irritate him...I mean, something else to help him.  The doctor really wants us to use this for him when he is in bed.
Back to see this doctor in a month.

Friday, January 20, 2012

Dots and Incisions

Arrive at the Inova Hospital 12:00 p.m. for check-in
Go back for pre-op about 1:30 p.m.
Surgery scheduled for 2:00 p.m.
Brayden was happy, wrapped in the warm blankets and even had a couple of power naps.

We waited until 4:15 p.m. before he was finally wheeled back.

Surgery for one hour.
Botox in both legs (the small red dots).  Two incisions, one on each leg, sites for the hamstring/adductor release where the orthopedic surgeon cut parts of the muscle to release pull on his hips (the gauze covering).

One hour in recovery.
Brayden was kept comfortable with codeine and a new teddy bear friend.

Finally made it home after 8:00 p.m.

Up several times through the night for pain medications and gagging (I think having the breathing tube in makes his throat a little sore, which leads to coughing).

So far this morning he is doing pretty well.  Does not want to be touched and those diaper changes are rough since the incisions/gauze are right on the diaper line.

Today is some pain medication and cuddling by the fire.

Then Monday back to orthopedic doctor for follow-up.

Thursday, January 19, 2012

Today is Botox

Brayden is off to the hospital today for Botox and another procedure.

An outpatient procedure at Inova Fairfax, he will be sedated but just for a short time.  The Botox will be in his legs and the orthopedic surgeon will also be cutting a muscle (I believe his abductor) in his upper right leg.

This should help him be more comfortable and relieve the pull on his hips.

I will be back to let you know how it goes!

Wednesday, January 18, 2012

Clean up in 15 degree weather

I know this has happened to many of you.  Poop, explosion of poop, at the worst possible times.

Let me take you back to Sunday morning.  Jeremy and Luke left for Luke's wrestling meet.  Brayden, Carter and I were leaving a bit later for the meet, planning on getting there just in time for Luke's first match (he wrestles 3x in a met).

Brayden had just started an antibiotic for his infected g-tube site.  This antibiotic brought with it explosive diarrhea.  Which I cleaned up at 4:00 least I thought I did until I started to get him dressed later in the morning and realized that me at 4:00 a.m. is not good.  He still had residue on his back and legs.  So into the bath, delaying our departure by about 15 minutes.  Bath is done, Brayden is dressed and I am loading the car.  Last thing in is Brayden.  I pick up him and yes his diaper is full, very full.  I managed to keep the clothes clean but not Brayden's linens, so I had to strip the bed.  But I am actually grateful that he did this at home and not in the car or at the wrestling met...hopefully it was all of out his system.

We finally made it in the car, 30 minutes after when I wanted to leave.  About an hour drive to a high school in Annandale.  This school was an older school, which always has me concerned about accessibility.  But Jeremy called me to let me know that around the gym entrance was a ramp.  We arrived at the school and I drove around and around looking for the ramp.  All I could see was stairs.  Luke's match was moments away.  The ramp was blocked from site by a catering truck.  Once I finally located the ramp, I look for parking.  Only ONE handicap space and of course it was full and every parking lot around the school was full.  I decide that since it was 15 degrees outside, I would double park, unload Brayden and Carter, run them into the gym with Jeremy and return to park my car.

I quickly unload Brayden's wheelchair and rush to grab Brayden.  I pick him up out of the car seat and guess what I found?!  Another dirty diaper, that has leaked/exploded onto his clothes and car seat.  I always have a change of clothes for him so I proceed to change him in the back of my car, parked in the fire lane, in front of the gym in 15 degree weather.  Many of you have tried to peel off the poopy clothes without getting it all over the legs, head, hair, etc.  It is not pretty.  Brayden was screaming, perhaps he was freezing as he was laying completely naked in the tailgate of the car while I tried to wipe away all signs of poop (the smell still lingered).  Now what to do with the dirty clothes?  Roll them into a bag and pray the car does not permanently smell.

Finally I rush Carter and Brayden into the gym (that was packed beyond), we missed Luke's 1st match.  I rush back out to park the car, realizing it still smelled pretty bad.  I was tempted to just toss the clothes into the garbage but the sweater was too nice.

Then back to wrestling, out to lunch, then to a birthday party.  Thankfully he saved his final dirty diaper of the day for that evening, when we were home.

