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Monday, August 30, 2010

How will I ever survive...

...without my TV?!


Okay, I'm sure you all expected totally different content here.

A friend challenged his readers to turn off the TV for 30 days, as his pastor challenged his congregation, and I'm joining in.  I know right now a certain member of my household will insist on daily TV time.  I would just leave the room, but then I might not see him!  So I'll commit to turning off the TV during the day.  I predict it will still make a big difference in my life!

For a long time, I've been saying we should get rid of the TV or at least cover it with a blanket and just reserve it for family movie time or other special viewing.  Let's just say my idea has been blackballed by the other voting member in our family.

I was doing a good job of not turning it on during the day, but I've fallen into bad habits again.  I need to retrain my brain to expect, accept and enjoy silence rather than require constant noise and distraction.  I know this challenge will benefit me, but I feel it will benefit my kids even more.  Ellie now expects the TV to be on and puts in her requests as soon as she's in front of it.  She really gets upset when I say no!

Now, I might miss NCIS (okay, I WILL miss NCIS), and we'll miss Caillou and Rosie (and Rexy!), but I think we'll pull through.  This will make my hours of pumping a little dryer, but maybe God will have a chance to call me without the TV blocking the line!

Thursday, August 26, 2010

Mikey Update 8/26/10

Mikey is doing well with physical and occupational therapy.  He's still reluctant to bear weight with his upper body, but he's working on pushing up into a sit, pushing up onto hands and knees, standing and catching himself when he falls.  These are all incredible feats considering his history.  We did find one tool that seemed to make a big difference: Kinesio tape.  It's special tape that gives the muscles a constant cue, so when the body needs the muscle to work, it's already cued to flex.

Feeding therapy is not helpful, though Mikey is taking strides thanks to our work at home.  All the therapist does is have Mikey play with dish-soap bubbles and toys.  She won't even acknowledge my concerns about how his tongue moves.  We've been working on giving him different foods at home.  So far he loves anything raspberry, he gets very excited about applesauce, and he can't get enough melted gelato.  He has good taste!  He's actually opening his mouth for the spoon now, which is a HUGE step.  He also eats Gerber puffs with a lot of enthusiastic encouragement from us.  We're not pushing him, but we're getting more aggressive.  Next stop: yogurt.

Mikey is finally eating enough milk and formula.  The gastroenterologist ordered an endoscopy to see if there was a physical reason for his inability to eat enough.  (He was throwing up if he ate anywhere near a normal amount for his age.)  My concern was his inability to digest formula.  It was just sitting in his gut.  The doctor made a comment that we should assume he'd have this problem with ALL formula, not just the one he's on.  When I told my wonderful lactation consultant his comment, a light bulb went on for her, and she realized Mikey must lack the enzymes necessary to digest formula.  Breastmilk contains its own digestive enzymes, so even if he lacked them, he wouldn't need them.  I remembered that Mikey ate more when I was alternating breastmilk and formula, and we realized we had our answer: the enzymes in the breastmilk were helping him digest the formula.  So, I now make sure I alternate breastmilk and formula, and he's eating as he should be.

Unfortunately, he's still not gaining weight like he should.  We had his routine cardiologist appointment today, and I brought up this concern.  The doctor had us do an ultrasound to check on the status of his heart and its hole.  His heart does not appear to be enlarged, though he's not convinced it's not going that direction.  The hole has not started to close.  Even though there are cells building up near the hole, they are not migrating into the hole.  Additionally, the sonographer today measured one side of the hole bigger than anyone has in the past.  No, the holes don't get bigger, but past sonographers always knew the size the hole was supposed to be before they measured it, so there was some bias involved.  This new information pushes the hole size off the fence and into the medium category.  Since the hole isn't closing, and Mikey may be symptomatic (poor weight gain and loud mouth breathing, both of which have been attributed to other things up until now), the cardiologist is recommending surgery before the end of the year.

This recommendation does not mean Mikey will for sure have the surgery, which is open-heart surgery.  The entire team needs to agree on the need and timing of the surgery.  The cardiologist feels in his gut that this surgery is necessary and that his team will agree.  He said even if the weight and breathing are not symptoms, Mikey should improve with this repair just because his heart will work better.  Before we decide on anything, though, we have some business to take care of.  We need to see a geneticist to rule out chromosomal abnormalities, one of which - chromosome 22 deficit or DiGeorge syndrome - Mike suspected based on his research, and one that I spied - chromosome 17 deficit or Smith-Magenis syndrome - on a fundraising flier in the cardiologist's office.  We also have to have a chest x-ray to measure Mikey's heart to determine if it's enlarged.  We meet with the surgeon in about a month.

