Wednesday, January 30, 2013

Those hips

Back at the orthopedist.  Several things to discuss.

His AFOs (Ankle Foot orthodics), he has grown so much, that his already pudgy feet have been oozing out of his AFOs.  The AFOs are not too short, they are not wide enough, very, very, fat feet.  So a prescription to get new AFOs.
His hip brace.  I have been putting Brayden in this hip brace at bedtime...well I have not been so diligent about putting it on every night.  I just do not see the benefit of the brace, it just hold his legs in the position that he would anyway.  Talked with the doctor about the brace...that brace was not exactly what she ordered for him.  So a prescription to get a new hip brace.
Then his hips.  For the past couple of years, there has been concern over his hips.  One doctor wanted to proceed with some major surgeries...we were not convinced it was the right time for Brayden.  Instead we have been treating his hips with Botox, relaxing the muscles to decrease the pull on his hips (and of course with physical therapy).  It has been helping and Brayden has yet to have a hip displace.  We have had many x-rays and talked to a few doctors, leading us back to his original ortho doctor.  Today was another day for x-rays.
The news...
Brayden's hips have never looked better.  There was concern because he has grown so much lately and his legs are incredibly tight; his hips could have been likely to go out of socket but they have not so it is a really good sign.

As usual the ortho appointment is long, a couple of hours.  Brayden made it clear that it was too long for him.
But I didn't mind, how can you say no to this sweetness?!

Monday, January 28, 2013

Wheelchair down the icy hill

Oh the weather here in Northern VA is always interesting.  Snow is rarely just snow.  It seems to always come with a mixture of freezing rain and sleet.

Now, how to get Brayden down to the bus?  Just a small hill of a driveway but could be a big problem for the wheelchair going down if things are slick...chains for the tires?!  Oh, we just go down very slow and put down a lot of ice melt.  Some how the driveway seems so much longer and so much steeper when it is icy.

Let me tell you how much he loves to get buddled up (he is very good at protesting the process of getting on all of the layers).

Thursday, January 24, 2013

Come hang out

Having Brayden's room on the main floor has been amazing.  I thought it was going to be a big adjustment...especially at night.  Thankfully he sleeps well and we rarely have to get up with him anymore.

Having him on the main floor has made him feel like his is in on the action.  We can see him straight from the kitchen.  And his room easily becomes a great hangout (especially since he has a TV in the his room).  Carter and Luke can often be found right in bed with him.
And of course the great protector dog...

Thursday, January 17, 2013

They are in this too

We are a family of five.  Three boys.  Carter is 10 years old.  Luke is 8 years old.  Brayden is 5 years old.

Parenting is hard, it is great joy that requires so much.  It is hard to be a parent to all boys.  It is hard to be a parent to a child that has special needs; a child that requires a lot of medical attention.  I can tell you what it is like to be the mother.  Jeremy can tell you what it is like to be the father.  We can tell you all of the wonderful good and all of the crazy bad.

But what is it like to be the sibling?  To know that their brother's needs must come first.  Know how to use the feeding pump and a suction machine.  Know hospitals and ERs better than most adults (and the EMTs).  To spend many hours in doctor offices, even when it was your day off from school.  To know many different kinds of seizures.  To catch projectile vomit from your brother.  To ride in the car for hours in silence just to not upset their brother.  To ride in an ambulance.  To have many plans canceled because of yet another medical need.  To have parents not be present in body or mind on many occasions.  To be sent to yet another house because their parents had to get back to the hospital.  To hear, "I can't right now, I need to take care of Brayden", too many times in a week.  To explain to children and adults, why they brother cannot talk or walk or eat.  To know the frailty of life.

Do I worry about them?  Absolutely.  We do our best to be parents to all of our boys and address each of their needs but it not always that easy.  Thankfully, this past year we have been able to focus on them more since Brayden has been very stable.

I do know that Carter and Luke are siblings who know unconditional love.  They know life is not fair and it cannot always be about them.  They know God has a plan even when we do not understand.  To them, Brayden is their brother and this is their life.  They see it all so simply.  They see their brother.  They are the only ones Brayden allows in his bed.  They understand him so well.  They are the ones I find caring for Brayden and hanging with him, just because he is their brother.  The sweetness that I see when they interact with him will melt any one's heart.

I know many of you have seen this video of Sports Illustrated SportsKid of the Year 2012.  It is about a brother loving his brother, plain and simple.
And by the way, I showed Carter the video and he said, "Brayden would not like to a triathlon, he would probably get upset."  
So true, Brayden can only handled so much fun...

Tuesday, January 15, 2013

Is it little or big?

Assessing things with my limited medical knowledge has been put to the test time and time again.  Yes, my head is cramped with more medical info than I ever dreamed possible.  I actually understand the vast majority of the words/terms/tests that the doctors discuss.

