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Monday, February 27, 2012

Mighty news from our Mighty Oakes and more...


Here is what we've got:

First, we have had some pretty nice, quiet snugly days lately. Oakes is pretty comfy in his helmet and always loves with Isla is around. (His helmet has been resized three times already, proof that it is working, although Greg and myself and lots of his nurses can visually see the difference that the helmet has already made!)


Isla serving tea to Oakes and some of her stuffed animals.

I caught her tickling his knee, trying to ever so sweetly wake him up.


After the tea party, Greg showed up and got Isla laughing, they put on quite a show for Oakes.


He didn't take his eyes off of them!

And then Isla started giving him kisses....






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A few days later, at home, Isla wanted a turn with the camera. More of her pics...




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One of the best days ever. Isla was sitting in Oakes' crib and she wanted to color. She asked Oakes, "what color do you want?"


Then she planted her cup of markers in front of him. A minute later our amazing nurse Andy had tied a marker into Oakes right hand and our first little art session had begun! Oakes excitedly moved his arm all over the page.


...and Andy snapped two pictures of the event. Thank you, Andy!

The finished masterpiece! Oakes' markings are in blue, Isla added the purple and red.

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In the last post I shared pictures of Oakes' healing belly, and here is the latest. He is looking great!
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Isla giving Oakes a little push!

Another picture taken by Isla.

Playing on the floor mat again.

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Isla's french braid. She looks so big in these photos.


Her standard reaction to me requesting that she smile. Little ham.
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Valentines from his cousins taped to the inside of his crib!
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Our little piglet! Oakes has made lots of progress eating. Two weeks ago we conducted a tiny little swallow study. We added blue dye to his food, then suctioned his trach. If we saw anything blue come up after we suctioned him we would have known for sure he was having issues swallowing and we could have concluded that he was aspirating, but that was not the case. We have continued these little studies and no blue secretions, so very soon we will offer Oakes formula and see how that goes!
Blue bananas.

This was right after the bananas, I couldn't get his cleaned up fast enough, bananas were everywhere, his hair, his ears, all over his leads and blankets....but boy, way he happy afterwards!






I should mention that while we were doing this feeding, Renee, one of the Residents casually stuck her head in the room and said, "Oh, you guys, we have dropped Oakes' isolation, you can take all of your gear off" and as she quietly walked away, myself, and the three other therapists that were in the room erupted in cheers. No more masks, gowns or gloves! Oakes has been looking at my face for some time, and Isla's and Greg's, but the CICU staff could not have gotten away with that. So for the first time since transplant 7 months ago, Oakes is seeing the faces of the amazing people that have been caring for him. He has been so very stimulated - he sees noses, and mouths, smiles, expressions.....it is a whole new world for Oakesie.

And the good news does not end there. That same day I was told that Oakes might move to the Annex. The CICU has been busting at the seams for some time and to accommodate the CICU has taken over 2 7West rooms which they call the Annex. Same CICU staff, just 40 feet closer to 7West. SO, once isolation was gone, Oakes dropped to the bottom of the list of critically ill kids on the floor. AMAZING, right? I was told it would take several days to get him down there, that there was no rush, but he moved the next day! It took 5 nurses an hour to pack up his stuff and remove all of the artwork and photos from the walls in his room, but they did a great job and I caught them right before the walked Oakes down the hall. It was emotional for a minute. For a minute I was sad to say goodbye to Rm 9, but boy was I THRILLED to walk with him down to his new room. I have been praying for that walk for months and months and finally it has happened.

Oakes coming down the hall to his new room!

His new room is tiny, and we have a room mate, but truely, downsizing has been great!

I couldn't make this up or stage this if I tried. Here is Oakes being wheeled into his new room. There were a half a dozen proud and excited nurses fussing over him as we walked down the hall and one of them said something like, "Oakes what do you think of your new room?" and he just stuck his little thumb up in the air!

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And then later that day we had more blue bananas, it was a good day!



