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...

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).