Signing Time - The Quiz

Late Friday night, Andi and I engaged in a Signing Time quiz.  She probably knows about 30 signs now, although she hasn't fully mastered some of them.  I need to write down all the signs she does know, because it's difficult to conjure the list when in quiz mode. 

Attitude Adjustment

So last night, I went and spent a ridiculous amount of money to get my hair done.  I think the people in this salon make more per hour than most attorney's!  Well, it feels like that when it is time to pay the bill.  While getting highlights applied, which is like having layers of your hair painted with goo and wrapped in tinfoil -- it's very glamorous, I was updating the stylist on all things Andi.  When she was done applying the magic potion to make my hair look sun kissed, instead of water logged from all this nasty rain, she left me with some magazines while my hair processed.  When she returned to check on me, she pointed out that the only other customer in the salon was with her young daughter, and getting her hair shorn, as she has cancer.  I hadn't paid attention, as I was engrossed in flipping the pages of a magazine, something I'm rarely able to do anymore.  So, I glance, without trying to look or worse, stare.  And sure enough, all her hair is on the floor and her young daughter is sitting in the chair next to her. This lady is maybe a few days over 40, and apparently, this is her 2nd battle with cancer. We discussed whether or not we would not only cut off all our hair, but, would we bring the kid to witness it?!  It was a rather interesting discussion, and I felt that the lady took control of the situation, and bringing her kid kept her involved, and a part of the fight.  The ladies' friend arrived and gave her a big hug, they cried, and the young girl flipped through a magazine, seemingly unaffected.  They later fitted the young girl with her Mom's wig, and she played in the mirror like a kid, having fun.  They left arm in arm, with big smiles, and some incredible energy effervescing off of them.  It was contagious.  It reminded me of the young boy in the hospital riding in a wagon his parents pulled around the hospital floor, his head half shaved with a big surgery scar going across his skull, and one of the biggest smiles I've ever witnessed.  It was therapy in its purest form.  So, here's this lady fighting the big fight, taking control of the inevitable hair loss, and full of life.  It reminds me that although I worry about Andi and everything she has yet to overcome, or I worry about bills, or whatever clogs the noggin, that it is so small compared to the fights other people face.  It reminds me to savior what I have, treasure the little victories, and continue to fight for more -- all while enjoying even the hardship.  Health is something to hold in highest regard, and if you have it,  you have NO worries!  Jobs, money, if your kid is going to play the lead in the school play - it's all inconsequential if you have your health.  So, I sent out my good vibes to the lady from last night and her battle.  I drove home, hair perfectly coiffed, and checked my own attitude. I felt myself smile and adjust my appreciation for all that I have, and everyone I am lucky enough to share it with.  I remembered the friend that showed up to share a hug and tears with the lady, and it reminded me that I have several friends I don't see or talk to enough.  I need to reach out more and let them know how important they are... and most of all, I came home and gave Andi a huge hug and spent the evening praising her big crawl, sitting up (NEW!), and her pulling herself up wherever she can.  She's getting stronger, and it makes me stronger!  My attitude today is very much in check.

weigh-in

Andi weighed in yesterday, 17 lbs, 12 oz's.  Definitely an improvement!

I filled her full of malt o' meal and blended food prior to the weigh in, but still, she's heading in the right direction again!

Chubbing Up A Bean

Yesterday we went to signing group in the morning, and swimming in the evening.  We met our OT at the pool to make sure we're doing everything we can in the pool to help work her out properly.  Last night, Andi tried and enjoyed Jello for the first time.  Today, she tried and enjoyed Malt o' Meal with butter and brown sugar.  YUM.  I contacted her Pediatrician today to follow up on a few things, one being a weight check.  Shortly after I sent the request, our favorite nurse called to schedule us to come in!  So, in addition to her blended meals, we'll be offering up a lot of stuff in between.  If her weight isn't up much, then I need to start getting up in the middle of the night to give her a couple syringes of food.  It's either that, or they might suggest the overnight drip again - which would tether her to the backpack again. I seriously do not want that - so - I would rather get up throughout the night to try to give her more.  I keep thinking about how hard she works at night and suspect that is playing a role.  On a side note, I've started to notice how certain clothes are no longer fitting.  Baby girl is growing in length. Just need to pack on some girth!  It's almost lunch time, I think I'll bust out the Haagen Dazs & Nutella. 

Beano is playing with her pop-up animal toys.  Instead of pushing the buttons to "pop-up" the animals, Andi takes the whole toy and slams in on the floor, which causes several of the animals to "pop-up" at once.  It's annoying, but rather clever of her.

It's high time to start chubbing up the Bean.  Going to work on it even harder.

