May 9, 2008

Hello Everybody,

The boys were able to play golf today. Soggy but could have been worse. They are all sun burned some worse than others (Uncle Sammy). I will have to post the picture of his feet at some time. It is too funny (the sock line). Grandmother and I got Aunt Glenda to the airport and back before lunch. We decided to just hang out here. It was nice and my nap sure did help.

Dinner was great tonight and once again we enjoyed the fellowship of being with family. It was great seeing everyone and sharing a laugh or two. Granddaddy and Dan were exhausted when we got home so both didn't last long. Dan's hockey team lost the first game of the Conference finals (I sure hope they can pull of an upset on Sunday night). It's great when his teams win! We will probably be going home tomorrow. I haven't watched Days of our Lives in about two and half weeks so I have asked for a day of Days on Sunday. Hopefully Tivo has recorded them all!Speaking of Days reminds me of an Avery story. On Friday the 25th of April just hours before her passing she asked us to change the channel on her television in her room. I told her there was nothing on at this time except for Disney channel which she was watching or Days of our Lives. She quickly responded with "but I love Days of our Lives mommy. . . .I love Days of our Lives!" She kept saying this over and over until I put the television on Days and put the box close to her ear so she could hear that Days was on. She really cracked everybody in the room up with her love of a soap opera. Of course then she preceeded to ask "where are Sami and Lucas?"

Thank you all for checking in on us. Please continue to pray for strength for our entire family. Remember to pray for all of our special friends. Don't forget to love on your children every chance you get. Until Next Time. . . . . . Missing Avery so very much. . . .Gene Ann

May 8, 2008

Hello Everybody,

We did fly home. It was wonderful. . . I'll take turbulance over a bumpy car ride any day. Seriously three and half hours sitting versus 12 hours. The funny thing is we had to ship some items home because we just didn't have the room and we really did not buy anything that much. Grandmother and Great Aunt Glenda (Grandmother's sister) picked us up at the airport. We stopped by for a nice lunch and right after we ordered the tornado sirens started going off. We checked it out and the storm was going in the opposite direction of where we were so we decided to stay and eat.

It was nice visiting with family tonight. Dan, Granddaddy, Sammy and Cousin Mark are playing golf tomorrow. It should be a good day other than being a little soggy. Grandmother and me have to take Glenda to the airport. I will update when we decide that we are heading toward home (we will have to get someone to take us).

Thank you all so much for checking in on us. Please continue to pray for strength for the entire family. Remember to pray for all of our special friends. Don't forget to hug, kiss and tell your children/grandchildren you love them every chance you get. Until Next Time. . . . Missing Avery so much. . . . Gene Ann

May 7, 2008

Hello Everybody,

We finally had a day of pure rest. I did manage to do our laundry but it wasn't that bad even kind of relaxing. I also managed to get Dan to go shoe shopping with me. For those reading this that might not know Dan that well this is a huge accomplishment on my part. Although after getting some shoes that was it no more shopping for him. Good thing it only took me five minutes to find some or I might have been left in the shoe store.

We had dinner with friends last night at a fun sports bar/restaurant. I must say we still have not had a bad meal on this trip. We enjoyed dinner but mostly getting to visit with some great friends. Dan is trying to persuade me to buy a house here and live a few months here and a few months in Alabama. I'm not ready for that right now but boy is he fired up about it. We will just have to see (I'm still not sold). I love our community, neighborhood, church and weather too much.

Today we drove out to Troy to visit with one of Dan's best friends Dale. He has a Del Taco in Troy. We had lunch with him it was great. He had Welcome Dan and Gene Ann flashing on the sign out front of the store. Only Dale would do something like that. It was a nice visit. We headed back toward Southgate in the pouring rain so that Dan could get his stuff together to go play golf. You must know it never rains on the golf course. I like my line better it never rains in the mall!

I am packing so that we can leave early tomorrow. Dan is thinking about us flying home and leaving his car here. He is coming back for the Dream Cruise in about five weeks so that would make things easier for him. I haven't decided if I am coming back or not. I have to check my calendar when I get home and make sure I don't have any other obligations. I just know the flight would be easier on our backs and knees than driving (12 hours). The only thing I know for sure now is we will be back in Alabama sometime tomorrow. Tonight we are having dinner at Dan's sister Donna's house. His sister Tina and her family will join us after Eric's baseball game.

Thank you all for checking in on us. Please continue to pray for strength for all of us. Oh how we both miss our sweet little buddy. Please remember to pray for all of our special friends. Please join us in praying even harder for a cure so that no more children have to endure this terrible disease. Don't forget to hug, kiss and tell your children that you love them. Until Next Time. . . . Missing Avery so very much. . . . . Gene Ann

May 6, 2008

Hello Everybody,

We made it to Michigan late yesterday afternoon. The Rock and Roll Hall of Fame was wonderful! We really enjoyed our time. Dan was a little dissappointed that there was not that much from the 80's (Hairbands). The funny part of the day was when he had to listen "Sweet Home Alabama" I think final count was 6 times (three times in the museum, once in the car on the way to Mexican Gardens, once in Mexican Gardens and once at the party after dinner). I personally think it was a message from above telling him that Alabama is and always will be home but he thinks it was just pure torture. Oh, I did catch him once singing to the song and inserting "Roll Tide Roll" like everyone does at the games (I'm going to pay for this when he reads it but it really happened).

