Monday, August 22, 2011

Grayson got his "new legs" (as dad calls them), on the 18th. When I first saw them I couldn't believe how small they were! They seem so tiny but they fit his legs perfectly. He has to gradually get used to them so we started out wearing them for a half hour the first day, then we double the length of time each day. So the next day he wore them an hour, the next was 2 hours, and the goal is to have him wearing them from the time he gets up until he goes to bed.
It started out OK, but Grayson doesn't like wearing them at all now. I think he feels restricted when he has them on. He has to wear shoes with the braces on and they seem large and heavy, so I'm going to look and try to find a new pair of shoes. He can wear "skateboard shoes" over the braces because they are wide. So looking for a pair of Etnies it sounds like. 
 He can stand and get around just fine without them on, but his legs don't stay straight and you can see he's weak in the ankles. So the braces are definitely needed but Grayson doesn't think so lol! Something we sure need to work with though.

Right now Grayson is on his 2 weeks off of chemo and Vincristine and he has sure bounced back! Hes causing trouble and being a boy that's for sure. Also it seems like he doesn't sleep much anymore. Its like hes making up for lost time while he was tired on the chemo lol! Just wish we could do things outside before it starts to snow hah!
I'm kind of looking forward to fall though. Love the chill in the air and the colors that come with it, just not the snow that comes after haha!

Well, let the countdown begin until the girls come home and school starts! AH! Cant believe both girls will be in school soon!! I think it will be fun, I know Lauren is excited. She will be in kindergarten!! Speaking of kindergarten, here they only go for 3 hours everyday....just doesn't make sense to me! I wish they would go every other day. Just irritates me!
We went to Walmart the other day and got all the supplies for both girls...WOW! Talk about expensive, and we went when they had almost everything on sale!

Made stuffed peppers the other night, and OMG YUM!!!
Stuffed Bell Peppers
Click here for a good recipe close to the one I use! :)

Yesterday I made my first attempt at hand dyed shirts/onesies. I think they turned out good~ Hopefully pics to come
Princess Emma did some more modeling pics. This is a ladybug costume lol so cute! :)
You can go here to see some more cute items from the shop she did this modeling for.

Well I better get going and hope y'all have a good day :)

Friday, August 12, 2011

Been trying to learn how to edit and also use my camera properly...Im STILL learning lol!

Grayson's hemoglobin levels were good yesterday so that was nice and comforting! I was worried when we first went back that he might need another one already but he didnt. It was at 11.9! Awesome! His ANC level was back up a little to around 900 so he was still low but high enough to get the chemo again. He didnt get vincristine though because hes showing too many weaknesses at the moment which is caused from the vincristine so they held off on that this week.
Grayson had an appointment the other day for his legs. They are going to get him braces for both legs and they are little custom ones that are molded just for him and will be super flexible so he will still be able to move around a lot with them on. Nothing like the Forest Gump ones I had pictured in my head on the way to the appointment. The crazy downside...they cost $3200!! OMG! :( But he needs them so its just something we will need to work with.

Tuesday, August 9, 2011

Tomorrow Grayson goes for his first visit to see a guy about getting the braces for his legs. I cant remember what the guy is called (professional name that is?). Not sure if he will just get measured and all that tomorrow or if he will actually get the braces. Totally forgot about the appointment until hubby reminded me today. Blah! Seems like the days in between doctor visits goes by entirely too quick!
Grayson seems to be doing ok this last week since his transfusion. The first few days was really bad! He doesnt like when he cant see one of us, like if we leave the room to go do something (ex. bathroom break!) lol he will scream bloody murder! Not sure if its a phase or chemo related. Hate always guessing whats going on with him. Its draining :/
Im debating on whether I want to continue with my online shop or not. I like it but it seems like Ive lost interest and with Grayson always so demanding its like I just dont even care about doing it some days. Sad! Just going to take a little break and hope that I pick it back up. If not, then I will be selling it all!!! And man, there is a ton!