A Busy Week

As the Bean snores in the other room, I sit here and yawn.  It's been a busy week.  We started swimming Monday night, and will be meeting our OT there next Monday night.  My hope is to get additional ideas of what we should be doing in the pool, that maybe I hadn't thought of.  Our OT said that swimming is probably one of the best things we can do for Andi.  So, we will go every Monday and Wednesday night, as we can fit into our schedule.  We also will be going to signing group on Monday's as well.  I've noticed this week especially, that Andi has signed more and more.  She has taken on several new signs, and is using them correctly.  I keep challenging her, quizzing her, and she keeps getting things right.  Yesterday, we had a hearing test.  Andi again, tested better on hearing with the hearing aid.  She is just below 'normal', in the mild hearing loss category, with her hearing aid on.  She also is hearing lower and higher tones than previously recorded.  I purchased some swimming plugs for her, that are fitted ear molds especially for her.  We can use them in both the pool and the tub, which will be nice, because I've been very overprotective of her ears, and trying to stop every drop of water from coming anywhere near her ears.  Despite having tubes to help her ears drain, I don't want her to endure any more ear infections.  So, these plugs should help us keep water out.  I hope Andi grows up in the swimming pool like I did.  I reminded her the other night that Grandma Andy was a big time swimmer when she was young, and I was a big time swimmer when I was young, so that it is my hope that Andi enjoys swimming as much as we did.  I think she will.

I've noticed that Andi's hands and feet are growing.  This morning, I noticed how long she's grown while sitting in her bath tub.  She's grown!  Yippie!  Still hoping to pack on the pounds!

Earlier today, I stumbled onto this article.  It's a great explanation of the heart surgery Andi had when she was 13 weeks old.  Surprisingly, it doesn't read like a page out of a medical book. 

http://www.columbiasurgery.net/2012/02/24/spotlight-on-pediatric-congenital-heart-surgery-atrioventricular-canal-defect/


The kid is still snoring, and I still have much work to do.  Break time is over!  *insert yawn here!*

A Day Of Firsts!

Today we started a six week class that incorporates sign language and play-time group.  With this group, I figure Andi can work on two things, working on signing and socializing at the same time.  Hanging out with other kids also exposes her to other kids doing what she should be doing, things like sitting, walking.  Andi did well sitting in my lap and engaging.  She did a few raspberries, and wasn't too shy with others.  I bought her a stuffed banana toy, and the other kids really liked it and kept taking it.  Andi was okay sharing it.  Andi did well with her signs, as she already knew a lot of them. She did however, feel the need to pull out her hearing aid several times.  That was a lot of fun.

Auntie Juli gave her a new hat last night, therefore, she styled it to class this morning.  I was standing in front of the TV and our little TV addict was trying to see around me.

If I could get my act together, we should be getting in the car soon and going to the warm water swimming pool.  Okay, that's what it took to get my butt in-line.  We're filling out the form and heading out soon.  Andi is going to go swimming for the first time today. Oh hell, I just realized I have to put on a swimsuit.  Yuck.  Oh well, the things we do for our kids!!! 

The Week ... Of Wild Hair

Andi's seeming to finally feel better -- yippie!!!  She was super generous and gave me what she had.  TREAT!  Yesterday, I took her to the office, as my coworker is making is first trip to Hawaii.  *insert jealous coughing here.*  Anyhow, Andi wouldn't let me put her down, of course.  So, I held her on my lap while tending to things. She fell asleep.  So, I laid her down and she slept for several hours.  I fed her while she slept and when she woke, she coughed and coughed.  I picked her up and carried her into the kitchen, Andi up on my shoulder.  And then it happened, one of my biggest fears.  She puked.  She puked all over me.  She puked all over herself.  She puked on the carpet.  I grabbed some paper towels.  There were a whopping two mini-sheets left on the roll.  Andi wouldn't let me put her down.  She's upset.  I'm upset.  Lo and behold, my boss runs to the rescue and helped me.  He actually cleaned it up!  I am grateful.  Had he not been there, it would've taken me an hour to deal with all of that.  It would have been a horrid nightmare.  We went home shortly after, me covered in goo, wearing the new scent, 'banana essence!'  I swear, I should bottle it!

Today is a new day.  Andi is seemingly feeling better. She hasn't been clingy at all.  In fact, she ate an entire container of Activia yogurt today.  It took about an hour, with a 20 minute break.  But, I was pretty dang excited!!!  Big thumbs up!!  That's 120 calories she ingested by mouth.  That's huge.  Each feed I give her is supposed to be about 160 calories, so, for her to eat a majority of that by mouth is huge.  We just have to strengthen that and make her do it consistently, and quicker.  In any case, I've come to conclude that I need to sacrifice a bit more and wake up two times in the night to give her another syringe of blended food in the night.  60 ml.  If I do that, that's at least another 120 calories she'll get while she sleeps.  I think that is what it is going to take to make sure she starts packing on the pounds.  I need to do something and I don't want to tether her to her g-tube and do an overnight drip.

Lastly, I took Andi to Costco earlier this week.  She was wearing her orange hat, which drew an awful lot of compliments throughout the store.  Then we went to Kaiser Pharmacy to our bi-monthly refill of Amoxicillian.  Still wearing the hat, we got a lot more compliments, as well as a 'wild hair' statement from some kids.  Here she is before we left, blowing raspberries of course!