Tuesday, December 25, 2012

Merry Christmas!

We didn't send out Christmas cards this year again and I can not blame it on Mr Boy's surgery.  I will blame it on Mr Boy's laziness instead.  He just refused to lick the envelopes. :)

So here are some photos we probably would have picked to put on a card... now you get the best ones and the ones that may not have made it on the card. Lucky you.

Let it snow, let it snow, let it snow!

This Christmas morning:

Taking a very,very short walk in -4 degrees this morning.
My floridian parents are troopers!

And we can't mention Christmas day without talking about the reason we celebrate! Happy Birthday Jesus! Thank you for coming to earth to suffer and die and rise again so that we might have forgiveness and true life! 
Luke 2:11 For unto you is born this day in the city of David a Savior, who is Christ the Lord.
Luke 2:14 “Glory to God in the highest, and on earth peace among those with whom he is pleased!” 
John 3:16 For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.
Romans 6:23 For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord.
Romans 15:13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. 
2 Corinthians 9:15 (KJV) Thanks be unto God for his unspeakable gift.

Saturday, December 22, 2012

Blowing Expectations

Mr Boy has been doing so much better than expected in all areas, since surgery. Here are some of the lovely areas in which he is surpassing all odds:

     -He walked right away and we thought it may take him weeks to work up to it. 
     -He doesn't vomit. This is so huge! He vomited/refluxed almost every day of his life and on average, 10 times a day. His stomach was wrapped around his esophagus to prevent reflux during the surgery, so technically he shouldn't vomit, but kids are supposed to still wretch every time their bodies try to reflux, but he doesn't even do that very often. I think he is much more comfortable overall.
     -Because he isn't vomiting, I assume he is tolerating the rate at which I pump formula into his tummy, so I have been able to increase the rate faster than ever before. For nearly the first year of Mr Boy's life, he was hooked up to his pump about 20-24 hours a day so it could run slowly into him to prevent reflux. Right before the surgery Mr Boy would be hooked up 8 hours in the night and 6 hours during the day, but we've already cut the day hours down to 3, so the pump just runs the formula in really fast, and he still doesn't reflux!
     -Mr Boy is on no medications! He has been on at least 3 meds daily his whole life and we assumed this would continue forever, but now he is on none. 
     -His lungs are doing just fine breathing on their own, so Mr Boy doesn't wear the Bi-Pap mask anymore or have any breathing aids. 
     -His wound is healing very well. He had a nasty wound due to some complications with his skin around the bladder, but the skin is coming in and the wound looks much, much better.
     -Having a g-tube (port in his abdomen for the feeding tube) is so much nicer than the NG tube on his face! I was a little worried about it before surgery just because it is something new to me, but it is quite lovely.
     -His orthopedic surgeon said the pelvis is totally healed and he is so impressed that it looks as well as it does compared to how his pelvis bones looked before. He also said He is so shocked Mr Boy is doing so well right now because after the 19 hour surgery and seeing him in the hospital everyday, he thought it looked pretty intense with everything going on.

The soggy, saltless "leftovers" 

Mr Boy's Orthopedic surgeon said that he was sure Mr Boy's amazing success is all due to the team of great doctors he has, the great care he has received through surgeries, and a large amount of luck. heh, heh :)  I am happy to announce that in this instance, luck's name is Jesus.

Psalm 103

New International Version (NIV)
Praise the Lord, my soul;
    all my inmost being, praise his holy name.

Praise the Lord, my soul,

    and forget not all his benefits—

who forgives all your sins
    and heals all your diseases,
who redeems your life from the pit
    and crowns you with love and compassion,
who satisfies your desires with good things
    so that your youth is renewed like the eagle’s.
The Lord works righteousness
 and justice for all the oppressed.
He made known his ways to Moses,
    his deeds to the people of Israel:

The Lord is compassionate and gracious,

    slow to anger, abounding in love.

He will not always accuse,
    nor will he harbor his anger forever;
he does not treat us as our sins deserve
    or repay us according to our iniquities.
For as high as the heavens are above the earth,
    so great is his love for those who fear him;
as far as the east is from the west,
    so far has he removed our transgressions from us.
As a father has compassion on his children,
    so the Lord has compassion on those who fear him;
Mr Boy found my body butter and loves this new texture!

