EIGHT MONTHS OLD!

Hi, everyone! I’m eight months old today! I thought long and hard about how to celebrate!

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After much deliberation, I decided to treat myself to a baff and a new hairdo!

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How do I look?

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I think it makes me look kind of TOUGH!!!

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Oh, blahhh! It’s not like it’s permanent!

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See? I rinsed it out, had some milks…

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… and then I scheduled in a therapeutic rest session with pine aromatherapy.

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I felt so happy and well rested when I woke up!

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I’ve decided I kinda like being a baby!

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These people make me laugh with kissies and raspberries on my cheeks. They are sooooo funny!

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It got me thinking… I wonder what I’m going to do for my NINE MONTH birthday.

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Hmmmm…

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Prayers are with families and community of Newtown, Connecticut.

For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (2 Corinthians 1:5 NIV)

Searching for Peace and Goodness

Turn away from evil and do good. Search for peace, and work to maintain it.
The eyes of the Lord watch over those who do right; his ears are open to their cries for help.
But the Lord turns his face against those who do evil; he will erase their memory from the earth.
The Lord hears his people when they call to him for help. He rescues them from all their troubles.
The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.

The righteous person faces many troubles, but the Lord comes to the rescue each time.
For the Lord protects the bones of the righteous; not one of them is broken!
Calamity will surely overtake the wicked, and those who hate the righteous will be punished.
But the Lord will redeem those who serve him.
No one who takes refuge in him will be condemned.
(Psalms 34:14-22 NLT)

I hope you find as much comfort in those words as I do. It’s been a bleak couple of past days. There is such a focus on the evil and trash in this world through the media. It’s easy to generalize about the world as a whole, perceiving that it is all evil, thereby giving up on it, or even worse, assuming this is all just normal. Let’s not fall prey to that mentality. Search for peace, in a time when you might really have to look hard for it.

This evening I was given a beautiful reminder that there IS indeed still goodness out there. Today was the first day of the bone marrow drive to find a match for Sharon Gerdes who is battling Myelodysplastic Syndrome. They were told that 250 people would be a good turn out. Would you like to know how many people showed up today? How about 728. Seven. Hundred. And. Twenty-eight. 728!!! How crazy cool is that? It was also mentioned to me that a couple who follows this blog drove all the way here from Indianapolis to get registered. I’m not sure who you are, but I thank you from the bottom of my heart for restoring my hope today. Also to those of you who are too far out of town to make the drive who ordered kits online. You are awesome! Thank you for going above and beyond past what anyone would expect. And of course a huge thank you to ALL of you who went out there today. I wish I could give you all a great big hug!! This world needs these random and intentional acts of love and kindness to thwart the steady demoralization of our world. You are definitely working to maintain the peace and goodness. Thank you! {Just as a side note, the bone marrow drive is going on again tomorrow from 8 am – 1 pm at St. Agnes Church in Ft. Wright, KY.}

And now for some more smiles, here’s this sweeeet stinkin’ baby:

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Love and blessings!

Depravity

I really don’t even know what to say. Since I turned on the TV around 1 o’clock this afternoon I’ve felt like my insides have been torn out and dragged across concrete. I have no answers, no explanations. I am numb beneath the deep sorrow that has blanketed the entire country. The “most wonderful time of the year” has turned into an unthinkable, senseless tragedy that has left a gash of searing pain where there should be hope and joy. I can’t even begin to imagine what these families are going through.

There are all sorts of speculations as to how and why someone would unleash such a heinous act of depravity on innocent people, most of them young children. Everything from a mental illness to violent video games is being suggested. Whatever the cause, be it biological or environmental, it was authored and manifested by pure evil.

I sat there in my living room this afternoon “ugly crying” asking, “WHY??!!!” But whatever is eventually concluded about this disturbed individual will never bring peace or closure. Only God can do that. Despite Satan’s disgusting attempt to destroy “the season to be jolly” God CAN and WILL make beauty from this. Already people, myself included, are acknowledging the appreciation and love they have for their families. Kids are being hugged a little tighter and cuddled a little longer. Bed time shenanigans are suddenly trivial and inconsequential.

