Saturday, April 30, 2011

Well yesterday we did find out that Grayson does have reflux. The tech said on a scale of 1-5 Grayson is around at least a 3. So now we know he will need to take some meds for the reflux and the tech said try and keep him elevated. But we havent heard from the doctor yet. Monday im guessing...
Today is just a chill day. Its raining out and just praying the kids want to relax and watch movies for the rest of the afternoon lol!
Grayson has been super crabby, doing his screaming fits again. Not sure what they are all about, if its just him being whiney or if there is pain from the tumor. No idea! Hate not knowing. :/
So now we wait..again. I still think no one will let us know anymore answers until after the next MRI on May 11th. So just hoping we can keep busy and sane until then :)

Thursday, April 28, 2011

Sorry I have been MIA. Its been very stressful around here to say the least. I do want to take a second and say a huge Thank You to all of our amazing family and great friends that are here to support us (well not here, here LOL) but I couldn't stay this strong if it wasn't for those of you that lend an ear to listen to me babble on at all hours of the night :) Heart you!!!!!!!!!!! You help me through each and everyday. 
Today we took a lil road trip to St. Peter MN and stopped in at Patricks to have lunch. This is what we came across...Read the 'Chuck Norris' description...
That's right...2-1lb patties plus a grilled cheese sandwich in the middle LOL sooo of course we had to see what this thing looked like...
yes, its the size of a small child! LMAO!
It fed our family...twice haha! 
It was a crazy combo, the grilled cheese and the burger but it really tasted super delish and I'm not much of a burger person. It is a must try :) This place was soo cool!! 

 Showing off her french fry!!!! 

It was so nice to get out and go do something before Graysons next doctor appointment, tomorrow! Ugh!
He will be having an upper GI scope thing, I guess I'm not even sure whats all going to happen it just all sounds scary. Will hopefully be in a decent mood tomorrow so that I can post how the appointment goes. They are checking to see that when Grayson has the episodes of the central apneas at night, that he is at least protecting his air way. Not sure what will be done if he isn't protecting it (not allowing food/spit to come up and possibly enter the lungs). 

Monday, April 25, 2011

 How cute are they!? The onesie Emma is wearing (says 'My Brothers Biggest Support') is one from a friend of mine (Megan over at Polka Dot Junkie) she makes such cute things! She is just Awesome! Love her!! :)
 I made Grayson's onesie, its got a cross on it to match Emmas and I also made the bow :) 

Got some updates in the mail today on the sleep study that was done last Wednesday. The doctors wouldn't say much to us while we were there, the one cant look at us without tearing up. Hes a great doctor and a very kind person, he hates telling us bad news about Grayson. If you remember I was saying the doctors would talk about Graysons results outside the room, but not much to our face. Well in the letter it says that Grayson had 18 times where he had the 'central apneas' and that an average person moves around 5.5 times an hour and he had excessive movement (I don't remember the exact number). I don't even know what that means or what would be done. The letter also pointed to tumor growth as being the possible reason for the apnea. So this tumor is causing him to have episodes of no breathing, its blocking the messaging for the body to keep breathing. BUT they can not come out and say this and are trying not to assume this until the May 11th MRI that will show whether or not this tumor HAS actually grown more.
The other day I noticed Grayson's left eye seems to have a little drooping of the upper eye lid. I keep hoping its just from the way he slept or something odd like that, but its still there....I hate this. My son has something that is inoperable, that appears to be causing him serious problems now. I'm always a nervous wreck and checking on him at all hours of the night because what if it is blocking these messages and they don't get through enough and he doesn't come back from it!? :(  NOT something I ever want to see!!
I feel helpless, I wish we wouldn't have got married 6 months ago  (I know I shouldn't say that!) and just had that money still in savings instead of nothing. We need that money, I want to see other doctors-out of state. I wish I had more time and energy to make more bows to put in my shop and try and make some more money but I just don't. I had someone ask me about maybe setting up a BBQ Benefit back home, it sounds like a good idea and also a lot of work.
Well I'm really hoping the kids all want to sleep tonight. Emma isn't feeling well and Wyatt is a ball of energy lately lol.
I hope everyone had a great Easter weekend :) And tonight, just now, EMMA IS CRAWLING!!!!! She JUST started it! OMG OMG hahaha for cool!!! Gooooooo Emma!!!!!!!!!!!! <3

Sunday, April 24, 2011

Happy Easter!!

