Hayley's Make A Wish Trip MAW/GKTW (Nov/Dec 2010)

[EnchantedPrincess]

Yay..glad that she wasn't admitted! I hope her cough gets better, and that you get good test results next week.

Hayley's appointment yesterday at the CF clinic was so so. Her first round of PFT's (Pulomanry Function Test) were not good numbers. She has a pretty good cough going on right now and I thought for sure she would be admitted into the hosptial for IV antibiotics, but the doctor listened to her and said her lungs sound clear. So that is good. We did an albuterol breathing treatment and then did the PFT's again and her numbers increased, so this was good as well.

He gave me a prescription for an oral antibiotic. If her cough does not get better in the next few days or gets worse, we will fill it and see what happens. We did a throat culture, to see what if any bacteria are growing in her lungs. Results on that should be back on Monday or Tuesday for that.

She did gain weight and grew taller, so those are both good.

So now we play the waiting game. I guess if she was going to get sick, better now then closer to the trip. If we end up in the hosptial, she will have to do two weeks of IV antibiotics, but we still should be able to get done and all better before our trip!

Our trip is only 31 days away! Woo Hoo!

So please keep your fingers crossed that Hayley gets better soon and we can avoid the hospital!

 

[rcq925]

Guess what came in the mail today?

TWO BIG GIVES!!!!:banana:

We had a busy night, school carnival at the kids school, but they could not wait to open the presents, so we opened them really fast and headed to the carnival. Hayley did not get to try on her outfit, so I will post a picture of her in it tomorrow.

First Big GIve was from Jenny (DIS id: EnchantedPrincess)

Nathan LOVED his Phineus shirt and wants to wear it to school! Not until after the trip!

Hayley LOVED LOVED LOVED her skirt and Minnie shirt! We did not have time to try it on before the carnival and after we had a hour and half of vest and breathing treatments to do (plus she got her hair spray painted blue and pink and had on face paint. We did not want to risk getting anything on her beautiful outfit, so we will wait to try it on and take a picture until tomorrow!

Jenny also included some pixie dust that was much appreciated!!

THANK YOU SO MUCH JENNY!!!! We appreciate all you did more than words can say!!!

Next up is a Big Give is from Wendy (Dis id: billwendy)

Mom and Dad got something this time!!

Beautiful Mickey Head shirts with a hawaiian theme! Perfect for O'Hana!!

Hayley got a beautiful princess hair comb! Which she absolutely LOVED!!

A few more pictures of our gorgeous new shirts!!!

THANK YOU SO MUCH WENDY!!! We so appreciated all the time and effort you put into making us the wonderful shirts!!!!

We are all going to be styling on Hayley's Wish Trip!

THANK YOU AGAIN JENNY AND WENDY!! You guys are awesome!!!

 

[cantwaittoseemickey]

Love the Big Give shirts! Those are adorable!! I have never seen a princess hair clip like that before. Too cute! The Minnie outfit and Pheneas shirt are awsome! She has such a pretty smile How cool you will all match

 

[billwendy]

Yay!!! you guys look adorable!!! I was hoping they would work for Ohana!!! Awwww, the little princess looks adorable too!!!! Im so glad she like the pixie dust. You guys have a WONDERFUL TRIP!!!!!!

 

[rcq925]

First of all let me post pictures of Hayley in the Minnie outfit that Jenny made her!

Doesn't she look adorable? THANK YOU AGAIN JENNY! She loves this outfit!!!

Today we got two MORE BIG GIVES!!! And we have one waiting for us at the post office! We were at Nathan's flag football game when the mail came and we got a notecard telling us we have a package at the post office. I will get that one on Monday!!

So first up is from Jen (DIS id: Scouthawk).

It was a beautiful Christmas dress that will be perfect for Christmas at Give Kids the World and the MVMCP!!! Hayley loves it! She really loves the Mickey and Minnie and little tree lights on the front!

THANK YOU SO MUCH JEN! She is going to look so cute in it!!!

The next package was from Dania (Sorry I am not sure of your Dis name, I did not see it on the package!!

Some wonderful Pixie Dust from Dania!!! The kids loved they little bags and the autograph books!! The cards and activites will give us some great things to do on the airplane and limo ride!!!

THANK YOU SO MUCH DANIA!!!
WOW, I am just overwhelmed with emotion when I think of all of the wonderful things we have received from the BIG GIVE!! Thank you from the bottom of our hearts for helping to make Hayley's Wish Trip so much more special!!!

 

[ellenbenny]

I'm loving all of the Big Give gifts! What beautiful clothes and fun pixie dust!! So glad to see such big smiles!

 

[PEANUT1]

Hi. I am enjoying your thread!!
We are arriving the same day as you..your children are beautiful. Enjoy the rest of your planning.

 

[scouthawkk]

So first up is from Jen (DIS id: Scouthawk).

It was a beautiful Christmas dress that will be perfect for Christmas at Give Kids the World and the MVMCP!!! Hayley loves it! She really loves the Mickey and Minnie and little tree lights on the front!

THANK YOU SO MUCH JEN! She is going to look so cute in it!!!

Wow! That got there quick! I wasn't expecting you to get it until today! Hayley looks beautiful in everything. I am glad I was able to take part. I had so much fun making this dress! Have a fantastic trip!!!!!

 

[rcq925]

I just cannot believe the generosity of the Big Givers!! You are all such wonderful people for all you do for wish kids!! Words can never express how truly grateful and thankful I am for all you have done for our family to make this a wonderful trip!!

THREE, yes I said THREE BIG GIVE packages arrived today! I think the kids thought it was Chistmas!

The first package is from Cheryl (Dis ID: wdwmickey).

It is a gorgeous scrapbook for Hayley's Wish Trip!! This thing is truly beautiful and I know took so much time and effort to put together! I can tell all the love that went into making it!!

