Sunday, 12 August 2012

Day 45 (sort of)

I started writing this post around day 45 so that's what I titled it because I didn't update it with the last week and a half events. I will try to do that in the next day or so, no promises. :)  Day 45 was August 1.

Things are pretty good. Millie's stomach pains are not as frequent as it use to be. It's hard to notice the differences day to day, but if I think back to last week I notice a huge improvement in how she is feeling. Millie had clinic on Wednesday (Aug. 1)  and the doctors are happy with her progress, we will go back in tomorrow for another check-up. She did lose a little weight so I have to make sure she is eating more this week or she will have to go back on TPN. It's a battle every meal and she complains about stomach pain the second anything hits her lips. I am starting to wonder if it's more nerves. Eating use to always make her sick, so now my thought is she has that in her head and she's scared. I would be if I were her. I can do most kinds of sick, but stomach pain is the worst and she has been feeling this way for about 2 months. Can you imagine having chronic stomach pain and what goes along with that for 2 months straight?!? No Thank You!  She did make it a whole entire day with out complaining about her tummy on Saturday. It was amazing! I felt like she made a huge jump. She did get a little sick here and there on Sunday, but she is showing improvement and that's all we can hope for.

I have eased up a little and have let her play with the neighbors a couple of times this week. It makes me nervous, but she has been so down. I know she needs to have some sort of normalcy in her life. When we are in the hospital she knows she can't play, but at home she looks out the window and all the kids are out in their swimsuits playing in the water and riding their bikes. I try to distract her from our kitchen window because I don't want her to see them out there and ask me, "Mom can I play?" It makes my heart ache. Today is the last day she takes one of her many medications, Micolphenelate, and I can't wait for her to come off of it (this happened on her day 45). It is one of the anti suppressants so I feel like I can trust her own immune system a little more after it's gone and she has some time to recover from it. She will still be on her main anti suppressant, Cyclosporine, for awhile, but ever pill we come off the better.

We can also see shadows of hair starting to grow and it's dark! Her eyebrows are going to be huge and it is looking like she will take on one of the main side effects from her medication, being extra hairy. We will have to wait and see but I have seen some really hairy kids after transplant and it's everywhere. I talked to her a little about it today, because I want her to be prepared for the day she wakes up with a uni-brow and hair on her cheeks. She took it pretty well I thought. It's seems like such a small thing in comparison to the other possible side effects, but it's the small things that put her over the edge right now and I didn't want it to be a shock. The hair will fade in time if it comes, so it's really not a big deal, but in her 6 year old mind I don't know how it will affect her. Her hair also seems very dark but I don't know if that's the meds or not. Last time when her hair came back it was white it was so blonde and got darker as it grew. This time it's very dark brown. It will be interesting to see if it stays that way. We were told that she may take on the hair color of her donor so it's possible that we will have a very different Millie. She said if it came in a different color then before that she wanted it to be red, not orange, or light red, but dark red like her friend's mom. She has it all planned out. She has also mentioned that she can't wait to dye her hair green with blue stripes....

We have been able to do a little bit more and it's been so nice. We went for a drive up Big Cottonwood Canyon and Little as well.  We don't push it and stay long, but it's relieves a little tension for all of us to get out of the house for a bit. Brady also took Millie to go see Brave finally. She loved it. Seeing a movie is probably not on the top of the list on things we should be doing, but we played it very safe. Amelia wore a mask the whole time unless she was eating popcorn, which we popped at home for her so we knew it was safe. Brady also bleached the seat and armrest the best he could and then covered it with a fitted sheet. He went Sunday afternoon to make sure there were a minimal amount of people there and it worked. I think he said there were 4 others in the whole theater. They also sat on the side, in the back away from the main areas. He said it was so worth it and that she laughed hysterically the entire time. I'm sad I missed it. I love taking her to the movies just so I can hear that laugh.

All in all, I feel like this is all becoming a little easier and every day that is done is a relieve. Today brought a milestone with only having to give meds at 10 am and 10 pm. Goodbye midnight dose! I won't miss you and I hope you never come back! Now if we could get her off her IV fluids at night.

Big Cottonwood Canyon

 Playing on her new swing set


Phoebe said...


Anonymous said...

I'm so glad to read this update! I'm glad things are getting a little easier for all of you. Hugs to everyone! - Miss Patti

Jesse C said...

You are all so great.

Shawna S said...

What a great update!! Just signed myself and my 2 daughters up for the walk.. they're so excited at the thought of maybe getting to meet Miss Millie.. they're always asking me to check for an update and praying for her <3