Monday, May 30, 2011

Well Ive had lots of people begging me to update the blog LOL! Sooo bad at this haha! Well as most of you know, hubby came home on Saturday! Sooo nice to have him back :)
 We made this sign for daddy! We were sooo happy to see him! And he LOVED it :)
 daddy was so happy so were the kids, few tears were shed...but happy tears :)
 my best friend <3
Our beautiful family <3

We also took a trip to St. Paul to a little train thingy. Im not sure what it was called. But ALL the boys had a blast! It was pretty neat! We will be going back :)



Tuesday, May 24, 2011

Today Grayson and I went to St. Paul to his appointment with our neurologist. And while I'm talking about the neurologist...HI DR. FEYMA!! We Love You!! You're the best neurologist EVER! And I KNOW your reading this hahaha! :) But really we DO! You have been there with and for us along this not so joyous journey! Part of the family now :)

Everything is set in place and Grayson's next appointment is next Thursday. We will go see the oncologist and then he will start chemo that day. I don't know what to expect or really how to feel. I'm just hopeful that the chemo with help get rid of the tumor and we can be on our way over this little speed bump. 

We have decided that the older 2 girls are going to be spending some of the summer with my dad and step mom. The daycare here isn't going to be able to take them much and with Grayson needing to go in weekly once the treatment starts it just isn't going to work out here. So hoping that goes well. 
Definitely not how I had imagined our summer going, but we will make it work and try our best to still make it a fun summer! One thing I'm really worried about is about Jesse being able to take time off work. Not sure if he will be able to, and if he does its not paid. It will work out, somehow...someway...

Well i better get going, not sure what is going on with Grayson but he is NOT a happy boy today. Hes been really crabby and still hasn't napped today. Poor lil guy. Maybe getting in some more teeth :/  Off to give a few baths and then cuddle time! oooh how I love my cuddles :)




Monday, May 23, 2011

Well i started typing this yesterday, but never finished lol. Its hard work being here with all the kids by myself. They are very demanding! LOL


The TWINS ARE ONE!!! They turned one yesterday! Awwww, man time sure does fly! I did a lot of thinking and looking back at pictures of them when they were just itty bitty babies. Oh and cried a ton LOL! The first birthdays always do that to me. Its bittersweet, they are getting older but they are starting to do more so its just a new chapter :)


My sister and brother left around noon yesterday and we didnt do much for partying for the twins birthday. Jesse is gone at AT so we are waiting until he get back so that he can be a part of a lot of it. I really wanted to let them eat some cake but waiting on that also. And how do you like my cake?? Yep, I made that thing all by myself!! WOOHOO! Go me :)  I dont know that Jesse would be mad either way with the cake but if it were me I would be super sad if i missed it! Sooo we will wait until the birthday party which is on Jesse birthday LOL. His birthday present is the twins birthday party lol!







Grayson would NOT wear his pants or his birthday hat LOL hes such a little stinker! LOL But thats ok with me :) it was his party 2 
I need to get going and head to bed. Its been crazy nights around here! Im not sure if the twins really dont like when dads gone (I know I sure dont!) but they dont sleep well at all! They get up a lot during the night and its so hard!
Its going to be an early day tomorrow. I need to get the kids all ready and off to daycare so I can bring Grayson to St. Paul again for his appointment with the neurologist. Finally! Im really nervous that its just going to be me and I pray I can be strong. 

Tuesday, May 17, 2011

The last few days have been super hard! Mostly because its just me here with the kids. LOTS of stress and little sleep. I get so lonely and cant seem to sleep well when I'm home "alone" with the kids. Always nervous something will happen!
Grayson has his next appointment with our neurologist on the 24th. Sounds like they are wanting him to confirm that his symptoms are related to the tumors growth. I think he just wants to see Grayson again. Seems like he cant go very long without wanting to visit with us LOL. He just Loves Grayson :)
Went for a walk today but didn't go for toooo long because it was super sunny, YEAH!! But didn't want fried babies lol.
Today Grayson decided that he was going to stand!! He did it for the very first time! He has a hard time just putting weight on his legs with someone supporting him so this was just amazing!

how silly is his laugh!?! LMAO!!

And also, since facebook put a halt to all contests, I have started up the website!! Stop by and check out the freebie! Will be doing random freebies and also auctions on there! 


Friday, May 13, 2011

Blogger was down yesterday so I will post the new update now since its finally working! The oncologist had a chance to talk with almost everyone that is working on Grayson's case. They all talked about the new scan and the amount of growth and also the new finding of the apnea. They all agree that they think Grayson should start on chemo. The neurosurgeons said they are all worried that with the delay in messaging for breathing that this could easily get worse with this growth (hope this makes sense). 
So, now we are just waiting to see what the neurologist thinks. If he agrees with everyone else then the oncologist said that they would like to start Grayson on chemo as early as next week. She said its just getting risky with it causing breathing difficulty. Which worries me also, but i wish it had not come to this point. I was praying so hard and had my hopes super high that this tumor had NOT grown, but that's just not the case. 
She talked a little about the chemo he would be on. They would place a port-a-cath in and we would need to go in the the cancer clinic 1-2 times a week for the chemo meds put in, and she said it would last through the fall for sure it sounded like. ugh! :(  She said that most of the patients that take the kind he would have don't usually lose all their hair (but its always possible) and he shouldn't get sick while taking it. She said he could be home with us and do all the family things like swimming and playing and all that! At least is the best news out of all the crap. He can still be home and be a kid. 
Still waiting to hear from the neurologist so wont know more until probably Monday. 

