Sunday, March 18, 2012

I Think It's Time for A Blog Post ...

I feel bad that it's been so long since I've posted.  It's not for lack of anything going on, that's for sure.  Let's see, where did I leave off?

Eric's birthday, I believe.

I forced asked Eric to let me take his "10th birthday" pictures.  He wasn't thrilled with the idea, but he did his best to cooperate.  He prefers to not wear his glasses - he says he looks like a "nerd" with glasses.   He's now at the age where he's concerned with how he looks and he has more input into what he wears and how his hair looks.  He cracks me up.  He doesn't like the military-style hair cut that I prefer -- short sides and back.  He wants his hair to be longer because, you know, "everyone" has their hair long.  I'll concede on not having to have super short hair, but what you see below, is as long as it's going to get!

My handsome 10 year old

The birthday party was a success and Eric's friends donated over $100 for Ryan House.  Everyone had a great time.  I heard one kid say that it was "the best birthday party" he has ever been to.  Now, I seriously doubt that, but it's nice to know the kids had fun.

The Chair of Honor

a crazy group of boys

A few days after Eric's birthday, we headed to California for some R&R.  Jack was left in the loving care of the staff at Ryan House.  I was extremely nervous about leaving Jack at Ryan House this time, not because I was worried about the care Jack would receive while we were out of town, but because something is going on with Jack and he's not been feeling well for awhile now.  With a non-communicative child, it's so incredibly difficult and frustrating to try and figure out what hurts when he can't tell you.  Jack has been having episodes of high heart rate and he acts like something hurts him - based on the expression on his face.  Sometimes his O2 sats are affected, sometimes they are not.  I don't think it has anything to do with the new vent.  I've noticed that the episodes are often triggered after he is fed.  I called his pediatrician and asked him if it might be reflux.  He wants us to get Jack's g-tube site looked at first.  If everything checks out there, then we'll see a GI doc.  My "gut" tells me that whatever is going on has something to do with Jack's gut.  We couldn't get in to see the pediatric surgeon (the doctor who manages the g-tubes in this City) until next week.  In the meantime, Jack's pediatrician prescribed Prevacid and we are giving Jack Motrin on a regular basis - which seems to help with the pain (although, too much Motrin can lead to its own set of GI issues).  The other thing we are doing is slowing down Jack's feeds and not bolusing in as much as we typically do.  He's still having episodes of high heart rate and pain, but we are managing it as best we can until we can get to the bottom of it.  Based on the reports I'm getting from Ryan House staff and my friends who have check on Jack while we are out of town, Jack continues to have his moments of high heart rate and pain, but they are managing it with Motrin.  Jack has also been sleeping more than is typical - and that worries me too.  Overall, though, he has been happy and doing well while we have been gone.  We get back home tomorrow and I'm so anxious to go get him and take him home where I know he is most comfortable.  I just hope we can get some answers soon because I can't take seeing Jack in pain and not knowing why or how I can make it better.

Despite stressing out about Jack, we tried our best to give Eric a fun vacation.  We drove up to Monterey and spent time at the Monterey Aquarium and tried to enjoy the beach.  It's been extremely cold and windy, so our beach-front vacation hasn't exactly gone as planned.  I have enjoyed getting to bed early and being able to sleep in.  I feel rested, but so ready to get home and see Jack.

This picture makes me laugh.  Eric says "I don't even know who Forrest Gump is", but if this isn't the perfect Forrest Gump face, I don't know what is! 

Bubba Gump's Restaurant at Cannery Row - Monterey, CA

At the Monterey Aquarium

Cool sea horses

and jelly fish

Freezing our butts off along the Carmel ocean front

and last but not least ....

Today is Mary's 19th Birthday!  She was not happy that we aren't home to celebrate it with her. But, I hear that my sisters and their families took her out to dinner tonight.  So, I think she still had a good time despite our absence.

Thanks for checking in and have a great week everyone!


Tammy said...

I'm glad that you are enjoying your trip. I love that area, but yes, that water can get cold!

I hope you can find some answers soon for Jack. It is so hard to figure out what is bothering them when they can't tell us!

That is so funny about Eric's hair. William (my 10 year old) is the same way. He wants it longer than I like also!

Happy Birthday to both Eric and Mary.

Have a safe trip back!

Anonymous said...

Happy Birthday to Eric and Mary! I love the pictures of Eric and his "long" hair. I'm glad you got a little get-away and were able to rest.
Keeping Jack in my prayers for comfort, no pain and some answers.


Anonymous said...

Hi Ann,

It's been a long time since we've spoken, as I hope Jack feels better soon, but with regards to Eric, "Why not allow him to try contacts?"

Matt Kamaratakis

Ann said...

Hi Matt,
Good to hear from you. Typically, they don't put kids in contacts until they are 12 years old. We might try and see if he can get in contacts sometime next year, but for now, he's stuck with glasses.


Susan said...

I hear you Ann. It's a little worrisome but it sounds like you're on to something with GI. I hope he's feeling better soon. It is so hard when they can't articulate the problem.

I'm glad Eric had a great birthday. He looks a lot different with his hair longer. Still just as handsome. Actually his hair color looks more like yours.

I think extra sleep sounds like the perfect vacation. LOL. Sad. But true.

As always, thanks for your support. I love your thoughtful comments. It means so much.

Christy said...

My heart aches for you when it comes to Jack's pain. As much as Harlie communicates, she still won't tell me anything hurts (with words or signs) or answer yes or no to the question. And I do believe they are probably a lot more tolerant to discomfort. So, when they act like something is hurting, it is probably really hurting!

I'm glad you had a good time on your trip. Your photos are great.

And Happy Birthday to Eric and Mary! I hope you get some answers about Jack's pain soon. Even when you don't hear from me - I'm always thinking of you!