Hope for Addy Grace

Disney Bound

2012-01-27T12:47:00.001-05:00

It's official....we are DISNEY BOUND in less then 2 months!!!! This entire process has taken a very long time but 2 weeks ago we received a new case manager which was a true blessing!! Our new case manager, Katie is great and is going out of her way to make Addy's wish happen soon! We will leave Saturday March 24 and be in Disney for a full week!! Katie was able to get it approved for us to drive our van and we found out they are playing for gas and a hotel room for us to stay in on our "driving" days. While in Disney we will be staying at Give Kids the World resort and everything will be paid for including 3 day hopper pass to Disney parks, tickets to Sea World, Universal Studios and Islands of Adventure. Part of her wish is to do the Bibbidi Bobbidi Boutqiue (BBB). BBB books up really fast so when I called the other day to set it up all they had available was evening appointments. They told me as the trip date gets closer to keep calling back to see if people have cancelled. While at Magic Kingdom we will be having lunch with all the Princesses at the Royal Table in Cinderella's Castle! James and I are so excited to finally see this trip happen and we can't wait to tell Addy that we are going (we've decided to wait until it gets a little closer before we tell her we are going...we dont' want her to get too excited and not sleep)!

Bibbidi Bobbidi Boutique

many have asked what this is...it's inside Cinderella's castle and it's a beauty salon that's owned by Cinderell'a Fairy Godmother. The Fairy Godmother's in training transform little girls into beautiful princess! Addy will have the option to choose which Princess she wants to be and I'm excited to see who she is going to pick!

Overnight Hospital Stay 1/2/12-/1/3/12

2012-01-22T10:00:00.001-05:00

This is a very long and wordy post so I apologize in advance! It's really hard to type everything out while attempting to make sense so if it doesn't I'm sorry!!

New Year's Day was a very relaxing day for Addy. She laid around watching lots of movies and trying to catch back up on her sleep from New Year's Eve. It was a pretty normal day with no issues or concerns! She went to bed great and slept really good until around 1:30 when her pulse ox alarm kept going off. Her oxygen (o2) numbers would drop to 92 (92 is when the alarm will sound) but jump right back up to normal readings. Around 4:00am they kept drooping and staying down so we gave her some oxygen to see if that would help. The 3 liters of oxygen we were giving her by 7-7:30 was only keeping her between 92-95 so we knew something wasn't right. We called her pediatrician Dr. Nelson and she said to go ahead and take her to the Emergency Room since she was requiring oxygen (in a perfect world we would have bypassed the ER and gone to her Pulmonology Dr but their office was closed since Monday was considered a Holiday).

James had gotten up that morning and went to work so by the time I did a round of chest pt on Addy while we waited for James to get home to take her to the ER her O2 numbers were back up to normal with out oxygen. We decided to go ahead and take her in so they could do a chest x-ray to rule out everything. Both Dr. Nelson and Dr. Tamez (her pulmo who was actually on called) had called ahead to the ER to let them know we were coming. They took us right back to a room but then we had to wait FOREVER for the doctor to see her. Thank goodness it wasn't a true emergency!!!! During our wait Addy took a nice long nap which was definitely needed! The X-Ray came back normal and since the ER doctor had no clue about Addy or SMA he decided to have the PICU come down to examine her. We decided with the PICU doctor to do a strep test (because she had a weird rash on her chest) and if that came back positive would take her home but if it came back negative Addy would stay the night in the PICU to be monitored in case she had a bad night like before). The strep test came back negative so we headed up to the PICU for a quick over night stay. James and I made it clear we didn't want any IV's or anything since it was only to monitor her for the night. Once she was on the PICU's monitor's we saw that her O2 was registering at 100% which never happens on our home equipment. We hooked her up to her home pulse ox and soon realized thats ours was reading at least 5 digits lower then the hospital machine which isn't good. We started wondering if maybe the night before the low # were the machine and not Addy. We knew we had to get a new machine! She had a great evening in the PICU and enjoyed seeing some of her favorite PICU staff. They gave her some melatonin that night to help her relax and she was sound asleep with in 30 minutes of taking it and didn't wake up until the next morning! The plan for the next day was to wait until her DME could bring a new pulse ox. They brought one up around lunch time but it was no better..reading the same! We had to wait a few more hours so they could go back to their office to get a different model. When they got back that one was reading a little better but it wasn't good enough for James and I! After talking to the PICU doctor we decided we needed a completely different brand so he wrote us a script to order a new one from Addy's 2nd DME office and then it was time to go home. It took us a while to get out of the PICU due to a couple emergencies (other patients) but we finally made it home around 6:30 Tuesday night!

We just found out on Friday that Addy's new Pulse OX machine has been approved by Medicaid and has been ordered! We were so excited and can't wait to receive it!!!

hanging out in the ER

in the PICU

New Year's Eve

2012-01-22T09:35:00.000-05:00

For New Years Eve this year we decided to have our family and closest friends over! Last year we decided with the Sinks that our new years eve tradition would be to do a steamer pot (as that's what we did last year) so this year was going to be no different! Before everyone came over Randy, Lindsay and Aubrey came over so the girls could exchange presents! One of Aubrey's presents was Disney Princess Dress up clothes so the girls (including Lindsay and I) decided we needed to get in our princess attire!

Aubrey posing for the picture while watching Mickey Mouse..haha!

Getting a 2.5 and 3 year old to look at the camera at the same time is IMPOSSIBLE....especially when Mickey Mouse is on!

We also used the Chick-fila bowl game as an excuse to party since UVA was playing! After dinner the guys started watching the game and the girls (plus Mason) headed downstairs for some Just Dance, Michael Jackson Dance and Country Dance Wii fun!! We had a blast (including Mason and Aubrey who had fun dancing as well)! At this point we were trying to get Addy to go to bed but she wasn't having it! She ended up staying up till after 10:30 laying in her bed talking to fish. Funny how we put her to bed first but she was the LAST kid to stay up...stinker!!! We had a house full of people but had a great time! My parents, James parents, Christina, Allison, Dalton (Allison's boyfriend), Jeramie, The Sinks and The Landis all came over to bring in the new year! Our families ended up leaving before midnight but The Garners, Landis and Sinks had our first sleep over in the new house!

I didn't take a lot of pictures so I'm hoping to steal a few from Lindsay when she does her blog update!!

I promise we don't have random car seats in our house...this is from the conversion van!

These were taken New Year's Day! We stayed home, took down the Christmas tree and relaxed! Little did we know the next morning we would be taking Addy to the Hospital for an over night stay (that blog post to follow next).

Christmas Eve and Christmas Day

2011-12-29T08:50:00.000-05:00

We hope you all had a Merry Christmas!! We had a great Christmas but boy was it busy!! Christmas eve afternoon we went to James parents house to exchange presents. Addy got a lot of neat toys (which Tracy refers to as "educational toys" but I think she's going to have a lot of fun playing with them whether it's during school, OT or just because. James desperately wanted a cross bow but that didn't happen! Instead he got lots of tools and a new tool chest to keep them all in! I was so excited to see that I got a Cricut Expression 2...woo hoo!

Aquarium from Uncle Jeramie

she was so impressed with this...little did she know what she would be getting the next day!

After Christmas at Nana and Grandpa Smokey's we headed too James Grandparents church for the usual Kelley Family Dinner. We had a great time eating dinner (and too many yummy desserts) and after presents we went home to prepare for Santa's arrival!

Two bedtime stories...a book about baby Jesus and The night before Christmas (usually Smokey reads this to her but he forgot his book)

Red Velvet cookies for Santa...somebody was VERY excited about Santa coming!

checking out the Christmas tree before bed

silly girl!!

I was really worried that Addy wouldn't sleep good Christmas night but she did GREAT! She slept all through the night and we never heard one peep out of her...THANK GOODNESS!! After we did her morning treatments it was time to open presents. Apparently I was a very good girl this year because their were a lot of presents under the tree with my name on them (James informed me that Addy decided to break her piggy bank this year and spoil mommy)...hmmm! Addy was so excited to see her Belle Princess Doll. This doll is really neat...she talks, sings, reads, to you and has all her friends (Mrs. Tea Pot, Chip, Lumiere, her brush, the rose and a book)! Her big present this year was her own fish tank! She was SO EXCITED to see a purple fish tank with lots of neon "fishies" swimming around. She loves it so much that for 2 days she refused to take a nap...wanted to lay in her bed and watch the "fishies"!

the present she made for James and I during school. She was very excited about it...every time we asked if we could peek she would yell at us! She even made the bag by tearing the paper to make the snowman's eyes, nose and mouth!

LOVE it!!

Her tiny handprint made into 5 snowmen! So cute...she was very proud of her work!

checking out her new Princess doll!

can you tell she loves her fish?

My new lamp that Addy and James made to go on my Cricut table!

Each side has it's own picture!

Once we left the house we headed to James Memaw house. Addy ended up falling asleep (after an unsuccessful nap attempt at the house) so I said in the van with her while she napped. James went in to visit with everyone! After that stop we went to my Grandma's house were we stayed the rest of the day! My Grandma always fixes a yummy Christmas dinner and then we exchange gifts with everyone. This year James and I decided not to go to my parents house in the morning and to just exchange gifts down there. We had a great Christmas but I'm so glad we only have to do that once a year!!!

hanging out at Great Grandma Mary's house

Grandpa Smokey and Nana came by to visit!!

Auntie Stine and Uncle Dock before they left

Grammy and Papa

Uncle Gerald and Aunt Jane

Uncle Gerald, Aunt Jane and Great Grandma

I was TERRIBLE at taking pictures Christmas Eve and Christmas Day but at least we have a few to help remember the day!

Merry Christmas!!!

2011-12-25T07:44:00.001-05:00

We hope you all have a very Merry Christmas!!!

Addy LOVED Santa!!!

amd just for fun...here is her very first picture with Santa!

It's beginning to look a lot like Christmas!

2011-12-24T07:30:00.000-05:00

December is going back so fast! We hope everybody has been enjoying this warm December weather (however I have to say last years snow was much better)! Moving into the house so close to Christmas has been a little crazy. We didn't do as much decorating as I had hoped to but I'm totally ok with it now! This year James and I decided to start a new tradition in the new house! We went to Joe’s Trees in Craig County to cut down our first Christmas tree in the new house! We had the best time going out to find the “perfect” tree and can’t wait to do it again next year! Addy stayed with James parents the night before because we figured it would be too cold to take her. Our date to the Tree Farm is something I’ll never forget!

next year I hope to have a mantel over the fire place!

Lindsay made the adorable wreath..it is so cute and I love it sooo much!!

close up view!

Addy's "Mistletoes"

Thursday, December 22 Tracy and I took Addy to Fantasyland at the Dumas Center! She LOVED watching Santa sing and play the guitar. Everytime he stopped singing to tell a story she would yell out because she wanted him to keep singing. It was so cute! About 40 minutes into the show she fell asleep (wouldn't expect anything less from my girl)! Her pulse ox alarm went off one time during the show and Santa stopped the show to check on our sweet girl!

waiting for Santa...

Holly the Reindeer, Rudolph's sister (notice the Green nose?)

sleepy head!!

Santa and Addy

Fantasyland was so good and I HIGHLY recommend going! It was so cute to see all the kids interact with Santa and his stories are so cute! He told all the kids that the "stuffed animals" on the stage with actually real animals. He said he had to turn them into stuffed animals or they would be walking around the stage and in the audience! So cute!

Minnie Mouse Party!!!

2011-12-23T08:37:00.001-05:00

This year we had Addy’s Birthday party at our new house! She picked Minnie Mouse this year so our house was decked out in a lot of pink, black, white and polka dots!!! About two hours before her party we noticed she had a low grade temp. but 20 min. later she was fine…weird little girl!!!! We decided to go ahead and make it a smaller party with just immediate family so we called everyone else and told them not to come. She had a great time celebrating her 3^rd Birthday party and opening all of her presents!!

waiting for Daddy and Randy to finishing grilling the Hamburgers and Hotdogs!!

I love how she lined all the toys up in a straight line...like mother like daughter!!

Allison and Dalton

silly Auntie's!!

Nap time..Randy, Lindsay and Aubrey ended up staying a few hours after the party just to hang out. We had the best time!

Thank you Gooden Family for my new poncho!!

Two of my favorite Birthday presents...my Abby Cadabby and my Jake and the Neverland Pirate movie (and patch)

Thank you Fitzgerald family!!

Somehow I missed getting pictures with Addy and everybody at her party..boo! Thank you to everyone who helped to make Addy's 3rd Birthday so special! Also, a BIG thank you to everyone who has prayed for our sweet little girl during the past 3 years! It is a true miracle from God that she is still with us and we praise him everyday!!

Birthday Party!

2011-12-21T15:13:00.000-05:00

On Addy's 3rd Birthday we took her to Chuck e Cheese! She had never been there before and we figured on a Wednesday night they wouldn't be too busy! Randy, Lindsay and Aubrey met us there for dinner and games and later James parents, my mom and Allison showed up! Addy LOVED watching the show and even found a favorite game! She also had fun watching Aubrey ride the rides, slide down the slide and play a few games. We had a great time! We could tell from the moment she woke up that she knew it was HER game and she had a smile on her face the entire day!

kisses for the Birthday girl!

singing Happy Birthday

this is so much fun!!

Addy and her new Abby Cadabby doll!!

Happy 3rd Birthday!!!

2011-11-30T07:21:00.000-05:00

My sweet Addy,

You have shown me that life passes so quickly. I don’t want to waste a single moment of this time that God has given me to share with you.You have brought me more joy than I ever dreamed possible.

When you were born, I was so taken by your dark hair and those sparkling blue eyes, I couldn’t bear to look away.

I now find myself having a similar experience. While you have grown from a helpless infant into an ’I can do it’ toddling toddler I have often held my breath, hoping I would know when to hold your hand and when to stand behind you with a little push.

