Click to play | Make your own Smilebox

Well here it is! The much anticipated Smilebox of the Princess party! I couldnt get the video portion to work-but when I can you KNOW I will fill you all in!

I love how I was able to capture the moments of her party with this Smilebox.

The party went so perfect! I think they all had a great time. You could hear a pin drop during the craft time! And each girl gave Alexa her gift themself.

Most special to me was to see how accepted Alexa was, and her social interaction with the girls! I tell you these girls parents did an excellent job raising such lovely princesses!

To see Alexa as happy as she was was all I could ask for!

The girls made crowns, necklaces, and decorated jewelry boxes!

We used Alexa’s set and polyshrink, and the center charm for the necklaces, and for the top center of their boxes! It was really cool. Whatever wasnt done got sent home with them.

I’m so thankful for my mom who came to help me set up, and Jason did an amazing job too! He is in charge of the decorations-Im in charge of ordering him round! LOL! If it weren’t for them it never would have gone so smoothly.

He’s use to my stress over these things after all these years and takes it quite well

The best part was when it was all over Alexa came out to me and gave me a huge hug and kiss and said “Thank you mommy for my party. It was so fun. It was the best ever.” Then another squeeze and kiss!

That melted my heart!

All I wanted was for her dream party to go well, and it went better than I could have hoped for!

Thanks for following our journey I cannot believe my baby is EIGHT!

WE ARE HOME!!! We got DISCHARGED!!!

Alexa had a great night, O2 levels were normal the entire time,and they felt she was well enough to get out of the hosptial! What a great present!!!

Im so extatic I could burst!

As we were leaving the floor (Alexa decided to walk instead of take the carriage) the entire staff stood at the exit of the floor and sang happy birthday-Alexa was walking off the floor as they were singing it and she ran by them saying Thanks everybody Im outta here! it was so cute. I pray I dont have to go back there till the last day of Chemo! I will go to say thanks and goodbye! But hey one day at a time right?

Then we arrived home to a GORGEOUS bouquet of flowers from Diana (BIG THANK YOU!!! Most beautiful bouquet and ballon ever) bunch of cards, and packages! OMG! You are all so sweet. Thanks to all of you for the well wishes, thoughts and prayers. We still arent fully out of the woods-we dont want a relapse!!! We have email birthday wishes, and messages on the phone! You are all just amazing and bring tears to my eyes. I hope to replay top you all, but thought Id post ONE HUGE THANKS here!

I have a TON to do today, and tomorrow but promise I will post lots of photos-most likely Monday-ish. Please bear with me Im in overload!

Then its a doctors visit Tuesday and Chemo on Wednesday! YIKES!

Its a gorgeous day and God has truly blessed us!

Just wanted to let you all know the awesome news!!

See ya later! And thanks again!

HAPPY BIRTHDAY ALEXA!!!!! I LOVE YOU!

Hello stamping friends. I have alot to share-and really want to say that I truly get energized by all the wisdom you share, or thoughts, and hugs or prayers you send.

THANK YOU AGAIN.

OK so where do I start-

Well the o2 levels keep dropping at night. There was just an epiphany amongst the doctors after my pleading with them to figure out WHY can she look amazing ALL day AND night but only at night her O2 levels fall so low-and she looks still HEALTHY?? Im was like there HAS to be a REASON. These things dont happen for NO reason!

DING! The lightbulb lights up-and they order labs (waiting for those results) one of the meds she is on can affect this type of thing!

HELLO! Why was this not a thought SOONER???

So we will see what happens with that. That result can seriously inmpact future thought on her O2 levels

Alot of people asked “what the NORMAL O2 saturation is ”

well

90-100% is “normal” generally above 96% is better.

Alexa has been 71-75% at night. You will notice MOST people from about 92% -88% start to get blue in the fingers and around the mouth, 71% um yeah usually WAY BLUE-I would FREAK OUT if this happened-like so much so I dont care what state you live you would hear my screec of PANIC.

Alexa is as pink as a piggy-perfect. Now that my friends is WEIRD. She is one big walkin puzzle piece.

They also agree that due to her heart surgery her O2 levels may normally fall during the night and her body has learned to compensate for that.

So we will see.

Now for the totally AWESOME news-next best thing to going home-

They are giving us 2 DAY passes to go home!

