Friday, December 20, 2013

Home 4 Weeks!

4 weeks ago today we had just arrived home.  Seems so long ago now!

A lesson I learned this week: It's much easier taking a 1 and 7 year old to the grocery with me than a 3 and 5 year old.

A lesson I'm hoping Maggie will learn soon:  We don't touch our poop!  :)

Maggie seems to be doing better as far as her infection(s) go.  Today is her last day on antibiotics for the staph infection and it looks much better.  We still don't know if that's related to the white gunk stuck in her palate-she won't let us see in there to see if it's still there. But her breath smells much better so I'm hopeful these meds have taken care of both problems.  We go back later next week to check in with the pediatrician.

We also had Ben's pre-op appointment this week and he is good to go for his surgery January 2nd. We've decided that if he's healthy that day, then we'll go ahead and get it taken care of.  We've gotten some reassurance that this is the right decision for him, as long as we can keep him healthy for the big day!  We've been told it's kind of a longer recovery, so he'll probably miss a few days of school. Hopefully in the long run he'll miss less school once those tonsils and adenoids are out.

It's officially Christmas break!  I don't know if I'm happy or sad about that. :) I did get out to help at Sam's party at school today. I left Maggie with my mom, it was the first time she has been with anyone besides Jeremy or I since we got her!  She did great, thankfully. It was nice to get away and focus just on Sam for a bit.

Maggie has made so much progress. She clearly is gaining weight, her belly is huge!  She just seems bigger and feels heavier.  She continues to devour her baby food and bottles, and continues to gag and/or refuse nearly every thing else.  She does like Puffs and yogurt melts, even the organic, sugar free kind we've switched to.  The yogurt melts have beets or something in them that makes them very red, so when it starts coming out her noise, it looks like she has a nose bleed.  She feeds herself those 2 snacks very well and I so wish she'd try something else!  We've tried everything and she absolutely refuses pretty much everything. We've tried Step 3 baby food with the chunks and she gags.  Wondering if we have feeding therapy in our future!  I know we shouldn't rush her, but oh how I'd love to give her a graham cracker to occupy her now and then!  One of the doctors we saw said she doesn't NEED to snack.  No, but I WANT her to!!!

Speaking of eating solids, we tried giving her real peas the other night.  She was actually interested in them and tried a few... and then I heard Ben yell, "Uh-oh!  She's got a pea stuck in her hole!!" Sure enough, she did. It went up in her open palate and got stuck, and was visible from her nostril.  Not a trick our other kids can do!!  It didn't bother her a bit, and it later flew out her nose on its own when she was drinking her bottle.  I've heard this is a fairly common occurrence with cleft kiddos.  We've learned to laugh about a lot of it and just go with the flow.

More concerning, though, is her refusal to drink out of a cup.  We have 2 different cleft cups we're trying and most of the time she just shakes her head and refuses to take a sip. When she does take a sip, most of it goes down the front of her.  She takes 28oz of formula a day from a bottle, which she won't be allowed to do after her surgery Feb. 6. So between now and then, we have to get her to take fluids in a different way.    No pressure!  We've been told she won't be released from the hospital after her surgery until she can take in fluids not from a bottle, so this is really important.

Otherwise, she's also got more cute tricks up her sleeves. She has learned to sign "more" and "all done".  She doesn't really use them appropriately yet, but she's getting the idea.  She loves to try to stand on her own, and always claps when she is standing without support. Which of course makes her fall, but she's so proud.  She points to everyone and mimics a lot of gestures.  She's getting braver and will crawl all over the house. She has even played in her own room with Allie for a little while!  And she continues to talk our ears off all day long.  She'll yell over her siblings to get attention!

She still has times throughout the day when she is very fussy (what I mean is screaming her head off) if not in my arms. Sometimes she wants me to STAND and hold her and do nothing else.  But when she is content on the ground, she is exploring more and really enjoying herself.  So we're getting there.  She continues to sleep great (knock on wood!).  Her absolute favorite thing to do is have everyone hang out on the floor together. She loves "tickle parties" and "wrestling" as much as her siblings do. Her least favorite thing is to have everyone get up and walk away.

Believe it or not, after those months and hours of paperwork, we have a boatload more to do.  We have a "Family Financial Advocate" at Children's Hospital helping us, as the medical bills are already rolling in. There are some options for aid, grants, etc out there, but of course that entails paperwork. Ugh.  Plus both our placement and homestudy agencies are requesting  various documents from us.  It's all very time consuming and requires brain cells and time we don't always feel like we have, but we're plugging away at it little by little.

Our kids continue strive for Maggie's love and affection. They love to play with her and help out. Today Sam told me, "I used to be shy of Maggie's tooth, but now I think she's really pretty."  LOVE IT!!

I took Maggie with me to Ben's pre-op appointment and he insisted on pushing her stroller and playing with her the entire time. He says he "works his magic" on her to keep her happy. He's always done that with Allie too.

Allie is doing a little better. She still has her moments each day of obstinance and defiance that are very trying. But she adores her sister and treats her beautifully so far. For that I am so thankful.

Thank you to everyone who continues to check in to see how we're doing!!!  Here are some recent pics:

So glad these are the only airplane rides going on for us these days!

She often kneels with her tiny little feet sticking out behind her.

Silly time with Daddy.

How cute is that ruffled bottom?

Everything around here is a group effort (whether we like it or not!).  Helping Daddy with a project:

And helping me with Christmas cards/baby announcements:

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