That right leg is wrong

Brayden went to see his ortho doctor.  Brayden's right leg has really been bothering him.  I noticed it, especially in the car seat.  His nurse has noticed it as well as the people at school, so much so that they stopped doing any weight bearing activities for his legs.  

He has been seeing this ortho doctor since he was a baby for almost every three months...she knows Brayden.  The doctor looked at him and with one touch to his leg, she immediately said that his leg felt different and he seemed in pain beyond just being tight.

So Brayden had x-rays.  The x-rays were painful, trying to position his leg for the best pictures. 

It seems Brayden may have/had a slight fracture on the back of his femur; a fracture on the outside, that runs almost parallel with the bone.  It may have happened a few weeks ago since we could see the bright white on the x-ray film showing new growth.  There was also a slight (tiny, tiny) possible fracture in the femur in the front.  There is no need to cast Brayden since it is not a major break and she worries that casting him will not help much anyway.  Brayden will be getting another round of Botox, specifically targeting his right leg on June 11. The good news, the problem was not his hip.  I was really worried he was moving into some hip problems, which can be a huge problem.

That right leg is pulled up so tight, he is protecting it.  He winces with pain when we move him the wrong way.  There is really no way of really knowing how it happened...unfortunately really just part having CP, being completely dependant upon people moving him and this time the doctor called him osteopenic.

That was the first time she has used that word, osteopenic, to describe Brayden...which could open a whole other can of worms.

Had to call the doctor

Brayden GI system and a fickle thing.
Sometimes it works, sometimes it does not.  And there rarely is an explanation for any of it.

Brayden recently has a violent vomiting spell.

That morning I was at the doctor with Luke getting his stitches removed.  When we left the building I noticed a voice mail from Brayden's nurse.  She rarely calls me, it is usually a quick little text here and there.  The fact that she called me caused me to worry.

I called her back.  She described Brayden's vomiting that morning.  Brayden was vomiting blood and a lot of it...coffee ground blood.  Brayden's nurse has seen him vomit a lot but this was the first time she experienced the blood (he used to vomit blood all the time and we would end up in the hospital).

I got Luke to school and headed home.  Brayden was resting and I knew I needed to call his doctor.

I was already preparing my reasoning for not going to the hospital and managing him at home.

Deep breath and I called.  I spoke to the desk worker, she was going to leave the doctor a message but as soon as I said "vomiting blood" I was quickly transferred to Brayden's doctor.  Thankfully, Brayden's doctor has been with him through a lot of hospital stays and vomiting problems.

The doctor, of course, suggest the action of going to the hospital.  I contest a little and tt was decided to turn off Brayden's food for a few hours, then start him on Pedialyte (he cannot have a lot because of the ketogenic diet), all to give him a little gut rest.  If Brayden vomited one more time and it was bloody, we had to head to the ER immediately.

Thankfully, Brayden did not vomit anymore blood.  Hospital was avoided, however stress was not avoided...my how quickly those old days of constant vomiting came rushing back.

A little more help please

Carter and Luke are amazing brothers to Brayden.  They love him and take such good care of him.  They have seen more medical things than most adults.  Many, many times they have helped me clean up Brayden after a good diaper blow out or a major vomit.

Last night I was driving on route 15 during rush hour.  All three boys in the back.  We were going to take Carter to basketball practice.

Brayden started that delightful gagging/coughing noise that he does oh so well.  Carter shouted, "I think Brayden is going to throw up."  I did not think Brayden was really going to (since he coughs like that many times a day) but I asked Carter to put a rag under Brayden's chin just in case.

As Carter placed the rag under Brayden's chin.  Brayden started to spew and it was not stopping.  All over Carter, running down Brayden's arm and leg...then pooling on top of Carter's basketball bag.

Let me remind you, Brayden does not eat by mouth nor does he get anything in to his stomach other than one medication.  So he is really just vomiting stomach secretions and such (it is no where near as terrible as if Carter or Luke started throwing up in the car) but this time it was a lot of vomit.

