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Tuesday, July 27, 2010

Hearing Aides

Avery's Audiology Dr called today from St Jude and she wants to move forward with getting her fitted for hearing aides. Her hearing deteriorated since the last hearing test was done in May. This pushed her over the threshold and she is now a prime candidate for hearing aides. We meet with the therapists tomorrow to discuss her plan for moving forward. Being home is a great help I think and can't wait to see how she develops with the comfort of home surrounding her.

Chemo also arrived today. I was really excited to see the FedEx man outside the door -thinking maybe someone sent something cool. But instead I got a box marked "perishable" and instructions to refrigerate asap. Ugh. What a downer.

Avery and I have a busy day ahead of us that includes laundry and a trip to Walmart to pick up some essentials. We may even swing by our new friend Lucy's house to drop off some much needed headbands and hats...Lucy is starting to lose her hair. We can't wait for daddy to get home as he promised us some much deserved frozen we love our frozen custard.

Can't wait to see everyone on Saturday. One of Jeremy's customers gave Avery a bubble machine -- let me tell you that will be a big hit with the kiddos and we can't wait to break it out! I know everyone already knows this...but just in case I thought I would mention it....if you or your kids aren't feeling so hot this weekend, please save your visit for another time. We will be here and up for visitors any time - so if you aren't feeling 100% - we understand (and appreciate) you waiting to visit. As much as we want to say she is doing good -- she is still on chemo and very susceptible to being sick and not being able to fight off an infection. Oh and we will probably be psycho about the hand washing / hand sanitizing on Saturday -- no offense, I will be asking Nana if she washed her hands just as often as anyone else! Just a forewarning!

Kisses from Us!

Jenn & Avery

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.



Wednesday, July 21, 2010

Change of plans

We arrived, unscathed from our road trip from Florida. It was pretty unevenful and Avery did great. We had to unpack the car...ok well Jeremy had to unpack the meticulously packed car at the hotel in Mobile as they had had multiple break ins in the past few days. Needless to say he was not happy. Then we arrived at St Jude and the Grizzly house was full so they put us back at the Target House. More room, but no maid service.

Avery had a full day of appointments today at St Jude. It was great to be back in a place that is so well put together, although it was a very long day. ANC came back at 1200 - so lower than when we left FL but not dramatically. She has grown an inch and is now 31.1 inches long and weighs 21 lbs. Avery met with the dentist and they scraped her teeth -- yes she had plaque buildup on those 2 bottom ones already. Who knew you were supposed to brush a baby's teeth 3 times a day?! He wants to continue following her as Chemo can affect children's teeth so we'll be back to see him in October. Her underbite and grinding of teeth are all due to stress and not fixable at this point...cosmetics later on I suppose.

Her MRI and lumbar puncture were this afternoon so we didn't get any results before the end of the day. We did however meet with our Nurse Practitioner regarding Avery's feducials and she consulted with Dr Boop (neurosergeon). They decided to take out Avery's feducials as they believe one of them is working its way loose. Normally they would not remove them, but because Avery is still so young, her skull is still soft and not retaining the screws as well as we'd like. Good news is that she doesn't need them anymore so good riddance! Unfortunately, this also means we have to have surgery on Friday to remove them. The plan is to be admitted at 7am on Friday at LeBonheur and she will have the screws removed and her hearing test done at the same time. Anesthesiology will most likely keep us over night so our plan to leave on Friday will be pushed back to Saturday.

Tomorrow we will meet with PT and Speech, as well at the eye dr before getting our results from the MRI and LP. Our Dr is on leave again -- go figure -- so we'll meet with one of the other Dr's to discuss the results. We end the day with a 4 hr behavioral test so we can see if Avery is still behind in development and if so, where. This test is done every year so they can measure the effects of the radiation and chemo. We had it done this spring as well to attempt to get a baseline for her. This is more like playtime for her, so it won't be as bad for her to sit through. Friday will be a long day as they require us to hang out in a hospital room to make sure the anesthesia doesn't have any strange effects on her. Seriously? She's been knocked out more times in the last 8 weeks than we could ever fathom -- I think we got this down. But whatever....those Anesthesiologists are in charge up there...we don't mess with them. To top it off, they have to have a fresh blood draw prior to surgery so she will get poked. Not really too worried about this as she is a trooper with shots but hates to be confined. In KC when this whole project began, they started a line in the ER and let me tell you -- she was NOT HAPPY about being wrapped in a sheet to keep her from moving. We are going to try to do it without that as I think that was her problem more than the poking!

Anyway, I better get some work done...It was strange being back at work last week, but it felt good to have some control back, well to at least think I had some control back in my life. We are really anxious to get done and get home....and to see everyone!


