Day 17: #HAWMC: Wordless Wednesday...create a Wordle

HEMOPHILIA

Day 6 #HAWMC: Letters

Dear Hemophilia,

Just wanted to drop you a line and let you know I despise you. I hate how I have had to infuse my son, through IV, from the time he was three days, yes, DAYS, old. When most parents were taking their newborn babies home we had to take our son down to Children's Hospital for a diagnosis and three day stay while he was held for medicine dosage, CAT scan and observation.

You've made him endure several pokes from nurses who said they were good with IV access to bypassing them all together and having us request the IV team for his infusions. You made our son feel like a hospital was his second home. That everyone has to go to the hospital. When he sees the logo of Children's Hospital, no matter where we are, he says "there's my factor mommy!".

My son has had to grow up early...that "kid" is wise beyond his years. He knows his medication days. He knows when he has a bleed. He knows what happens when he has a bleed. Even so much to ask if he has to go to the hospital or if we can take care of it at home. He knows that he needs to take it easy if he has a bleed and believe me when I tell you this is NOT fun. He is an active boy who wants nothing more than to be well...active!

I hate that I have to worry about each whimper in the middle of the night...is he in pain? Is he hurt? Does he have a bleed? Or with each bump or fall if it requires a call to the Hematologist. Or each time he says, "this hurts" if it's the start of a bleed. I hate that I have to type bleed so many times in this blog!

You really make me angry because your treatments are expensive. I hate calling and fighting insurance to get the things needed to deal with you. We have FINALLY been able to take an extended vacation because we have learned to self infuse and didn't have to time our vacation based on nurse visits.

But then...

I want to thank you. Yes, I know...it's weird. But thank you. Because of Hemophilia my son understands and notices his body. He is in tune to how things feel and can tell us when things feel funny. You have made our family stronger in being there for each other. You have given us the opportunity to meet some wonderful people in the bleeding community. You  have helped us raise awareness. You have made us thankful for advancements in modern technology. You have made us appreciate life and to make it the best we can.

So try as hard as you can to be a pain (and you do)...but your messing with the wrong family.

Not so fondly yours,

the Loving's

Day 3 #HAWMC

Wordless Wednesday...

Post a picture that symbolizes Hemophilia...

This symbolizes freedom, courage and hope for the Hemophiliacs of today.

Part 2...Our Story

Welcome back...I thought I would be back sooner but such is a life with a busy schedule.

To get you up to speed I left off at the initial diagnosis of Severe Hemo A, Factor 8 deficiency for our son, Jackson. We had asked our Hematologist what our son's life expectancy rate was. The look on his face was surprise...he said very calmly, "the same as if he wasn't a hemophiliac". That put us at ease but still we were so scared...of the unknown. We knew how to take care of a Type 1 diabetic but how do you take care of a hemophiliac? I envisioned padded walls and corners, no hyper dogs to knock him down and a life full of bubble wrapping my son. We explained our family history to the Doctor and how our hemo family members had all passed on. He then understood our life expectancy question.

Through the course of all this craziness the Hemo team discovered a raised bruise on Jackson's upper temple area. Most likely caused from the OB pulling him from the birth canal. He needed his first dose of factor at 3 days old. Jackson was admitted to the NICU at Cincinnati Children's for three days of factor. Our Hematologist rode with us down the elevator to the NICU floor. I don't even remember what we talked about. I do remember him apologizing for not being available the upcoming week as he was leaving on vacation and felt sorry he couldn't cancel it! (GREATEST Doctor you would ever meet!! I'll blog about him another day) We set Jackson up in his room. Had him attached to all kinds of monitors that kept beeping. All I wanted to do was take my new born baby home to be with his sisters and we were stuck in the hospital.

The next few days were full of visitors, a CT scans of his head, factor, meeting with Jackson's Hemo team...all of which is a blur. I stayed with Jackson while Joe went to be with our girls at night. He likes to Google things so he was searching one night and came across a Hemo Mom blog (he doesn't remember which one). He came to me the next day with a glimmer of hope and said he read on this Mom's blog about letting your Hemo kid be a kid. Don't bubble wrap them. There is factor to fix almost all the bleeds that may happen. But nothing to fix the potential emotional damage you may cause by not letting your kid be a kid or being super overprotective. It was from that point on I knew I had to help my son be all that he could be (with a little precaution if needed).

Jackson was finally released from the hospital factored up and doing well. The Hemo team had decided to start him on prophy dosing once a week. (Prophy dosing is giving him his medicine, called factor, once a week to help prevent any break through bleeding.) We had an action plan and took our baby home.

Looking back I'm glad I didn't know that Jackson was a hemophiliac. I would have looked up all the "bad" things that are Hemophilia related. I would have worried. It would have second guessed everything. Instead I stared Hemo in the face and said "Let's do this!" We would learn, we would adapt but MOST importantly...

we would LIVE!

So that's our story...the beginning anyway. Jackson is getting ready to turn 5 so I have to catch you up! I'll be back soon!

My boys! <3