Thursday, April 10, 2014

Leveling Out

Since Tuesday night, Ian has leveled out, Tuesday evening around 6:00, we were able get Ian off of the oxygen. He has not had to go back on since then, had a few good nights sleep as well as gone to school Wednesday and this morning. We are hoping last weekend and the beginning of the week were just bumps in the road but we are fully expecting to have more bumps in the road as we continue to navigate VRK1. At some point in time adjustments to Ian's vent settings may need to take place as well as he may need oxygen more often then not and this can happen at any point and time. But for now we will continue to take what we can get...

The new pain medicine Ian is on has been making a difference in how he is feeling, in fact I spoke with his Gilchrist nurse earlier today and Ian told her yesterday that he was not in any pain as well as one of his day shift nurses said that there is a big improvement in how many times Ian needs to be readjusted. Again, we know that over time the pain medicine may not work as well as it is, but we will continue to take what we can get...

Both kids brought home wonderful 3rd quarter report proud of both of them and all the hard work they do at school along with all the other challenges we have which are not a part of other pre-teens lives....

Continue to treasure yesterday, dream of tomorrow but live for today.

Tuesday, April 8, 2014

Rough Nights - Possible "New" Normal

The last few nights have been rough for Ian...well for the most part he is sleeping through them ... his saturation levels have dropped below what doctors as well as us are comfortable with...his levels should not go below 92-90, once this happens for about 10 minutes it is time to bring out the oxygen. Well the past 3 nights, Ian has decided to play let my numbers drop...oxygen sounds like a good thing. In the past when this has happened, he has only needed the oxygen while he was sleeping and then it is back to room air. It has not been that easy to get him off of the oxygen this past 3 days. We are looking at lunchtime before getting him off, actually today he was off for about 30 minutes, after some suctioning, he decided to drop into the mid-80's. So back on to oxygen it was. In addition, we have added a new pain medicine into Ian cocktail of meds...when asked if it is helping he will say some but it could do better. So we are continuing to increase it in order to get to a therapeutic dose. 

Last night Becca told me she was worried because Ian needed oxygen more recently. I told her we all were worried and that we were going to just continue to work through it hoping that it did not become our new normal but there is a chance it could be. Today after school, I asked her how her day was, she said okay. I asked how Ian was, she said okay but mommy he is still on the oxygen. I said I know...he was off for a little bit today but needed it again. I checked in with her to see if she has told any of her friends about the hard time he is having, she said no, if it becomes our new normal then I will but I am hoping that he is just going through a difficult time right now....

Us too baby girl, us too....

Monday, April 7, 2014

New or Old SMA Family....

B4SMA Ptions recently published another video. This one is earmarked for newly diagnosed families. It was a beautiful video, the words stuck me....this hits home regardless of being a newly diagnosed family or an "old" diagnosed family....

Yesterday, we received a note from a new mom and dad
“Our baby was just diagnosed,
With sma
We are scared.
What kind of life will our child have?
Today we reply to them like this:
Dear new parents,
Don’t be afraid.
Your child
Will be able to do many things
They’ll be able to jug you.
They’ll be able to play with you.
They’ll be able to speak
Someday in their own way.
They’ll be able to tell you just how much they love you,
They will be able to go to school
Like everybody.
They will be able to learn to read
And they will be able to tell you their own stories.
If someday they are far away,
Because, indeed,
They will be able to travel too.
They’ll return with memories of their own
They’’’ be able to help their father
Fix his hotrod.
They will be able to work.
They will have best friends
They’ll fall in love
And have a family of their own.
You will have to make difficult decisions,
Decisions no parent should ever have to make.
Sometimes it will be difficult
Very difficult
Almost impossible
But isn’t it like that for all parents?
Dear parents,
Your child can be happy,
Just like I am.
And you’ll be happy too.
Right mom?
Right dad?
People with SMA can live happy lives.
Together anything is possible.
Everyone deserves to be happy.

Wednesday, March 26, 2014


A wonderful article by our wonderful Child Life Specialists....Beth....we are grateful she is a part of our village along with the staff at Gilchrist....thank you.