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So, Oakes has been in the Annex for about 10 days. He is off of all of his drips except for one of them which we are weaning (Versed was turned off last Monday, and Dilaudid is what we are weaning). That will take at least 3 more weeks. When he moved in I asked Dr. Gazit how long he thought we would be there and he said a month at least. He said they were concerned that Oakes would start showing signs of withdrawal. He also commented that the next big hurdle would be to not have to adjust Oakes' diuretics for at least a week. This definitely seemed like a huge hurdle, because this has NEVER happened before. He has always needs adjustments to his diuretics. It has been a constant balancing act and his team has just treated him day by day. Since this conversation, Oakes has not had signs of withdrawal, we continue to wean his meds, he has not had a fever which was an issue for so long (just these mind grade fevers) and unbelievably, Oakes' diuretics have not been touched in a week. So the big news is that Oakes is going to 7West on Tuesday!! OAKES IS STEPPING DOWN. And after a stay in 7West he will come HOME!!! I can hardly believe we are here. Dr. Gazit shared this exciting news with Greg and I today while we were there with Isla visiting. He was so happy, so full of hope, and I could tell he felt proud to tell us about 7West. After he walked away I leaned against one of the walls in Oakes' little room and just had a good cry. I am so grateful, so overwhelmingly excited and I just feel like we are so lucky, so blessed to keep getting good news.

Thank you all for your continued prayers and love. Oakes will be 1 year old this Saturday, March 10th. What our little birthday boy has been through in one year, what he has overcome, and endured is just completely overwhelming. Greg and I, Isla and our families have seen him day by day, we have lived it hour by hour, and minute by minute at times, and looking back I have no idea how we have done this, much less, I have no idea how he has powered through. What I know is that we have been supported by amazing family and friends, and we have had prayers, love and healing energy coming to us from all corners of the globe. Thank you friends, we sure do love you!
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An update on Easton: Easton, our strong little buddy has been sent back to Kansas City. Easton was on a plane flying home while Oakes was walking down to the Annex. One week his family got devastating news that he needed a new heart but wouldn't qualify for it, and would likely not survive, then about three weeks later he was stable enough and healthy enough to head towards home. An amazing turn of events for our friend. I hope the next time I see Easton or his parents it will be for a play date and not in a hospital!
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We fall in love with our kids, that is what parents do. Not sure when it happens, conception, the first movemnt they make in utero, when we see them for the first time, maybe for some of us it is months later, I don't know. For myself that love runs deep. It is in my being, it's a love that I think has always been there just waiting for my kids to arrive. This love is all consuming, I have and will give up everything for my kids. I will push and advocate for them, I will fight and demand for them. I will quietly hold them, rock them, listen to them....I will do everything I can for them.

In this past year or more I have desperately pleaded with God for miracles. I have begged for stability, for days of boredom for Oakes. I have channeled deep breaths and wrapped Oakes in my invisible heartstrings and healing light. I have prayed for strength for Oakes, for myself, for Greg and for Isla. I have called on God, Mary, the angles and saints, the universe, I have appealed to the heavens with an array of requests. Don't you remember me asking that you pray for pee? My prayers are on average, intense, specific, medical and lengthy.

There is a family on the floor that I absolutely love, and I am asking that you pray for them, specifically for their daughter Madilynn. I know that these parents love their children in the deep and consuming way that I love my children. When it comes to Madilynn, they will do anything, and as I have gotten to know this family it has been moving to hear what they have already done for her. Madilynn is 3 years old and has been in and out of hospitals all of her life. Last week they got heartbreaking news about Madilynn's health. It seems they are running out of options as to how to treat her, and I believe that they are saying some of the same desperate prayers that we have said for Oakes. Please pray for amazing healing in Maddi's heart and lungs, as well as her kidneys. Please pray for her parents that are divided between the hospital and home as they raise other children, for her strong, brave and dedicated big brother, and for her Grandmother who is never far away.

Madilynn is never alone, there is always a family member sitting at her side around the clock, every single day and they have been at SLCH since July. I hope that Madilynn and her family feel the effects of the prayers and healing that comes from this mighty group of people.

