Monday, August 9, 2010

First week home.

Things have been busy around here. I've been working on writing this for a week.

This whole ordeal we've been going through has brought us so much love and really showed me how awesome people are. I am so amazed at all the support we've been receiving. I had several friends bring us meals while we were still at Evans. Two of my friends even offered to take Penny for a while and nurse her because she doesn't take bottles. People sent cards, balloons, and packages. Friends called, visited, invited me over to talk, and offered hugs and ice cream. I've received hundreds of comments from random people wishing Joon well, and countless people have prayed or chanted for her.

And then there were all the volunteers at the Children's Hospital. Almost every day, kids came around with a cart, giving away coffee, tea, and popcorn. One day, they came by with wagons full of donated blankets, and Joon got a Nemo quilt. We had many visits from the super sweet dogs in the Prescription Pet Program. A Harley Owners Group hosted some pizza parties, and a barbeque where they let the kids sit on their motorcycles. And one day they even had a massage therapist giving free massages!

A lot of people have asked if they can do anything to help us. Well, I think the best thing would be to send a card or letter of thanks to the wonderful doctors, nurses, and other employees at the Children's Hospital. Or if you're crafty at all, consider making a blanket and donating it in Joon's name. If anyone does make a blanket to donate, I'd love it if you'd snap a picture and show me.

The address for the hospital:

The Children's Hospital
13123 East 16th Avenue
Aurora, CO 80045


Joon got discharged from the hospital last Monday. It's so great to have Joon home. She's so much happier here, and that helps her recovery. It's so nice to be in our home, sleeping in our own beds, and making our own meals. Joon is glad to have all of her books and toys (including her new kitchen my mom bought her). She was excited to see the cats and fish and turtles again.

Joon's doing great. She's pretty much back to normal now. She's walking normally, running, jumping, going up and down the stairs, etc. She's eating and drinking. She's just having a bit of trouble with her fine motor skills, and she's still not talking yet. She's babbling a lot, and trying to learn to talk again. I'm still trying to get her speech therapy set up. Tricare is being stupid about it and making it a huge hassle.

Joon still has her PICC line in, because she had to get two more doses of rituximab and that has to be done through the PICC. We have to flush it a couple of times a day, and have to have a nurse come out to change the dressing and everything. They sent us a big package of supplies, hundreds of syringes and tiny bottles of saline and heparin. It seems so wasteful to me that the syringes are all single-use. I understand why they can't be reused with the PICC line, but it's still a lot of syringes to be throwing away.

On Wednesday, we had to go back up to Denver because Joon had an appointment with the rheumatologist that's going to be in charge of her care now. One of the med students that worked with Joon when we first got to the hospital is now with the rheumatologist, so she knew how bad Joon was before. They were pretty stoked to see how much Joon has improved. The rheumatologist said she's worked with about 10-12 kids with NMDA encephalitis, and they had the same treatments Joon has been receiving, and all had complete recoveries. She's really optimistic about Joon.

Friday we had another appointment, for Joon to get her weekly Rituximab infusion. She gets that through her PICC line, and it takes a few hours. We had to stay another hour after that was done to make sure she didn't have any reaction. The appointment was at 8AM, so we had to get up really early to leave the house at 5:30, but the kids slept the whole way there. After the appointment, we went ate lunch, and then walked around the mall for a while. We'll have to go back this Friday at 8 AM again for her last infusion.


Penny is growing so fast now. She's rolling all over the place, and always pushing and kicking so much. She's still working on those two teeth, and so she drools and chews a lot. She babbles all the time, and she laughs with this ridiculously cute laugh, it's like she's yelling "HA! HA!"

She loves to stand. We have this exersaucer thing that was a gift for Joon when she was a baby. Joon would never put up with things like that, she needed to be held constantly, so we never even took it out of the box until now. Penny has been using it now, and she loves it! She can't reach the toys yet, but she likes to look at them.

Penny has been sleeping through the night since we've been home. She was doing pretty well while we were in the hospital, but now she's doing great! She went to bed at 8 last night, and slept until 7 this morning! I just hope it continues this way. She's also been napping well. She generally goes down easily when I swaddle her.

She is sucking her thumb now, which is so cute. She has learned to grab things, though she doesn't quite know how to let go yet. She swipes at toys, and she has discovered her toes. When I'm changing her diaper, she helps me out by grabbing her toes and lifting her butt up in the air.


I'm thinking of starting Elimination Communication with her. EC is when you follow a young baby's cues and get them to use the toilet. It worked really well with Joon, but I didn't think we'd be able to do it with Penny because our attention is split between the two kids. I'm going to get a cheap little potty chair, and try it out. It can't hurt to try. She seems ready for it. Actually, I probably should have started a long time ago, but you know, we've been busy.

I'm so glad she's such an easy baby. Joon was very high-need, and I don't know if I would have been able to survive this last month if Penny was as needy as Joon was at her age. I am so lucky to have a mellow baby while I REALLY needed her to be so. It's so great to be able to put her down in her crib and have her go to sleep! I was never able to do that with Joon. Even up until she was two, she had to be nursed to sleep in our bed, and then I'd try to slip away, and half the time she'd wake up and I'd have to start over again. She still occasionally has a fussy night, but overall she's so easy.

Penny is almost 3 months old now. She'll be turning 100 days old in just a couple of weeks, which means we'll be celebrating her Baek-il! The Baek-il is a Korean tradition, celebrating a baby's 100th day of life. In the past, the infant mortality rate was so high, it was a pretty big deal for a baby to survive the first few months. Penny's Baek-il is on the 22nd. We will be making Korean food, and a birthday cake.

1 comment:

  1. What an amazing update! So glad to hear she's home and doing so good. What a mighty God we serve:)) After our adopted daughter came home from India we spent the first year doctoring at a hospital about 2 hours away from us so I can understand a bit of your experience now. Hang in there~ this too shall pass and one day you will look back and see all the miracles that were involved.