Dinner was nice we had a group of about 22. It was nice to visit and see some friends that we haven't seen in a while. Dan's two sisters and their families were with us. The party in the parking lot afterwards was interesting but we had a good time. We have decided that we will rest all day today. At some point I will do laundry. We have dinner plans tonight with some friends. We are still not sure what day and what route we will be taking home. Our plan is to stop in Jasper and visit with family for a day or two. I will try and keep everyone posted on our plan and travels.

Thank you all for stopping by to check in on us. Please keep the prayers for strength coming our way. Please pray for all of our special friends. Don't forget to hug, kiss and tell your children that you love them. Cherish every minute you have with your children. Until Next Time. . . . Missing Avery. . . . . Gene Ann

May 5, 2008

Hello Everybody,

We are in Cleveland now. Saturday night we made it to Arlington, Virginia. Sunday we toured the Arlington National Cemetery which ended up being a very short tour. Once inside we looked at each other and said "why are we here of all places." Dan enjoyed the changing of the guard ceremony and seeing the Tomb of the Unknown Soldier. It was very moving but not where we wanted to be. After that we rode through D.C. and then headed toward Cleveland. Dan decided before we left to get a navigation system he got a Magellan. Well he and Magellan didn't get along too well yesterday when he had one mile to spare before she finally got us to the gas station. Really I wish I had captured some of this on video. So far we have not had to call roadside assistance.

I did finally find a hat last night at Hard Rock Cafe of all places. It said "buy me." The hardest part of the trip for me has been seeing the cute little things I would have gotten for Avery. There was the cutest shirt for her last night so that made making my purchase even harder.

We are on our way to the Rock and Roll Hall of Fame. We have heard from several people how wonderful it is and can't wait to have a little fun listen to some good music and maybe learn a thing or two. After that we are headed toward Detroit (Southgate) for dinner at Dan's favorite Mexican restaurant (Mexican Gardens). We will stay in Michigan for a couple of days and then head back toward Alabama.

Please keep praying for us and the entire family. Don't forget to pray for all of our special friends. Hug your children more, kiss them often and tell them you love them every chance you get. Until Next Time. . . . .Missing Avery. . . . Gene Ann

May 2, 2008

Hello Everybody,

I just wanted to let everyone know we have once again changed our plans. We had originally planned to return home on Sunday but we have decided to keep moving for now. Savannah has been wonderful. We have enjoyed the sights, sounds and most especially the food. We will be leaving here tomorrow heading toward Washington D.C. for a day and then toward Detroit for a day or two and then home. We have mapped out several possibilities of where to go from here. I must say that before our next road trip I have to get convertible friendly hair and a cool hat to keep the sun burn away.

I will keep you posted as to when we will be back home. Please continue to pray for strength for our entire family. Don't forget to hug and kiss your children like it is the last time you will ever get to. Also, if they want ice cream cones for breakfast that is ok too (we did that lots of days just because). Please pray for all of our special friends. Until Next Time. . . .Missing Avery so very much. . . . Gene Ann

April 29, 2008

Hello Everybody,

I thought that I would able to journal faster than I have. I am finding it most difficult to find the words that I want so much to say. I have so many Avery stories to share with you all and in time I will try to do just that. The service was wonderful and most "perfect" today. I know that Avery would have approved and been delighted with everything.

Dan and I have decided to take a trip for a few days. We will be leaving in the little red convertible with the Curing Childhood tag that reads 4AVRY tomorrow. Not exactly sure where we are going but rumor has it Savannah might be the destination. We are just ready to get away.

Once we are back I will start back with updates. We would like to thank you all for the wonderful support and love you have showered us with. Thank you most especially for your prayers. Please continue to pray for all of our special friends and join us in praying ever so hard for a cure.

Until Next Time. . . . . .Gene Ann

April 26, 2008

The visitation will be Monday evening from 5:00 until 8:00 pm at Prattville Memorial. The funeral will be Tuesday at 11:00 am Trinity United Methodist in Prattville with burial following in Prattville Memory Gardens. Please in lieu of flowers please make memorial donations to Ride for Kids (www.rideforkids.org) or Hand-in-Paw (www.handinpaw.org).

