December Update

Well as many of you have already figured out -- I failed to update after our trip 3 weeks ago.  It amazes me how quickly Halloween turns into Thanksgiving turns into Christmas...yet here we are again.  Avery's scans went well. They were stable again, but this time we were met with much more optimism from our Dr than we had seen in the past few visits.  They found out that the spot that caused us some concern in August, was actually able to be seen on the scan from the spring.  This means the spot has been there - and not gown for almost a year.  That tends to lead us  more in the direction of radiation schmutz as our Neuro Oncologist called it.  What does that mean?  Well more the watch and see approach, BUT - he was comfortable pushing us to the 4 month visit mark.  That's HUGE for a cancer family. To see your visits stretch out over longer amounts of time is a great sign!  Super anxiety ridden 4 months of time for mom and dad, but at least they are comfortable waiting that extra 4 weeks.  This was probably the best visit we have had since our first 8 months of treatment and proton radiation. 

The St Jude Walk was ABSOLUTELY FREEZING.  But for those brave souls that came out to walk with us - it really means the world.  Avery is not currently in treatment, but each day is a battle for her. The effects she has to deal with as a result of this evil monster and its awful treatments will always be present in our lives.  Every day we see what it has affected and we find ways to work around it.  Her battle is not done - nor will it ever be.  This is something that she will soldier on with for the rest of her life, may that be another 75 years.  St Jude has given us the weapons and tools to battle and  move forward.  For that we are forever grateful.  I think KC raised just shy of 100K in its 2nd year.  I suspect they would have pushed above that had Mother Nature not decided to freeze us out.  I think the goal is 10 laps -- we made it around twice.  I found both my kids in the women's bathroom at various points so not sure they actually made it around the ball park.  Gotta do what you gotta do right?

When we go back at the end of March, we will start testing for Growth Hormone Defficiency.  Avery is not growing like we need her to and we are going to run some tests to see if her GH is doing what it needs to do. If not, we will be looking at putting her on a daily shot of GH to get her moving.   Yes I said DAILY SHOT.  My mornings will get that much more fun and I can't wait.  Right now her body is the size of an average 2 and 1/2 year old.  Something that is becoming more obvious as her friends continue to grow.  We did however get a new walker.  Not sure I am ready to give up the bling bling gold one yet, but the new one is really slick.  It's green and she seems to be pretty good at manuevering it.  If the test show she is in need of the GH then Jeremy and I need to make some decisions.  Thank you to you all for the continued thoughts, prayers and support this year.  Things have finally settled into a normal for us and we are navigating as best we can with these 2 small kids and all of their craziness!

Jenn

St Jude Walk

Only a week left to sign up for the Give Thanks Walk for St Jude.  I am very excited to see everyone with their Team Avery gear -- she will absolutely love it.  She recognizes her logo and well let's be honest, she thinks anything with a skull and crossbones belongs to her.  The walk starts at 9:30 or so but registration opens at 8:00 am.  Same place as last year - T-Bones stadium at Legends.  Plenty of parking in the lot.  I've been told by the event coordinator that they have added a lot more kid stuff this year to keep them entertained - wait walking in a circle around the ball field isn't fun????  They are expecting even more people this year and last year was a great turnout.  So if you aren't busy Saturday am and want to join us we'd love to see you!  It costs nothing to join the team and walk - although the very cool St Jude T shirt is yours for a $35 donation!  There is a link to our team on the right hand side of the blog on the main page under Team Avery Page.

For those of you in other cities...I bet you didn't know it but they have walks at the same time in over 90 cities on Saturday November 23rd.  Yep  - you people up there in the Frozen Tundra (MPLS) are more than welcome to throw on your gear and show your support for Avery at the Target Field - Gate 29.  Walk starts at 8 am - registration is at 7 am.  And for all the ATO's and AXO's in Des Moines,  Tony Steffes plans to represent Team Avery - you can join him at Valley West Mall by the JCPenney enterance at 8 am - 7 am registration starts.  Sorry Omaha --- no walk yet in your city, but I bet it will happen soon!  If you do happen to venture out, please send us a pic.  I would love to show her all of the other Team Avery's helping out her favorite place!

