Wednesday, August 24, 2011

when do we go mommy?!

Charli had an appointment at BoysTown Research Hospital today to try and get a handle on what is going on with her tummy troubles.  We have had a few tests done in the past with no answers so today she had an endoscopy and another procedure which I can't spell :-)

Her pictures came back looking well, we got to see her many people can say that!  That is good news.  Dr also took four or five biopsies along the way of the scope to test for various bacteria, infection, and other issues which may be causing her pain.

Before we had these tests the doctor did prepare us to know that some discomfort and pain may be a result of the neuroblastoma.  However, we want to rule other things out before we just chalk it up to that.  Going there today, it sounds like Dr has another idea of what she may be facing.  Something called (are your ready for this Dr. Andrea Ripp) abdominal migraines.  I will explain more below!

Chad, Charli and I went down the night before because we didn't want to get up so early and ship Harper off extra early too.  This meant we got a little date with Charli!!  She had fun, although she was missing Harper in the beginning of the night!!

 Charli in her fancy PJ's! 

as someone on facebook can just look at this picture and know that God was there with us!!  Chad opened up the blinds and this was their view!  They were both super excited, and kept everyone nice and calm (well, they two of them anyway...I couldn't have cared less!!).  It also made for a great picture!!

 everyone at boystown was amazing.  Charli even got a special "gas mask" for her monkey so that they could fall asleep together when she was put out for the scope.  In addition they also let her pick a special stuffed animal when she woke up.  She picked an alligator, so she could have a daddy and baby match!  She came back to the room with her monkey and gas mask, alligator named crocky, and a new book!  Before we left she got to pick out a new pillowcase too!! 

What an amazing moment to capture...
Charli was SO brave.  They wanted to give her some medication to calm her down before taking her back so she didn't have any anxiety.  She had this one other time while when she had her port removed and the after effects were horrible.  We basically refused this and said we thought she would do "okay".  Turns out we way underestimated this.  She rolled out without an apprehension in her body.  The nurses said she talked their ears off before and after! 

When she woke up she looked around and noticed she was the oldest one in the recovery room.  She also noticed that "the room is sooo big if I knew how I could rollerskate in here!"  Then she added that she doesn't know how to rollerskate OR fish! 

She came back in good spirits.  This is her thumbs up, which you can't really tell because she still is hooked up to her IV's and monitors.  About five minutes later she asked "when are they going to take the pictures mom"...she didn't even realize she had left to have the procedures done!  She was so confused!  She has been put under several times, but this is the first she is able to communicate how she feels. 

She is so brave...

Now, on to how they are treating her.  Unless the biopsies come back to make him change his mind, it appears that he feels she has what is called an abdominal migraine. 

Abdominal migraines are a type of migraine headache.  They usually lead to typical migraines as children age.  Only about 2"% of kids get this...imagine that!  These type of migraines cause the pain to be in the belly (midline) and can later start to be a trigger for a migraine headache.  They can cause bad stomach pain, nausea, cramping, vomiting, etc....much of what we have seen with Charli. 

This can also cause other symptoms which we have also seen in Charli.  One theory regarding abdominal migraines is that it is caused by changes in two specific chemicals in their little bodies.  This is a natural occurrence in the body, and could also be a result of the cancer.  They feel stress and anxiety can cause the change in these chemicals.  (that right there will make you feel like a stellar parent, let me tell ya)

She will get a daily med to see if we can see an improvement.  If she has sporadic pain we have something we can give her which is like tylenol for a typical headache, but for her tummy.  If we do see an improvement, I am not sure if we keep on the meds or do something different.  If we don't see improvement we may have to consider that this is an issue which is a result of the cancer and we will have to "deal".  Either way, we will sit it out and wait. 

Thanks for the prayers, everyone!  Hopefully she will outgrow this and keep on keeping on without any trouble! 

Monday, August 22, 2011

big and busy days!!!

Perspective is an amazing thing...just amazing.  Waking up in the morning and deciding that you will have a great day, puts everything in motion.  Until. Until the dogs get into the trash, the big sisters leaves the little brother out, the little brother takes the big sisters toy, the water falls on the floor, the lunch is left in the fridge, the office is a mess, etc, etc!!  However...all of that fads away when we have a small reminder, just a glimmer of what a real problem is or what true joy looks like.

