Caller ID

Remember when caller id was futuristic?  I remember thinking how cool it would be if you could see who was calling before you picked up the receiver and if I would ever be in a world where you could make a phone call and see the person while you spoke (Skype). 

Being able to see who is calling is the norm these days.  If I don't recognize the number 9 out of 10 times I will choose not to answer the phone.  And sometimes if I do know who is calling I still won't answer the phone :)  But some numbers make my heart race. 

When I see a certain "891" exchange, I know it is the elementary school.  I have a great relationship not just with "Christian's" teacher, but with the ladies in the front office and the clinic.  They all know that if they are in doubt about whether or not to give me a call regarding Christian that I would prefer them to call.  I would rather drop in to the clinic, check him out, infuse if necessary and send him back to class.

Fortunately I have a job that allows me the flexibility to run to the school when I need to.  My husband too.  Between the both of us we are able to check on Christian regularly and this has empowered the staff at his school to feel good about his care.

This week has been a crazy week in going back and forth to the school to check on Christian and give extra infusions.  We do what we have to so that he can stay in school.  We have a half day to go before he becomes a "big second grader" :)

You never know when that phone call is going to be a "little" something that you can treat with factor and a hug and a kiss, or if it is a "big" something that will change your entire day (or week) by needing to go to the treatment center or the hospital.

I hope that as school ends and summer approaches that we all get a little break from the running back and forth and get a chance to breathe.  The new school year will be here before you know it! 

Kites and Play Days

"Christian" finally made it to a field trip!  His class went to a local park to fly kites and have a picnic and he didn't have any issues.  I am so glad he made this trip since he missed the previous three.  The great thing about seven year olds is that they don't dwell too much on the past, they are into the "here and now."

But now I have to weigh whether or not Christian should attend "play day" tomorrow.  Bouncy house (yikes) and games.  His ankle is swollen and even if I send him in the wheelchair, I think it would not be in his best interest.

He misses another day and another event, but the beauty is that he is looking forward to Daddy being home from his trip and going to a birthday party this weekend.

I love my son's spirit.  He is resilient, tough as nails, and the sweetest, funniest kid you would ever meet.

It's been a heck of a journey with him, and I can't hardly wait to see what the future holds for him.  It's going to be pretty wonderful :)

The Playground

Last week I went to "Christian's" Spring BBQ at the elementary (where 1st graders eat lunch at 10:45 am) :)  I sat with him and his friends and enjoyed some great conversation followed by the playground.

The doors from the cafeteria opened and the kids raced off to the jungle gym and the ball courts.  But something was not able to happen...Christian could not run with them.  Even if he had not been in the wheelchair, he would not be able to keep up.  It took my breath away for a moment.  My son was not able to run and climb and enjoy his classmates.  I started to feel really sad and then Christian says "Come on Mom, let's go around the track!"  He excitedly takes me around the perimeter of the playground (his very familiar route) and keeping up with him was not as easy as I expected.

Something beautiful happened during that recess time.  Occasionally a friend of his would find him on the track and walk and talk with him.  Two really cute little girls came up and said "let's race", as they walked quickly beside him.  And then a little boy came up to him and started "dodging" him making Christian turn his wheelchair around in circles to find him...it was like hide and go seek :)

Those children included my son and expressed a love only a child can express to one another. 

The wheelchair was not in the way, they saw past it.  He was just their friend.

My eyes were opened that morning.  I have a deeper appreciation for what my little one has to accept. 

I will be with him every step of the way.

Embracing

Our family had a great vacation to Colorado.  My "Christian" did not have any bleeds, just a horrible cough, "Lance" had no issues and the most exciting part of the trip was that blizzard like weather hit in the middle of the week and we did not have heavy coats :) 

The main reason for the trip was to see our second opinion HTC regarding Christian's inhibitor.  Not great news as of now.  His level is down to 11.9 but the doctor is truly stumped.  Christian is allergic to the Factor 8.  The avenue we are investigating is "desensitizing" him to the factor.  This would mean an extended stay in the hospital (in Denver).  But there is too much we do not know (and the doctor agrees as he is reaching out to colleagues across the country).  It's a little too much to even think about right now. 

We are reaching out via social media to see if others have endured this type of complication and will be attending an Inhibitor Summit this July armed with questions.  We are planning on taking it slow and getting our ducks in a row.

And yes, today was our first day back to work and school and the elementary calls...Christian has twisted his "good" ankle.  In the wheelchair he goes and is home with a bleed.  And yet again, another field trip is tomorrow and it looks like we may not make it.

There are many things in this world that are worse than missing his third field trip of the year...Boston, a wreck on I-40 yesterday killing a 7 year old child, losing a job, losing a spouse....but it still hurts that there are times when my son has to step back. 

It all depends on how we, as parents react.

I just pray that he eventually embraces his bleeding disorder. 

I know that sounds strange, but we all need to embrace ourselves just as we are, don't you think?

The School Nurse

Yes, I think my "Christian" has become a regular at the school nurse. Part of the problem is that his teachers are still pretty nervous about hemophilia. When in doubt, off to the clinic! Don't get me wrong, I would much rather he go to the clinic than have an injury overlooked. But, yes, I am getting a few calls weekly and go up to the school at least once during the week to check on him.

I am a little worried that he might think that going to the clinic is a "treat." I've already been telling him to "stay in class and not go to the clinic all of the time." I think he gets it, he's just excited about everything at school.

Have you had issues with your child at the school clinic?