Im sorry I havent been to good at blogging lately, I have just been so exhausted.  I am constantly on the go taking care of all Skyler's needs, and if my body isnt going my brain is constantly on the go.  I have so many meds due at certain times, I have different nurses and therapists and delivery guys that are always calling, I have to remember exactly how to access and hang his IV meds and if I dont do it right I could really hurt Sky.  I am getting no sleep because I am constantly checking on him and making sure his feeds are still running and the bag is full.  Man this is a full time job but I am so thankful that I can do these things for him here at home.  It makes me feel so good to be able to take care of him by myself.  Im so busy buts its so worth it.  I remember sitting in the PICU and thinking that I was starting to forget what our normal life before cancer felt like.  I was starting to wonder if I would ever be able to see him be himself again and hear all those cute, funny things he would always say, especially after that scare when they told me his brain matter was shrinking and that they didnt know if he would be himself again when he woke up.  But Im definitely seeing his old self.  I love it!  He is just so dang cute, he is always making me laugh and smile. 

Today we had our very first clinic visit.  Clinic is where the oncology kids go to get their chemo when they are outpatient.  They have an infusion room with chairs lined up against a wall, this is where the kids get their chemo and transfusions.  With Skyler's type of Leukemia you are supposed to go in once a week in the beginning to get chemo and then after awhile you go once a month.  We should have been doing this all along, but with all the complications he has had he has just been getting all of his chemo inpatient.  So going to clinic for the first time today was a pretty big thing for us.  I kind of felt a little more "normal."  This morning, however, started out rough.  He woke up screaming in pain from his wound on his bum, and what made it worse, the home nurse had to come and put a new wound vac on because his wasnt working right.  This is always so painful for him.  By the time she was done he was screaming bloody murder from the pain.  I have never seen him in that much pain before, but I wasnt able to give him anymore pain meds because I had already given him the maximum dose he could receive.  Obviously it wasnt touching the pain so I called the hospital to see if I could give him more.  After twenty min of getting transferred from one person to another and Skyler screaming in the background, they finally said I could give him another dose of Oxycodone.  This took the edge off but he was still in pain.  When we got up to the hospital I couldnt find a close parking spot so I had to park far away and lug all of his equipment with me and push his little stroller at the same time.  When we got up to clinic it was PACKED!  To go from being stuck in the hospital for so long and not letting anyone come in the room unless it was the nursing staff because I didnt want any germs coming in, to walking into a room full of people about gave me a panic attack.  To me it was a giant germ fest and I was totally overwhelmed and starting freaking out.  I was told from other cancer moms that there are some rooms you can go in to be away from the other kids if you request it, so I immediately said I wanted to be in one of those rooms.  Unfortunately they didnt have one available because they were so busy.  They told me I could wait out in the hall until it was our turn though so we didnt have to be by all those people in the waiting room.  When we got out in the hall I was almost in tears, I didnt know how I was going to be able to go back in there.  I feel like this whole cancer thing has turned me into a freak.  I was panicking just thinking about it.  Thankfully Skyler's Oncologist happened to be walking by us and saw that I was freaking out.  He immediately went in and made it so we were able to get a room to ourselves.  I am so grateful to that man for doing that.  It was still hard to be in there but I was able to relax a little bit after awhile.  Skyler only got platelets today instead of chemo because his counts are too low so it only took a couple hours.  I was grateful for that too.  We are going to have to do this three times a week from now on because he still needs platelets that often.  This experience was alot harder for me than I had imagined.  I have no idea how I am going to be able to do this three times a week!  I'm hoping that it will get easier with time.  At least we can come home after and thats all that matters. 

I forgot to take my camera with me to clinic so I dont have any pictures of that, but here is a picture of Sky playing our version of bowling.