Wednesday, March 5, 2014

One Day at a Time

We had a great time Friday celebrating Mason and Riley turning 2!  We were able to take Mason to lunch at our favorite mexican restaurant on Friday and he enjoyed every minute of his one on one time with mommy and daddy.

Riley had a great day as well and even got the day off from therapy since the weather was so crazy! We ended the day with pizza and cake with the grandparents.
Hi Pa Doug
Riley even tried some frosting :)

The official birthday party is this weekend and I have never been so happy that we chose this weekend over last as it was rainy and cold and we probably would've had to cancel!  We also started to notice that our windows were leaking and it was creating quite the mess with all the rain we had.  Now that we've dried out a bit and we're expecting 80 degree weather n Saturday we're hopeful that everything will go as planned.
Hi sissy want to play with the puppy?

Monday I took Mason to the pediatrician for his 2 year old check up.  He'll be starting "school" tomorrow (2 yr old preschool 2 days a week) and we needed him to have his check up before he started.  The appointment didn't go as well as I expected and I am still trying my hardest to not think about the what ifs.
Dr. Mason

 Mason has a heart murmur.  The pediatrician noticed it at his 18 month appointment but, wasn't overly concerned.  Well on Monday it was more noticeable and so she's referring us to a cardiologist.  These two are going to turn my whole head of hair grey!  The good news is Mason is thriving.  He's 35 inches tall and 29 pounds.  He's hitting his milestones and doing everything he should be doing at 2.  So while all signs point to this being insignificant it still leaves me unsettled.  We'll see a cardiologist in the next month or so.

Last week Riley also had another appointment with her audiologist.  She's doing really well with her implant and had definite reactions while the audiologist was testing the channels in Riley's implant.  We go back again in April and at some point in the next few months they will have Riley back in the sound booth to see what type of response Riley exhibits now versus before the implant.  Remember Riley isn't hearing like you and I do so much of what she's doing now day to day is helping to train her "ear" to hear certain sounds and identify with them.  We've been encouraged to use baby talk around her and repeat things over and over in a sing song fashion.  Similar to the natural actions you'd have around a newborn baby cooing and what not.  We're still amazed with the difference in Riley's face while she has the implant on.  We know she appreciates being able to hear sounds even though I am sure there are times she's like to tune us all out.
With all of her babies!

We also met with Riley's ENT doctor last week and have a tentative plan in place for removal of the granuloma.  She's scheduled for surgery at the end of March (we may push it back one more week just so we're out of the official Flu season).  When the doctor gets in to the OR and if he is able to remove the granuloma without opening up Riley's stoma site it should be an easy procedure.  If he is still unable to get to the granuloma like last time and needs to open up the stoma site it will be similar to the surgery when Riley's trach was initially placed and may get Riley a ticket to being inpatient for a few days.  Because of this possibility we are trying, as best we can, to plan around flu season.  Once this procedure is done we can begin to work on other therapies.  Feeding, swallowing etc.  Until the day that Riley is dencannulated (and yes I do believe that one day in the future she will be) the granuloma has the possibility of growing back.  It's the nature of the beast as the trach is a foreign object that Riley's body is trying to expel and with that comes the scar tissue.
Sleepy baby in her new jammies from Grandad and Grandma.

Sometime in the next couple of weeks Riley will have another round of Botox and hopefully the stander we ordered will be here next week so we can start to use that again with Riley.

In the meantime we're busy with life in general and trying to just take things one day at a time.  Mason's diagnosis hit me hard.  Even though we knew about this 6 months ago I put it in the back of my mind because until it was time to worry I really didn't have the emotional energy to add it to my list of anxiety producers.  For now I will continue to look at the patient (Mason) and remind myself that he looks good, is doing well and is growing as he should.  Hopefully this will just be a blip in Mason's year and it will turn out to be insignificant.  If not... well there is not a "if not" right now in my mind.

Fight On!

Dave, Megan, Logan, Mason & Courageous Riley

1 comment:

  1. Oh, Megan, I am so sorry about Mason's diagnosis. One more brick in the load. I will worry for you. Love to Riley and the boys, Cindy