Team Avery St Jude Walk

Scanxiety is back as we prepare for our next set of scans next week.  We leave on Sunday for 2 days in Memphis...hopefully 2 rather quick and painless days.  Avery will have an MRI and LP as well as her other check ups.  She has been feeling well the last few days so we are hoping for a quiet week.  Course thats not counting the pumpkin carving and trick or treating in the next 2 days.

I will post photos on Wednesday but Avery is very excited about the Candy she's been told she will receive while trick or treating.  We've been working on the "trick or treat" but so far all I can get her to say is "TREAT".  Her and Emmett are going as Minnie and Mickey Mouse and I am very excited to see them in their costumes. 

It's getting closer to the St Jude walk and we are excited to see Team Avery pull together again.  If you are interested in joining us on the 17th please register on the website to the right.  Its free to register and walk, but of course the point is to raise funds for St Jude so if you can spare $5 that would be fabulous too! 

Date: November 17th, 2012
Registration: 8am
Walk: 9:30am
Location:  T Bones Club out at Legends

As soon as we get scan results I will post.  Praying for no spots, no cells and no growth...

Jenn

Pumpkin Patch

I apologize for the lapse in posts...although from what I hear many of you are not getting notices of my new posts anyway.  I have scoured the web page settings and asked the forum about this - but no one seems to know why that would be happening.  My only thought is that google adjusted something in their GMail accounts and those of you not getting the notifications probably have some setting set that needs to be un set.  Or something more technical than that - but you get the gist.  So if you are one of those people, I would take a peek at your google settings and gmail settings to make sure notifications are being allowed. 

Its been a busy last 2 weeks for the Christiansens as we have attempted to adjust to the new schedule and the new addition.  Avery's weekly schedule includes 2 days a week at preschool and 2 days a week at Rehab and one day a week with Mommy.  I think we've all been seen by at least 3 dr's in the last few weeks as well.  We did meet with the Urologist - not impressed with the current plan, but apparently don't have an option.  Avery is extremely backed up from the meds he has her on, and that causes UTI's.  However, she has bladder spasms as a result of her radiation and needs those meds.  So in essence we've been told to regulate her diet and get her constipation under control.  Yeah right.  Who regulates a 3 yr old's diet?  She eats exactly 4 things.  Mac & Cheese, Cereal, Peanut Butter & Jelly, and Chicken Nuggets.  Oh wait -- and anything sweet.  My kid is not going to eat black beans and fiber one...Oh and still manage to maintain or gain weight since her skinny little butt is barely holding on to 27 lbs.  Needless to say we are annoyed.  So we've added Miralax daily to her regimine and as a result have had continued blow outs for a week.  Nothing better than 2 kids that blow out their diapers.  Someday we might actually get to potty train her. 

Today we took the kids....weird saying KIDS...to the pumpkin patch.  She of course had a blast and loved the animals and hanging with her buddies.  We also hit up the apple place for apple cider and fresh doughnuts...which of course she loved (cause we love anything sweet).  Fall has definitely arrived and abruptly!  But I'll take this over the 101 degree days for sure!  October is always a crap month for us...we just hope that we haven't jinxed things and made November a crap month instead.  Avery's next trip to Memphis is on November 5th.  We'll do another MRI/LP and check out all her other items....hearing, vision, therapies.  We are starting the prayers early this time as we are very nervous about this scan.  Please add her to your lists. 

Please also add another St Jude Warrior to your lists - Alivia is her name.  She was in radiation at the same time as Avery and she is 3 yrs old.  On her follow up visit with St Jude this month, they were given the devestating news that Alivia's battle is almost over.  She was diagnosed right after Christmas this past year with an inoperable brain tumor with no chance for survival.  Radiation was done to give her and her family as much time as possible and they have had 7 amazing months as a family.  But let me tell you this -- no amount of time is ever enough.  Being grateful for every day you get is so easy to say to someone who is under the impression they have all the time in the world.  To a mother who knows that time is limited -- its never enough.  My heart is breaking for this family as we watch them go down this path, knowing so well that we are so close to the same path.  As we get into some sort of "routine" I am constantly reminded that in an instant we can be slapped back into the reality that is ours and will continue to be no matter how "GOOD" Avery appears to be doing.  That constant fear is in the back of our minds every second of every minute of every day.  It only takes one crappy update on one kid, one tv show with a kid dying, or one mention of the kids of any one of the hospitals that we have utilized to send us back into that spot.  Heck the TATAS this month freak me out.  My daughter wants nothing more than to get those boobies to want to save.  I literally had to fight her for my nursing bra this morning and she had me in tears cause she wanted so desperately to put it on.  Reminders of what this nasty beast can do to not only a child, but the family that surrounds them.  Alivia is a fighter and has lived her 3 short years impacting a lot of people around her.  She is vibrant and will make the most amazing angel.  So please say a prayer for her and her family, for a quick and easy transition into her new role with God and for peace for her family as they accept God's plan.  No child should ever have to suffer the way Alivia and Avery have...

Jenn 

3 Weeks Old, 2nd Week of Preschool

Well it's been 3 weeks already since Baby Emmett arrived and I was worried he wasn't gaining the weight he needed so while at the Pediatrician for Avery's most recent Cath and UTI confirmation on Monday, I asked the nurse to weigh him.  Not to worry people...the chubby cheeks are being fulfilled -- he weighed in at 9 lbs 10 ozs.  ARE YOU KIDDING ME?!  We've obviously outgrown the newborn clothes and are filling out the 0-3 months quite nicely. 

In case you missed that mention above, Avery has yet another UTI.  Urology is in for a treat on Monday when we go for our 3 month appointment.  I called them after our UA was confirmed positive and let them know they had a week to start researching causes and a plan for Avery moving forward.  I don't want to spend our appt talking about the past, I want to move forward.  The last thing in the world this kid needs is to deal with a burning pee pee everyday.  They need to figure out why her reflux is causing repetitive UTI's and fix it but fast.  Psycho mommy has not been around for a while but she will be showing up Monday - guaranteed.

Avery went back to Preschool after yesterday's Dr appt and seems to be warming up to the kids in her class.  She tends to get overwhelmed in crowds...especially when the crowd is filled with friendly, curious 3 year olds!  I think her class is getting used to her walker, hearing aides and braces and she is losing the excitement that made her the center of attention.  Good thing for her as she takes after Dad in this area...

We are very excited for fall's arrival.  So much to do in Kansas City and no scans in October!  I am honestly so thrilled to not be going to St Jude in the month of October.  Even though we have to go back at the beginning of November, the thought of being there in October scares us to no end.  We have big plans for the next month that include football games, fall festivals, the pumpkin patch, and the apple orchard.  In mid November we will also be participating in the Give Thanks Walk out at Legends.  Team Avery is starting to rally up and will be walking on November 17th to show our love for St Jude.  Should you want to join us, look to the right and  click on the "Give Thanks" link.  It's free to register to walk with us, however should you have a few extra dollars to donate to the hospital please do.  St Jude has given us so much -- most importantly time as a family, and we will be forever indebted to them for allowing us whatever time we may get.  November will be here before we know it -- you all know how fast the fall goes...so please join us on November 17th. 

Thank you to everyone that ate at Chili's yesterday!  Chili's is a huge supporter of St Jude and has raised millions for the hospital.  Proceeds from yesterday all go to the hospital!



Jenn