I will update more information later. We are home getting settled right now. We have so many wonderful stories to share with you all of how we have been so blessed over the last few days. Avery will truly be missed by a multitude of people. Thank you all for your support and most especially for your prayers. Please join us in praying ever so hard to find a cure so that no more children have to endure the terrible pain of cancer. We love you all. . . . until later. . . .Gene Ann

April 26, 2008

Our sweet angel earned her wings this morning at 2:30. She is with all of her special friends in the heaven. Our baby is finally resting peacfully and not in pain anymore. We will update more later.... Dan

April 25, 2008

Hello Everybody,

As I sit and type this update I watch the most beautiful little girl finally resting taking a nap. I am enjoying every minute of watching her sleep and am trying not to watch any monitors (an old habit). Avery has been up since around 7:00 this morning but did not go to sleep until sometime around 4:00 am. We are hopeful that she will rest now.

She has been in pain most of the day today. She went 12 hours without any pain meds and now is paying the price. She is now getting pain medication on a schedule and not as needed. This should help to make her more comfortable. We have also started the weaning process of the vent. So far she has pretty much adapted to the changes and nothing has changed.

We have had so many special visitors today. Avery has talked to most of them and knows who has been by to see her. Amy and Brock Waggoner stopped by and Avery said "Brock. . . he's here. . . . I love you Brock!" I thought I would melt. These are the memories that I will treasure forever. She is so sweet, caring and gentle. Dan and I have had many special times with her today. At one point we all were laughing so hard. It was so good to see her laughing.

Now, we just sit and enjoy our time we have left. We cherish each minute that we have her and we know that she is going to a far better place where she can run, swim, play and do all of the things that she hasn't been able to do in a long time. Our hearts are heavy almost empty feeling at times but we know that she will soon be over joyed with happiness, good health and most importantly no more ouchies!

Please continue to pray for Avery and the rest of the family. With a heavy heart. . . . Gene Ann

April 24, 2008

Hello Everybody,

It is now very late and we are finally in a room on 5tower (549). The time in ICU has been rough especially the times that we cannot be with her. The staff has been wonderful and we cannot thank them enough for all they have done to bend the rules here and there to accomodate AVERY'S ARMY. Her enterige is growing each and every minute. It has been very important to us that everyone that stops by be able to visit with her. We are firm believers in sharing our time. We will be selfish when the time comes.

She has had a really good afternoon we even got a few smiles here and there. After seeing a smile this afternoon I was able to eat for the first time today. We have been talking to her about what is going on and trying to keep things as real as possible. She is somewhat scared and is fighting like crazy to not go to sleep. We think that the morphine is even wiring her. The versed was knocking her out which at least allowed her some rest.

We are still existing on very little sleep. We are spending the late night hours stealing as many hugs, kisses and precious moments that we can. The hardest part of this is when she says "when are we going home. . . .I want to go home now!" I just can't go home and do this especially since she is on the vent. We have been so blessed to have four years that no one thought we would have. She has had an excellent quality of life far exceeding that of most healthy children. She has touched so many lives and will continue to do so because we will never let her be forgotten. The plan for now is to keep her comfortable and give her all of the love we possibly can.

Dan's parents along with his sister Tina and her family arrived early this morning. His sister Donna got here early afternoon. We still have some family that are in the process of making arrangements to get here. We are so truly blessed with wonderful friends and family. I don't know where to start in thanking all of you for all you have done! Just know that anyone that wants to come vist with us is more than welcome to do so.

There were some very special moments tonight and I have to mention one in particular. It was when Molly Bailey (7 years old) dropped by for a visit. As most of you know Molly and Avery have a very special bond and one that is like nothing I can describe. It is incredible! Seeing the two of them interact was something that I will never forget. It was one of the moments in life that I know I will treasure forever. I will update more about the other special times in the days to come.

Thank you all so much for checking in on Avery. Please pray that there is no suffering. Please pray that she gets some much needed rest. Please remember to pray for all of our special friends! Please pray harder than ever that a cure is found. Don't forget to hug your children, grandchildren or even some elses children.

With a heavy heart. . . . . Gene Ann

April 23, 2008

We are in need of many Prayers tonight. Avery has taken a turn for the worse. We now think that tumor cells are blocking the ducts in her ventricles and basically we are being told that she won't be able to breathe on her own. The blockage is not allowing the fluid to get to the shunt and is building pressure. Dr. Reddy has told us that there isn't anything more they can do for our sweet angel. We have called our family in and are Praying that we get one more miracle. Please say a Prayer for Avery and hug your kids tonight...... Dan

11 pm.... Avery is out of surgery but has had a problem breathing on her own. She is on a vent in icu and still sedated somewhat. The surgery went ok but the pressure that they thought she had was not as bad as expected. Now it is a wait and see how much the surgery has helped versus what impact the disease is having. She had a seizure that had to be treated with medicine. We will have another ct scan in the morning. Please say a special prayer as you are reading this. Will update more later... Dan

April 20, 2008

Avery went to surgery at 5 pm to have a shunt placed. Her surgery last Tuesday did not work and the pressure in her brain elevated to the point she couldn't swallow, speak, and was having trouble breathing. We will update later tonight. Dan

April 21, 2008

Hello Everybody,

Today was a much better day than Avery has had in several days. She still has a way to go but the day was so much better. She actually took a nap for a couple of hours. She had a few spells of o2 numbers dipping but we finally got her hooked up to something different and that seemed to do the trick. She is not talking much and you really have to listen when she does because she doesn't have the volume that she did have.

