I Knew it Was Worse

"Christian's" ankle has not been right. As he has been playing tee ball, it has been extremely obvious that he can't run like the other kids. It has just broken my heart. He doesn't seem bothered by it, but the truth is that he can't keep up.

I insisted on a new MRI and I am so glad I did.

He has joint damage from repeated bleeds into his right ankle, but the MRI showed significant change from his last MRI a year ago to the "talus" bone in his foot. Now we know why he has changed his gait and protects his foot.

The good news is that it can heal, the bad news is that tee ball and soccer are out of the question, at least for now. We have signed him up for swim lessons and hope that he loves it.

I almost ignored the problem and hoped it would just go away on its own. But deep down I knew it was something more. The doctor even admitted that he wasn't expecting anything to show up except a possible bleed, and was very surprised.

You have to go with your instinct. Sometimes it makes absolutely no sense, especially if a doctor is telling you otherwise. The "professionals" do not always have it right. When you are the parent of a child with a chronic condition, you are the ultimate expert! Don't forget that. Speak up! Be heard! Make a little noise if you have to!

The bottom line is that you are advocating for your child.

That is reason enough to be the squeaky wheel.

Different

My "Christian" is in his second week of tee ball. He doesn't really know what he's doing yet, but is having a great time :) Tonight at practice, my husband said it was really evident that Christian was having trouble with his ankle (target joint).

When he runs he has a little "hop" to compensate due to all of the pain he has been through with that ankle. He's the last one to come in when they run the bases and it's just obvious that something isn't right.

He is scheduled for an MRI on Monday to check and see what kind of damage has been done. I'm a little afraid of what we may find. I know something is wrong, and it may be in the very early stages, but my gut just tells me to start getting prepared.

Our first stop tomorrow is the city pool.

The First Practice

"Christian" had his first tee ball practice last night. I was totally fine with the whole idea until I started to see the wild throws those little kids make! I was pretty nervous. He was a little clueless, but started to get the hang of it.

His coach is a young woman who has an amazing amount of patience. God bless her! She was so caring and loving with the kids, that it makes my nervousness all the worth while.

Truth of the matter is that my boy is a "social butterfly" and needs that environment...even if wild balls are whizzing around. I have factor with me at all times :)

Trusting through Transition

My "Lance" is fourteen. He will be fifteen on the 23rd! I don't know where the time has gone, but before I know it, he will be on his way to college.

Over the past few years my husband and I have been working on him taking responsibility for his bleeding disorder. He keeps track of his supplies and orders his factor every month. Here lately he's been slipping on infusing regularly. It often takes more than a "gentle" reminder.

Lance is part of a group of boys that have not experienced joint bleeds. I am so incredibly grateful for that, but it also leads to complacency on his part. You would think that since he has seen the extremely painful bleeds his little brother has gone through that it would encourage him to keep to his infusion schedule….well, it's a nice thought.

He has been in California this week on choir tour and I have to trust that he infused according to schedule.

Letting go is not easy. We just have to make sure we give our children the tools they need when they leave us.

Full Circle

I love seeing things come "full circle." You know, when something generous or kind comes back to you.

I have a sweet friend in Texas, "M". When her son was diagnosed with hemophilia, she reached out to me and my husband and we became regulars in their home. Those bleeds early on for her son would bring us to her home for support. I did the best I could to reassure her that hemophilia could be dealt with and that her son could live a very full life. He is now a very active baseball player with no joint bleeds to date! M and her husband are avid workers in the local hemophilia community and have helped numerous people in their same circumstances.

Knowing they are big baseball folks, I called her and asked her advice on tee-ball. I am clueless when it comes to sports and my "Christian" is going to be a big sports kid. She talked me through the basics and I feel much better.

She came back and shared her experience with me, reassured me, and left me feeling as if I was not alone.

I think that is what it is all about in this community. Not feeling alone.

We must reach out to others. We need to stay "in the loop" with our local chapters and meet others who may need our help, but also meet those who may help us when we least expect it.

Occupational Therapy

Last summer my Christian's body rejected his 2nd port. It was pretty awful. The port pushed its way out of his chest. It was removed and we had to pack the open wound and let it heal before the 3rd port was placed. This was the second time I ever felt as if I was going to faint. I didn't think I would be able to do it, but when your child has a hole in his chest and the only way to care for it is to clean and dress it, you dig down deep inside and just do it.



Before his 3rd port was placed, the doctor recommended a PICC line be inserted while the wound healed. It was an awful experience. Christian was having a bleed in his left arm, so the doctor attempted to place the PICC in the right arm. Nerves were hit and major damage was done to his arm. The doctor placed the PICC in the left arm and all was well, we thought.


Christian endured pain for the next few months. He could not use his index finger and thumb and was in constant pain. It was just awful. His saving grace was occupational therapy and Mr. Bob. It was very tedious work, but Mr. Bob made his therapy fun (actually I'm not sure who enjoyed it more, Christian or Mr. Bob.). By the end of the school year, Christian was finally able to use his fingers without pain. Honestly, I thought therapy would be a waste of time, but is was a huge blessing.