I am still driving trying to decide if I should pull of the road or drive ahead.  Brayden was not stopping so I needed to stop.  But I look in my rear view mirror and Carter is hanging his head out of the window.  Apparently all of Brayden's vomiting was making him a little ill.  And he was even more grossed out that it was pooling on his basketball bag.  Really, how many times has this happened...hundreds of times and now he is getting grossed out?!

Then Luke is in the back of the car passing up one little wipe to try and help.

I pull off the road.  Brayden is soaked and completely covered in his own vomit. Carter is still hanging his head out of the window and refuses to even look at the pool of vomit on his bag, let alone clean it up.  Brayden has completely filled the rag and Luke is trying to help with his tiny little wipe.  Luke finally passes up the entire package of wipes and we start cleaning up the mess.

Carter is now a little late for basketball.  We pull up and a wonderful friend (K) offers to drive Carter home, even though it is out of her way, so we don't have to stay.  And it was a good thing because Brayden was going to go to basketball practice naked only covered by a blanket.

One of those things not to yell across any room...

would be a woman's weight.

Right?!

Weighing Brayden is a task all in its self.  When he was little (and he was scrawny and little for a long time) we could some how manage to squeeze him on a baby scale.  Once he no longer fit, that is when audience participation is required.

We (meaning Brayden's nurse or I) get on the scale to be weighed.  Then we stand on the same scale holding Brayden.  Then subtract the difference and there you have Brayden's weight.

At a recent appointment, we did the weight dance...on and off the scale.  Brayden's nurse walked on to the scale.  The office nurse shouted out her weight across the office for the other office nurse to record.  Her weight not holding Brayden. I started laughing and tried to make a joke about never yelling a women's weight...that could be a public embarrassment.  A little lesson in office etiquette was needed.

You make me wanna roll my windows down

Remember being in high school, how cool you felt to have the windows down and music blasting on those warm spring and summer days.

Well, Brayden and I had a trip to WV yesterday.  We were meeting up with the boys for Carter's basketball tournament.  The moment I loaded Brayden into the car, he starting screaming.  And he screamed for the next hour, pretty much the entire trip.  It sounded more like a temper tantrum than anything else.  He just seemed mad to be in the car.

There are few things more exhausting and frustrating than your child screaming in the car.  It makes me crazy, there is little you can do to improve the situation.  Brayden continued to scream...and I continued to get more and more frustrated.  

Finally I could not take it anymore.  All of the windows were rolled down (and I blasted the heat since it was not very warm in the morning).  I tried to drown out the noise for the next 20 minutes, to no avail.  Then came the radio, I am not sure even what we were listening to, but some how crossing the mountain in to WV, most of the stations turned into country music (heard an interesting mix of country and rap, thus the title of this post...I had to google right now to make sure I heard it correctly).  I did not care what we were listening to, just something to drown out his screaming and my thoughts of going crazy.  He made me wanna roll my windows down and have the radio up.

We finally arrived but I was so frazzled I missed the turn not once but twice.  Then I parked, got out of the car, paced the parking lot for a few minutes and finally unloaded Brayden...

who immediately stopped screaming when I put him in his jogger chair.

Tell me he doesn't know what is going on.

A little workout

I had to work some things out on Friday.

We had the driveway and part of the road in front our house fixed.  The crew did not start the major work until after I got Brayden on his bus.  Brayden's bus comes to the end of our driveway (very convenient).

However, Brayden could not come home on the bus.  The bus lift opens up right on top of our driveway...not going to work when they are working on it.  And the trucks and equipment were filling the road too much for the bus to get through properly (and Brayden's afternoon bus driver seems a little grouchy and it would have probably upset her).  So I picked Brayden up from school.  It is always fun to see him at school in his environment, outside of home.

Brayden and I arrived home, parked on the street.  I ran into the house to grab his jogger wheelchair,  I wheeled his jogger down the front yard to my car and loaded him in.  We walked down the street to get Carter and Luke from their bus stop.

