Struggling

My mighty warrior "Christian" is amazing.  He manages to be happy despite not being able to walk, despite missing so many days of school and even despite spending day after day in the hospital because of his bad knee.

His right knee started becoming a problem in January 2013 and here we are in the hospital again.  Again and again and he's not even walking.  It is so frustrating.  I sound selfish but the fact is that living with a severe bleeding disorder with an inhibitor is extremely difficult on the entire family. 

You try to keep a stiff upper lip and manage to tell people "It's okay, he's a tough boy, we are okay, we do what we have to do," etc. etc.  But honestly, I am exhausted.  Exhausted to the point that I don't know if I want to scream or cry or just crawl under the covers. 

One of the most trying parts of Christian's condition is that his treatment is being managed by a team out of state and getting that team to talk to our in state team and actively get on the same page is difficult.  They work well together, but right now we are running circles and always treating a bleed in a crisis management mode.  We need more and I think this hospitalization has opened the eyes of some of the clinicians working with us.  Finally.

With my oldest son hemophilia was a breeze.  I always wondered what the fuss was about.  I didn't understand target joints, pain and why some of the younger generation needed wheelchairs and walkers. 

 

For everything my "Lance" did not go through Christian is experiencing ten fold. 

I would love to see him run but walking on both legs without a walker would be amazing.

 

To see him walk up and down the stairs on his own instead of scooting on his bottom from step to step would be a victory.

 

And to watch him walking on his own without the stares a wheelchair brings would make my heart burst with joy and gratitude.

 

The time will come. 

 

I have hope and I'm not giving up.  I'm his Mom and I will do anything and everything possible to help him get to a better place!  I just have to look into his eyes, snuggle up with him at night and feel his breath on my face to remember that the pain will pass and the moments of joy and happiness we have far outweigh the painful moments of living with hemophilia.

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.