Tuesday, March 2, 2010

It is done!

This post is something I have thought about writing for the past nine months but it never seemed like the time but today we hit a milestone. When Zander was born he was diagnosed with hemophilia, (to put it simply: he is lacking a component (factor VIII) in his blood that allows his blood to clot). It did not come as a huge surprise, my Dad had hemophilia which means I am a carrier. The odds of my boys having this disease is 50 percent.
Part of the reason I always wanted girls was so I didn't have to worry about hemophilia. When I found out Z was a boy, I knew in my heart he had it so when we got the tests back I felt like I had known for months. Thankfully, Zander hasn't had any problems up to this point, I mean he is bruised, but bruises happen to other kids. He is so active that his bruising comes as little surprise to me.
But on Friday he hit his head at my sister's house, I called his hematologist and they said he would probably be okay. Then on Saturday he stopped using one of his knees to crawl, it was like it was hurting him (this lasted until today). Again, this isn't exclusive to hemophilia, knees can hurt when you spend the day crawling around. Then last night, after Z's bath I was drying him off and lotioning him up and I felt a lump on his butt cheek. I didn't see a bruise but I could tell he had something going on. This morning I called up to the HTC (hemophilia treatment center) and the hematologist agreed that because of the combination of issues it would be good to do an infusion (it is putting that clotting agent back into his blood).
So to make a long story short, today was his first infusion, it is a big milestone and I am glad it is over! I have worried about his "first bleed" since the day he was born and I now I guess I can start to worry about the next bleed. It really wasn't that bad. The nurses are fantastic and very understanding that this first time (and times to come) are stressful. Zander wasn't that excited about them poking and touching his butt or his knees, but really he isn't too keen on the idea of strangers. The actual infusion lasted only a couple minutes, the hardest part for me was having to hold my baby down so they could get his IV in, he cried, I cried, we made it through, he got a little teddy bear, I got a pat on the back.
I am very thankful for my family, they are a huge support to Travis and I (more than they know). Each member for a different reason, the Lord blessed me with a family unit that can really help me learn this pathway.
I don't write a lot about my dad but I thought a lot about him today. I thought about how many infusions he had in his life. I thought about how he paved the way to make Zander's hemophilia a lot easier to deal with. The medical advances since my dad was diagnosed are many. Zander has so many more opportunities to keep his body healthy and to live a very very normal life.
Those of you who don't know a lot about hemophilia feel free to ask your questions, no questions are off limits. I am glad today is over, I love my baby, who right now, in a rare moment, is sleeping next to me on my bed.
Here is a picture of Zander's butt bruise (the doctor's agree this was a bad one---we tried to take it in a way so it wasn't exposing all his business.) Also, one of his medical alert bracelet (many who don't know what it is comment on how it is cute I put an anklet on my baby....)

17 comments:

Melissa + Brett said...

Oh my Nika! I had no idea Zander had it too. The bumb bruise looks so painful. I don't know a lot about Hemophilia...what is an infusion, what happens if he gets a cut, why did this make it hard for him to crawl? It's amazing how family and friends are Heavenly Father's tender mercies in this life! I love you and your strength is truly inspiring!

Nika, Travis, Ayda and Zander said...

An infusion puts the clotting agent back into his blood, it is done through an IV. If Z is having an active bleed (like into a joint, it will help his blood clot-stopping the bleed) It was hard for him to crawl because he had some bad bruising, it could have been worse but I think it was just painful. Like a bruise for you can be tender, same for him. Cuts and scrapes aren't a huge deal, he wont bleed to death. Just remember, he doesn't bleed faster or harder he can just bleed longer. If he got a cut I would wrap it(to help put pressure on it, allowing it to clot) and put a bandaid on it.

Ashlie Dalton said...

what a brave little boy- and mommy too. you do have amazing strength!
i didn't know anything about this (disease??) prior to reading this. i hope they continue finding ways to help people with it. good luck! :)

Marta said...

Our love and prayers are with you, hopefully our family can learn and grow and be supportive of your challenge. Thanks for sharing such a difficult challenge. We love to keep up with your little family!

Happy Holmes said...

A milestone! His buns look very sore. Poor little guy. So happy to hear the 1st infusion went well, for both Z and Mama!

I agree with the others.. you are strong. I know I tell you this all the time, but Zander has hemo, kasi his Mama is super, uber, duber on top of things!

Hope the pain goes away for Z, and he resumes his extremely active lifestyle!

Christy said...

time to start feeding him the peeps i guess :) bad joke - sorry...i couldn't resist.

Heavenly Father is so mindful - he knew if anyone, you could handle it with power and strength. You are amazing!!

let me know if you need ANYTHING :)

Cliff and Courtney's Family said...

What a lucky boy to have such a great, strong family unit to help support him through his life. I know that this must have been such a hard thing to post but a great step into healing and dealing with the situation. You have always been strong and that strength will only inhance and become greater. Zander is such a special boy and he already knows that he has a wonderful mom who will take the best care of him, and that truly is priceless. He is so stinking cute i would love to just kiss those cheeks.

e. said...

ok- the peeps comment made me laugh

Carly said...

And you had me tearing up too... There is nothing harder than seeing your baby going through pain--getting a shot or an iv or whatever it is. Seriously it stinks bad! He sure has some cute cheeks though! So glad to learn more about hemophilia especially in reading your answers to Melissa's questions and to get a little glimpse into your heart and your feelings. Thank heavens for modern and always improving medicine. Love you girl.

SNSsoup said...

Oh poor little guy; he sure had it rough there for a while didn't he. He is so stinkin' cute though,bruise or no bruise and YES, it's probably such a relief to you guys knowing that there's more medical help presently to deal with his hemophelia than ever before in the past. It truly is a blessing the medical knowledge we have in this world of ours now.

grammy said...

He's a cutie, but bum bruises are a bad deal for any of us! We are all here with our faulty gene pool to take care of the moment (peeps or no peeps).

aabrownfamily said...

Sorry about your little guy. He is a cutie and I'm so glad he's doing ok. It is so hard to see these little ones hurt. He's lucky to have such a loving family.

Nika, Travis, Ayda and Zander said...

Thanks everyone for the kind comments. Yes Christy it is time to pull out the peeps :)

Dej said...

You are the best mom! Z's a lucky little guy!

Amy Jo said...

I was wondering if this cute little Z had experienced a bleed yet, I guess I got my answer! I told my parents and showed them your blog, my mom says "Way to go Nika (in an excited way, not a "I can't believe you would do that" way), she is proud you made it through and she says each one that she has experienced has been easier than the first. WE ALL LOVE YOU AND TRAVIS and your little family!

gmagower said...

We have been so wrapped up in our own small problems that we have been hearing second or third hand. This is something we have never had to face...and we appreciate your information on a new phase of our family life. Needless to say you all are the main topic in our prayers. That is a precious big sister that Zander has. We are so proud of her.

Smolkaville said...

You are such a strong Mama and truly an inspiration to us all. Love you!