Oh the walk back up the hill...going down it always seems like a nice walk but the walk back up...our road is a bit steep and it is a work out to push Brayden back up (his 40+ pounds plus the weight of his chair).  Carter and Luke were not much help since they had field day all day at school...lets just say they were need of good food and rest.

We finally made it up the street (sweaty and fussing, but we all made it).  Then we had to figure out how to get Brayden up to the house since we could not use the driveway.  Carter, Luke and I, all pushed Brayden, in his chair, up the front hill (and the picture does not do that hill justice, it is much steeper than it looks, I am not just being a wimp).  The grass was thick and seemed like we were just pushing him into the ground and not up the hill.

We finally made it to the top and inside.

Oh how much I like to pull our car right into the garage.

Message shirt

In case you did not know, I am a sucker for message t-shirts.  Actually, I am kind of not a fan of them for Carter and Luke, I don't want them to seem bratty.  But give me a good message shirt for Brayden and I will  put it on him, no problem.

Looking through the racks I came upon this one...SICK GAME...others might not find this shirt funny when your child is actually sick (may be a little "sick" humor, sorry couldn't help it).

I did not purchase the shirt but snapped a picture to send to a friend, asked if I should pick one up for her son that was in the hospital, kidding (she and I have the same kind of humor and can find just about anything to laugh about). Thankfully she found it funny and sent me a picture of this one she found.

I, of course, thought her find was quite funny, especially since a lot of the conversations I have with her include some talk about poop and the need for our child to go.

What are some goodies you have found?!

Support Groups

Do you have a support group?  I mean a formal group that meets and makes plans.  Do you have a support group?  Have you tried one before?

I have tried some here and there. Some things I realized:

• Having support is necessary.  My support is not through a "formal" support group.  God has placed several families in our lives that have "special" children, families that we have known long before kids.  I need those people, I talk to them about anything and everything (and perhaps a little too much talk about poop for the average person).
• Meeting new people always helps.  Just like when you have your first child and trying to figure out all of those newborn tricks and adjusting to life, talking to other new moms always helps and makes you not feel as isolated.  The same can be said for moms of special needs munchkins.
• Ideas and Resources.  The special needs world is quite an interesting one when it comes to resources.  It all seems like a foreign language that you cannot understand until you understand.  Understand?  Sometimes you do not even know the questions to ask.  Having parents that know the process or have been through the process is a great resource.  There are programs and benefits that you might not even know existed.  Or even to just get ideas for doctors, new equipment and good looking wheelchairs.
• I do not fit well into a general "special needs" support group.  I do not relate well to moms that have children with autism, for example. Our experiences are so different that it can be frustrating.  It helps to be with those dealing with medically complex issues.
• Not having a specific diagnosis leaves you a little in no mans land, many parents find support within their child's diagnosis.
• I need things to be a bit more up beat.  I have a lot of humor in our crazy experiences...frankly we have to laugh because otherwise things would be to stressful and sometimes just pitiful. 
• I cannot dwell on what we do not have and what my child cannot cannot do.  Yes, there are times that I need to talk through things (despite all of what I write on this blog...I do a lot of my venting on this blog).
• My world cannot only be about medical things and dwelling on Brayden's needs.  Yes, we need to discuss all of that but we all have a life...and our life is (and should be) more than just about Brayden's medical issues.  And Brayden's is so much more than just his medical issues.  He is a funny little boy.
• It does help to have other parents that understand you.  Saying to a neighbor, "We had rough day", means something totally different than when saying it to another parent of a medically complex child...a rough day usually mean something much more dramatic/serious.
• Support needs to fit your personality.  Much like you find friends, your support needs to be a good support, something that helps you...not bring you down.  Again, I find that with great gals that I can call on at anytime of the day and I know will always provide a good laugh about something.

All that to say, find support but there needs to be a balance...the key is finding the balance (let me know if you know how to do that).

Let me tell you about this 6 year old boy

A little info about the big boy...while you enjoy pictures from his birthday festivities over the weekend.
His is so much more comfortable in his own body (finally), which allows him to show his personality more.  And let me tell you, he knows he is spoiled rotten.