On another note, we are getting prepped for our next Memphis trip.  We leave the Sunday after Thanksgiving.  Again the 3 months have flown by and I can't really recall what we have been doing.  Absorbing "normal" life I suppose.  I have to admit I feel ok about this one.  All of the scans this year have been what we are calling stable.  (debate about that term for sure - but no obvious sign of tumor growth is stable for me)  The last time I felt this way was the October after her 2 month stint in Florida for Proton Radiation.  Luckily Jeremy and I decided to both go to Memphis at the last minute and thank God we did.  It was the first time she relapsed.  We were devastated.  I can honestly say that we felt like we had been sucker punched.  Like all the work, the endless hours of chemo, brain surgeries, poking and puking, sedation and the runs had all been for nothing.  Luckily we have a Dr that looked at us and said "put your gloves back on."  We've come a very long way since then.  More surgeries, more bad news,  more living out of a suitcase, more chemo, more puking... and then...just a little reprieve after 2 and half years.  She then hit 4 years old.  Welcome to the terrible 3's ( in our case 4 because she's a little delayed).  The spunk, the determination, the fire that has kept her going since she was just 11 months old has finally got no where to go.  Her poor brother.  I swear Emmett has been tackled more times in the last 3 months since he started walking.  And the sassiness is in full swing too.  Have you ever had your kid look at you and repeat back the words you have used on them before?  "I'm not asking you, I'm telling you" came out of her mouth the other day while arguing with her over putting on her coat.  How can you not laugh at that?   I'm pretty sure she spends a fair amount of time in Time Out at therapy for being a turd as well.  Ornery and bossy and I have no idea where she gets it from.  Bottom line is to keep the prayers coming.  I will most likely start to panic in the upcoming week.  Almost like a "its too quiet" scenario that always results in a not so good way. 

Lastly, I'll do a little plug about the Thanks and Giving campaign.  St Jude partners with a lot of retailers and restaurant chains across the country during the year.  From Thanksgiving through the holidays they roll out a cash register campaign that asks you to give while you are checking out.  There are a ton, and I mean a ton of companies that do this so if you are out shopping and eating and can afford to donate a $1 or 2, please do.  That money is what keeps them researching ways to kill this beast.  It's what allowed us to live in Memphis for 6 months, to buy groceries, and to keep us entertained while there.  All of those things would not have been possible if the supporters of St Jude didn't exist.  Avery's medical bills are atrocious.  St Jude does more than just take care of our baby.  It allowed us to LIVE  - in whatever fashion we could in between all the aforementioned yucky crap I listed above.  So give thanks for the healthy kids in your life and give to those that are not.

Can't wait to see everyone on Saturday!

Jenn

Doc McStuffins

Fall is Here!

This is what cancer didn't take from us.

September is Childhood Cancer Awareness Month

Every day 46 children are diagnosed with cancer

Every day 7 of them die from it

It is the leading cause of death in children and yet people consider it rare...

The day before Avery was diagnosed, I wasn't a cancer parent either.

GOLD is color for Childhood Cancer Awareness 

MRI Results August 2013

I apologize for the delay in posts...been a crazy week like normal.  Avery ran the whole gamut of tests while in Memphis this week.  Hearing was stable,  teeth looked fine and vision was holding steady.  We'll continue to patch her eye to force the right one to focus more, but overall it has improved greatly this year in terms of straightening out.  No major concerns with her therapies.  Her speech therapist placed her in average to slightly below, but really I think the tests are outdated and environment plays to key a role in success.  I mean if someone showed you a picture of a calculator...  You'd probably call it a cell phone too.  And what 4 year old reads a newspaper?  Lord knows her parents don't.  It's called an IPad.  

