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Saturday, May 31, 2014

A Shift in Perspective

What do you see? More possibilities. Does your new view give you more hope? That's the goal. Although it does not always work out that way. Sometimes a shift in perspective just makes you see what you've lost. - Greys Anatomy

Or maybe that shift in perspective just make you see what you have, the positive of a situation.  That does not mean you don't see the negative, trust me the negative is there. I think about the negative a lot, sometimes more then I would like to admit, especially to myself. Our family life is not easy, but we do it. If we had a choice would this be the life we would want for us, for our children, no way. Would Brian and I want to watch our kids suffer every day, watch each other suffer every day...of course not. But we can't change it. We know there is not a day that goes by when someone in our family is heartbroken...if we could wave a wand and make it go away, trust us we would.

We have done many things over the years that I can't believe we have done.  Things most people can't imagine, as the days go on we will continue to do those things-things which have caused a shift in our perspective.  Taking the time to make memories, laughing, smiling...those things among all the other little and big. Watching the boys have boy time. Watching the girls have girl time. Watching the kids have kid time with the knowledge that they really do have a remarkable bond.  Realizing that each day is a day to have a change in perspective, make the most of them, make them count, make the memories.

Sunday, May 18, 2014

The Lonsmen Ride

Today was one of those days to put down in the books. After months of preparation, emails, phone calls and meetings; signals determined...it was here. Thru Tzvi Haber of Chai Lifeline and Mark Lobel of the ,Lonsmen motorcycle club, Ian got a ride. It was not just a ride, it was approximately 20 bikes and one with a side car. It was all about Ian, regardless of how long he could manage...the Lonsmen came out ready to ride. After getting Ian into the side car, along with me (yes for those of you who know me...I rode)...we were off. Brian followed in the van with all the equipment ready to pull over if needed. We made it about 20 minutes and it was time to head back home, Ian had done well...but the wind in his face along with the bumping of trach, he was done. 


Once back at our house, lunch was had by all, conversations had, high fives to Ian...the men smoked cigars and then it was time for the Lonsmen to have their ride...along with Brian. Good-byes were said, more photos taken, more people in our village...the Lonsmen are an amazing group of people who gave of themselves today...for that we will forever be grateful. 


Sunday, May 11, 2014

Happy Mother's Day

11 years ago I celebrated my 1st Mother's Day. For me it was extra special as on Saturday, May 10, 2003 we brought Becca Jordan home from the hospital ... Then the call came early Sunday, May 11, 2003, to come get Ian Alexander. He was ready to come home as well...so my 1st Mother's Day was the 1st day our family of 4 was home...complete. Not knowing what was in store....we just went with it each day. 

Every day is Mother's Day for me....I am grateful for every moment we have with our wonderful kids, while I may not always show it or think I am grateful as the moment is playing out...I know I am. As our days continue and our journey moves forward, I am grateful for each day. 

Happy Mother's Day to all the wonderful mother's in our lives. I have learned from each and everyone of you.

Wednesday, May 7, 2014

Heading Home

Well true to Ian...he has not had any issues since being in the hosptial. No issues means they can't see what is going on and no way to change vent settings. We did try a new medicine for anxiety which Ian did well on. In addition he had a trial yesterday and today of being off the vent for 30 minutes each, he did great both times. Having this knowledge along with the anxiety medicine will allow showers to go smoother, we hope. So now we wait for discharge orders, finish packing him up, and head home ....to treasure yesterday, dream of tomorrow, live for today.

Tuesday, May 6, 2014

Moving Along...Behaving!

So far Ian is behaving, which one would think would be good, however, in order to find out what is going on we want him to misbehave. We want him to desat or to have some issues breathing...true to what happens when you aren't feeling well and finally go to the MD....you are better. So we have been watching lots of movies and TV. I tried to do a Legos with him, but failed, and just got the come on mom look from him. He will get observed again tonight and see what he does....I am sure he will behave. 

Monday, May 5, 2014

PICU

Finally in a room and working on getting settled in with all our stuff from home.

While in the ER, Brian and I were joking about which side of the floor we would be on as we have already been on the left side, in the middle but not on the right side...well who would have thunk it...we are on the right side this time.  Brian and I found it funny...

Sunday, May 4, 2014

Heading to Hopkins

Well Ian has been on and off oxygen for the past few weeks and after many conversations with Ian's team of doctors it was decided his vent settings need to be checked/adjusted. One way to do this is thru a sleep study,  however the next available vent sleep study is not until the middle of July...that is just not going to work. The other way to do this is being admitted, as much as we want to stay out of the hospital this seems to be our best option.

So we are off to the ER for admission to Hopkins for a few days.