Thursday, November 28, 2013

My Happy Turkey

Brayden loves the holidays...that means no school and a lot of family time.
He couldn't be happier at Thanksgiving.

Monday, November 25, 2013

Bones, bones, them bad bones

Brayden is out of his massive leg cast.

A long afternoon at the ortho doctor.  More x-rays, more discussion of what to do for him.

Does this look like a boy who will cooperate for x-rays?  Try to place his legs in the correct position for x-rays and all he wants to do is swing them out and off the table.
Oh I hate x-rays for him, it is such torture and sometimes actual pain to get him in the best position for the best pictures.

The femur doesn't look like it is healing as well as it could be, something about bad absorption.  This ortho doctor agreed with those at Children's that Brayden should get a bone scan.

Then I have to spend a lot of time getting together his records, reports and x-rays from this office to those at Children's (can be a time consuming task).

Getting Brayden home was definitely easier without the cast.  However, the next couple of days were rough.  He was not comfortable and I worried something was really wrong with his leg...times of screaming pain when I would move him.  Thankfully that stopped and he was more comfortable.

Still waiting to hear about his labs.  Then we have the bone scan Dec 3.

Tuesday, November 19, 2013

Craft time

American Education week and lots of activities at school.  This time it was Brayden's turn.  Parents were invited to class for craft time.

A noise maker.  Brayden was a little help holding the beads and feathers.  We hold up two items, within his sight, for him choose.  He will direct his gaze to the one he would like.  So he picked a few of the beads and so did mommy.  And Brayden was not pleased with it at first, he really wanted a morning nap.

It was a nice time to see the kiddos in his class as well as the parents.  All the kids parked in their wheelchairs, enjoying their time with their parents and the parents filled with laughter (about all kinds of things that would never happen in Carter and Luke's classes).

Thursday, November 14, 2013

From head to toe

It was a lot of lab work...I think 14 tests?!  Oh and Brayden is such a ha

Brayden had no idea that staying home from school was not going to be relaxing.

We started with a house call for Brayden's haircut.  Love that Micki came to rescue his hair, there was no way we could take him to her barber shop with that big cast.  He hair has been out of control.  With Thanksgiving and family pictures coming up, haircut had to happen, in a cast or not.

It was a lot of hair.

But Brayden's day did not stop there.  We had an appointment with the ketogenic clinic at Children's National.  Thankfully the neurologist and nutritionist prepared the lab requests ahead of time so we could arrive early to wait in the lab.

It was a lot of lab work...I think 14 tests?!  Oh and Brayden is such a hard stick, it feels like the blood cannot come fast enough.  During the lab work, my phone rang from a friend who was getting Carter and Luke from school.  I worried something came up so I answered the phone, with the bad reception in the belly of this hospital, all I could hear her say was "Are you okay?".  I had no clue what was going on but at the moment a Children's Hospital (in Wisconsin) was on lock down because of a shooting.  My friend just heard a shooting at Children's but she sent me a text to let me know what was happening but it was not in DC.  As I was trying to answer the phone, I snapped a photo of Brayden (the app open from trying to get pictures of his new haircut before we left the house but he would not cooperate), with a little cropping, you can see his desperate plea for help and crying to make it stop.

Oh how I wish he didn't have to go through this.  He hates it from the moment they pull up his sleeve.

After the lab, we headed down to neurology for the ketogenic clinic.  Lots to discuss.

Brayden has been on the diet for over 3 years.  The diet can have side effects that include bone density.  Brayden's medications can have side effects that include bone density.  The ketogenic team is sending Brayden for a bone density scan and meeting with an endocrinologist.

Brayden's seizures have been more frequent.  And with the increase of seizures, he seems to be gagging at the end of each seizure and sometime during.  Thankfully his O2 seems fine.  But these seizures happen every time he wakes up, even if he just had a quick cat nap in the car.

So we wait for the lab results before adjusting his keto diet or medications changes.  We wait for the bone scan and appointment with the endocrinologist.

How does Brayden feel about all of this?
Still mad and still in protest of being poked and picked at all day...see his chubby little hands are still in a fist, his way to showing he is not pleased.

Monday, November 11, 2013

Like an old smoker...