We met with the urologist on Wednesday and he wants us to continue with the bladder spasm medicine.  The sucky part is that it constipates her so stinking bad!  We giver her daily Miralax doses but she still ends up backed up.  It's so sad to hear your 4 year old ask for an enema.  Then of course being constipated can cause UTI's,  which we haven't been able to shake for the last 2 months.  Forget potty training at this point.  She finally has a little more control over her bladder when on the spasm med, but then the constipation fueled with Miralax causes blowouts and accidents all over the place.  It's a roller coaster and it sucks.  

Her Lumbar Puncture came back clear.  No cancer cells present in her spinal fluid.  Her MRI came back about the same as before.  No new areas of concern but the spot from February could possibly be brighter and larger than before.  Does it represent tumor growth?  Who knows.  Given the location, the original tumor bed,  we tend to lead towards radiation damage.  It's the one spot that has had radiation twice.  But we will never know for sure...if it doubles in size at some point we will start to get worried.  For now,  we'll claim stable until we are told otherwise.  

Here's to another 3 months of pretend normal!

Avery has returned to rehab again this week.  She was so excited to see her therapists on Friday.  You'd have thought she was at Disney World!  We are currently looking for options for helping us get Avery to and from Rehab on Wednesday and Fridays.  She goes from 9-4 each day and for the last year Jeremy and I have missed a lot of work taking her and picking her up.  If you know of anyone looking for a little side job, please send them our way!  There is unfortunately no programs for pediatrics like this in our area so we have to take her downtown,  a short drive from our house but we both work 20 mins south of our house so the drive back takes much longer.  If you know of anyone that would like to spend time with my bossy....er...strong willed 4 year old, please have them email me at Avery.christiansen@gmail.com.

A big thanks to Nana for coming to KC for the week to hang out with Chubbs.  He would have been miserable locked in a stroller all week at St Jude.  Nana time was way more fun!!

September is Childhood Cancer Awareness Month.  Gold is the color - so you'll definitely see that soon.  Please wait to share the pink until October -  kids need your support too.  And I just ordered some stickers and ribbon car magnets, let me know if you'd like one!!

Jenn

So far so good...

Teeth looked good, although they need a cleaning.  Hearing looked the same.  No decrease in ability.  Speech measured just a touch below average on 2 areas and average on the other.  Need to work on plurals, course when you can't hear the S on the end of the words that can make plurals a little hard to catch onto.  

Next up is vision.  Expecting stable there as well since her eyes looked great in June and patching seemed to be helping her wandering right eye.   Tomorrow she has her MRI and LP in the am.  Results will most likely be Wednesday.  

Today was a good day for us.  

Countdown to St Jude

It's hard to believe but our next trip to St Jude is coming up again.  Nana is coming down to stay with Emmett since 11 months old is not the age to lock a kid into a stroller for 3 days.  Hard to believe that Avery was this age when this whole nightmare of a journey began 3.5 years ago.   My how fast his first year has flown by compared to hers.  I remember sitting in agony waiting for her to hit her next milestone...with Emmett we turn around and think holy crap!  He's doing that already???

What a different path we are on now.  

Jenn

Corn on the cob for our toothless wonder...

We made the long haul up to MN on Wednesday night so we could spend the weekend at the cabin.  It was great to see the Johnson side of the family and of course spend some quality time with nana, GJ, Uncle Rob and Miss Cory!

The kids loved the lake and all the fun activities Nana planned out.  We watched a movie under the stars,  sat down by the dock, rode on the tractor, played with fishes, watched the puppies swim and ate like pigs.  Avery loved her corn on the cob,  but since she has no front teeth she mainly enjoyed the butter and salt.  Whatever works right? We spent the day with all the Johnson clan yesterday, even though it rained all day and had a great time.  Avery was very sad to leave. 

The trip back to KC is a long one for sure.  We just made it to Des Moines and she is begging to go to Nana's house now. The last 3 hrs are going to be the most fun I think...

Loving the summer fun...the normalcy.

