Thursday, May 24, 2012
Agf chick fila spirit night
Come out to the valley view chick fil a for the Addy Grace Foundation Spirit Night! It's from 4-8!
Thursday, April 26, 2012
Home and Pancake Breakfast Fundraiser
Addy is home and doing good! She was discharged from the hospital Tuesday April 24 and is SO happy to be home after a one month stay between the PICU's of Arnold Palmer Children's hospital and Carilion Clinic Children's Hospital. Thank you so much for all your prayers and support!! I hope to do a update on her stay soon!
This Saturday the Addy Grace Foundation is having another Applebee's Pancake fundraiser!! It is from 8am-10am at the Valley View Applebee's location and it is only $5 a person (all you can eat)! We would LOVE to see you there.
This Saturday the Addy Grace Foundation is having another Applebee's Pancake fundraiser!! It is from 8am-10am at the Valley View Applebee's location and it is only $5 a person (all you can eat)! We would LOVE to see you there.
Friday, April 13, 2012
Carilion Clinic Children's Hospital
Saturday March 31 began our new adventure home at Carilion Clinic Children's Hospital aka Roanoke Memorial. Everyone has welcomed us with open arms and ready to get Miss Addy better! Tuesday (April 3rd) Addy was successfully extubated. A few hours later the atelectasis settled back in and she destated fast and low! I dont' remember the extact number but I know it was in the 30's and she was definitely blue. It's NEVER easy to see my sweet girl turn blue but I'm so thankful for quick acting nurses and RT's who don't hesitate and know extactly what to do. Once we got her stable we decided she wasn't ready for her nasal mask and needed the pressures from a full face mask. The last 10 days have been a roller coaster ride, some days good, some not so much; some mornings not so good with great evenings! One thing for sure she has had excellent nights! Tuesday night after talking with Dr. Schroth we decided to stop doing nasal mask vs full face mask trials. She said it was not helping Addy and to give her a 24-48 hour break and only keep her full face mask. She said she wanted us to get her BiPap settings back to "normal" and on room air, requiring NO oxygen. She has handled the lower settings great and we can tell she is much calmer and happier. We are still working to get her back on room air but she is close! Last night (Thursday) she was on room air basically all night, today she's needed about 25-30% (room air is considered 21%). We know that it is going to take Addy a while to get back to her base line and we are totally ok with that! She was int he hospital for a total of 21 days last year. This year she is a year older but also a year weaker so we know it's going to take longer. We are not pushing her or setting high expectations our motto is baby steps and that's all we are hoping and praying for. Please continue to keep Addy in your prayers.
James bought three balloons while we were at Arnold Palmer that he couldn't wait to show Addy once we were home. They are HUGE!!!
for the past 2 weeks we have watched A LOT of Cinderella and Tangled
Easter basket from Auntie Stine and Uncle Dock
Easter basket from the Creasy's! Thank you Heather, James, Peyton and Nono
someone was very excited about being able to lay in the bed with Addy
Addy's track record isn't too great when it comes to being in the hospital on Aubrey's birthday! It's a good thing Aubrey loves Addy so much and is so forgiving! Addy is SO lucky to have such a sweet friend in her life. She tells Lindsay all the time how she misses Addy! ahhh tear jerker!!
look what the Easter bunny brought me!!
Easter basket from Grammy and Poppa
Even Great Grandma Mary brought me a present. This chicken is sooo funny! It dances, sings and lays eggs. The entire PICU staff (including all our visitors) have LOVED it!!
