Gramma's Apple Orchard

Charlie and Scarlet in Grandma Daisy's apple orchard doing a little raking and a lot of exploring.
Scarlet loved walking through the trees. It was a perfect day for it too, slightly windy and cool.
She is such a happy girl, the absolute light of our lives.

Scarlet found all kinds of interesting things on the ground. We're working very hard at teaching her not to put things in her mouth. It's funny, for a girl who struggles with actual eating, she likes to put strange things in her mouth!

A few forgotten Pictures...

This picture was taken at our last trip to Seattle at my parent's home. Scarlet was having some fun playing peekaboo in the kitchen island cabinet thing.
The behind shot... :)
I couldn't find this picture when I posted about our Mariner's game. This is Charlie and his dad right before the game started...that's why they are still smiling. :)

Random Pics of Scarlet

I put Scarlet in her monkey costume again...I do that to kind of gage her growth and she has grown a little bit more since the last time I put her in it. I'm glad I caught this on camera, this is Scarlet kissing her blankie bear. She kisses all of her stuffed animals. She puts their faces in her mouth and starts humming. It's so funny!
Scarlet is really good at sniffing and making monkey faces and they happen to be the same face. Here she is making a monkey face. Whenever we used to ask her to make a monkey face she would do that with her face. Now she just kind of looks at us whenever we ask her to. But, whenever she sees flowers she sniffs and if we even mention smelling something she sniffs and tries to smell whatever it is we're smelling.
Scarlet and I were sitting in the window seat in our bedroom watching Charlie in the yard and the sunset was gleaming light onto Scarlet in such a way I thought it was worth trying to capture the shadow on camera. By the time I thought of it though the light had changed and it wasn't as good as at first. You can still tell it's her though.

Mariner's Game

Last year Charlie and I decided to take our Dad's to the Mariner's game for Father's Day presents. We had really great seats last year, pretty close to third base and like 3 rows up. A ball was actually hit right to us and Len had his hand on it but the kid behind us grabbed onto it and wouldn't let go. Finally, Len gave in and let him have it.
This year our seat were one section over and 27 rows up. I was kinda bummed because compared to last year, those seats weren't nearly as good. I was wrong, I'm wrong a lot, they were great seats. We were able to see the game just fine and we were in a hot spot. Several balls came flying in our direction. My brother, Davi, here in the picture with me, really wanted one of those balls. It was pretty cute. He was like a little kid at a baseball game, he was so sad at the end of the game because he didn't get one.
Some guys in front of us took this group shot of us. It was pretty close to the end of the game and the Mariner's were losing. That's why most of the seats are empty. Oh yeah, Davi took my dad's ticket because my Dad had to fly to S.C. to be with my grandpa before he died.

In the Backyard

Here is Scarlet in her sandbox we got her for her birthday. She had so much fun with all the toys and playing in the sand. I love this outfit she is wearing. It's from Janelle's mother-in-law, Dawn. She got it for her as a baby shower gift and she is just now getting to wear it.
It's actually a 6-9 month outfit. That can probably give you an idea of how little Scarlet is. She is such a spunky kid, lots of personality.

Here's an updated shot of our SFGarden. Whenever I start something new, I get really excited about it and kinda skip some "minor" details. Like, I didn't mark what is growing where, so with the exception of a few obvious plants, I really couldn't tell you what's what of some of the squares. Note to self: mark your squares!
Scarlet started eating the sand so I put her in her exersaucer. That keeps her entertained long enough for me to water the plants which is all I'm asking for. I think I'm going to need to move the garden though. We have a maple tree that is completely shading the area most of the day. I like it because it allows Scarlet to be outside more because she can stay in the shaded area but my poor garden needs some sun. I'm thinking I'll have it moved over in the back by the fence here shortly. Oh yeah! We tasted our first raspberries of the season. Very tasty! Scarlet didn't like them though, not surprising. All she likes are cheesy puffs and noodles. : ) At her last Dr. appt. they recommended that we take her to a feeding specialist in Kent. I'll let you know more about that as it comes.

27th Birthday Extravaganza!