Evil exists. It is very real and very serious. Satan is not merely a silly Saturday Night Live satyr to be casually laughed at or an imaginary characterization of my bad thoughts that sits on my bedside. It is a dangerous dark force that will creep in on the tiniest foothold if I’m not careful.
Be on guard and recognize it for what it is.

Nora was my beacon of joy today in this dark world. She was so good and so happy.

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Never so happy to see this sight this afternoon:
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A final word: Be strong in the Lord and in his mighty power. Put on all of God’s armor so that you will be able to stand firm against all strategies of the devil. For we are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places. Therefore, put on every piece of God’s armor so you will be able to resist the enemy in the time of evil. Then after the battle you will still be standing firm. Stand your ground, putting on the belt of truth and the body armor of God’s righteousness. For shoes, put on the peace that comes from the Good News so that you will be fully prepared. In addition to all of these, hold up the shield of faith to stop the fiery arrows of the devil. Put on salvation as your helmet, and take the sword of the Spirit, which is the word of God. Pray in the Spirit at all times and on every occasion. Stay alert and be persistent in your prayers for all believers everywhere. (Ephesians 6:10-18 NLT)

So Much Better

Hearing that sweet baby’s squeals makes my heart sprout wings, nearly taking off out of my chest!

Nora has done so much better today! No more pukes and very minimal boogie extractions.

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Good morning!

A regularly scheduled baff was in order just to start things off right!

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After we’d been in for about an hour I decided to lay Nora down on my chest to work on her neck muscles / head control. She’s actually getting really good at holding her head up for extended periods of time! After a couple of minutes she gently put her little head down on my chest, her sweet eyes just wandering around the room. It was a sweet moment that I was expecting to be over in a matter of seconds. I smiled down at her, pouring warm water over her exposed little back and hiney. Her eyes grew heavier and heavier and the next thing I knew, she was sound asleep on me!! She’s never fallen asleep on me in the tub!! After I successfully dismissed Satan’s attempts of persuading me that maybe something is wrong (??!!!) I was able to bask in this euphoric occasion. Tears of joy ran down my cheeks. I continued to pour warm water over her until about an hour later when the water started to get cold.

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This was one of those sweet, precious things that I will remember forever! Sadly, we had to get out, but nap time resumed once we got back downstairs.

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I was able to get out for a little bit this afternoon since my Mom was coming over to get her Nornor-fix. Cute pictures from Nana:

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Nora is adept in communicating to us what she wants. She puts in orders for milkies, she lets us know when she’s happy about things, and she also lets us know when she NEEEEEEDS a baff, even if she’s already had 2 that day! She tends to be a little dramatic and knows when to really pour it on. We think she’ll probably be an actress someday so we’re gonna go on ahead and register her with Actorwebs.com.

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😉

I’m so so so thankful for a good day. It even ended beautifully.

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Thank God for this gift too wonderful for words! (2 Corinthians 9:15 NLT)

Part II

I also want to make mention of something very important to a special family whose lives became intertwined after a “chance” meeting in the grocery store. Suzie recognized me from the blog in the freezer aisle and introduced herself. After I mentioned our sweet exchange on the blog that night, it was figured out that her sister (and sister’s husband) are good friends of my parents! Small world it is! A few weeks later I met Suzie’s sister Sharon at my sister Emily’s wedding which is where she excitedly explained the connection to me. How awesome that so many of these connections are being made that otherwise might not have been but for Nora.

I was shocked when literally a few days later my Mom called to tell me that Sharon had been suddenly diagnosed with Myelodysplastic Syndrome. I was very shocked to hear the news and immediately put in a prayer request for her at my Bible study.

