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Monday, June 28, 2010

Avery's Song

Thanks to Rob for helping me post the song on the website. Nana had the song made by a group of musicians that do so for sick kids. It was quite the catchy tune I think and Avery loves it! We sing it to her all the time and we even have it as a ring tone when Nana calls!

Avery started her 4th week today....still doing well and no noticeable side affects. we hope to continue down that road as it is much easier than the one we were on for Chemo. I spoke today with the Johnson County Infant Services coordinator and we'll be setting up times to do evaluations when we get back to KC. This group will help us continue her development once we are back in Kansas. The walker is of course...still not here. The one that was ordered was on back order and they found that out last Tuesday....which means the walker won't show up till we leave FL -- that's my luck anyway so its no surprise.

Avery moves up in the time slots for radiation treatments starting on Thursday. Her friend Megan is done tomorrow and the other little girl ahead of Avery has to be hydrated prior to being sedated so she can't go first....that means we have to be there at 7:15 am moving forward....THANK GOD Jeremy is taking over next week! We all know how hard this would have been for me....The good news is that she will probably be done with radiation by 10:00 each morning and have the day with Daddy! Yay for Daddy!

Jeremy, Brian and Jeremy have been working so hard this last week on finishing up the floors. From the pictures he sent on the phone, it looks amazing. The carpet they tore up was absolutely disgusting and it is so good that we decided to do it. Avery's counts will be susceptible to dropping again and the last thing we need is for her to catch something from the bacteria in the carpet. We appreciate all the help Brian and Jeremy have given to help us get this completed prior to her coming home. What a huge relief!

Nana comes tomorrow and we are so excited. She is not going to be very happy when she trades in the Frozen Tundra for the Hot & Humid....but we can't wait! Aunt Lindsay was a great time this weekend as well...belly bump and all, the 4 of us (baby rau) had so much fun! Aunt Lindsay even helped us craft for a while!

I called St Jude to check on our schedule for the week we are there in July and it looks like we have our appts lined up for Wed-Fri. The only one missing is the eye dr appt so we are looking into options that don't include us spending the weekend in Memphis....we'll see what we can do about that.

Well, its about time for her to eat and I better find something good!


Sunday, June 27, 2010

Avery's Song is going platinum

Thursday, June 24, 2010

My BF Harper Visits!

Avery had an absolute blast hanging out with her buddie Harper this week. She loved trying to keep up with him and the two of them were throwing out hugs and kisses like it was their day job! We took them both to the beach yesterday and let me tell you -- 3rd time is a charm. Miss Avery was ticked off every time I would pick her up and bring her back to the blanket. She literally spent all afternoon crawling in the sand by the water and threw literal temper tantrums every time I picked her up. Now we want a port so she can get wet. Goodness!

Things are still going well in radiation -- no noticeable rashes or skin irritations so that makes things a little easier. Aunt Nikki, Nana Lori and Harper were here for a few days and we really had a nice time hangning out with them. She really needs the kiddo interaction -- her response to them is amazing. In just a bit we are off to pick up Aunt Lindsay and she will hang out with us for the weekend. Tomorrow is the last day of week 3 -- only 3 more to go followed by 1 week at St Judes....home is so close.

I will be switching spots with Jeremy for 2 weeks after the 4th of July. Trying to get myself back together after being away for so long. It will help the transition when we do make it back to KC. I am looking forward to the familiarity of home and the promise of normalacy, but I shudder to think I will sleep away from her - even if for only 4 nights. Since this adventure began in December, I have yet to sleep in a separate room from her, let alone different state. My anxiety grows each time I think of it. I guess I'll do my best to keep it under control and then let Tylenol PM take care of the rest! I am also very anxious to have the rest of our family home....the poor dogs are so confused, although having a great time with their perspective foster families.

It seems like we are so close to being done, but then we are reminded that this first part -- chemo and radiation are merely the stepping stones to years of treatment. Her Oral Chemo will start at the end of July and continue through next February. The boob tube will stay in place until next May....all reminders of the long road still ahead. Good thing my munchkin is such a trooper!

Thank you to everyone for your continued thoughts and prayers....we love you all~


Friday, June 18, 2010

New Friend, New Prayers

Today was Avery's 10th radiation treatment and she is still doing well. She seems to perk right up after each session and wants to eat right away. She is up to 19.5 lbs which is where she was at when we started this whole fiasco. I feel like we've hit baseline now, course now our goal is 22lbs. Cheetos and Ice Cream still seem to be the best convincing items to eat, but we are trying to incorporate some healthy fats as well. The OT therapist indicates Avery knows what she is supposed to do in most all cases, but has a hard time with some of them due to her ataxia and weakness. I take this to mean she is brilliant. Which we already knew, but it helps to hear it....well sort of hear it.

