To Plan or Not To Plan

The “spur-of-the-moment” gene did not get passed along to me, or anyone else in my family.  I am definitely a Type A kind of gal.  When it comes to holidays, vacations, and family dinners I love to make plans months in advance so it will be a memorable event.  Anticipation of what is to come makes me very happy.  But when you have a child with severe hemophilia and inhibitors, you realize that planning is often fruitless...

To read the rest of this post, visit http://www.hemophiliafed.org/news-stories/2014/01/plan-plan/

VICTORY!

 

My mighty "Christian" has a debilitating fear of needles.  Because of this fear and the fact that he needs daily infusions, we access his port once a week and leave it accessed.  Due to the physical and emotional stress and trauma accessing causes, my husband and I have recently started to take him in to the HTC once a week to for his access.  We had finally raised the white flag and said that we just could not do it anymore at home.

Sunday night is our typical accessing time.  We had been talking to Christian about working on his breathing so that we might try to access at home instead of going to the HTC this week.

He did it!!  He laid down, breathed and breathed like crazy and we accessed without holding him down!  When my husband said "We are in!" my sweet boy started crying because he was so happy and proud.

I have no idea what next Sunday night will bring but what I do know is that we had a huge victory tonight.

Hope is a good thing and sometimes, when you least expect it, some great things happen that let you know that everything will be okay.

Birthday's

 

Having a good attitude and tons of hope to start the New Year is a good thing.  And then it happens…."Mom, my knee hurts."  Ugh.  On the evening of the 16th I knew that the pain was about to get out of control so I took "Christian" to the hospital where he was admitted.  Fortunately he did not have to use a morphine pump but did get numerous doses of morphine IV.  I was glad I listened to my instincts and took him in...we seemed to get a little ahead of the bleed.

But the yucky part was that he had to spend his 8th birthday in the hospital :(  Halloween, Christmas and now his birthday!  Really?  I was going to make sure we all celebrated regardless of our physical location.

 

You know, it was a pretty great day :)  Presents, balloons, singing and cupcakes.  Everyone on the floor made sure he felt extra special that day and I am so grateful for the amazing nurses, techs, child life specialists and doctors on the 6th floor at the University of New Mexico Children's Hospital.  They are pretty amazing.

Celebrations need to happen.  Hospital or no hospital.  Bleed or no bleed.  Keeping life as normal as possible is a necessity.  Life keeps moving and I am going to make sure my son does not miss out and that he knows he is loved.

The Best is Yet to Come

Despite spending the week of Christmas in the hospital, it was a great holiday!  When you are forced to be in a single room without being able to hibernate in separate parts of your home, it's pretty nice even with monitors buzzing and nurses coming in constantly.

October 18th was the last day my "Christian" walked.  He is now able to use the walker but his knee is still bent.  We went to the HTC in Denver for a good follow up after all of the bleeds he has had since October and we will be going back in February.

Several vials of blood have been sent to the CDC for some in depth studies.  Once the results are back we will go back to Denver to meet with the HTC and allergist at National Jewish to devise a plan of attack.

His port has a pretty serious fibrin sheath around the base so we are not able to draw back for blood work...just push with factor.  We are hoping it will hold out a bit longer and are even considering a Broviac due to Christian's extreme needle phobia.  When we have to move forward with a new port/Broviac, we have already decided that it will be in Denver.

Chronic illness never stops.  But when you have the moments of eating dinner as a family at home, sleeping in your own bed, and being as "normal" as possible for a bit you are able to get re-energized and fueled up for whatever life will throw at you next.

 

Going to Denver for appointments was not how we wanted to spend the last few days of 2013, but we were able to have some fun, spend time together and look forward to the year to come.

 

I am looking forward to 2014.

 

To finding answers…

Experiencing results…

And living a life filled with passion, purpose and love.

 

And most importantly to helping my sons live empowered, fulfilling lives.