Haven had her first day with the “nanny” Shannon today (future references will be her name only – I’m not a fan of the word nanny). I called to check in on them a couple times and dad says they are doing great. Haven is having a great time and they have been coloring and playing all day. Oh, what a relief that is. You have no idea. It’s so stressful knowing your daughter is home bored and wants to be in school but can’t yet and her dad needs to work and can’t leave her until I get home. This is definitely going to help with everything in the house and work. I hope to see lots of smiles tonight and Haven can tell me all about her day. Honestly, I hope she’s worn out. She is pretty rambunctious when I get home now. I’m not used to it.
We’re tapering on the steroids but to tell you the truth it seems as though everything is getting worse with the tapering. Maybe that’s how it’s supposed to be. Haven is more fired up and snappy than ever before. She is constantly, and when I say constantly I mean 24 hours a day, thinking about food. She was even upset the other night telling us that it’s all she can think about and she doesn’t know why. Now she’s on this kick where she won’t go anywhere unless we go as a family. I asked her to go to the store with dad yesterday and she said she can’t go unless I’m there that she wants to be at the store as a family. Yes, it’s very sweet but I think my daughter is sneaky!!! So I said, “well I’m home now, let’s go to the store”. She panicked and grabbed her cards and started yelling that she had to make Thank You cards for all the people that sent stuff to her. She can’t go to the store. So I stayed home and Kris went. Guess what, Haven sat there and made about 15 Thank You cards. She’s so funny.
Oh, I told her she could make her own snack too. J She asked if it could be creamy – sure why not. I think 30 seconds had passed and it was too quiet. I went to the kitchen and the entire tub of cool whip was on top of this very small amount of jello! I of course scooped it off and told her if she went to bed quietly after she ate it that I wouldn’t tell dad she tried to eat all the creamy. She agreed. It was so cute. After the earlier binging she’s been on a super strict diet.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
I think it is great that Haven has someone to be with during the day and I know it helps you at work knowing someone she likes is keeping her happy. Tell Havey for me to be nice and stop eating so much food.
ReplyDeleteMommy I hope you are feeling some better; we have had nothing but rain and supposed to continue right through the 4th of July go figure:( C.
Hey, Misty!
ReplyDeleteThis is the first time I've been to this site (I've not been on the computer for ages). How have YOU been? I hope you're keeping yourself well, under the circumstances. The stress and emotional turmoil must be hell.
I hear you'll be in Ohio next week. It'll be great to see you all!
Take care,
Danelle
Hey Mist; what happened to all the pictures of Haven; I cannot find them. I know Haven has a big day tomorrow; tell her I will be thinking about both of you.
ReplyDeleteMy love to everyone. Gram still cannot move around very well; but says she is feeling better. I think her back is still hurting a lot; she also has Havey on her mind all the time and worried about you.
C.
What are you talking about? What pics are you looking for?
ReplyDelete