(She was wanting to pose for the camera...things we used to do often...yay)
We headed up to SLC again... every Sunday we have our routine. Wake up, clean up the house, pack, leave around nap time (so she will sleep half of the way), get dinner in Draper, go to Treena's, play and play, go to bed around 11:00, wake up around 7:00, drive to PCMC, stay for 5 hours..ish, drive home. Pretty exciting. It's already getting old...bad attitude to have.
Medicine is still a slight struggle. She has been doing better with the 6MP in the watermelon gummy. The septra...not so much. She HATES it in whatever from we use. It is usually a 30-45 min process now. We did try it in strawberry syrup and she seemed to like it a little better.
She gave daddy a gummy while she ate hers... they had to make sour faces.
Her hair... Scott wants to shave it and get it over with. I am still holding on. Everyone keeps saying that she has so much hair still. But it is much thinner. Everytime I brush her hair, a good amount comes out (the pic below). She keeps saying she is ready for a haircut, but I keep ingoring her. I should probably let her do it if she is ready. We are planning a party to do it... all of the boys are going to shave their heads with her. She gets to be the only special girl!!
It has been so nice to have her back to her normal self. She is dancing, singing, and teasing her brother. Yay! It makes things SO much easier. I am trying to implement one behavioral issue a week. This week we are working on using nice words. It's just so hard to follow the "steroid month" because we gave her whatever she wanted.... we had to. Experiencing that is like nothing I have ever had to do. I just keep thinking that we will take it one day at a time and try and get things back to normal.
Things went well at the clinic. She was really emotional this time... not sure why. The port access went ok. She played much better with the child life specialist. We had to wait in the RTU for over an hour... that was a struggle. Fasting until 12pm was not her favorite.
Her labs looked pretty good. We are still waiting on the results from the CSF. I still get nervous every time. There are so many things that can go wrong from all of the different chemos and their bodies going through so much... just trying to think positive.
WBC (normal range 6.0-17.0) 4.8
RBC (normal range 3.9-5.3) 3.48
Hct (normal range 34.0-40.0) 32
Plts (normal range 150-400) 292
ANC (normal range 1.5-8.5) 2.2
She is almost to normal in most of those which is great. I feel like she can have a somewhat normal life while they are good because the next 3 phases (2 months each) will drop her counts.
What a strong girl. Inspiring me every day!
My friend's little daughter who went through the same thing Taleah is going through now, never did lose all her hair. It thinned out, but she never lost it all. So maybe Taleah won't?
ReplyDeleteWe are keeping you all in our prayers.
so glad steroid month is over! yes, her hair looks still thick as ever! even if it is "shedding" I would be in no rush to get rid of it either, like you... such a hard decision! Love ya!
ReplyDeleteSounds like she is doing so well! Those counts look great. She is so strong! What a brave girl she is.
ReplyDeleteI am glad everything went well again on Sunday! She is so brave! That is really cute that all the guys are going to shave their heads with her. You have the greatest family!
ReplyDeleteI love all the pictures, especially the daddy and baby sour face. I'm so happy to hear that she is doing better. I'm sure it is a very hard decision about her hair. It would be for me too. I would hold off, she might not lose her hair. My grandpa didn't lose his hair. He just had some shedding like Taleah. I wish you all the best and I hope that things continue to go very well for little Taleah. Your kids are adorable. Your in my prayers every night.
ReplyDeleteLove, Jenni-Ohio
I can't imagine having to decide whether to shave her head or not. No parent should have to, that being said I don't see any harm either way. It will grow back if you shave it and if you don't she will still be adorable! It would be a very personal thing. Good luck! You all seem to be doing better now that taleah is acting herself. A little laughter goes a long ways still praying for all of you.
ReplyDeleteLove all these cute pictures!! If you do end up shaving her head that is so cute that you will have a party for it so she can feel really special being the only girl!! Love that! Glad things are getting a little easier! Praying it continues to stay that way!!
ReplyDelete