Last night was another one of those sleeping in the chair nights as she didn’t want to be put down. She’s been a little fussy … maybe because she’s working on getting two teeth to come through or maybe because her counts have been so low.
When the nurses came in and said her ANC was 160 I was completely shocked. I didn’t expect it to jump that fast. We did a little happy dance and Shyanne laughed and giggled.
It might not be a real recovery yet but if it continues to improve then we will be on our way home soon but I’m trying not to get too excited as I know a lot of things can happen.
We’re still waiting on the doctors to round but Shyanne’s had a good morning so far. She was very interested in eating breakfast and ate about half of the oatmeal I had made for her. She also had some dry cereal and yogurt snacks.
After breakfast she took a very short nap before waking up and wanting to nurse. Child Life came by and she got her a cold teether … she left a couple more in the refrigerator for her too.
Shyanne got weighed and she was 7.76 kg. She’s down from 7.85 kg at admission but she’s not lost as much as she did the last time we were here. Go Shyanne!!
At 10:30 I got her a snack ready and I attempted to give her a little bit of prunes but she promptly threw it up. I’m not sure if she might have gagged herself with the food, the teether, or her fingers but she hasn’t done it anymore. She’s been snacking on dry cereal and cheddar puffs while watching some animals on TV.
She’ll either play on her play mat or watch some ‘Signing Times’ when she finishes her snack… I’m not sure which yet as I’ll let her decide when she’s ready.
When the doctors came by the checked her out and said everything looks good. They did mention that we could still see a dip in her counts and that is normal. There is no way to predict how long they will stay low or how long before they return to normal. She’ll have labs done daily for now to see how she is doing.
I also asked again about the four copies of chromosome 21 (Down Syndrome has 3 copies) that have been seen in some of her cells. I don’t know that anyone has any answers as to why they are there or how they might affect her recovery but I just felt like I should ask again.
We also need to keep a check on her mouth to see if she develops any sores… we do her mouth swabs 2-3 times a day. I also try to get her something cold to drink/eat every so often too as that has been shown to help sometimes.
We also need to keep an eye on her bottom for any sores. The chemo can cause sores from her mouth or anywhere along her digestion track. I try to change her every 2-3 hours and I wipe her down and use diaper cream with every change.
During chemo and for 48 hours after the last dose she is considered ‘toxic’ and anyone changing diapers needs to be extra careful. They also recommend for everyone to wear special gloves during diaper changes or when cleaning up any vomit.
If she develops any sores they will be extremely painful, may bleed, and may take a long time to heal due to her counts being so low. We are trying to prevent them as much as we can.
Child Life also came by again with a crib mirror for Shyanne to use while we are here. She was having fun making faces until she remembered another toy she had in her bed.
Daddy and I had recently been talking about getting a mirror for her play area. I’ve already added one of these to our wishlist and will try to get one soon so she has one at home.
The social worker also came by and I finished up that paperwork from a couple of weeks ago. She also dropped off a couple of gift cards that had been donated. One was for Starbucks (they have one downstairs) and the other was for Publix. We’ll definitely be able to put these to great use although I’ve never actually been to Starbucks.
That reminds me that I did install the apps for the restaurants downstairs and I gave one a try the other day. It went pretty smoothly and I didn’t have a long wait when I got down there. This coming from someone who hates using the self-checkouts.
Shyanne played on her mat for a while today. She is getting so strong and she just amazes me everyday with her determination.
This afternoon I got a call from Shyanne’s insurance letting me know they had approved her for stem cell therapy/bone marrow transplant, if needed. They have a wide range of services and I couldn’t quite comprehend everything she was saying. I guess I was in a bit of shock even though I knew we had started the process. It’s not a definite thing but this call made it seem so.
I just keep reminding myself to take it one day at a time though… breathe in, breathe out. She had a lot of questions and I think I do too now so I might see if I can talk to someone on the transplant team tomorrow.
She also wished Shyanne a happy birthday because it’s only two weeks away. I about started crying because it feels like she shouldn’t be a year old yet. We haven’t even really had a chance to enjoy her being a baby yet… I’m cherishing every minute with her right now because she is growing and learning so fast.
After the call we helped Daddy make a birthday cake for Sissy (her birthday is tomorrow). She brought us a piece this evening and some brownies and pizza too. She’ll be leaving us soon and we will miss her. She’s been such a big help with the kids at home and that’s helped me to be able to concentrate on Shyanne here.
We also FaceTimed when they sang Happy Birthday and Shyanne loved seeing everyone!
She’s actually sleeping in her bed right now so I’m going to try to get a little rest here.
We thank you all for your continued prayers!