Thursday, April 1, 2010

Update on Make a Wish

This past Sunday 2 Make-A-Wish volunteers came to meet our family.  It was very exciting.  They both were very nice.  They brought presents for all the kids to make all of them feel included.  Gary has been granted a wish.  It will just be deciding what that wish will be.  I had mentioned in a previous post I was concerned about Gary's lack of speech and not being able to clearly communicate what his wish would be.  To my relief, they were not concerned about this.  We have time to decide what will really make him happy.  Since we know him best, we get to have a lot input on his wish which is exciting.  We are brain storming things like outdoor play houses, or a playground that is sun protected or maybe both!  It was such pleasure having them at our house.  They will be returning soon to talk over our idea's.  Thank you Ken and Cherelle.

Birthday Pictures

Yesterday I took Gary to have his third birthday pictures done.  We get them done at Picture Me in Walmart because they have a background we have used for the past 2 years.   Continuing with our tradition, we went there.  They took some very nice photos.  It was actually pretty emotional.  It was this time last year, that I knew Gary as a healthy boy.  When there were no troubles or no worries about his future.  A few pictures she took were of him holding a football.  His little fingers wrapped around the tip of the football showing each red little finger.  Reminding me.  Almost yelling.  Those little red finger were causing me flash back of the past year.  Tears came to my eyes.  I didn't share with the photographer/sales girl what he had, or where we had been.  I kept it to myself as she asked how I liked each picture.  I had contemplated not having the pictures done because he woke up with a swollen face.  Puffy eyes, puffy lips, rashy skin.  But I thought you know, we don't get many clear days so I decided just to have them done.  He looked just fine in the pictures.  One of my favorites was a lite silhouette of him looking up to the left on a black background.  Think a few tears ended up escaping from my eyes at this point.  I felt a drunk happiness from being blessed with him.  I felt sadness for everything he has been through.  Then they started sobering me up with prices LOL!  I could spend 500 and get the gold package.  I laughed or rather cackled out loud, placed my hand on the back of her shoulder and apologized for laughing.  I told her that I had not planned to spend that kind of money.  They  do an excellent job of flipping to the next package, as if 400 and 300 or even 100 is any better!   ha ha ha   Sorry,  single income people,  supports 6 people.  I felt like asking can I put him back up there for a second a snap a shot with my camera?  LOL   I know,  cheap   cheep cheep.     So I ended up walking out without any pictures.  I will bring my husband back.  He's my bull dog.  He doesn't mind the award sales pitch being thrown.  He throws one all the time and is very good at it.

I also wanted to share that I had his haircut done before the pictures at Sport Clips.  He did so well holding still.  He was so excited to sit in the chair like a big boy.  The gal cutting his hair was very nice.  I immediately started explaining that he has had about a years worth of a few different chemo's.  So if she saw any spots or hair loss to let me know so we could discuss what would be the best haircut.  She looked him over and said it looked pretty good.  She was expert.  I explained he does not have cancer but a rare autoimmune disease.  She returned with connecting emotion that she too suffered from an autoimmune disease called Alopecia.  Where the body attacks hair growth?  So essentially she had no hair.  She was diagnosed at age 2.  It was nice to talk to her about her story.  She said that she had been treated for years and was done with fighting it. She was beautiful and to look at her you could not tell at all.  Full head of hair, I would never guessed it was a wig of any kind.  She was also a Grandma which I found hard to believe.

Next Overnight

So our next overnight infusion is on the 16th.  I can't believe it is already April.  We had labs on Monday.  He did well.  He got out of there quickly. We go back in tomorrow for another lab.  I have had a few nagging concerns.  The day before yesterday Uncle Bill went to lift him up into the air like he always does, and Gary immediately began screaming and crying  owie owie owie for a several minutes.  He would not let us touch his left side.  I gave him time to recover.  I am still not sure what happened.  I was concerned about a cracked rib or something of that nature.  But he started playing and wasn't complaining after that.  So I dont know.    It is the same thing with his ankle.  We have an xray order waiting at Children's because he keeps limping on it from time to time and it is bigger than the other one.  But he runs and jumps on it so hard to decide whether or not to shoot him with some radiation.  So again, I am not sure.  I will keep an eye on it.   That's what us mothers do : ).  Sometimes I wish my imagination was impaired.  Like the other night when I was running.  My husband, who is good Dad, took my daughter to her swim lesson, along with Gary.  I had this lovely image pop in my head, "oh no, what if Gary falls in and he is not paying attention, and now Gary is floating at the bottom!"    My best friend was there too so I put it out with that thought. She happen to call me as I finished up.  "Can you see Gary?"   "Yeah, he's right here."      Hee hee.

1 comment:

  1. That is so AWESOME about Make A Wish, I cannot think of anyone more deserving than you all! Your just amazing and little Gary deserves this soooo much! I know whatever ya'll choose he is just gonna love! He is such a cutie! I just laughed Out Loud at the Walmart experience because girl I am very gulible and I went to Target like 3 times and I thought ya had to buy the 200.00 packages until finally the hubs showed me a coupon for like 10.00 and I was like I didn't know you could just buy a package of one shot or a sheet of pictures and he laughed and said girl you don't have to buy those gigantic packages they just want ya too....hahahahha I am suck a sucker....

    So have your hubby go and get you a nice sweet package for a nice small price :0)

    I bet they turned out great! I get the same way when I had pictures done with Kelcee and I seen my fingers all red and body red and swollen and face and I cried and my hubby said I was as pretty as the day he met me which made me feel so much better, he insisted we get the colored one for us but for everyone else I sent black and white.....

    Have a great day deary
    Have a awesome Easter and give Gary a hug for me
    Summer :0)