Tuesday, January 17, 2012

Music Muffs and Wrestling

The Music Muffs arrived (headphones in earmuffs).  I downloaded some Mickey Mouse and Praise Baby songs to Carter's ipod...I had to assure him that Brayden was only borrowing it.

I had the Music Muffs ready for Luke's wrestling match.  A gym filled with over 10 wrestling matches going on at the same time, screaming parents (nothing like a screaming wrestling parent, yikes, they scare me), coaches, announcers, etc.  Perfect time to try out the muffs.
Getting the muffs on him was a challenge, he is not trusting of anything touching his head and face.  Once in place and the music was playing, his eyes got big and he listened.  I thought to myself, We have figured this out.  He likes it!  Aren't we just nifty.  I was ready to buy him his own ipod.  That thought only lasted a mere moment when he started to move his head.  The music muffs would NOT stay in place; then would end up around his neck or on his face or wrapped around the top of his head...all getting him aggravated and upset.  No matter what position we tried we could not get the muffs to stay in place.  Between Brayden's tiny, pointy head and the head support on his wheelchair, the muffs were not happening.

He did like the music, so I am looking for other options...earbuds do not work for him, I am thinking earphones like the old school walkman ones.

Sunday, January 15, 2012


Brayden feel asleep on his side with his hand tucked underneath his chubby cheek.
Major points:
  • He got his hand up to his face.
  • He is touching his face and leaving it there without being upset.
  • He crossed over.  Usually for him - left hand is for his left side; right hand is for his right side.  They rarely cross over (part of the ACC).
  • He fell asleep like this.  What?!
  • I have never ever seen him sleep like this.
  • It took a lot of self control for me not to just squeeze this sweetness.

Saturday, January 14, 2012

Bad site

Brayden G-tube area is looking bad. 

This G-tube site he has had for almost four years.  This hole in his body for four years (lots of tubes/buttons in and out of there).  Never in four years have we had a problem with the site, not even a skin irritation.

The past several days his g-tube site, where the white gauze are, seems to be infected.  Not skin irritation, something coming from the inside out.  The gauze is covering were pus and blood are seeping out.  It is really red and painful.  He does not want us to touch it, clean it, turn it, etc...if we do, he cries and kicks his legs in protest.

The GI doctor and nurse took a look yesterday.  We now have a prescription for Keflex, an antibiotic.

Brayden did amazing at the doctor.  He was calm and would only fuss/cry when they touched a sensitive area.  He did a good job letting them know where it was bothering him.  I was so proud of him.

We will check back in with the GI doctor on Monday.

Thursday, January 12, 2012

Black Lab

We have a black lab...she is really more the boys' dog (and by boys I mean Jeremy, Carter and Luke).  The dog follows them around and waits for them to come home for the attention.

The dog does pay attention to Brayden every once in a while; but for the most part she barely goes near him.  She may gently come over to check on him, usually topping it off with a few licks to his face.  Amazingly, he tolerates that...but if mommy touches his face he is not a happy camper.

For Christmas this year, Brayden's Great-Great Aunt (who only looks old enough to just be an aunt) had a blanket made for him with black labs all over it, even with a red collar like our dog.

Brayden has been wrapped in this blanket for his trip on his school bus.  This week a therapy dog came to his class.  This dog visits the classroom on Wednesdays and since Brayden just started going on Wed, this was his first time really interacting with the therapy dog.  According to his teacher, Brayden did just fine with the dog.

When Brayden came home that afternoon, I parked him in the kitchen.  I turned around to gather his things and when I turned back around our dog was laying her head in his lap, sniffing him.  Our dog would not leave him alone.  She was wondering where he had been...

On a side note, I was trying to consolidate some folders on my computer and found a picture of the two of them from a few years ago.  Brayden was just one year old with our puppy we just brought home.

Wednesday, January 11, 2012

Music Muffs

After some ideas from a few people, I have ordered some music muffs to help block out the noise.  No, the muffs are not for me (as a mom there is no way to block out the noise).  The earmuffs are for Brayden.We are willing to try anything at this point.

Is he on sensory overload?  Maybe we can help block out some of the noise.  I have ordered the we need to get him an easy to use and see mp3 player.  Something we could attach to his wheelchair.  Anything ideas?

Brayden loves music.  Currently a huge fan of songs from Mickey Mouse Clubhouse and ocean noises (it might be nice for only him to here those).

Hopefully he will love the music muffs...he may be the only one wearing earmuffs in the summer (oh I just got the There's Something About Mary, brother with the earmuffs...if you have no idea what I am talking about, you are better off).

