Friday, August 28, 2015

I am back!

It has been a long time since Endre or I have written on this blog. Life gets busy. But recent events (I'll get to it) caused me to reflect on the boys early experience with hemophilia.

Zander is now six, he is starting the first grade soon. I am still amazed at how fast this time has gone. Zander hasn't had any major issues at school (pre-k and kinder) and I anticipate we will continue on that same path. He attends a small charter school and the teachers are aware of his bleeding disorder and they called me a couple of times last year to ask questions but I never had to go to the school for infusions.

Zander is the same as he was when he was little (because six is big??), he still bleeds a lot. His port really is our life saver. He gets break through bleeds all the time (at least a couple times a month, sometimes more, never less) It still takes us a couple double doses a couple times a day for a couple days to get bleeds under control. This is our normal. Usually, at his yearly comprehensive visit, we up his dose. Sometimes we see that higher dose cut down on the amount of spontaneous bleeds, but that is like a honeymoon phase and it ends quickly, then we are back to lots of bleeds.

Zander takes this all in stride. He doesn't complain (about needing infusions), he knows when he is having a bleed, as I looked back on the blog, I was amazed that at age 2 1/2  he was asking for a needle day. This is Zander's normal.

Much to our surprise at our comprehensive appointment earlier this week, I saw one of Zander's original nurses, Cyndi. She was there when Zander started prophy (9 months old) she was there when he was diagnosed with his inhibitor, when he bled out during his PICC line placement, when he had his port placed, she removed that same PICC line. She taught us to use his port and was a huge part of our early journey with hemophilia. I was so sad to see her go, although happy she was having a baby and she was able to be at home with her daughter. At that early stage we needed strong nurses, we needed these women who helped us navigate our way. Then, after Zander had his port, things changed. We didn't need to go to the center, except one time a year for a comp visit. We didn't call and ask questions. We just did what we needed to. Needless to say when I saw Cyndi, I was confused and then excited and then really excited. She looked through my list of Zander's bleeds for the year and commented about how he is still bleeding the same as he did as a baby. She was not happy with this. She was not willing to accept this as normal. She had several ideas, first of which was to do a recovery study to see how well his factor was working. She didn't just want to increase his dose, she wanted answers. I can't say it enough, I love her. I didn't realize I had become so complacent about Zander's ability to bleed. I really had accepted it as life, I know which activities will cause bleeds (the beach without shoes), again this has always been Zander's pattern of bleeding.

We are going in next week to do a long recover study, longer than we have ever done. Our last recovery study was 24 hours. We saw that Zander, as he always has, metabolizes his factor really fast. Interestingly enough, when they did a blood draw this week, she ran a level on his factor (which we gave between 3-4 hours earlier) he was at just 49 percent. We were both amazed at how low he was. So, with the recovery study we will see if his 100 percent dose is even getting him up to 100 percent. We will see how long he is protected (I was always amazed he could get a bleed on a prophy day, but it happens not infrequently), we will run another inhibitor test. Then after the 36 hour recovery study, we will discuss our next steps. Do we want to switch products, do we want to use a plasma based product (research shows it is more effective in children).

I am excited to get answers. I am excited Cyndi pushed me to not accept his bleeding as normal. We can do better. Zander deserves better.  I will post updates as we receive them, Even if no one reads the blog, I am glad we have it. I was able to go back and read about Zander's early journey and see that he really has had a pattern that he has always followed. It is good to write things down. I am glad that I keep records as closely as I do. I can track bleeds and compare old records with current records. I am glad that even though Zander does every other day prophy and a lot of infusing in between, that he doesn't know it isn't normal. He is happy. He is healthy. He is "all boy." It takes a lot to slow him down, we learned recently that he can even go pretty fast on crutches.




Thursday, June 5, 2014

walk shirts

Endre, mother to Harris is VERY talented. We had a new name for our hemo walk team this year and she came up with this idea....LOVE IT! What do you think? There is still time to sponsor us!


Saturday, May 31, 2014

The Clot Thickens.

This is just our second year having a hemophilia walk in Oregon and we are getting our walking shoes ready to go. We will be walking June 28th. I made a video this year of Zander and Harris (ages five and four) talking about what hemophilia means to them. You can also see they are very typical boys, they have likes and dislikes and one thing is for sure, hemophilia doesn't define who they are. It isn't who they are, it is just one part of what makes them, them. If you can donate that would be great CLICK HERE. Enjoy the video.
video

Wednesday, August 28, 2013

First set of stitches

Notice how I said first, I am sure we will be back for more (knowing Zander).

A couple weeks ago we did a quick trip to Elko, Nevada for my grandma's funeral. After driving all day it was finally time to relax, wishful thinking.

Zander and Ayda were chasing each other around and Zander ran down the hall, giant bouncy ball in tow, he ran smack into the partially opened bathroom door and split his forehead open. Travis grabbed Zander and I went to get his factor ready and that is when I saw the blood. A lot of blood. It was the first time Zander has ever had an injury like that. It took just a second to wrap my head around the fact that I wouldn't be able to just infuse and be done. We did a double dose of factor and we were off to the OHSU emergency room.

I have said it before and I will say it again, an ER with valet parking is pretty good to me. By the time we got to the ER Zander was pretty calm. We still had a bandage on his head and an ice pack. We went back and Zander talked everyone's ear off, never leaving one detail out of how he hurt his head. Zander has only been to the ER once before (when he was one...pre-port) and now that he is old enough to understand I talked to him about everything they were doing. I told him they would put numbing cream in his cut and it is just like the cream we use on his port. When they asked if we wanted to do nasal versed or nitrous to keep him calm during the procedure, I asked Zander what he wanted. I am not sure if the nurse thought I was nuts but I figure it is his body and his choice.

Although it was pretty funny to hear his reasoning for choosing the nitrous. I explained the versed would be sprayed up his nose, he launched into a story about how he picks his nose and how it is okay to pick your nose but you shouldn't put other things in your nose....so he picked the nitrous because he would get to wear a mask and superhero's wear a mask. I laughed.

When they went to clean out the wound the doctor was telling him he needed to spray it with special liquid, to which I said, he is cleaning it with saline, just like we put saline into your port. The doctor told him he couldn't touch his special cloth, I simply said that is the doctor's sterile field. He knew not to touch it.  The nurse commented how well I did explaining stuff to Zander, I guess there is no need to talk to him like a child when he knows as much as he does about different medical terminology.

The stitches went in, five or six in total. Zander did great. He rocked an awesome black eye and has a cool little scar.

Thursday, May 30, 2013

Come one come all...walk for hemophilia with us!

video
This is the first time our Hemophilia Foundation has sponsored a walk and we are excited to participate. We are always on board with any chance to raise awareness about hemophilia. Here is a little video we made about our bleeder crew!! We really do have a bloody good life. If you have any questions about our bloody good disease let us know and we can answer them.  If you are able please click the link below and sponsor our team!!

Click here and then click "sponsor this team"...

Saturday, February 9, 2013

Alive and kicking

We are alive over here at The Bloody Good Life!! Here are a couple pictures of the world's cutest hemo's.
Zander is now doing a pretty large dose of Advate every other day to help keep his joint bleeds under control. Nothing slows either of them down!!
Swimming is good for the joints!
He is a master at holding his breath!

Thursday, July 26, 2012

Hemo pull...

The next generation of hemo's (Jack, Zander and Harris)

Jack was a good sport to run the boys down the hill....many times.