We are scheduled to be at clinic on Wednesday at 1:15. We are seriously thinking if she doesn't feel any better by tomorrow morning taking her in then. Right now it is just a wait and see thing. The last few days Granddaddy has been the chosen one. Well, he had to go back to check on things and work this morning. It was tough but she has done well. Everytime she gets upset though she says "what is taking my granddaddy so long. . . .I want my granddaddy now. . . .RIGHT NOW!" We have had to use many bargaining tools today. Tiffany our crazy little elf from the North Pole may come back for a few weeks. If Avery is really good and doesn't get upset for a few days Santa is going to see what he can do. Mickey Mouse called tonight with some encouragement for Avery. Belle called with good night wishes. This all worked until 4:00 am.

She has had such a rough time lately and it is really taking a toll on all of us. She was so hungry tonight but could not eat anything because she is not swallowing very good. She is thirsty and when she drinks it comes back out of her nose or her trach. This scares us so much and although it is better we are praying really hard that a feeding tube is not in her future.

We would like to thank fairy Jalena for the wonderful surprise today. Avery loved the Share a Bear. We all made a wish and put them inside. How perfect an elephant. She started to name her Little Alice but she decided on Peanut. She helped to get her stuffed, fluffed and then she has snuggled with her ever since. Thank you so much for thinking of Avery and for making her day a little brighter.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that things get better soon. Please pray that the fluid starts to absorb and she gets some relief. Please pray that the swallowing comes back very, very soon. Remember to pray for all of our special friends especially Aaron (MRI on Saturday), Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . .

Gene Ann

April 19-20, 2008

Hello Everybody,

The last two days have been very hard. Avery is still not sleeping. We just knew that she would eventually pass out but that still has not happened. When she does sleep it is only two or three hours at a time. She is very frustrated and in pain. We called the on call service for clinic on Saturday and they told us to give her benadryl. After two teaspoons she only slept 3 hours and then was up for three hours. She has had so little sleep over the past three days.

Today she made Dan wash his car while she sat in the garage and made him work. We just moved all of the equipment out there and let her enjoy some beautiful weather. When she decided that she wanted her bath it took us three baths to get it right. She would get out back on the bed and demand to go back to the sink. She would say we didn't wash her tummy. Then she would say we didn't wash her hair right. Finally third time was the charm. This is from being totally exhausted and very cranky.

Sunday was so similar in that I had to wash her hair three times and then she lost it when we put her back on the bed. She was wanting back in the sink to wash it again. We could not get her to breath on her own. She was so upset that she could not catch her breath. We ended up calling 911 and going by ambulance to the Prattville ER and then by ambulance from there to Children's in Birmingham.

By the time they got her to Prattville she was fine. We went on the Children's hoping to get some answers. After several hours there they finally decided to do a CT scan. Nothing was any different from the MRI on March 26th. After talking with us they feel that the surgery was a success just by what she can do. However it is just going to take time for her body to absorb the excess csf fluid. No red flags so they sent us home. Ok, there is some humor in all of this. Of course I was in my pj's because I had gotten up cooked a pot roast and pot of lima beans for lunch. Not to mention packing everything up and getting everything ready so we would be prepared to stay a few days once there. Thank goodness Avery wanted Daddy to ride with her and I was able to at least go and get clothes on before going to Birmingham.

After being released from the hospital Avery wanted to stop at IHOP for pancakes. We decided to stop and pick it up instead of going in. That worked! We had to stop three times to give her breaths. Once we had to stop to change drivers. We finally made it home and it all started again. Thankfully Grandmother thought and called Josh a neighbor that is an RN. He came over and sat with us until we got her stable. She was upset and didn't want to breath on her own. We all took turns giving her breaths with the bag. Then Josh hooked up the bag where it was just giving her o2 directly into the trach and not going through the valve. Finally she calmed down and decided she would go to bed. She slept for a few hours and then was up for a few. Changing her diapers is the worst. She wants them just so so and we never seem to do it right. I just cringe and start praying when she says she is wet. Everyday I just stop and think of all of the things that we take for granted each day like the ability to get up and go potty whenever we need to with no problems. It really breaks me heart. The saddest part of the day was when she cried for over two hours for her Granddaddy. It was after we left the hospital and he decided to go home versus coming back home with us. Well, he drove two hours back to spend the night with her.

