Saturday, January 12, 2013

Day +280

I hope everybody had a wonderful holiday season! We enjoyed spending time with our extended families, including those who traveled great distances to be together during the holidays.

Jacob is doing better since the last time I posted.  His tummy finally settled down thanks to a regimen of Activia and Culturelle.  The probiotics seemed to balance his tummy back to normal.  Other good news is that Jacob's appetite has improved significantly.  I'm hoping we will finally see weight gain at his next appointment, instead of a loss, like he had at his last two appointments.

Jacob saw a dermatologist last month to address his skin issues.  His skin has been flakey and rashy.  He is using several creams and lotions and we've seen some improvement in that area.

Josh and I enjoyed a trip to Las Vegas to attend CES this past week.  The boys stayed with Josh's parents and did great!  I was concerned leaving Jacob, but he did fine away from me.

One of the current issues I'm dealing with now is trying to figure out what type of schooling would be best for Jacob.  I can't believe he will turn 5 this year!  I'm pretty certain that attending a traditional kindergarten class would not be a good fit for him.  He hardly has any experience interacting with other kids besides Ethan and his little cousin.  Not to mention, that he is about the size of a 3 year old.  It would be more than I could bear to have him get picked on at school because of his size.  Like he hasn't been through enough already.  He is also difficult to understand.  He has a hard time forming his letter sounds correctly, and I'm pretty certain it's because of the 3 1/2 months that he was inpatient at CHLA in 2011 when everyone had to mask up in his room.  That was such a crucial developmental age for him and he couldn't even see our mouths.  He begins speech therapy this month through Kaiser, and we are in process of getting him into the school system's speech therapy program as well.  Hopefully we will see quick improvement there so he won't get frustrated trying to communicate with his teachers and classmates when he does start school.  I'm also worried that a combination of being stuck in the hospital so much of his life and the side effects of the chemotherapy may have caused some memory problems.  We work really hard at learning his numbers and letters, but he has a really hard time retaining any of that information.  So I'm trying to figure out my options and where Jacob would feel the most comfortable when the next school season rolls around.

I'm also deciding if we should take him back Seattle for his annual testing.  Traveling takes a lot of coordination and I'm pretty sure that all the testing they want done can be done locally with Kaiser.  Then Kaiser can just send them the results.  Anyway, I still have some time to decide.  His year mark isn't until April 6th, so I'll have to think on it some more.

Here are some of my favorite shots from vacation:

Boating Fun

Cousin Love

Group Shots