Today was the twins 1st Easter!! It was a pretty laid back day just hanging out at home. Jesse worked most of the day so the kids and I didnt really do much. They had fun diggin through their baskets from the easter bunny and finding the eggs! Riley found the golden egg!! LOL she was so excited. 
Yesterday we had went to the Easter Carnival at the school. I was pretty upset last night so didnt want to post. I had a very evil person say that because I am a b*tch that Grayson having a tumor is my OK! She really went into further detail about this. This girl is absolutely crazy and has completely lost her mind!! I just couldnt believe someone would talk like that about a baby. I dont care how much you dislike me, but then to say that about him and then laugh and think it hilarious. Wow is all I have to say!!

But we had a good Easter at home as a family :)

Wyatt was to afraid to sit with the Easter Bunny LOL!! Emma wouldnt take her eyes off of him, and Grayson kept getting tickled by the hairs so he was just crackin up LOL
Happy Easter Everyone!!

Friday, April 22, 2011

I've had quite the day from hell. I am just so stressed out over everything with Grayson and then I have a certain someone talking bad about my kids. Who the hell does that?
Today the twins turned 11 months old!! Holy cow! Where did the time go?? The clinic called and Grayson has an appointment set up for next Friday for his upper GI scope thing to see if when he has this apnea that he is protecting the airway. I did get some pics of the kids today but with all this stress i have given myself a migraine. So I am going to try and get some sleep here soon and pray that im better for tomorrow. We are planning on doing easter eggs and I am hoping to take the kids to this easter egg hunt at the school tomorrow by myself and all 5 kiddos.
oh and the hubby shaved his head and walked downstairs a few minutes ago, he walked in the living room and Grayson screamed!! He freaked out, he did NOT recognize him at all!! hahhahahh poor lil guy! But man it was sure funny hahaha! Hes still got an eye on him right now lol.

Thursday, April 21, 2011

Well the kids went to daycare bright and early this morning so that I could get to St. Paul to be with Grayson and Jesse. I got there around 7am and he was done with the sleep study and he was happy to see mommy! :) He was then admitted to the hospital so that he could be seen by our neurologist, and also the childrens pulmonologist.
When we found out that normal infants can have some episodes of no breathing activity for short periods but then pick right back up-he said 5 episodes of 20 seconds is considered still in the normal rage. Grayson had 16 episodes last night and one of the longest they recorded lasted 52 seconds long. So when I caught him the other day not breathing for the 30 seconds I counted, I must have caught him during one of the longer episodes. They did some feeding and listening to him swallowing and are still going to do a GI scope thingy but they think this is due to the tumor. They think because of its location its causing some delay in messaging, blocking or pushing on some of the central messaging. I hope that makes sense to everyone lol. I understand it but its hard to remember word for word how the doctors describe it. They were all against getting the apnea monitors for now, its an apnea but its due to a tumor so he said the thing would be going off 16 times a night. They didn't give us much information on what else to do, its kind of out of every ones hands and they are just going to sit back and be quiet until the next MRI we guess. He will be having the GI scope/test thing on April 29th, to make sure that when he is having the episodes of no breathing for short periods that he is 'protecting' his airway but keeping it closed and not allowing food/milk to come back up and possibly enter the airway. Which would cause an infection/pneumonia. We could tell the doctors don't want to say its fully from the tumor by saying it may have got bigger, they just want to wait until the next MRI to flat out say that. 
So now this thing is messing with his breathing which is super scary. But we are home now, they wanted him to spend the night again tonight but he was just done. He was super fussy and tired of people messing with him so I said we are just going home for now. Hes happy now that we are home :)
I am happy we are home also, but ready to freak out. I thought we would be able to avoid doctor trips until May 11th and now we had to both drive to St. Paul separately yesterday and today, and we will have 3 more appointments before the May 11th one. UGH! Gas is expensive if every one hasn't noticed this LOL and I also need to be planning the twins First birthday party! :/