Mighty love to all of you! XO
Becky

Wednesday, February 15, 2012

The last few months.

I have been uploading pictures for weeks, and here they all are, but first.....

We have had an absolutely amazing week. I have to back up a bit, last Thursday Oakes went to the OR with Dr. E for a dilation of his airways. While they were there, Dr. E was going to take measurements of his airways so that Oakes' stents could finally be ordered. He went down at about 6:15pm. Greg was out of town and I had Isla with me at the hospital. I had no doubt that the trip would be uneventful, my main goal was to keep Isla under control while we waited for Oakes to return to his room since we were going to be up much later than her usual bedtime. At about 8, Dr E came up to the room with a big smile and shared that the trip went "too well." He explained that Oakes' airways looked great, and weren't nearly as narrowed as he had expected. The two other important pieces of info that I left with were that 1) Oakes did not require nearly as much ventilator support as he has in the past. In fact there were moments where he was getting NO support and he was just fine. Dr. E asked Dr. Oren who was the attending, "Have we been challenging Oakes with the vent?" We hadn't recently because we have been focusing on other issues, but Dr. Oren and I both heard the message. Oakes is stronger than we were giving him credit for. And 2) because he looked so good, we may not need the stents! (my head is spinning and there are lightning bolts coming out of my ears!)

So weaning the vent happened over the weekend, and Oakes has been on a HOME VENT since Wednesday! On Thursday, Isla and I met up with Oakes and Rebecca, his amazing Physical Therapist in the morning for a little play date. We sat on the floor and just played. This was a first. It was about twenty minutes of heaven. For all of us.

During our play time Oakes was alert, calm, happy, interested and he participated appropriately in everything we did. Isla was SO excited. She squealed "Oatsies" and "Bubby" the entire time. She wanted to show him every inch of every toy that we had on the mat. She proved herself to be a patient, compassionate, loving & an excited big sis! I think she could just feel how normal of an activity this was. I told her about our play date the night before and asked her what she wanted to do with Oakes. She first told me that she wanted to teach him to jump, then later came back and told be, "Oakes wants to dance, Momma!" so I assured her we would teach him both of those things.


Here we are.

I seriously explained the word "permagrin" to Isla later in the day. I was a happy Momma.








Isla was kicking her feet, so Oakes did too!

Isla was right in front of us just jumping like crazy, smiling and saying, "Jump, Oatsie, jump!"

With the help of Rebecca, Oakes' feet were on the ground and he felt a little of his own weight.

There is Isla jumping!

The post play date update gets even better. In about a week and a half Oakes will be off of one of his sedation meds, Versed. A big med that he has been on since transplant, and one that we could not leave the floor on. So now, there is talk about heading to 7West. We likely won't go in a week and a half right after it is turned off, but we are headed in that direction sooner than later. AMAZING. We will not have Oakes home for his Birthday on March 10th, but today I heard maybe in the month of March. I will take it! (now there are big red heart bubbles floating out of my head - permagrin in place!)

Just so you know. The stents are still being ordered if they haven't officially been ordered yet. Our insurance agreed to pay for them so that hurdle is behind us. They will be a back up plan, a "just in case" but we are all hoping that we won't need them. I hope those beautiful, amazing, miraculous stents come nowhere near Oakes. Dr. E explained that Oakes has likely outgrown the need for the stents. His airways are stronger, they have grown. He just needed time. He needed to go at his own pace. I agree. He has always told us about the pace he wanted to go in. We are just so thankful that he was strong enough to be able to handle his pace, strong enough to just coast through and not have any kind of emergency along the way. So, yes, I believe Dr E is correct - time. But, I also know in all of this time, there have been so many prayers, so much love, so much healing energy directed at Oakes - of course he has been healing!

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SO, flashing back to mid December an on. Some pictures, old news, but all worth sharing....

Isla before her school Christmas program (holding a button).

Processing down the aisle at church ringing a bell with all of the other kids. Bell in one hand, security blanket button in the other, smile on her face....