Favorite Things:

• Movie - Happy Feet (still his favorite for the past few years)
• TV show - Mickey Mouse, he will "talk" with joy when Mickey Mouse is on, we have some episode on all of our devices, from iPad to the phone
• Loves snuggling, preferably with daddy
• Loves any book that his brothers read to him
• He loves music, really enjoys music
• Being pushed around in his wheelchairs, if he is fussy then he wants to be pushed around and watch out if you stop pushing...
• Rub his head and play with his hair, oh how he loves it
• He does love to be around other kids, he likes to hang out in the big chair in our family room and be part of the fun
• To eat - we do sneak a little lick of something every once in a while...perhaps a little icing or ice cream for his birthday...
  

 His dislikes...and he lets us know quite clearly:

• Touching his face - do not touch his face, he has never liked it and it an easy way to upset him
• Loud startling noises, ie the buzzer at a basketball game
• Getting dressed
• Too many activities, when he is done, he is done
• Mondays, just ask his school
• Tourniquet - he does not like it, he screams more for that than the actual needle



With his Great Aunt Janine who "demanded"
I take a picture of her with him

• Being woken up - do not ever, I repeat do not ever wake him up unless it is completely necessary.  He will be mad and mostly likely be mad the rest of the day

Then Brayden had a grand time at school for his birthday, party hat and all.  Brayden knew it was his birthday and the boy was all smiles all day.  Here are some of photos they sent from school (he tends to move his head a lot when he smiles so it is hard to capture a good picture...believe me, we have tried).
And of course we had to send in some fun treat for his birthday (in addition to having him all decorated).

Look at this happy boy.  He knew it was his day and he was milking it.

Finally wrapping up the festivities last night, a little ice cream cake at home (after his brother's school concert and soccer practice) .

The day of his birth

Brayden is six years old today.  I cannot believe it.  I still call him my baby boy (in fact strangers still call him a baby when he is in his wheelchair...not sure how they think this long boy can still be a baby...).  He is spending his birthday at school (hopefully on good behavior).

Yesterday for kindergarten registration I had to dig out his birth certificate, April 17, 2007.  I could not even bring myself to read over the words, I almost don't want to remember those days.  It was like lightening bolt flashbacks were coming to mind, images of his first few days.  I can go right to the moment after one of his first tests, when the radiologist told us his brain was abnormal and some parts may be missing...it wasn't so much what they were saying because I did not understand all the medical terms then, it was how they were saying it, that dreadful tone doctors get...we came back to our hospital room, I picked him up from the hospital bassinet and sat on the edge of the bed holding him as tight I as could, in complete disbelief that something could actually be wrong with my baby but I knew something was terribly wrong.  My heart races thinking about the fear and devastation we felt, that rocked us to our core.

His birthday is not about celebrating the day of his birth, I choose not to reflect much those dark first days (really first years).  It is really about celebrating we have made it six years.  Celebrating that he is healthier and happier than he has ever been. 
And the boy is happy today...I tried to grab a few smiles this morning as he was leaving for school.

For most of his life I have not thought about his future, not in the way I think about Carter and Luke.  I did not want to think about Brayden's future...out of fear.  For the boys I would buy clothes at the end of the season (on mega sale) to put away for the following year.  For the first several years of Brayden's life, I rarely bought clothes to put away for the following year, maybe just a few things.  Some how I felt like if I tried plan even a little bit, it would not be.  So we have been all about being the moment with Brayden.

Did I think we would make it to six?  Sometimes yes, sometimes no.  The doctors scared us often and made his future seemed so dim and that no matter what his age, he would not be able to do much (one doctor was even shocked when Brayden moved his arms...I was shocked that the doctor was shocked).  We did not know what life would be like with a severely disabled child that could not talk, walk or even eat.  Who imagines that for their family?  We could barely function in the moment so thinking ahead to potential birthdays or milestones seemed impossible.

Wow, he is six years old!  This little boy has changed our life in so many profound ways over his six years.       We cared for him, prayed over him, cried over him, held him, rejoiced for him for six years.  Oh how deep this love is.  We thank God for such a precious gift and having us be his parents.