When I look into your eyes, I see possibilities. You truly believe ANYTHING can happen.
And that is magic….
The kind of magic I will save and sprinkle over you each day! You can’t put a price on that kind of faith in the world.

During this last year – you have experienced so much and it has only made you STRONGER! 20 long days in the PICU didn’t set you back, it only made you stronger! 3 long days of intubation didn’t set you back it only made you a fighter! Countless days of Chest PT every 2 hours didn’t make you tired, it only made you healthier!

going home...

I have seen the most significant changes in you – more than walking, more than talking…..What I am witnessing is the growth of your mind and most importantly your heart. You are learning compassion. You are learning to give. You are learning to be a friend, to love, and to be you.

I am so incredibly proud of the little girl you are. From you I have learned patience, I have experienced family, and I have grown. I am a better person for having you in my life.

I have both raged at God and fallen before Him praising and thanking Him for this journey! My love for you has taught me that faith is undefinable. Today I praise God that I am handing you a balloon in celebration today rather than releasing one in remembrance.

Thank you for all the smiles and even some of your tears. Thank you for always loving me and teaching me every day how to be a better person. But most of all thank you for just being YOU!

Happy 3rd Birthday to my little princess!!
I love you as high as the sky, as deep as the sea, to the moon and back...and even still farther!
Love, Mommy and Daddy

2011-11-25T09:06:00.000-05:00

Our new house

Thursday November 10th we closed on the new house! After our final walk through the cleaning began and to our surprise the house was in great condition. Lindsay, my mom and I did all the cleaning while James, Randy and Jeramie started loading the U-Haul with all of our “stuff”! The goal for Thursday was to get the entire house cleaned and to paint Addy’s room. We also decided to put Wainscoting up in Addys room and it turned out GREAT (Thank you Randy)!!!!

Friday was moving day and it was a LONG day! Along with moving our furniture in we had a few deliveries which meant James had to stop every time the delivery truck arrived to show where the furniture was going. Friday night we received a call that Addy had a fever (she had spent Thursday and Friday nights with Tracy). While James, Randy, Lindsay and my mom continued to unpack boxes and arrange Addy’s room off I went to check on our girl. She ended up having a head cold which is definitely a scary thing for her with all the thick secretions but the fever broke Saturday morning (after a quick trip to the doctor) and then we battled the secretions for the next week. She is MUCH better now! We were so thankful for NO hospital stay!!

Saturday Christina came to help finish unpacking the “important” boxes (we still have PLENTY downstairs)! Saturday was also the day we brought Addy home and where she got to see her room for the first time….SHE LOVED IT!!!!

Sunday was more unpacking and finding the right spot for things. We also stopped to have our usual Sunday lunch with my Grandma but this time it was at the new house!

James, Addy and I love the new house! We love having so much space for the dogs to run around, a place for all of Addy’s equipment and room for us to grow! We can’t wait to see all the wonderful adventure we are going to have!! We would like to thank our families and especially Randy and Lindsay for all their help! We could not have done it without you all and we love and appreciate you all so much!!

laundry room

eat in kitchen (we are going to make this the mudroom/laundry room)

downstairs rec room

master bedroom

2011-11-24T21:57:00.000-05:00

I am so thankful for this little girl! She has taught me so many things about life and about myself and I thank God every day for her! We hope your Thanksgiving was extra special and you stuffed youself FULL of turkey!!

Addy and her Cole's Quilt

peek a boo

the back of the quilt (fleece material)

Her quilt is #268

Front of the quilt

Cole's Quilt is a group of ladies who sew quilt squares for children who suffere from SMA. We learned of this great organization right after Addy's diagnosis but never signed up to receive the quilt. About 18 months ago we finally requested Addy's quilt and the long process began. We had to send them information about Addy (things she likes, favorite poems/quotes, bible scriptures) and then the quilt squares were made. The entire process takes anywhere from 12-18 months. We were so excited to receive Addy's quilt and even more to receive it in person! Addy's LOVES her quilt and we are now looking for the perfect spot to put it in the new house (blog and pictures to come soon on the new house...we have been VERY busy)!!

2011-11-01T21:00:00.000-04:00

Last Monday Addy had her second hair cut and this time I decided to have more taken off then "just a trim." After her cut Monica curled it which made it even prettier!! Addy fussed and cried the entire time during her "salon treatment" but after it was over she loved looking at herself in the mirror (she is NOT a fan of people touching/brushing/etc. her hair)!

before

after

she LOVES her new hair cut

Wednesday James and I found out that the sellers wanted to push back the closing date to November 10. We were NOT happy with this requeset but our hands were tied. We were suppose to close today (Nov. 1) but now it will be next Thursday, the 10th. We have asked our realtor to contact their's to see if we can start painting/cleaning next Tuesday. We are hoping they will have all of their stuff out by the weekend so we can begin the move in process.

Saturday Christina, Allison, our mom and myself drove to Greensboro, NC for the annual DTI Dance Competition. We shopped all afternoon/evening and heading over to the Hotel/Convention Center that evening to watch a few dances. Sunday we spent the day at the Convention Center watching all the dancers, including the dancers from the Lifetime show "Dance Mom's". A few weeks ago, Valerie (at FLoyd Ward) received a phone call from DTI stating that the Abby Lee Dance Company (aka the dancers of Dance Mom's) would be attending the competition and they would be filming for the upcoming season of Dance Mom's. It was definitely a neat experience to see all the filming crew (aka the secret service..that is what Christina and I called them..haha), the Dance Moms, the dancers and of course the famous Abby Lee! I never had the opportunity to speak to her but from what everyone else said she was very nice! Her girls and choreography are fantastic and I definitely can see why so many people pay to have their kids dance for Abby Lee!

I can HONESTLY say that I DID NOT take these pictures!! I have copied them from parents off of Facebook because I wasn't going to be a crazy fan and take lots of pictures but I had to post a few so I could prove to you I wasn't lying...yes they were there! Haha!!

Abby Lee Miller (on the end) with some of the "Dance Mom's"

Abby Lee Miller, Dance Mom's and some of the dancers!

Monday James, Addy and I went to my parents house for our traditional Halloween hang out spot! This year Addy was a bubble bee and loved all the attention she got over her wings, antenna and tutu! We had a great time passing out candy and hanging out with Christina and Dock. Randy, Lindsay and Aubrey even showed up for a little while and Aubrey was too cute as a Ladybug! As soon as she saw my mom's decorations she said "this is the best Halloween ever" haha I love that kid! She kept running around saying "Happy Halloween" and loved passing out candy to the trick or treater's!

Allison's pumpkin

not sure why only half the picture is showing :(

knock knock...."trick or treat" haha!

2011-10-25T21:27:00.000-04:00

Things have been very busy in the Garner household since my last blog post! Two weeks ago Tracy, Addy and I drove to Greensboro to pick up the new van! On the way down we stopped in Ridgeway to meet Maddie’s mom, Amanda. We hadn’t seen her since the summer and it was great to chat even it was for only a few minutes! Picking up the van was very emotional on many different levels! James and I are so grateful for Jocelyn’s families and that they thought to contact us about it. It is such a great opportunity but honestly I didn’t even think about how emotional getting this van would be! I wasn’t even thinking that we were purchasing this van from the Lee family who had lost their sweet daughter back in August. It didn’t cross my mind until Jennifer (Jocelyn’s mom started crying) and then I soon realized what was happening and it became a HUGE reality check for me. I never think about the “what if’s” and the fact that I could possible lose my sweet Addy to SMA but that day and the next day I did. I was definitely in a funk and luckily for me I have a WONDERFUL support system of friends and family who helped me through it. I try to always take each day one day at a time and thank God for every day we have with Addy. I never focus on the Devils work and how cruel he is but every now and then when you are down that Devil finds you! We haven’t started using the van yet because it’s too difficult to load Addy in the van with her stroller and equipment while parked on a hill for a driveway! We are waiting to use the new van once we move.

The weekend of October 7-9 James and I went to Williamsburg with Randy and Lindsay to celebrate both of our anniversaries! Friday we met up with my nephew Zac and my older sister Tina to get our Busch Garden’s tickets. Tina was sweet enough to get us B.G. tickets at a much cheaper price! It was great to see Zac again and finally meet up with Tina! After our quick trip to Yorktown we headed back to Williamsburg for dinner at the Green Leaf. Dinner was full of LOTS of laughs which isn’t anything new when the four of us get together! After dinner we headed to Colonial Williamsburg to find a Historic Tavern that Randy wanted to go to. We learned after finding the Tavern that you have to have to get their early if you want to get in! We didn’t get to go but definitely plan to go next time!! Saturday we spent the morning/early afternoon at Busch Garden’s. The park was dead which was great! We decided to leave for lunch (especially after Lindsay and James decided to ride the Rapids and get SOAKED!) After lunch we headed to the outlets for a little shopping and then went back to the park for Howl-O-Scream. Tina and Zac were supposed to meet up with us but Busch Garden’s had reached their maximum capacity and weren’t letting anybody in the park unless they had been there earlier in the day. We didn’t do any of the Haunted Houses (not mine and Lindsay’s cup of tea not to mention we didn’t want to wait in a 2 hour line) so we rode a few Roller Coaster’s and headed back to the Condo. The park was SOOOOO packed that you could barely walk and since we were able to ride so many rides during the day we decided leaving early was the way to go! Sunday we spent a few more hours at the outlets and then headed home! Addy spent the weekend with James parents and definitely didn’t’ want to go home when we picked her up! She loves having sleep over’s at Nana and Grandpa Smokey’s house and staying two nights was even better!!!

Happy 5 years!!!

Silly Lindsay in Colonial Williamsburg!

The following weekend (Oct 14 and 15) was Homecoming for Byrd. Christina and I spent my Birthday going to the Byrd football game to watch Allison cheer (we were hoping to get to watch her boyfriend Dalton play football but he has been injured). We had a great time catching up on our busy lives and I know my mom and dad loved watching Christina do the Alumni cheer with the current cheerleaders (many Christina and Allison got to cheer together). Saturday was Homecoming so after many hours of furniture shopping we met up with the group for pictures at Virginia Western’s Arboretum. Allison and Dalton make the cutest couple seeing them dressed up made it even better!

Friday night at the football game

my sweet Grandma

dance pose!! :)

four beautiful girls!

cuddling with Daddy

Addy LOVES her Auntie's!!!

Next Tuesday (November 1) we sign the papers for the new house. For the past 2 weeks we have been furniture shopping, packing, more shopping and more packing and I’m ready for a break! I guess that break will come when it’s time to start unpacking everything! We are so excited and ready to move. We have spent 5 wonderful years at our home and are sad to leave but looking forward to seeing what God has in store for us at our new home! As James, Addy and I spend our last week here on Salem Turnpike we have been constantly remembering all the memories, good and bad! James proposed to me here, Dock living with us for the first year, bringing our sweet baby girl home to this house, meeting our neighbors Matt, Stephanie and eventually Mason and soon realizing they would become some of our very best friends, TONS of Garner/Sink family nights including lots of Addy and Aubrey play dates and receiving the worst news we would ever receive in our life…Addy’s diagnosis of SMA. Those are just to name of few but the list goes on for miles and miles, Cannady I will NEVER forget the day you slid down the front stairs or all the dinner dates we had with Christina and Dock and the many sleep overs we had with Allison! Thank you ALL for all the great memories!!

2011-10-05T21:11:00.000-04:00

The last few weeks have been super busy for us!! Wednesday James and I found a house that we really liked in Botetourt so we decided to make an offer. Friday our realtor sent the contact off to the listing agent and the waiting peiod started! Friday night James and I went to the Jason Aldean, Chris Young and Thompson Square concert with Christia, Dock, Lindsay and Randy! Each year Jason Aldean does a concert were all the proceeds (including ticket sales) go directly to the Susan B. Komen Foundation and he chose Roanoke! It was an amazing concert and during the show they announced that they had raised over $315,000! Truly amazing!!!

The guys before the concert!

Dock being silly!

The Garner's with the Epperly's :)

The girls

Our favorite Sink family!!

Jason Aldean!!

On Saturday James, Addy and I drove to Greenboro to look at a Handicap Accessible Van! The Lee family from North Carolina contacted James about a month ago askng if we knew anybody that might be interested in buying a van. Their sweet Joclyn gained her Angel wings in August and they were looking to get rid of their van. After talking to James parents we decided this might be a good purchase for us to make! The van is great and we are definitely going to get it! I'm not sure that I'm 100% ready to drive a "BIG" van but it wll be so much easier to transport Addy with a ramp, plus she will be able to ride in her wheelchair which will be so much easier on her! The van has a HUGE TV which Addy LOVES and lots of storage areas which I love! We are hoping to meet back up with the Lee family sometime next week to pick up the van. We are definitely looking foward to seeing them again, they are such a sweet family!

We are going to trade in our van to get me something smaller to drive around time when I don't have Addy. Tracy is going to sell her van too and the new van will stay with Addy whether she is with us or James parents. If you know anybody interested in purchasing a van let me know because I know James parents are looking to sell theirs!

Monday was James 28th Birthday and we celebrated with some of our friends and family at Longhorn Steakhouse. We had a big group of people including James parents, my parents, Christina, Dock, Allison, the Sinks and Landis! We had a geat time and the food was so yummy but we definitely had to wait a long time (I think it was because it new) but we enjoyed it and will be going back! While we were at dinner with shared our exciting news that we in fact had gotten the house we put the offer on and everyone was so excited for us! The house is in Botetourt (in the Greenfield School district) and it has almost 5.5 acres! It is a 4 bedroom/3 bath ranch with basement and we love it! We have so many "projects" already planned and can't wait to move in and get started!