He also loves the way it splatters all over when he claps his hands... oh my, my.

Monday, December 17, 2012


We are shell shocked right now because a whirlwind of blessing just passed through our door seconds ago. We had just put Mr Boy to bed and then there was a knock at the door. The man standing before me said, "we have a gift for you." He then walked back out to his car and so began the flood of people bearing boxes full of groceries and Christmas food, pouring into our home. 10 boxes in all, if you can even wrap your mind around it. I could not and can not. It was like a dream. I don't even recall if I said, "thank you," because I was still trying to figure out what was going on and there were no words on my tongue.  Speechless. Some of them were standing at their cars, some were carrying the boxes, and still some were singing carols. I finally got enough wits about me to ask one the ladies leaving my home, "who are you guys?" I did not recognize any of them. "The Ghosts of Christmas," she replied. Strangers.

They are more full than they appear in the photos... there is more underneath.

I am still a little shaky. My heart is racing. We do not know how they know us, or how they deemed us worthy to be the beneficiaries of their love and of the overflow from their hearts.  But we are unbelievably thankful to these strangers, these "Angels of Christmas."

Matthew 6:25-34

New International Version (NIV)

Do Not Worry

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[a]?
28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Sunday, December 16, 2012

Mr. Boy's New Confidence

Mr Boy still waddles around slowly like someone who has had his pelvic bones broken and fused back together. Go figure. :) Yesterday a lady in the grocery store commented, "He must just be learning to walk." Well, re-learning, but I just smile and nod. :)

Mr Boy at the Sioux Falls Zoo

Mr. Tiger

The fun thing is that he is finally getting independent. It is strange to have a little one who will never, ever leave your side or allow you to leave his.... for 2 straight years. This past week when we were in stores, he wanted to help push the cart and would occasionally just walk away. He is 2 and has rarely even let me put him down in public, much less walk away!  And there he was in wal-mart, walking away as I said, "Mr Boy, I am going this way... bye" and he just kept on a-going in the opposite direction. And do you know, I was the proudest mommy in the store. haha. I know this is usually a bad thing and I'll be eating my words here soon, but I was just so proud and thankful that he was finally brave, confident, and comfortable enough with the crowds, to just walk away. He is not afraid anymore!!!

Making animal noises and calling the Llama's "mamma's."

We thought his crazy-long-intense surgery/hospital stay would delay him further in that department, but he is more social, confident, and happy than ever before! I think that finally being surrounded by tons of people made him comfortable with it and on some levels he liked the attention and now associates people with positive attention instead of associating people with fear and pain. Crazy, that he would come away from a hospital stay, (where he was poked and prodded all day long for a month), liking people more, but I know that's a huge testament to the power of prayer and the Mercy and Grace of the Lord.

Romans 8:28

New International Version (NIV)
28 And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose.

Sunday, December 9, 2012

2 Years Old!

Mr Boy turned 2 on November 21st! We decided to have ice cream instead of cake since he actually swallows ice cream and would only lick cake. But after one bite of ice cream, he demanded crackers. Oh well, we tried! :)

We absolutely can not believe Mr Boy is already 2. I guess that's what everyone says about their own kids, but it's true. One moment he's learning to roll over and the next he's playing with Buzz Lightyear and Woody action figures. It's mind-boggling to say the least. We've been so blessed to have him in our lives and don't know how God decided to entrust us with this little boy to love and watch over, but we are so grateful. 

We went to Toys R Us to get some last minute gifts for Mr Boy before his birthday (just 5 weeks after surgery and before he was walking on his own) and the train set got him excited enough to stand on his own for the first time.

Playing with Aunt Holly

Playing with Mommy

Saturday, December 1, 2012

Walking once again!!!

Mr Boy walked for the first time since surgery just two days ago (over 6 weeks after surgery)!!! We would never have guessed he would walk so soon, much less recover so quickly. It is amazing!

I will post a birthday update soon. Mr Boy's 2nd birthday was November 21st, but I am having trouble uploading photos, so I will update as soon as I can!