We played fruit basket turnover all night long. First she wanted Granddaddy, Mommy and Grandmother in the big bedroom. Yes, Grandmother slept in the princess bed. This lasted for a little while when she said "I just can't go to sleep without my daddy!" Ok Granddaddy got to go to Grandmother's room and sleep. We played switch and swap all night with whatever request she had. She in all got maybe 5 hours of sleep. We have decided against giving her benadryl because we feel that might have supressed her breathing this morning while she was having the episode she could not get over. Please pray that tomorrow is a much better day. Please pray that Avery will relax enough to get some much needed sleep and rest. Please pray for strength for all of us as we continue to do everything we possibly can to make things better for her.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that this week things get better. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Christopher (has surgery on Wednesday),Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina. Until Next Time. . . Gene Ann

April 18, 2008

Hello Everybody,

Today was a day of much patience. Avery woke up in the best mood and ready to begin her day complete with bath. She was very eager to get her bath but it didn't work the first time. She hurt too much and got very wobbly. Her o2 saturation went into the 50's so we decided to try again later. All of those that know Avery knows she doesn't forget anything so she insisted later on taking her bath. We finally succeeded complete with hair washed, bandage off. . . everything went well. Except the time she was off of o2 her numbers dropped drastically.

She decided to get in the big bed and sit up for while. She had sat up for about 4 hours already. She ended up sitting up for about 7 hours in all today. Finally she just fell over and said "I wiped out mommy. . . I'm ready to lay down for a while." Now for the part of having patience. . . . everytime I would try to close my eyes Avery would say "waky, waky, Mommy and I mean for real this time!" I was not allowed to sleep today at any time. She decided she would like cheese pizza for dinner so Daddy went and picked up a couple (since that is her kick this week). She ate over half a piece and then wanted to watch movies. She also decided that she was going to sleep at the foot of Mommy and Daddy's bed tonight. Ok, so it took a while to figure out how this was going to work but we managed for most everyone to be comfortable. Dan got the side with leg room. Mommy and Avery shared the side with no leg room but Avery got to stretch out. She seemed to be comfortable and maybe in a day or two my legs will relax again.

Ok, so Avery was still awake at 1:44, 2:30, 3:15, 4:30, 6:00, 7:30 you get the picture. We would say go to sleep and she would say "but I'm not even tired. . . . mommy waky, waky and I mean for real this time!" We watched one movie "The Santa Claus 3" what seems like five times. We had to take Avery's temp several times and even though she was hot to the touch all over except her face and head no fever. She had to take Tylenol several times during the night and early morning to deal with a little pain. Her heart rate was up which indicated to us she was in pain. She still doesn't want to tell us when she is hurting from fear of having to go back to the hospital.

Well we might not have gotten any rest or sleep but Avery did get a bath today and her bandage removed. We washed her incision and she did very well. We are hopeful that when she does decide to go to sleep that she will sleep for at least 12 hours or more. For now we are just going to do as we are told and not upset her.

Thank you all for checking in on Avery. Thank you for your thoughts, messages, calls and most especially for your prayers. Please continue to pray for Avery's total healing. Please pray that this procedure works and that she feels better very soon. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Christopher (will be having surgery on Wednesday), Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . .

Gene Ann

April 17, 2008

Hello Everybody,

Today was a good day. Avery had the most pain today that she has had. She had to take tylenol every four hours and that seemed to do the trick. She would not sit up or get out of the bed today. We tried twice and she just could not do it. She said "my head hurts." I think it is from the surgery itself and not pressure because the tylenol took care of that along with some gentle rubbing.

Avery took a four hour nap this afternoon. That is unusual for her but she really needed the down time. She had trouble eating today with the secretions. Everything seems to come out of her nose however she was laying down to eat. I tried to prop her up but she couldn't take the pain. Hopefully in a day or two she will be much better and ready to venture out of the bed.

Pilot has been a handful today. She wants to play, bark and just be a dog. The barking is too loud for Avery and we are all too tired to play. We finally found a few things to entertain her with. It is amazing how a tennis ball can entertain a dog for hours. She chases it around the house then she tries to pull all of the fuzz off and has almost succeeded. I think they really spoiled her at the doggy resort. Hopefully we can get her back to reality in a day or two. Right now we have to keep her in the other end of the house so that she doesn't jump in the bed with Avery. We would not want her to hurt Avery.

Tomorrow we are just going to do more of the same. Sit here and try to make Avery as comfortable as possible. She can take the bandage off tomorrow. She seems to be looking forward to that but mommy is dreading it a little. Grandmother is going home tomorrow but will be back on Saturday afternoon. Daddy has to go to Jacksonville Florida on Sunday but will hopefully be back on Monday night if all goes well. If all doesn't go well he will be back sometime on Tuesday. Avery will go to clinic on Wednesday for a visit with Dr. Reddy. We are not sure that she will get chemo more than likely not. It may be a few weeks before she gets back on schedule we are not sure but will post as soon as we find out.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that this procedure takes care of the fluid and pressure problems she was experiencing. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time . . . . . Gene Ann

Thank you Ms. Francine for making our day. The package was wonderful. Avery got so excited! She loves the webkin and can't wait to play on-line with her. Hopefully that is incentive to get out of bed sometime this weekend. Thank you for all you do we love you!