2011-09-02T09:12:00.000-04:00

This past week I started back to the Preschool (officially)..I’ve been there A LOT this summer because I was promoted to lead teacher so I’ve been trying to get the classroom organized! This week consisted of LOTS of training and meeting new staff members! Addy was thrilled to know I was going back to work because they meant more time with Nana! Wednesday morning the lead teachers had CPR/First Aide and when I walked in I thought I was going to die. Lying on the table where 10 Infant practice dolls and they all had what I call “SMA legs”. Now you are probably wondering what “SMA legs” are and if you’re an SMA parent then you know exactly what I’m talking about. If you go back and look at pictures of Addy her legs are turned out like a frog (knees facing outward), because Addy has no muscle tone she can’t hold her legs up (knees facing upward) so they fall out. For some reason that day those 10 practice dolls got to me but thankfully I had my wonderful co-workers and friends there to help me through that short moment. Yikes…it always gets you when you are least expecting it! Now I am officially CPR certified which I’m very grateful for since that is something I’ve wanted to learn since Addy’s diagnosis!

The month of August was SMA Awareness month and so the Addy Grace Foundation decided to raffle off an EasyS wheelchair stroller. This is the same stroller that we have for Addy and the majority of Type 1 families use. It allows kids to lay completely flat which is a necessity!!! SMA families were able to go to our website and donate money. Every dollar got their name in the drawling so the more they donated the better their chances were. Yesterday James, Addy and I did the drawling and we were so excited to find out who won! It was the Grindles who live in Michigan and their son Ben (approx. 18 months old) needed it badly!! They had the Size 1 stroller and it was too small for him…insurance was telling them they would not purchase them another one. This was just another reminder to me that God is always in control and answers prayers! We actually have met the Grindle family and they are wonderful people! When we went to Wisconsin the end of July for Addy’s pulmonology apt. with Dr. Schroth their family was there too. Ben had clinic day the same day as Addy so we met them there but also had dinner with them and a few other families. Congratulations Grindle family!!

Addy choosing the winner

who has #182????

The Grindles!!! Gooo Ben!

Addy and Ben on clinic day in Wisconsin

please pray for this sweet girl named Kendra. We also met her and her family in Wisconsin and she is in the Hospital. She is such an adorable girl and I pray she feels better soon!!

Yesterday (Sept. 1) James and I celebrated our 4 year Wedding Anniversay. It is so hard to believe we have been married 4 years...it seems sooooo much longer then that but I guess that's because in October we will have been together 8 years! Yeah that number seems more like it..haha! We went to dinner at a place in Salem called "Blue Apron" and it was amazing!!! The head chef and owner use to be the head chef at Metro but him and his wife decided to open their own restaurant. We definitely recomment it and will be going back again!!!

Other exciting news is...that we are officially house hunting and serious about it! HAHA! Our house has been on the market since December with no luck. Because James parents own our house they have told us that if we find something we like go for it and they will drop the price of our house (they both know how badly we need to move). We have found a few houses we like and are in the process of working up a contract. Please keep your fingers crossed and pray pray pray!!!

2011-09-02T08:39:00.000-04:00

Last Friday (August 26) we kicked off the weekend going to the William Byrd HS Football game to watch Allison cheer and Dalton (her boyfriend) play football! I can honestly tell you it’s been MANY years since I’ve gone to a High School football game and NOTHING has changed about them. Christina and Dock met up with us there while Randy, Lindsay and Aubrey went with us and the guys had a great time watching the game while Christina, Lindsay, Aubrey and I watched the cheerleaders. Even Aubrey did a little cheering that night….I think her favorite was the Terrier Rumble…haha!

playing with Dock (aka Chicken) and Christina

chicken and chicken..haha!

The next day James, Randy, Lindsay and I took the girls up to the Safari Park in Natural Bridge. We couldn’t have picked a better day to go because Irene was lingering around (without the rain) so it cooled every time off and kept it pretty windy. Addy of course feel asleep as soon as we got there but thankfully only slept through half of the park and Aubrey wasn’t too sure about the animals coming to the car to eat but all 4 adults had a great time!! After we drove through the park we took the girls over to the “Safari Animal” part where they had monkeys, Tigers, Giraffe’s and a few only strange animals. They also had a petting park that had Goats, Chickens and Pigs which the kids liked. The pigs were probably the funniest because every time a huge gust a wind would come through they would start squealing really like! As we were walking about we all got amused by the chicken we saw sitting on top of a goat…hmmm!

checking out the Giraffe's

The tinest bird I've ever seen!!

baby Zebra on the right!!!! It was SOOO cute!

James the Llama...

checking out the goats...

If you look closely this picture makes no sense but we thought it was pretty funny!! We tried to get Aubrey to get in the picture with Lindsay but it wasn't happening so I put Addy up there to see if Aubrey might do it after "Addy did it"...haha!!

HUGE Tortoise

Lindsay had a slight obsession with the picture opts...

We had a great day at the Safari Park!!!

Saturday evening we went to dinner with Christina, Dock, Allison, her boyfriend Dalton, Randy and Lindsay to Icheban! This was Addy’s first experience with Icheban and she had her eyes glued to the chef the entire time! We did that taking her back might not be the best idea or to at least have her BiPap on because the smoke gave her a little trouble. We had a great time at dinner and hope to do it again soon!!

A few random pictures from 2 weeks ago...

Finally wearing her AFO's after not being able to for months!! We had them modified to go on her feet that's why they have so many "extra" straps down the side. They are there to help bring her foot back up to neutal. Please pray that these help!!

She made a Kitty Duke Cheerleading/Ballernia build a bear...that's my girl! haha!!

She picked out the cat (which if you know James and I we are dog lovers not Cat lovers...both extremely allergic), a cheerleading outfit (Duke colors) and pink pointe shoes...what an outfit!

We have had a few cool nights lately so we jump on the opportunity to take Addy for a walk which she LOVES!! We have been taking her to a trail in Salem that is along the Roanoke River that has Ducks and Addy loves to look at the Ducks...especially when Mommy and Daddy quack like a Duck :)

AGF Community Day

2011-08-25T09:53:00.000-04:00

Last Saturday Suntrust and the Vinton Kroger teamed up to do a Community Family Fun Day and chose to sponsor AGF! We were so excited and honored to be chosen and it was a GREAT day! There were so many tents set up including Deb’s Lemonade, Little Caesar’s, Vinton Police, Raffle Tent, games for the kids and even a Dunk Tank!! Randy was the first one in the Dunk Tank and after a while I don’t think he minded sicne it was so HOT! Later in the afternoon it was James turn but he only stayed in a few minutes, after his turn it was time for my nephew Zac! Before the even started we had a balloon release in honor of Skylar Jones who had passed away earlier in the week from SMA. She was 20 months old her mom is one of our dear friends. She was actually the one who designed our AGF logo! It was a special time to remember sweet Skylar and even Addy participated by letting go her pink balloon. Addy was there for about two hours and did great. Thankfully there was a cool breeze blowing so she was able to stay out in the heat for a while. Maddie’s mom and dad, BJ and Amanda even came too! It was a great day!

Christina, Greg and Lindsay

Aubrey and her momma :)

Balloon release for Skylar

Addy releasing her pink balloon for Skylar

Committee member minus Beth

Aubrey dunking her daddy!

Addy dunking her daddy!!

two thumbs up for Deb's Lemonade!!!

Mason :)

Rescue the turtle game...Tracy's favorite!!

Auntie Stine and Addy

getting ready to dunk Addy

Zac and Addy...cousin love!

The drive home and the weekend!

2011-08-07T11:18:00.002-04:00

The trip home:
Wednesday:

Wednesday morning we woke up, packed the car and headed to a really neat toy store my mom had found in the hotel magazine on Madison. Addy loved being pushed through the store checking out all the toys!! The main reason my mom wanted to go was because she saw a peacock stuffed animal in the magazine that she just had to buy for Addy. It turned out to be a puppet but Addy definitely loves it! After the toy store stop we stopped for gas, grabbed lunch and started the drive towards Indiana. Addy was definitely in rare from that did and did not want to have ANYTHING to do with her car seat. She did sooo good driving to Madison that I just knew driving home would be bad and boy was I right! All day Wednesday she refused to nap, fussed, cried and just made the trip miserable for herself, her mommy and both Grandma’s! We had to stop quite a few times but the first stop was definitely my favorite! Once we reached the Wisconsin/Indiana line we stopped at the rest stop and laid a blanket down on the ground for her to lay on. As soon as I picked her up from the car seat she immediately let out a huge sigh and was sassy/sweet Addy again! I had called James before we stopped so he could “talk to her” to see if it would make it better. He called while we were at the rest stop so I put the phone up to her ear and she immediately smiled when she heard her Daddy’s voice! The smile soon turned to a more serious look like “ohh no I’m in trouble” haha! I don’t know what he said to her but she road in her car seat for a few more hours before another melt down! My goal for Wednesday was to make it past Indianapolis before we stopped for dinner and for the night and we barely made it! We stopped for gas west of Indianapolis (ended up staying a while trying to figure out the route for the second day of the trip and so Addy could have another break). After talking to Matt and Stephanie (who drive to Indiana a lot) we decided to drive towards Dayton Oh and stayed in Greenfield, IN for the night (20 miles East from Indianapolis). We stopped for dinner at Bob Evans and then went to the hotel behind the restaurant to stay…of course they didn’t have any rooms for us on the main floor (no elevator) so we loaded Addy back in the car and went down the street to find another hotel. Ohh and before I forget….Wednesday was Tracy aka Nana’s Birthday! So we celebrated Tracy’s Birthday riding in the car ALL DAy, with a fussy toddler…lucky her!!

Thursday:
Thursday we drove the rest of the trip home and made it home around 7:00pm. Thankfully Addy was a true angel that day and did MUCH better then she was on Wednesday. Matt and Stephanie had told us about the new I-35 (going through Ohio) and it was AMAZING!!! We hit sooooo much construction on Wednesday which made the trip even longer so I really didn’t want to have to deal with construction again on Thursday and not only did we not see construction we only saw a few cars on the road. Thursday was definitely a true gift from God!! We all were very tired from the trip and needed an easy last day. Addy took two naps (first one about 35 min, second one about 45 min-1 hr). We stopped for lunch and then we stopped again outside of Charleston, WV for gas and to check out the Cracker Barrel (I wanted to see what kind of WVU clothes they had for Addy). We bought a cute WVU dress for her to wear during football season and then finished the trip in about 2.5 hours. We ALL were sooo happy to be home!!!

Friday:
We spend Friday at home doing laundry and just relaxing! We all needed it!

Saturday:
Addy spent a few hours in the afternoon at her Nana and Grandpa’s house while James and I ran a few errands. We spent the evening at his parents house with Randy, Lindsay, Aubrey, Matt, Stephanie and Mason for game night and dinner! It had been so long since we had seen Mason and he has gotten SO big. Ic ouldn’t get over him walking, dancing and all the babbling he was doing. Kids truly grow up too fast! Aubrey was quite jealous of her Auntie Jenn letting Mason sit on her lap. At one point she told me that Mason needed to get out of my lap…haha I love that girl!!

Sunday:
We were hoping for a low key Sunday but the morning has been quite the opposite! Evidently Addy didn’t get any of her feeds last night so when she woke up this morning she was showing major signs of dehydration. She has been pale and very sleepy so we immediately started her day feeds and have been giving her pedialyte in between her feeds. Hopefully she will start to feel better soon!!

Appointment Day

2011-08-06T04:00:00.001-04:00

Tuesday:

Tuesday afternoon we had Addy’s clinic appointment with Dr. Schroth. We had to be there at 12:00pm to see the Physical Therapist, Karen Patterson. I would say out of the entire appointment this was the worst part for us all. Addy isn’t a fan of PT and cries every week. A big part of her daily routine is stretches to keep her Range of Motion (ROM) where it needs to be. After the hospitalization in April we lost A LOT of Addy’s ROM (basically all of it) due to her not being stretched. When we got home from the Hospital I told James that I felt so guilty not stretching her and that I felt like I had failed her as a mom but he reminded me that our biggest concern those three weeks was keeping her alive not stretching her, which of course he was right! In my head I know that statement is true but my heart breaks knowing I could have done something to help. Addy’s ROM in her feet and ankles are bad. She has AFO’s that she is supposed to wear daily but since her ROM is so bad we can’t get them on her feet. The PT told us we have two options…serial casting (the two words I was dreading to hear) or adapting her AFO’s to make them work to help with her stretching and ROM VERY SLOWLY. She suggested starting with the AFO “remake” and then go to serial casting. We aren’t sure if there is even somebody in our area that does casting and I’m sure you are wondering what it is. Basically her feet/ankles will be put in cast and monitored. Every few days the cast will be removed, checked and then put back on to help bring her ROM back. The PT said there are doing a new method and are seeing better results. They are only being casted for 3 weeks (max) and she told James that she would only want Addy to be casted for 11 days. This is obviously not the path we want to take but will do it if it will help Addy. Please pray that modifying her AFO’s will be all that we need to do and we won’t have to go the route of serial casting. The PT also suggested having a hip x-ray done to check her hip and sockets. After seeing the PT we went to see Dr. Schroth. She was very impressed with Addy and only changed a few numbers on her Trilogy (breathing machine) and upped two of her meds (only because of her weight increase). I love seeing Dr. Schroth because you can tell she really cares; she always spends so much time in the room with us talking about us, Addy, the past year, etc (she even called James Thursday to make sure Addy made it home ok). SMA Doctors are truly something special…they generally care for their kids and their families and they let it show! After seeing Dr. SChroth we went to the lab for blood work. The famous Noni wasn’t there and the lady that took Addy’s blood was unsuccessful! She is becoming harder and harder to get blood from and the poor thing has battle wounds to show for it (picture below). Dr. Schroth wrote a script for us to have blood work done at home and sent to her so hopefully we can find the guy who did it before who was great! After the unsuccessful lab visit Erin, the nutritionist came to visit and she didn’t change and single thing…woo hoo! Once we were finished with clinic day we headed out to the waiting area to leave and met another SMA family, the Grindles. We knew they were going to be there because had already made plans to meet up with them and a few only families for dinner that night! Addy, Tracy and my mom had actually ran into Ben’s older sister Lily before they realized who they were because his adorable 3 year old sister was in the waiting room with her Dog (a balloon) and she was telling them that her dog had SMA like her brother Ben…how stinkin cute! Her parents should be proud…teaching the public about SMA…GOOO LILY!! We said some hello’s, took pictures of Ben and Addy together (as they talked to one another…sooooo dag on cute) and said “see you at dinner” as we all headed to the elevator. We were in a hurry to leave because we had to drop James off at the airport to get back to Roanoke for work on Wednesday. His flight was leaving Madison at 6:30 and we were leaving clinic at 5:15! Naturally as we hit the button for the elevator floor 1 decided they needed to have a fire drill! FUN STUFF!! We didn’t know if we could get on the elevator or not so we waited about 10 min and then somebody finally came and told us it was ok to go. We raced down the elevator, ran to the car and drove like a mad man across town to the airport. Thankfully James made it just in time! Nothing like adding a little adventure and excitement to the LONG day we had just experience! After dropping James off at the airport we headed back across town to meet 3 other families for dinner. We ate a neat restaurant called “Quaker Stake and Lube,” it was an old car garage that had been turned into a restaurant and when we got there we realized quickly it was a very popular place because the place was PACKED!! We had a great time meeting new friends and catching up with old ones (a family we met in Cincy at the SMA conference). My mom actually had dinner with my Great Uncle Alvin and Aunt Gloria who live 20 minutes from Madison. I know she was happy to see them! After dinner we headed back to the hotel and CRASHED!! We were all VERY tired!!