Sunday, November 25, 2012

Over the Hump

This afternoon was the first time Mr Boy, David and I have been alone together in 6 weeks. The first 5 weeks were the hospital where you are NEVER alone. I don't care if there is no one in the room with you... you are not alone... glass doors and a nurses' peep window ensure it.  And this past week my family was here and don't get me wrong, it was AWESOME. We loved it. I'm just saying it's crazy to think that we have not been alone for 6 weeks. There were plenty of times in the hospital when I told myself that the second I was finally alone I would scream and cry for a few hours to let it all out. I bottled up all those moments when I just needed to scream and cry, inside my heart till the moment no one would see it; the moment I was finally alone. At times I felt like I could burst. And I know David felt the same.

But the time has come. We are finally alone and we can honestly say that all the horrible, hard moments we watched Mr Boy endure are mere memories and the joy of seeing Mr Boy doing so well, has settled in. I no longer need to "let it all out," because, "it," has mostly dissipated. There are plenty of hard moments each day: Mr Boy still withdrawals, some of these medical devices need magicians to work properly, g-tubes hurt the skin and wounds leak a lot. But there is a peace about life. We have crested the "hump" which we were dreading for 2 years and are on the down-hill.

Philippians 4:7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Sunday, November 18, 2012


Mr Boy was discharged from the hospital at noon on Thursday. We were all very happy to be home! Mr Boy was a little frustrated to find he could not walk or crawl although he did try his best to do so. With all the moving around he did, he woke friday morning with the bolts on his metal fixator popped off the rods in his pelvis. We rushed to the Orthopedic surgeon's office who said, "what do you think about just taking them off?" I said, "that would be wonderful," as I stifled the urge to jump up and down and scream for joy. They took off all the nuts and bolts and unscrewed the rods from his bones right then and there, a week and a half early!

Mr Boy doesn't seem to mind wearing his BI-PAP mask to help him breath while he sleeps. He even tolerates his leggings. :) I walked into his room to talk this picture after we thought he had been sleeping for a while and I heard him yell, "cheese!"

My mom came last week to help with the transition from hospital to home, and will be here through Thanksgiving. We got home from the hospital just in time because my sister flew in Friday with my new nephew Mr D (so sad my brother-in-law Daric couldn't be here too!).  And my dad flew in today! We are thankful we will have a Thanksgiving full of family in our own home and not the hospital! 

Notre Dame, Denver Broncos and Jacksonville Jaguar Pride!

We've been truly thankful to be home and couldn't be more grateful to all of you who prayed for us and for Mr Boy through all this. He has healed so well. The wound is looking better all the time and he even crawled a few feet today! I know his strength will be back in no time and he will be walking and and functioning better than he was ever able to do before.

Wednesday, November 14, 2012

Home on the Horizon

Mr Boy should be discharged from the ICU tomorrow and we will go straight home! All day we've been getting things ready... last minute appointments made, medications ordered, supplies stocked, and instructions given on new equipment and care for Mr Boy at home. After one month and 4 days in the hospital, we are ready to go home! This past week has still been hard as Mr Boy continues to have mood swings associated with withdrawal from the pain meds, but each day is better. Mr Boy will be going home with his Bi-PAP breathing mask and machine for nightly wear, hopefully just for a few weeks till his lungs get stronger. He gets the metal rods (external fixator) which keep his pelvic bone in place, off in 2 weeks. As excited as we are to go home, we will miss all the amazing nurses we have spent so much time with along the way! :)

Mr Boy's monkey slippers as well as mommy's sock covered in stickers, serve well as bumpers for the ends of his metal external fixator.

Mr Boy was finally allowed to eat yesterday although he still won't swallow anything harder than apple sauce. He still had a ton of fun playing with his food and mostly feeding himself spoonfuls of ranch dressing!

 Enjoying the taste of mac & cheese before spitting it back out and trying to hand it to me. Swallowing solid foods is still scary for him after 2 years of vomiting many times a day.

He saw my camera and said, "cheese!"
Mr Boy loves to cuddle with daddy
and wouldn't let him move