My new "thing" is back to photography. Ive been obsessed since as far back as I can remember. I had actually bought photoshop elements 9 back in January I think it was, before we fully found out what was going on with Grayson anyways. Well I never even downloaded it lol. I set it aside and forgot about it until yesterday. So I went ahead and downloaded it and wow, I feel so out of the loop! I have no idea how to do any of the editing and will be spending LOTS of time on youtube searching how to do the simplest editing. If y'all have any tips, please share them with me :) Im adding some photos and let me know what ya think. *too dark, too light, needs to be sharper...stuff like that :) TYIA! <3

Thursday, August 4, 2011

Blood Transfusion

Today we went in for Grayson's Thursday appointment like always and expected things to be like usual...
*port accessed and blood drawn for lab work
*head over to PT and hang out there for about half hour
*go back to our room and get results of labs
*get zofran via port (helps with neasau)
*wait for chemo to be made (about 20 minutes)
*get chemo via port/IV drip (takes 1 hour)
*get Vincristine push after chemo 
*get a patch on the back that also helps with nausea
*get flush and take out needle used to access port

Today things went a little differently. Started out the same, the access of the port and the labs drawn then over to physical therapy. PT went good and today Grayson was actually warming up a little bit though and he let her play with him. He really needs to work on stretching his right leg more and his weakness in that side is really showing now that the Vincristine is really make him weak. 
Then we were told that Graysons labs came back and showed that his hemoglobin level was pretty low. Like we were told last week that if it just keeps going down then he will more then likely need a blood transfusion. Well today was that day. His hemoglobin levels were just way too low so today he ended up getting a transfusion. It was a scary decision and I wasn't ready for it. I thought we would be able to have Jesse give blood to Grayson, which would have been do-able. But Grayson needed blood and he needed it today. If you donate it takes 72 hours before it can be given to the person. Ugh...sucky! So we had no choice but to give him blood from the blood bank. 
 Taking pics with Mommy like we always do :)
 Grayson LOVES looking at books :)
The Blood Transfusion
Also, Grayson's ANC levels were super low! The lowest I ever even thought they could be really. He was at 174, and remember, last week he was at 2600! WOW...I still cant believe it really! So with those numbers being that low Grayson couldn't get his dose of chemo and the Vincristine was only a half dose. So the major thing done today was the blood transfusion. Before the transfusion, Grayson's blood pressure was a little low also. 
Grayson was getting headaches that must have been lasting all day and he was sooo white and pale. Now hes got some color back from getting the transfusion and we are home!! We were given orders to not go anywhere this week. We cant bring him around any crowds of people and just need to kind of hang out. Grayson's ANC level is why, with levels like that he wouldn't be able to fight off anything and would/will get super sick. 
So hoping that Grayson starts feeling better and we have a good week chillin at home :P

We had the girls and my dad and step mom here Mon-Wed and it was a blast! Emma and Grayson were sooo happy...and not to mention Buddy. He couldn't contain his excitement from the second he saw them lol! He was in there face the whole time there were here hahah! It was a nice little break and we got to go and do our school shopping with the girls and Wanda. A HUGE Thank You to grandpa and Wanda for helping with all the school stuff! You guys have helped sooo much! 
 Emma was so happy to have Riley back. They just lounged and watched tv forever! lol!
And no, its NOT open haha! 
The girls hanging out!
The girls are back up north with them until the end of the month and then we are planning on getting together and all of us going to the State Fair! Its a countdown around here :P 

Monday, August 1, 2011

Love Letters

I have been inspired to start writing love letters to my children. I think it's so adorable and creative and will be something so precious to look back on and tell stories to my kids when they are grown. This is my first try at it so let me know what you think :)
*the girls are up north for the summer having a blast. This pic is from my phone so not the greatest quality :P

Also, things have been starting to look up as far as Grayson feeling better. We are headed into the "good days" after the chemo rounds. Hes been eating good and I spend a lot of my days trying to get him to eat different things, well anything! Just want him eating. The MRI is scheduled for September 1st and Im praying hard that the tumor is smaller. At least give me some hope that the chemo is doing something!
My dad, stepmom, and the girls are headed here today!!! They will be here until Wednesday and I cant wait! It should be a blast! :)

*To see where I found my Love Letter inspiration head Here and also see others that have started doing this as well :) AND if you look closely you can see Miss Journey is wearing an outfit made by Me :) and she looks super cute in it!! :)