Well.....today was a Lauren day...so Haven was exhausted and sound asleep by the time I got home around 6pm. She slept until 7pm when I woke her up to have some dinner. All a normal night until she decided she was gonna have a spurt of energy. She never plays so when she does we feel like she's a newborn learning to walk. I had the video going of her wrestling around with dad and then she started jumping all excitedly. Not even 20 seconds of jumping and she just fell to the floor. She couldn't move and she was just grunting.
We were next to her in a milisecond but it felt like forever. We got her up after a few minutes and had her lay across the chair. Her back was hurting her. It had to hurt pretty bad as Haven doesn't really feel pain due to her condition. She really doesn't know pain like a normal person so I knew it was bad.
I rubbed her back for a long time and dad kept talking to her to make sure she was ok. She couldn't stand up for a few minutes so we kept her stretched over the chair. After a while of rubbing she was able to stand up and walk. I got her in to bed and made sure she had a lot of pillows around her. Dad stayed with her for a while.
I talked with Vanessa about it and she mentioned that her son Josh used to have the same issues. She used to use a lot of pedialyte. Which I have read that electrolytes and dehydration are a major issue with ROHHAD. So we will be stocking up and loading the baby girl up.
Thanks for the tip Vanessa - it is really awesome having someone to talk to about this and who is very well experienced in what should be done. :)
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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 told Joshua's night nurse about what happened yesterday and she said another thing that may be going on is Haven's cancer could be eating away at her protein. She suggested more meat and beans (anything protein) in her diet and see if that helps.
ReplyDeleteThank you. We cut her sodium intake by under 200 mg a day so I know she doesn't eat very much meat or beans. I will let her dad know - he makes all her food special for her. We did get the G2 and Propel. Seemed to liven her up last night. Her eyes were brighter and less dark circles around them. thank you
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