A Big Difference

Before our trip to Florida, "Christian" was having a few issues and we ended up bumping up his dose of Novo from 2 mgs to 3 mgs. It seems to have really made a difference. Our fantastic Walgreens pharmacist is the one who brought up the dosing change. Apparently the European dosing is different than here in the United States, and it is being adapted more and more here. We talked to the hematologist (who is trying to hold things together through some pretty big growing pains at our HTC) and he was very agreeable.

I hate to even think about the fact that Christian has been doing so well, but he really has been! I am looking forward to his next inhibitor draw. It would sure be nice to see his numbers continue to go down.

It's not about the numbers, it's about living life to the fullest each day (but starting immune tolerance would sure be nice) :) :)

When You Wish...part 2

We are some tired puppies! Day two of theme parks completed! I was worried about "Christian" keeping up with his ankle problems, but so far so good. Roller coasters, simulated rides, Hogwarts...we are having a great time:) We sat down to dinner tonight (at the Give the Kids the World Village) and a huge revelation came over me. My family's biggest worry is how to get in all of the rides and attractions we want to see in the next few days (while avoiding the possible hurricane) and sitting next to us at dinner is a family with a child who is a parapalegic. Another child in the dining room is wearing a leg brace with a strap around her waist for someone to assist her as she walks and other children are wearing caps over their hairless little heads. They have and are continuing to struggle.

Yes, my Christian and Lance have their struggles too, but I will take our struggles any day and make the best of what each day brings.

Each member of my family can walk, sweat and keep up with each other while enjoying ourselves. And when we need to slow down, we do. We love each other like no one else possibly could. This "wish" trip has given me the opportunity to see true, pure joy on the faces of my children. That is a huge gift. It is something I haven't slowed down enough to see lately...and I am grateful.

Today I Am Thankful For:

1. Rain
2. Soft, chocolate chip cookies
3. A racing heart (after a thrill ride)
4. Bright colors
5. Swimming pools

When You Wish...Day 1

Did you ever wish upon a star? Maybe you looked up in the night sky, saw that special twinkle in the night, and wished for something...to be famous, for a new television, to have a talent like none other.

Sometimes our wishes are big (maybe they even qualify for big dreams) and other times they are simple and unassuming.

Children with chronic illnesses struggle in so many ways and there is an organization called "Make a Wish" that helps to grant these children's wishes.

My "Christian" was referred by a member of our hemophilia treatment center and we are now in our "villa" at the "Give Kids the World" resort in Kissimmee, Florida. It is absolutely unbelievable. Not just the fact that our family is here, but the love that has been shown to us by complete strangers. At this resort, you are treated like kings and queens and for a moment in time, your child is "given the world" and in this case, "the world of Disney."

Some of these families have never been on this kind of trip and would possibly never have the opportunity to take this kind of trip. You have absolutely no worries about getting from one place to the other, food, entertainment, the whole bit.

Another amazing thing is that is takes over 1,500 volunteer time slots for one week to make the "GKTW" Village run. These people are giving their time to make our family have an experience we will never forget.

Sometimes it's just too much to accept and let sink in.
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Maybe a Little Normalcy?

When you live with a bleeding disorder, is there ever "normal"? I mean, the minute you think about life going along without issue, a bleed happens, the port stops working, you run out of syringes…..etc.

"Christian" is recovering from a bleed in his foot and leg, we accessed his new port yesterday and it is working beautifully and he went back to the sitter's house today and played hard. My "Lance" is doing well without bleeding issues (if I can only get him to infuse regularly without my nagging….). We even have a new dog in the family and she fits in as if she has been with us forever.


We are looking forward to our Disneyworld Make-a-Wish trip in 12 days and are hoping to just spend some quality, family time together without work worries and cell phones. I can't wait.

The Saga Continues

On Tuesday evening, the second IV blew.

It took six sticks/pokes to start a new IV. My "Christian" broke out because of nerves. He was so upset. I can't believe I had left. My husband was there to take over, and I hate to say it, but part of me was relieved I didn't see all of that. I had been with Christian on the previous Thursday when we access his old port several times and it was horrible.

Sometimes you have to rely on others to help. I don't know what I would do without my husband. How people survive as single parents is completely beyond me and single parents with children that have a chronic condition? I don't know if I could do it. I admire them for what they do.

Today Christian developed a bleed on the top of his foot from one of the IV tries. My husband tried to keep him calm, as calm as you can keep a five year old, so that the bleed would start to resolve.

The other good thing is that the nurse accessed the new port tonight! It's working great! And his inhibitor is down to 34!

I just hope that the bleed is under control so that he can come home tomorrow as scheduled.

It's been a rough week, but my Christian is one tough cookie.

Precautions

My "Christian" is doing very well. We have even move to every 12 hour factor infusions. His incision is healing and all looks great. The only problem is that he must keep an IV in until Friday. His veins are pretty torn up and traveling home, two hours away, poses some concern. In our little town we do not have a lot of back up with nursing and are afraid to depend on one person (the nurse that helps us out is not always available).

The team decided it was in our best interest to stay in the hospital until we can access the new port on Friday. I know it is the best decision, but it sure stinks to live in the hospital. I knew the minute we would leave and get home that the IV would blow and have to turn right around and come back.

All in the name of what is best for my son.