Debbie bought me this necklace in the picture along with a matching bracelet. Monique, the one who makes and sells the jewelry threw in the earrings as her present to me. You can't really see it in the picture but there is a starfish in the center and the opaque yellow stones are pineapple quartz, to remind me of Hawaii. I love it.


Can you believe we are really that old???? I was pretty upset about it the week before our birthdays because I feel like we are inches from turning thirty and when you are 30, you are old!
(no offense to anyone 30 or over out there.)I was also under the impression that when you get older your presents get smaller and, let's face it a little lamer each year. I decided on my birthday to have a change of heart and embrace aging with gladness. I have a new dedication to putting on moisturizer everyday, keeping the sunscreen on, and no more picking at my face starting today! :)
We actually had the most fun on this birthday than we ever have, probably.
My birthday is on the 10th and Charlie's is the 12th so we celebrated on the 10th, 11th, and 12th making it a birthday extravaganza!
Charlie's family came over on the 11th and I made Wienerschnitzel mit Zitronen, Kartoffeln und Gemuese. Then we opened presents and we had a fun surprise. Len, Charlie's dad, had set up a treasure hunt for us to find our present. There were clues left all around the house. We went upstairs and then downstairs and outside. It was so much fun! Finally, the last clue led us outside to Len's truck where inside was a huge new barbecue! Everyone went in on it and it's actually for our anniversary as well. It was so nice of them to get that for us.
So, I was wrong. Just because you get older your presents don't always get smaller and lamer.
It was the best birthday in a long time. And honestly, I needed that.

P.S. The last picture is a little fuzzy because it's really a video.

CMV and Kidneys

Here is Scarlet on Daddy's shoulders waiting for what seemed an eternity for the Nephrologist on Monday.

I didn't mention a lot about the medicine that was affecting her kidneys in the last blog so I'll include it in here.
As most of you know, Scarlet is still fighting a potentially deadly virus, CMV.

It is speculated that the medicine to fight the CMVirus is what caused her to have kidney damage because it is a known nephrotoxic drug, but there is a chance that it could be secondary to her bone marrow transplant. Perhaps another form of Graft vs. Host disease, which she still is fighting in her liver.


So they have taken her off the foscarnet drug affecting her kidneys and now she needs to fight the virus on her own. Which would be ok a year post transplant but she is still on a lot of immunesuppressant drugs that she needs to protect her graft which prevents her from fighting illness on her own.

The transplant doctors never told me that it is difficult to test a baby's kidney function based on creatinine levels. The nephrologist at Children's was the one who told me that the blood levels they take in children are deceiving because of muscle mass, etc. She told me that in children the creatinine levels aren't affected until a 60% kidney loss. I was a little upset with the transplant team because, somebody should have told me this. Someone should have told me that there is a 25% chance of kidney disease in transplant patients. All I've ever been told in the past was that foscarnet may affect her kidneys, and the way they said it was that it was unlikely. They tell me that CMV is a greater danger to her than kidney failure, that it is better to sacrifice one part of the body to save the rest. Who can argue that? But I really don't want her to have to go through a kidney transplant in addition to everything else she's already gone through.

I don't want anyone to think that I think badly of the transplant team. They are amazing and what they do is amazing. They do their best to save lives and they really care about each patient. I can still walk into Children's hospital where Scarlet was for 6 months and the doctors there will know about her. Without them Scarlet may not be here. We owe everything to them and God for keeping our baby here with us.

Sorry, this was a big chunk to leave out of the other blog but I had Scarlet in the office with me and didn't have a lot of time. She is becoming so much fun, she loves to laugh and giggle, play peekaboo and is learning all the time. I can't express to you the joy she is to our lives.

Please keep praying for Scarlet.

Iothalamate Test & Results

Here is Scarlet undergoing her Iothalamate test in May. Poor thing could only eat jello and drink clear fluids during the whole 8 hour test. This is her IV stand that we had to push around everywhere. It was so nice having help.