Registered for Kindergarten

Today was the day for Loudoun County Public School kindergarten registration.  Today Brayden was registered for kindergarten.  Still a little strange to me that we had to go through the registration process for him since he has much more paperwork in the school system already than most kindergartners.  And we register his at our community school not the school he will be attending.

I remember registering Carter and Luke, the excitement and anticipation of them starting school, embarking on their academic time.  For Brayden it feels anti climatic (I do prefer the less drama, I was a mess sending him to school for the first time a few years ago).  His kindergarten class right next to his current classroom.  Not a huge change but saying he will be in kindergarten does sound too big, too old...he is my baby and he will be in kindergarten.

More paperwork for the kindergarten registration.
I did leave parts blank because I did not feel like explaining his medical stuff, it is too lengthy and his school already has his medical stuff, doctor notes, etc.

I do need to have his physical done.  It seems funny for him to have a normal, planned, non-urgent, non-specialist medical thing to do.

IEP for next year is done.  Registration is done.  Brayden is heading to kindergarten, whether I am ready for him to grow up or not.

Caption this:

I forgot to post this from one of his projects at school.  Brayden has some great expressions (and not to mention incredibly yummy cheeks).  Seriously, this face...

If only he could talk...
Would he say, "Get this thing off me!".

Or perhaps, "Really people, again with the craziness?"

Or, "What? What are are looking at?  I am still cute!"

Or, "I am not smiling.  Do you see me?!"

IEP and Kindergarten time

IEP, the Individualized Education Program.
Kindergarten, next school year will be the time for Brayden.

A meeting today that involved many people.  The IEP process and officially being in grade school involves a lot of people.

Brayden is NOT at our local school.  The school cannot accommodate him in any way shape or form.  I love the school for Carter and Luke but there is no way we would do it for Brayden.  It does not have a special ed program, the school is older and barely accessible, there would not be an appropriate place for him to have therapy or even just a diaper change.

So he is bused about 20 minutes from home to a school in Leesburg.  He has been attending the preschool special ed program there for 3 years.  For kindergarten, he will be at the same school just a room over.

Even though he will not be at our local school, all of his coordinating IEP meetings have to be there since it is our "home" school.

The meeting includes the Waterford school principal, the Waterford kindergarten teacher (even through she will not be his teacher nor will he be at Waterford), Brayden's preschool (ECSC) teacher, the Special-ed Grade school teacher (who will be his teacher for elementary school), the Physical therapist, the Occupational Therapist, the Vision therapist, the Speech Therapist...and of course Brayden and I.  Only a couple of people did not attend the meeting.  Brayden was so thrilled with the meeting that he slept, a very deep sleep while we all sat and discussed his kindergarten future.

I can understand how the IEP process can be overwhelming.  A lot of people, a lot of words and acronyms being tossed around and wow, a lot of paperwork.

Going into the meeting we knew the changes that were going to be made and how his kindergarten year would look.  The IEP lays out many descriptions, goals, steps to the meet the goals, as well as services Brayden will receive.

Brayden currently goes to school from 10:30 a.m.-2:30 p.m.  For kindergarten we will be attempting 9:30 a.m.-2:30 p.m.  I am not ready for him to go all day.  It took me a long time to get comfortable with him going 5 days a week.

What I did not realize is that I still have to register him for kindergarten.  I have to go to school with all the other parents on registration day and enroll just like everyone else does for "regular" kindergarten.  And oh yes, that is more paperwork.

Brace for this

We have a new brace.  We thought we were just going in for new AFOs.  The new hip brace was in as well.  A lot of the fitting, tweaking, putting together and it does the job.  Brayden was perfect for the entire fitting.

This brace is for him to wear at night.  It may appear to be incredibly restrictive and uncomfortable for him but that is quite the contrary.  He actually does really well in the brace.  It seems to provide him with support and input that makes him comfortable.

