Sunday, October 7, 2012
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...
Posted by Jeremy, Jenn and Avery at 10:16 PM