What does that mean you ask? It means that Alexa can go HOME for a few hours during the DAY-tomorrow-where I will then stay at home to prep for her party on Sunday, while her “Pretend dad” (LOL! aka-her biological father-sorry if you knew him or the story you’d get my horrific sarcasm he is quite the jerk) will take her back to the hospital for the night, and she can come home again Suday, for the day in time for her party, then go back Again after. UNLESS by soome miracle she does well enough to be discharged, but Im not even getting too hopeful with that right now. Ill take the little piece I can get right now, and that is giving Alexa her much anticiapted and well deserved day!

Now what is the day pass thing about you ask? 

Since she is perfectly fine during the day, and I am super mom (LOL!) they trust me with her. No pessure right? I can take her home for a few hours. This is not a light thing and not regularly practiced. But when dealing with kids like Alexa when special occassions arise they do their best to let them have as normal a life as possible while getting treatment.

So yeah!

Now for the brownie comment.

I unfortunately am a stress eatter. Being one is a vicious cycle-cause you eat the HUGE MOIST CHOCOLATELY yummy brownie and you feel “happier” till 8 browne hits you in the rear-litterally and nothing fits, then you are depressed again-causing you to eat yet another fine fattening dessert. Now your clothes are snug and definitely NOT happy. All the hard work you did to lose the last bad gain of pounds is out the window!

So by now you will see I found the most amazing brownies here at the store, and instead of snuggles from Jason I am eatting those. WHY OH WHY! I really wish I were a stres anorexic cause then I would look HOT!!! Pre-baby sexy! LOL!

Thank God Jason loves me like I am right? I am very lucky

OK its getting late. I have suffered serious migraines today-most likely stress related-go figure. I was trying to lay down and get some rest, and Alexa wanted to go to the playroom. I was quickly informed “C’mon Mom, let go! You are SO lazy!!!”

KIDS!

I cannot wait to post-the photos and Smilebox of Alexa’s party. Thanks again for the prayers!

Where do I start. Thank you again for the well wishes, emails, thoughts and prayers.

Sorry its late. I ran around all day on less than 3 hours accumulated sleep.

Good News-Ambers murmur is fine! Thank GOD!!! Thank you for prayers and concern-at least I have answers and can rest on that.

More good news-Why seriously focus on the “This hospital stuff sucks, and being here for Alexa’s brithday would suck worse” type attitude. Im over that! I am sitting here looking at her sleeping-and and just plain ole thankful! PERIOD!

You know why? Cause there is much worse a situation that I could be in. She could not be with us. Im am blessed that despite the rollercoaster we are mainly on the UP, compared to too many. So what if we are stuck here. BIG DEAL.

It will be OK.

I believe that. I have to believe that. We will have a next week! And thats all that matters.

SO all in time we will go home and resume our new type normal, we have come to know over the past 1 1/2 years. Whenever her little body is ready.

So PLEASE keep Alexa in prayer for her lungs to clear and let her be free from needing oxygen.

And thanks for “listening” to a crazy sleep deprived, and thankful mom ramble about her new found attitude. One I do usually adopt but this time was late in the game.

Tomorrow is another day.

Ill let you know what happens.

Oh boy, am I ever bummed.

Alexa had a rough night last night, and her oxygen levels were hovering at 75%. Needless to say we will NOT be coming home today. I should have remembered that the minute you get all psyched to go home something comes up.

I hate being here for so many reasons.

God only knows what else she can pick up here as well.

I just saw the doctors this morning since we arent going home. I just found out we may be stuck here till at least Friday!! The family next door to us is dealing with the new reality that their 3 yo little boy has Cancer. So they are busy with them-understandably

This is old hat for us-I remember sitting where she is today. Looking at the long scary road ahead.

I am thankful we are 1 year and almost 7 months into our 2 1/2 year treatment.

Alexa has overcome many obstacles before, so I remain prayerful, and hopeful for my baby, and hers, and every-other person going through this.

There are alot of kids with Cancer on the floor this week-you can see winter is near. We ALL dread this time of year for just this reason-long scary hospitalizations of unknown consequences.

OK Im off now-Alexa wants to go to the playroom, and Im upset. The later we get home the less I get done for her party, and Im just stressed.

Amber had a heart murmur detected and has a cardiology appointment tomorow for tests, that I wont be able to make, and that is really stressing me out.

OK pity party over.

WOW are you all the bestest group of people a girl could have!!! I so appreciate the prayers and support. You have NO IDEA how much it helps me get through. This entire 1 1/2 year process thus far, has aged me 10 years-I swear.