April 16, 2008

Hello Everybody,

Happy Birthday Sherri. We hope you had a wonderful day filled with many great blessings. We are so happy that Sammy is home to share the day with you.

Now, we got home and all has been pretty good for the most part for the day. I spoke too soon earlier when I said nothing was coming out of her nose and trach. It started again with lunch. She must have been starving because she wanted a corn dog, onion rings, peanut butter and jelly, and pediasure. Wow, she ate a bunch but then it got so bad that we had to talk her into taking a break. She took a good long nap. I picked up Pilot who was so happy to see me that she had an accident in the floor when she saw me. That or maybe she was scared seeing me but I'll take the first. I dropped Pilot off at the house and went back to the grocery store to pick up a few things. A few things for me usually means a big bill of groceries. I broke one of my rules and went to the grocery store hungry. Everything look good but I did good and didn't get any junk.

I came in unloaded and started dinner before Avery woke up. We had planned to eat between 6 and 6:30 but by the time we got Cheese pizza for Avery and fed her, cooked, grilled, tried to get her situated it was close to 8:00. Oh well! Charlie and Jennie stopped by to see Avery. When they stopped by Avery was having problems with her o2 numbers. She had just eaten and something was blocking the trach. Finally we got her suctioned enough to clear it out and her numbers went up and stayed up. It is difficult to get that to happen sometimes but tonight she did great helping us and getting her numbers back up.

She was ready to go to bed after that and so we turned out the lights and got everything quiet for her. She says she feels much better and her head doesn't hurt anymore. However she has had to take tylenol today because at times her head does hurt from teh surgery. Hopefully in a few days this will all go away. Bless her heart she would not take tylenol in the hospital because she was afraid she would not get to go home if she told us that she was hurting. How smart but sad at the same time.

We are hopeful that in a few days everything will be better. She still doesn't want to get up. She is just laying down in the princess bed watching her movies and watching disney channel. She is moving her hands and feet more than usual. She can almost do the crab position as if to do the crab walk. Other than that she just wants to lay down and be left alone. She does like it when mommy rubs her feet, legs, arms, hands with lotion. This is how I have been calming her down for the past few days. I asked her today when was my turn? She just laughed and said "silly mommy!"

Thank you all for checking in on Avery. Thank you all for your thoughts, messages, calls and most especially for your prayers. Please pray that the next few days are easy tolerated for Avery and that she recovers quickly. Please pray that this procedure works and she can get off of steroids quickly. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina. Until Next Time. . . . .Gene Ann

Thank you fairy Abby for the cool stuff. Avery loved the flip flops and book. She took them with her to the hospital. She loved the lip gloss and candy too. Thank you Robin (Abby's mom) for the necklace for me. I was so excited when I got fairy mail. It was so sweet and something that I will enjoy especially because you sent it. Thank you both for making our day on Monday.

April 15, 2007

Hello Everybody,

The morning started very early at 4:00 am. Avery began getting really scared when she got up. She did not want to go and just didn't understand what she was going for. We tried to explain it to her and have been working this scenerio for days. We told her is like when she is taking a bath in the sink and we have to pull the plug out when we are rinsing her hair so that we don't over flow the sink because then water would go everywhere and there would be this huge mess to clean up. We told her that her brain is like the sink and her plug is not working so the water is backing up. We assured her that Dr. Wellons will fix her drain to where the fluid will drain properly hopefully helping her to feel much better. I thought is was a good scenerio I just hope that she understands it enough to calm her down a little.

We got to One Day early! Yes, believe it or not we were early. That is a small miracle for all of us but it happened. We got her checked in and could tell something was not right when they said "we don't have a room ready for her and it might be a while so we will fill out all of our stuff and then later because she is not on the schedule until 1:00 we will get you in a room." What we thought. We were quick to tell them that they had her down first and the first case was going to be second. They came back with "well we wondered what was going on since the first case is not here yet." Ok, we finally got it straightened out and they immediately got us to a room. We ordered Avery something to make her relax. It seemed to help a little but she was still determined that she was wearing her dress to the OR. They were fine with that and said they would change her once they got her comfortable and out! She got scared when we walked with her and she realized that we could not go any further. I got really upset when she said "I just want my mommy!" I have not been the chosen one in weeks and when she wanted me it broke my heart. It was very hard seeing her rolled away. Each time gets harder and harder. The wait time seemed like forever. They sent us back to the big waiting room. We would like to thank several people that came and waited with us. Thank you Mrs. Nena, Fox, Mike, Ashley (GiGi's daughter), and Steve (our pastor from Trinity United Methodist in Prattville). It really helped to make the time go a little faster having so much support with us. Thank you Fox for bringing breakfast with you it was wonderful and so thoughtful.