Thursday, April 12, 2012
Arnold Palmer Children's hospital
Tuesday:
Tuesday morning when Addy woke up we knew something wasn't right. Her stats were much lower and she was starting to need oxygen to stay above 92. After an hour or two of trying different things I told James we needed to take her to the emergency room to have an x-ray done of her chest to make sure everything was ok. Once we arrived at Arnold Palmer Children's hospital they took her right back (because we had called Dr. Schroth and she had called to give them a heads up). After an x-ray that showed pseudomonas (what she had last year) we knew we were in trouble. They admitted her to the PICU and then we started the process of getting her transferred back home. By the time we got her a room it was the evening and we immediately started chest pt every 2 hours to help get her lungs clear. We were hoping maybe just an over night stay would do the trick and she would get to fulfill her wish Wednesday afternoon. We soon realized that this wish was not going to happen and our Disney trip was cancelled. As Tuesday ended and Wednesday began we continued her respiratory treatments every 2 hours hoping to at least avoid intubation.
Wednesday
Wednesday afternoon Addy had a very special visited! A friend of mine had reached out to her friends on facebook to her friends to see see if anybody had any connections with Disney. Someone answered back and they were able to set up a visit from Cinderella. When I saw Cinderella for the first time in the PICU I became extremely overwhelmed (in a good way) and bascially lost it! At the time it was just my mom, Addy and I in the room (Tracy and Jeramie had gone to Universal Studios for the day and James was heading to the car shop to see about our van). I immediately told my mom to call James and he came back with plenty of time to hang out with Cinderella! Cinderella stayed for a few hours. At this point Addy was very tired and kept drifting off the sleep while Cinderella talked, read and sang to her. Cinderella felt it was very important for Princess Addy to get her beauty rest for the ball so she would go visit with another little girl and then come back. Total she spent about 3 hours at the PICU that day! Addy's respiratory therapist that day was a true blessing. As soon as Cinderella arrived she grabbed my camera and took over 100 pictures! The last time Cinderella came in to visit Princess Addy was wide awake and pleasantly shocked to see Cinderella was still there. They spent about 30 minutes talking back and forth about Lucifer, Jack Jack, Gus, Prince Charming and the ball! Seeing my princess meet Cinderella is something I will NEVER forget and I'm so thankful for my friend Sandy, Disney and Cinderella! As the day went on Addy started to get really tired and we knew her BiPap machine wasn't going to be enough. We met with the Dr in Orlando and knew to get Addy safely to Roanoke or Wisconsin our best bet was going to be to intubate her (especially since she was tiring out). James and I made the decision Wednesday night if we had to intubate we would transfer Addy to Dr. Schroth in WI and not home.
Thursday
Thursday morning things had not gotten any better for Addy so we decided to go ahead and have her intubated which meant we could fly her to Wisconsin safely to see her SMA doctor, Dr. Schroth. After they intubated Addy the Dr went ahead and put in a Central Line and Arterial line...now she was ready to leave! A few hours after intubation we soon realized James and I were going to have to put our boxing gloves on and prepare to fight for our sweet girl. After intubation the hospital refused to continue all of Addy's respiratory treatments (even after talking to Dr. Schorth). They felt it was too dangerous to use the "cough assist" machine on a patient who was intubated. James and I both knew and expressed how dangerous it was if they DIDN'T use it but it didn't matter, they would not listen. James even asked if he could cough Addy instead of them and they told him if he touched the cough assist (keep in mind it's our machine) they would have him taken out in hand cuffs. They actually moved the cough assist away from Addy and by the door so they would know if we had touched it. After talking to Dr. Schroth about it she said there was nothing we could do and hopefully it wouldn't get too bad in 24 hours. Thursday Addy had two visitors from the Orlando area. They were friends of a guy named Sam who went to school with James and wanted to bring Addy some goodies from Disney. They work at Disney and were able to get autographs from all the Princess in a princess story book and even Mickey and his friends! Thursday evening Tracy, my mom, Jeramie and I went back to Give kids the world to pack up our villa and get everything ready for our trip to Wisconsin (so we thought.......)