Today we heard from a family in KC who just discovered their 1yr old Lucy has a brain tumor. Removal was successful and now they are looking at treatment options. We were lucky enough to connect via a Ryan Lawn & Tree customer that had been following Avery's story. From one who has been there, it was so nice for me to have someone to talk to about the journey we were about to start and I will forever be grateful to the Trysla's for sharing their story with us. We were hopeful that one day we could do the same for someone else....and here it is! Lucy is doing well right now but like Avery, needs all the prayers she can get. So please include her in yours tonight.....I have a feeling Lucy and Avery are going to have a very special bond as the years go by.

Love from the hot and humid land of gators....


Monday, June 14, 2010

Week 2 Begins

Week 2 started today with no concerns. Avery's counts went back up and are hovering in the 800-900 range as they were before. The 4th round really does a number on the kids and her body is having a tough time recuperating...course you wouldn't know it from the looks of her! She has another black eye, compliments of her glasses and a good brush with the floor. Today she also got herself a nice bloody lip from a similar incident. Whoops!

Therapy is going well. I only wish her walker was here already so we could work with her at home each day. She really enjoys the walker and walking in general....definitely motivated to move! Today we climbed through the tunnel and of course she was smart enough to climb all the way to the end and promptly turn around to go back again! She loved it.

One of her new favorite things to do is walk her baby in her stroller and give everyone kisses. She is learning to point out the babies parts....eyes, nose, ears. And she likes to sing the Beach Boys Barbara Ann....gets the "bob bob bob" part going really well. She's also taken to smooching the phone when daddy calls -- I think she knows its him the moment I answer.

We had a good weekend with Steph and Pam Rosacker. They took us out for a really nice dinner and we ate till our bellies burst! We also drove down to St Augustine and saw the sights. The oldest city in the US was very interesting but in 98 degree weather -- we didn't last long. Man Florida is HOT! Angie arrived late last night and we plan to make a fun week of crafts and chatting.


Tuesday, June 8, 2010

Counts Dropped

Day one of Radiation went well....she was a trooper of course and woke up fairly happy and ready to play. She had OT and PT at the new clinic and used the walker for the first time. She absolutely loves it and we can't wait for hers to come in so we can work on walking more and more. She had another radiation session today and it went just as smoothly. Her recovery time was short and she was back to her normal self by 1 pm. We found out some rather annoying news though....her counts have dropped to below 500 -- neutropenic levels which means we are on high alert germ patrol and apartment lockdown again. We really had hoped we wouldn't have to do this again, but unfortunately that last round just hit her hard and she is having trouble bouncing back. Her platelets and hemoglobin are doing great, but the anc (white blood cells) is just not what it should be. We will meet with Dr Bradfield tomorrow to discuss her counts and options (if there are any) for helping her increase the reproduction of cells. Most likely this will be a wait and see kind of thing. We are really bummed as we had hoped to go meet our friends at Paychex here in Jacksonville this week and will have to post pone that visit until she is ok to be around crowds.

Luckily we were able to have some fun this weekend with Aunt Patty....she of coursed spoiled Avery rotten and we had lots of fun! Avery absolutely loves her new Tinkerbelle chair....just like Daddy and his recliner! She spends hours climbing in and out of it. It's a riot. Aunt Jill and buddy Carter arrived yesterday and are entertaining us for a few days. Carter is only 4 months old and was born exactly a year and a day after Avery -- Jan 22nd -- which we think is really neat. Avery is amazed by Carter and spends her time leaning over his chair staring at him and then of course climbing in his chair when he isn't around. It's really cute.

Well better get back to the laundry....poor Carter has acid reflux and urps a lot!!


Friday, June 4, 2010

My New Recliner!

Nana Patty arrived on Thursday and we are having a great time. Not only does she give me lots of snuggles and loving, but she bought me the best toy -- my very own Tinkerbelle chair. I can't get enough of it and have spent all day climbing in and out of it. I feel like such a big girl! Mommy is super happy that I am working so hard to sit in it and balance (since it actually rocks).

We start the radiation on Monday morning, followed by a few therapies in the afternoon. It appears we will be going to the Proton Therapy Center every morning about 10 am and it will take about an hour for the radiation process, followed by recovery time. Radiation will be 5 days a week, for six weeks. Once finished with that, Mommy and Daddy will drive us back to Memphis -- via the Alabama route as they aren't getting anywhere near the Gulf again...and we'll spend a week or so back at St Jude going through all the tests and follow up appts again.