Happy Birthday, Treasure!

Our sweet Treasure...

Happy Birthday!

Sixteen Pounds

Today Santi had his routine checkup at Shands and as always met new people...Santi thinks that's the best part!

Today Santi is at the sixteen pound mark that we were all aiming for, and Santi's doctors are really excited at his excellent progress. In just this past week he has straightened in his top curvature 10 degrees! Wow, that's a big plus for Santi. Dr. Woo wants him to continue with the weights as he's doing so well. We will be adding one pound every other day and doctors will be supervising him with weekly x-rays and checkups.

X-ray on the left is from today, and the one on the right taken last week

Here in this picture Santi is with Loren, a high school student shadowing Dr. Woo. Dr Woo is on Santi's left.

Today Santi met Dr. Chris Bugnitz

Santi with X-ray technician Mindy

Keep Santi in your prayers. Dr. Woo told us that after the ten pound mark, Santi would encounter the harder part of halo traction.

Art Lessons, Perhaps?

Little Artist: "Mom, this is for you!"

Mom: "Oh! Nice! And who is this?"

Little Artist: "It's you, Mom!"

We will keep the little artist's name hidden for now, but we told Mom to look on the bright side, she does look a little unhinged, but at least her portrait is smiling!

The Miracle of Normalcy

There is a degree of life called NORMAL. The degree intensifies or recedes as time passes; the length of time passed also varies. “Normal” differs for each of us….what is normal for me may be abnormal for you, and yet, God created us in His image. We all have the same basic needs, but when we feel we should have more of a basic need because of selfishness, or fear, or greed, or lust, our lives become…..abnormal. Jesus said that His grace was sufficient so I’m beginning to realize that having the mind of Christ is normal.

When something “out-of- the-ordinary” happens, I become fearful just like the disciples in the boat during their trip. Jesus said they were going across, but when the tempest rose up, everyone became intensely afraid and doubted the truth…..this was just not normal. And Jesus was asleep! Now sleeping sounds very normal to me.

Sleeping during a tempest is normal…..fearing during a tempest is not.

They forgot the verse in Psalm 118: 6: “The Lord is on my side; I will not fear: what can man do unto me?” and the one is Proverbs 3: 24: “When thou liest down, thou shalt not be afraid: yea, thou shalt lie down and thy sleep shall be sweet.”

Normalcy becomes a miracle!

Pictures from this Week

Today Santi was so excited to go to church! He has been to the park down the road from our house and besides the short walks down our front side walk, this was his first outing.

Luke and Santi at the park Cilicia, Santi and Mr. Balogh
Ms. Sandy and Mr. Richard with Santi at church today

Santi with Steven at church

Good Day!

Today was Santi’s one week follow-up appointment and it was a good day! Santi was nervous and wouldn’t smile for me in the waiting room, which is very unusual, but considering what he’s been through, we do understand. He relaxed with x-rays as this is something familiar…..
The great news is that the x-rays showed an improvement in the curvature already! One curve that measured 99.8 degrees now measures 93.7 after only one week of traction. I thought it was pretty amazing and Dr. Hanff was also very pleased. Dr. Hanff is pictured below with Santi after a brief talk with us…he is assisting Dr. Woo on this case and we like him very much…….

Dr. Stephen Hanff and Santi

A surprise addition to our good day was being able to see an old friend….Gary. We grabbed a picture with him also after we needed to pick up a five-pound weight at the hospital. Gary constructed Santi’s Risser cast several years ago. We became immediate friends and he, one of Santi’s favorite people at Shands.

Santi and Mr. Gary (Cast Technician)

God is answering many prayers for Santi. Thank you for joining us!
~Ana~

Dwelling in Heaven

I recently studied patience. I even spoke about it in a talk to ladies at a Family Life Conference. I probably sounded very knowledgeable about it and maybe as if I was a very patient person….like I had it all together in the patience department. Shortly after that conference, I was tested and failed the test of patience.

The 3 main things I learned about patience were:

• Jesus loves me enough to allow the trial.
  


• The darker the trial, the brighter the testimony, and
  


• Hope is a key to understanding patience.

Hope……
Not “Oh, I hope this doesn’t last long.”
Not “Oh, I hope I’ll get married after all.”
Not “Oh, I hope this doesn’t leave a scar.”
Not, “Oh, I hope we don’t go bankrupt.”
Not, “Oh, I hope I’m completely healed.”
Not, “Oh, I hope I have a baby.”

