Wednesday, September 26, 2012

What they know

We have always talked to Carter and Luke about Brayden.  They have been to hospitals more times than they can count.  I often wondered what impact it has on their lives or how much they understand.

Well here are some comments from this past week:

I was telling the boys the schedule for the week, which included Brayden's botox at the hospital.
From Luke (7 yrs old, our talker):  "For his botox, will he go to sleep by mask or by needle this time?"
Me (wondering how did he know he could go under by mask or needle):  "By mask and he will fall right asleep."  Maybe Luke has it in him to be a doctor...

Later in the week, I had Brayden, Carter and his friend in the car.  There was a discussion about a boy playing football with braces.
Friend:  "His is the boy with braces."
Carter (9 yrs old, our thinker):  "Really, what kind of braces!?"
Friends: "You know, braces."
Carter:  "But where are his braces?"
Friends:  "Braces on his teeth!"
I am driving listening to this conversation.  Braces in our house, mean AFOs, back braces, etc.  Carter has seen a lot those kind of braces.  Carter was trying to picture a boy playing football was some leg brace on...not at all thinking the more common orthodontia braces.

Sunday, September 23, 2012

20 minutes for Botox

At the hospital for over 6 hours on Thursday.
For a twenty minute procedure of Botox.

Thankfully Brayden was quite happy all day.  I was hungry waiting in pre-op for so long so I was sneaking snacks (note to self,  pack snacks that are quiet, no loud packaging or crunching).

Shots of Botox up and down both legs.  His legs have been very tight and his hip positions are looking troublesome.  Praying the botox helps with his comfort and position.
The orthopedic surgeon signs all the areas for where he will have botox then I sign the areas as well...not signing on paper but all over his legs, front and back.
The procedure is very quick; about 20 minutes, including anesthesia (just to sleep by mask).  But they treat it like surgery so food was stopped at 4:00 a.m. in the morning.  By the time he was wheeled back it was 2:30 p.m. and he was sucking/smacking his lips (something he seems to do when off food for too long).

He was in the PACU and not wanting to wake up.  He was holding tight to my precious boy.
He did wake up when they started removing the monitor stickers, etc.  And he was made so he went into a screaming fit when he holds his breath and turns blue.  The boys does this often but oh how I wish he would not do it in the PACU.  The nurses were getting concerned and called the anesthesilogist, put him back on oxygen...while Brayden would scream, hold his breath and then do it all over again.  I continued to reassure him that he does this and is just fine once he calms down.

Well, he did calm down but then starting seizing.  I was saying "Oh, he is fine, this is just his normal seizure.  We can home go."  The nurse was cautious but filled out our discharge papers.  By the time the anesthesilogist came Brayden was fine and we wheeled out.

The botox seems to have helped a little already.  It also helps dressing him.  Now that cooler weather is here, putting pants on a child with tight legs is a tedious task for all involved.  And praying to avoid any major hip problems for a long while.

Monday, September 17, 2012


40 is the magic number.
No I am not turning 40.

Brayden almost weighs 40 pounds.  He weighed in last week at 39.4 pounds.
What is the big deal about 40 pounds?

When Brayden weighs 40 pounds he can no longer be lifted/carried by his nurse.  That is the 40 pounds Brayden needs to be lifted by two people...the nurse and me.

I absolutely understand that this protects Brayden and the nurse from injury.  Carrying a 40 pound boy, who offers no help, is hard.  But now I have to be there every time Brayden needs to be moved.  This time of year is not that big of a deal; Brayden is at school Mon-Fri where there are plenty of people to help move Brayden.

But what happens when he is not in school?  He spends the entire day in bed because the nurse cannot move him?  I really do not leave home for hours and hours, leaving Brayden and the nurse at home.  But now I have to be there to move him in to the shower, out of the shower, into the bean bag, into his wheelchair, into his stroller, into his tomato chair...and back out of all of it.

My biggest battle the past year has been about his bed.  I do NOT want him to be a "bed" kid, a child who is basically bedridden.  Brayden is happy in his bed but it is not good for him to be in bed all of the time.  He is a five year old boy who needs to be up participating in life.

It just seems like I finally have a taste of freedom, being able to leave the house for more than a couple of hours at a time, and now those windows of freedom are getting smaller once again.  What do other families do?

It is great that Brayden almost weighs 40 pounds, we have fought for him to gain weight, for him to be healthy and is his doing great.  Moving him is not going to get any easier...

Friday, September 7, 2012

Beauty in the Mail

Many months ago I was reacquainted with a fabulous gal that I had known when Jeremy and I were first married.  Those years ago she and I traveled (with the church) to Romania to work with orphaned children, way up in the Transylvania mountains, where she returned to live and work for a while.  Over the years we lost touch.

Flash back to today, she is a mother, as am I, living in NoVA.  Her heart has only gotten bigger over the years.  We have had very brief conversations here and there, passing by each other at church.  A couple of emails here and there.   Just from those small interactions, she did something wonderful for me.

Yesterday, Brayden and I headed downtown for the Children's ketogenic clinic.  I love to drive in Washington DC, looking at all of the buildings and people.  As we head to Children's, we always pass the National Postal Museum.  I sit on North Capital every time and look at this building.  I have yet to enter this building but I am fascinated with it for one simple reason.