Brayden has been under the weather.  Several days in a row with fevers and a cough that makes him sound like an old man who has been smoking for decades.  With that cough comes a horrible retching that has strangers taking cover and us cleaning him up.
A trip to the doctor and some antibiotics with a side of nebulizer treatments.  Surprisingly we have never done neb treatments with Brayden.  He has had a wide variety of breathing masks over the years but never for something simple like neb treatments.
Putting the mask on was a task, then finding the best position...and keeping the mask on was another task.  He would finally give in but still showing his protest with an angry face and his little hands in a fist, his signs that he is still case he did not make it clear before.

Not a fan but it did help.

Saturday, November 9, 2013

Should have been a hurdler?

Despite having a giant green cast, Brayden finds a way to get comfortable.  And this is it...

A big hurdler pose/stretch.

On top of having a cast, Brayden is not feeling well.  A fever for a couple of days and lots of coughing.  Some how he cannot get control of his coughs.  The coughs turn into gagging, which turns into vomiting, which turns into the violent retching.  He has been pretty miserable.

Being sick, lowers his seizure threshold.  So yesterday morning was a 30 minute seizure with a dose of Diastat.  Between the Diastat medication and not feeling well, Brayden has like a zombie.
Praying the time being sick and time with a cast are both short.

And just for a thought, imagine me trying to get him in the car with his leg sticking straight out, while he is gagging/vomiting...trying not to get it on me or him, because changing him with the cast on is a task that is not enjoyed by well as loading him in the car.  It is a sight, and some may wonder if I am actually torturing but it is quite the contrary.

Thursday, November 7, 2013

The Green Monster

No I am not talking baseball.

Brayden's is in a large green cast.

A few weeks ago, Brayden had Botox in both of his legs...concentrating more on his right leg, which is always problematic.  Brayden has had Botox many times and usually we see quick, positive results, meaning his legs actually relax a bit more. 

However after this past round of Botox, we did not see any improvement.  In fact, the opposite.  He was pulling that leg tighter and more protective of it.

So we made an appointment with his ortho.

The appointment did not start off on the best foot. 

They could not find Brayden's appt (and they already over book), so we may have to wait.  Then we find out the ortho dr is joining a new group.  Which means we have to complete those dreaded Medical History forms.  At this point in Brayden's life, it takes me forever to fill it all in...and there is never enough room (or boxes for all his medical issues), so I write all over the paper.  And then I get lazy...the part when asked about procedures and surgeries, I list a few major surgeries and then write in "lots more", figuring if they really need the info they will ask for it.

On top of the medical history form for the new group, we find out that this new group does not accept one of Brayden's insurances...I will blog about this later.

We finally make it back to the room.  The ortho doctor checks out Brayden and she can immediately tell things are not quite right with his leg.  We discuss the previous Botox and that it just may not have worked this time around and may need to have surgery to lengthen/cut the muscle in his right leg (which we have done in the past).  Just in case she wants x-rays.

Oh how I hate x-rays for Brayden.  We have to straighten his leg, the best we can, keep him still while they can get the images.

The images came out showing the bowing in his femur, which we knew about.  But also some tiny fractures, some healing, some new, in the lower part of his femur.  The best way to explain it, is like bending a stick and it starts to splinter right before it breaks.

This may not be something to cast him for but it can help.  However, the cast must be put on with his leg extended... and his leg has been retracted, tight, up in his frog leg are we going to get it straight?!

We did get it straight, with a lot of screaming and crying.  Brayden sounded tortured and screaming in pain (like I have not heard from him in some time, oh it seemed like we could not get the cast on fast enough).
Then we realized, we had to get him home...with his leg straight in the cast, sticking straight out.  All of his previous casts have been with a bend in the leg.  We had to rearrange the car seat to the other side so we could push the front seat all the way forward and prop up his leg.  It was awkward to get him in the car.  And yes his pants are hanging off, his left leg...just the state of things once we finally got his situated...
The quick check-up with the doctor turned into a 4 hours appointment and the big green monster of a cast.

By the time we got home, Brayden was miserable.  He was screaming.  I called the pediatrician, trying to figure out what medications we could give him to help with his extreme heavy of medication should we give him?  So a little bit of medication and Brayden dosed off.

Now what to do about school?