Our hope is in heaven! Our hope is in the Lord! Our hope is eternal, not temporal….no matter what the physical outcome of the trial is, our hope is in heaven!

Santi is a picture of hopeful patience to me. I thought about how I would handle his situation: seven screws in my head and having to rely on the help of others just to go the bathroom….sitting all day long in one chair…..sleeping all night long without the luxury of turning over. Oh my.

Santi doesn’t talk about heaven, but he dwells there……………

Mom

Looking Back...

As Cilicia said, one week ago our family was facing two family surgeries. Since we didn't post any pictures of Santi coming home, we thought we would post now in celebration...one week later!

There he is!

Daddy and Santi

Mom and Santi sharing a good laugh...

Our wonderful parents who love

us to the moon and back...

Out you go!

Santi, more than ready to go!

Mom...

Samuel likes the halo!

Parade procession up to the house...

(Notice the "welcome home" drawings and doodles of little hands

on the sidewalk? Our whole driveway was covered in chalk! =)

And into the house!

Hugs for everyone...

Jon-Michael...

Laughing all together again...

Home, the best place to be!

Scripture on an Envelope

Today marks a week to the day that Santi and I went up to Shands to have surgery. Both of us are so thankful to all who prayed, and continue to pray for us. God is good and we’re both doing really great! As I write, Santi is singing at the top of his lungs, filling the house with a cheerful tune…what a blessing and a joy to all of us, knowing that it’s not a painless task to now have eight pounds of weight hooked to his wheelchair. God is certainly answering your prayers, God is giving Santi the power and the grace to go through this tough time in his young life.


Tomorrow Santi will be going up to Shands for a follow-up appointment. X-rays of Santi with the weights hooked up will give the doctors clear direction of where Santi is and where he should be.


Again thank you for all the encouragement to our whole family, God has used all the cards and scriptures as a true source of encouragement. Last Monday as we were sitting, waiting to hear about Santi and about an hour before my own surgery, I began to feel uncertain….fearful. At this time I remembered that I had tucked away a little envelope from a little friend from church. Some verses of scripture were written on that envelope. Reaching into my backpack, I found… “For God hath not given you (me) a mind of fear…”. I’m so thankful to the Lord for using scripture on an envelope!

Happy Birthday

Listen to Santi sing happy birthday to his sister, Olivia!

Happy Bithday, Olivia!

Kristine and McKenzie

One of Santi's sweet nurses, Kristine.

Santi and Dr. McKenzie...his first day

as a resident at Shands.

This nurse and Dr. helped Santi with his new

wheelchair and adding weights to the halo.

Here is Santi's new wheelchair! You can also see the weights that are attached to his halo. Every other day we add one more pound, until we reach 16 pounds.

Everyone that came in Santi's room was such a cheerleader, always positive always cheerful. We are so grateful for the Kristine's and McKenzie's out there.

My Sister

Cilicia and Santi seeing each other for

the first time in two days

Cilicia and Dad just before leaving the hospital

When Cilicia came home, I left the camera with Dad and Santi, so we are just now able to post more pictures!

Some have asked about Cilicia. Cilicia is doing well, she just wasn't so picture happy as Santi after surgery. =) She was smiling for a few reasons in these pictures..one, she had just had morphine, and two, she was going home!

We are so glad she is home. It just isn't the same without her!

Welcome home, my sister, my friend...

Confounding the Mighty

Anita has done such a marvelous job of blogging and keeping all of our dear family and friends updated on happenings here at the Hurons! I am giving her a much deserved break today and will attempt to relate the latest so that you may share our hearts and view of this side of Heaven…….

What a joy it was to bring Santi home this morning! When Anita and I arrived in the van, he and Daddy were waiting outside of the front doors. We loaded the van with a futon, a nice fluffy feather mattress and piles of pillows. I had a feeling Santi wanted to ride up front instead of lying down and I was right. He relished the outdoors, but began nodding after a while. He was able to lie down and had a good nap for the remainder of the ride home.

He seems to require so little pain medication…..it makes me think of the verse in I Corinthians one….verse 27: “For God hath chosen the foolish things of the world to confound the wise; and God hath chosen the weak things of the world to confound the things which are mighty….that no flesh should glory in his presence.”

Santi is confounding! His strength comes from his weakness….and God has chosen him to remind us (the mighty ones?) that bravery and health and intelligence and…..(you fill in your “good” thing) is really nothing.

