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Saturday, August 28, 2010

Avery has had a great week this week! First we started with our Hearing Aid fitting on Tuesday, which went well. She seems to not be bothered by the hearing aides and we can definitely see a difference in her reactions to sounds and noises. She heard her song I think for the very first time today and I watched as she listened intently as I sang along. The hearing aides are in competition for room behind her ears with her glasses so we are constantly attempting to tuck them back behind there. Jeremy thinks her ears will get stuck sticking out since they are so loaded down! We had 2 slight snags, one of which was the settings were set very sensitive and as a result any time she was being held, in her high chair, or crawling near furniture the aides would emit a high pitched squeal! We have since shifted the settings and are doing much better. The second snag included me and a microwave.... apparently we are supposed to put them in a jar with some little contraption that draws moisture out of them at night. As the contraption collects the moisture, it turns green and then you are supposed to microwave it to dry it back out. I melted it. Whoops. Sure hope they can send me a new one.

The second excitement of the week was the start of the new chemo. This is a daily pill that is given on an empty stomach, followed by no food. We of course attempted to give this yesterday and failed miserably. I mean how do you get a 19 month old to swallow 2 pills? We attempted crushing, which is a no no with Chemo but that didn't work either. Today we tried dissolving in water, but it didn't dissolve entirely and left a ton in the bottle. At this point I'm not even sure what to do. If she'd eat, I'd totally wrap it in a piece of cheese and push it down like I do with the dogs... good thing she won't eat much. So for tomorrow I am thinking of crushing it slightly and sprinkling it on a bite of pudding. So much for not eating. This round is 28 days straight of taking the meds. Hopefully this drug (erlotinib) will have less of an effect on her counts. At this point we are sitting at 1000 ANC. This is much better than 700, but still low in terms of normal. I am really hoping that this next 28 days gives her body a chance to recoup those numbers a little higher before we start round 3 and the 2 drugs that she was on last month again.

Avery and Sharon have been working so very hard on her strength and skills. She is going up and down the stairs on her tummy great! She can color sort and shape sort her puzzles and the kids loves loves loves her baby. We picked up a doll umbrella stroller and then weighted it down with velcro weights and she pushes that bad boy all over the house. She also seems to never get bored with chasing Jersey... good exercise for both of them!

We are anxiously awaiting the arrival of Grandma Lippold. She is coming to spend some time with Avery today while Jeremy and I go out to celebrate our 4 year Anniversary....yes it's only been 4 years. I know we feel like the last 8 months have added on at least 3 more! We are spending some grown up time together while Avery and Grandma have a sleepover. She is really excited!

Thursday, August 12, 2010


Avery's counts have dropped again. They are currently just above 700 and leaving us a little nervous. Hemoglobin and Platelets have also dropped so we'll be watching her closely for the next week. While we aren't on complete lockdown, we certainly won't be taking her out in public anytime soon. Counts are checked on Wednesdays, so until then we'll be on high alert. The good news is that there is a lot more space for her to explore and roam in at the house than we ever had in a hospital room! She has had a runny nose the last few days but I really think its been her allergies that have been doing that. She acts fine, so we'll just keep an eye out.

Her and Sharon have been working very hard on pushing up and going up and down the stairs. They have been practicing identifying objects and pointing as well. This morning I asked her to point to the puppy and she did! Maybe she can hear better than we thought! Babbling a ton as she was before, still no words though. Well we have date to talk to Nana on Skype ...better get to it!


Tuesday, August 10, 2010

One Drug down...1 to go

Avery finished up her first chemo drug this week and is now only taking one for the next week and a half. She will have a week of rest and will be tested before starting the 2nd round of oral chemo. This drug will be taken the entire 28 days of the cycle.

She seems to be doing well on them and has had minimal side affects, mostly being tired. She is a smart cookie and is very pleasant as I give her her normal meds in the morning, but when I go for the ones in the fridge she becomes a tight lipped turd. Rightfully so, I don't believe they taste as hot as her others do. But still -- I bribe her with fruity cheerios at this point.

She has been working very hard on climbing the stairs, much to the exasperation of Sharon! She had no idea this job came with exercise! As I type this Avery is attempting to call someone via the mouse -- everything is a cell phone to her. She has decided the best way to go up and down the stairs is like all of us do -- facing forward and she really wants a railing at her height. Her stitches are still visible but I honestly think it has more to do with the liquid band aide stuck to them than anything else. On Friday we are still on track for hearing aide fittings. I really hope they open up a new world for her that includes the words Momma & Daddy, and maybe Nana as that would just tickle her to pieces. Of course, you all know 3 months from now I may be praying that she stops talking at some point so I can have some quiet time! Ha!

Jeremy and I are getting into a routine for now. I have been back at work for the last few weeks and things are starting to get back to normal. I spend my day trying not to get into too much trouble and at the same time trying to filter in all directions. I am not always successful, but I still manage to keep my job. Jeremy is working hard out in this heat- unbearable in my book but he and the rest of the Ryan family sure are tough. Jersey is happy to be home...I think. This is questionable as she tried to get in the car with Nana when she left this weekend. Maple Jo and Cy missed each other terribly but I can tell she misses her comforts at Aunt Lori's house and her new buddy Blackjack. She spends an awful lot of time trying to devise a way into the house! (and yes the garage has AC)

I turned 30 on Sunday....kind of crazy. Never in my wildest dreams would I have pictured my life this way....a husband that loves me to pieces (even when easily distracted by moving antlers), a daughter whose strength, determination and hugs bring me to my knees, and a support circle consisting of the best of the best, all there to lift me up when I need it. Here's to my next 30 years...may I learn as much in them as I did in the first 30.


Sunday, August 1, 2010

Avery's Party

Thank you to everyone that sweated it out with us on Saturday. Avery's Welcome Home Party was a huge success and we managed to knock her out till 9:15am on Sunday morning! She had the time of her life seeing everyone and playing with all of her friends. It was a truly amazing afternoon and we loved getting the chance to see everyone.

We didn't realize how many gifts you all had brought for Avery until this morning. What a shock when we sat her down to open them up and they were piled around her. She was in love with all the new toys and we thank you so much for helping us make it such a special day for our brilliant little girl. We sure hope everyone had as much fun as we did!

Thank you for all the continued loved and support for our family as we continue down this long road. Being home is the best feeling in the world and being surrounded by people that love and support you - well it just doesn't get any better than that.

Jeremy, Jenn & Avery
Jersey Anne, Cy & Maple Jo