Addy and the cow (tradition)

waiting for Dr. Schroth

somebody loves their Daddy!!

look at her poor arm :(

Dr. Schroth and Addy...we love her!!

Addy and Ben :)

I'm pretty sure they were telling each other how crazy their momma's where (we were snapping pictures like crazy)

Soo cute

Ben, sound asleep at the restaurat

Kendra...she is soo stinkin' cute! She kept saying Hi to everybody

All the families (Bausch, Pooles, Garners and Grindles)

Aubreykept a close eye over over Addy and Ben... they were pretty tired from Clinic Day)

the adorable Kendra!!

Took this for Smokey!

On the way to Madison (Saturday-Monday)

2011-08-05T11:51:00.001-04:00

We made it home safe and sound from our trip to Wisconsin!! Addy had a great appointment with Dr. Schroth but I will go into more detail below! Thank you for all your thoughts and prayers while we were away. Instead of doing a REALLY long blog I’m going to do 2 or 3 mini blogs (on the way to Madison, Madison & appointment, on the way home).

On the way to Madison…
Saturday:

We left Roanoke sometime between 9:45-10am and headed towards Indianapolis IN. We stopped for lunch in Barboursville, WV to give Addy a break from her car seat and she ended up falling asleep while we were out! Attempting to get her back in the car seat without waking her up was a failure but she seemed to be ok and not to grumpy! 25 minutes after arriving in Ohio James was pulled over for speeding…not the way we wanted to start our trip to Wisconsin but at least the ticket wasn’t too expensive!! For some reason our GPS took us off the Interstate and on to an Ohio country road full of hills, and turns which wasn’t too fun for Tracy and I in the back! We stopped one more time and finally made it to Indianapolis between 6:30-7:00. Our hotel was in the perfect location; down the road from a huge mall and LOTS of restaurants and right near the Zoo and the Colts Stadium. James, my mom and I headed down to the restaurants while Tracy stayed back in the room with Addy to put her to bed. We ate at Ram Restaurant & Brewery which was sooo good!!

Charleston, WV

Ohio (flashing lights)

Cincinnati, OH

we got a little excited driving through Cincinnati because we recognized a lot of the buildings. If you remember we went to Cincinnati for the SMA conference right after Addy's diagnosis June 2009.

just hanging out...

taking a VERY short nap...

the navigators...

Sunday:

We spent Sunday in Indianapolis to give us all a break from driving. In the morning we took Addy to the zoo and had a great time. For lunch we ate at the hotel (they had a TGI Friday’s) and then went back to the room to put Addy down for a nap. James, my mom and I went over to the mall to look around (I promise we didn’t force Tracy to stay with Addy each time…she wanted to) and had dinner at P.F. Changs. We went back to the hotel around 7 and decided once we cooled down we would take Addy out for a walk. She decided she was too tired so I gave her a bath and her and I stayed back in the Hotel and James, Tracy and my mom went for a LONG walk! By the time they got back Addy was sound asleep!!

checking out the jelly fish!

she LOVED the sea lions!!

and the penguins!

waving to the polar bear (he was sleeping and when we came up to the window he woke up and looked back at Addy...it was so sweet)

I think she could have stayed and looked at the Walrus all day!

waiting for the Dolphin show to start...checking out the map with Daddy to see where we are going next!

Meerkats

Grammy feeding the Giraffe

Lions napping on the rock

On July 20 a baby Elephant was born weighing 280 lbs. The zoo crew's said that they had brought the baby elephant out on Saturday (which we went to the zoo on Sunday). Wish we could have seen the baby elephant

The Blimp! The Brickyard was going on Sunday while we were there...we tried to get close to the speedway but that definitely didn't happen!!

downtown Indianapolis

JW Marriott (blue building)...our hotel is the tan building in front (Courtyard).

Colts stadium...HUGE

walking towards the Mall (the blue glass bridge is actually a walkway over the road...connected to the mall)

a really neat old Theatre...

FBI mobile command ceter outside of government buildings

Monday:

We left Indianapolis around 10am and headed towards Madison. Our main mission getting there was to avoid Chicago and well…that didn’t happen!! The wonderful GPS lead us right to it but thankfully it was in the middle of the afternoon and not 5:00 traffic (I would HATE to see that place around 5:00 because the middle of the afternoon was TERRIBLE)! Before we got to Chicago we hit a lot of construction going through Indiana! We also got stuck in a really bad wreck but thankfully we hit the detour exit ramp quickly so we didn’t have to sit in traffic too long. The drive to Madison from Indianapolis was interesting. We saw lots of Wind Turbine Farms along I-65, tons of HUGE farms and A LOT of corn fields! We arrived in Madison around 5:30 (central time), unloaded the car and set up Addy’s equipment. We were going to take Addy to the pool but it wasn’t heated so it was too cold for Addy. James, Tracy and my mom went to dinner and I stayed back with Addy to get her ready for bed. Once they got back James and I went down to the pool/hot tub for a little while while Nana and Grammy stayed in the room with Addy.

wind turbine farms...they are all over Indiana and Illinois

driving into Chicago

we drove right past the White Sox field

more shots of Chicago

Willis Tower aka Sears Tower...it was HUGE

taking a break from the long car ride

back stretch!!

I will do another blog post with the rest of the trip! My mom took A LOT more pictures then I did so hopefully some day I can get her camera and get her pictures!

2011-07-29T12:04:00.000-04:00

The last couple of weeks have been crazy busy for us so updating the blog has been near impossible!

On July 16 the big day finally came and Christina and Dock were married!! Their wedding was so beautiful and I can’t wait to see all the pictures from the photographer! Addy was the most beautiful flower girl EVER and the wagon James and Randy built was perfect!! The wagon that Addy was pulled in had a spreader on the bottom that dispensed rose petals as she was pulled. The back of the wagon had a sign that said “Here comes the Bride.” The other flower girl, Kenzie was SO excited to pull Addy and she did a great job! You could tell she was a little nervous Friday night at the rehearsal but once she did it once she was pretty confident! She told Tracy the day of the wedding that if she got tired of pulling Addy around at the reception that she would be there to handle it…haha! I didn’t get any pictures of the wedding so I have been stealing some from friends, family and the photographer (as she post “sneak peek’s” on facebook). The newlyweds are waiting to go on their Honeymoon sometime in September!

Dock and his fellow Marines

Also during the wedding weekend we had two special visitors stay with my mom and dad! Two teenage boys at that!! My nephew Zac and his friend Brandon! For those of you who don’t know I have two older siblings (a brother Jimmy and sister Tina). They are half siblings and growing up we would occasionally see Jimmy but never Tina (to make a LONG story short they were both in the military). It was so nice spending time with them and I’m sure my mom and dad were pretty exhausted after their stay since they aren’t use to having boys in the house!!

Zac, Christina and Bradon

The day of the wedding was also Mason’s 1st Birthday!!! Matt and Stephanie planned his Birthday party for the following day which we were pretty excited about because that meant we got to go! His party was a pool party and crab themed and it turned out GREAT!! We love Mason so much and his first year has gone by SOOO fast! He is such a special little kid and we are so lucky to know him and his family!

We had to leave early for a famiy emergency (everythings fine) so pictures are limited!

Bubba and Aubrey playing!

kisses for the Birthday boy!! Good thing Addy didn't see this, she might have been a little upset with Aubrey..haha!

Last weekend Addy and Aubrey had LOTS of play dates!! I kept Aubrey on Friday for a few hours and we had so much fun playing, dancing and watching Mickey Mouse. Addy loves when Aubrey comes over to play!! Saturday night Randy, Lindsay and Aubrey came over for dinner and we built a tent for the girls to play in. We always love Garner/Sink Family night especially when it’s a low key night just hanging around the house!

Thursday James and I had a short meeting with the school system about the next step for Addy once she turns 3 and ages out of the Early Intervention program. They said that because our house is on the market and we are moving out of the city that they are going to speed up the process to get her IEP done that way it will transfer over to Botetourt or Roanoke County (where ever we end up)! I can’t believe that we are already starting the school process with her. It seems like yesterday she was born and now in 4 months she will be three years old!! After the meeting I took Addy to visit her Great Great Grandma (James Great Grandma). She lives in a nursing home so we never get to take Addy to see her unless it’s at a family gathering but yesterday she was in her wheelchair so they were able to wheel her out to the lobby. Its always so sweet to see Addy with her Great Grandparents, she is so lucky to have so many!!

Great Great Grandma and Addy

Nana, Great Great Grandma and Addy :)

Sunday at my Grandma's house

Tomorrow James, Addy, Tracy, my mom and I are leaving for our yearly trip to Madison, WI. Addy’s appointment is on Tuesday and then james will be flying home to get back to work. We decided since it’s a 15 hour drive to really break up the trip so Sunday we will be sending the day in either Indianapolis or Louisville (depends on which way we decide to go…James call)! We decided we would take her to the zoo and then wake up Monday morning and drive the rest of the way to Madison. While we are there we are going to meet up with different SMA families which we are really excited about. It’s always nice seeing old friends and meeting new ones! Tracy, my mom, Addy and I will leave Madison sometime Wednesday and start the drive home!

Long weekend!!

2011-06-30T11:12:00.000-04:00

Last weekend was VERY busy for us and it took just about all week for us to catch back up and recover (main reason for no blog updates)!! So apolgize for how long this post is!!

Last Friday (June 24) was the 3rd annual Addison Garner golf tournament! This year we had it at Ole Monterey which everybody loved because it was in town and a lot closer! We had a great turnout and the weather was PERFECT!! Addy actually stayed outside from about 11-12:30 because it was cool and there was a breeze which was great because we never get to take her outside for long periods of time due to the heat and humidity. This year was the first time James actually played in the tournament and I know he had a great time. His team consisted of him, Randy, Matt and one of Randy’s friends Brandon….the TROUBLE team..haha! Linday, Aubrey and I drove around for a while and when we made it to them we could tell they were having a lot of fun!! This year I think we may have irritated a few of the golfers with are great driving skills and unknown rules of the game…opps!! We would apologize and keep on driving and usually get a smile out of the ones we didn’t know!

Aubrey saying Hi to Smokey and Donnie Wayne

James teeing off!

Matt, Randy and Brandon

ready to go for a ride!!

"lets go mommy and Jenn, I'm driving"

Grandpa Smokey and Uncle Jeramie's team

At this point we had to stop and wait for golfers to play (which they were taking FOREVER) so Aubrey decided to play with the golf tee's and the BIG golf balls!

After searching for a while we finally found James and the guys!!

After fighting a nap ALL DAY she finally passed out...when we found the guys!!!

She's awake...I think they were watching Cars for the 5th time that day...haha!

Their shirts say "Don;t you wish your Daddy could golf like mine" Pretty much the ONLY picture we got of them together that day!

Tired and ready to go home!

After the tournament James ended up driving down to Orlanda, FL with one of his friends for the SMA conference (I really think they both lost their mind doing that drive)!! They left Roanoke about 7pm Friday night and drove all through the night and arrived in Orlando around 6:30 am, raced to their room to shower and get ready for the conference, talked to a TON of people and then left Orlando around 4:30pm! They plan had been to drive home Sunday but David (the guy driving) felt it might be better to leave Saturday night to beat the traffic! James had a great time down at the conference meeting lots of new families and visiting with ones we already know. He had lunch with the Gooden’s (if you remember we met them back in December when we went to Gatlinburg for the weekend). The main purpose in the trip was to team up with Exomotion who sells the strollers our kids use and advertise the “Addy Tray” that James and David make. It was a huge success!! If your interested in checking out the tray the website is www.theaddytray.com

Now back to us in Roanoke…Saturday morning we had an Addy Grace Foundation fundraiser at the Salem Applebee’s. Each Applebee’s does a Pancake breakfast on Saturday mornings for any group trying to raise money. When we called Applebee’s a while ago to pick a date the only location available was the one in Salem and of course they only had one date! We weren’t crazy about it being the same weekend as the golf tournament but we decided to go ahead and do it and it was a HUGE success!! Applebee’s already said they want us to come back again

she has her ticket and she's ready to eat pancakes!!!