I accidentally bumped his halo as we were transferring him to the bed and he quietly said, “Ow”. I felt so terrible. The first thing he wanted to do when we wheeled him into the house was ride around and visit Cilicia in her room. After his visit, we realized we were late on his next med dose. He didn’t want to take any, but we knew we had better keep the schedule……confounding…..

Now for some technical talk: Santi’s halo is attached to his skull with 7 screws….quite large ones. They make me squeamish. This morning just before discharge from the hospital, a doctor had to “torque” them all. This made my husband squeamish. When Santi is seated in the wheelchair, weights are attached to a pulley running from the top of the halo down behind the chair. He is now pulling 6 pounds; we are to add one pound every other day until we reach the maximum pull of 16 pounds! Try sitting up with 3 bags of sugar plus one pound pulling off the top of your head….it hurts…..

Now we must take Santi back to Shands once per week for x-rays of his neck to make sure the traction is adequate….that is, not too little and not too strong. We are very thankful for the wheelchair and that he is actually able to go to church and other selective outings…..we are being especially careful just now to protect him and the rest of us from an apparent flu bug. We will be home-bodies for a while…..

Again, thank you for praying for Santi and for your notes of love. He really loves hearing the blog comments. He is able to be wheeled up to a computer and play with the word processor….he loves to spell the names of our family members. After this week, I will resume his phonics lessons and continue with as much normalcy as we can.

Cilicia is doing well, though moving slowly. Nausea is still a problem and so she is not her usual perky self. Continue to pray for her healing and physical nourishment. She turned down my yummy chicken soup! This reminds me to thank all of you for the meals coming to our house! What a blessing! The cooking staff around here has been delegated to round the clock nursing and so they appreciate the break…..

Are you mighty or weak? Are you base or despised We glory in the Lord!

Thoughts from Ana a.k.a. “Mama”

Home Again, Home Again...

This morning began with great uncertainty as to whether Cilicia would be able to come home today, but she began to feel better after the nurses figured out what pain medications worked and brought the most relief. Again, we were blessed with great nurses, and they were so encouraging with the walking that had to be done before she could be discharged. I know it wasn't an easy morning for Cilicia, but she was strong and determined...she wanted to go home....and home she is!

When she was wheeled to the front of the hospital and Dad came to pick her up in the truck, a man passed that we had seen yesterday waiting like we were in the waiting room and hallways, and he gave us a, "Great! You get to go home" kind of send off before going back inside. It was another great, "be blessed" sort of going away.

Cilicia is resting and just so happy to be home. All the family was waiting in the driveway to greet us and see the "patient". What a happy time.

She still needs prayer for continued healing and strength as these next few days she will feel sore.

As happy as we are that Cilicia is home, we must remember Santi too. There were tears as he realized that Cilicia was going home without him, but then he perked up when Cilicia said she would call him on the phone tonight. Today has been a little difficult for Santi as his neck is very sore and he seems more uncomfortable with the halo. Please pray that Daddy and Santi will be safe and encouraged tonight as they spend another day at Shands. There aren't any promises, but he may be able to come home tomorrow....we shall see...

A New Morning

Santi looking at a gift some Shands volunteers gave him

Santi and Anita



Shands
11:13 am

Cilicia and Santi and talking together on the phone right now. Maybe, once Santi get's to take a ride in his new wheelchair, he can go see Cilicia!

I'll post pictures later of his new wheelchair. For now he is resting as his neck is especially painful as it is being stretched. He is also on his back, which is very different for him as he felt more comfortable on his side, due to his back. Keep praying as everything is starting to feel sore. It's just another chapter in the Santi book. =)

Thanks for the comments that were left...I read them to Santi this morning and read them to Cilicia about 3 in the morning after a nurse had come in. You thoughts and prayers are a great encouragement to them.

I'm Hungry Too

Picture of the day...

Yumm...

While in the waiting room yesterday, I saw this sign and had to take a picture. Cilicia and Santi couldn't eat all morning, so we didn't eat either. =)Even eating peanuts beside them made you feel horrible. Actually, we teased Cilicia that she was eating lunch before us as she was hooked up to an IV in pre-op. Anyway, Animal crackers couldn't have tasted better to Santi after surgery!



It was great seeing Santi have an appetite last night just after surgery. I don't think I mentioned that Santi also had a G-tube placed for feedings. The little button looks like the closure of a beach ball. Since he will be in intense traction, the Dr. thought it best to have extra calories going in his body and help in putting more weight before the next surgery as he may not have such a great appetite.