Tuesday, January 10, 2012

Jill's House

This is a respite facility here in Northern VA (just outside of Washington DC).  It is the first of its kind in the U.S.  It is an amazing place (Brayden is not quite old enough for it yet).  But a special friend of ours is using it a lot and made a little cameo in the news video.

View more videos at:

And also an article on FoxNews.

Those moms of special needs kids know the need for repiste, rest and peace.

Monday, January 9, 2012

Not a Basketball Fan

The screaming has continued.
He did it Friday night (but slept fine that night).  Then Saturday.  It started as soon as we picked him up from his bed.  It continued that morning, then to the car, then to Carter's basketball game.

I tried to watch the basketball game from the hall while I walked Brayden back and forth.  Then I found a vending machine...a very loud vending machine.  I parked him by the vending machine to see if the noise would help calm him down. 
It did...for about two seconds.  Then back to the screaming.  I walked him some more, he looked like he may go to sleep but obviously the noise of a basketball game was not helping.  So I parked him down the hall in a little corridor, a bit away from the noise.  I stood at the door of the gym to watch the game and watch Brayden parked down the hall in a corridor.
Well, that corridor was not far enough away.  So I parked him further down the hall in the janitor's doorway (not pictured because my camera phone could not zoom that far).  I stood at the door to the gym while I watched Brayden (or the back of his wheelchair) down the hall.

Did I mention the random strangers offering their advice on calming him down?  As if I was not grouchy enough already.
Brayden has been to basketball games before and even ones at this gym.  It is not just the lights and sounds at the basketball game that were bothering him...he started before we even left the house.

Oh and Sunday...he was a gem.  Totally fine.  He went to church, to lunch, all fine.  But don't worry it started back up again today with school and at home.

He is only truly content, on days like this, if he is in his bed (that is not ok with me and will blog about it later).

Thursday, January 5, 2012

What really Stresses me out

Is this.  Hours of this.  Of all the things we have to handle for Brayden, this may be at the top of my list for stressful things...this is what makes my jaw clinched and knuckles white.  It is the screaming.
It is amazing how long he can scream.

We had a birthday party to attend.  He was screaming at home but I promised Carter and Luke I would try and take Brayden so they would not have to miss the birthday party.  Brayden was screaming and I still loaded him in the car.  While I was loading him, Carter and Luke was getting in to nice fight with each other that included some pushing and punching.  Everyone was crying and we had not even pulled out of the driveway yet.  I should have just unloaded everyone right then and there.  But no, I pulled out and off we go.  First, stop and get gas.
Brayden is still screaming.
Screaming so loud that Luke asks for someone to pray for Brayden.  Carter gladly started praying.
Brayden is still screaming.
Oh wait, he pauses for a moment...but then we hit a bump in the road...he screams.
He pauses for a moment then I sneeze...he screams.
He pauses for a moment then I turn the car...he screams.
Every little thing is setting him off.

He is screaming and I miss a turn to the party not once but twice.  Is there a DUIS, Driving Under the Influence of Screaming?

We finally arrive in front of the house, Brayden closes his eyes to sleep...apparently exhausted from all the screaming?!  Carter and Luke dash out of the car into the house (like they were running for freedom).  I sit in the car with Brayden contemplating what to do...then he starts up again.  I call Jeremy, tell him to get Carter and Luke because I am heading home with Brayden.

We finally make it home...Brayden screaming all the way.  I put him in bed, still screaming and eventually he stopped.

Here is the problem with the screaming.
1.  I have NO idea how to help him stop.
2.  He does NOT stop.  He gets past the point of no return.
3.  Many times, the more I try to console him the more irritated he gets.
4.  I have NO idea if something is is an idea of the checklist in my mind
  • Is he in pain?  Maybe, he certainly screams like this sometimes...once he actually had a kidney stone and another time he had a broken leg (and we did not know)...but he has screamed many more times without some medical thing wrong.
  • Is he uncomfortable?  I am not sure what is uncomfortable for him (other than obvious things).
  • Are his feeding tubes okay?  Yep, always looking good.
  • He is getting sick?  Rarely had a cough or fever...but he never really registers a fever since he does not control his body temperature well.
  • Is he tired?  Then just GO TO SLEEP ALREADY!  Stop fighting it, if he is really tired.
  • Seizures too much?  Not usually, seizures have been under control for several months.
  • Medications bothering him?  This may only be the case when we are changing around his meds, which thankfully does not happen too often.
  • Too noisy, too much stimulation? We were just in the silence, all of us, in fear that any sudden movement or noise would aggravate him.
  • Too much stimulation/activity throughout his day?  Maybe it catches up to him?
Ugh,  I need to find someone that is a Special Needs Whisperer for Nonverbal Kids (like the horse or dog whisperer).