Mid row in the front, bell there, button there, smile gone. She stood there frozen, just crying.

When I met up with her in the classroom about forty five minutes later, she was still holding that button!

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Shortly after, Oakes' dialysis started. He received paritoneal dialysis. They thought it would last for weeks, but after one week is was discontinued. It was helpful, but his team thought the medications that he was on previous to dialysis were just as effective with fewer risks. Greg and I were not sad to see this go.

This was part of the dialysis set up. This basically warmed the fluid.

The fluid was measure and held to gravity to fill Oakes' belly. Emily, our Pheresis nurse returned to do dialysis. Great to see her, but not her gear!

This bag is where the fluid would drain into and be measured.

Oakes sleeping, and Emily filling.

The lines would be opened or closed according to what was happening.

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Ena and Grandpa visited. Isla squeezed into Oakes' Santa shirt to entertain all of us.

Christmas cookies and sitting with Grandpa, a great combo.



A great pair, Ena and Oakes!



Oakes' doors, decked out for the holidays. We even made a fireplace so Santa could get into the CICU.

This is Oakes door as we came to visit on Christmas morning. I had left a few small gifts for the nurses to put out that morning before we got there, but there were many more gifts that I was not expecting. I know some were from Santa, but our incrediable nurses added gifts too. Gifts for Greg and I from Oakes, and gifts from Oakes to Isla. The gifts from Oakes were amazing, little priceless handmade treasures. We were so spoiled and so loved by our CICU family!


Isla with her Ortyl cousins! Serious girls fun was had!

Do you remember Nel? Our therapy dog freind? This was Nel's last visit to the floor. Sadly, Nel has cancer and has retired. We miss her very much!

And here is Oakes on New Year's Eve

All smiles, decked out in his Dr. Michealson bow tie, ready for 2012!



I left a New Year's Eve party in time to be with Oakes at midnight. I had to be the first one to smooch him because I knew the night nurses were going to line up to smooch him....

....and I was right!

Plus, I had a great view of the fireworks going off over the Arch.

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Every Sunday in January, the penguins at the St. Louis zoo would march outside of their exhibit. The would march out of one door, parade in front of thebears and go back into the penuin house and we were loyally there to see our smelly little friends waddle on by. Not sure who enjoyed this more, Isla or myself?

Waiting.

This little guy is named Trouble.


Kissing.


So much fun!

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And then we would shuffle inside for a treat.

Yum.
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Our Might Oakes Heart Foundation TShirts.

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Next in the line up: Oakes abdominal surgery. Oakes had a few adjustments made to his stomach, most significant was a line placed for feeding called a G button. This was a major surgery and was a bit of a set back for Oakes. His kidneys struggled afterwards and he just wasn't himself for almost two weeks, but he is healed nicely, and 6 weeks later (that was this week) the protective red "nipple" on his G Button just got removed and the "button" has been placed (which is typical for this procedure).

Post Op.
Oakes needed blood after surgery because his PB was low, and the easiest place to put a line in is his head.
We love blood donors! Thank you! XO

The incision from this surgery is much bigger than his open heart surgery. He now has one long scar line from his collar bone to several inches below his belly button, which ends in his diaper now.
Sweet Bubby!

Sleeping with his new bib from Grandma!

Trach care with Yvonne.

Staples, and a red "nipple" over the G tube to protect it and allow it to heal. (The line for dialysis was removed during this trip, it is the little scab to the left)



Healing. His belly button is in there somewhere!

Staples out, steri-strips on.

Steri strips off, still healing.
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We mentioned a SLU Basketball game that was honoring the MOHF a several other chairities in January. The game was too much fun! We got to hang out with old friends, and new friends alike.

Greg with nurse Daniel

Seconf level, to the right of the Best Buy sign, smiling and gorgous, nurse Ali and hubby!

Katie Smith and daughter Ellie. Both huge Oakes fans. Katie is the inspiring team captain for our American Lung Associations, Climb for Air 2012 team, that will be climbing 40 flights of stairs in Oakes' name. The event happens on Oakes' 1st birthday....more details to come!