Friday
Friday morning we woke up ready to get out of Oralndo and head to WI to see Dr. Schroth! During rounds we soon found out that our trip was about to change because Anthem had denied Addy access into WI hospitals. I still do not understand how insurance companies can deny someone access to see THEIR doctor! In my opinion that should be against the law!!! Anyway we immediately started to process to get her home. Back in Roanoke Christina and Lindsay had posted on facebook that Friday was going to be "paint the town pink" and every one should wear pink, post their picture to facebook so Addy could see. The turnout was HUGE people from all over the country were wearing pink for Addy and because of it she even got a special article in the Vinton Messenger (www.ourvalley.org) The transport team was suppose to be to the hospital by 6 so we waited around. Around noon we found out the plane was being delayed and the transport team wouldn't be to the hospital until 7. My mom, Tracy and Jeramie left Orlando around 6 and a little later we found out the plane had been delayed AGAIN and they wouldn't get to us until after 8. We were SOOOO ready to get out of that place that another delay may have turned us crazy!! By 9:00pm Addy was loaded on the stretcher and heading out the doors to the ambulance. As soon as her little body left the hospital her heart rate and respiratory rate lowered and we knew she was so happy to be out of that place! Because Addy was intubated we had to get a bigger jet which meant I got to fly back with James and Addy...yay! James rode in the back on the ambulance with the transport team (a nurse and respiratory therapist, RT) and one of the EMT's while I rode in the front with the driver. The ride was about 15 minutes and the entire time I was a nervous wreck! I knew she was in great hands but I was so nervous about the flight since she was intubated and the risk of the tube shifting, falling out, etc, etc. They should have given me some of Addy's meds to help relax momma (haha)! Once we arrived to the airport we met the two pilots who were fantastic! One said he had flown to Roanoke a ton because his in laws lived there (a big relief for me as I had heard Roanoke was a very difficult airport to land in) and the other said he went to Liberty...small world! The nurse and RT were fantastic and helped ease my fears. We were in the air by 10:00 and during the entire flight Addy did perfect. We spent a lot of time talking to the transport team about Addy, SMA and all the different places they have been to pick up patients. The two hour flight went fast and before we knew it we were landing in Roanoke at 12am. My dad and Smokey met us at the airport to pick me up and take me to the hospital (I couldn't ride in the ambulance to RMH...only one parent). Christina was waiting in the waiting room for us too so I ran in gave her a big hug and then headed back to the PICU to let everyone know Addy was on the way. It was a pretty dead night so they were all sitting around waiting for us. As soon as Addy arrived they got her settled and started chest pt on her. We were so happy to see Mike (Addy's favorite night RT) working and he got right to work coughing her for a good 1.5-2 minutes. I ended up going back to Christina and Dock's for the night to get a little sleep.
Tuesday morning when Addy woke up we knew something wasn't right. Her stats were much lower and she was starting to need oxygen to stay above 92. After an hour or two of trying different things I told James we needed to take her to the emergency room to have an x-ray done of her chest to make sure everything was ok. Once we arrived at Arnold Palmer Children's hospital they took her right back (because we had called Dr. Schroth and she had called to give them a heads up). After an x-ray that showed pseudomonas (what she had last year) we knew we were in trouble. They admitted her to the PICU and then we started the process of getting her transferred back home. By the time we got her a room it was the evening and we immediately started chest pt every 2 hours to help get her lungs clear. We were hoping maybe just an over night stay would do the trick and she would get to fulfill her wish Wednesday afternoon. We soon realized that this wish was not going to happen and our Disney trip was cancelled. As Tuesday ended and Wednesday began we continued her respiratory treatments every 2 hours hoping to at least avoid intubation.