First problem, no pants.  Brayden's pants could not get over his cast.  And all of his previous cast experiences have been in warm weather so we could do shorts.  I ran to WalMart very early this morning to find some big cheap sweats (which is what we all would secretly like to wear everyday).  Then I have to drive Brayden to school.  With his leg straight out, he cannot fit in his wheelchair for the bus and school.  He can fit in his jogger but that cannot be used on the bus.

So off to school he went.  I dropped him off, he seemed okay.  And I will pick him up before the end of school so I can get back to Waterford for his brothers' bus pick up time (Brayden's school is about 20 minutes away from home).

The cast should be on for only 2 weeks, so only two weeks of awkwardly carrying him, putting him in the car and driving him back and forth to school.  Hopefully he is comfortable.

Monday, November 4, 2013

What to say?

Recently, a family friend had an unsettling ultrasound.  The day they found out they were having a girl, was the same day they found out she has some major medical problems.

We can relate, so we had mutual friends/family ask us to contact them.  What would you say?  I just wanted to be real (no fluff).

Here is some of my email to those parents:

What do you say to a parent that just found out their child will be disabled/medically fragile?  Are there words of comfort?  Words of wisdom to pass along?
No not really, not in that moment…frankly for those of us that have been in that nightmare, it feels just like that, a nightmare.  Your head is spinning and you can barely put together a coherent thought.  A lot of words and support coming your way but you have no idea what freight train just hit you or be able to even get a grasp on to what it means, let alone try to hear and talk to others.  It all just feels like one big fog that you just want to lift.
And that is okay. 
So going through that experience what would I say?

It sucks.  It really truly sucks. And it is okay to feel that.  It does not mean you do not love your child or that your faith is failing.  Because there are far few things worse that having your own child struggle just to exist.  And it just plain awful.
It rocks you to your core.  A picture of what you thought your life/your child would be is shattered, shattered beyond recognition.  How could this happen to my baby?!  To my family?!  Hearing all of those…your baby can’t, won’t, etc.

Fear sets in.  Fear like you have never known before.  Fear for my baby.  And not in that overprotective mom fear, a real deep fear.  A fear that now I know bad things can and have happened to my child…so what will that bring?  Fear of the unknown.  You know firsthand the frailty of life.

All the things you think you know about babies and parenting are tossed right out the window.  For this is a path that is uncharted and will leave you feeling around in the dark trying to take care of your child.

How many times have you have heard, “God does not give you more than you can handle.”?  Frankly, that is crap (yes, I said crap.  Family, ignore that I just said that, sorry but it is).  God does give you more than you can handle, way more.  So much some times that is feels crushing.

And that is okay.

It shows us how much we need Him.  It shows us how much He is in control and how we just do not have control.  It shows us that our children are not ours but His.  It shows us how much we are absolutely dependent on Him (can I just say that I would like to learn those lessons another way…that did not include my children).  We cannot handle it but He can.  Those basic truths that you already know will be your hand holds.

And we hear, “God choose special parents for this special child.”  Blah, blah, blah, is what that sounds like at times.  I mean, thanks for the compliment but I have no need to be special or have my child be “special”.  The word “special” takes on an entirely new meaning.  That word is said often with pity and sorrow towards you and your child. 

All of it is hard.  And yes it sucks, and it may for a while.

But you walk through it, sometimes crawl through it, sometimes kick, scream and cry your way through it.  You will pray more and have more people pray for you than you even thought possible.  Not saying you will go through it with flying colors, but you will get through it because that is what you do as a parent…you do anything to help and protect your child. 

You will find love.  A deeper love than you ever thought possible.  You will love that child more and more (as well as your other children).  You will find strength and stamina that can only be explained as His divine hand holding you.  You will find joy, real true joy.

All of the good, bad and the ugly (Jeremy and I are both ugly criers, snot bubbles and all) are worth it because you love your child.  Oh how you love that child.  You will love that child no matter their abilities.  You will see past all of the diagnoses/medical issues/labels to just see your child, to see your child that you love and will be a part of your family (and don’t let all those doctors cloud that).

What you thought your life path would be has changed, changed drastically in just a matter of moments.  But that fierce motherly love kicks in at the same time.

Shortly after Brayden was born we knew his life verse:  Psalm 139: 13-18
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

For He knows the plans.