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!
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| My boys! <3 |
You are such an inspiring family!
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