Friday, October 26, 2007
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.
Thursday, October 25, 2007
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!
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.
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!
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.
Wednesday, October 24, 2007
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.
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.
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 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!
Monday, October 22, 2007
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!
Sunday, October 14, 2007
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