Wednesday, July 6, 2011

I cant believe the walk is in three days.  Im getting so excited!  If you emailed me your shirt size I have them ready for you.  If you want them before the walk you can email me and I can either drop them off or you can come pick them up.  If not they will be waiting for you at the walk.  If you joined after I ordered shirts or forgot to email me I still have something you can pin on your shirt that says Team Skyler.  My email is  Thank you so much for your support, this really means so much to me and to the kids who have fought, still are fighting, will fight, and for those who have lost their fight to this horrible monster called cancer.  Its not too late to sign up to walk or to donate, you can go here to do so:

Skyler is still doing great!  His levels are dropping nicely and we will hopefully be going home tomorrow.  They still want him off all antibiotics and his antifungal until Sunday to really see if those are the cause of these fevers, so that means I dont have to hook him up to anything for 4 days.  I am beyond excited for this.  This is a MUCH needed break for the both of us.  Ever since August 17th 2010 (almost a year) Skyler has been hooked up to something EVERYDAY.  Even since being home in January I have had to hook him up everyday, and for months I have been hooking him up eight times a day.  The most sleep I have gotten in one night is 4 hours so Im really looking forward to this break.  And Im so grateful that Skyler will be able to not have to drag around a pump all day long! 

I did get an unexpected blow today with some not so great news.  For at least a week now I have noticed that Skyler cant hear what Im saying alot of the time.  I am constantly having to repeat myself so he can hear me.  It has gotten to the point where I became really concerned and brought it up to our doctors a couple days ago.  Today Skyler had an appointment down in Audiology for a hearing test.  I was expecting them to say he had a little hearing loss due to a ear infection, but what they told me shocked me.  He has significant hearing loss in both ears that will probably require hearing aids in both ears for the rest of his life.  What?!  I couldnt believe it.  He can ear low tones ok but higher pitched tones he cant hear.   He can hear that we are talking to him but he cant understand what we are saying.  They weren't able to do a complete test on him because he wasnt feeling good during it and couldnt sit there the whole time so they are going to repeat the test when we are outpatient, but if they get the same results he will definitely need hearing aids.  Our oncologist said the culprit of the hearing loss is one of the big gun antibiotics he was on in the PICU when he was really sick.  Even though this seems like such a minor thing compared to what could have happened to Skyler, it still makes me sad he has to deal with this for the rest of his life.  Im so glad he will be able to hear properly now and get the help he needs but kids can be so cruel to other kids that dont look like them.  I hope he wont have to deal with mean kids when he gets to school.  He will still be the cutest kid ever though and Im sure he will make those hearing aids look GOOD!  I love you Skyler and I am SO proud of you!

           Waffles and frys for breakfast...gotta love hospital food

He got a marshmallow shooter from his friend Tyler and he has had a blast shooting me with it!


Susi said...

So glad things are going well!! Hope you get some sleep too! That marshmallow shooter is awesome. Where did they even find that??? haha

rcbe1 said...

I have been following your blog for about a year now but have never commented before.Skyler is the cutest and I know as parents we want our kids to perfect and not have to be "different" than other kids but the hearing aids are so small now days that I bet you'll hardly even beable to notice them:] So sorry he has to continue to go through so much he really is SUPER Skyler I will continue to keep you guys in my thoughts and prayers. You are both amazing!!! Charlene from Riverton

Briana said...

I'm so sorry about the bad news. Even though hearing loss is "minor" compared with dying, it is still a huge blow and an adjustment for you both. You are right though - he will rock his hearing aids. With parents as gorgeous as his, he is going to be such a stud. :)

The waffles and fries made me laugh out loud. Hospital food is the best. Sweet boy.

Schmitt Family said...

Skyler, you are so strong! Definitely our hero! And Crystal, what an amazing mother you are!! We are so sorry to hear about Skyler's hearing loss, but you are definitely right. He will make those hearing aides look great!! We love you guys! Chandra and Jessica