Jenn

First Fish with my Daddy

Gallery

Hit up the first "first Friday" of the season!  And my picture had 5 bids on it already!  I'm pretty proud of myself for sure.  I made a picture to sell in the show for the Giving Solo organization that raises funds for kids with major brain injuries to have a n Art program at the Rehab center of KC.  I loved it!

My First Gallery Showing...

I call it Blue

Stable

Totally gone would have been awesome...but no new areas to watch was a welcome relief today.  Avery's platelets went down to 64 by this am so we will recheck in the morning and possibly top her off before leaving tomorrow afternoon.  We will recheck again on Friday at home and most likely again next week if need be.  They are thinking virus for now but the chance of a secondary cancer is always out there...leukemia wouldn't be that far of a stretch at this point in the game.  Yeah I just said that.  Welcome to our world.  Crossing our fingers that her body is just rebuilding from a virus and that we will see some progress in the next few days.  

We are fairly content with stable, although I hate reading the MRI reports that repeat the words "possible leptomenigeal disease" in more than one area.  But we are crossing fingers, sending prayers and feigning lack of interest for the next 3 months until something changes.

My mommy radar was on high alert these last few weeks because Avery has been an absolute defiant little turd.  In my head a kid can not possibly be that big of a brat and not have intercranial pressure...turns out you can.  So on the plus side-no new tumors.  On the negative side- I may need that British nanny to come spend a week with us.  Who new 4 year olds could be so strong willed??  

Thank you for all your amazing prayers...

Jenn

Unexpected Transfusion

Today was a long one...especially because 2 kids decided to get up at 2:00 am.  Not sure why that happened but boy it was fun.   We hit up the local children's hospital down here to get a few diagnostic tests done and we arrived go find out they told us the wrong time.  Great start to the day.  After a 4 man battle to cath a very strong willed 4 year old we moved over to St Jude to get blood draws.  Halfway through the day we got a call from our NP who informed us the Avery's platelets were at 13.  Uh. Major issue.  We redrew and got the same results so this evening we spent 3 hrs in the Med Room getting platelets.  Not exactly the day we had expected.  

On a good note,  Avery's eyes looked good and no new prescription was needed.  The Dr indicated we will most likely do surgery at some point but for now we are good.  Her bone density scan revealed that her body thinks she is about 2 1/2,  which is great because she is the size of a 2 1/2 year old.  In terms of age,  she comes in at the 3% mark.  But if you put her on the 2 1/2 year old scale she shows up at 50%.  That means that her body is on par with growth for the age it thinks it is.  If her bone density put her at 4 we may be a little more concerned with her lack of growth.  I'm pretty sure Chubbs will out weigh her in 3 months.  

Tomorrow we have early labs again before her MRI. Not sure if we will get results tomorrow afternoon or not.  We have appts on Wednesday as well and then we drive back to KC.  Thursday we managed to  get an appt to cath her again in KC so we can hopefully get some answers from our new Urologist.  

Keep the prayers coming...

Jenn

St Jude Trip Today

Well 3 months has come and gone more quickly than it ever has for us.  We are on our way to St Jude now and hoping to make it there by 9 pm tonight.  I of course forgot to make reservations at the Grizzly House so we may end up at the hotel instead...hopefully not as that makes the day more complicated.  So far so good on the drive.  Avery is content with her movie and some chocolate covered pretzels.  Emmett is contemplating another nap and has so far been pretty quiet.  

We have appointments tomorrow morning at Le Bonheur to get some diagnostics done on her inner plumbing.  Hoping to find out something about her issues with UTI's and constipation.  Her MRI is slated for Tuesday.  She will meet up with all the other drs in the next 3 days as well to make sure things are looking good.  

A big thanks to those that joined us yesterday for the KC Cancer Crawl.  We had. Great time while raising funds for a bunch of fabulous charities all working towards finding a cure.  Team Avery rocked!  

Kick those prayers into high hear....no new "spots" and shrinkage in all other areas which would mean radiation damage rather than tumors.  Someday they will have machines sophisticated enough to differentiate between tumor and damage...never mind- when they have that they will have a cure too.  

