Wednesday, July 25, 2012

I'm almost two, hear me roar!!

So it is official.  The terrible twos have hit our house and hard!  I can't say that I'm enjoying every second of it but I am grateful for the normalcy of it.  She screams at me, tries to bite me, hits me if I can't figure out what she wants, and then turns on the charm and woos me with her sweet smile.  I'd say she is experiencing everything we went through with Braden as far as attitude goes and I wouldn't want  it any other way.  

Here is a video to show you how good Kendall is at roaring.  It is her favorite pastime.  There are some roars that get so involved that her vein in her head pops out because of the effort she puts into it:)  Pretend she has pants on in this video.


video

I just realized this week how long it has been since I've update on this.  So much has gone on and yet none of it really seemed "blog" worthy.  It is kind of nice to not have too much to talk about.  Kendall did her sleep study about a month ago.  It went really well in the fact that it was an exact replication of what occurs at our house on a nightly basis.  7 days later we had the results back and they told us exactly what we already knew.  Kendall only slept for 65% of the study and she was on in REM sleep for 10% of the time.  So in short, she sleeps horribly.  Because she breathes perfectly through all of it, they aren't willing to do anything to help us without more sleep studies that show her REM sleep is disrupted.  Well forget that!  We aren't doing that test again any time soon.

Sometime over the past two months we also sent off another urine test to screen for increased markers that would show her Neuroblastoma is back.  This is the test I always refer to as the HVA/VMA.  The test came back about 3 weeks ago and her levels have doubled since last time.  This tells her doctors that her cancer is back, or at least it would with any other child.  We've been through this rodeo before and I know that those tests can be false postitives, although the docs never admit that.  We scan and scan at the beginning of this year looking for cancer and there was none.  This time around we were pretty nonchalant about the results.  It takes quite a bit of bad news to rock our boats anymore.  Of course the oncologist wanted to scan right away but we are just taking the wait and see approach.  We are going to send off another test this week and see what those levels are.  If they come back the same, we will look at redoing another MIBG in the next month or two.  We are about 6 months out from her last MIBG, so it's about time anyways.  It is just so nice to have a few months break in between scans and she is starting to remember just how much she hates anesthesia.

Kendall is making huge strides in physical therapy.  She is doing things that I never dreamed she could do.  I step out of the room during therapy because she becomes a helpless baby whenever she sees me.  She definitely makes her PT work for her money.  There isn't a second that goes by that Kendall isn't voicing how much she hates the work, but yet she does it.  She is given a task by the PT and through whining, she manages to complete it.  Yesterday she was sitting on a bench in front of the couch and grabbing onto the couch to pull herself up to standing.  She can bear weight on her right leg now, just not her left.  Now if you take the PT out of the picture and put me back in, she acts like she can't even roll over with me.  She refuses to do any of it for me.  So in return, I've added another session of PT each week.  Next week we start PT twice a week and we are hoping to start hippo therapy within the next month or so (horseback riding).  This girl is going to have a busy schedule this fall!!

On top of all of this, we have been blessed with the gift of a wheelchair.  We are inheriting one through a family we met through our physical therapist.  Here is a video of her practicing on it while we had it for a few hours.  We should get it for good in the next week or two.  The reason she is crying is because she sees me and that is her game.  SHe had only been in it for a few seconds and already figure out how to use it somewhat.

video

Well I do believe I have ran out of time on here.  Both kids are screaming at me and I need to figure out dinner plans:)  Please pray that these next urine tests come back lower so that her oncologist can stop worrying.  Thanks!

Love,
Steph

ps...sorry about the sideways videos.  I have no idea how to change them.  They are perfect if you just turn your head a bit.