We have been through a few hip braces and so far this one seems to be the best.  It is custom fitted, we can adjust it based upon his needs and it will grow with him.  The purpose of the brace is to prevent his legs from going up into his "frog" position while he sleeps.  It will keep his legs at a 45 degree angle.

I won't go in to a full explanation of the why and what...hip problems, tight muscles, etc.  But this brace should help.

It just adds more minutes to his bedtime routine.  Of course, I had to ask if it was washable because of blow out diapers and all...it is very washable, thank goodness.

And he did get new AFOs, no pictures because they are getting boring...since we have to look at them all the time, can we get more exciting options?

Brayden's Spring Break

I wished a had more pictures of Brayden from our trip to Williamsburg but it was too cold (we even had snow during spring break).  He was wrapped up in blankets and not loving the idea of making himself available for pictures.
But I did get just a few...

One thing I learned about the colonial times...we were not getting Brayden around.  The days of touring the area did not provide Brayden much respite from the winds.  Someone would stand outside with Brayden while the others went inside to look around.  Brayden was not too pleased about the weather and he let us know.  He did handle it pretty well but he made us aware of his limits.  For lunch in Colonial Williamsburg, we planned where to go but then quickly realized we could not get him in the buildings.  We did find one that had a back ramp exit so we enjoyed a nice lunch.

While we were in Colonial Williamsburg, I received messages from the ER and from his doctor.  Brayden not only had the Flu type B but his cultures grew and he had a UTI.  Well, I guess he was allowed to fuss a little...being sick and all.

After the outside adventures, we stayed at the Great Wolf Lodge (quite an interesting place).  Carter and Luke loved the water slides and Brayden loved the never ending sound of water, he was so content just sitting at the water park for hours.

Brayden acted like such a big boy because he shared the little log cabin in our room with his brothers.  I told him he was camping with Carter and Luke.  The funny thing was, Brayden was a little too excited.  In the middle of the night we could hear Brayden kicking his legs and making his happy noises.  Carter would then talk to him not realizing that talking to him only encourages the noise because Brayden was excited to have him right there!

Am I fight or flight

Can I be both at the same time?  I fought to get out of town and fly down the highway.  I had to get away.

So the story starts a few weeks ago.  Jeremy has been traveling a lot the past several weeks.  The boys still have a lot of activities (of which Jeremy usually helps take to and from).  I have been taking Brayden out a lot and many times past his bed time to make it to his brothers activities.  And then getting him home is a task, his bedtime routine is tedious and takes some time.

Then Luke got sick.  At first we did not think it was much, just a normal kid thing when they get a fever and to goes away as quickly as it came.  But this time it did not go away.  I had to take him in, only it was a Sunday night.  Luke and I (and Brayden was coming along with me since Jeremy was with Carter at basketball) headed to Patient First.

Luke was getting more miserable by the moment.  A few tests and it came back that Luke had the Flu type B (the flu with respiratory problems), even though he had the flu shot which should cover this type of flu.  Luke was very contagious and not able to go back to school for several days.  We also missed the window to opportunity to take Tamiflu.  Luke was down for the count for an entire week.

Brayden had Botox in a couple of days so we had to keep Luke away from him.  A couple of days later Jeremy was laid up at home.  I still had to run the boys to all of their activities (a few too many).  Then Jeremy headed out of town again.

On Monday night Luke had a birthday party about 45 minutes away.  Carter had basketball practice as well.  His practice time was changed and the new time was 8:00-9:30.  I only had the nurse until 8:00.  We all had a very late night and I was getting overwhelmed and grouchy.

I felt like I was running around every where to get everything done.  And no time to catch up at home.

The next morning Brayden started to look under the weather.  Major constipation, major.  A little bit of a fever.  And his resting heart rate was really high, in the 160s when he was sleeping.  His blood sugar was spiking in the 150-160s.  What to do?

Oh did I mention we planned to leave for Williamsburg that afternoon.  I had not packed a thing yet.  And in case you did not know I am a packer, a planner.  I like to get everything very organized a head of time for any trip.  I thought I was going to pack while the boys were at school.

