Friday, 10 May 2013


We seem to have found a major set back with a constantly growing boy, it would seem as though Braeden's Fundoplication has let go or at least loosened a fair amount.  What does this mean?  Have you ever had a nice case of acid reflux?  B feels this most of his day, not to mention the frequent retching episodes when he is laying down (which is how he spends 90% of his time) because of the back up of stomach contents in his throat.  Of course being Braeden, he's coping with it all (better than his Momma) and just stopping long enough to cry and retch then carry on.  How does this kid do it?  What would cripple most adults to their beds (or at least non-stop whining), makes B miserable at times but still just happy to carry on.  How much one can and does learn from this little Superman!

Getting stronger and more coordinated!  When he gets
tired he just lays down for a bit and plays on his side.

We are trying to slow down his feeds to run over 2 hours and upping his acid reflux meds but the main problem is that two of his feeds are run while he sleeps (or at least is laying down).  We used to have his crib mattress propped up at a 30 degree angle so that he was upright while sleeping but he's moving too much now to have it set like this.  I am really hoping that I won't have to switch him to continuous feeds (small amount of formula running into his tummy 24/7).  I'm not sure how one can have a child on a continuous feed when he's active and rolling all around the floor, not to mention desperate to crawl!

One of his g-tube Nurses told me three times in our conversation today, "Lia, you know what to do if it is too much", but to take him into be admitted seems like a failure on my part right now.  I don't want to have to confine a moving, happy baby to a hospital bed (not that he wouldn't have a wonderful amount of beautiful visitors!).  So we will persevere with trying to keep things under control as best as possible until we get to see Dr.Brindle (Surgeon Extraordinaire) on Thursday to see what she has to say and suggest.  I'm not sure if a repeat surgery is even an option as he already has a small stomach before the Fundo.
My plan for now is to take a lesson from B and just relax and only freak out when it is really necessary.

The awesome things that are happening?

Such L-O-V-E
Ashley (who we lose in less than 2 weeks...) has taught Mr.B to 'high five' but just like the smooches that some of his favourite Nurses taught him, he does it only really for her!  What a turkey!!  He has fallen in love with Ashley almost as much a she has him so we will be certainly teary eyed to see her go! 

Mr.B's abdominal strength is getting to be so awesome!  He's doing crunches while he's on the if we could just figure out these crazy back muscles. 

B is also taking two toys and banging them together (mimicking).  The hilarious thing is that he'll do it and quickly throw the other toy aside as he hates having more than one toy at a time.

Coolest cat on the block!
This child continues to amaze us and make us laugh uproariously each and every day.  We are enjoying our nice warm weather and taking B outside to soak in it as he seemingly loves the outdoors. 

My special guys!
I got to have the most wonderful 'date night' with two of my favourite men in my life and we got to take Ashley as a 'thank you' for all that she's done for us over the past few weeks.  We had to opportunity to go see "Amaluna" by Cirque du Soleil and it was absolutely amazing!  We were gifted the tickets by the Starlight Children's Foundation (they are who you $1 goes to when you donate at the till at Toys R Us, they sponsor/support chronically/critically ill children with life limiting illnesses), and it was so very special for us to attend and have a fun time together through all of the stress (and not to mention a typically grumpier Mommy!).  Although I was going to take B, I opted out as I thought that it is really important to Torin and Rylan to have lasting memories of their time with Mom too.  It was a great deal of fun and we were so blessed when we had our seats so graciously upgraded to be front and centre, certainly some of the BEST seats in the house!!  I think that the boys will remember the experience and I'm so thankful that I could offer it to them at this time (thank you again Starlight).  Although I do have to say, one side effect is that I really realized just how un-flexible I really am!

My Clowns!!

Momma and Ashley clowning around (I love that T took
this and his finger is proof!)

My sweet clown who was not too impressed when Ry
donned the nose on him, we took at least 10 shots
trying to get it on his nose!

Life is certainly not all sunshine in our house but it sure is full of love and laughter!

From Our Home to Yours...

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