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.


Keri said...

Aww, Patty. I remember you saying a while back that you felt like God had provided Josiah (and now Levi) to be Abby's playmates and protectors. It's so good to see you remembering His faithfulness and to see how God is using this in Josiah's little life to mold and shape Him. I've always thought that our moving overseas was more for our children than for us - for what God would do through them because of this experience, and I think it's the same for your little boys. I'm sure Josiah and Levi will have a greater sense of compassion and understanding than most kids because of Abby. What a blessing she is! :)
We lov eyou guys.

Christy Younger said...

What sweet words! I love you precious people! Miss you so, it hurts...