Allergy Diet Day 6

Jaxon heads into surgery tomorrow to get his port-a-cath removed. He's had it for 7 years to get medicine for hemophilia into his veins easily. Now that we can poke his veins in his arms and hands he doesn't need it anymore. Training wheels are officially off tomorrow.

But that means the diet is probably not going to stick, which is fine because I don't think I've seen any difference in behavior, which is disappointing, although I like the home-cooked healthy (for the most part) meals. I'm going to resolve to do more cooking and stick to my menu.

Menu-

Breakfast: Oatmeals and apples (again!)

Lunch: Chicken rolled in crushed potato chips and baked and served with toothpicks. Also green beans and fresh veggies with hummus

Dinner: Seasoned pan-grilled mahi-mahi, Spanish rice, and home-baked sweet potato fries. Also, sliced heirloom tomatoes on the side.

Dessert: ICE CREAM (for me and Mark. The stress broke me and I have now begun eating for emotional reasons)

Did I mention that I broke (or sprained) my pinkie toe yesterday? I'm limping a little and it was a blessing that there was a woman auditioning to teach Zumba in my class today so I only had to teach half. It's swollen and purple. Totally lame. Also lucky that the studio I teach at is closed for the October break so I didn't teach tonight.

The Moment I Was Dreading

I knew this day would come, but I didn't know how well I would handle it. I did pretty well, I think, but you can judge for yourself.

I've been learning how to infuse Jaxon peripherally (through his hand and arm veins) over the last few weeks. It's pretty tricky, but Jaxon has been amazing, not complaining and even being exciting about practicing on fake plastic veins. (He wants to practice on me, too. I haven't let him yet, but maybe I should)

So today, Jaxon looks down at his arm in the tourniquet and is probably just beginning to understand that he has to do this three times a week for the rest of his life.

He looks up at me and says, "Mom, I wish I didn't have hemophilia."

In my heart, I cried. I know, Honey, so do I. In this moment, Jaxon articulated what I have been feeling for seven and a half years. Up until now, he's hardly been aware of his bleeding disorder or it's impact on his life. He's a very healthy boy and hemophilia only affects his life 5% of the time. But, here we are in the 5% and it's still something that holds him back, that makes him feel different, that could potentially kill him. I knew there would be a time when he said this to me, but it still broke my heart.

So in my most cheerful voice I said, "Yep. But you have it. That's how things are. I wish I didn't have these dark circles under my eyes. That's why I wear make-up. You have hemophilia and you get this medicine to fix it."

Okay, so it sounds pretty lame now that I've written it out. But, I don't want him to think it's okay to feel sorry for himself.

I can do that well enough for the both of us.

For Asher's 4th Birthday. . .

Today I sent this email out to some family and friends. I've been delighted at the response we've received both in donations and words of encouragement. The love of our family and friends has brought me to tears. Thank you!

Our little Asher turns 4 on the 16th, the day before the P.F. Chang's half-marathon. Mark and I are running as a team, Stomping Steeds to raise money for the AZ Hemophilia Association.

Both Asher and his big brother Jaxon have severe hemophilia A, which means their blood does not clot at all. Thanks to wonderful health care advances, both boys live normal lives, but they are very much dependent on their expensive tri-weekly medication to be able to run, jump, and play like other boys. The AZ Hemophilia Association is a non-profit that helps families like ours as we navigate the difficulties of raising children with a chronic bleeding disorder. The Association helps us with health insurance reviews, family retreats, and summer camp for our children. As a board member for six years, I know that the AZ Hemophilia Association is dedicated to its mission of enhancing the quality of life of people with bleeding disorders.

So for Asher's 4th birthday, will you give the gift of supporting our team?

Please go to our team page to donate. Any amount will be appreciated. We are 25% to our goal (88% now!) and we know that our friends and family are so supportive that we can reach our goal with only 12 days to go.

Your donation will be rewarded with photos of the race, as Mark and I run/walk/crawl across the finish line.

Thanks and have a happy New Year!

Two Trips to Phoenix

It takes about 30 minutes to get to Phoenix from my house.

This morning, I loaded up Asher and Fin and took them to visit Emily, my dear friend. We had a great time talking, encouraging our Ashers (yes, we both have sons named Asher) to share trains, and planning our feminist retreat for next March. We finished our visit with a trip to McDonald's, where Emily's ward had a playgroup. She introduced me to her ward friends and explained that I lived in Gilbert. One friend asked how we met. We looked at each other with a bit of amusement and embarrassment as Emily enunciated, "We met on the internet."
Wow, that was funny. I guess I don't say that very often. But, it's true.
So, that was the morning, fun and a little embarrassing (I showed up early and I forgot my wallet, so Emily bought us lunch). But, we had such a great time, it totally made up for my chagrin.