Mikey is still a happy little boy.  He is making great progress with his DOC Band (cranial helmet) and should get it off before his birthday.  We're so thankful he is so happy, laughing and smiling all the time.  That helps us know we're making the right decisions.

Saturday, August 21, 2010

God slapped me upside the head again

A while back I wrote about making peace with not breastfeeding my son.  The truth is, my grief and anger come back to haunt me from time to time.  I usually allow myself to feel whatever I feel for a few minutes and then I try to remember that God will use this for His glory, somehow.

Several nights ago, the feelings gripped me and wouldn't let go.  I sat in my closet chair, hoping for another message from God.  (I'm pretty sure He was talking to me, but I was hearing the same things over and over again, and I didn't want to believe that was all He had to say.)  I cried in my closet chair, then on the floor of my closet, then in the big, comfy chair in our bedroom.  I refused to get into bed because I didn't want to associate the bed with my bad feelings and experience residual insomnia.  Mike woke me up when he came to bed, and I seemed to be over it.

A few days ago, I picked up my mom's study Bible because it was new to me.  I opened it at random (my favorite way to read the Bible) to 2 Chronicles chapters 32 and 33 and read all about kings humbling themselves.  (Okay, fine.  I do think too highly of myself at times.  That's probably why I allow myself to feel so dramatically.)  Then I flipped some pages and landed in Job, book of suffering.  How appropriate, eh?  I am always grateful that God does not allow me to be tested like Job.  I read the lesson on the page.  Even though I don't have the questions Job had about whether God cares for me, the lesson reminded me that God will use this for His glory, somehow.  The end of the lesson leads to more reading, one passage of which was Romans 8:17-18 (I included verse 16 here):

"The Spirit himself bears witness with our spirit that we are children of God, and if children, then heirs--heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him.  For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us."


"For this is a gracious thing, when, mindful of God, one endures sorrows while suffering unjustly.  For what credit is it if, when you sin and are beaten for it, you endure? But if when you do good and suffer for it you endure, this is a gracious thing in the sight of God.  For to this you have been called, because Christ also suffered for you, leaving you an example, so that you might follow in his steps."

Finally, 1 Peter 4:12-13:

"Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you.  But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed."

I need repeat reminders that my suffering, however large or small, serves a purpose, so I don't feel sorry for myself.  Isn't it so easy to feel sorry for ourselves?  It takes a true effort just to push past that urge.  Struggles like these make me so glad I know Jesus.  He gives me the strength to overcome my emotions and to keep my eyes open for how He'll use my situation.  Now, emotions are not bad.  God acknowledges our emotions but also, all throughout the Bible, reminds us that what we do with our emotions is most important.

The important part of that last thought is that the Bible reminds us what to do.  The same day that God put Job's lesson before me, the Beth Moore devotion for the day was poignant:

"The healthiest Christians you will ever meet are those who take a daily dose of God's word and choose to believe it works."

(On a side note, the back of the book reads another Beth Moore quote: "Beloved, you will never waste time in God's Word.")

So, what is the best way to handle our suffering?  Is it to get upset?  Is it to pretend like nothing is wrong?

I believe we need to acknowledge how we feel.  Suffering is not what we desire.  Still, peace and joy are what we should pursue.  The only way to find those is to live intentionally in God's word.

Saturday, August 14, 2010

Molly the Mommy

I had the priviledge, thanks to my wonderful mommy friends, of watching the birth of an owlet today live on the internet.  (Fast forward to 1:20 to see the birth.  At 1:21, the baby is wearing an eggshell hat!)

Molly and McGee are second-time parents.  Carlos and Donna Royal built an owl box in their backyard, equipped it with a camera and now give lots of their time educating and entertaining the public with the world's most famous barn owls.

I've been watching the live feed of Molly taking care of her clutch, or clutch-to-be, as it was when I first started watching her with her four eggs.  I wasn't lucky enough to see McGee or any of the feedings, as some of my friends did, but her exotic eyes and maternal instinct, and even her preening were the source of hours of enjoyment for Ellie, Mikey and me.  As a bonus, Carlos frequently came online to talk about Molly and McGee and owls in general.  I only caught a few of his talks, but I learned a lot.  I'm very grateful that I learned about this wonderful 'project' that I can share with my children.

I took two screen shots, one right before the birth, when Molly lifted up the egg to dump out the chick, and one right after, as Molly cleaned the chick.  (According to Carlos, this hatch was a very rare site we were all infinitely lucky to observe.)