Infusion #5 / cute haircut

My beautiful daughter Kaylee got gum in her hair while I was gone. So her helpful older sister Camille helped her cut it out. They had to cut nearly 10 inches off a section that was well hidden. But my mom took her to get a much needed haircut and she loved it it really brought out the natural curl in her hair she was so happy with the way it turned out. I better be careful when she's older can't handle the boys knocking down my door.

cute cute cute

Easton being silly with my sister Krista and her husband Derek

We finally made it to infusion #5. I'm was so excited for this infusion because, we finally get to meet some new friends. They were also visiting Chapel Hill . But first things first the actual infusion itself. This was the first infusion where Easton was given a concious sedation or versaid and I was able to finally be in the room for the infusion it was kind of anti climatic though its a very simple process they first gave him some versaid through an I.V. it made him almost in a drunk high state he was very giggley and wouldn't hold still so they had to give him a little more which put him to sleep. Then they clean the port site just like his other port first with alcohol, then the little spongee thing, then they access it, withdraw some csf about 10cc then they infuse the enzyme, de-acccess him put on a bandaid and that's it all in all it takes about 10 minutes. But this month I think we've seen the most progress for Easton while in N.C. he started taking himself to the bathroom saying I got to go stink (which means pee and poop) incase you were wondering since then he has had very few accidents. His speech has come really far also his sentences are much clearer and complete which if you read the last post you already knew. But he also seems to have a greater understanding of things I'm saying it's hard to explain but if you see him or interact with him at all you would know what I mean. Plus dr. Muenzer told me that he wasn't able to give me actual numbers but since the first infusion which lowered his gag level ( gag are what his body is unable to break down so they store in the cells causing tons of problems) 45% in the csf there has been a drastic reduction since then so it seems to be working actually I know it's working. Now we just have to figure out how long it will work and how often we need to give him the infusion tons of research stuff. So yeahhhhhh On to our new friends this handsome little guy is Elijah he is 5 years old and him and Easton could be little tornadoes they were so similar with their actions and personalities. Hopefully will be able to spend more time with them and let these two become good friends.
This little guy is Jack he's 2 1/2 and wasn't feeling good this day he was so much smaller than Easton that Easton was patting his back and being extra careful with him like he was his little brother and he might get hurt or something it was so cute. Hopefully Jack will feel better the next time we see him and they can really get sown and play.
These are some flowers at the hotel that I love I don't know if they would grow in Utah but if they could I want a ton of them in my yard I think they're a hydrangea but not sure?
The hotel also have a mini golf area that we let Easton play with for the past few weeks he's packed around a little golf club and with sporadically yell 4 and then swing so you have to watch yourself or you might just get caught by the swing of the wild. So he loved this little area and he was actually pretty good for his first time.
If he couldn't get the ball in the whole the first time he would move the ball close enough to putt it in. And if that didn't work you can always just pick it up and put it in the whole with your hands yell whoo hoo and give high fives.