Saturday afternoon was a time for Addy and I to do absolutely NOTHING!! We were both exhausted and used that time to relax a little. Saturday evening was Christina’s Lingerie shower and dinner with the girls and I know she had a great time. We met for dinner at Blue 5 which is always yummy!! While we were there Lindsay, Stephanie and I ran downtowns because the Rhett’s Syndrome Society was having a fundraiser and we wanted to check it out since that’s something we’re going to be doing with AGF in the future. After dinner we went back to Heather’s place for the Lingerie shower and desserts. For some reason I don't have any pictures so I'll have to steal some from Christina and Lindsay!!

Sunday morning when Addy woke up James was there waiting on her. He brought her back a Princess Minnie and it has been by her side since. She was so excited and happy to see her Daddy! We spent the day at my Grandma’s house for more relaxing. Allison friend, Tori came down and I had the best time watching Tori play with Addy. You could just see how happy Addy was by the look on her face and the excitement in her eyes.

Addy and her Princess Minnie from Daddy

playing with Tori

This picture cracks me up!!! This is Addy right before pool therapy...look how long she is!!! I've decided I'm no longer changing her there!!

I thought this was so sweet. Wednesday Addy had OT and she had her holding her baby. Seeing those little hands hold her baby just melted my heart!

Wednesday afternoon the Make of Wish volunteer's came to ask Addy what her wish was. She had just woke up from a 2.5 hour nap so it took her a little while to wake up but she was very excited to see that they had brought her a "Make A Wish" Barbie doll!! I was pretty excited about it because that was her first Barbie!! The two ladies that came were so sweet and it turns out that one of them works with a friend of mine and has been following Addy's story since we received her daignosis. Her husband played in the golf tournament the first year and the past two years they have donated money...such a small world! As you can imagine Addy's wish was to go to Disney World and meet Cinderella! We had to pick three dates that worked great for us and the first we choose was her Birthday. So we are hoping that all will be approved and Addy will get to meet Cinderella on her Birthday in November!! We definitely wanted to go when it wasn't too hot so Addy could enjoy her trip! From what I've heard from other families it can take up to a month to find out all the details so as soon as we hear something I will let you all know!! We are so excited!!!!

Happy Father's Day

2011-06-24T21:28:00.001-04:00

This year we spent Father's Day at James parents house. In the morning James, my dad, Smokey and Jeramie played a round of golf at Ole Monterey and had a great time! That was the first time my dad played golf in a while (due to his ankle replacement surgery) so I know he loved it! After the golf game we had lunch at James parents house and it was sooo yummy! Christina even joinned us which was fun to have her there (my mom and Allison went to the beach with some dance friends)! After lunch we went downstairs to Addy could practice driving the rental power chair. She LOVED driving her chair to James, and her two Grandpa's to give them their gifts!

sorry for the high pitched voice..hahaha!! very annoying I know but Addy loves it!

Lots of BIG news!!

2011-06-16T11:16:00.002-04:00

We hope everybody is having a great summer! Ours has been slammed pack with lots of events and it doesn't look like it's going to slow down anytime soon!! If you remember, back in March we had a Rep from Dynaxox come to discuss the Eye Gaze Communication Device with us for Addy. Addy did great with it for the few minutes she got to play with it but we asked about renting one for her try over a period of time. It finally arrived on Monday and Addy's been playing a little on it and seems to really like it. It gives her the power to choose what she wants to play with which is definitely a good and bad thing...haha! She had speech therapy on Tuesday so we played with the Eye Gaze for a while trying to get Addy to choose things she wanted to play with but she kept picking her movies! Her therapists and I couldn’t' help but laugh because she was determined she was going to watch one of her movies!! We have the Eye Gaze until July 12 so we plan on using it a lot to determine if this is something Addy might be ready for or not!

Also back in March we had a Rep from Permobil come to discuss wheel chair options for Addy. That was set on the back burner for a while when Addy was in the hospital and we were finally able to set up an appointment for him to come back. Tony (the Rep) and Matt (DME Rep) came Tuesday to introduce the C300 to Addy and to see how she would do with it. She did amazingly well and the four of us just sat back with our mouths wide open while she figured out how to drive the chair! For the first time in 2.5 years Addy was able to “come” to me when I called her which was truly a moment I will NEVER forget! She was across the room in her chair and I called for her to come get me and she drove the chair PERFECTLY to me! James, Tony, Matt and I were speechless and I wish so badly that I had taped it. The next time when we tried it again she drove in circles (like all children do learning to drive a chair) but at least we know she can do it. I was SO proud of her and definitely had happy tears that day!!

Monday we got some very exciting news and can’t wait to share it with you all! Addy was approved by the Make A Wish Foundation to receive a wish! We don’t know what the wish will be but are definitely hoping it involves a BIG castle where a certain princess lives where ALL YOUR DREAMS COME TRUE…haha! If you still don’t know what we are hoping it would be it’s to take Addy to Disney. As you all know she truly loves Cinderella and pretty much anything Disney! If we could take her to Disney it would honestly make mine and James dreams come true. The next step for Addy and the Make a Wish experience is waiting for the Volunteer Coordinator to set up a time where Granters can come meet Addy and decide what her wish will be. As soon as we know more we will definitely let you know!

The 3rd annual Addy Grace Golf Tournament is only a week and a half away and we are very excited! There are still a few spots available if you know somebody who would be interested in playing. This year it is in town at Ole Monterey so it’s a lot closer than the lake! If you or somebody else is playing in the golf tournament send James an email at JBG@integratedimaging.com or call him at 540-312-0586!

The Addy Grace Foundation is selling tickets to an Applebee’s Pancake Fundraiser in Salem. We know Salem is out of the way for most people but it’s for a great cause so come on out!!! Tickets are only $5 a person and the date is NEXT Saturday June 25 from 8-10! If you want to support AGF and can’t come that day you can still buy tickets! If you would like to purchase tickets for the Pancake breakfast send me an email at Jennifer@addygracefoundation.com or call me at 540-314-1416 OR you can purchase them the day of at the door!

Only 4 weeks until the BIG Bryan/Epperly wedding and we are SOOO EXCITED!!!

Sweet 16

2011-06-15T09:29:00.000-04:00

Monday June 13 was Allison 16th Birthday and we had a great time celebrating her Birthday at Logans with some of our friends and family! It is so hard for me to believe that Allison is 16 and soon she will be driving by herself! It only seems like yesterday I was turning 16, driving on my own and driving her to mall or where ever she wanted to go (usually just tag along with me where ever I was going)!

Happy 16 Birthday Allison! We hope you had a great day!!

The Birthday Girl!!

Dalton (Allison's boyfriend), Allison and Kayla

Aubrey helping Allison blow out the candles!

The Sinks :)

James gave Allison $16 in pennies....he just loves her so much!!

The *soon-to-be* Epperly's (Dock acting silly as usually)

Dock and Aubrey :)

so sweet!

present time!!!

Addy having fun at the party!!

2011-06-12T18:43:00.000-04:00

So this blog post is VERY late but I stole all the pictures from Lindsay's blog and she takes FOREVER to update her blog (only because she takes lots of pictures of her sweet Aubrey)...love you Lindsay!!!

James and I went to the Zac Brown Band concert the beginning of May with Randy, Lindsay and her parents. We had SUCH a great time even though it was FREEZING!!! We all wore sweatshirts and snuggled up together with blankets...I don't think it has ever been that cold in May! The concert was outside in the Salem Football stadium which was awesome!! If you know where we live then you know we live super close to the Salem Civic Center and Tracy said you could actually hear the music from our house!

Aren't we cute with our matching UVA sweatshirts???

James missed the memo about wearing UVA sweatshirts!!

doesn't everybody use coozies as gloves???

love this girl!!! can you tell it was just a little windy??

Randy didn't realize we WEREN"T taking a serious picture!!!

LOVE Lindsays mom!!!

Lindsay's parents

2011-06-06T09:00:00.001-04:00

This past weekend was Dock's Bachelor party so the boys went White Water Rafting and had a blast!!! That meant it was a mommy and Addy weekend but of course it had to be a very busy weekend because it was the dance recital! This year we had 3 shows and all of my dances were Friday evening so Tracy kept Addy for me (thank God for her!!!).
Saturday Addy and I went to the Matinee show for a bit and then I took her so she could get her VERY FIRST haircut! Christina, Tracy and Darlene (James great aunt) met us there to help out and enjoy one of Addy's first! I wasn't sure how well she was going to do because she isn't a fan of anybody touching her hair but she did FANTASTIC!!! She sat on my lap and looked like such a big girl...she loved looking in the mirror at herself and watching Monica cut her! Basically Monica gave Addy a few layers to help with all the tangles and when it was all said it done it was only about an inch! I don't think my mom was too happy when she heard I was going to cut her hair but once she realized it was only going to be a TRIM she was fine...haha! I swear my kid has the prettiest head of hair and I almost decided not to do it after I saw her sitting on my lap and all that beautiful blond hair flowing down her back. We decided to keep it a secret from James so she could surprise her daddy when he came home and he just loved it! He has been wanting her to get a hair cut for a while and when I say cut I mean inches not ONE inch but he is just going to have to get over that thought...haha!! He kept saying she looked so pretty which of course Addy LOVED!
After the hair cut we went back to the Civic Center to finish watching the Matinee show! Addy aboslutely LOVED laying in her stroller backstage watching the dances (especially her Aunt Allison). Her eyes never left the stage and during the break between the Matinee and Evening show I took her onstage and danced with her which of course she loved...dancing is in her blood! I have never seen her as happy as I did last yesterday when I was dancing with her! After the Matinee show we left and headed home. Both Addy and I were so happy to be home after a long day of events! I knwo she would have loved watching some of the evening show but she was quickly geting to the point of exhuastion! I am offically off for the summer and we have lots of things planned! To name a few...Allison's 16th Birthday, Christina and Dock's Wedding and a BIG trip to Madison WI to see Dr. Schroth!

Addy's AGF shirt and bow (taken Thursday for our AGF Chick-filA fundrasier)

Addy and some of the dancers!

Addy and Cami...two sweet girls!

before....what a mess!!

before

All done...sooo pretty!!

pretty girl!!

All the girls kept commenting on her pointed toes :)

too bad I wasn't looking at the right camera!! haha Tara, Jackson, Addy and myself

Memorial Day Weekend

2011-06-05T09:59:00.000-04:00

Over Memorial Day weekend Addy had a sleep over at Nana and Grandpa Smokey's house! James, Randy, Lindsay and I went to Durham NC to watch the ACC Baseball tournament and we had a great time! Before the games we went to Dukes campus which was absolutely beautiful!! We had a great time and spent lots of money at the Book Store!! We also went shopping in the evening and I got a brand new stand mixer that is Raspberry Ice (aka Pink) It is in support for Breast Cancer and I just LOVE it...I have already made a few things with it!! Smokey and Tracy had a yard sale at their house and the proceeds went to Addy's medical fund...they made over $700!!! Who would have ever thought you'd make that much at a yard sale!! A big thank you to all our friends and family who donated unwanted items to their yard sale!!

Randy says boo Duke and Lindsay yay Duke!!

Cameron Indoors :)

Two Cameron Crazies!!!!

UVA/Tar Heel game....gooo UVA!!!

Championship game...UVA/FSU

Lindsay attempting to ride the bull!!!

2011-05-30T13:29:00.000-04:00

Today Addy is officially 2.5 years old!!!!!! I can't believe that I have a 2.5 year old. Right after we received Addy's diagnosis we were told Addy would not make it to her 2nd Birthday! Clearly this doctor was wrong and God had much bigger plans for our princess, Addy! James and I praise and thank God daily for his many blessing but especially for picking us to be Addy's mommy and daddy! We hope you all have a wonderful Memorial Day with your friends and family. We are so grateful to have so many veterans in our family who we love and appreciate!

movie time with daddy

rocking with mommy

2011-05-09T21:55:00.000-04:00

Friday I got to watch Aubrey and we had a great time!! Addy and Aubrey loved their play date and of course I had a blast playing with my two favorite girls! Aubrey was a very busy girl that day and it amazes me that the girl never took a nap!!

painting a gift for mommy!

working hard!

so pretty :)

Guess who got their fingers and toes painted?? I was painting Addy's and she ran up to me and said "me?" so of course I couldn't say no!! I have to admit I've been doing my best to turn that girl girly for a while..haha!!

I couldn't believe she sat still for both her fingers and toes! She was so cute after I showed her how to blow on her nails to help them dry faster! She was even cuter when she got to show them off to James parents and then Lindsay!

Addy's pretty fingers! What girl doesn't love pink and purple finger nails?

Love the piggies...she would NEVER cheese it up for me like she does for her momma! I guess she was too busy playing!!

Somebody looks sleepy!!

Addy got a microfone for her Birthday from her speech therapist and Aubrey LOVED it! She is definitely a natural at singing and dancing...I posted this video for her momma!

We hope all you mommas had a great Mother's Day! We spent the day at my Grandma's house with my family for a nice lunch. James was hard at work that day working around the house so we didn't take a lot of pictures but at least I got one with my girl!! After all.. she made me a mommy!!

Aunt Allison and Addy

Who doesn't love a lollipop smocked dress???

Somebody decided to wake up at 2:00 am a few nights ago and sing James and I a song. We couldn't help but laugh because it's music to our ears but we definitely would appreciate more singing during the day and less at night! She has gotten SO talkative since we brought her home from the hospital :)

Easter Weekend

2011-04-24T21:36:00.000-04:00

We hope you all had a wonderful Easter weekend! Ours was wonderful especially since we got to bring our little bunny home! Can't think of a better Easter gift other then the obvious Easter gift!! Saturday we spent the day at home relaxing and later that evening James and I went to dinner with Randy, Lindsay and Aubrey while James parents watched Addy! We had dinner at Mac & Bobs which was sooo yummy but they were very busy last night so we were there a while! We finally gave Aubrey her Birthday presents which she seemed to love but of course I forgot to take pictures!! Her Bubba aka James decided she needed a nerf gun...of course don't all 2 year olds need nerf guns? She learned very quickly how to shoot her nerf gun and that it was pretty funny shooting her Uncle Bubba...smart girl!! Sunday we went to James parents house for a yummy lunch and spent the afternoon there while Addy napped! After Addy's long nap we dyed easter eggs and she filled her piggy bank with quarters. Later in the evening my mom and dad came over to see Addy...evidently the Easter Bunny came to their house too for Addy so she had to go through her Easter basket!