This month we celebrate social workers and child life specialists. With children and in palliative care, there is some overlap in the goal to provide psychosocial support. Our goals are similar, but our methods are different. Children communicate through play, they show their understanding of ideas, fears, joys, and so much more in how they play. As a child life specialist, my hope is to meet them in their space, join them in their internal adventures, be the playmate, the interpreter, and the guide that they often need. This child can’t move, so he creates a fantasy around him in which he has power, can defeat the pirates, be friends with dragons, fly like a superhero, explore death through burying other characters, and act in roles any ten year old would love. With our children, I can be silly, serious, crazy, firm, and fun. I listen to their fears, teach them about their bodies, create play when they physically can’t themselves, and most importantly, empower them to be like Katie Perry’s Champion. I encourage them to Roar, sometimes literally.
A child life specialist is not a social worker. We don’t provide counseling to parents, or coordinate with government agencies. We use our education in child development, communication and play to provide support to children in their own language, gauging what needs may be, from information, to companionship, play, sibling support. We advocate, we communicate, we interpret.
To quote a poem:
“I am deliberate in all my actions and words, because I use the language of children, and it has power. I’m a Child Life Specialist. When kids say the can’t, I tell them they can. I am a teacher, a helping hand, a support, an advocate, an active listener, a therapeutic touch, and a child development specialist. A guide and voice for siblings…All in the same day.”
Our rocket ship driving, pirate defeating captain turns and says ‘I need suctioning.’ Nursing steps in, clears the blockage, and two of us return to beating the imaginary, and symbolic demons of his world.
Families often question what their children know, what should they tell their children. They wish for as many positive memories to create, and hope their child can be happy and fulfilled even at their worst. A child life specialist helps families create those memories through songs, visits, making keepsakes, opening courageous conversations, reframing appropriate information into understandable bites, and helping parents see how strong their kids are. We model play styles, provide special time with siblings, and show parents their own strengths as well.

Monday, March 24, 2014

The Ugly and The Beautiful

Most of my posts are updates on Ian and our family but I have not really gotten down to the ugly part of VRK1 or having a child with a life-threatening illness...there are so many ugly parts about it but I also want to point out there are many beautiful parts of it. 

Over the past years, we have gone through many changes as Ian has gone through many changes. We have gone from a family of four who went out with friends to restaurants, to each other homes for "play dates"...pick up your kids and just easy as 1, 2, 3 in the car and out the door. As disease progression became more apparent (and we had no idea what was going on) we were still able to go out and do; even a wheelchair did not stop us. We went. Oh how the times have changed, it is not as easy as 1, 2, 3 in the car and out the door any more. Some of it is that Ian does not like to go out, he prefers to be home; now we barely go out, when we do it is rarely as a family of four...most of the time friends think we are "too busy" to do anything...not realizing we are home watching TV with Ian, having a family movie night or game night....we could and love to do that with friends as well. You hear of friends celebrating each other B'Nei Mitzvahs, going out on dates with their significant others, going to family events with each are jealous, lonely....we feel guilty, jealous, lonely....we have learned this does not make us bad people, parents, or significant others - it just makes us human. It makes us realize the ugly parts of VRK1...what it has robbed us of, what it will continue to rob us of. But it makes us realize the beautiful part of VRK1...the people who have come into our lives who would not have if it weren't for VRK1, the things we have been able to do because of VRK1, advocating for rare diseases, the closeness it has brought to our family. 

Thinking back to when we first got together, 19 years ago, who would have thought we would be here...thinking back to when we were in college and friends, what we imagined of our lives (regardless of who they were with), married, kids, spending time with our family, friends, celebrating, ...all the things people do...couldn't have imagined our lives now. When I got pregnant, found out we were having twins...we never thought...but wouldn't change it. A lot of times you hear people say...all I want is a healthy baby...well what are you going to do if you don't get a healthy baby...regardless of your baby/child. Yes, it's hard, no it's not hard, yes it's lonely, no it's not lonely, yes we worry about Ian, no we don't worry about Ian, yes we worry about Becca, no we don't worry about Becca, yes we worry about each other, no we don't worry about each other...are we making the right decisions...I know these are things everyone thinks about...but ours is double, triple...still part of me would not change it, part of me would...that only makes me human.

