Week 5

These weeks are flying by. How has it been 5 weeks already!? 

Mark and I had no idea what we were getting into when we brought Will home, but we both agreed that our love would be enough for him and let ourselves be hopeful for the 1 month mark, knowing that it was a long shot. We have surpassed that. Though Will's doctors disagree with us, we are now letting ourselves be hopeful to the 3 month mark knowing how rare that is. I am letting myself dream of celebrating Halloween, Thanksgiving, and even Christmas with him. Perhaps, I am setting myself up for complete heart-break, but I don't want him to ever think that we didn't have faith that he could make it as far as he wanted.

Given that Will has never been treated like a "normal" newborn, he didn't get the regular check ups,  measurements, or treatment of a newborn. Hospice is used to dealing in geriatrics; thankfully pediatrics is not their specialty. So when we hit the 1 month mark, I was curious what their thought would be on taking him to get a regular newborn check. Since he had been crabbier than usual, and since we don't know much about his internal organs, vision, or hearing, it is hard to tell just what might be bothering him. Although he has a lot of unique characteristics and they keep reminding us what a "rarity" he is, much of him seems similar to the other girls...and his crabbiness to me seemed like a common ear infection. I couldn't see the harm in pushing for a routine check up for him with our family doctor, who didn't see all of his anomalies, but rather, our sweet baby boy.

It was our first solo car ride and given that Will can't tolerate a car seat yet, it was kind of a nightmare. We had to pull over twice; once for choking, once when he stopped breathing. It seemed like a looong 10 minute ride. However, it was a great decision. While Hospice thought the crabbiness could be a sign that Will is getting tired of the fight and may need some morphine, she confirmed that he did have a double ear infection that could also be the cause and gave us a simple dose of amoxicillin. Given his craniofacial structure, he is far more susceptible to ear infections than the girls were. Though he wouldn't open his eyes for her, she reassured us that if the build up in his eyes is due to infection, it would clear up his eyes as well. If not, no harm done. It was such a relief to have an easy fix to such a common issue.  Cheers to a happy week 5!

Helping Emma with her homework, he's a great study buddy.