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Monday, August 30, 2010

Strong-Willed Child

A few weeks ago, my brother-in-law took his boat out and Carlos, Aliyah, and Ari joined them.  Ari couldn't wait to get in the water. She has very little fear and it worries me at times. It's probably good I didn't go on this outting because I might have ruined it with my worry about them going in the water. 

Recently I've been thinking of God's awesome power, specifically in Ari's life. I've thought of all she's been through and she's been a little fighter. God has reminded me of all the tubes and wires she's been hooked up to, how tiny she was, and looking at her now ~ so strong-willed ~ I can only be thankful.  In tears the other day I thanked God for letting us keep her.

So how do we draw the boundary lines of structure and discipline...it's hard. She wants her way and will fight for her way.  Unfortunately, she wins too many times, especially with Daddy and siblings...not so much with Mommy of course ;o)  We're working on it.

I started a family blog, http://www.ourblessedblendedfamily.blogspot.com/ so soon I'll be ending this blog and will keep you updated on our family blog as to how she's doing. There's so much I want to remember and tell family and friends about our whole family, so I figured I'd start a blog for our family.  Plus, I've been so bad at updating this blog, and thought if I keep one with much more to say, maybe I'll be better at it...we'll see.

Sunday, August 22, 2010

Ari's Bronch ~ Appts and More Appts

After Ari's last bronch her ENT sent her for a sleep study. We get these results next month. She was not put to sleep with any meds (as many have thought when they see the pic), she was really tired after about an hr of getting wired...the tech was great, playing games with her throughout the whole process. He'd have her pull the wires from around his neck and he'd sing this song, "Pull and pull and pull and pull and pull" and she was cracking up pulling. So by the end, she fell asleep and although her normal squirmy/restless self, she slept all night. I slept for about an hr...I was so worried she'd pull the wires while moving around.

After her last bronch they said her airway had grown from a 3.0 after surgery to a 4.0. Now if you're keeping track of this you might have read that her airway was 6.0 after surgery: basically they perform surgery to enlarge her airway and they also stretch it while they are in there. So after all the tissue returns to it's normal state, her airway was a 3.0. It amazing me to think her airway at a yr old was between a 2.0-2.5 which they said was a newborn airway. So we Praise God for our answered prayers - her airway is growing nicely.

They also saw that her airway was irritated and red, so they assume reflux and sent us back to the GI specialist. The GI specialist is not concerned about the acid reflux because she had a 24hr probe put into her stomach a yr ago which showed no reflux. But he was concerned about her weight - she's 22 lbs and was 21 lbs last yr after surgery - so he's labeled her "failure to thrive" and referred us over to nutritionist and a feeding team. She does struggle with chewing properly and we usually don't get her go sit and eat a whole meal. She will hold food in her mouth many times until we let her spit it out, and yes we've tried it not being an option to spit food out and she will hold it in her mouth for very long period of time.
He also advised we give her 4 cans of Pediasure a day. Now we stopped giving her milk over a yr ago because of her respiratory issues and feel like it made a huge difference and decreased her asthma episodes tremendously. (Which may just be the reason she hasn't put on all the weight they think she should have) We thought we'd try slowly, gave her about 2 cans for 2 days and she had a fever by day 3...which has been her first sign of showing respiratory issues (meaning the onset of asthma). Sure enough we've dealt with a cough now for about 2 wks and giving treatments now for 3 days.
They also said her tonsils were enlarged, so we see the ENT for follow up next month and I'm assuming he'll want to take them out. So I'm feeling like it's a whole lot of appointments. We have been praying and asking God for direction on when we just stop and trust Him. He has brought our little ex-preemie through a lot and and in the end ~ God has brought her through this journey!