Mason and Stephanie came over Saturday so Mason and Addy could have a play date. I can't believe hwo big he has gotte! It blows my mind that he is already 9.5 months old, crawling and ALMOST walking! He is growing up WAY TO FAST!

kisses from a boy...ewwww!!! haha!!

Easter Sunday...soooo cute!!!

Easter Sunday...pretty girl!

you don't even want to know how many "takes" this took...trying to get 2 kids to look at the camera at the same time is near impossible!!

going to Nana and Grandpa's house

Dying Easter Eggs

working hard to make pretty eggs

(we didn't want her pretty white outfit to get dye on it so that's why she's naked)

she was proud of her pretty eggs

All done...Princess Easter Eggs

Filling her piggy bank with quarters!

Everytime she goes to Grandpa Smokey and Nana's house she fills Mater with quarters that her Grandpa saves for her!

Her first Strasburg outfit...soo pretty BUT ready for a nap!

1st PICU visit

2011-04-23T10:01:00.000-04:00

James and I would like to thank EVERYONE who lifted us up with thoughts and prayers while Addy was in the PICU! IT was definitely a roller coaster ride and we couldn't have gotten through it without you all. James, Addy and I have been so lucky for the past 2 years that’s she has never been sick but we knew one day that lucky streak would catch up with us and it did. When we took Addy into the ER on April 3 never in our wildest imagination did we think we’d go through the many scary things Addy faced but through our wonderful God he held our hands and stood by our side and because of him we were able to bring our little Princess home! As soon as we got home yesterday afternoon I took Addy to her room and laid her in her bed…oh how I wish I had brought my camera! As soon as I laid her down the BIGGEST smile came over her face and I heard a sigh. She was so happy to be home…it was such a very sweet moment! All Addy wanted to do yesterday was lay in her bed and watch her movies, she had no desire to leave her bed...haha! Yesterday I read the Easter Story to her from her Bible and she laid their so peacefully and just listened. She loves when James and I read stories to her from the Bible which just melts my heart! James and I would like to thank the PICU Staff so taking such good care of Addy and spoiling her even more! If we ever have to return we know that we can go and feel good about the care that Addy will receive!

I wish James and I could have gotten pictures with ALL the PICU staff that took care of Addy but here are a few we got the last two days we were there!

Mandy (nurse) and Mike (Respiratory Therapist)

Night nurses Melissa, Sharon and Kim

The Easter Bunny visited Addy Friday morning

Tasha (Respiratory Therapists)...Addy LOVED Tasha if you can't tell by the smile

Donna and Ashley (two of Addy's nurses)

Dr. Kayrouz...oh how we wished he did Clinic Hours!! Even Addy loved Dr. Kayrouz which is crazy since our little girl isn't a fan of white coats :)

Day 20

2011-04-22T12:17:00.002-04:00

We're going home!!!!

(enough said right???)

Day 19

2011-04-21T20:13:00.000-04:00

Today has been another great day for Addy! The Trilogy arrived this afternoon and James and I have been fully educated on it and know and the ropes! It is such a cool machine and we are super excited to FINALLY have it!! It is going to be such a life saver for James, Addy and I! Addy had spent the majority of the day off her BiPap. Anytime we went to put her back on it she would throw a major temper tantrum but finally this evening we put her back on it and she's hanging out in her bed watching a movie. After talking to Dr. Kayrouz today he felt like Addy is ready to go home. He said that it's up to James and I when we are ready to take her home and we decided that we could stay in the night to monitor her on the Trilogy, shoot an X-Ray in the morning and hoping if that comes out good go home tomorrow. If not, definitely by Saturday! It has definitely been a LONG 19 days and we couldn't have gotten through it without a GREAT PICU staff (who has helped to spoil Addy) and all your thoughts and prayers! We are hoping that tomorrow is the day we FINALLY get to take our little princess home!!

The Trilogy..woo hoo!!!

Addy, Mandy (PICU nurse) and Mike (night Respiratory Therapist)

hoping to get more pictures tomorrow of the PICU staff and Addy!

Day 18

2011-04-20T18:44:00.001-04:00

So the bad news today is that the Trilogy didn't come! There was a miscommunication between the DME and the Case Worker for the Hospital but we are on for tomorrow at 1:00! Addy had another great day today! This morning they woke up her a littler earlier then she was use to and when I say that I say it with pure sarcasim!! She wasn't quite ready to be off of her mask around 10 so we put her back on her BiPap and let her take a nap until 12 and tried again. After her CPT treatment at 12 we keep her off of her BiPap for 1.5 hours and she did FANTASTIC! We put her back in the wagon and took her down to the Pediatric unit to see the play room where they have a big tree. She loved laying in the wagon under the tree looking at the pretty flowers and leaves. While leaving the Peds unit heading back to the PICU we were busted by Daddy!! He had told Addy's nurse, Mandy last night he wanted her to stay in the PICU and not go to the Peds Unit due to germs (which makes a lot of sense) but she assured me this morning that they don't let the sick kids go to the play room (which is an open area). After we made it back to the PICU we did laps around the PICU for about an hour (I told all the nurses that this was the most exercise I'd gotten in a 2.5 weeks which we all thought was pretty funny but also sad...haha)! Addy took a great nap this afternoon and is now off her BiPap machine again watching Cars. We are hoping to do a few more laps around the PICU later! Addy has been FULL of smiles today which just melts my heart!!

*updated evening ~ Addy spent 2.5 hours off of her BiPap this evening...woo hoo!!

Time to go for a walk...yay!!

Mommy and Addy by the tree

Looking up at the pretty flowers on the tree

peek a boo

watching Cars on my IPad

this smile just melts my heart!!

Cutest PICU Bunny I've ever seen!!

Daddy remembered to bring my Bunny Ears and Aunt Jane brought another pair so she has TWO!!

Day 17 evening

2011-04-19T22:10:00.000-04:00

This evening I went with Christina and Dock to Macys to help them with their registry! We had lots of fun picking out stuff for their home but I think James and his parents had even more fun at the Hospital with Addy! They took her off of her BiPap machine for 2 hours this evening! James finally got to hold her and I could tell by his voice on the phone he was pretty excited! They also took her for a walk in a wagon around the PICU. Addy's nurse (Mandy) told me that Daddy did not break any rules and he said she had to stay in a certain part of the PICU because there were germs...haha! I love that he is sooo over protective of her especially in a hospital and especially when Addy's nurses are not going to let her get anywhere near sick kids! Sooo sweet! When they went to put her back on the BiPap James said she wasn't too happy because she really enjoyed the freedom. When I got back up to the Hopsital Addy immediately heard my voice and of course I saw a big smile....YAY!! James talked to Dr. Schroth this evening (Addy's pulmonologist from WI) and she was pretty impressed that Addy was on room air, her stats were holding strong and she had been on her BiPap for periods of time. She said we are def. heading in the right direction but of couse we needed to continue with chest PT every 4 hours to make sure her lung didn't fill with Atelectasis again. She said that it's something that could definitely happened and wanted to let us know just incase it did. Overall though she was very impressed with our little princess! We are super excited about getting the Trilogy tomorrow. We have been waiting for months for this piece of equipment and it's such a relief to know we finally are getting it for Addy. It's crazy to think that we are this excited over a piece of medical equipment...wow something I thought I'd never say!! HAHA The PICU staff is hoping to send us home Friday or Saturday but that will all be based on how Addy is and what her lung looks like when they shoot another X-Ray.
Please say an extra prayer for a young girl named Chelsea. We met Chelsea's parents after Addy's admittance into the PICU and their story has really touched our heart. Chelsea is a 15 year old girl who definitely needs all of our prayers. She has been in the PICU now for 9 weeks (today) and is finally getting to go home tomorrow. They are trying to get her into a special school and found out today she was denied. They are going to try again in a month but it sounds like something that could really benefit her! Her parents are so sweet and have helped spoil Addy even more. They have been through SO much in such a short amount of time and my heart is pretty heavy for them!

Day 17

2011-04-19T16:59:00.000-04:00

Addy had another great night! James said they did her treatment at 2:30 and then let her sleep until 8:30-9! After her morning treatment we gave her a bath and washed her hair again which she definitely wasn't too crazy about. She spent a total of 1.5 hours off her BiPap and did great!!! After her bath she took a long nap and woke up smiling and ready to watch some of her favorite movies! We got some great news today that her Trilogy is going tobe delievered tomorrow instead of Thursday! Dr. Kayrouz said he would like to monitor Addy on the Trilogy for 48 hours before discharge so we are hoping that means we will be home before Easter but we aren't crossing our fingers! We don't want to push Addy to much and then have to turn around and come back a few days after we are home! We are hoping Addy's going to get another break tonight from her BiPap tonight and continue to increase that time off as the days go on!

2011-04-18T21:26:00.002-04:00

Guess who was off her BiPap for 40 minutes this evening????

Day 16

2011-04-18T16:20:00.000-04:00

Addy has had another great day! She slept until 11:00-11:30 this morning which I'm starting to see a pattern and realize what her teenage years are going to be like...haha! James said she had a pretty good night. Around 2am her O2 stats dropped to the higher 80's so they took her off her breathing machine and her o2 stats went back up to 100%, We are guessing that was her way of telling us she needed and wanted a break from her breathing machine! After a 15 minute break they put her back on her breathing machine and she went right back to sleep! This afternoon one of my Preschool moms stopped by to delievery a very special card! I love it so much and we have it hanging in Addy's room for everyone to enjoy (see picture below)! I told her and Tana (when I talked to her on the phone) that I know I'm where I need to be but I still miss those kids! Addy has had a pretty low key afternoon full of R&R and lots of movie time! We learned this morning that the Trilogy isn't going to be here until Thursday. The hospital staff wants to monitor her on the Trilogy for 48 hours so that basically means we probably wont be going home until the weekend or even beg. of next week! James and I definitely are ready to go home BUT we have no problem staying here longer if that means Addy is getting better. We don't want to take her home and then have to turn around and come back 2 days later because her lungs wasn't better. Addy is definitely behind all the yucky viral crud she had but her lung still has a little crud in it and we want tomake sure it is all gone before we go home!

look closely...the bubble machine is back!!! This kid LOVES to make bubbles and anytime we wipe them off she makes 100 more!!

My sweet card/poster from my Preschool kids! The one to the right is from a younger sibling who wanted to make a flower as well...too sweet!

Day 15

2011-04-17T18:59:00.000-04:00

Addy has had a great day today! She slept in this morning and we finally had to wake her up at 11 to do her chest physical therapy. She spent the entire night on her nasal mask and only dropped her O2 numbers once and that's because she needed nasal suctioning. Christina spent the afternoon with us and we watched part 1 of the last Harry Potter movie while Addy watched Tangled. It was definitely nice to just lay around and watch a movie for a few hours! Since Addy had such a great day we decided to take her off her BiPap for 20 minutes to see how she would do. She did FANTASTIC and her stats never dropped below 96! This evening the Easter Bunny came to visit all the kids on the Peds floor and brought Addy a purple bunny! Addy was pretty excited that the Easter Bunny gave her a purple bunny since purple is her favorite color but she wasn't to thrilled to see a huge bunny in her room! She kept one eye on the bunny and one eye on me to make sure I wasn't going anywhere...haha!

finally holding my sweet girl after being in the bed for 2 weeks!

Day 14

2011-04-16T20:35:00.000-04:00

Addy had another GREAT day!! She was on her nasal mask from about 11:30 to 9 and did amazingly well! She has napped a few times and kept her numbers up. This afternoon Christina and I gave her a bath which she definitely enjoyed! This morning we watched the marathon runners in the pouring down rain...boy weren' they crazy!! This afternoon Matt and Stephanie came up and the boys went out to get us lunch from Fork in the Alley (and Bubblecake). The nurses were very happy that James bought enough for them!! After lunch Christina, Stephanie and I worked on Christina and Dock's save the dates while James and Matt played video games. Addy took a great evening nap and is now watching oen of her many movies. Tomorrow we are hoping for another low key day full of R&R's!!

2011-04-15T21:02:00.000-04:00

A few months back Lindsay bought Addy and Aubrey fish to play with (they look like gigantic gold fish crackers). Aubrey likes to cook with hers and Addy likes to hold hwea. While we've been in the Hospital Addy has LOVED holding her golf "fishies" and everybody has commented about them. James, Randy, Lindsay and I thought it would be cool to make them to give to other SMA kiddos from the Foundation. A few days ago one of Addy's nurses asked where we purchsed the fish because she had a patient who could use them. Randy was here when she asked so he got the great idea to make some for her (and some AGF inspired fishies for Addy). The next night when Randy and Lindsay came to visit he brought the fishies and luckily Mandy was here to give them to her patient. Randy has been busy at work sewing AGF fishies and we can't wait to share them with all the kiddos. We have told the PICU staff to let us know whenever they need more fishies so we can share our fishie love with their new patients. Can you say we are a little obsessed with Nemo???