Tuesday, January 3, 2012

Brayden and Piggie

Brayden is now the proud owner of a little pig...well a little motorized pig that he can activate by his switch.
We set him up for his first meeting with piggie.  He was slow to start but once he got going, he seemed so proud of himself!
We have video!
I realize the video is a bit long (almost four minutes) for just watching him activate the switch but I want you to realize the amazing things that are happening.
  • His hands - his sweet little hands are active, he is moving them (his neurologist was once shocked that he has some intentional movements).
  • His "home base" seems to be his face/mouth.  When he wants to hit the switch, he goes up to his mouth and then down to the switch.
  • He can find the switch.
  • He knows the piggie is there, he does not really look at things straight on but you can see him glaring at the piggie from the corner of his eye.
  • He can tolerate a long period of time (this was over an hour) of trying and letting that pig make the noise and wiggle up against him.
  • He is understanding cause and effect.  Push the switch, the piggie goes.
  • He is having fun!  We do not know many things that he truly enjoys since he rarely lets us know (he is good at letting us know what he does not like but not the other way around).  He is making his happy noises.
Check him out below or at Brayden and Piggie.
That little pig noise can be pretty annoying after about 2 minutes but for Brayden...we will let him go for hours!

How to Break-up

I need advice on how to break-up with doctors.

For example, a few years ago Brayden was seeing a GI doctor at Children's.  We were in and out of the hospital every few months with this doctor due to Brayden's ongoing GI troubles (first g-tube to g-j tube and chronic vomiting and delayed gastric emptying problems).  One night Brayden was taken to our local ER then to be transferred to Children's...however Children's was very, very full, not even room in their ER.  Brayden was transferred to Inova Fairfax (a large hospital in Northern VA).  There we met Brayden's current GI doctor.  This current GI doctor has been a good fit for Brayden and for me.  After a couple of months with this new GI doctor the doctor at Children's called me directly (trust me he is not the kind of doctor who makes his own calls).  He asked what our plans were for Brayden, since he was curious as to why he had not seen him in a few months.  I fumbled together some awkward answer about finding a new doctor.  I was not sure how best to answer him; after all he did invest a lot of hours into Brayden's care (and my mental sanity).

We had a similar situation with an ENT a few months ago.  The first ENT found that having his tonsils and adenoids removed would help with Brayden's sleep apnea.  Due to some difficulties getting Brayden scheduled at the hospital where this ENT worked, we jumped ship and headed to Children's.

Now we are back to another doctor situation. Brayden has been seeing a Physical Medicine doctor and Orthopedic Surgeon at Children's, as part of the CP clinic.  They were the ones who discovered Brayden's hip problems.  And they are the ones recommending the big operation on Brayden's femurs and hips.  However, we are going back to Brayden's original ortho doctor, whom he has seen since he was one year old (this doctor found that the operation is not necessary at this time and Botox can help).  I just got an appointment reminder from the team at Children's.  I will call and cancel the appointment but should I send an explanation?

So here is the question...How do we break ties with a doctor?  We see these doctors a lot, so it is not like we can just fade away...or maybe we can?  The doctors have spent a lot of time with us discussing options, doing procedures/operations.  How can I break-up with them when we have switched doctors?  Do you need to offer an explanation?

It is wonderful to live in an area where we have so many options for great is just hard for us to split Brayden's care between Children's and Inova Fairfax.

Monday, January 2, 2012

New Year 2012

For Brayden this year
  • Botox every 3-4 months for his legs/hips
  • Less Seizures, continue on the ketogenic diet (hopefully wean off one of his meds)
  • Less vomiting
  • Less doctors and hospitals
  • Going to school Mon - Thurs...we added Wed to his school days, starting this week
  • Decide school for Fall 2012, move on to a kindergarten classroom but no idea where (or possibly stay in preschool one more year?)
  • A room on the main floor of our house, just for Brayden; we currently have a large side room (13x30 ft) that we plan to make into a suite for Brayden, complete with large closet and accessible bath
Sounds reasonable, right?  But we never know...Brayden always has us on our toes.
Happy New Year!