Jenn

Mother's Day 2013

Hard to believe it's May already...especially with the crazy roller coaster weather we have been having! This weekend we spent with all the grandparents and it was fabulous, albeit too short. Nana and GJ, Grandpa Randall and even Great Grandpa Johnson came to see us. It was a special day for Emmett as he was baptized yesterday and we are very proud!

Happy Mother's Day to all you amazing moms out there! Being a mom is pretty much the hardest job ever. It's the most demanding thing I've ever done, and I live in a constant fear of doing it wrong. Now granted we have some extra special circumstances that may add to that pressure, but let me tell you this; holy crap! Nothing can prepare you for the everyday experiences that get put in your path. I mean how do you decide what's too much sugar? Or acceptable behavior? Or how to stop your 4 year old from screaming "yes!" at you when you ask her if she wants to go to time out? I mean honestly...Who knows the right answers to all of these? So based on the fact that no one hands you a "How to not screw up your kid" manual as they wheel you off the maternity ward...I pretty much think I rock as a mom. Just saying. I'm very proud of all three of my kids... even if I have to pay for therapy for them later. I probably owe a lot of credit to my own mother for moulding me into the patient, quiet, demure mother that I am today - ok so maybe that's not exactly what I am. But credit for me is due to her - so thanks Mom! You did a pretty solid job I think!

So far has been a fabulous day. Breakfast with the family, Starbucks iced chai tea, an E for my necklace, and a new craft table (courtesy of GJ) for my sewing projects!! Now off to the nursery to find my moss roses and probably a nap!

Blessed to the nth degree...

Jenn

Where is Spring?

It's April and it's 45. I'm about done...anyone else?

We have been doing good the last few weeks. Avery has been working really hard on standing alone and learning her letters, as well as potty training. She is doing really well with all 3, although I think there is some issues with the last one. We are hoping our June trip to St Jude will shed some light for us on this. We find there tends to be a lack of full control or maybe it's brain signals, at times for her. Her new Urologist in Memphis will hopefully be able to tell us more after we do some tests.

Emmett has started crawling as of yesterday and we can tell he is going to be a menace already. He is into it all already and only going to get worse. Avery never got into anything so we never really had to fully baby-proof the house. Course we spent a majority of that stage in Memphis so maybe that is why. He has a full head of blonde hair now and it is coming in Zeglin thick. Thank goodness they get my hair. Avery's hair is ridiculously dark with a hint of red in it and she also has my hair. Radiation shuts down hair growth and a lot of kids don't ever grow hair where they have had radiation. Lucky for us, Avery is only sparse in the spot where she has had the radiation twice. Once her top hair gets long enough you will never even notice!

The St Jude Dreamhome raffle is starting soon. I will post more later on it. We did the Cure Search Walk the other weekend up at Legends. And the Cancer Crawl is open for registration. We are signed up and ready to drink some beers to raise awareness and funds for more research...and let's face it, Jeremy and I could use a little adult fun. If interested, check out the website at http://www.crawlforcancer.org/kansascity. We'll get more info about all of them up later as well as some new pictures of sassy pants and her sidekick chubbs!

Jenn

Itty Bitty Rockstar & St Jude FaceBook Page

For all you Facebookers out there...I noticed today on my feed that St Jude Research Hospital page was looking to choose the cover picture to put on their Facebook page.  Much to my astonishment, there was my bald and beautiful daughter as one of the 3 options!!  If you get on my page I attempted to reshare the link/post.  You need to actually click on the picture of Avery (yellow picture in the middle) and hit like on her picture to count towards the voting procedure.  You can also look at the St Jude Research Hospital Facebook page at St Jude Facebook Cover Contest.  You have to open her picture and then hit like.  Very fun!  Obviously all 3 girls shown are adorable and the last one has a teddy bear, which melts your heart even more....its hard to pick I know.  I of course picked the baldy with purple glasses in the middle, giggling because she just spent 30 mins throwing pennies into the Danny Thomas fountain after a long day of Radiation treatment, sedation and therapies. I am, however, biased.

