Sunday, September 28, 2014

Butterflies

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 associated with the butterfly. Different sites had different meanings.

Symbolic Butterfly Meanings
  • Time
  • Soul
  • Grace
  • Elegance
  • Expansion
  • Lightness
  • Surrender
  • Transition
  • Expression
  • Celebration
  • Resurrection
  • Vulnerability
While working with Becca, Beth explained that sometimes butterflies are considered as the souls of those who have passed away. What a wonderful way to look at it...looking at the whole process as a beautiful thing.

Another meaning...the butterfly symbolizes new life from the old one....this can be looked at in many different ways....for me I choose for this to be the new life we will have once has passed whenever that shall be...helping me to come to terms with our new "normal" at that time. 

When I started this particular blog, I was not sure where I was going with it, part of me is still not sure where I am going with it...but for now it is done....look at our beautiful butterflies. 

Monday, September 22, 2014

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 time to guess again as to what he wants.  Marci's guess is that Ian is going to tell her that he isn't playing.  BINGO, we are two for two so far tonight!

So Marci and I go in to the den so we can always be with Ian and somehow someway we convinced him to play or maybe he said ok Ill play.  Either way doesn't matter, he enjoyed the time playing the game with us.  However, I convinced him to be on mommy's team since its only fair considering him and I always play on the Wii together (Marci isn't very good at it, lol).  Let the game begin. 

OK now for the nerdy part....

If anyone is familiar with the old version of Clue when we were kids then you basically understand how the game is played.  You move around the board going from room to room guessing which character did it, with what object and in what room.  However this game is based on characters and such from the Harry Potter movies.  So we are playing, having a good time and then the wackiness begins.  Becca gets a 'Help Card' Alohamora (allows you to go in to any room whether locked or unlocked).  She is very excited as usual because that's a good card to get in the game.  But mommy and Ian run out of 'Floo Powder' (little chips that represent what in the movie allows people to move from one place to another via a chimney or Floo (nerdy I know) as its called in the movie.  So I start talking in weird voices saying mommy can trade Becca for her Alohamora card and the cost is Ian.  Well Ian is screaming no, Becca is screaming no way no deal, mommy is saying that's a great idea and I'm being the "auctioneer."  So finally that's settled, no sale.  Oh well. 

As the game continues and we are all having a good family time together mommy and Ian enter a location called the Shrieking Shack.  Again if you have seen the movies its from the movie.  Now being the clown that I am, especially with my kids at times, as soon as someone says Shrieking I let out this blood curdling shriek.  I catch everyone off guard and we all start to laugh.  So, as you can imagine, for the rest of the game any time anyone mentions that location we all Shriek and yes it was loud.  Good thing the windows weren't open.  By the time the game was over and we were cleaning up Becca was saying something but wouldn't mention that location.  She would say something like 'When I went in to that you know Shack...'

It was a great way to end a nice good weekend with the family.  These are the kinds of memories Marci and I strive to build each and every day with out family of four for as long as we can.  I urge everyone to do the same.  Don't complain about how much running around you have to do.  Taking care of this or that in the house or outside the house.  At the end of what is probably a long busy weekend, spend the time together playing a game, without the tv on or whatever.  I'm certainly not saying Marci and I are perfect and we spend all our Sunday evenings like this, very rare actually.  But I want to try to do it more often if we really can.  If we can do it, you all can certainly do it.

Love you family, thanks for a great family game night!!!

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.

Well today we received said package and it was great to see they actually took the time to not only reply to my email but to take the time to send something to him personally.  It wasn't anything big or extravagant but that's ok, it didn't need to be.  They sent him a personally signed Lego Star Wars Clone Wars poster, as you can see in the picture below.  They also included a couple of Lego Movie stickers. 

 

Of course Ian had a huge smile on his face when we showed him the poster, you just cant see it here because we were taking picture after picture to try to get one that was good enough. 

So just wanted to give a big thank you to Lego again for taking the time to send my son this personalized poster and for taking the time to acknowledge my email.  As the poster says, Keep On Building, which we most certainly will do.

Friday, September 19, 2014

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 this change in place along with his team being able to update his IEP goals. Currently they are education based and we want to them to be more fun with some educational component to it. After all, why shouldn't he be able to have as much fun as he wants. 

The Gilchrist child life specialists has been working with Ian to find out what some of his wishes are regarding his wants, needs and his care. He was able to share with us that he does still want to go to the hospital when he gets sick as long as they are going to be able to make him feel better. Thru the wonderful work the child life specialist does she was able to get Ian to express that he does not want to die at home. He wants to be either in the hospital or some place else. 

Over the past year, Ian's scoliosis has increased to over 70 degrees. We have had many conversations with many different people, professionals and non-professionals, regarding surgery. We have seen 2 different specialists who each recommend different procedures, one would do a growth rod procedure which would require addition surgeries easy year, the other would do a spinal fusion. We have decided, if we do surgery, we will go to DuPont to have the spinal fusion done. We know there are risks with doing the surgery as well as if we don't do it. Ian's back pain has increased...which we hope would be reduced with surgery. We have been in contact with DuPont and they are already scheduling into January...we know we don't want to effectively put him in the hospital at that time of year so we are looking at sometime early spring to schedule (in case we decide to do it). This gives us time to explore non-invasive options, such as getting an in-home PT evaluation done to help with positioning in bed and in his chair, as well as pain control. 

So there have been changes oh changes....treasure, dream, live.

Tuesday, September 16, 2014

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 swallowing studies over the years, with the last one over a year ago. We decided it was time to check it out...so today was the day.

We were presently surprised it went well, everything went down smoothly and quickly as it should. They did not see any signs of muscle weakness based on how the food was traveling or any signs of aspiration. As long as we don't see anything concerning we are good for a year. Ian gets to continue eating and drinking by mouth ...woo hoo.

Wednesday, September 10, 2014

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, knowing the wonderful bonding moment they are having. Sitting here, part of me is thinking about where our journey started and the road we have taken to get where we are and where we will be one day. When we started and found out we were expecting twins, I never thought my family of four would one day become a family of three...not the way we one day will..so for now I will continue to see all the photos and status updates of friends, all the while continuing my families journey and treasuring it each and every day.

Monday, September 1, 2014

FAITH

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 another....how 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.