IGG infusion

Here is Scarlet a week or so ago. We are at clinic getting her IGG infusion. It takes about 4 hours to infuse but we are there much longer than that every Friday. Some additional news is that they do want to start her on Prednisone for what they expect to be GVHD of the liver. It is a 6 month+ therapy. I actually talked to the transplant dr and she said that we should be able to go home on time still given Scarlets primary care dr is comfortable with taking over her care. Anyway, Scarlet loves reading her books! So stinkin cute!

Same M&M...

I should have posted this picture of Scarlet along with the others. It's way too cute not to share!

M&M's

I was eating M&M's while holding Scarlet and she kept watching me intently. So, I let her taste one. They were the bigger kind and easy for me to hold onto, in case some of you were worried about her choking or something. She liked licking it and made a green mess on her face. Pretty cute.

And now for my final trick!

There is a mirror in the direction that Scarlet is looking. She's finally discovered the baby in the mirror and when I go to wipe her up she does this acrobatic twist to look in the mirror. So funny! Not so funny when it's a poopy diaper though!

I haven't figured out how to rotate the pictures yet...sorry!

Daddy time

This is just a really cute picture of Scarlet and Charlie. It's been awhile since they've seen each other. We'll be home soon though!

Bathtime!

I found this duckie bathtub a little while ago and Scarlet just loves it. It was a little awkward at first but she is really comfortable in it now. Bath time is a lot easier now and a lot more fun!

Tagged again!

Four or more places I have lived~
Germany
Maryland
Hawaii
Washington
Four or more places I have been on vacation~
Maui
Italy
Austria
Switzerland
Four or more jobs I have had~
GNC
Lifeguard
Water Aerobics Instructor
Substitute Teacher (Yeah!!)
Four or more foods I like~ (more like types of food)
Indian
Thai
Mexican
Homemade stuff
Four or more hobbies~

Wow...I don't have a lot of hobbies!

Four or more things people probably don't know about me~
I'm incredibly cheap. I can't stand paying too much for anything. I get a certain amount of money reimbursed from our insurance while staying in Seattle and I still can't pay full price when I go to the grocery store.
I get super motion sick. Charlie and I did a shark adventure tour in Hawaii and I couldn't even pull myself away from the edge of the boat I was throwing up so much. I had to watch the sharks swim from the side of the deck where I lost all of my breakfast and some of my dinner from the night before! I threw up over thirty times!! Not exaggerating. It was still cool to see the sharks, but I have never been so sick in my entire life.
I don't like going anywhere alone. I have a small aversion to it for some reason. I'm not agoraphobic or anything, just prefer to have company. Especially at night or going on a jog where I can't have my cell phone. I've watched way too many CSIs ' to go out at night alone.
I love sports but I'm not especially great at any of them. Which is kind of embarrassing considering my degree is exercise and sport science. But I do love sports of all kinds.
Four things I would do If I were a billionaire~
Buy me and everyone of my family members a dream home. Build a couple homes in Europe too.
Fund research for cancer and rare diseases.
Open a shelter for homeless where they could go to build skills and develop an education.
Start some kind of organization for foster kids. I don't really know what, but I just think there are a lot of kids who need a good home and there aren't a lot of good homes anymore.

Scarlet Update

I'm a little behind in blogging. Sorry about that. Things have been going well so far outside the hospital. It's been so much fun staying at the Ronald McDonald house. We had Grandma Debbie come and stay for a little while, then Charlie came again and now my sister Anni is here with me. Scarlet's clinic visits have been going well. She has a new attending physician, Dr. Carpenter, well, we've had him before. He is an expert on graft vs. host disease which is comforting if she starts to have anymore skin rashes, etc. Her skin has been clear and she only throws up occasionally now-still keeping our fingers crossed that she will stay that way.have to give her her GCSF shot...looks like weekly but is really as needed. Fortunately, it is a little insulin needle now and not one of the big needles I used to poke her with. She does really well with it. She is still on a handful of medicines and her IV meds as well. I used to run her IV meds 2xs, morning and night and now just morning with a hydration bag before and after her foscarnate. They decided to switch because she is accumulating a lot of phosphates and they don't want to strain her kidneys. She still has CMV, but the copies are low. Hopefully they won't rise with only one anti-viral dose a day.
She had to have a blood transfusion again on Sunday which meant an all day clinic visit at Children's. Her platelet counts have been staying up on their own now and it looks like she won't need another platelet transfusion, hopefully ever. Yesterday was day +50, which means only 50 more days left and we can leave.
Charlie is still busy working on the house. He's still got a lot to do.
I'm posting some shots of Charlie and Scarlet while we were still in the hospital. They are pretty cute.