I’ve been in touch with Suzie over Facebook. She was also the one who so thoughtfully hand-delivered a stuffed animal kitty cat to Greta the afternoon that Patches went to heaven. In talking with Suzie that afternoon she shared with me how desperately and urgently her sister needs a bone marrow transplant. She said she feels so helpless in all of this after it was determined that she was not a match to literally save her sister’s life by being a donor.

In a recent message from Suzie she informed me of a bone marrow drive taking place this weekend at St. Agnes Church in Northern Kentucky. It’s purpose is to find a match for Sharon. I had to make mention of this on here to get the word out in the hopes that you can find it in your heart to go do this! It only requires a cheek swab and a couple minutes of your time. I definitely plan on going!

Here is more information:

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If you are not able to do this, I ask that you please pray that a donor is found quickly and for Sharon’s healing. Please pray for her and her family’s peace of mind. May they experience joy amidst their struggle and fully feel their security in Christ.

“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.”(Matthew 6:34 NLT)

Santa Claus Came to Town!

It was a much better day today despite a bit of a rough morning. Nora has only puked once – but of course it was immediately after I’d just bathed her, lotioned her up and got her dressed. She was in a good mood so I left her on my bed while I speed-showered. When I got out I discovered the puke-tastrophe. It was all in the back of her hair, in her ears, all over her clothes, her robe, her blanket, and it leaked through to the comforter. Back to the baffs! Then the laundry commenced.

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Fortunately this did not set the tone for the rest of the day. Nora took a nice long nap and I was actually able to get some things done!

We had a very, very special visitor this evening! We were in the living room when suddenly the doorbell rang. We all looked at each other wondering who it could be while Gavin ran to go see for himself. I knew right away when I head the sleigh bells and the “Ho Ho Ho!” that this was no ordinary visitor! We thought for a second that it was our good friend Brian W. coming to trick us again! Nope. Not this time! This was the real deal! Santa Claus, himself came to visit us! He had heard all about Nora and had to see for himself what a sweet little miracle she is! He also knew that we couldn’t make it out to see him, so he came to us! I was so worried we wouldn’t be able to get a picture with him this year, but we did!!

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It was a very, very exciting night to say the least!! Thank you sooooooo much, Santa for thinking about us and for making a special trip out to see us! You are awesome!!

Beside our visit from Santa this evening, Gavin and Greta (and now Nora’s) elf Raphael paid a visit to the house while the big kids were at school! I was downstairs with Nora when I heard the vacuum cleaner turn on upstairs. I put Nora in her bouncy seat and ran upstairs to see what in the world was going on!!?? I didn’t see anything except two really, really clean bedrooms and a sparkling clean bathroom! I knew right away that it was that crazy little elf when I saw Gavin and Greta’s miniature Christmas trees set up in their rooms! Raphael sure works FAST and efficient! I was just upstairs 5 minutes prior and everything was a big fat mess! I think I need some cleaning tips from this elf!!

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“No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” (1 Corinthians 2:9 NLT)

Reassured Assurance

One of the questions we are always asked when we visit the cardiologist is, “Does she tolerate feeds without spitting up?” That being one of the many symptoms of congestive heart failure. Of course with my other kids, they puked constantly and consistently which explains the bins of ruined baby clothes that can’t be lent out to anyone. Nora just doesn’t do that. Ever. She had spit up just a little bit in the 2 previous days, but nothing like today. Prior to today I just chalked it up to mucus drainage upsetting her belly. When she started spitting up (to put it politely) with every single bottle today, my heart began racing and my thoughts amok.

An after-hours trip to the pediatrician alleviated our fears. The puking was NOT related to her heart. (Of course there were the 3 birds on a wire as we were walking in.) Her heart sounds normal for her and her lungs are crystal clear. It seems that she has a touch of whatever is going around on top of her cold.

Not that I necessarily expected the puking to stop just because we went to the doctor, but it was unsettling to have her do it again when we got home.

