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Harper's arrival and journey into life

Latest journal entry

Aug 1

Quick update - We are home! We were released Tuesday and have made it to the house. How is she? That's a popular question and one that I don't have a good answer for. She's doing better, and being at home helps. Overall we are seeing a lot of normal things for her, which is good! However, there is no way to put a finite stamp on her condition. When it comes to the brain, anything goes. We will just have to monitor as time goes by to see if there are any new quirks, anything missing, or whatever else that may appear. It's going to be a slow process. So far she's been really tired and sleepy. This could be from the medicines as well as the new ones she is taking. We hope that goes away in the next few days. We do now have an emergency kit at home if she goes into another seizure and can't come out of it (I don't know why they didn't give us one before, but anyway..). We are seeing smiles and hearing her oooh-ing so I feel good we can get back into what we know as normal life. I have woken up at every little sound, though, just skiddish after what happened. Hopefully that passes with time.

We have had some equipment issues, the biggest is that the feeding pump died today. We went to such great lengths to get this one and I don't know if we can get another one through the supply company. From what we are being told it's a no so far. They are still working to see if they can come up with one. We already have two of the other brand of pumps but neither of them will push her thicker foods correctly and it's constant alarms. Those make for miserable nights when you're up and down all night long. 

Thank you for all the prayers and comments this past week. It was a rough one but we continue to be sustained by everyone encouraging us through it all!

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