Rewind to two years ago, we had the similar trip planned and we had to cancel because Brayden ended up in the hospital.

I sent the boys to school that morning, they were thinking that as soon as they got home we were loading the car for Williamsburg (Jeremy was still out of town and meeting us a few days later).  I decided not the send Brayden to school and call his pediatrician.  It was decided it was best to take Brayden to the ER.

Off to the ER.  A few tests and it came back that Brayden had the Flu type B...great.  Got him some medication and we were going to "work out" the constipation issue at home.

I was still planning on leaving for Williamsburg in a few hours.

On our way home, Brayden, his nurse and I were on the country roads of Waterford and I hear a loud pop/bang.  My tire blew.  I watched the tire pressure dropped to 8 in a matter of seconds.  I drove to the Waterford school parking lot.  I hopped out of the car and saw a very, very flat tire.

Williamsburg?

I did my best not to burst into tears or start cursing like a crazy person.  I called AAA and texted Jeremy (not really the best text I have ever sent...it might have sounded a little crazy) who is still out of town.  We waited and waited in the parking lot.  The AAA guy came, put on the spare tire which is a very different size than the tires so I cannot drive the car other than to the shop (the tires are special order and take a couple of days to come in).

Tears did come when Jeremy called to check on me.  I begged him to get me out of town, I needed it and I did not want to disappoint the boys.

My father-in-law came to the rescue.  Followed us home and then drove me to his house to get his Hummer for us to drive to Williamsburg.

Was it a still a good idea to go?

Um, yes.  I never get out of town and this was not going to be canceled.  Lord, are us telling us to bail on the plans or persevere?  I went with the persevere option.

It is 3:30 p.m.  I have not packed a thing.  The nurse helped me gather Brayden's things.  Carter worked to get some things while Luke and I had to run the dog to the kennel.  The boys and I packed in about 45 minutes.  More things tossed in the suitcases and then the back of the Hummer.  I have no idea how I fit it all in but the boys and I made it happen, there was a lot of shoving.

We were going to Williamsburg.  I was fighting to fly down that highway.

We finally left the area around 6:00 p.m. (after a pit stop at the pharmacy for more of Brayden's meds).  I was beyond stressed.  The boys knew it, I think they sat in silence for most of the ride.  And I was starting to get really tired.  We finally arrived around 9:30 p.m.

Brayden was doing pretty well.  But a couple of days later the ER called.  Brayden's cultures grew and he also has an UTI.  More medication.

We still had a good trip to Williamsburg.  Now I need another vacation to actually relax or a really long nap.  Oh and I still need to get my car to the shop, I left it in our garage and decided to ignore until we got home.

Botox in a new place

Time for Botox.  Brayden gets Botox in his legs 2-3x a year to help the muscles in his legs (and hopefully to prevent any major hip problems).  We have done Botox for him at Childrens's and at Inova Fairfax, two places we are very familiar with and comfortable.  Brayden's ortho surgeon was only available at Inova Alexandria, a hospital that we have never been to.  Brayden's procedures have always been done at the larger hospitals because of his many complicated medical issues and they were equipped to handle them.  Thankfully Brayden has been really healthy.

I was a bit nervous about going to a new place but it was that or wait another three months for availability at Fairfax.  We loaded up to head to Alexandria.

The hospital was great.  Much smaller than the others and things were actually running on time (that never happens).  Brayden was a happy guy, always loving any extra attention.

Until they put a cap on him.

They wheeled him away and about 30 minutes later we were in the PACU with him.  He woke up happy.

Several Botox injections in his legs (the little red dots).  His legs are covered with the iodine and marker the doctor uses to identify the areas pre-surgery.  And that iodine and marker takes several baths and scrub downs to get off.

Headed home and even before rush hour traffic (that also never happens).  I am now a fan of Inova Alexandria.

Dancing in the Snow

We are here preparing for the big snow storm (that should be arriving any minute).  In the spirit of big snow and us hoping for lots of snow, here is a picture of Brayden's Snowy Day project from school, based upon the book Snowy Day.