We are going to have LOTS of colors but here is a photo of Addy's new AGF inspired fishies

Day 13

2011-04-15T12:32:00.001-04:00

Addy had another great night last night! When I got here this morning she was on her nasal mask and loving it! When she's on her nasal mask and awake we get lots of personality and smiles but once we put her full face mask back on her "serious" side comes out because she's ticked! Yesterday evening when Christina and Dock came up she was the old Addy...they were playing peek a boo with her and she kept grinning, she was always waving to everyone yesterday with her little "fishies" in her hand! The PICU doctor's feel that the viral crud is behind her and she's feeling much better! Now are plan is to slowly transition her back to her nasal mask while we wait (VERY PATIENTLY..haha) for the Trilogy to arrive. Yesterday she spent a total of 4.5 hours on her nasal mask...today we are shooting for a little more (maybe 6-6.5 hours). The DME that we are using to get Addy's Trilogy is hoping to have it here by Tuesday but if not Tuesday then Thursdays. They are sending a Respironics Rep to teach us how to use the Trilogy and the earliest he can get here is Tuesday! I'm definitely hoping for Tuesday because I know Addy is ready to go home (as are James and I)! I totally forgot to metion on Wednesday that Addy got a full treatment spa bath! She aboslutely loved it, especially (for once in her life) getting her hair washed! I was really nervous about washing her hair because it always stress's her out but she did great...I think she knew she really needed it! She had been bathed a few times already but her hair hadn't been! She was calm and relaxed the entire time and after her bath her nurse, Ashley and Christina french braided her hair. I must say that french braids look sooo cute on Addy and I'm definitely going to have to learn how to do it!

Do you know anybody that would be interested in playing in the 3rd Annual Addy Grace Golf Tourny? The date and place has been set and we are so excited for another great tournament!! This year it is going to be at Ole Monterey Golf Course on Friday June 24! We have loved having it at West Lake the past 2 years but had to switch places this year because West Lake closed their Country Club so there was no way to provide lunch plus Ole Monterey is a lot closer!! If you know somebody interested in playing this year give James a call at (540)312-0586 or send him an email at JBG@integratedimaging.com. The Addy Grace Golf Tournament was set up to help pay for Addy's medical bills so it in no way benefits the Addy Grace Foundation!

finally getting her hair washed after 1.5 weeks...it was DEFINITELY needed!!

look at that long and beautiful hair!! And just think Daddy wants to cut it...NO WAY!!! ignore the pink air brush over her..haha!

French Braids :)

peek a boo!!!

Addy Grace Foundation Hair Bow

Day 12

2011-04-14T13:42:00.000-04:00

Addy had another great night last night! She has finally learned to quickly fall back asleep as soon as the RT's are finished doing CPT on her! This morning Tasha (her RT yesterday and today) came in and did CPT on her first thing and switched her over to her nasal mask. Addy did great on her nasal mask and wore it for 2 hours. We are then put her back on her facial mask and we're planning on switching her back to her nasal mask again for her next treatment at 2. We want her to get use to her nasal mask since that is what she'll use when we go home but are doing it in baby steps! No word yet on when our Trilogy will arrive but we are hoping for Friday so she has the weekend to transition to her machine! Many of you are asking when we get to go home and we still aren't sure on that! We want her to be 100% better before we make the move out of the PICU and home because we don't want to have to turn around 2 days later and come back! She will finish her 7 day Antibiotic today and so our plan is to get the rest of the junk out of her lungs! We know that she's going to be more BiPap dependant for a few weeks post coming home and we are totally fine with that! Thank you for your continued thoughts and prayers. There's no way we could have gotten through the past 12 days without them and we are definitely counting on them for the days, weeks months and years ahead!!

Addy is sending BIG Congrats to her Aunt Allison for making Byrd's Varsity Cheerleading Squad last night!! WAY TO GO!!!

Day 10 and 11

2011-04-13T12:22:00.000-04:00

Addy had a great day on Tuesday. We kept her on the full face mask all day which has definitely seemed to help. She has not been fighting it which is nice too...I think she was so happy to get the vent tube out that she didn't care what kind of mask she had on. Yesterday she had chest physical therapy (CPT) every 2 hours which made the world of a difference. They continued that through the night and her stats are showing us that it's working! I'm so glad that the Hospital staff is listening to us and Dr. Schroth now and doing what her protocals says! James said that Addy had a great night and didn't seem to mind the every 2 hour CPT session.
So far Addy has had a good morning! Dr. Kayrouz and her RT wanted to give her breaks from the full face mask today so we are going to try 2 hours on full face, 2 hours on nasal mask throughout the day. Obviously if we feel she needs the face mask more we will stick to that! She has been on her nasal mask for 1 hour now and seems to be doing good (she's finally taking a nap)! Her RT had to bump a few of her pressures up on her breathing machien just to help her out a little but nothing to crazy! We are definitely taking baby steps forwards and James and I are ok with that...one day at a time, baby steps works for us as long as we are moving fowards and not backwards!
We got some great news this morning and it's that Addy is FINALLY getting the Trilogy!!! We have been fighting for this machine for months now and it looks like it's finally coming! Addy's PICU doctor and Dr. Schroth both felt that Addy needed the Trilogy before going home. Our DME was not offering the machine but a few weeks ago bought out a company who had the Trilogy. They are not getting educated on the machine until May 5 so they said in Addy's best interest it would be best to get the Trilogy from another local DME's office. Many of you are probably wondering what the Trilogy is and it will be her new breathing machine. It can be used as BiPap (which is how we will use it) or as a Ventilator. Because it can be used as a Ventilator is has a battery life which is HUGE..now we dont' have to carry a battery or inventer to run her Bipap. It is much smaller then the BiPap and it has settings on it that her BiPap can not do. The Trilogy is made by the same company that makes her nasal mask so the two work hand in hand together which helps make the "leak" gone! This is such great news for Addy and we are sooo glad to finally be getting one for her!!

End of Day 9

2011-04-12T08:42:00.000-04:00

Addy was successfully Extubated Monday morning around 11am. They kept her on her full face mask for 2 hours and then switched her over to her nasal mask. As the day went on Addy did great. Her numbers were holding steady and she seemed to reall be tolerating being "vent free" I ended up leaving the Hospital for about an hour and a half last night to go to Bonsack's Art Show. When I left her stats were perfect but when I came back not to much! The RT and James had evidently broke up some type of secreations/plug so her oxygen stats were in the high 80's lower 90's (not terrible but not great either). To make a REALLY long story short the RT was concerned that with too much suctioning and using her cough assist machine we were causing "Atelectasis" to return so James got on the phone with Dr. Schroth to see what we needed to do. Dr. Schroth and Dr. Powell talked on the phone and got a plan in place. The staff here wanted Addy's bed elevated but per Dr. Schroth it is now flat (she explained to the DR that SMA kids need their beds to be flat...she can't really explain it, it has just been shown to work), Addy needed to be back on her full face mask with certain BiPap pressures and Chest PT EVERY 2 hours (if needed)...not every 4! Dr. Powell also ordered an X-Ray at about 12pm and after seeing that we saw that yes Atelectasis had returned some BUT it wasn't from what he RT had said (Dr. Schroth said it was because her settings were wrong when she was Extubated and she had been on way to much O2). Evidently everything extubation procedure is completely opposite when dealing with SMA and since the doctor's here so see SMA everyday they didn't know. Dr. Powell came in about 1 am to see Addy to make sure everything was ok (she said she just couldn't sleep until she saw Addy's stats and Addy, for herself). Here's where we are at for now (without talking to Dr. Powell this am). She is going to stay on her full face mask for 24+ hours, Chest PT (CPT) every 2 hours unless Addy's resting and then it's at the 4 hour mark, and I guess we will see where we go for there. If she has to be Intubated again James and I will definitely consider transfering her to WI to Dr. Schroth!

Day 9 Morning

2011-04-11T11:45:00.001-04:00

Addy was FINALLY extubated this morning around 1045. Praise God!! James and I waited in the consult room for Addy's nurse (Teresa) to come get us. We sat there for about 10 minutes waiting and when the door opened her nurse had the biggest smile on her face with a thumbs up. She said Addy did great, not too many secreations and went right to her BP. For the next few hours they are going to keep her on a full face mask rather then her nasal mask but hopefully by the evening she'll be back to her normal mask that she loves. I am so glad that the Extubation part is behind us and I only hope and pray that it stays a success and we don't have to Intubate her again. I told James while we were sitting there waiting that I definitely understood what he was feeling when they took me back to the OR for an Emergency C-Section. The wait and unknown is TERRIBLE!! Thank you soooo much for your constant thoughts and prayers so far. Addy is not out of the woods yet but hopefully soon we will get to take our little Princess (and her many new friends and Balloons home)!!

Hanging out Sunday watching a movie

Thank you Aunt Lindsay and Uncle Randy for my awesome new sunglasses!!

Vent Free...woo hoo!!! 4/11/11

Watching Cinderella

End of Day 7 and Start of Day 8

2011-04-10T11:29:00.002-04:00

Addy had a great day Saturday! Her stats were better and while awake she did great on the vent. She has been napping quite and bit but while awake watching lots of movies. I'm afraid she may actually be turning into a Daddy's Girl because during her treatments she needs her Daddy by her side to keep her calm! Anytime she hears my voice or see's me she gets really excited and of course wants mommy to make the vent go away which obviously I can't. It's not that she doesn't want me by her side she just wants mommy to make it all go away! Yesterday was an uneventful day which James, Addy and I deperately needed! We had a few vistor's come up and Matt and Stephanie brought us dinner again (Baked Spaghetti...yum!). Yesterday was Aubrey's Birthday Party so after the party Randy came up to spend a little guy time with James (which he def. needed).

Addy had a GREAT night! She slept all through the night (even during her treatments). The medicine they have been giving her to help relax her at night has definitely been working! After a full night sleep Addy decided she needed to sleep in as well! Dr Kayrouz came in with RT and Addy's nurse to do rounds and she slept right through them. The X-Ray this morning showed that her lungs were clear (the best they have been all week). He is very pleased with where Addy is at and the plan is to extubate tomorrow morning between 8-10 am. This morning a therapy dog came through the PICU to visit all the kids and Addy was so excited to meet her new friend "Jack". Jack is a Golden Retriever who is apart of the Carilion Therapy program. Jack even had his very own Carilion Badge (which I thought was pretty neat)! We weren't sure how Addy was going to be able to see Jack but Addy's nurse (ashley) pulled in a chair so Jack could sit at Addy's bedside. She immediately turned her eyes to Jack and even got to pet him! The lady was telling us that she would be back tomorrow with another dog and said they would stop by! We are hoping for another uneventful day so Addy will be fully rested for her big day tomorrow! Extubation is very scary for SMA kiddos. Dr. Kayrouz said there is a chance that she may not be ready and they will have to intubate her again but we are praying that doesn't happen! Please pray for a smooth transition from vent to BiPap tomorrow! Addy is definitely ready for the vent tube to come out!!

Hanging out with Aunt Allison's Duckie!!

Sunday morning (4/10) sleeping in

Addy's new friend Jack!

Checking him out

Reaching out to pet Jack

Who's more excited about Jack (Addy or Mommy)???

Watching Princess and the Frog

I have missed this smile sooooo much!

Day 6 and beginning of Day 7

2011-04-09T12:25:00.000-04:00

So the past 24 hours have been INSANE for James and I and we honestly couldn't have done it without all your thoughts and prayers! Friday morning I came in to her room and she was doing good. Her X-Ray looked great and her stats were looking pretty good. Around 1030 am her RT started breaking up a mucus plug that was giving Addy a little trouble with stats. Once the plug was broken up her stats would not come back up so the PICU doctor decided it probably best for Addy to be Intubated. This was definitely something James and I were NOT ready for and had a difficult time handling it. After they Intubated Addy she received a PIC Line to help administer her meds. Once all of this was complete X-Ray to take another picture of her lungs and airway to make sure the vent tube and pic line was positioned correctly. X-Ray showed that her lungs were completely clear and the PIC Line needed to be moved a little (ended up going up towards her Brain versus down towards her heart…not that big of a deal though). We were so fortunate to have a close friend of the family Greg Reynolds (Stephanie’s dad) come and spend the afternoon with us to really help us cope and deal with the past week’s events. He is such a great man and we are so lucky to have him apart of our lives. Our evening consisted of lots of close friends and family by our side to help us deal with the mornings events. Randy, Lindsay, Matt, Stephanie, Christina and Dock were a big help. They brought dinner up and we went down to the cafeteria so James and I could get a break. It was so nice to sit with them for a while and just talk normal gossip versus hospital/medical lingo! Sometime in the evening Addy developed a fever and the we had a difficult time breaking it. The highest it got was 102.7 but it’s been hovering around 100-101. They started an Antibiotic last night to see if that would help along with Tylenol and Ibuprofen.

Addy had a great night last night and slept all night which she definitely needed! She has had a good morning. When I got to the hospital this morning she was awake and waiting on me to get here. Once she saw me she got really excited. She really hasn’t tried fighting the vent to much but definitely gets excited and overwhelmed when she see’s people she knows. We reassure her that she’s ok and to calm down and usually she settles back down. This morning her fever has still be hovering around 100-101 so they have been doing a few other test to make sure she hasn’t picked something up while here at the Hospital. They tested her again for RSV and the Flu which both of those came back negative again and just did a Urine Culture to test for a UTI. Each Culture takes about 3 days to get complete results unless of course it’s full blown and then the culture starts showing that earlier. Her PICU doctor is very pleased with where Addy’s at right now and is hoping to remove her from the vent possibly Monday. Her Vent settings are actually lower then what her settings were yesterday on her Full Face Mask (on BIpap) and she’s actually breathing over the Vent which is good too. Extubation is very scary and even more scary to us SMA parents. We are praying that it is successful when the time comes and Addy will be able to go back on her BiPap machine.

Day 5

2011-04-07T22:22:00.000-04:00

I am so sorry I have not updated today! I feel so bad not letting everyone know what's going on with Addy but the last 24 hours have been draining on James and I! We truly appreciate all your thoughts and prayers and could not get through all this without them! I hope you know how much you all mean to us!