Little Froggie

I wish I could say bathtime was as fun now as it was in the hospital. We no longer have the cart with the baby tub on it. I now have to bend over the bathtub like every other mom in America. I noticed I have some bruising on my rib cage frm leaning over the edge. I must be doing something wrong. There has to be an easier way to give baby a bath without being in pain the whole time. Ok, so if you know of one...then it is your moral obligation to pass on the secret of easy bathing. : )
It has been fun seeing Scarlet start to play with bath toys. She has two little rubber duckies from Halloween, a vampire and a frankenstein duckie. Pretty funny. These are pictures of her in her froggie towel. So stinkin cute!

Tagged!

I was tagged a little while ago and am just getting around to filling it out...

1- I'm afraid of the dark and I can't sleep alone. Even before I got married I would have my sister sleep in bed with me or somewhere very nearby. I thought by now I would be over it, but no. When my sisters were here a few weekends ago we played sardines in the dark in the ghost basement and my little 8 year old niece had to hold my hand the whole time!!

2- I just realized I have chronic allergies. I still can't believe I never realized that my nose never stops running. It didn't occur to me until Scarlet was diagnosed and I became more aware of everyone sniffling and realized that I never stop. I started taking some claritin and it makes me super wired and feel not hungry for most of the day...very cool. J/K I stopped taking it regularly and just deal with the symptoms...it apparently never bothered me before.

3- I think I have a mild form of ADD. I can barely make it through a conversation without zoning and thinking about something else. It isn't until someone poses a question to me that I wake up and realize I missed all of the important stuff they just said. Which has been a real challenge for me with all this Scarlet stuff. I freaked out in the beginning because I was terrified of missing something...I've been doing pretty good, just have to focus more. The upside to this is that I don't have a gossiping problem because I have trouble focusing and my memory is pretty bad anyway. Your secret is safe with me, I think, I can't remember. : )

4- I have a hard time writing emails it used to be just letters, but now it is both. I love reading them, but I hate writing back. I would much rather talk on the phone.

5- I hate scary movies. I get so scared. I couldn't sleep for days after watching the Ring. I watched a lot of scary movies as a kid and I think that is where the can't sleep alone and fear of the dark stems from.

6- I really enjoy cooking and baking. After watching the food network religiously for the last 6 months I am inspired to start learning new, healthy, recipes. I made a really good zucchini, onion, tomato bruschetta the other night...yummo! : )

Hospital No More

I did it again!! Sorry, we actually got discharged from the Hospital on Sunday. We're now staying at the Ronald Mc Donald house nearby. It was really hard the first day and night. I cried a lot. I've been on my own trying to remember her med schedule, IV schedule, feedings, etc. Plus, we had basically just bagged everything at the hospital to bring over and I was trying to make sense of everything and balance her stuff. Pretty crazy. But, the second day was better, once I got a routine going everything has been a lot smoother. We now have to go to clinic visits twice a week...which is actually deceiving because she still has to go in randomly for blood draws and whatever else they want me to do. For example, we spent 8 hours at the clinic today for her IVIG infusion which she will get once week. It takes about 5 hours. We had some good napping today! Altogether though, I love being out of the hospital. It is so nice to be able to eat decent foor again. I've been watching the food network for the last five months...Ramen just doesn't cut it anymore. Scarlet is doing really well. She had some signs of the GVHD and it has pretty much cleared up. They are talking tube feedings again, I'm still fighting it really trying to get Scarlet to eat more. She did really good today, hopefully she'll keep it up.

By the way...sorry about the sideways pic... : )

Happy Halloween!