Wednesday, April 20, 2011

Today I called the neurologist right away and let him know about the whole not breathing issue the other day and he called back pretty quickly to my surprise and next thing you know we had an appointment for a sleep study! So Jesse and Grayson are at St. Paul Gillette today and tomorrow to see what is going on with his breathing and if he is having episodes during the night where he stops breathing. He also has an appointment tomorrow with a pulmonary specialist in infants with sleep apnea. They are worried that the tumor may be blocking signals for breathing while he laying flat sleeping. Ugh! So scary! But at least now we should know more.
Of course I cant text Jesse, the phone service kind of sucks there I guess. He did tell me something crazy, they are in room 4222...which the twins were born on the 22nd and I always told Jesse I would have them on May 22nd and sure enough I did. He still thinks I'm crazy for this! LOL! Then I ended up being in room 22 before the c-section and the room we went to after delivery was 222 with 2 babies! LOL LOTS of 2s!! This is a whole different hospital so its just kinda weird! Hope it means he will be safe and angels are taking care of him there. :)

Tuesday, April 19, 2011

Today after Riley was off to school the rest of us went on a little drive. We went and surprised uncle Scott at work! Its been a while since we've seen him so we thought it would be nice to go visit with him. Grayson wasn't sure about it, hes been doing that stranger anxiety stuff lately where he whines and will cuddle up to either me or Jesse. He doesn't want to go to anyone else. I think its because he is always with me or Jesse and when we do go bring him somewhere else its usually the clinic/hospital and they hurt him so he just associates new people with pain. Poor little guy :(
We hung out for a little bit and then let Scott get back to work lol. We went to MOA and walked around but it was kid Tuesday so there was tons of kids and it was kind of annoying. I just wasn't in the mood. We ended up just coming home, and when we finally sat down and put Grayson down to play he screamed and was pulling at his ear, lots! So I made an appointment and brought him in. We saw a Dr that we've seen a few times so that was nice and he knows Graysons case. He said Graysons ears look a little bit pink so he gave him some meds for it and hopefully that is just all that's going in. I also mentioned that the other day during an afternoon nap I checked on Grayson and he wasn't breathing, I stood over him staring at him stomach and could plainly see it wasn't moving, I counted to 30 and nothing so I grabbed his leg and scared the hell out of him and he took a huge breath. The Dr said with him being a twin he is at a much higher risk for SIDS and to call the neurologist in the morning and let them know whats going on. The tumor may be affecting his breathing somehow or pushing on nerves when he is laying flat causing a delay in the breathing. Ugh! So that means I wont be sleeping much now. He said there are monitors that we should really look into getting. But we just don't have the money for them right now, I'm trying to figure out a way to get one ordered tonight or even going and picking one up tomorrow morning. I don't think ill sleep until we get one.

It can detect the movements/breathing and if they go 20 seconds without either then a little alarm with sound. 
Its over $100 so that sucks, but if it saves us him, and also some sleep I guess we will find a way. We will have 2!
On a different note, Buddy is soo funny! I bought him these cars and trucks the other day and also some little tractors and they are from Bob the Builder. He LOVES them!! He even brings them to bed with him and says goodnight to them hahah!! When we go and run errands we have to make a special trip to drive by this road they are doing construction on because he just loves looking at all of the "tractors."  
Everyday he NEEDS to watch Mickie Mouse first and then Thomas the Train. He is just in love with trains so Jesse is wanting to take him to Duluth to see the train things there! Hoping we will still be able to do fun family things this summer. 
I went to bed extra early last night. Totally needed it, I was so stressed and run down from the kids the last week. Its like there is always one baby crying and doesn't know what they want. Teething twins is horrible haha!

Yesterday morning I got a phone call from out neurologist. I haven't heard from him in over a month so it was nice to talk to him. He said that now ALL the tests have come back from the lab work they drew from Grayson 2 weeks ago (and also before that). So everything they did to try and rule out certain things was done. He said the genetic testing came back yesterday (the one I had talked about before where it mimics a brain tumor and it also has no cure), came back normal. So that means they have ruled out everything they could to try and say that this is not a cancer (without going in and biopsying it or course-not an option due to location). He said he is very sad to say that from now on he will be referring to this as a 'glioma' also. Glioma is a cancer in the brain, instead of just saying a tumor which can be anywhere, a glioma is only in the brain. He said that the whole time the oncologist has been telling him that she thinks it is cancer, but when she talks to us she doesn't say that, she does but then says that's not what it could be though. So I'm kind of pissed at her for not just being upfront-this is why i LOVE our neurologist!! He doesn't hide things, even if he only THINKS it could be this or that. He at least prepares us for it. I don't like that shes been saying this the whole time to him but not us.