Wednesday
Wednesday afternoon Addy had a very special visited! A friend of mine had reached out to her friends on facebook to her friends to see see if anybody had any connections with Disney. Someone answered back and they were able to set up a visit from Cinderella. When I saw Cinderella for the first time in the PICU I became extremely overwhelmed (in a good way) and bascially lost it! At the time it was just my mom, Addy and I in the room (Tracy and Jeramie had gone to Universal Studios for the day and James was heading to the car shop to see about our van). I immediately told my mom to call James and he came back with plenty of time to hang out with Cinderella! Cinderella stayed for a few hours. At this point Addy was very tired and kept drifting off the sleep while Cinderella talked, read and sang to her. Cinderella felt it was very important for Princess Addy to get her beauty rest for the ball so she would go visit with another little girl and then come back. Total she spent about 3 hours at the PICU that day! Addy's respiratory therapist that day was a true blessing. As soon as Cinderella arrived she grabbed my camera and took over 100 pictures! The last time Cinderella came in to visit Princess Addy was wide awake and pleasantly shocked to see Cinderella was still there. They spent about 30 minutes talking back and forth about Lucifer, Jack Jack, Gus, Prince Charming and the ball! Seeing my princess meet Cinderella is something I will NEVER forget and I'm so thankful for my friend Sandy, Disney and Cinderella! As the day went on Addy started to get really tired and we knew her BiPap machine wasn't going to be enough. We met with the Dr in Orlando and knew to get Addy safely to Roanoke or Wisconsin our best bet was going to be to intubate her (especially since she was tiring out). James and I made the decision Wednesday night if we had to intubate we would transfer Addy to Dr. Schroth in WI and not home.
Thursday
Thursday morning things had not gotten any better for Addy so we decided to go ahead and have her intubated which meant we could fly her to Wisconsin safely to see her SMA doctor, Dr. Schroth. After they intubated Addy the Dr went ahead and put in a Central Line and Arterial line...now she was ready to leave! A few hours after intubation we soon realized James and I were going to have to put our boxing gloves on and prepare to fight for our sweet girl. After intubation the hospital refused to continue all of Addy's respiratory treatments (even after talking to Dr. Schorth). They felt it was too dangerous to use the "cough assist" machine on a patient who was intubated. James and I both knew and expressed how dangerous it was if they DIDN'T use it but it didn't matter, they would not listen. James even asked if he could cough Addy instead of them and they told him if he touched the cough assist (keep in mind it's our machine) they would have him taken out in hand cuffs. They actually moved the cough assist away from Addy and by the door so they would know if we had touched it. After talking to Dr. Schroth about it she said there was nothing we could do and hopefully it wouldn't get too bad in 24 hours. Thursday Addy had two visitors from the Orlando area. They were friends of a guy named Sam who went to school with James and wanted to bring Addy some goodies from Disney. They work at Disney and were able to get autographs from all the Princess in a princess story book and even Mickey and his friends! Thursday evening Tracy, my mom, Jeramie and I went back to Give kids the world to pack up our villa and get everything ready for our trip to Wisconsin (so we thought.......)
Friday morning we woke up ready to get out of Oralndo and head to WI to see Dr. Schroth! During rounds we soon found out that our trip was about to change because Anthem had denied Addy access into WI hospitals. I still do not understand how insurance companies can deny someone access to see THEIR doctor! In my opinion that should be against the law!!! Anyway we immediately started to process to get her home. Back in Roanoke Christina and Lindsay had posted on facebook that Friday was going to be "paint the town pink" and every one should wear pink, post their picture to facebook so Addy could see. The turnout was HUGE people from all over the country were wearing pink for Addy and because of it she even got a special article in the Vinton Messenger (www.ourvalley.org) The transport team was suppose to be to the hospital by 6 so we waited around. Around noon we found out the plane was being delayed and the transport team wouldn't be to the hospital until 7. My mom, Tracy and Jeramie left Orlando around 6 and a little later we found out the plane had been delayed AGAIN and they wouldn't get to us until after 8. We were SOOOO ready to get out of that