Nurse Elaine & boyfriend John.

Nurse Yvonne and hubby Joe.

Brian and Tricia Rose with Amy Rush.

A small group of freinds after the game.

Julie Valerius, Nicole Wechkerlin, and myself. THANK YOU Nicole for organizing the entire night! XO

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Mid-January, we got about 3 inches of snow that just shut the city down. When I woke up reports were saying if it wasn't an emergency, stay home! So Isla and I did just that. We called and checked on Oakes often, but we staying in our jammies and just hung out all day. It was great!


We put whipped cream on everything we ate that day...


We talked about the snow non-stop, but we didn't step foot in it.

Marker on the finger looked like a boo boo, so we needed a band-aid.

Isla took a turn with my camera. She captured her best girl, Ashby...

....her little cupcakes....

....and edamamme, part of the all day graze-fest.

There was lots of time spent on the couch rolling around with Ashby.



Genuine happiness, a lillipop.


Our backyard.

Playing in a box kept Isla busy for a few hours.

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Meanwhile, our best gift ever was doing just fine.



Any old finger will do really!

He is getting SO big.

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Working on Valentine's decorations



And later, painting a car at the hospital's playroom


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January 22, we celebrated 6 months with new lungs! A milestone that we are thrilled to have met. It was a pretty quiet celebration that only got better when cupcakes were delivered to Oakes room from Chris Suchomski and family. Thank you, Chris, XO!



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A great visit from Grandma Jane and Grandpa Greg.





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Greg and Isla getting ready to go on a date.


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Smiling in his sleep!






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Our dear friends Matt & Cindy Fitzgerald came to visit. Later that day Oakes had a consult with Plastics to get a helmet. Since most of his life has been spent laying down his head is not symetrical. Not even a little symetrical. I was bummed out for about a minute, thinking my poor baby would need to wear a silly helmet, but I quickly got over that. What's one more accessory? And now, I LOVE the helmet.

A mold was made of Oakes head, just like an old school cast would have been made. As you can see, Oakes slept through the entire thing.

Nurse Daniel was with us to help. (Daniel will always hold a special place in my heart. He took care of Oakes the night that Oakes was born. At the time he was a NICU nurse, but recently Daniel transfered to the CICU. Leaving Oakes in the NICU was so hard that first night, I was up at the crack of dawn to get back and see Oakes and when I got there, Daniel had spiked all of Oakes hair, which made me smile. Since his move to the CICU Daniel and Oakes have spent a lot of time together, and as far as I am concerned they will always be boys!)



And here is the mold coming off!
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Dew More Fundraiser at Dewey's Pizza.

We had an unbelievable night at Deweys with amazing freinds, delicious food and fantastic wine.

The night went off without a hitch, which is a credit to the Dewey's staff who all volenteered their time to come an serve us, bake for us, and clean up after us....Thank you Dewey's for Dewing More!

Everyone was captivated as Adam Lee, from Novy family wines spoke. Adam came in from California just for the event. As did a team from Dewey's headquarters in Cincinnati.

The guest chefs for the night having fun in the kitchen.

Two fabulous servers getting to taste the yummy pizza in the kitchen!

Cary McDowell getting ready to help serve up dessert!

The Celebrity lineup for the evening: Cary McDowell of Winslow's Home, Dave Justice GM of Deweys in the back, Kevin Nashan of Sidney Street Café, Gerard Craft of Niche, Mike Emerson or Pappy's Smokehouse, Adam Lee of Novy Family Wines, Andrew Dewitt Owner of Deweys in the back and Tim Brennan of Cravings. We really could not have been more spoiled. These are some of THE best chefs in town, and although they are all freinds they have never come together for an event like this!

We even made it on a local morning TV show and an article was written about the event as well.

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While Oakes can only dream about Deweys pizza now, he did get carrots the next day!


And here he is all cleaned up.

And here is Isla in the corner of the room swinging while all eyes were on Oakes

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After Pajama Day at school, Cate and Isla and I went for lunch then had a playdate.