Today we got some new presents in the mail! 
Thank you grandma Sherri & pop!!! <3
LOVE these seats! They take up less room then the infant seats.
Sooo cute :) cant thank ya both enough! don't know if we could have
ever been able to afford them ourselves :/

Wednesday, May 11, 2011

 The kids wearing their colors to support Mr. Grayson <3
 Buddy being the silly boy like always :)


Today was Grayson's MRI, again. So, again we went to Childrens and had a horrible time! The knowledge of the doctors is good, the nurses are horrible, and I know more then they do (but I also have a nursing background lol).  
This time he was fully sedated and had a tube placed for breathing, because with his apnea, the neurologist didn't feel comfortable not placing a tube. Check in was at 7am and he didn't get into the MRI room until 930, PATHETIC and totally pissed me off! Grayson had not had anything to eat or drink since 11pm the night before because you need an empty stomach for the MRI. So mom was NOT happy! 


He finally was in, and we were waiting for around an hour and half-two hours. It was a LONG wait! Super stressful, but when we got to go see him I was just so relieved! He did really well waking up and didn't seem to have an upset stomach or anything. He was NOT happy about the IV that was in his hand though. He kept trying to take it off. But once the nurse came in with some formula he could care less about the IV. He was a hungry boy! LOL He had 5 of those little bottles (2oz each)!! hah! He was good to go after that and has been napping a lot through out the afternoon. Think a lot was taken out of him, poor lil dude! :(
We didn't get answer right away. I called the oncologist before we even left the parking lot nicely demanding answers. Well she called back and said she had the results of the scan. 
Not what we were hoping for....the tumor has grown more. The oncologist said shes worried now that the apnea is caused from the tumor. She was the only one of the team of doctors working on Graysons case that has seen the scan so they were all going to get the copy and go over it tonight and tomorrow morning and then call us tomorrow with what they think we need to do. Its gotten really serious now with the growth and it causing breathing problems. She said that Graysons case is very unique and rare. They don't usually see babies at such a young age with this going on. Hes so young they are afraid of the outcome if they start treatments. Will it be worth it in the end? Need to see what all the other doctors think.
Tumor stats:
Jan.-6mm
March-7x7x7
May-7x8x8


On a good note...We had a visitor! Grandpa came to visit :) He was down here for business, but it was soo nice to get to see him! Grayson was all cuddly with him :)


Tuesday, May 10, 2011

WOW! Its been almost a week since Ive posted?? Man, I'm sure slacking on this blog!! Well I have a few things Id like to say first and then ill back track and add some photos from the last week ;)


First of all, an amazing NEW friend has set up the online benefit auction for Mr. Grayson. She is just an amazing person and without even knowing our family personally, she has done this out of the kindness of her heart! How amazing is that??! This makes me realize that there are truly GREAT people still in this world! ALL of my friends have shown my family this! We LOVE you all so much and thank you all soo much, more then we can even put into words! 
Head here to see the auction LexaMae Fancies 'n Frills you will need to "Like" her page, then scroll down on the page to see the Auction! 
This is the "Emma Bow"
Its made to go with Emma's outfits she wears along with my older girls in support for Grayson, during his doctor appointments. This bow is in the auction!!  The middle of the bow says "Pray for Grayson" LOVE it!!

The Emma Bow can also be just bought here for $20 
There are ideas in the works for little boys to wear, if you have ideas leave a comment below :)
But seriously, how frickin cute is this bow!!???? 

Tomorrow is a HUGE day for us. Grayson has his next MRI and this is the big turning point. We are praying that is has stopped growing or disappeared. If its grown he will need to start treatments. 

So we are asking everyone wear Hot Pink & Black (girls), and light blue (boys) in support for Grayson tomorrow! And please say a little (or BIG) prayer that things go GOOD and that this tumor is NOT growing and our prayers have destroyed this thing! Thank you all in advance! 

We would LOVE  to see pictures of you and your little ones sporting your colors for support! :) you can leave them on LexaMae's Page or email them to me at jessicabarry_2003 @ yahoo dot com (no spacing). 

Here are some pics of the last few days :)











Riley's Grand Day (grandparents day) at school on Friday May 6th


Wednesday, May 4, 2011

Its been busy around here, amazing huh? LOL Well so far the potty training with Buddy is going GREAT! He likes wearing his big boy "unnerwears" and he will sit on the potty chair without me reminding him now. So happy!! Hope it stays this way :)
sorry if the video is crappy lol

We are going to be getting some new car seats for the twins! Waiting for them to get to Walmart (did the site to store thing). Super excited!! It took a while for me to find the right seat that I wanted to buy, i researched like crazy and this one seemed to be a decent price and great reviews! 

But cant believe the twins are soon going to be 1!! I SOOO need to start planning their birthday. But i just cant get into the mood knowing he has an MRI coming up next Wednesday. Just kinda puts me in a funk. :/

Aren't they cute!!?? EEK!! Cant wait! :)

Also, there has been an auction set up by an awesome new friend of ours over at LexaMae Fancies 'n Frills on facebook. We are looking for any donations for the auction and they need to be emailed to nina.lexamae@gmail.com. Please include a picture of the item being donated, along with shipping info (free or not) and a link to your business page or facebook fan page. Items need to be submitted by Sunday May 8th at 8pm. The Auction will run May 9-11th. 
If you can not donate but want to be a part of the auction head on over and "Like" her page!! :) Feel free to spread the word about the auction and thank you in advance. For more info click the picture below, or to find the link to repost and tell your friends :) Our family thanks you all so much and seriously couldn't be more grateful for all the amazing people that have entered our lives and are helping us through this really difficult time  We LOVE you! :)