Thank you to everyone who is in our village, who has helped to make the double and triple a little better. There are many people who have come into our village who we never would have met with out the ugly part of help make it the beautiful part of VRK1. 

As I was finishing up this, I received an email from Ian's teacher as they were working on anti-bulling this week. They used Ian as an example and this is what they has to say about him....

Wednesday, March 19, 2014


Whether you had a small gathering or large public event, raised $1 or $1,000, or handed out 1 ribbon or 1,000 ribbons, EVERY effort counts and does make an impact.  That is what World Rare Disease Day is about!

Highlighted Events for 2014 include:
  • Our Blue Denim Genes Ribbons Created Hope All Over the World: This year, more than 120,000 ribbons were distributed all over the United States, Europe, Australia, and Africa.
  • ​Thousands of Global Genes Facebook and Twitter friends showed they "Care About Rare" with our customizable social media profile pictures. It was to inspiring to see so many beautiful rare faces all over the internet sharing why rare disease awareness was so important to them!
  • Rare Events on Capitol Hill: Over 150 rare disease advocates from all over the US congregated in Washington, DC, to share their stories and concerns to their senators and congressmen. Advocates attended the Rare Disease Caucus briefing inside the Capitol as well as joined the Global Genes team for a great night of networking at the Darlington House.
  • Worldwide Reach: We catalyzed many events across the nation and around the global including school-wide programs, business offices, and community events.
Although World Rare Disease Day is over, the need for awareness, research, and support continues. Let's keep the enthusiasm going and continue to encourage the world to CARE ABOUT RARE each and every day!

If you want ideas or support for continuing this important mission, please reach out to our Global Genes team.  We are here to help!

Again, thank you for joining us this year on World Rare Disease Day to build universal awareness and support for the RARE community. We know that the impact of our collective voice would not be as successful without you!

Saturday, March 15, 2014

Weekend of Fun

This weekend started off with us going to Medieval Times, complements Casey Cares Organization...we had a wonderful time. The kids loved seeing the horses and the fighting. The bird flying around the arena was incredible, the training that goes into all the animals.  Of course we were on the BLUE team, no he did not win...but that is okay, we loved watching him. Becca was lucky enough to get a flower from the blue night and she was thrilled. The staff at Medieval Times helped us in any way they could so our experience was wonderful. Seeing the kids faces while everything was going on along with beg able to share the experience with my parents was great. At the end of the evening, the kids wanted to meet the knights and have their pictures taken with them...
Saturday was Girl Scout Shabbat and Becca and I want to Chizuk Amuno to celebrate. We have not been to synagogue in a long time and it was nice to be able to experience it with her. Later that day Brian took Becca and a friend to the being able to give her some special time. Ian and I stayed home and watched a movie on TV. During our time watching the movie, I told Ian that he was being a pain in my tuchas (TOO-khas)...he looked at me and said that sounds like a made up word. Made up word, no Ian it is a Yiddish word which for buttocks. 
Sunday it was time to go to Turkey Hill Experience with Girl Scouts. The morning started off well. As the drive there was good as well. We were starting our experience and Ian started having some breathing issues. His saturation levels did not drop but he was tugging and needing lots of suctioning. We got some stuff out but there was more we were not getting. We decided to put him on some oxygen and head home. Becca stayed with her Girl Scout friends and enjoyed the rest of the experience with them. Once home we got Ian situated on his home ventilator and humidification system and he's doing fine.

 The drive home for me brought out some emotions. Made me realize more and more just how much I HATE VRK1....FU VRK1. Just one more thing we had to miss out on sharing as a family because of more thing we could not spend time with Becca during because of more thing. We try so hard to be "normal" regardless of what that is, but VRK1 can have other plans for us...having to except that stinks (I would like to use other words but won't). We try so hard to not let reality get to us, to not dwell on the reality but on some days, some moments, it just not matter, VRK1 is right there in our face saying ha, ha...well today was one of those days when I let it win for a little I am done letting it win for the rest of the day and I am saying FU VRK1, we are going to enjoy the little bit of weekend we have left.

Remember....TREASURE yesterday, DREAM of tomorrow, LIVE today.