What a fun day! Scarlet was a monkey for Halloween, if you couldn't tell. Some people kept calling her a bear. We had so much fun at the Halloween party the hospital had. Lots of people donate things like books, etc to the unit. So there were a lot of treasures...among some good candy, I scored a Bobby Brown lip gloss...very cool. All the nurses dressed up as butterflies...with the exception of a few. Everyone loves Scarlet there because she was the youngest bone marrow transplant kid and is just so stinkin cute. The two people holding her are the PA's that took care of her for the last month. Natalie is so much fun. They all rotate months and we've been lucky enough to have had Natalie for a couple of them. Rabbi is the other guy and he is from...somewhere in the Middle East. He's always saying he loves Scaaaaalet...I'm not making fun of his accent or anything, just the way he says it is pretty funny. Super nice guy. We have a pumpkin, but it never got carved. It's pretty big too...I'm thinking it's time to learn how to make pumpkin stuff from a real pumpkin. I hope you fellow bloggers post some pics of your Halloween. It's so fun seeing all the different costumes!

Roll Over Baby!

Here is Scarlet with her occupational therapist. She hates tummy and side lying. She spent most of the time screaming. I'm glad I got a couple shots of her not throwing a fit. Charlie comes today! He hasn't seen Scarlet in a month! I'm excited for him to see how big she is getting. I'll hopefully have some shots of us together. I took Scarlet out on a walk yesterday for the first time and it was so much fun. It's like a 7 minute walk to the RM house so we walked there and hung out for a little while. Her head was zooming around everywhere just looking at everything she'd never seen before. She was pretty fascinated with cars. Could have just been the noise they made but I couldn't get her attention at all while we were walking. The RM house is pretty much right next to a really nice bike and walk trail, hopefully we'll get out more often.

My two older sisters and their kids drove up last weekend and so I was able to get my mother-in-law to stay the night with Scarlet so I could go and hang out with them and family. There were 5 kids altogether so we went to Chuck E Chees...I couldn't have had more fun. Now, maybe it was the fact that I've been holed up in the hospital for 5 months or it really is that cool. I had so much fun!! We played games, got our faces sketched and a picture with the mouse on the car...it was so fun. There were a lot of us there which made it all the more fun. My favorite game was the dance dance thing. Not very good, but so much fun!

Big Girl!

Our Scarlet is growing up so fast! She has started to like playing in her...I don't know what it's called...sitting thing. She even started sitting...I keep forgetting to write some dates down in her journal I'm keeping for her so i'll go ahead and say she sat for the first time on Oct. 14th...for like 2 seconds. She's really good now. She's even fitting into her 6 month clothes. Pretty exciting. She's still hanging out around 13lbs 6-9 oz which is ok for her. For a long time she wasn't even on the growth chart. She had her own little curve going on below the grid but now she is making her marks on the red lines, except in length. She's a shorty.

Hickman Line

The drs are getting close to discharging us and I've been thinking about what it will be like to get out of here. I've done so many things most parents never have to do. I've given Scarlet shots, hooked up meds to her hickman line, given her fistfuls of medicine, changed her dressings, held her down for her spinal tap...this stuff doesn't scare me, I'm pretty comfortable with it. But I'm terrified of going to the Ronald McDonald house and being alone...I mean I actually have to take care of her myself. I feel like I am taking her home for the first time ever and don't feel like I know how to take care of a baby with special needs in a normal living environment. I know I can do it, it just means change and adapting to the new environment. Anyway, just thought I would post some close up shots of her Hickman line for those of you who have never seen one. I thought her bath picture was pretty funny too. I've finally figured out how to give her a bath with her lines in on my own, makes me feel a little more independent! She'll keep it in for the duration of our stay here and if all goes well they will take it out before we go back to Wenatchee. Scarlet will be 7 months here in a week or so, I can't believe how old she is! I really can't believe we've been in the hospital so long away from Charlie either. The things we have to go through sometimes...
It's a beautiful day today and Scarlet is doing super well! Thank for the thoughts and prayers!

Sing My Angel of Music!

I love this picture of Scarlet. It fits her so perfectly. I don't know how other babies are compared to her but man can she shriek! Her baby talk is comprised of shrill sqwuaks and squeals. It's hilarious! That is when she isn't doing it right into your ear. I love seeing her go through stages it is so fun to see how she communicates.