On another note...thought I would share another fabulous website with you all.  Avery is very connected to her blankets and has been since this ordeal began.  It was a  blanket that spurred on the theme for Team Avery (skull & crossbones) and has continued to symbolize this battle and the strength it requires for her and for us as a family.  That being said, my friend Angie has made it her mission for the last 3 years to make sure Avery has as many of these blankets as possible.  She even learned to sew for her!!  Avery has more skull and crossbones blankets than we can count!  Each one is different, beautiful and amazingly soft.  As a result of all her hard work, she discovered she loved making them....and along came etsy.  So if you are looking for a fabulous gift for a kiddo....maybe one going through something tough like Avery, check out her site.  She can personalize one for your fighter, your snuggle bug, your hero.  Itty Bitty Rockstar

Jenn

Don't forget to vote! 

4 years old and 6 months old

MRI and LP Results

Sorry for the delay in posting...the weather proved much more eventful this week then we had anticipated and it kept both Jeremy and I busy.  Kansas City is such a mess when it snows!  This MN girl is not used to the fact that plows aren't out 24/7 and it was a complete shock to me that our street wasn't plowed until Friday evening. 

Avery's visit to St Jude was good.  We met with all the usual Dr's and therapists.  Her Eyes haven't changed and have actually done well with the patching.  This is great for us becuase the last visit resulted in us putting surgery on the table to correct the right eye from drifting.  While its not "off the table" it certainly isn't heading down that path which is a relief.  Speech was impressed with her progress and vocaublary and we have decided the turd knows way more than she lets on.  She is smaller than a typical 4 year old, sitting at the 3% mark for height and 9% mark for weight.  We are hoping her Growth Hormone kicks in but if not, we will start looking at options for helping her body grow. 

Counts were great -- everything is finally in the NORMAL range -- something we haven't seen for over 3 years.  Amazing how something so simple can be so significant to us.  Her ANC was 3300!  We had her MRI late Monday morning and they had a hard time getting the LP so we had to sedate her again on Tuesday and get the LP done again.  Tuesday afternoon we met with Dr Armstrong to discuss the results of the MRI.  They were a little confusing and we are not sure of how we feel exactly about them.  The Dr wanted to show us the scans prior to us reading the radiologist report because he and the Radiation Oncologist disagree with the report on the conclusion.  There are still the same spots present as before -- all the same in size, so stable.  There is one spot, located in the original tumor bed that appears on the Spine MRI to be larger than the last scan in November.  When you look at this same spot on the MRI of the brain, the spot appears to be the same size.  What does that mean?  Well, as a radiologist would report, and did, it appears as if she has tumor progression in that area.  However, given Avery's history, the Dr's aren't 100% convinced.  Avery recieved proton beam radiation to this spot 6 months into treatment.  She also then received it again last year when we did the full Spinal - Cranial Radiation.  Overall, this particular area has had over 90 grey of radiation -- the max.  It stands to reason that of all the places for recurrence, this is possibly the least likely.  HOWEVER, cancer is an ugly and unconforming type of beast and by no means is this out of the question, a possibilty.   The extra good news is that the LP came back as we were discussing this with our Neuro Oncologist and it was negative -- VERY VERY GOOD.  A positive result would help confirm what the MRI is showing the Radiologist.

On Wednesday we went and met with an offsite referral Urologist in Memphis.  The first thing he said to us was that over the years he has figured out that St Jude kids are a breed all their own.  That was music to my ears.  We've had some trouble with the local Urologist treating Avery like a typical kid.  Seems to be hard to impress upon him that the butt load of chemo and radiation my kid has had can have a significant impact on every function in her body --- including her pee pee.  When we return in May he has ordered us to repeat the reflux diagnostic test and also a new test to look at what the radiation to her spine could have done to her bladder area.  We are very excited to be working with him.