I have excellent news-prayers are really workin!

How many people pray for their child to have a bacterial infection? Seriously?

Well when you child cant effectively fight a VIRUS- you do.

Alexa looks AMAZING today!! Like a whole new girl. Antibiotics are workin and her immunity levels have sky rocketed-in a good way, so much so that they are testing to ensure her immunity level is where it says it is. The test called IVIG. So lets pray that God is showing his power.

If her immunity is LOW then they want to attempt to SAFELY administer IVIG to her. Alexa had an anaphylacitc reaction to that last time they attempted it-like serious!

So Im not too sure Im down with that-even attemptig it again is reall scary, so they may have to get through me FIRST cause Im not thinkin thats gonna happen.

BUT lets see what happens first.

She has gone back to being demanding and ordering me around for 3 different flavors of ice cream and all that fun stuff!

Needless to say, if  all stays well, no fevers, she can get through the night without O2 then we can go home tomorrow!!!

YEAH!!! Im still going abit nutty here-not havin any good coffee! You know me and my Dunkin Donuts. I hardly slept at all-the chair by day bed by night does not cut it. No complaints-it could be worse, I know.

Also an update of the CHaD fundraiser-they were hoping to raise $25,000, and they raised $34,000!! Yeah!! And to all of you who may have participated-thank you!

ll let ya know!

LONG STORY SHORT 

Well the much anticipated possibility has happened-Alexa has gotten pneumonia and here we are in the hospital at Dartmouth Hitchcock.

She started to take a turn early this morning-and lo and behold she has pneumonia in her right lower lobe.

Her breathing is labored and she has fevers on and off. She went from OK to so not ok in just 2 hours. She has been so out of it all day, and when she is awake is miserable and vomitting tons of mucous-

Last year when this happened it was a NIGHTMARE, as we have to depend on Alexa’s own immunity to fight this-something that is already compromised by her Cancer and Chemo treatments

We are hopeful she will be OK for her big Princess party this weekend. The doctors are doing their best!

She is on some “big gun” antibiotics, but they are thinking its VIRAL-

Please say a prayer for Alexa, that she recovers quickly, and does OK.

Needless to say I have NO IDEA how long we will be here-and I cant access my photos from here, so no eye candy.

Im so stressed right now-where s my Vanilla Bean and Kahlua Chiller when I REALLY need it?

If you get bored give me a call here! LOL! Alexa is sleeping pretty much the entire time. I forgot how utterly boring and exhausting this is.

Ill keep ya posted! Just need to hope Alexa’s counts fight this nasty bug.

Well here is the much promised Smilebox of Amber singing the Apple Poem she learned in Pre-school! After we went apple picking she sang it the whole ride home in the car. I knew I had to find a way to share it with everyone.

Truly a MOM moment.

Im not afraid to be one of those parents who GUSH over their kids! Dont we ALL think our kids are the cutest on the planet? So here I am saying it-she is adorable and would make the cutest commercial EVER! LOL!

Hope you like it. I know this is one of those moment that will be so precious when she is all grown up. You have to love the little kid voices they have.

If she stays this cute Im in BIG trouble.

Click to play | Make your own Smilebox

Thanks for lookin!

Well since you all LOVED the “movie” of Alexa and Amber I did a movie/photo clip of Alexa getting her Surprise Princess Party Dress! You all have followed Alexa’s story and agonizing journey I thought you may enjoy this.

Wait till her party! Now that will be a great video. All the details leading to this video can be read below. Not a reader-no problem-watch the video!

BTW-I hate my valley girl voice, and I am originally from Massachusetts hence the probable accent.

Here it is!

Click to play | Make your own Smilebox

Her actual birthday is the 29th! I got ONE RSVP to her party today, and am anxiously awaiting more! Alexa is so excited for her Princess Costume Party-its insane!

I bought her a really pretty purple Princess Costume dress. In NO WAY CHINCY. You could easily wear it as clothing. She loved it,  but when she put it on said “Oh but its not a Cinderella Dress.”

I was quick to ask her if she wanted Cinderella instead of the purple and she basically spared my feelings by saying “Well this one is pretty too! Its OK Ill wear this one to my party” I thought OH GREAT! She’s secretly disappointed. Now THAT is the type of thing you NEVER forget. I can see it now-20 years from now…………………………..

