Showing posts from September, 2014


Butterflies, what beautiful creatures. They have a unique quality about them, changing from caterpillar to butterfly. I have not thought about them much. 
The other day, our child life specialists, Beth, was at the house working with both kids. There activity for the day was to make a butterfly out of tissue paper and pipe cleaners. Beth always has a reason for her activities, the kids don't get that, but that is one reason she is so good. 
Sometimes, Beth will call me after her visits to fill me in. Which is what she did after this visit because it seemed to have a lot of meaning for Becca.  Beth told Becca that some people view butterflies as a symbol for transitions or soul. I have to say, I hate the fact that my 11 year-old has to have these conversations at all, but I love our team, along with Brian and I are doing everything we can to make sure her transition is as easy as it can be. I decided to look into the meaning behind butterflies ... there are many symbolic meanings ass…

Family Game Night - Brian

WOW two in a row for me, this must be some sort of record.  I will try to keep this short, sweet and to the point.  However, as you will soon understand, there is a need for me to get a little nerdy in this post.  So bear with me.

Its a typical Sunday evening around 7 pm.  Marci and I are taking a few rare minutes to sit in the living room and think about what else may need to get done today.  The kids are in the den watching tv and everything believe it or not is nice and calm.  Suddenly Becca yells to us, 'Can we have a family game night tonight?'  Marci and I say sure and told her to go downstairs to pick out a game.  As soon as she is out of ear shot I say to Marci, 'Wanna take a guess?' Meaning wanna guess what game Becca comes back up with knowing full well which game it is and low and behold we were right.  Becca comes upstairs with Harry Potter clue.  We tell her to go set up the game and within seconds we hear Ian's infamous click to get our attention.  So…

Thanks Lego - Brian

So one day last week I was talking to someone at work who asked about how Ian was doing at home, as well as how Becca was doing since school started.  I updated them with all the current goings on and told them about the new Lego project and I were going to start on very soon.  Yes we added yet another Lego to the collection.  And YES we are still out of room for them all, lol.

Anyway, my coworker suggested that I try to contact Lego letting them know how excited Ian gets when building Legos with me and how much enjoyment he gets out of doing them.  I had never thought of doing that so I went on to their web site and sent an email to their customer service department and PR department.  Less than 24 hours later I received an email response from someone saying how delighted they were that their product brings so much happiness to Ian considering his disabilities and the time it allows him and I to bond together.  They said they were going to send Ian a special package to him directly.

Changes Oh Changes

Brian and I recently met with Ian's Gilchrist MD and social worker in order to update Ian's care. When we first started with Gilchrist our focus for Ian was quality of life. Brian and I have always said we would do what we needed to do in order for our children to be happy. We have always advocated for our children, as children they can't advocate for themselves, especially those with medical complex situations. We have changed his main focus to be comfort and quality of life. 
Ian has been more tired lately, napping at least 2-3 days a week. He prefers to be home, going out has become more challenging for him.  We are starting to learn how to really listen to him and to read thru the lines with what he is saying...he is sad when he is at school and happier at home. Based on that along with the decreased energy and increased fatigue, Ian will be starting Home and Hospital over the next few weeks. I have been in contact with school and an IEP meeting has been schedule to get…

Swallowing Study

VRK1, PCH1A or Spinal Muscular Atrophy with Pontocerebella Hypoplasia... does it really matter what you want to call it, the disease is still a progressive motor neuron one.  Affected are the voluntary muscles used for crawling, walking, head and neck control, and swallowing (SMA) along with an unusually small and underdeveloped cerebellum, which is the part of the brain that coordinates movement. In addition, a region of the brain called the pons also fails to develop properly. The pons help to transmit signals from the cerebellum to the rest of the brain. Ian does not have SMA or PCH, but these two rare diseases are used to describe two clusters of symptoms caused by the alteration VRK1. So knowing all of this monitoring everything is important. We already know the muscles used for crawling, walking, head and neck control have been affected and no longer work. Knowing what we do, means keeping a close eye on the muscles used for swallowong. To monitor this, Ian has had numerous swal…

September 10, 2002 - The Beginning of Our Journey to Parenthood

It is hard to believe that 12 years ago today, our journey began and what a journey it has been. Implantation, bed rest, confirmation of pregnancy, complications, more bed rest, preemies, NICU (2 different hospitals). It is not the journey we thought we would have taken to become parents but it was our journey. Maybe we should have known nothing about the rest of our journey would be the way we envisioned it, just from the way it started. I see all the pictures on Facebook and Instagram from friends sitting at soccer fields, playing catch with their kids, doing all sorts of things, we loved being able to see them and share them with you. There is a part of me that wants to be able to do that, there is part of me that loves what I have. I read about friends going out on dates with their spouses, finding babysitters easily, there is more a part of me that really wishes I have that, but then I take moments like right now when I am sitting on the sofa watching Brian build a Lego with Ian,…


The head counselor from Camp Simcha Special Boys posted this on his Facebook status:
Faith is knowing when to act and when to accept...learning to act on what you should not accept and learn to accept on what you should not act on.
This got me to think about a question so many ask in one way or do you do it? For me/us, it is about taking care of our children. Oh trust me/us it is not how we imagined it to be. Being angry all the time is only going to hurt each other and the kids. We want to give our kids the best we can, making the best memories we can and treasuring each moment. This is our life, it may not be easy all the time...heck most of the time it is not easy, but its our life. It has taken both Brian and I a long time to accept that this is our life and the prognosis of Ian's disease...I never quite looked at it as faith.