So, you're asking yourself how I could possibly have another trip to Phoenix in the same day?
Here you go:
Jaxon's teacher calls and leaves me a message that Jaxon is very lethargic, falling asleep on his desk in the afternoon.
Thirty minutes later, Jaxon stumbles off the school bus and the girl behind him tells me that he fell asleep on the bus. He walks into the house, throws his backpack on the floor and collapses on the futon (the closest piece of furniture). So, I think, "He had a late night and woke up early. He's just tired."
But then, 45 minutes later when I take him to the car so we can go to grandma's for swimming and dinner, he seems hot, and non-responsive. Immediately, I start to think of his last port infection, and how similar his symptoms are.
A few phone calls and 12 minutes later, we're at my mom's house. I don't even wait for her to use her too-slow glass thermometer to get an accurate temperature. He's too hot, he's too lethargic. I call our nurse/friend/mother of a hemophiliac, Lori (aka Doctor Lori) and she tells me to bring him in. And, she says, if he gets worse on the way, pull over and call 911.
So, Jaxon and I take off, and on the way, he starts to wake up a little. By the time we get there, he's alert, mostly himself and that's good, because there's no parking anywhere near PCH emergency department. We got a spot on the 3rd floor of the parking garage and made our way to the entrance.
The benefits of having hemophilia are that they'll call ahead to the ED and reserve you a room.
It's like having frequent flyer miles :)
So, Jaxon looks pretty good, his fever's not that high. He's STARVING, though, and asks every single person who walks in the room, "Where's my dinner?" And we take that as a good sign.
After they draw blood and give him an antibiotic (and dinner), they send us home.
That whole event only took 3 hours.


So, that was 2 hours in the car today. Quite an eventful day, actually.

Blazing Steeds on the Hemophilia 5K Walk-a-thon

Mark and I have started a team for the Hemophilia 5K Walk-a-thon (held Sunday Sept 28, in Phoenix).
We're recruiting people to join our team, get a t-shirt, and support the cause.

If you're interested, go to the Blazing Steeds fundraising page (isn't that a great name? I came up with it myself :)

I haven't written about our hemophilia story, but I thought this would be a good place for those who've never heard it (or as a refresher for those who have).

Jaxon and Asher have severe hemophilia A. They are missing the genetic code that makes a protein essential for clotting blood. (It's called Factor 8 because it's the 8th in a clotting cascade. Without every domino, the process fails). So, their bodies don't make this protein at all, so their blood doesn't clot.
At all.
So in 2002, our first baby boy, Jaxon was circumcised, and it didn't stop bleeding for 24 hours. Diagnosis was one thing, but understanding the treatment was another.

Everyone reassured us that our baby would be fine. But, they said, he could have spontaneous bleeding (not from trauma) in his joints, organs, or muscles. Even in his brain. And, since he was a baby, we'd never know. So, of course Jaxon had colic, and when he would cry for long bouts, we would wonder if he was bleeding. We were never confident.

Jaxon had a lot of bruises, but not all of the problems other parents of children with hemophilia had. He didn't have bleeds in his forearms from banging his arms on the high chair tray. He didn't bleed while teething, and we never got reported to CPS for a child with too much bruising.

After he started walking he stopped abruptly and cried in pain. After a few hours, we suspected a bleed in his left hip. We treated him with the very expensive, but very safe and effective medication called factor (it's a synthetic factor 8 protein) and his symptoms disappeared.

After this first bleed, our hematologist medical team recommended a port-a-cath as a way to access deliver the factor into Jaxon's blood without having to find a vein every time. Jaxon then began prophylaxis, or preventative treatment.

The port-a-cath required surgery, and it was difficult to let them put my baby under the knife at 13 months old. But, we have been so glad that we did. Now age 6, Jaxon still has his port and gets his infusions 3 times a week. He has only had a handful of bleeds ever since.

After his diagnosis, we did genetic testing and determined that I am a carrier for hemophilia and that my mother was not, which means that it was a genetic mutation that occurred when I was created. So, since one of my X's is affected, I have a 1 in 4 chance of having a son that has hemophilia (and the same chances for having a girl that is a carrier).

When I was pregnant with Asher, I had an amnio and learned that he, too, would have hemophilia. It was a difficult time, but we have been so blessed with Jaxon's health that we weren't as scared as we were when Jaxon was born.

Everything went well with Asher until he got a big goose-egg on his head. Although it wasn't a brain bleed, it was on his head, so it was a concern. After we treated it, we decided to place a port in his little 8 month old body. That was so scary. But, he did great, just like his brother.


He's 2 1/2 now and hasn't had any joint or muscle bleeds that we know of. He has had some trauma (like when he sliced his head open on the minivan) and we've treated for those incidents.

So, we have been very blessed, or very lucky, but still wonder what the future of hemophilia holds for our children. Some possibilities are inhibitors, where the body attacks the factor 8 protein as a foreign object.
At best, hemophilia is inconvenient. At worst, it is deadly. Both boys wear medicalert bracelets on their ankles as a safeguard. We have to discuss these issues with teachers, babysitters, friends and family to make them aware of our children's special needs.

So far, our children's lives have been nearly normal, and that may or may not continue. They can play most sports, provided they infuse beforehand. (with the exceptions of football, boxing, and hockey) They will not be able to go away from home without parents until they can learn to self-infuse, which will probably be around age 9 or 10. Their ports will come out eventually (they usually only last for a year or 2 in cancer patients) and they will begin to infuse peripherally, through their veins.

We anticipate the future with much hope and continue to look forward to a cure, which is really not that far out of reach.
We just need a little luck and a lot of support.