Above the entrance is this beautiful quote.  A quote about the written letter...which is becoming a lost art.  How a simple letter can have a bigger impact on lives.
Reading this yesterday reminded me of of my friend...the compassion and love that she showed me in such a simple way by mail.

Seeing words written in a card or letter is so lovely.  How exciting it is to get an actual letter in the mail!  Some one taking the time to send a letter, finding the right stationary, thinking of you, seeing their handwriting, their own is to be cherished.

You see, over a year ago, I started receiving these hand made cards in the mail....from complete strangers.  My friend organized women, most of whom I do not know, to send me notes.  Cards filled with notes of love and encouragement.  Cards that seemed hand delivered from God, knowing my needs at that moment, right into my mailbox.

Being a mother to a child with many medical needs, can be very isolating.  Most of the effort, compassion and love is focused on it should be.  However as the mom, you very quickly become last priority.  You know you have support, but the majority of the time you have it in the way of practical things (ie watching the boys, meals, etc.) which is what most people know how to do.  Emotional support can be harder to come by and frankly hard to ask for and understand the right time for it.

But these cards, these precious cards, came in my mail over a period of months.  Something simple but something so thoughtful and cherished.  I have kept them in a couple of places so that I can take them out and read their sweet words.  Women that I have never met, praying for me, loving me, consoling me...enlarging my (not-so) common life.

Thursday, September 6, 2012

Not a cup of sugar

I have a handful of really great girl friends that are moms to a special need children.  Last week was one of those weeks when we realize how great it is to have each other.

Many phone calls, emails and texts flying around last week...

One mom was heading home from the hospital.  Coming home from the hospital is like coming home from vacation but a million times worse (you were not on vacation but in the hospital) because getting all of the gear situated, translating all of the hospital things into home use, etc.  It is quite a transition.  My friend called me, they needed a special attachment to give medication through the g-j tube.  It was already the evening and they did not have a way to give the meds and could maybe get something the following day.  Did I have anything of Brayden's they could use?  Brayden no longer has a g-j tube but separate g-tube and a j-tube (see above photo).  But I did save some of the hard-to-come-by medical things, including the attachment, that I stored away.  She lives about 1 mile from us so she came over and I handed over a bag full of "goodies".  I have definitely used some of her medical supplies the past.

We do not call each other to get a cup of sugar, we call to swing by for medical supplies.  How great to have someone right down the road.

Another mom was rushing her son to the hospital.  It was late night and early morning of texts, whispering phone calls (whispering from her since her son was finally sleeping), lots of praying, etc.  Some how she and I can always find something to laugh about...many strange/interesting/bizarre things happen at the hospital and it is nice to have someone understand and find some humor in it all too.

One mom was heading to the hospital for her daughter's first g-tube.  We talked about the surgery, equipment, formula, etc.  Some how coordinating the surgeon, GI doctor and nutritionist seems to be a task...we know.  Trying to find the best option and feeding schedule for your child.  The parents wanted to see want the g-tube, Mic-Key button actually looked like (not just the pictures online), so I texted a picture of Brayden's buttons.  Cute belly, right!?

Then over the weekend she and I headed out for the evening to see the King and I, at Wolf Trap.  We both prepared the daddies with supplies and bedtime routines, then headed out...with our phones in our laps all evening.  I am happy to report there was not a major crisis (just some vomiting).

Just to balance it out, I did have a friend come by to get some eggs, another dropped by her fabulous spaghetti sauce,...sometimes things are actually a little normal for me.

Saturday, September 1, 2012

My new favorite t-shirt

I cannot even begin to tell you how many times a week Brayden gets stares from complete many times complete strangers engage me in conversation, asking about Brayden.

Best way I can relate the experience to other mothers - it is a similar experience to when you are pregnant.  Complete strangers touching your belly, asking when you are due, what you are having, names...even saying that dreaded line "You look like you could have that baby any day!"...when you are only 6 months along.  Many offering unsolicited advice or comments.

Many of the conversations about Brayden are harmless and I truly do not mind talking to people.  Complete strangers have touched Brayden, asked his diagnosis, his name, age...I even had people ask me about how long he is expected to live.  And some offering unsolicited advice or comments..."maybe he is tired and needs to go home".

A lot of the time children stare; their stares are very innocent and taking in the world around them.  But then the mothers shew the child away, for reasons I am not sure of.  I often do not know how to handle the stares of adults.  Sometimes the look is with knowing seems to me they know someone who also has special needs or just compassion.  Sometimes the look is curiosity.  Other times the look is, well...not so nice; staring at Brayden with harsh eyes and not even glancing up at me.

So I found the best t-shirt at Old Navy (I am a sucker for message tees for Brayden but this one takes the cake!).

Brayden may wear it until it is shreds of fabric.

His nurse reminded me of this verse the day Brayden wore this shirt.
Am I now trying to win human approval, or God's approval? Or am I trying to please people? If I were still trying to please people, I would not be a servant of Christ.    -Galatians 1:10