Scarlet has learned to blow kisses and this is what it looks like. :)
We got the results of the test back 2 weeks ago Thursday. It was a phone call from the PA at the Seattle Cancer Care Alliance (SCCA) which is never good. If it's a routine call it's usually from a nurse. The PA began telling me the results of the test showed that Scarlet was in stage 3 chronic kidney disease.
Wow! I didn't see that coming.
My heart stopped and the tears came streaming in as I tried to listen to what she was saying. I didn't know anything about kidneys so I didn't understand everything she was telling me.
Scarlet's GFR rate showed was 58, this number was fit to an adult scale and normal is anywhere between 90 and 120ml. Scarlet's creatinine levels have always come back good so there was no reason to question her kidneys.
I was watching a show on autism on the PBS station last month and it started talking about medicines affecting development, etc. It got me to thinking about Scarlet and the drugs shes on and how they may be affecting her. I brought it up to the Drs in Seattle at the next visit and asked them if the medicine she is on is damaging her liver, kidneys or brain. The transplant Dr said she would order a special kidney test because it was a simple enough way to see how her kidneys were doing. I thought at the time that maybe I was being pushy or paranoid. But now, I feel like it was inspiration from Heavenly Father. This isn't the first time I feel that He has had a direct hand in her care. I can't even express the gratitude and love I have for our Heavenly Father. I owe everything to Him. I felt so hopeless when I first heard the news, like I was going to really lose my baby this time. I'm so glad that Charles was there when they called, he is such a comfort to me. Scarlet and I have since had a blessing and I feel like the Lord is lifting us up and helping me to feel comfort in knowing that she will be ok. We saw the nephrologist at Children's yesterday and they confirmed what the test said, I was waiting to know more before we told a lot of people, they also did an ultrasound of her kidneys and saw that they were abnormally small and there was some dilation indicating damage. They also saw that she had some bladder reflux but that could have been just because she had a full bladde at the time the ultrasound was taken. So, that is the new news right now. We'll know more next week at her SCCA clinic visit.
I no longer feel hopeless, at this point I feel more like here comes the storm now brace and push through.
I'm going to ask you all to please remember Scarlet in your prayers and fasts when you do. She is headed for a long road to getting better.

Hickman Line

I decided to post a blog showing Scarlet's hickman line again. I change her dressings once a week or more depending whether or not she pulls at the dressing. I've posted about this before but in case you've forgotten, it is a catheter that is inserted into her vein in her neck extending to her heart, it exits just beside her nipple to prevent infection . There are a couple stitches externally but there is, I forget the name for it, something just on the inside where it exits that was put in place to keep it from coming out easily.
Here is the finished product after the cleaning. Michael was taking pictures so that's probably why she isn't screaming. She was more interested in watching him.

The circle around the site is called a biopatch. It is infused with antibiotics to keep the site clean.
Scarlet is getting a daily IV infusion of magnesium to keep her levels up. She is still on Prograf (tacrolimus) that causes her to be deficient. We've just gotten some bad news so we don't know how long she will have the hickman line now. We thought it would be out in September, but now it looks like she will still be needing it longer.

Happy Graduation!

We were able to get together with all the "Feigal" family (Charlie's Mom's family) for Michael and Matt's high school graduation family party at Confluence park on Saturday, June 7th.
I had bought Scarlet this fun dress for the 4th of July, but Charlie found it and dressed her in it for the family party. Oh well, you'll see her in it again for the 4th. :)
It was so windy there at the park, all the food was flying away. It was hard to keep everything from blowing with the wind. We managed to still have fun though. Debbie brought out the tug-o-war rope and we had fun with that. Scarlet loved seeing her cousins and Shadow, the dog. Whenever she sees an animal she screams with excitement. I did let her pet the dog though, probably shouldn't have, but it was hard to resist. She wanted to pet Shadow so badly. We had a great day!

Out in the Garden

Charlie and I have been wanting to do a Square foot garden ever since taking the class offered at BYU-H by Mel Bartholomew himself. I love seeing plants grow. Scarlet and I water the plants everday together. So far we have raspberries, rhubarb, blueberries, Grapes (from our neighbors), herbs, flowers, tomatoes, squash and zucchini, beans, peas, lettuce, peppers, carrots, onions, and spinach! We walked out to the SFG today and saw lots of little plants coming up. Pretty exciting! The pictures are of Scarlet sitting in her excersaucer thing and watching me put in the dirt for the garden. That's her with Grandpa Len. She loves being outside.