Now, it took a little longer than we expected. Of course is that not always the case. The OR nurses were great to call us every so often and let us know how she was doing. You should have seen us run everytime our pager went off. Finally Dr. Wellons came out and he was very pleased. They were able to do the ETV (Endoscopic Third Ventriculostomy). Ok what is that for those that are not quite sure. They went into almost the same incision as her temporary drain when she was 10 months old. It is in the top right corner (she didn't loose much hair). They use a camera to get to the third ventricle and then they tunnel and make a hole in the bottom of the third ventricle which acts as a by-pass (it opens up and allows the blocked fluid to drain into the fourth ventricle and then be reabsorbed down below the fourth ventricle). There is no hardware no shunt just a hole. This is a new procedure that they are just now doing (since like 2007). The risks were all upfront because of the vein that runs along the bottom of the third ventricle can sometimes be in a different position and that would not be good. Everything worked was in the proper place and seems to be a success to this point. It will take a few days to see the major changes even weeks and months later we should see changes. He told us that when they made the hole he noticed some calcification which could be due to tumor or treatments that she has received. He definitley feels there was a blockage and that she will get some relief from the procedure. He also assured me that he told everyone to get me in recovery as soon as possible. Those ten minutes seemed like an eternity. When I got to recovery she was in really good spirits and still loopy from the anestesia. They were trying to get blood from her iv but were not having any luck. The lab tech came in to try and stick her but she is so swollen from the steroids that she could not get a vein and she tried twice fishing around in Avery's arm and digging to try and get something. I had told them when I walked in that she has a port but one of tests can't be pulled from the port. The lab tech then told them how to pull it from the port wasting enough blood to clear the line and the test would be fine. So that is what they did and then the nurse took out her iv since she had a noodle in her port. This made Avery very excited. By the way we loved our recovery nurse Michelle. She was awesome! She gave Avery a talking Remi from "Ratitoulle." She was so good, kind and took such good care of us all. It took several hours to get a room so we just hung out in recovery. The best words I heard all day was "my head doesn't hurt anymore!"

Once we got to the room on the 6th floor (first time we have been on 6) we were greeted with another great nurse Ginger. We were so excited to have a dvd player in the room because we forgot Avery's small one. She watched a movie or two and then decided she needed a break. GiGi stopped by for a visit and ate dinner with us. We ordered Fish Market and it was yummy as always. Dr. Nicole and Allison stopped by recovery to see Avery and said she was looking good. I was getting lunch when they stopped by. We had a great dinner, enjoyed watching Biggest Looser and then Avery said "I'm ready to go to bed!" We got everything ready and went to bed. However she was still up several hours later scared to go to sleep until one of us got in bed with her. Daddy got in bed with her and finally she went to sleep. She was so relaxed once she did that her heart rate went down into the 60's so the pulse ox beeped for a while. Finally someone came in and adjusted the numbers and she did not beep again. When she was saying her prayers tonight she said "and Thank you GOD for Dr. Wellons!" We were very touched. So far so good.

Thank you all for checking in on Avery. Thank you all for your thoughts, messages, calls and most especially for your prayers. Thank you Connie and Christopher for having Mickey Mouse call tonight. She got so excited! She also loved the calls last night from Cinderella and Jasmine. You all are wonderful. Please continue to pray for Avery's total healing. Please pray that she recovers from this procedure and is able to get off of steroids pretty quickly. Remember to pray for all of our special friends esepcially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt.Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . .

Gene Ann

April 14, 2008

Hello Everybody,

The day before surgery and the worst day Avery has had in a long time. Today she was unable to get out of bed at all. She was hurting and could only lay on one side in one position to get comfortable. We had to change panties several times because she could not even get up to go and potty. We called the hospital hoping that they would go ahead and admit her so they could make her more comfortable but that didn't work either.

Dan worked from home and got tied up on a conference call until after 6:00 pm. We packed up got the car ready and decided there was no way that she could ride in a car seat. Our little secret we told her. She would ride laying down in the backseat with Daddy. She liked the idea until it came time to pick her up and put her in the stroller and then in the car. We had to use the bag both times. The pain was so bad. But minutes after having one of the worst episodes and being in pain she told one of her aunts on the phone "I'm perfect!"

Once we got to the hotel it was major drama getting her out of the car. She decided she wanted to just go on to the hospital. Then she said "NO, I want to go upstairs and eat my cheese pizza!" Believe it or not Mommy was able to get her out of the car and into the stroller without any pain. Then I was able to get her out of the stroller and into the bed without any pain. By this time we were all exhausted. It was around 9:30 pm and no one had dinner. We ordered up some stuff from the restaurant, ate and tried to sleep.

During all of this how terrible it has been the one thing Avery has not lost is her sense of humor. Tonight while Dan was packing she told him "daddy be sure to pack you a hairbrush!" He laughed and laughed because he has no hair. She was being funny! We are all so hopeful of what tomorrow will bring.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that the procedure goes well. Please pray for patience as we wait and as she continues to heal. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . .

