Thursday, October 22, 2009

October update

(vision stim with christmas lights)

It feels like it's been so long since I've had a chance to sit down with my computer and actually think about what is going on lately.  The days just slip away and sleep has been a major priority.

Abby has had many appointments these past 2 weeks.  We've gone up on the Banzel (seizure med).  Her seizures lately seem to have increased a little.  The more subtle ones are coming more frequently and she is still having many incredibly irritable days.  The VNS was also slightly adjusted.

She had her eye pressure checked this week and it was found to be several points higher than her previous check 6 months ago.  Last time it was around 24 and this week it was 33.  The doc has increased both of her eye drops and we will check it again in 6 months.  

Josiah is his usual helpful, fun, self; chatting all day long and finding any excuse to stay up late.  Last night Abby was lying in bed fussing loudly.  I went in to snuggle with her and try to settle her down, all the while listening to J talk.  

At one point he asked me: "mom, when Abby gets big and becomes a walking girl, will she play with me?"   My heart just melted.  We've had many moments like these lately as he is slowly figuring Abby out.  He even explains to other people that Abby is blind and she needs help playing with toys.  It brings on such a mixture of emotions for me.  I'm so proud of him, but often times I find myself fighting back tears as I try to explain things to him.  

(Abby and Levi cuddling)

Lately as we seem to hop from one appointment to the next, we are able to interact with all kinds of children.  Some of them have more obvious challenges than others.  Josiah has decided that ALL children with special needs must be blind, like Abby.  He tells me so when he sees them.  I've had to explain to him quietly several times that these children are not blind but have other issues.  He promptly corrects me and tells me that, yes, they are indeed blind.

I suppose he has formed his own definitions.  

Levi.  What a joy.  Every moment I get to hold him during the day I feel my heart give a sigh of relief.  In those precious moments I think a weight is lifted.  His chubby soft cheeks are so yummy to kiss.  I find myself becoming an absolute goof ball trying to get him to giggle.  He is so happy and so generous with his smiles.

Most nights he is sleeping until 4 am, and some nights later.  I'm really thankful for the extra rest... it changes a person.   I get scary when I'm deprived!

This week our family is gearing up for a week of vacation in Florida!  We can't wait.  It's going to be a nice break from the daily grind.

Friday, October 9, 2009

little gym

Josiah has started gymnastics at the little gym!  These were taken at his first class last week.  He loves it!

This year he has become much more aware (and sometimes annoyed) of all the attention Abby gets through her therapies/dr. appointments.  It has been a challenge trying to keep him occupied during the sessions without making him feel left out.  There are just too many appointments to simply ignore him. 

 We try to make plenty of effort to include him in taking care of Abby.  He likes being our big helper!  I'm always a little surprised at the things he is willing to do for her.  If her feeding pump beeps, he will announce "don't worry mom, I'll fix it."  And sometimes he actually does!

One way to give him special time alone and to get some energy out is through this fun class.  We think one of us will take him to his class and leave the others at home, so that this will be time set aside just for him.

He really does have a good attitude most of the time learning to share mommy/time with Abby.  I think he has a basic understanding that she needs extra from us.  

It's not about fairness, but more trying to be intentional about building his little spirit up and giving him a break from the routine.

Wednesday, October 7, 2009


Last night Levi slept from 7 pm until 6 am this morning!!  Yippee!  We both got up to check on him a few times because...

     any other night this week might look like this:

up and eating @ 6 pm
down @7
up and eating @7:30
down @8:30
up and eating @ 10 
down @ 11
up and eating @ 3 am
down @ 3:30
up and eating @ 7 

Levi is now 3 months old and such a joy!  Smiling and starting to giggle, he lifts our spirits so much every day.  I don't think there is anything more beautiful than a baby's smile.

Looking forward to more sleep!