THANK YOU SO MUCH CHERYL!!!!!
I am not at all "crafty" and I could never had put together a scrapbook this beautiful! It is going to be so beautiful when we add all the pictures to it and something that Hayley will always have to remember this magical week of her life. Thank you so much! I will be sure to post some pictures of the completed project when we get it done!

Next package is from the Macoy Family (Not sure of your Dis ID.

Nathan LOVES his shirt! It is so cute! And looks great on him (if I can get him to keep the collar down ) He keeps thinking he is a cool dude with it up!

Hayley absolutely LOVES her dress Sleeping Beauty is her favorite princess and pink and yellow are her favorite colors! The dress is perfect for her in every way! She looks so beautiful in it!! I finally found a few little white T-shirts at Target today (do you know how hard it is to find short sleeve, plain white shirts in the fall in Indiana?) to put under a few of the dresses she got, in case it is a little cooler in Orlando than I am hoping it will be!

THANK YOU SO MUCH TO THE MACOY FAMILY!!!!

I so appreciate all the time and love you put into making this beautiful dress and shirt!! Can't wait to have the kids wear them to Disney World!!!

The next gift is from Allison and Malachi (DIS id: TEBI73)

We all got matching family Wish Trip T-shirts!!! And they had a favorite character for each of us!!!! (Sleeping Beauty for Hayley, Minnie Mouse for me, Yoda for Nathan, and Grumpy for Shaun)

It was only the four of us at home so we had to take a picture of the girls and a picture of the boys, since we could not take one of all four of us together!!

WE LOVE THE SHIRTS!!! Can't wait to wear them!

This package also included some pixie dust for the kids. Some coloring activites to keep them busy on the plane!! And a Family photo frame that will be perfect for a great picture from our trip! Hayley wanted to know if that was a picture of you guys in the frame?

THANK YOU SO MUCH ALLISON AND MALACHI!!!!Thank you for the time and love you put into make the family shirts for all of us! I can't wait to get a picture at Disney with the four of us wearing them!!!

THANK YOU! THANK YOU! THANK YOU! Words just do not seem to be enough, but the time, effort and love you have all put into these gifts is truly appreciated more than you could ever know!!!

 

[rcq925]

Hayley's cough has not gotten better, a little worse in fact. So we filled the oral antibiotic and are hoping that will keep us out of the hospital! We should know in about 48 hours if the oral antibiotic will help or not. If not, into the hospital we go. She will have to have 14 days of IV antibiotics in her port. Luckily we usually stay in the actual hospital 2-5 days until they get her medication levels correct and she starts to improve. But we are down to 26 days left until we leave, so we will be cutting it close!

Please keep Hayley in your prayers that she gets better quick so she can enjoy her trip!! Thank you so much for any prayers!

The Big Give gifts are certainly keeping her spirits up and making her smile!! Thank you so much for that!!

 

[my*2*angels]

I am so glad you all are LOVING the give gifts!!! I have never met a group of more caring people!!! I just LOVE all of the pics of everthing, just seeing the smile on your kids faces is AMAZING! Truly beautiful gifts!!! Thank you Big Givers!!!

I certainly hope Hayley gets better soon!

 

[wdwmickey]

I'm so happy you like the scrapbook I loved making it. Prayers and pixie dust on the way that Hayley feels lots better real soon

 

[kiwigirl]

Big Give Family - you are so awesome to make and send such gorgeous gifts for this lovely family. Well done all of you.

I hope Hayley is feeling a bit better soon!

 

[that's nice]

Wow... what awesome gifts!!!!! The Big Give is so great isn't it?

I am so sorry to hear that Hayley isn't getting better. I hope the medication works and she won't have to get admitted.

 

[rcq925]

Well bad news today! Hayley had to be admitted to the hospital today. He cough was getting much worse, she started wheezing a lot, and her oxygen saturation was falling too low at night during sleep.

She is on an IV antibiotic and IV steroids to help her get better fast! She will probably have to sleep with oxygen tonight. Our doctor wants her above 93 and she was going down to 90 at home in her sleep. So she will have to stay in the hospital until she can get through the night without oxygen. We are hoping it will only be 2-3 days and then she can come home and finish the IV's from home, we just give them to her.

I guess in a way it is better that she gets sick now and that way she can be good and healthy when we leave in 26 days! Normally IV antibiotics are 10-14 days in length, so she should be all done prior to our trip.

She did get another Big Give Package tonight, but we will wait until she gets home to open it because I don't want to take it to the hospital and get hospital germs on whatever may be in the package!

Thank you so much for all the well wishes and prayers for Hayley to feel better!! I hope they work and she can come home soon!

I am out of vacation days at work (using them last winter and spring when she was hospitalized 3 times in 4 months) until after October 30th. I was able to leave work today and get her all admitted and set up, but Dad will have to be there with her and stay the nights with her until Friday. This makes me really sad because I am usually the one who spends most of the time with her and I don't like being away from her! But I know she is in good hands! She has her favorite nurse tonight and we love our doctor and all the nurses on the peds floor at our hospital!

Anyway I am going to quit babbling now and spend some time with Nathan!

 

[Tinker_Tam]

I am so sorry this is coming up now. Hopefully this will be the last thing to hit before the trip and Hayley will have the best trip ever!

 

[llaxton]

I hope she gets well soon. I will be praying for her.

 

[scouthawkk]

Oh, I am so sorry she had to be admitted! I hope all goes well and she is feeling better for her trip!

 

[wdwmickey]

I hope Hayley feels better really soon

 

[my*2*angels]

I am sorry Hayley had to be admitted!!! I am praying for a quick recovery! The good thing is that she should be all better and feeling great for the trip!!!!