(the pictures are very out of order!!

 Charli was so proud of this mud when it was nice and fresh and fun!

There is a big puddle at the shop and Charli had the time of her life tearing around in it!!  She had mud on her legs, arms, and face!!

Charli's first day of preschool!!!  She was such a big girl - didn't look back when she walked us to the door!!

My eyes filled with a few tears when I remember holding a small little baby and thinking...will she get to do all the things she is supposed to do?  Perspective.

my two favorite Charli & Charlie's in the world!!  She loves her grandpa!  Hanging on the farm has been a blast on our last few visits, especially now that grandpa's garden is so exciting!

does it get any better than this?!  I am still not sure who loved this the most...grandpa, Charli, Harper, or Chad!! 

Charli washing her 4-wheeler the weekend before she went mudd'n!  She is a total product of her father!!  She even dried it when she was done!! 

how can one simple piece of machinery make three people sooooo happy?!

Chad said that he remembers having a picture of himself like this!!  At every turn I see how much trouble we are in with this one....

Lucky for us, he hasn't found the mud yet!!
two of my favorite boys!

It's me!!  Chad had ME knock a tree over and haul it down the highway back to the tree pile at the shop!  He was like a proud momma bird!  It doesn't take much to make those we love happy!

more fun in the mud!

Chad may have gone to clown college in a former life?!!

Perspective is a word which a good friend has brought into my life...and one which has been on my mind a lot lately!  Life can change in a second, we all know this -- why do we forget?  Why do we only appreciate the small miracles when we are faced with losing a big one?  We are all guilty of it.  We hear of a heartbreaking story, it makes us reevaluate our situation...we gain some perspective and we become more rounded.  For awhile.  Then, we let the little things build back up to the point where we lose sight of the amazing grace we have in front of us at all times. is a tricky beast to tame. 

Friday, August 12, 2011

birthday are fun!

Chad had a birthday last weekend, we decided to make a two-day celebration for him!  Saturday night Grandma and Grandpa P came down to play with the kids for a couple of hours while Chad and I went to eat and watch a movie!  I probably enjoyed the date night more than he did, but I assure you it was for HIS birthday :-)  It never fails, when we go go see movies, we always walk out of there feeling like we are 17 again going to the movies...which is secretly fun too!

On Sunday we took a trip to Kearney so Chad could get new work boots at Cabela's.  One of my sisters lives in the area, so they met us for lunch.  After lunch we went to Cabela's.  Harper thought the store was the best!  He thought all the animals were sleeping, and wanted everyone to "shhhh" ;-)  We took a trip to the Children's Museum which was great.  The Kearney museum is great...and I preferred it over Lincoln!  There may have been fewer things, but the kids could run around with having to worry about the stairs, etc - perfect.  However, they kids tuckered out before I was ready as I have two friends who live in town and I was hoping to surprise them with a quick visit...and that didn't work out.  

 Charli cracking the eggs for her dad's cake!  Harper waited so nice and patiently...he was sad he didn't get to crack an egg!!

 Haper did get to dump the water and oil which was probably more fun for him!! 

 Charli got to dump her eggs in , she was not about to relinquish this to her brother!

 No matter how much fun breaking eggs and dumping liquids is, it does not beat this part of the process!!

 and this is MY favorite part of the process!!  They had a great time together.  While they were eating I said "lets take your picture" and Harper put his arm around Charli.  Too sweet!

For Chad's birthday the kids gave him a little bit of his favorite things...white cake with chocolate frosting, hunting gear, and things so they can help wash cars!!  They love to give these things, he loves to get them...but most of all they love that they are things to do together!

"my favorite things"
Charli also got to put the sprinkles on and "design" what we put on there!  Ultimately we decided on "31", and heart, and a B, C, & H to sign our names!

When Charli says "31" it sounds like "41" -- which cracks me up!  However, that means whens he says I am "30" it sounds like "40" ;-)

this is how Harper rolls!  It is great to have such a big wagon to carry things all over the house!

Saturday, August 6, 2011