Can I just say that this is how I imagine Brayden in heaven one day?!  Happy, smiling, free, frolicking around without pain....and, minus the red suit.

Those Happy Noises

I was working on an information packet about Brayden this past week (more on that later).  Some questions related to his communications skills.  He can let us know when he is happy, the majority of the time we translate him being still and content as him being happy.  Sometimes we get a real treat when he really shows off, making happy noises and it oh so wonderful.

Here is the happy guy in action.

IMG 0808 from Carrie Jenkins on Vimeo.
Sorry the quality is a little weird since I uploaded it from my phone.

How about this shirt?

Out shopping today, looking specifically for soft elastic waist pants for Brayden (they are so much easier to use and harder to find the bigger he gets).

You know I am a big fan of message t-shirts for Brayden and I do like ones that have funny pictures or sayings.  However, this t-shirt may be too much...yikes.

What do you think, suitable to wear for an appointment with the GI doctor?!  Or to any doctor?!

In case you were wondering, I did not purchase this shirt.  I have seen many pictures of his insides, in many different ways.  I do not need a t-shirt as a reminder, although the boys could draw on his feeding tubes...

I did find much cuter shirts for Brayden.

Pump problems - BEEP! BEEP! BEEP!

BEEP!  BEEP!  BEEP! (and on and on) is what I kept hearing this morning.  The high pitched, ear piercing sound of Brayden's feeding pump.  A beep to alert that there is a problem.

The nurse worked on the pump; I worked on the pump; changing bags, adjusting settings, turning on, turning off.  A few minutes would pass, the pump seemed to be working and then the beeping would start again.

So we pulled out the back-up pump.  The back-up pump is quite a fickle little thing.  Technically we have rented it for so long that we now own it (the way our insurance and supply company handles it not us) so we cannot exchange it for a new one.  It works for a couple of weeks and then seems to need a rest.  So we swap the two pumps back and forth.

Brayden's pump is a Kangaroo Joey.  It seems to me that the feeding pumps are not really meant to run 20+ hours a day, every day of the week, they are made more for bolus feeds here and there throughout the day and not having to run continuously the way we use them.

After trying the back up pump, we heard once again that high pitched BEEP!  BEEP!...

The back up pump was not working as well.

We cannot give him his food by syringe effectively.  His GI system cannot handle too much at once so his pump is set at 42 ml/hour.  That means he gets 0.7 ml per minute (that is a tiny amount, you spit more than 0.7 ml).  I cannot do a syringe that slow for 20 hours.

It was 7:30 a.m. the medical supply company was not open yet.  However, one can call the answering service that will alert the on-call staff.  So at 7:30 the phone calls started.  I waited to hear back from the on-call person.  Two hours go by and no phone call.  I call again, this time the office is open...they have no ticket and no information from the answering service and we start that process again.  Again, I wait and no return calls to confirm delivery.  More phone calls and being on hold for soooo long.  Finally, they find that the pump is out for delivery.

The pump finally arrived around 2:30 p.m.

We cannot survive without his feeding pump.  I may have said to the medical supply company, "I need to know that the pump will be at my house soon otherwise we need to make plans for my son to go to the hospital", not to be too dramatic but I wanted a serious sense of urgency.

And when the pump with delivered the tech showed me how to adjust the volume of feeding pump.  Me, "You mean it doesn't have to be such a terribly loud noise?!"  Oh yes people, we have had several Kangaroo Joey pumps in 5 years and I just found out today that the BEEP! has volume control...the one bonus of the day.

Lots of Love from Brayden

Happy Valentine's Day from Brayden!  He was on his best behavior today at home and at school, where he even got to go see the fifth graders Valentine decorations.
Of course he was decked out for the day (pseudo tie t-shirt and a flashing heart necklace).  And of course he was smiling before and after the camera but I tried to get a smile of camera...can you tell he is trying not to look in my direction!

He had lots of goodies to pass out.

And he came home with a few of his own.

He is my chunk-of-love, lots of kisses on those yummy cheeks.