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...

An afternoon of chaos

A Friday.  Just Brayden and I.  The nurse worked different days this week so she was not there on Friday.  Carter and Luke were at school.  Brayden and I were headed out to run a few errands.  First stop to get a haircut (pictures later).  Then the bank and dry cleaners.

Brayden started screaming in the car.  A peculiar cry for him.  I noticed his arms and legs jerking.  I watched it while in the bank drive through, then to the dry cleaner parking lot.  I pulled him out of the car and could feel it...he was having a seizure.  A seizure that is not his typical daily seizure.  This seizure looked much worse than something I have seen in a while.  His arms were banging above his head.  His legs jerking (which does happen sometimes).  And this scream/cry.  In between the jerking and banging, he was screaming.  A scream like he was trapped.  As if he knew he was stuck in a seizure and could not get out...it was an awful noise.

I grabbed the Diastat and gave him the medication in the back of the car.  Waited a few minutes.  Carried him into the dry cleaners, still in a seizure, to drop off the clothes.  Waited a few more minutes.  Still seizing.  I loaded him in the car to drive home, hoping the medication would take affect.

Still screaming and seizing.  I call Jeremy.  Luke has a presentation in about 30 minutes in front of his class and the parents...and I had his props with me in the car.  I realize that I need to call 911 for Brayden, seizure still going.  Jeremy starts driving towards Waterford for Luke's presentation.

A mile from home, I get a call from the school.  Carter is sick with a fever in the nurse's office and I need to pick him up.  I told them I would be there shortly, however Brayden is still seizing and not getting better.  I call the school back and actually asked (not mother-of-the-year moment), "How sick is he?  Is he just tired?  Do I really need to come get him?"  I decide to drive straight to the school; run in, drop of Luke's props, tell him daddy was coming, grab Carter (my car parked in the fire lane, Brayden in the car seizing) and head home.

Finally arrive home, take Brayden to his bed and he is still seizing.  I call 911.  The crew arrives and then the medic...I do not know a single one of them (usually we know at least a couple of them).  I feel like I need to keep explaining things.  Brayden came out of the seizure before he was loaded into the ambulance.  But he was very deep into the postictal state and absolutely unresponsive...even to painful stimulus - no response.

I know the Diastat knocks him out a bit but this seizure really took it out of him.  The seizure lasted at least 2 hours.

We drive to the ER.  The doctor and the two nurses were people that have helped Brayden several times in the past...which makes it all much easier.  After a little discussion, we all decide to just watch Brayden, make sure he comes out of this postictal state and does not go back into the seizure (no IVs or tests, thank you).  Meanwhile, the ER doctor will check in with Brayden's neurologist at Childrens.  The ER doctor talks to the neuro then passes the phone to me.  We all agree that Brayden is fine to go home.  No changes to his medications unless another prolonged seizure happens in the next couple of weeks.

The ironic thing - on Thursday we were downtown at Children's for the ketogenic clinic (will blog about all of that appointment later).  We talked with the nutritionist and neurologist.  I said, "Brayden has not had a prolonged seizure for a long time.  We have not have to call for an ambulance in several months...a record for him."  All considered his medications and diet was doing great and we could wean off one of his medications.

A little time in the ER and Brayden starts waking up.  By the time we arrive home, Brayden was all smiles as if the seizure never happened.

The lame things that I get excited about

• Medical supplies arrive on time and correct - you would not believe how often it is messed up, back ordered, etc.
• I can pick up several prescriptions at one time (why it is that of his 10+ medications, they never seem to be coordinated for refills...at the pharmacy too much)
• Free medical supplies or samples - our version of the swag bag
• Poop in the morning - usually means it is out of the way for the day
• Sunshine - not loading a wheelchair in the rain...it seems to take longer on rainy days
• Scheduled doctor appts - a plan, I like plans
• Food is made - having a nurse is wonderful, not only because I can get out but because she makes Brayden's food.  A mixture of several things for his ketogenic diet that requires measuring and weighing, for some reason I just do not like to make his food, I would rather change a diaper.
• Finishing his food - Brayden is hooked up for more than 20 hours in a day.  When he is not attached to his tube with the feeding pump, it feels so freeing and much easier to hold him and take him around.
• Opening up a hospital or doctor bill to see a zero balance.  I spend too much time on the phone making sure that each thing is processed through BOTH of his insurance co.  Opening up a bill to find a big balance means back to the phone because things were not processed correctly.

Not lame thing I get excited about is kissing him goodnight.  His little face just asking to be kissed.

Team Shirts

Jeremy comes out with this shirt and says,

"I have a bunch of shirts for Carter and Luke's teams, it was about time I had a shirt for Brayden's team."

I ♥ Brayden

My sweet Brayden was nothing but sweet for Valentine's Day.  His nurse and teacher sent pictures of him loving life in the swing.

Oh how it makes my heart happy to see him happy.

Then he came home with his Valentine creations, painted with his chubby little hands (with help from school).

Be My Valentine

Brayden is ready for Valentine's Day...not awake yet but dressed with his Valentine's.  Roses for all of his friends, wrapped around his wheelchair, ready for school.

Perhaps he will wake up later to wish everyone a Happy Valentine's Day!

I am Justice Hear Me Roar

I have not posted much this past week.  Brayden had a good week at school, an actual good week...several consecutive days in a row of being content/happy.  He even had the opportunity to take the therapy dog for a walk at school.

Thank goodness Brayden had a good week because my heart and mind has been aching for our sweet friend Justice.  Justice is only a little bit older than Brayden.  She is one of four children to our wonderful friends.  Friends that we have known long before children.  Justice and Brayden have some of the same diagnoses.  We have been able to walk this life of having special needs children, as well as other children, with them.  And we live just miles from each other!

