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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

6 comments:

  1. Love these amazing milestones! As a big sister myself I love to see the way Isla interacts so naturally with Oakes. Still waiting for that at home play date I dreamed about!

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  2. Such a great update. Love all of it. The big steps for Oakes, swing Isla play with him, and your love and support for the other families.

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  3. Such a wonderful update on sweet MO. Maddi is in our prayers as well.

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  4. Amazing wonderful fantastic news! All the kids in the hospital are in our prayers!

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  5. Way to go Oaksie! I can't wait to hear about you "stepping" it all the way out of there!

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  6. Amazing, brilliant news. Overwhelmed with joy at the great steps Oakes is taking and love love LOVE the pics of him and Isla together!! Peace and love to your beautiful family. Thinking of you always
    Kim

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