Last night between 6-6:30 James, Addy, Lindsay and I were hanging out in the room. I went over to Addy's bed to suction her mouth and started getting "stringy" secreations out of her mouth. James went to go get the Respiratory Therapist and she decided to do a deep suction down Addy's throat. While she started suctioning she started pulling up a decent size muscus plug and decided to go down her nose to see what was down there. Little did we know what was in store for us! This ended up being the biggest 'monster" muscus plug and it caused Addy to destat from the lower 90's to 23! This was definitely the scarest moment for James and I and we felt so helpless because we were standing there watching our little girl go right before our eyes. Nurse Teresa and RT Ginger saved our babies life yesterday evening and they will be our heros forever! As soon as they pulled up the MASSIVE plug her stats quickly returned to the upper 80's then on up to the lower 90's. I have never been so scared in my life and it definitely affected us physical, mentally and emotional! Addy was very tired after this tramatic episode so they gave her some medicine to calm her and she drifted off to sleep!

During the night Addy, James and the RT brought up another decent size plug and after that Addy had a little trouble returning her numbers to "normal" so they decided to try a full face mask on her instead of her normal nasal mask. She did pretty good with the new mask but the RT's today decided they wanted her back on her normal mask so they decided to switch BiPap Machines which has made the world of difference! Her stats have been much better today! This morning James and I had a meeting with Addy's PICU Doctor and Nurse to discuss her plan of care. Addy's nurse today (Mandy) gave her a bath which she REALLY needed! After not having a bath since Friday night she was getting a little stinky but she felt so much better afterwards! Mandy and the RT, Tasha gave Addy a "Princess Bed" today which allowed her to sit up some to help with secreations!

Addy has had a pretty uneventful day full of naping and muscus plug removing! She has been such a trooper through all of this and reminds me daily how strong and tough she truly is! She has had numerous NT suctions (small suction tubing going down the nose and throat to remove muscus plugs) which she has never had done before. She is amazing and I'm so lucky to call her my daughter! We do not know what is in store for Addy and this hospital stay but I only hope and pray that she recovers and we get to take her home soon. I miss snuggling with my princess and I hate more then anything that she is having to go through all of this. I pray that she has a good outcome!

Today's X-Ray 4/7/2011...MUCH better!

Full Face Mask..she definitely wasn't a fan!

Princess Bed!

Mommy and Addy playing in the bed while Auntie Stine plays close by!

Day 4 morning

2011-04-06T11:27:00.000-04:00

Addy is having a pretty good day so far! She is moving A LOT of secreations which is GREAT NEWS but she's having a hard time with it so her numbers drop during therapy sessions. Once therapy is over she brings them back up with a little help from changes to her BiPap settings and then the RT (respiratory therapist) adjust them back to "normal" settings a few minutes later. During the night the RT and James removed a huge mucus plus which was FANTASTIC news!! It was roughy an inch to inch and a half long and about 1/4 of a inch wide! Please continue to pray for Addy and that these muscus plug continue to break up and come out. Please pray that this will be an easier transition for her and that she doesn't struggle too much!

Yesterday's X-Ray 4/5/11

Today's X-Ray (4/6/11)...look at that open spot on the right..woo hoo!!!

Happy 2nd Birthday Aubrey!!

Night Gown from Valerie :)

Daddy bought her ANOTHER stuffed animal after mommy said no more stuff animals!!

Happy 2nd Birthday Aubrey

2011-04-06T00:00:00.001-04:00

Happy 2nd Birthday to one of our favorite little kiddos, Aubrey Lillian! It is so hard to believe that you are finally TWO! I remember when your mommy found out you were a girl, we were so excited to be pregnant with girls who were going to be Best Friends Forever! We hope you have a fantastic second Birthday! We hate that we're going to miss your Birthday but your Auntie Jenn and Uncle Bubba promise to make it up to you!! Your BFF Addy LOVES you and sends extra special XOXO to you and she hopes to have a play date soon!! Uncle Bubba and Auntie Jenn love you sweet girl!

Snuggle time in Gatlinburg

New Years Eve

December playdate!

Gatlinburg again...love these two girls!

UVA Football game

Addy Grace Golf Tourny

Talking on your "pretend" cell phone at Auntie Jenn's Birthday dinner

Rock Star!!!

Love you Bunches :)

Happy 2nd Birthday Aubrey!!!

Day 3 evening...

2011-04-05T19:21:00.000-04:00

Addy has had a great day! She has been moving A LOT of secreations up and out! They have had her on 23% oxygen all day (room air is 21%)! As the evening has approached she's had a lot more secreations coming up which in turn is causing her to get choked a little and her O2 numbers to drop in the lower 90's. While we were "coughing" her earlier her oxygen numbers dropped some but it was due to so many "yucky's" coming up (well...and because she needed to go to the bathroom)! haha! They have sense bumped her O2 back up a little to help her relax a little more while she's fighting all the junk coming up! It's definitely a great thing that we are seeing so many secreatiosn and we are hoping and praying that she continues to move them up and out!! Addy has had a lot of visitors today and has enjoyed seeing them all! She had a special visit from her Pool Physical Therapists, Carol who brought lots of Bunny goodies!! Along with mommy, daddy and the rest of the family her therapists have helped to make Addy so rotten!! Will update tomorrow with more info. Thank you SOOOO much for all your thoughts and prayers...without them Addy wouldn't be doing as good!

Goodies from Mrs. Carol (Pool PT)

Daddy has new friends!!

Bunny from Daddy

Lambie the Ballernia and Princess Balloon from Tammy and Devon :)

Grammy bought the same Balloon so she has TWO!!

Addy's new friends (the yellow bear is from Grandpa Jim)

Day 3 so far...

2011-04-05T11:45:00.001-04:00

Addy had a great night! She had Chest Physical Thearpy (CPT) at 12:30 and again at 3:30 and then fell back asleep until 8:00 this morning! She had another X-Ray this morning but it didn't show any improvement. Addy's pulmonologist and PICU doctor are not too concerned with that only because her O2 and Heart Rate are so much better and she's on less oxygen (only 25%). The results from the culture finally came back negative and they are treating it as Atelectasis. Basically it's muscus plugs in her left lung that can cause it to collapse or turn into pneuomia. We definitely need to get her left lung clear and get the plugs out!!! This morning I FINALLY got my first smile from her and it was great! Please pray that we get her lung cleared out soon and she continues to progress forward and not back!

Sleeping Beauty

Watching Aristocats...sooo happy!

While posting pictures I found a few that I haven't posted from the past 2 weeks so enjoy!

Mason watching Addy drive her power chair

Taking Abby Cadabby for a ride!

Dynavox Eye Gaze System Trial

Learning how to make it work! She figured it out very quick and was in the Lady's private folder within 15 minutes...that's my girl!

All smiles!!

Hot Pink Lip Gloss!! :)

Daddy was NOT happy about this..haha

check out al my teeth!!

Day #2 so far...

2011-04-04T15:52:00.000-04:00

Addy is having a much better afternoon then her morning! I ended up going home last night to get a much needed night of sleep (after being up for 20+ hours) and was awoken by James calling around 7am to say I needed to get back up to the hospital because Addy was having trouble breathing. When I got up to the Hospital the PICU doctor, nurses and RT were in the room and Addy's oxygen numbers were in the middle to high 80's (which was better then when James called). Evidently Addy had "crashed" (oxygen numbers dropped) because they had been messing with her nose (nasal swab or something) and it made her mad. She had a very difficult time regrouping and that's what scared everyone. The Respiratory Therapist decided to take her off her own BiPap machine and put her on theirs which has made the world of difference. She is down to 35% oxygen (which is roughly 4 liters of oxygen) and her Oxygen Stats are ranging from 95-98 which is FANTASTIC compared to yesterday! Heartrate is still down but not as low as it should be and Addy has been more alert! She has been awake more and hollars out if somebody isn't standing beside her when she wakes up. Usually she'll hold our finger and drift right back to sleep but it's the security she needs! Please continue to pray for Addy, she's definitely not out of the woods yet but seems to be a little better!

2011-04-03T10:05:00.000-04:00

Addy has been admitted to the PICU at Roanoke Memorial. Saturday evning her Heart Rate was higher then normal with more secreations but James and I really didn't think much about it because she's been trying to cut a premolar for a while but as the night and early morning went on we soon realized something was going on. Addy's O2 stats kept dropping and she had a low grade temp. James called the doctor on all for Peds Pulmonology and after talking to him for a while he said it probably wouldn't be a bad idea to bring her in to the ER to have the ER doctor's and nurses check her over. We were in the ER from about 4 hours and then they FINALLY moved us up to the PICU. To make a long story short while in the ER they tested her for RSV and the Flu which both came back negative they also shot a chest x-ray which came back fine as well. The ER doctor told us she felt like it was Bronchitis. Once we made it up to the PICU they did their initial examines on her but we kept telling them she was really tired and needed to go to sleep. After the nurse swapped her nose to check for MRSA she destated pretty bad (manily due to her beintg VERY tired and ticked off). It took a long time for her oxygen numbers to come back up (even on oxygen) and now she is FINALLY sleeping). Stats are great especially for being on oxygen but at least she's sleeping! The PICU nurse said she felt like they would be pumping her full of liquids and antibiotics and hopefully she would start to feel better soon. They couldn't get an IV on her because the ER nurses had to prick her so many times so right now we are using her G-Tube as a means for a medicine port. That's all for now but please pray for Addy...she needs all of our prayers!

2011-04-03T06:25:00.001-04:00

addy is being admitted to the PICU doctors believe she has bronchitis please pray for her

2011-03-31T07:00:00.000-04:00

Today is the LAST day to support AGF through Baby Be Blessed Dolls! Don't miss out on your opportunity to win a Gift Certificate for one of these amazing dolls or animals. Addy has two and she LOVES them!!

All you have to do is go to their "Give a Blessing" page and donate any amount to AGF and it puts you in the running for a Gift Certificate!!!

AGF needs you...the only way we can help out other families fighting this terrible disease is by YOUR help!

http://babybeblesseddolls.com/category_11/Give-a-Blessing.htm

GIve a Blessing

2011-03-30T15:24:00.001-04:00

Tomorrow is the LAST day to support the Addy Grace Foundation through Baby Be Blessed "Give a Blessing" It's sooooo easy! All you have to do is go to their website, http://www.babybeblesseddolls.com/, donate ANY amount to the Addy Grace Foundation and it puts you in the running for your own Baby Be Blessed Doll Gift Certificate which means YOU get to design and choose between a Doll or Animal! Perfect for a boy or girl!!

http://babybeblesseddolls.com/category_11/Give-a-Blessing.htm

2011-03-20T21:12:00.001-04:00

Friday March 18 Addy had a checkup appointment with Dr. Crawford at Johns Hopkins in Baltimore, MD. We have been trying to see him since December but after Dr. Crawford canceling once and us a few more times we finally made it up (only 3 months late)! James, Addy, Tracy, my mom and I left Roanoke Thursday afternoon and made it in to Baltimore around 9pm. For the first time after 5 visits we had issues with our hotel but finally got them squared away and Addy to bed between 10-10:30 (I wasn’t a happy camper...definitely shouldn’t have taken so long to get her to bed)! For some reason the rooms were were promised weren’t available and then they didn’t want to bring us a bed for Addy. Needless to say after James talk to the manager we got what we needed!!

Addy sleeping in a "big girl bed"

We spent Friday morning in the hotel and made it to John’s Hopkins around 1:30 for Addy’s appointment at 2. We met with Dr. Crawford for an hour but then had to take an hour break so he could do a conference call with some fellow SMA doctors and researches, which gave us time to grab a late lunch! After lunch we headed back to the Clinic for another hour to hour and a half with Dr. Crawford! Addy did fantastic and he was very pleased with the way she looked. He told James and I we were doing a great job (which is always nice to hear). James really enjoys Addy’s appointment with Dr. Crawford because he always has exciting news to share about SMA research and today was no different. There are a lot of exciting things in store for the SMA community and only time and money will tell what these promising ideas will bring to us all!

After our appointment with Dr. C we headed down to the Harbor to enjoy the WONDERFUL weather! We got stuck in Friday evening traffic which was CRAZY! While trying to get out of the way of a fire truck (on a one way road) we saw an accident happy right in front of us and were very lucky to get around it and not hit ourselves! People are crazy in Baltimore especially down by the Harbor on a Friday night!! We were going to eat dinner at the Cheesecake Factory but James decided to try “Dicks Last Resort” so we could eat outside (the outdoor seating at the Cheesecake Factory was closing early…big disappointment since I love the Cheesecake Factory so much). “Dicks Last Resort” is just like the restaurant at the Beach however it’s not as crazy as it is at Barefoot Landing. We sat outside which Addy loved and had a great dinner with lots of entertainment (thank goodness it was windy so we didn’t have to wear those terrible hats)!!

Saturday morning we were up pretty early and left Baltimore around 10am. On the way home we detoured a bit and went through Harpers Ferry, WV after a few stops so Addy could stretchand take a break from the car seat we made it home around 3pm. Saturday evening we stayed home and Matt, Stephanie and Mason came over! It had been a few weeks since we had seen them because Steph was out of town one weekend and then Mason had a runny nose another! I can’t believe how big he is getting..8 months old! Time Flies!!

hanging out with Daddy at a rest stop on I-81

taking a break from the long car ride!

so happy to be going home!

Sunday was a normal day and we spent the day at my Grandma’s for lunch. James and Addy watched the Duke/Michigan game…GO Blue Devils!! While I helped Allison with some homework!

This week is going to be very busy for Addy! Tuesday is our meeting with the Permobil Rep who is coming to discuss power chair options for Addy. He is supposed to be bringing one for her to try and we are hoping we will get to keep it for a while for her to experiment with! Friday she has her appointment with the Eye Gaze/Dyanvox Rep. The Eye Gaze system is a communication device that uses stares, eye scanning etc. to make the machine operate. VERY COOL STUFF!! We are very excited for the BIG week ahead for Addy!

And before I forget...have you checked out Baby Be Blessed to help support AGF! AGF was chosen as their March "Give a Blessing" receipant.. All you have to do is donate money to AGF (through their website..."chip in") and it puts you in the running for a gift certificate for your little loved one! Boy or Girl...Doll or Animal! They are amazing dolls/animals and it is something your little one will cherish forever!!

*Hope for Addy Grace*