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ANNABEL

I’ve been so saddened to hear of the passing of one of the little rock stars in the trisomy 18 community. Annabel Leigh at 3 years old was one of the many sweet children that have given me such hope over this past year. Annabel beat the odds year after year, her BEAUTIFUL smile daring anyone to question her quality of life. Of course any parent of a baby with t18, myself included, is beyond grateful for what ever time we are granted with our children even when they are born still. I never dared to dream that we’d be here 8 months later celebrating Nora’s first Christmas. Annabel’s parents were faced with the same set of statistics. Of course they are so lucky to have had those 3 years with her, but is there ever really a “good” time to say goodbye to a child!!?? No!! There is not. I don’t care if that “baby” is 50 years old. I can’t even imagine. My prayers are with Annabel’s family and friends, that they may be granted peace, that they are blessed and comforted amidst this saddest of times. Heaven sure received a beautiful little angel yesterday.

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This morning I had one of those moments when I felt God’s voice so clearly that it may as well have been audible. I will preface that with the scripture that I used for yesterday’s post:

Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. (Hebrews 11:1 NLT)

I chose that verse so “randomly” that I may as well have opened up to any given page of the Bible and blindly pointed my finger to a spot on the page. The only reason I didn’t do that is because I obtained it from the digital version of the Bible on my phone — but same idea. I found it, I liked it lots, so I pasted it into my post, and goodnight.

Imagine the chills that gripped me when I read today’s Jesus Calling this morning and I encountered the exact same verse. Of the 31,240 verses in the Bible (give or take, depending on which version you’re using), you mean to tell me I chose the exact one that would be the featured verse and featured topic in my devotional the next day??? Skeptically one could argue that I looked ahead, but I sure as Shinola know that I did not! That was God saying to me, “I really want you to know this and I really want to make sure you don’t forget this. I love you enough to show you again incase it didn’t sink in the first time.”

Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. (Hebrews 11:1 NLT)

Reassured about the assurance about the things I can’t see. Wow! How ’bout that??

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Appropriate sign as you turn into the pediatrician’s parking lot:

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Monday

Never has it felt so good to put my head down on my pillow as it does right now! Late night Christmas and grocery shopping has rendered me completely useless.

Nornor was a little fussy today, but nothing like yesterday evening. The cold still lingers on but who ISN’T fussy when they have a cold? Our nurse stopped by this afternoon for a quick listen of Nora’s lungs and they are clear! That’s always such a relief!

Here are pictures from today:

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Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. (Hebrews 11:1 NLT)

Crank

It’s going on midnight and Little Miss has finally dozed off. She was in rare, terribly unhappy form this evening which evolved into a series of dirty diapers and “shark” infested baff waters. Poor girl was full of stinkies!

I have no idea how long she’s going to stay asleep, so I’d better quickly follow suit or I might get nothin’.

Here are pictures from this weekend:

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One of Santa’s helpers came to babysit Nornor while we went up to our neighbor’s annual Christmas soirée! Gavin figured out right away that he wasn’t really Santa!

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No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord. (Romans 8:39 NLT)

Ornamentalist

I’m exhausted from a long day of Fuss Management. I also hung, what seemed to be, about 3 billion ornaments on the tree tonight which constituted just as many trips up and down {what seemed to be} a 50 foot ladder. ALMOST finished. 1 billion more to go!

Here are some pictures from today.

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Nora’s cold is still lingering, but it’s not giving her nearly as much problems as her gassy belly. She’s only appeased by baffs and bouncing on the exercise ball. We splurged on a Mamaroo chair for her which doesn’t really seem to have the desired effect we were hoping for. It’s not really a swing, and not really a bouncy seat, but it is designed to mimic human movement with bouncing and swaying. The settings are called: Car ride, Kangaroo, Tree Swing, and Ocean Wave. You can even plug your mobile device in to play through its speakers. Maybe it’s the ACDC that she’s having trouble relaxing to. She has to know that it’s a long way to the top if she wants to rock and roll. (ACDC lyric for those unfamiliar) 😉 — Yes, I’m kidding.

Goodnight!

Oh, by the way, thank you for the tips on photo editing apps!!!! Exactly what I was looking for! 🙂