Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Monday, August 15, 2011

The Neck Fart!

video

I think I've mentioned before that Joel's trach stoma is still open.  It was supposed to close on it's own and didn't.  With three other siblings, and that sound coming from his neck, it was bound to create some interesting moments around the house.  It never fails that most of these happen around meal time. :)  I love my funny kids....we'll work more on manners after the closure!

Whatever It Takes.



Adam and I joke about this quote from a (raunchy) movie that we love.  "Nothin' brings out the flavor of a steak like some Ketch-uuuuup."  And after Joel rejected cheesy scrambled eggs two days in a row, I opened the refrigerator door and looked to see what I could combine with them to make him eat his breakfast.  Ta-da!  The ketchup worked it's magic, and now he's eating and entire scrambled egg in the morning.  AWESOME!  This afternoon I cut up some avocado, which he usually loves, and he snubbed his nose to it.  Tried my latest trick and added ketchup, and he ate them! :)

Thursday, August 11, 2011

The Specks are Back!

Two more appointments down in Portland yesterday.  #1:  The long awaited swallow study.  Joel's been eating for quite some time now, but he needed the swallow study done at some point, and definitely before professional feeding therapy is telling us to give him food regularly by mouth.  He did great.  After a brief battle with radiology about how toddlers work. :)  He immediately refused the toddler chair (duh) and needed to be sitting on my lap.  So we did that.  And then the speech therapist couldn't put anything in his mouth....he had to do it on his own.  We let him have his way on all accounts, and were able to get a good recording of what his swallow looks like.  We were passed to go ahead with feeding him like a normal kid.  YES!

#2: EYES.  Met with Dr. Bock about Joel's eye surgery and a basic eval, which we were expecting.  What we weren't expecting was to be told that Joel has astigmatism....so the glasses are back :)  It's going to be tough to convince him to keep them on his head. Hopefully we'll keep consistent in it and he'll get used to them.  We talked about surgery, and someone will be calling me the beginning of next week to set that up.  I'm so ready for this to be over with.  Until then, I'll be waiting for little guy to get his glasses!  Pics coming soon....

Wednesday, August 3, 2011

I've got joy, joy, joy, joy....

I know I've said this a hundred times, but I don't care.  I'll say it again.  God is so good.  And he knows me so well.  Things have been so tough trying to get our resources lined up for feeding, finances have fallen through the floor in more ways than one...  and not that our set up here isn't completely from God, but it's still tough.  It's tough being 28, having four kids, and living with your parents, regardless of how wonderful and willing they are to have you under their roof. 

I met Debbie today, an RN from the health department.  She came to our home to visit with Joel and I about our feeding regimen.  That in itself was a dream come true.  So much has changed since we last saw dietary, and we really needed guidance there.  That's not all she did.  She managed our WIC care, talked with us about SSI and OHP benefits, and alerted us to things that we qualify for/aren't taking advantage of.  She was awesome.  She talked with us about what Joel is currently eating, gave us new goals, and wants to see us again in a week.  I love her.

What a faithful God we serve, that we get help when we ask for it.  Debbie was the person I needed to talk to today.  She lifted my spirits when I needed them lifted most.  <3

Monday, August 1, 2011

Mommies, I need your help!

Help me get creative.  Joel's refusing all food right now that isn't a "finger" food.  He just started eating graham crackers (he can chew), but he can't chew hard things yet.  We really need to get him eating things with calories.  He's tired of eating puffs and cheerios.  Can you help me come up with some new ideas for foods that are safe for babies to eat?  The higher the calorie content, the better.  He has difficulty swallowing things that are hard to manipulate, and he gags easily.

HELP!