Over a week ago, Justice was taken to the hospital and in the ICU.  She has been fighting for her life after a volvulus, when the intestines become twisted.  After a few surgeries, infections, etc., she is still fighting. 

All of it makes you appreciate life even more and trust that God has a plan.

The outpouring of love to our sweet little friend has been amazing.  Justice is a little celebrity since she is a star or her very own book, I am Justice Hear Me Roar.  She and her mommy visited many schools and libraries for book readings...making her way into the local newspapers.

We all love this family so much and ask anyone and everyone we come in contact with to pray for her.

Looking good

Brayden's blood work and quick urine tests look fine.  The doctors were really checking his kidneys and they look good.  Not sure why his urine output seems so low but we are increasing the amount of water he gets in a day.

Then we had 3 straight days of Brayden being happy, making it through school and Carter's basketball game.  The next day he did not make it through Luke's wrestling met.  He was there but just not happy and screamed most of the morning.  In the afternoon he went into a bad seizure and we gave him one of the big meds.  Back to school on Monday and he was doing well.

Can I say he is happier now? That we can actually take him out in public?  That he does not scream to spend every moment in his bed?  Three days in a row of happiness is a record around here.

Collector

Ever watch the show American Pickers or Storage Wars?  People looking for some special item, something collectible or even just something to sell to those collectors.  Some people collect antiques, Stars Wars memorabilia, cars, etc. Watching such shows, I came realize that you can find a collector for just about anything (try to watch Hoarders, yikes).



While I am a collector, it is not something for fun.

That is correct.  I am collecting Brayden's urine.  For the next 24 hours, I am armed with urine collection bags.  Tip I learned from a few nurses, to cut a hole in the diaper to help it stay in the bag.

 

Did I mention it should be refriegerated?  That is delightful.

We will take the collection to the doctor tomorrow.  The concern - Brayden's diapers have been too dry.  We know exactly how much liquid he gets in a day, down to the ml.  He is hooked up to his feeding pump 20 hours a day, not mention the water flushes he gets throughout the day.  He should be having more wet diapers.  His nurse even thought I was changing his diapers before she came in the morning (she comes at 6:30 a.m. and I am not waking him to change the diaper). 

At least I am not collecting poop this time...

For Feeding Tubes

You can almost call me an advocate for feeding tubes.  While I do not want any child to have a feeding tube, it truly can make a dramatic difference.   In the past week, I have talked with a couple of families about feeding tubes and it got me thinking...

When Brayden was about 9 months old, we were in midst of a battle for him to eat by mouth.  Brayden was only able to nurse (6-8 times a day for at least 45 minutes, it felt like I was nursing all day and night and I could barely do anything else because there was no time...but I digress).  On good days, we could get a tablespoon of baby food in him.  We went to feeding therapy for many months.  We tried all kinds of feeding methods, all different tastes and textures, all different positions for him to sit, etc.  We even considered going to a feeding boot camp, an intensive program that was a full week of feeding therapy...we did not go because we needed to be here for Carter and Luke.

By about one year, Brayden was not making any progress with eating and his weight was becoming a concern.  I dreaded, I mean dreaded, hated, loathed, the idea of Brayden getting a feeding tube.  It felt like we were crossing over into a deeper, more special needs category, that I was not ready to handle...thinking, "feeding tubes are for those really medically fragile children"...that is not Brayden.

We talked with a few of Brayden's doctors and meet with the surgeon.  Brayden was then scheduled for his first feeding tube surgery when he was about 13 months old.

Brayden had the surgery, everything went pretty smoothly.  He had his first g-tube.  We were sent home with all of the gear and that started our monthly delivery of medical supplies to the house.

Of any tube to be coming out of one's body, a feeding tube must be one of the easiest.  It is not like an IV or central line.  The stomach is a lot tougher than those little veins.  The tube comes out and we have learned to put it back in at home.

As time passed I realized the benefits that do come along with a feeding tube:

• Very important:  These kiddos handle so much just getting through the day.  They need all their strength, which is what food helps provide.
• All of the health problems that come with lack of nutrition can potentially be diminished with the help of a feeding tube.  Malnourished is not pretty...Brayden's bones were pointing out, loosing hair, muscle to help hold him straight, poor sleep, grouchy, possibly bone problems, etc.
• You know the calories/intake.  No more force feeding (or adding those calorie booster ingredients) just to make sure they get some nutrition.
• They can still enjoy food even on the feeding tube.  Nutrition from the feeding tube.  Everything else by mouth is a bonus!  Eating does not have to be a battle.  They can learn to enjoy it.  Eating can be delightful when someone is not stressed out and forcing a spoon in your mouth.
• Hydrated, flushing fluids right into the tube.  We could not get Brayden to take liquids.
• Medications!  This is an ultimate bonus in our house.  Medications slide right down that tube.  Before the tube, we would have to place the syringe in the back corner of Brayden's mouth, slowly push out the medications and close mouth...trying to make sure it all went it.  What to do about those seizure medications that come rolling out his mouth, wondering how much went in, do we give him more, etc?
• Peace of mind, as a parent you know that your child is getting nutrition.  A side note - many parents do a blended diet if you do not want to only do formulas.

Brayden does have a g-tube and a j-tube.  Not because of tube problems, we learned over time that Brayden's GI system is not always working properly.

Feeding tubes get support from me (still would rather not have one but it certainly helps).

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.

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.

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.

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.

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!

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 a.m....at 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.

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.

Sweetness

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.

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.

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.

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 muffs...now 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).

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: http://nbcwashington.com/.

And also an article on FoxNews.

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

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).

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 wrong...here 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 car...in 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).