place that another delay may have turned us crazy!! By 9:00pm Addy was loaded on the stretcher and heading out the doors to the ambulance. As soon as her little body left the hospital her heart rate and respiratory rate lowered and we knew she was so happy to be out of that place! Because Addy was intubated we had to get a bigger jet which meant I got to fly back with James and Addy...yay! James rode in the back on the ambulance with the transport team (a nurse and respiratory therapist, RT) and one of the EMT's while I rode in the front with the driver. The ride was about 15 minutes and the entire time I was a nervous wreck! I knew she was in great hands but I was so nervous about the flight since she was intubated and the risk of the tube shifting, falling out, etc, etc. They should have given me some of Addy's meds to help relax momma (haha)! Once we arrived to the airport we met the two pilots who were fantastic! One said he had flown to Roanoke a ton because his in laws lived there (a big relief for me as I had heard Roanoke was a very difficult airport to land in) and the other said he went to Liberty...small world! The nurse and RT were fantastic and helped ease my fears. We were in the air by 10:00 and during the entire flight Addy did perfect. We spent a lot of time talking to the transport team about Addy, SMA and all the different places they have been to pick up patients. The two hour flight went fast and before we knew it we were landing in Roanoke at 12am. My dad and Smokey met us at the airport to pick me up and take me to the hospital (I couldn't ride in the ambulance to RMH...only one parent). Christina was waiting in the waiting room for us too so I ran in gave her a big hug and then headed back to the PICU to let everyone know Addy was on the way. It was a pretty dead night so they were all sitting around waiting for us. As soon as Addy arrived they got her settled and started chest pt on her. We were so happy to see Mike (Addy's favorite night RT) working and he got right to work coughing her for a good 1.5-2 minutes. I ended up going back to Christina and Dock's for the night to get a little sleep.
ambulance ride
airplane ride...a little blurry
Monday, April 9, 2012
Give kids the world
The resort we stayed at was called "Give Kids the World" and it is a place where kids who are on wish trips can stay. It was such a neat place and I wish we could have spent the entire week there to enjoy it and check out all that it offered!
in front of our villa (I'm hoping Tracy or my mom has a picture of the Villa)
Addy was able to ride the Merry Go Round Monday evening put the pictures are on Tracy's camera. She rode the snail :)
Castle of Miracles
inside the Castle of Miracles...alot of the stars
each child receives a star and the parents write their name on the star. Then you visit the castle of miracles and "give" your star to the fairy who hangs it in the castle during the night. The next day the child receives a letter telling them where to find their star hanging in the castle. Addy did not get to do this since she was in the hospital but my mom, Tracy, Jeramie and I did it for Addy when we went back to GKTW to pack up the villa.
Addy's pillow
inside the castle of dreams the kids can also go to this tree to receive a pillow. I have videos of both the star and pillow but they aren't loading onto the blog. I will keep trying :
the tower that was built to keep adding stars. Addy's star went inside the tower
Addy's room
Addy's HUGE bathroom
Sunday, April 8, 2012
Disney
The past 2 weeks have been a complete blur! This is why I have not had the time, energy or motivation to update the blog. As you know Addy had her Make a Wish trip to Disney and while we were there she became sick and we had to admit her to the hospital. I'm going to attempt to give somewhat of an update on the next few post but for now here are some pictures of Addy in Orlando BEFORE Tuesday! Enjoy!!
Leaving for Disney Saturday morning (March 24)
Hanging out in the back on the van watching LOTS of movies
Sunday morning...heading to Disney World!!!
Our Villa at "Give kids the world"
presents for Addy from GKTW
Mickey Mouse from GKTW
Sunday evening we went to Downtown Disney
Grammy, Mommy, Daddy, Nana, Uncle Jeramie and Addy
watching Peter Pan, Wendy and Tinker Belle (see below)
she LOVED watching Peter, Wendy and Tinker Belle
choosing a Cinderella purse
and of course glass slippers :)
Mr. Potato Head and Addy
playing with Daddy :)
Monday ~ 2 hours at Animal Kingdom
ready to go find Mickey and see some animals!!
Bugs Life 3D show
Safari ride
Addy loved looking at the Alligator's but wanted me to hold her tight so she didn't fall off!
A Giraffe sitting down
Addy loved looking at the giraffe's
and the elephants!
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