This week has been very eventful with some ups and downs...mostly ups though.  I'll start with the downer first.  That night after they took Skyler's breathing tube out they had to put him back on the BI-PAP mask because he was working a little bit harder to breath.  He also kept throwing up.  It would go into the mask and fill it up, we think he may have aspirated a little too.  They couldn't figure out what was causing him to throw up so much so they took him down to do a CT of his brain and sinuses because they thought maybe there could be some pressure building up on his brain causing him to throw up.  The scan came back and his sinuses are clear (finally...yay this is a good thing) but it also showed that his brain had some atrophy.  So basically his brain matter is shrinking and being replaced by fluid.  The doctor told me that the last scan he had a month ago showed a little of this but this scan showed it had progressed a lot more.  I looked at the scan and couldn't believe it, Sky's brain had shrunk ALOT!  The attending told me that he had never seen this progress this fast before.  He told me that Skyler could have brain damage and that he may never regain some of the skills he had before and he may have developmental problems from here on out.  Hearing this was so hard.  Now that his body is starting to get a little better its hard to know that his brain may never be the same.

Later that afternoon the PICU attending had the Oncologist come look at he scan and see what he had to say.  To my great relief he said that he sees this with chemo kids alot.  He says he normally doesn't see it as significant as a loss as Skyler's, but then again most of the chemo kids don't get brain scans.  I was told to put this to the back of my mind and deal with it when it becomes and issue because there is no way to tell how this will affect him right now.  So that's what I plan to do.

Now on to the good news.  Skyler spoke for the first time!  I wasn't there for it because I was down eating, but my dad told me that he said as clear as day "I want my mommy"  How precious is that?  Then later that night he was trying to say something so I took off his mask and he started crying and said "I just want to go home mom"  That was so hard to hear.  Of course I started bawling and had to explain again why we are here and that I haven't left him and I wont leave him until we can go home together.  Then he told me he loved me.  I started crying again, but these were happy tears.  I have been waiting to here those words for so long!  The most amazing thing about this is that I got to hear his voice again.  My little Skyler's voice that I have missed sooo much.  You never know how much you truly love something until it is taken away.  But when you have it back again its such a miracle and I never thought I could be this happy.

Skyler also peed for the first time in two months!!  Yay!  He told me he had to go so we hurried and got him up and he tried going in the urinal.  He tried so hard to get it out but couldn't so they had to straight cath him to get it out, but he made urine and that's all that matters.  He is now going to be on dialysis for just eight hours a day to see if we can get them working more.

Skyler was also to sit up in a chair for the first time.  He did so good and I bet it felt so good for him to get out of that hospital bed!  All his docs and nurses had to come look at him.  They all looked pretty surprised and kept saying how good he looked.  And today I was able to hold him again for the first time in eight weeks.  Man that felt good.  I sat in the chair while they lifted him off the bed and handed him to me.  Honestly it felt like I had just given birth and I was holding him for the first time again.  I couldn't stop smiling.  I got to hear his voice and hold him.  I don't think I could be happier right now.  Miracles can happen :)

Also he was able to drink today for the first time in about nine weeks.  Even before he was intubated all he wanted was a little drink and we couldn't give it to him.  So to be able to finally give him a drink of water was awesome to say the least!  He also had have of a Popsicle.  Way to go Sky! 

Oh he is also just on a nasal cannula instead of the BI-PAP mask which is wonderful for him.  So to sum up, Skyler had a good week and I pray that he will continue to go down this rode.  Keep up the good work bug!

                                         This is a pic of me and Sky right after he peed...

  

 Skyler taking a sip for the first time.

Skyler sitting up in his chair.

  

Grandma and Grandpa wearing there Super Skyler shirts.  I'm not quite sure whats on my Dads shirt, lets just pretend that's not there :)