Job never fully recovered from his cold + swallowing issues... but never really got sick enough to need to go to the hospital... Until we took him in Monday, the 29th, for another admit for respiratory distress. We'll see how long we stay this time around!
This means that we miss even more appointments, like our annual cardiac neurological assessment at UW at the CHDD clinic, our regular weekly Speech Language Therapy and Physical Therapy, his preschool classes at the Early Learning Center, his 6 month post-transplant biopsy and, most devastatingly, his gel injections.
He started preschool, though he missed his entire first week and only made 2 out of 4 days of his second week and missed his third week (and counting). It was such a big decision to send him in the first place but he's hardly actually been there, so the jury is still out on whether or not it's a good fit for him and our family.
It was a month of decreased verbal communication, comparative to what he was doing just before his gel injections "expired". While he spoke much less, he is much more verbally responsive to questions and conversations than ever before. He tries to tell stories, but since he can't say much we fill in a lot of the words for him. For example, we went to the zoo and saw the lion sleeping on a rock. So when he decides he wants to talk about it, Job will make a "roar" noise and we'll say "oh! are you telling us about the lion?" Job will nod and we'll ask "what was the lion doing?" and he'll say ""'leeping" and we'll say "yes, the lion was sleeping. Was the lion small or big?" and he'll say "big!" It's obvious that he now wants to talk but he's just very limited by his vocal cords. He sometimes gets a phrase out, like he'll say "juice yuck!" when we offer him juice or he'll say "no, no, water" as he's also signing "please" because all he wants in life is the taste of cool, refreshing, non-thickened water.
It has also been really really hard to get enough food and drink into him. He wouldn't have gained weight this month were it not for his obsession with chocolate milk (to the exclusion of almost every other beverage). Our goal is 30oz/day and it often feels like we do little else but try to get him to drink all day. That's certainly an exaggeration, but it is a constant concern and I always have a running ounce total in my head.
Despite these difficulties, we did have pockets of fun! We went on a lot of walks and to the zoo and to a Mariner game and started preschool and played with brothers and watched Paw Patrol and played with friends and celebrated his third birthday and looked for Easter eggs and discovered a love of chocolate milk and chocolate ice cream.