Bottom line is we have been granted another 3 months of "pretend normal" because TIME is the only thing that will tell us what is really going on.  And for now, that's what we'll take.  Living life 3 months at a time is not something I would recommend to anyone, but given the alternative, we slap a smile on our faces, give thanks to God for what we have and savor each hug, each kiss, each giggle,  and yes, even each temper tantrum. 

My 5 1/2 month old weighs in at 19 lbs.  When avery was 14 months old we were struggling to keep her above 17 lbs.  I'm not sure what to do with this chubby, happy, drooly boy -- what a difference!

Thank you for all the prayers! 

Jenn

St Jude 1 year post Radiation Scans

It's been almost a year since Avery completed radiation.  Tomorrow we leave for our one year post radiation MRI.  To say we are scared is a gross underestimation of how we actually feel.  For 3 months we have been fully aware that absolutely no treatment has been going on inside her body waging war against this monster.  This week we'll see if what we chose last winter was right.

We'll post as soon as we have results...check FB for quicker updates.  Prayer Warriors we need a lot of overtime right now...the children's cancer battlefront has seen a lot of Angels these last few months.

Jenn

Still running a fever...

Avery seems to be having trouble kicking this fever.  Sundays trip to the ER resulted in a negative UTI culture and flu test.  They decided it was something viral and to let it run its course.  So Monday we kept her home and she seemed ok all day.  Tuesday we took her to school and they called us around 2 and said she was running a temp.  Wednesday we stayed home again and she seemed ok all day.  Last night however, she spiked a temp again and she stayed home with Daddy today.  She spiked again this evening and then Emmett jumped into the mix and started running a temp as well. What a strange cycle.  Other than fever, they appear to just have a bad cold.  Runny nose, congestion and a cough.  Into the pediatrician we go again tomorrow to see what she thinks.  We are definitely ready for spring!

ER again....

Well....the port is out but we decided to take her anyway.  I swear this kid saves all her issues for 9 pm at night.  We are once again at CMH ER waiting for the Dr to come in and check us out.  She started running a fever earlier today and it spiked rather quickly tonight.  The shakes started and her stomach hurt and after a couple of calls with the CMH nurse on call we decided we weren't comfortable not going in.  So much for normal.

The last time she was like this we ended up septic and in the PICU.  Needless to say we weren't taking any chances.  So here we sit on a Sunday night...it's 11pm and I just schooled the ER Dr who just fell out of med school and normally works with adults.  Freaking fantastic.  Just what I need.  Oh wait he just sent the Attending in...and he suggested all the things I did.   Hmmmm....I so don't get paid enough to do their jobs for them....


Jenn

The Big 4

It's crazy but true -- this warrior of ours is 4 years old now!  She hit the big 4 last Monday and had a party the Saturday prior.  She was adamant about having a Pinkalicious Party this year, much to our surprise.  The funny part is that a majority of her friends are boys...So we improvised and asked the boys to wear green and girls to wear pink.  We loaded them up on cupcakes and candy and sent them home!  Mission accomplished. 

Avery had a blast and was very excited to be turning 4.  This is a huge milestone for us.  Last year at this time we were stretching to make it to the 3rd birthday and desperate to start radiation.  What a difference a year makes.  I'd love to say that things are awesome and Avery is doing wonderful, but in reality we are still living 3 months at a time.  So we'll stick with things are good. 

Avery continues to work on her skills, her walking, her talking, her potty training.  We seem to have regressed in that last area.  Not sure why - maybe something to do with Emmett or maybe there is more to the radiation damage than what we have realize.  Whatever it is, we are really hoping to see some progress moving forward.  Her walking is about the same.  No change in her abilities there.  Her talking is getting much better and her vocabulary is growing every day.  She has picked up singing songs, which tickles us to no end and her conversation skills are improving greatly.  We have also moved into the "toots, poo and naked are so funny" stage that all kids go through.  Gotta love a naked toddler crawling her bare bottom away from you as fast as she can, giggling all the way. 

Jenn