Yummy Carrots

Scarlet's first time eating solids. I didn't know you were supposed to start with rice cereal. Even with all of the Drs. here you would think I would have asked or something. I just got really excited when they told me I could start her on them. I was anxious to start her to try and see if maybe that would encourage her to eat more. She hasn't been meeting her daily intake goals and the drs kept talking about an NG tube again, they don't really anymore because I tell them everyday not to even bring it up. I really don't want to have her go through that again. She was only 5 1/2 months when I started her and she just wasn't ready. She didn't really know what to do with the food and didn't seem thrilled by the taste either. I've started her on rice cereal and she seems to actually like it...I made the mistake of tasting it. So nasty!
PS: Pears are a lot like prunes.

Happy Transplant Day!

These are some pictures of Scarlet's Happy Transplant Day that was Sept 18th. I thought it would be cool to put up a picture of the marrow. I had no idea what marrow would look like. The marrow came the same day as the radiation and had to be filtered for any bone fragments. It is just marrow and red blood cells. Her hematocrit levels were through the roof and she was bright red for days. The picture of Scarlet in the crib is her right after radiation. She, fortunately, didn't have to have any chemotherapy as originally planned because of her cytomegalovirus (CMV). She only had to have a small dose of 2-gray radiation which didn't even give her mouth sores like so many other kiddos. We have been so very blessed. The last picture is of Scarlet actually getting hooked up to her marrow by her nurse Katie. The marrow was given through her hickman line and infused over 5 hours. The whole event was anticlimatic but the nurses came in and sang her happy transplant day and Charlie and I bought a couple pieces of cake to celebrate. It was a really happy day for us, it seemed it would never come.

Central Washington Hospital

I realize now that I should have done things in a consecutive order but...too late now. I was going through some pictures on file and found the ones from Scarlet at CWH before she was transferred to Childrens. She had so many pokes and prods. It's crazy to look at her now and see the difference. She is so huge compared to then! She's a champ.

Scarlet's Blessing

Scarlet was admitted to Seattle Children's Hospital in May, at not quite 6 weeks. She was blessed on June 15th by her daddy. Her baby blessing was a little unorthodox but special all the same. We had the bishopric come and participate in the blessing and some family and friends. Scarlet was on the medical unit then and the precautions were different than they are now. Everyone who wasn't around her on a regular basis had to be masked. They were also gowned and gloved if they were handling her so you can see in the pics those who were and weren't. Her blessing dress is so beautiful but way too big! She'll probably be able to wear it when she's five!

Severe Combined Immunodeficiency

Many of you know by now that Scarlet had a bone marrow transplant on Sept 18th because she was born with Severe Combined Immunodeficiency (SCID-ADA). We've been at Seattle Children's Hospital since May and will hopefully be able to leave the hospital soon and move into transplant housing nearby for the remainder of time until we can go home. You have to stay 100 days post transplant either in the hospital or at Ronald McDonald house. She's had a few complications along the way and has delayed us getting out of the hospital. I'm excited that she is doing so well and life seems a little more hopeful. It is still too early to say just what her life is going to be like post transplant but we know that it would have been short without it. These pictures were taken sometime in May or June. She had to have a Nasal Gastrointestinal tube placed because she had a type of pneumonia that made her tachypneac. Her respirations were so high they were worried she would aspirate milk into her lungs and she would tire so fast that she couldn't eat enough to gain weight. Poor baby!

Onward Blogging!

So, it's nearly 1 am and I am beginning our blog. And I'm wondering to myself if it was really a good idea to even have a blog and if I just spelled beginning right...it's 1 am. I'm not really sure if anyone really even checks these out or if blogs are really ways to keep your own personal history out in webwonderland for your future posterity to enjoy. We'll see. I probably shouldn't be writing anything being it is so late and I really have no idea what I am doing. But I checked out Megs site...I guess that answers my question about people checking out blogs because I've looked at a fair share myself. Anyway, I checked out Megs site and saw that you can do all kinds of fun things with this blogging business. I feel inspired. Meg, however, is very savvy and I am not. So, we'll see. This concludes blog number 1