But even though they are saying he has cancer now, I'm still hopeful that it just wont grow and turn into anything just yet. I feel guilty that we spent our savings all on the wedding now, I don't know if I should feel that way but I do. We are still in debt from the wedding 6 months ago!! Now we are planning on a summer full of traveling to cancer clinics. Like the neurologist said "NO parent should have to go through what you are going through." They really shouldn't. I should be planning fun things, which I AM still going to do!!

Since I haven't kept up with the blogging the last week here is a few more pics :)
 Drinking "beer"...rootbeer that is ;)
 Made by mommy <3

 Emma is trying the crawling thing, she will get up and act like shes going to then just fall down lol
 Buddy entertaining the twins with his magic tricks haha
 I'm gonna get u!!

 Playing piano that daddy got for us!!

And I am SO sorry for not getting thank yous out to those that have sent us cards. I will do a quick Thank you on here

Thank You doesn't seem like the right words, it means so much 
more getting the cards and reading the kind words, it helps my heart smile :)

Alisha L.
Juanita M.
Judy P.
Lila S.
Sara S.
Heather H.
Vicki G.
Krystal G. (and Catie, shes so thoughtful)

And a thank you for the gift packages from:
*So Thoughtful of you <3
Shannon T.
Heather K.
And a Special Thank you to 

Saturday, April 16, 2011

Today was a better day, finally! Emma has calmed down a bit from her little screaming and crying fits. Poor kiddo, hate when they are teething! So hard on everyone :( 
Although this morning I did wake up to this stuff. Come on, I thought winter was over!!?? 

Grayson has still been throwing up a lot more each day. Its not much, about the size of a half dollar each time. But frequent throughout the day ugh! 
No better way to start your morning then doing a puzzle or two.

Brought down 4 totes of baby clothes today and got 2 of them marked for the garage sale. Man, its amazing how much clothes a tiny little kid can have! Guess that's kinda my fault ahhaha kid clothes are so cute! But slowly going through and cleaning this house out! We are getting rid of lots of things that aren't needed. YAY! Cant wait to have my house back.
We need to start looking into baby gates! Grayson is on the go, he tried to stairs now so its that time to set some boundaries for this little guy before he gets hurt. 

The kids did some crafts today and got some early gifts from the Easter Bunny!! Here's some cute pics from today :) Thank you Easter Bunny :D

 I feel like I got 'peeps' on my back also boy!
 helping mom with the totes...or not helping lol!
 the final product!! :)

 oooh yours has this little thing...
 look grayson urs has one 2 so leave mine alone!
 ooh yeah ur right emma it does...hmmm
see so now you can leave mine alone! hahahah

Friday, April 15, 2011

Sorry, I have been MIA due to two sick and needy babies. Grayson  and Emma are both teething and crabby as can be!!!! Grayson puking is back full force! Thankfully Jesse was here the last two days to help, its just been crazy. Emma can't really find anything that keeps her happy :/
Hoping to get on here tonight....fingers crossed for happy babies that eat, and nap normally today! :)

Tuesday, April 12, 2011 was just a hard day. Emma woke up with a slight temp, and 3 teeth coming through and was NOT a happy girl one bit. Today she wanted everyone to know that. Right away her crying woke up Grayson and Wyatt earlier then normal by about an hour. So right off the bat, it was going to be a long hard day.
Emma didn't want me to put her down at all and Wyatt took full advantage of this! He started out good, playing on the floor and talking to his toys. He counted by himself to 10! Then counted to 5 in Spanish (I don't sit and teach him Spanish in fact I never have so he's picked this up from Dora at some point lol). About 15 minutes later he was looking at a book of shapes and pointed them out to me and would say "mom, this square?" and it would be a square. Then, "mom, this a wectangle?" and yes it was a rectangle. This went on for every shape in the book and he knew them all! Such a smart boy I have, but he can also be very naughty! Like I said above, he took advantage of mom taking care of a sick baby and a crawling baby....he dumped lotion out in the bathtub, threw clean laundry in the dirty, poured soup in his hair among a few others. He was just on a roll today!
I was at my wits end by the time hubby came home so we packed up and went to the park. It turned out horrible...but had a few good moments :) I realize we need to have hard days like this in order to have the good, but really?? Could take it down a notch! :)
I love the way buddy says Emma, he throws a huge southern accent on it...almost like saying "Ey-mma" LOL or he will also call her "Emmy B" its sooo cute. He calls Grayson, "Gwayson."