Horses!

Ambrose recently made two new friends: Jeremiah and Modock.  These are horses owned

by my friend Janie.  He got to pet them and feed them carrots.  Next time he will try sitting on them and maybe riding a little.  It was very exciting.

Ambrose turns SIX!!!!!!

 

On January 19, 2014, darling Ambrose turned 6 years old!!!!!!
We are overjoyed and extremely blessed that our little boy has made it this far and is still going strong!
James and I were both sick on his birthday and had to reschedule his birthday party.  His actual birthday was a pretty quiet affair, with us wearing masks to try to protect him.  It worked!  Amazingly Ambrose stayed well throughout our illnesses and his full day of hospital appointments a couple of days later.  He wore a mask that day.
His rescheduled party was yesterday and a great time was had by all.  Ambrose has a wonderful group of ladies who love him so much and have been great friends to us!
Charla Reardon was joined by my dear friend Jillian Starr in creating facebook pages to encourage people to send birthday cards to Ambrose.  We were so blessed and received 88 cards.  The most ever.  Our favorites are always the cards handmade by children.

Some of the wonderful handmade cards.

SPOOKY

The above photo represents a very scary and discouraging issue.   For the past 2 plus years, DHMC has been without a pediatric orthopedic surgeon.  Ambrose had been seeing the previous Dr annually, keeping tabs on his scoleosis and his multiple skeletal issues.  For the past couple of years I have been increasingly concerned that his curve seems to be getting worse.  None of his various specialists paid much attention.  However, recently, after ruling out other culprits, his pulmonologist  felt that his scoleosis may be the cause of his worsening respiratory issues.  When I heard they had finally found a new Ortho Dr., I was very excited for him to finally be seen. I was hopeful that he could perhaps try some kind of brace, but concerned that might restrict his lungs further.  
Well, I was very upset to learn that Ambrose's scoleosis is now measured at 90 degrees and considered severe and beyond repair.  A brace would not be an option for him because of his respiratory compromise and also he is beyond what the brace could do.  I already knew that I did not want to persue spinal surgery as I had been told by a PICU attending that he would never recommend it as he had seen kids like Ambrose do very poorly after such surgeries.  I also learned that it is highly unusual for someone as young and small as he is to have developed such severe scoleosis and that the hardware they use in these surgeries is actually to big for him.  So I was told "surgery isn't even an option."
His right lung (seen on the left above as image is reversed) is very squished.  His ribcage is twisted and sticks out in the back on his right side.  I asked the Dr to look back in the computer to compare it to an older image.  She found a chest xray from 3 years ago and measured the curve at 40 degrees.  So in the 3 years that no Dr was watching, his curve went from 40 to 90 degrees and is now "beyond repair."  It cannot be allowed to get any worse!!!  The only thing that this Dr. suggested was having a custom molded seat back made to prevent him from   curving any more than he already does when he is up against gravity.  We are looking into this now.   I am optimistic.

OK so I cheated a bit on Ambrose' Halloween costume.  I made this gnome costume a couple of years ago for him and he looked so darn cute in it.  Since his new diagnosis last year, following his whole exome study, I have wanted to modify this costume and make him : a  HUMAN GENOME
(G-gnome)

Of course he doesn't have a devilish bone in his body, but I couldn't resist.  He looks so darn cute!

JOY!

When I look into these eyes, my heart is filled with joy.  These are Ambrose's "big eyes".  Often we only see them for short periods of time, but this weekend we have seen them for hours at a time. 

Ambrose is often awake with his eyes closed or rolled back for long stretches of time.  When he has his "big eyes on" he is much more attentive to the world around him.  

                                                   He has been engaging and smiling alot.

This past weekend, we were special guests at a Make a Wish fundraising dinner.  I was asked to speak about what Make a Wish has meant to us.  I am too shy to speak in front of a room full of people.  My husband spoke and did a great job.  I agonized about my decision to bring Ambrose.  I know it would be meaningful for people to see this "wish kid", but I worry so much about exposing him to germs.
It turned out to be a great night which Ambrose really enjoyed.

They had asked if it was OK having Ambrose sit at the front table.  They wondered if it would be too loud for him.  I thought it would be fine since he is hearing impaired.  It turned out to be perfect.  He loved listening to the music and especially the Karaoke.  They had strings of lights up that he could see.

Our friend Winnie came.  She loves Ambrose and Ambrose loves her too.  Our boy had those big eyes on the whole night.  We were there almost 3 hours.  I can't recall the last time I saw him engaged with something for so long.  Words really can't express how much it fills my heart with joy to see him like this.

Ambrose had a great summer.  He had many adventures.  Grandma and Grandpa visited.  He went camping (luxury camping).  We stayed in the Director's cabin at Green Mountain Camp.  He went to the Wellness in Windham festival where he got his face painted.  

He made several paintings which were were auctioned off to raise money for his father's Mission trip to Kenya this fall.  He went for many walks, lost more teeth and got new ones, and had several doctor's appointments, of course.  

We have tried a variety of different respiratory medications.  We are currently doing chest PT am and pm followed by Advair.  He does seem to be having fewer episodes of desaturations and is using a bit less O2 overall.  We are also trialing him off of Synthroid.  

Ambrose is the light of our lives and has been his usual wonderful, snuggly, loving self and we are so grateful for every moment with him!

Kindergarten

Dear sweet Ambrose is now a kindergartener!  He is technically a part of the Academy School, but is home schooled.  We have instituted a new schedule of developmental activities to work into his day.  He also has a daily "report card" (sticker chart) and receives many rewards.  He has an A+!  He has just been wonderful as he always is.  He puts up with it all and participates (sometimes passively).  It is very exciting for him to have reached this milestone!

Well Darling Ambrose is having a good Spring, yet keeping us on our toes as usual.  He has been having frequent sudden desats following position changes, that require bagging and xopenex (an inhaled bronchodilator like albuterol.)   Fortunately, they resolve quickly.   The sudden onset and postional nature makes them appear like obstruction (Ambrose has a history of this which resolved once the correct angled custom trach was created) but the fact that it is resolved by Xopenex sounds like bronchospasm.  To add another layer ontop of it, we have had the windows open and taken him outside alot during this period, which happens to be peak allergy season.  Could it be allergy related?

We are now trying a twice daily inhaled steroid called Flovent.  It will take a while before we see if it helps.  I have also been trying to keep the windows closed and keep Ambrose inside.  We have installed the AC since it has been muggy.

 Ambrose and the children of the Dummerston Congregational Church with the tree they planted.

Ambrose sound asleep, playing his switch activated bongos.  Sorry the video doesn't seem to work.

Ambrose's nurse helped him create this reversible masterpiece with his fingers and feet for Mother's Day.

Another video that doesn't want to play, but won't let me delete it.  It shows Ambrose in is stander playing other LOUD switch activated instruments and he is totally unimpressed.

Ambrose also lost his first molar.  It was not the loose one I've been watching for months, but a total surprise.  I saw it on the back of his tongue after having brushed his bottom teeth and flicked it out of his mouth before he was able to swallow it.  Yikes!  He has now lost 12 teeth.  Only 2 are unaccounted for and most have grown back.  Unfortunately the sharp spikey ones that cut his tongue came back the same way.  In fact, his tongue is crooked, with a deep groove in one side from these teeth carving into it.  A couple of years ago we had a dentist file the two front bottom teeth.  It was quite a scary ordeal for him and he wound up getting his lip cut as he was trying to get away from the drill.  It did stop the daily assault on his little tongue though.  Sometimes it's not easy being Brosie.  But the continuous hugs, kisses, and cuddles help.