Yet some how, through it all the one prevailing assessment tool is the God given mother's intuition.  I can go through a check list of medical things to help us make decisions but all the while my intuition is like a voice in between all of my logical thoughts...perhaps the whispering from God, telling me that things will be okay.  Sometimes my thoughts are begging for a clear message on which direction to take.

Many time it feels like I may be walking a fine line of just letting things go and mother negligence...ok, may be not negligence but perhaps times when I need to take things more seriously.

For example, this past week some of Brayden's "ugly" little signs have rearing their "ugly" little heads.   Increase in seizures, those troubling looking seizures where he looks and acts trapped.  He had a diastat (his emergency seizure medication).  He has not had a diastat in months.  And a couple more times he had more of those troubling seizures.  He does have seizures daily but these are not his common ones.
Then drainage, lots and lots of drainage in his g-tube drain.  And we cannot forget his irritability, inconsolable irritability.  Then we have started to see his blood sugar has been having blips of being too high.  While that may be common for most people to have days of highs or lows, Brayden's diet is so controlled that things are measured to the tenth of a gram.

It is all something little or really a bigger problem?

Mr. Sunshine...
Could it all (minus the blood sugar) just be teething?  He lost his two front teeth and they may be coming in.  I have yet to get a good feel of those is like sticking your hands in the mouth of a crocodile...enter at your own risk; plus it induces Brayden's vomiting.  He really could just be teething; increase in pain - increase in seizures; increase in drainage - any mom remembers the drooling mess kids can be when teeth are coming in and Brayden drains into his stomach out his g-tube bag; increase in bad attitude - he is in pain and does not like teething.

Could it be something else?  His pancreas and he is really in pain?  But do we torture him with blood work (and in case you do not remember, blood work for him is torture since we cannot ever find a good vein)?  Do we wait it out?

We are watching.  Checking his blood sugar more often that just once a week.  Checking his urine.  Monitoring those seizures.  If things just worse we know what to do.   For now my mother's intuition is saying it is teething and the blood sugar issue as another medical thing of Brayden's that just does not make sense.

Monday, January 14, 2013

Brayden in NC

Shortly after Christmas we loaded up and headed to Gastonia, North Carolina.  Many of the Johnson family gathered to celebrate my grandfather's 90th birthday (his birthday is really the end of January but this was the best time to get everyone together).
There are many people in the Johnson family...most of whom are loud and hilarious...never a dull moment.

Not sure how Brayden was going to handle a couple of nights in a hotel room, many family gatherings (again, are filled with noise and loud laughter), we loaded up.  Jeremy stayed in VA while my brother and his wife helped me out on the road trip.

A hotel room, two queen beds for the three boys and me.  So Carter and Luke shared a bed while Brayden and I snuggled up in the other.

Brayden had no problem sleeping (perhaps with a little medication help).  I popped up his little travel bed and put it on top of the bed.  Once Brayden discovered I was sleeping next to him, he would kick me and swing his arm around to find...all very cute but not so much in the middle of the night.

To the festivities:
Brayden handled it all with flying colors; quite happy to be around everyone and lots of kids.

A great weekend with the extended family...sharing a hotel room with my three boys was entertaining.  Luke worried about sleep walking, Carter talking in his sleep, Brayden blowing out the room with a 4:30 a.m. dirty diaper and machines beeping all night. Everyone still slept well after having lots of fun.

Friday, January 4, 2013

Tour Continues on Christmas Day

Christmas morning.  Up early, not a problem for Brayden.  We have discovered that he is up very early, waking on most days around 5:00 a.m. (of course to catch a nap later in the morning) so having Carter and Luke ready for Christmas morning at 6:30 a.m. was no problem for Brayden.  Even giving a few smiles and happy noises.
Back to bed for Brayden for medications and his things medical, including a very important power nap.  Then off to Maryland for more Christmas festivities.  For which Brayden slept a lot in his Papa's lap.  Then he would let us know when he needed a quiet room to escape the noise for a while.
And apparently, he had some serious talks with his Great-Grandmother.

Brayden's Christmas Tour - the Eve

Brayden is becoming quite the mature little boy, handling all sorts of situations with flying colors (meltdowns later when trying to get ready for bed).  In years past, Jeremy and I would drive separately to most events...we need a quick get-away car for Brayden.  That way if Brayden flips out, then one of us can leave with him while the others stay and enjoy the event.  This year there was no need for two cars, there were no flip-outs.

Christmas Eve.  Brayden was ready for the fun and chaos.  With lots of cousins running around there is a lot of noise but Brayden was certainly content (and quite handsome, if I do say so myself).

Thursday, January 3, 2013

A good busy

Brayden had a busy Christmas break.  Lots of Christmas celebrations, kids all over the house, time with friends...and even a road trip to North Carolina.  And he handled it all with flying colors...what a stud!

I will be back with all the details...lots of pictures to sort.