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Everly's Journey

We are going to do updates when we want to about Everly both to keep everyone updated and so she can look back on this in a few years. read about page

Latest journal entry

Finally some normalcy

Well, as everyone knows we finally made it home. The last surgery was pretty awful, but it was always in the back of my mind- how many times can you cut someone open before they get an infection. I suppose it was inevitable, but Everly fought through it all and got past it. She finally lost her last med she was weaning off of to get through the withdrawal the beginning of this month, and she's been doing great all things considered. She still doesn't have all her strength back, before the surgery she was able to sit up mostly on her own, and she would stand under her own power if I held her hands. We're still working on getting that strength back.

Erin was going to get fired if she didn't go back to work, so I quit my job and am now staying at home with both kids during the day. We're not really sure when I'll go back to work, Everly has 5 meds given 8 times a day, so we cant really send her to daycare on that kind of schedule. I've been working with Everly every day trying to help her get her strength back, giving her tummy time so she'll start crawling, and helping her sit up on the floor. Her strength still isn't where it was prior to the surgery, but we'll get there in due time. Her "exercises" are actually more work for me than I anticipated, every time I get on the floor to work with Everly, Hudson thinks its rough housing time, so I end up playing "dont let Hudson kill Everly" sometimes lol. I do enjoy spending more time with the kids, I always try to make a point to spend some one on one time with Hudson every day playing play dough or legos or whatever he wants to do, but it seems all this time at the hospital with Everly has turned her into a "social butterfly" as Erin puts it. She does not like to be alone very long before I hear what sounds like a kitten yelling from the living room. 

Well anyway, I just thought I would post something quick, I stay up til midnight every night to give Everly her midnight meds and feed her, not much else is going on at the moment. We see her cardiologist for the first time on the 24th, Erin and I are both eager to hear how long he thinks he'll give Everly before he wants to cath her. This year? Hope not, but its gonna happen. Anyway, gnight