Sunday, July 18, 2010

The countdown begins...

The apartment is packed and we are counting down the hours till our journey back to Kansas begins. Avery has one last radiation treatment tomorrow morning followed by her goodbye party at the Proton Center. We'd like to leave before 1 pm so we can make it to Mobile, AL at a decent time. And yes, we made reservations this time!

Avery is doing really well and we are anxious to get her to St Jude for her scans and follow up tests. Although it makes us nervous, we know it will be followed with relief once we have the "scans are clean" verdict. (atleast until October when we do it again, and every 3 months after that) We managed to get follow up appointments with everyone - including the dentist, optometrist, and hearing dr. We will have 3 very long, jam-packed days at St Jude, but it will be well worth it if we are able to leave on Friday night.

Jeremy and I are so very thankful to everyone that has helped us in the last 7 months. Our employers have been imensley patient, flexible and supportive. Our friends have truly kept us going with their calls, and texts, emails and prayers, as well as their never ending willingness to mow our lawn, take care of the dog, clean my house, and take us to the airport. And of course our families, who have from afar worked so hard to make sure we had nothing to worry about other than Avery. To everyone - the three of us are so extremely blessed to have you in our lives. I'm not sure we'll ever be able to express our gratitude to all of you, although we'll probably spend alot of time trying! While we still have a long way to go on this road, it has been a lot easier to manage with the support of all of you. Someday when Avery is older and we get to tell her about all the people that love her so much - she will be amazed, much as we have been every day since Wednesday, December 30th, 2009. This will be even more confirmed for her by the gifts and cards that are piled in her room, all expressing their support for her.

On a high baby girl turns 18 months on Wednesday!

Jenn & Jeremy

Thursday, July 15, 2010

2 More Sessions Left!

Avery only has two more radiation treatments to go. She has done great with each session and the Doctors are very happy with how she is doing. Today is her last day of therapies in Jacksonville and she has made some big strides in all areas. The therapist have been really great with her and we are grateful for their help. We are going to look at her counts again tomorrow to see if they have gone back up. She needs them to stay up because she is going to start oral chemotherapy next week.
Jenn gets back here Friday night and that will be the last time either of us has to be away from here on out. It has been a long 7 months but we got it done. It has been nice being with Avery these last two weeks and I can't wait to get her home. I am amazed at how much Avery loves her life. She truly is the happiest little girl. Remember her party is on July 31 so we hope to see everyone there.

Saturday, July 10, 2010

Week at Home

I made it back to hot and humid Florida just in time! It is miserably hot here and I am reminded of why we live in Kansas City instead of Florida! Avery's counts are still at 700 so Daddy's birthday dinner was a little "to go" action. Needless to say we are hanging out low here in the apartment today as it is terrible outside. We had hoped to visit with the Parkers this weekend, but with her counts being low we decided that wasn't such a great idea. So instead we opted for saying goodbye to the purple Tinkerbell Chair as we shipped it home. Not sure what she is going to do without that thing for the next 2 weeks - man she loves it.

Avery's head is starting to turn a little red from the radiation so we've been given a cream to put on 3 times a day. She reaches back from time to time and I think it itches her, but she doesn't complain. She is doing well in therapies and they discovered we need to focus more on her upper body strength, or lack there of. She is still trying really hard and was not happy when the therapist started pushing down on her shoulders for resistance. She turned around and swatted her away, all while yelling at her -- Jeremy says it was hysterical.

I did fine while at home. The worst day was on Monday while I was home alone. Jeremy definitely had the raw end of the deal these last 6 months. It was good to be back at work, even though I don't feel like I accomplished a whole lot. It was helpful to have distractions after work -- so thanks to Nikki, Dan & Jacinda, Michelle and Monica for helping in that area. I did a phone interview with a Health Magazine this week and one of the questions she asked is how we dealt with things once it hit us. You know, I am not sure it has hit us. From day one we haven't had a whole lot of time to sit down and think about the situation in which we find ourselves. There has always been appointments, tests, scans, labs, therapies, Dr's visits, friends visits, laundry, feedings, updates, calls, a baby to take care of and everything else to do. There hasn't been a whole lot of time to sit back and think -- "oh my god this sucks - how are we ever going to get through this?" But I bet we will have that opportunity when we finally get home, course at that point it will seem kinda silly, considering the timing.

The weekend will go by all too fast I know but my light at the end of the tunnel is that this is the last goodbye we will have to say to each other for a long time. She has radiation this week and then on Monday of next week -- after that we drive back to St Jude and finish the week there. The hope is to drive back to Kansas City on Saturday, July 24th. Avery will start her oral chemo while we are in Memphis so cross your fingers there aren't any hiccups in that process.