Cookies!

Busy little girls.

We sure do love our friend Cate! XO

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Decorating the fireplace with little Valentine critters.


Notice the Valentine butterfly made it to the door, as well as the cutest pengine footprints ever!

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Playdate at the Zoo. Here is Isla and I on the train, choo-choo!



From the zoo we went to the hospital to check on Oakes. Isla wanted a snack and a movie....

....and she fell fast asleep. I didn't think about it until then, but that was a first - Isla and Oakes asleep in the same room. Loved it!

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Just one of the ways I keep Isla entertained at the hospital.

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Time with the Fox girls.

A moment with Ena. Looks like she is giving him a good talking to, but knowing her its a pep talk and sweet nothings!


The helmet is on!

Aunt T Frannie finally got to see him awake, and hold him!


Girlfriend/Nurse Jen loving on Oakes.

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This was last week, a family visit with Oakesie.



You were expecting this picture, right?

Isla with the camera again.

She's got a great eye!

Pappa reading books.

Everyone was listening.

February 10th....11 months old!




Such a big boy, sitting up and playing!

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Last weekend we were all visiting and Isla disappeared for a bit. This happens often. A nurse will grab her attention and keep her occupied for a bit. Here she is sitting at the desk where all of the staff works, eating Fruit Loops while reading the latest order that were on the computer screen. That is Dr. Doctor behind her on the phone.


One of our floor mates had a birthday last weekend and the family brought in cupcakes for everyone. Isla was happy to sit with Tammy and Elaine and hang out while snacking on the top half of a cupcake. A minute after this was taken the Fellow sitting behind the girls asked Isla what kind of medicine she thought Oakes needed and on cue, she said, "we need to tickle him!" so the Fellow, entered that into his chart as an order given by Nurse Isla.

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Just this past Monday morning Oakes and some of his girlfriends took a trip over to the CAM building for a PET scan. My pictures don't show this very well, but on the way there Oakes was alert and awake. He was propped up on his Boppy, and was waving his right hand in the air the entre way there. It was like our own little Mardi Gras parade.

(For the last few months Oakes has had these unexplainable fevers. They are random, sometimes mild, but sometimes they shoot up and he needs cooling blankets or an ice bath to regulate his body tempature. Each time this happens they culture his lines, his trach and nose, and nothing ever grows. Fever could be a sign of rejection, so the PET scan would show where the infection was if in fact that was the case. Results came back later that day, they were completely normal.)

Walking down the hall

Waving to everyone we passed.

Nurse Maddison was with us and took great care of Oakes.

Oakes getting his scan.


He looks perfect to me!

Sleeping peacefully during his scan.

This is short and a little hard to see, but this is the 3D model of Oakes created during the scan.

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A sign I made hanging that has been hanging on Oakes door for about a month. Our entire team is made of people that believe in the impossible. You just have to if you work in the CICU! We LOVE everyone that has been taking such great care of Oakes and our entire family!

Happy Valentine's from the Ortyls, especially our little LOVE MACHINE!

Greg took this on the 15th. Oakes was all smiles and laughs before the camera phone came out and then Oakes was a little distracted - this is still a good look at our handsome and happy guy!

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Mmmmuwha!
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An update on Easton: Easton is doing well. He is actually doing really well. Several weeks ago, his parents were reparing for the worst, and now they are talking to their Docotors about being transfered back to Witchita as Easton has turned a corner and will not need the St. Louis Children's team very soon! AMAZING!

Several of the nurses have commented to Easton's mom Brittney and I about how similar the two boys are. Beside both being Truncus babies, and having simila scars, tubes and meds, they are both sweet, strong, pull through the tough times, they both have little tempers, and they are stealing the hearts of their nurses becuase they are so cute. Brittney and I agree that they are besties, and they are a great influence on each other.

Please keep the prayers coming and if you want to follow Easton's story, check out his blog: http://www.caringbridge.org/visit/eastonrush

Easton with his Mom on Valentine's Day!