*Hope for Addy Grace*

So I’m going to go ahead and apologize in advance for this EXTREMELY long post but I wanted to update you all with all the details from our trip to Madison! As you know we flew through Angel Flight with a WONDERFUL pilot named Tom Beheler and co-pilot named Jim (not sure of his last name)! These two men were absolutely wonderful and helped to make the flight and trip run so smoothly! We left Roanoke around noon on Thursday with intentions of flying to Indiana to refuel. We ended up having to change plans and stop in Springfield Ohio to refill Addy’s oxygen tank. Once we reached around 7,000 feet Addy’s oxygen would drop (which is COMPLETELY normal) so her doctor’s encouraged us to keep her hooked up to her oxygen tank. At this point James and I started stressing some because we were not use to her numbers dropping like they were. Once we got to Madison and talked to her doctor she told us it was normal and actually if we had checked our pulse our oxygen numbers would have been lower too. In Springfield we encountered our first issue and that was the airport couldn’t refill her tank! Thankfully a nearby Rescue Squad gave us a second oxygen tank which got us to Madison! They told James that we didn’t need to return it which really surprised us and the pilots…great people in Springfield Ohio!! Our flight from Ohio to Madison was great until Addy’s DVD player died. Once we couldn’t play Cinderella anymore she was ready to get out of her carseat and wanted the BiPap off. We ended up holding her the rest of the flight which seemed to calm her down. From Springfield Ohio we flew into Madison and arrived there around 5:00 pm (6:00 here in Roanoke). To our amazement the rental car company had actually driven our car out to the plane so we didn’t have to transport all of Addy’s equipment from the plan, into the private pilot area and then out to the car; may God truly bless them because we had A LOT of stuff!! Once we left the airport off to the Hotel we went to check in. Later we met our good friends Steve, Katy and Avery Pitzen (who we met at the SMA conference last year) for dinner. We drove about 45 minutes to meet them because they live about an hour and a half away from Madison. It was so great to see them again and just talk. We love talking to all of you about Addy and SMA but it’s definitely nice to talk to families who are dealing with the same issues we are! They brought Addy the cutest flower headband and also gave us lots of ideas for things to try with Addy! These guys are truly amazing and we appreciate ALL that they have done for us over the past year (including the many late night phone calls and the 45 minute drive to meet us)!! THANK YOU PITZEN FAMILY!!! Thursday night was a complete nightmare once we got back to the hotel. All three of us were beyond tired and all we wanted to do was go to bed but of course Addy’s feeding pump stopped working so we had to get up every 4 hours and feed her through the night! Oh what fun that was! We also were concerned with the weather conditions they were calling for in Madison Friday morning/afternoon and we worried about having to stay another night. Obviously that didn’t happen thank goodness!! Friday morning Addy had her appointment with Dr. Schroth and her team. Her appointment was at 9:00 and we ended up staying there until 1:00. Dr. Schroth was so impressed with Addy and how well she looked and how well she had been the past year. She was beyond impressed, pleased and shocked to know that she had not been hospitalized at all in the past year. She did not change anything about Addy’s protocol and said she didn’t need to see her for another year. Addy did really good when Dr. Schroth was in the room (especially since she hadn’t seen her in over a year and when she did see her she was only 6 months old). When it came time to meet with the Physical Therapist Addy was ready for a nap so we did more talking then anything because every time the PT touched her or I laid her down she cried. The PT was concerned with how tight her ankle cords were and showed us some massages and we can do at home to help work on that. She really wants Addy back in her stander so we are hoping to work on the tightness so she can get back in it. Right now it’s very painful for Addy to get in her stander because of how tight her ankle’s are. She wants Addy to get new AFO’s. She does not like the style that Addy has right now because it’s too hard to get her foot in it (I totally agree). She said she would love to talk to our therapists at home to give her some ideas and we are all for that. After the PT session we met with the Nutrionalist and the first thing she said was “wow she’s orange!” We have noticed an orange tint to Addy’s skin and when we called her 2 weeks ago she didn’t really believe us so to hear her agree with us was pretty funny! We heard from Steve and Katy that Avery had the same problem and the belief behind it is she is having trouble breaking down the Beta Creatine (she gets a lot of orange vegetables so we are going to try adding green beans back into her diet). Other then that she was not concerned with her weight and told us to add more Apple Juice to her diet because she feels she needs more calories due to the movement she can do. She seems to be burning a lot! After we met with the Nutrionalist the hospital did some blood work and we left. Blood work actually went well because they used a numbing cream to help reduce any pain and it worked!! Dr. Schroth wrote us a prescription for the cream so we’ll have it at home to apply before the next set of blood work…woo hoo!! The flight back home was long and very tiring. There were storms all around us so we had to make different detours to stay away from them. Our first stop was in Decatur IL. We stopped there long enough to refuel and to figure out the next plan. The pilots decided we would shoot for Lexington KY because it seemed pretty clear there. It was absolutely beautiful flying into Lexington. James was amazed at all the beautiful farms and barns! He looked like a little boy standing into front of a toy store staring in the window. The barns were HUGE and put our house to shame…haha! The private pilot area was really nice and James enjoyed talking to the workers (he is such a horse guy). We actually learned that the horse that won the Kentucky Derby and the Preakness lives 20 minutes from the airport. The people who own the horse live out west and only come in about once a year, to yes, their farm in Lexington! The guy told James they just brought a new jet that cost around $52 million! Can you even imagine having that much money to just blow on an airplane?? I’d like to call them up and tell them to donate some of their money to SMA!!!! We came very close to staying in Kentucky overnight because there were some very bad thunderstorms over West Virginia. After looking at the weather forecast the pilots decided it was best to leave tonight because there were some major storms heading towards Lexington. We ended up flying north, around West Virginia and then down into Roanoke. It was pretty neat seeing all the coal mines lit up at night! Addy did absolutely amazing yesterday. She slept during each flight and while we were at the different airports she was all smiles! I kept thanking God for her mood because the last time we flew to Madison she cried the entire way home! James and I were so relieved to finally get home last night! We ended up landing around 11:30, unloaded the plane, loaded up the car and went home. James mom had met us at the airport with our car so after dropping her off, home we went and were asleep by 1 am! The entire Angel Flight experience turned out great. James and I really enjoyed it due to the wonderful pilots. We actually wore headphones which allowed us to communicate back and forth with the pilots along with listening to them talk to air traffic control. That was really neat!! Flying commercial flight will never be the same after hearing all of the communications back and forth! It truly amazes me the responsibility a pilot has and what their job involves!! Thank you for all of your prayers and support. These past two days were crazy and we couldn’t have gotten through it without your love, support and prayers. God has truly been answering our prayers this past year and we are just so grateful for a great doctor’s appointment (this truly is her most important doctor’s visit we have)! Hope you enjoy all the pictures of Addy smile...it is truly the best thing in the world!!! I’ve posted a *few* pictures on the blog but there’s a bunch and it was taking forever to upload so go check them out at Snapfish (the link is below)!

http://www2.snapfish.com/snapfish/thumbnailshare/AlbumID=4210765009/a=78946560_78946560/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/