” Mom, remember my cool princess party. Its was really great. I really wanted that Cinderella dress. That would have been perfect. Remember X (insert girls name) She came in the dress that I wanted. She got to be Cinderella for my party.”

Well you know I couldn’t let that happen! The girl wanted a Cinderella dress ,well then she was gonna get a Cinderella dress. You only turn 8 once ya know!

So my online hunt began! For a mere $60-$80 I could get one online! GULP! Explain that to a DAD! Guys do NOT understand nor do they care about the NEEDS of an 8 year old girl, who NEEDS a Cinderella dress! Let alone one at the cost of $80 then shipping!

My dear, sweet, very pregnant-like due literally today-PSF friend Tracey said Hey Im going to go to the Disney store and try to find a dress for you! She knew there was not one close to me, and the kids have been sick! So she and her very preggers self, along with cutie pie daughter Shannon not only went there to find the PERFECT Cinderella dress but they found the matching GLASS LIGHT UP SLIPPERS! HELLO!!!

The dress was on SALE! $25! Unless she lied to me and in that case I would NOT be happy! And its beautiful!

Thank you so much girls for helping me find the perfect dress for Alexa’s party! I wish Shannon could go!

Paulette-if you are reading this I would love for Ally to come but was unsure if it was “too young” for her. If not, let me know. She is just at that ‘age” when you arent sure what is too young for her KWIM??

So anyway-that is the whole dress story! Imagine when the girls get married! Good Grief!

I did get an amazing compliment about the invite and party festivities! Cant Wait!

Well I better TRY to go stamp something! Havent done that at all today.

Tomorrow I’ll share my Blogger’s Challenge! (Oh yeah now I really need to get inking), and a Smilebox of our Apple Picking adventure. Wait till you see Amber sing a song! OMG! WAY cute!

 Here is Alexa the other day! She has been spiking her hair, the combing her small bangs to the side, and putting a barret of head band! LOL! Her hair is finally growing in nice. It actually does look really cute. She looks so old in this photo to me! She will be 8 on the 29th! Still no RSVP’s to her party-HMMM!

This post is family related-no stamp talk!   I had a post planned for today WHINING about rejection! RIDICULOUS! There are so many more important things in life sometimes, than WHY did this card not get accepted and whatnot. Im not saying people have no right to complain and get upset-I do too! Just somedays I acknowledge life is so precious. And there are worse things than rejection.

 I had a LIVE inteview for our local Radio Station in town this morning. I spoke with Nazzy from WJYY. They are working to raise money for the Kids with Cancer at CHaD. Their goal is $25,000!  He is staying up on the Zipline till the money is raised. Sadly they are far from thier goal, and he has been there for over 24 hours now.

I was there to speak about Alexa and our expierience with Cancer, and at CHaD. It just ook me back to that first day, and those 9 months in the hosptial. And NOW! How blessed we are to still have Alexa with us. I never forget that-just today made me sad. Some parents aren’t so blessed. Caner is cruel disease.

You dont know what that will feel like till you are THERE. I true nightmare! And it can happen to ANYONE-sadly.

So, for the radio staion stuff- Check that out ——>HERE This is where you can help make a difference!

I love speaking and helping in any way I can. It was hard to talk about our expierience but I got through the LIVE interview with no problem!

He even told me after the interview, I ahd great prescence, and I have a great radio/speaking voice, and thinks this thing is my calling! LOL!  Dont know about that. He said I should publically do stuff more often-YEAH dont know about that! He also said he loved my story, and how I advocated! What a nice compliment. I do feel compelled to make a difference in any way I can, and he confirmed his belief God put me on this path for a reason.

I dont know why God wants me doing anything-LOL! But here I am. 

I wish I could get a “copy” or something and have people here listen to it!

Please check it out, and if you can afford to-make a difference! No amount is too small!

Also please pray for Alexa today! She is starting with a cold, and the littlest cold can seriously turn into a life threatening virus/ illness for her. I dont want her to end up in the hospital.

Thanks-

Ill try to post later, Im now having a sad day. Just listening to the doctors and other families talk about this, has taken an emotional toll on me, and Im worried about Alexa’s cold.

Sorry no cheery upbeat stuff to share.

If you do help-thanks so much! Even if you cant afford to, thanks for reading, and any prayers you send up for Alexa today will be so appreciated! I know God heard every voice that prayed for her when this all happened.

Have a great day!