Saturday, December 29, 2012

Plans, plans

When you have a child with a bleeding disorder, making plans is almost funny.  It's as if you are tempting fate and asking for a bleed to happen.

We had planned on taking a few days to get away to Santa Fe (an hour away) to recharge and get ready for the New Year.  But as fate would have it, the day after Christmas, "Christian" developed a knee bleed.  Thankfully we caught it in a good amount of time and he did not endure a great deal of pain.

I am not one to let a bleeding disorder stop my son/our family from living, but sometimes you just need to "raise the white flag" and do what you need to do.

It's not about where you go or the money you spend in having fun, it's about the time you spend with your family.  Lasting memories are made at Disneyworld, but they are also made in the comfort of your home.

I pray that the year 2013 brings you and your family great peace and joy.
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Monday, December 17, 2012

A Revelation...and a Shoulder Bleed

I took "Christian" to his play therapy appointment earlier this evening.  It went extremely well.  The therapist had him playing in a sand tray as she watched him and asked questions.  It was very humbling to hear her talk to him.  She would ask him how he felt about infusing, about school, and basically what he thought about everyday things.

We had a pretty big revelation looks like Christian's resistance to infusing started when we moved this summer.  He even said that he missed a few of his friends.  It never dawned on me that he would have trouble with the move.

It all makes sense, because he did not have any say in relocating.  It's as if he needs to take control where he can and put his foot down where infusing is concerned.

The funny thing is that he is thriving here in Rio Rancho!  He loves school, is doing very well in class, has friends at church and loves his new house.  But what we did not do was help him transition.  We just assumed it was going to be easy for him because of all the opportunites that were in store for the entire family.

Now that we are having to take him in to the HTC once a week to be accessed he has to be held down by at least 4 nurses.  There is just no other way.  We went through the drill this morning and now his shoulder is hurting.  I know it's a bleed starting.  And it must have happened while he was being held down.

This is absolutely breaking my heart.
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Sunday, December 9, 2012

Play Therapy...the Consultation

Our appointment with the play therapist went very well.  "Christian" really like her (especially the toys in the room).  The therapist spent our first session getting to know background about our family and Christian's diagnosis/journey. 

It was really interesting to watch how she interacted and questioned him.  I will admit that I have been in plenty of therapy (and am a much better person because of it) and watching someone work with my son was pretty amazing.  You have to hold yourself back from answering for your child and just let them be who they are.  I found myself catching myself often.  I guess it's just the mother in me.

The plan is to attend a session every other week with the hope that progress, where Christian's fear of needles is concerned, will be made.  The therapist has given us the "deadline" of February to stop and evaluate how things are going.

I am glad we have a plan in place and we are moving forward with what I am hoping will help Christian conquer his fear of needles.

I have a feeling it's going to take a long time...but it's about the journey, right? 
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Sunday, December 2, 2012

Catching Our Breath

On the Sunday after Thanksgiving "Christian" developed a nasty knee much for making it through the holiday without incident :)

The knee was not looking any better after a day and night of Q3 so we took him in to the HTC for a quick check and were admitted to the hospital.  With Christian's inhibitor, we often have to go into the hospital to get the bleed under control.  Thankfully his pain was not out of control like his last ankle bleed/hospitalization.

His weekly port access is still very difficult.  The HTC nurse thinks that he is exhibiting signs of post traumatic stress.  It makes sense.  Tomorrow we go for our first appointment with the play therapist. 

I sure hope this is a road that will give Christian some understanding into his fears.
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