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Monday, July 26, 2010

It's Official

We made it home.

We left a day later than we were planning, but we finally made it home on Saturday evening. The child that was in surgery before us ended up taking a lot longer than they anticipated so we weren't able to get in for surgery until 2:30 on Friday. (yes we arrived at 7am) After the 30 min surgery to remove all of the screws, they hooked her up for her hearing test. We got the results, however they weren't able to compare them to 2 months ago when she had it done so we aren't really sure if her hearing has gotten worse. Bottom line is that she will need hearing aides at some point but until she is talking, we are not in any hurry. We will discuss our options when we go back in mid October and she will most likely have them by Christmas.

Surgery was quick and simple. Two of the feducials had definitely worked their way out of the skull so they had to come out. The other was doing fine, but they removed it anyway. She now has 3 shaved spots on her head to match the bald spot in the back of her head from radiation. She looks like a 3 year old that got a hold of the scissors...but that's why we made so many hats, headbands and bows!

Due to the surgery, they postponed the start of oral chemo and we will begin that on Friday. We have appointments this week to meet with the county to do evaluations and make a plan for therapies moving forward as well. She has been doing really well at home so far. She has all these toys that she hasn't seen since Christmas and boy is she having a ball! We moved all of her stuff upstairs to the big room so she can play on carpet until she has better stability. She still loves climbing, so on and off the couch, her chairs, the stairs -- anything she can pull herself up on. We really need some of those jungle gym wedges so she can climb!

This week we are attempting to ease back into our life, slightly adjusted. I spent all day yesterday packing up outgrown things, rearranging for new things, and trying to make it all efficient. It is amazing how much room her line change supplies and meds take up!! Jeremy worked on the yard and cars of course. And we checked out a new church down in Olathe. We really liked it and they had a great children's area set up - lots of security and like 10 different age group rooms. We are going to put her in with the 6-12 month olds as they are crawlers and much more her speed at this point. They had coffee, which is all it really takes to get Jeremy there so we are set!

We are really looking forward to Saturday and to seeing everyone that can make it. Avery turned 18 months old last Wednesday and so we are celebrating her birthday as best we can. She was cheated out of that 1st birthday party! It's an open house, so come and go as you please and stop over whenever you get the chance! Avery has turned into quite the snuggler in the last few if you crave some lovin' - I suggest stopping by!

Only 2 things are missing from the Christiansen House...Jersey Anne and Maple Jo! They should be here on Friday and boy let me tell you - we can't wait! Cy really misses his girlfriend/best friend. They've been spoiled rotten while we were away so coming home won't be nearly as fun as they think it will be, but we'll try to spoil them just a bit too. It has been great to not have to worry about them the last 7 months and to know they were being taken care of. So a great big "Thank You" goes out to Aunt Lori & Uncle Bob, Rob & Amy, Nana & GJ, and Dan for taking on our other kids!

Jeremy left for work this morning kissing both of his girls goodbye and knowing that a 15 minute drive was the only thing separating us. I think his week will be a great one, no matter how awful the heat is.

We'll continue to keep everyone updated as we go through Chemo these next 6 months. She has such a long road still ahead of her, but we are so grateful that we'll be able to do the next part from the comforts of home. So for now, scans and spinal fluid are clean. Counts are hovering in the 1200 range and oral chemo is around the corner. But the best thing is that my little girl - is home.



1 comment:

  1. Jenn, I don't even know you but I'm a co-worker of Jonnelle's and saw a link to your/Avery's story on her FB page and I've been following your blog and praying for you guys ever since.

    Small world because I figured out that you live in Kansas City as I do and not in MN with Jonnelle.

    Last night I couldn't go back to sleep after my son woke me up and at 3 am I realized that I saw you all at church yesterday! We recently started going to Heartland and love it so I'm glad your fist visit was a good one. Just wait until the main pastor, Dan, returns from sabbatical in a few weeks. He is awesome and so relatable! I was taking my 2 year old into the nursery and saw you holding Avery but I didn't put it together until the middle of the night. It was those cute glasses of hers that I remembered from pics.

    Anyway, small world indeed. I was just touched and moved by what you're going through. Heartland is great so I hope you return and maybe I'll run into you one of these days and say "hi".

    Damita Kolb