Jeremy swears he will update the blog once this coming week, but he doesn't appear to enjoy it as much I do, so don't hold your breath. I will attempt to fill in the gaps later on. We need the prayers for her counts to come up as being under 1000 really puts her at a higher risk for getting off course. We are so excited to see everyone at the party....if I've missed anyone, please let me know.

Avery Welcome Home Party
Open House - Christiansen Home
July 31st
2pm - ?


Wednesday, July 7, 2010

21 Lbs!

Well for a change I (Dad) didn’t have to leave to go back to KC. As I write this I’m reminded that Avery was not the only one I missed when I was away. Jenn has done an amazing job and I can only hope to do half the job she has.
Avery’s ANC counts have dropped from 1200 to 720. If they go below 500 she will have to put the mask back on to help keep the germs away. The Doctor said that the combo of the chemo and radiation can do this. We will look at them again Friday so we know what we can and can’t do this weekend. On a good note she is up to 21 lbs. One more pound and she will be at a normal weight for little girl her age. She has been doing great in her walker and the therapists have really been pushing her to improve at a variety of tasks.
I want to thank everyone for all the support they have given Avery, Jenn, and I. It has been important to have family and friends surround us in our time of need. We have learned that the little things that happen to us in life are just that, little things…. Keep the prayers coming Avery’s way.

Sunday, July 4, 2010

My new bling bling walker!


Friday, July 2, 2010

The Walker Has Arrived!

The walker has finally arrived....albeit a day later than I expected. It arrived in full glory, shiny and ridiculously ostentatious. It is gold. You just wait till I post a picture and you will laugh as hard as we did.

For those of you on facebook this will be a repeat, but for everyone else -- well this is me so no surprises here. The PT therapist graciously offered to help me put it together and so we sat down to do so. The moment she took the walker out of the box I began to panic -- it looked way too big. As "psycho mommy" began to emerge, Lisa (the pt therapist) put me in my place by telling me to sit in a chair, open the other box and think about margaritas while she figured it out. Hmmm....guess I deserved that one.

We attempted to catch Avery in her new walker, as she really seems to like it, but when we tried she wasn't interested. We'll see what we can catch tomorrow so you can see what we mean about the bling bling walker.

Avery finally started to slow down a bit this week. The first 3 weeks of radiation didn't seem to phase her, but this week is an entirely different ball game. She has been a little more fussy, especially in the evenings this week. This hasn't taken the spunk or determination out of her hard work, especially in her PT sessions. She is the most determined little girl and fights very hard to do the things she wants to do. The motivation factor is key to gaining back strength and we are so glad she has it. She also has developed a bit of a skin rash on her head where the radiation is being administered. Her hair fell out in this spot as well and is not likely to return....ever. The treatment at this point is Aquaphor 2-3 times a day and will change to something a little stronger if needed. She doesn't seem to be bothered by it which is good.

Jeremy arrives tomorrow and takes over for the next 2 weeks. We miss him terribly right now and can't wait for him to get here. The downside to his arrival is of course my departure on Monday morning. But it has to be done and it will give Jeremy a chance to be with her 24/7 for a bit. It seems weird to be coming to the end of this part of the journey already as it seemed to take so long in Memphis. We are really looking forward to being home and having familiarity on our sides for a bit. We are hesitant to be so far away from our dr's at St Jude, but keep reminding ourselves that Memphis is only 8 hrs away. We are not looking forward to the Oral Chemo treatment as we are once again in the unknown. Our hopes are that the chemo will have a minimal effect on her and she will continue to grow and develop as a normal 18 month old should. She does her best when she has other kids around and we are optimistic that she will feel well enough to play with other kids often. The plan is for our friend Sharon to watch Avery during the week. We are so grateful to have someone we trust so fully, willing to take on the responsibility of her care when we are at work. On top of everyday kiddo activities, Avery may also have all 3 therapies and lab appointments. It is such a relief to not have to worry about trying to schedule all of that around our work. This will allow Avery to continue on with her progress and us to keep our jobs! So for those of you who know Sharon Norris....she is one of our little angels and we are so thankful she is in our lives.

Well, off to bed we go -- 2 days of getting up early have worn me out! We are hoping tomorrow might warm up so we can take Nana to the beach -- but it isn't looking good. Stupid Hurricane. It has been overcast and rainy all week here, along with milder temps in the low 80's -- I dare say Floridians would consider it cold! We'll see if the sun comes out for us tomorrow...