Gene Ann

April 16, 2008

Hello Everybody,

We are HOME! Believe it or not Dr. Wellons came in before 8:00 am and said she was ready to go home. She was so happy. She would not go to sleep last night until one of us got in the bed with her. She was so afraid of what would happen to her. She finally went to sleep and got woke up early with wonderful news. Of course the discharge process took a little time. We could have been home sooner but she wanted to eat her breakfast first and that took longer than getting discharged. I will update more on the last couple of days later but I really want and need a shower now. Also, Avery is feeling very good. The secretions are much better and so far very little if any has come back out of her nose. She is in the Princess bed watching Disney Channel. Grandmother has gone to Sonic to pick up onion rings and corn dogs (Avery's first request of the day). Daddy is working from home and Granddaddy is making adjustments to the Princess bed so Avery can be more comfortable. We will pick Pilot up after we get everything done and settled down a bit. Thank you all so much for the messages, calls and most especially for your prayers. Thanks so much for everything! Until Later. . . . Gene Ann

April 15, 2008

Avery is out of surgery and in recovery. Everything went well, she had one small bleed but they were able to stop it without too much trouble. They were able to do the etv and not the shunt. She is alert and telling us that she doesn't have any ouchies. The hospital is full where they want to move her and we could be in recovery for a few hours. We will update more once we have access to our laptop. Dan.

April 12, 2008

Hello Everybody,

Today was not a good day. Avery got up wanted a bath but had an episode before we could get her to the potty. We finally got her calmed down and she still insisted on a bath so that is just what we did. Now, I am to blame for some of what is coming. I realized at 5:00 am this morning that Avery did not get her final dose of medication last night. This is the first time ever this has happened. We both fell asleep before 9:00 last night and well my brain is just drained lately. She got most of her medication everything except zoloft at 7:15. For some reason she doesn't want to take the zoloft anymore. We got her bathed, hair washed, hair dried and back on the big bed. She had another small episode so we decided a nap was in order. She and Daddy went back to sleep for several hours.

They both got up after noon sometime. I know I got several things done that needed taking care of and then sat down and read the paper. Grandmother went home to do a few things and get some warmer clothes. Avery hasn't wanted to eat today. Everything is coming out of her nose when she eats. The fluid or secretions are so bad that she has to be suctioned very often. During one of her episodes today she did not want to breath. She kept shaking her head when we would say "breath Avery come on you can do it. . . just one big breath!" I guess I lost it and told her "do you know what happens if you don't breath. . . .you will go to heaven and mommy and daddy will not have a little girl anymore. . . . mommy and daddy will be very sad and poor Pilot will even cry. . . please breath!" She looked at us with one of her famous looks and said "ok." We asked her if she needed to go to the hospital and she said "yes!" But she thought we were asking if it was ok to go to the hospital. Once she knew it was an option she said "no I don't want to go. . .NO, NO, NO!!!!"

She didn't get out of bed at all today. Her mobility is even more limited than it was and she told us "my head hurts!" We have given her a big girl dose of Tylenol several times today and tried to keep her as comfortable as possible. She got to stay in the big bed and watch television. We are having potty issues big time right now. She hasn't let us know today when she has had to go. She just tells us "my panties are wet." It has been a very draining day. Her numbers have not been good but the extra secretions have a little to do with that. Everytime she would drink or eat the machine would beep most of the time. She finally gave up on eating so I picked up some Pediasure. She liked it and drank the whole bottle.

Tonight she has been much better than she has been in two days. Of course we decided to give her the dose of steroid that she missed yesterday. She got it three times today instead of twice. Shortly after the third dose she was feeling better. We really wish that we had done the procedure this week and had that behind us. If we can just make it one more day. We all feel good about Tuesday. If nothing else she will get some relief. Please pray that tomorrow is better and episode free. Please pray that we make it to Birmingham tomorrow afternoon safely. We will be boarding Pilot at the doggy condos with the ultimate resort treatment for a few days.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that tomorrow is a better day. Please pray that surgery on Tuesday goes well with no complications. Remember to pray for all of our special freinds especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . .

Gene Ann

April 12, 2008

Hello Everybody,

What a day! Avery got up early wanted her bath and demanded breakfast and medicine to be given in the bath. Ok, that is what I did. Dan got up early and was going to some car thing in Montgomery with Scott. Scott got here but Dan told him he would just meet him there. I needed a thing or two from the grocery store and Avery wanted a gravy biscuit from Arby's. When he got back he helped me get Avery into the sink for her bath. We bathed her, washed her hair, Grandmother dried her hair and got her back to the bed. She was unhappy but truth be told she just needed a nap. So they decided to take a nap together. They both slept for a couple of hours. Dan got up and decided to go check out the car thing. I was cooking making some things to take to the fish fry. Avery decided she wanted in the stroller and she wanted to play some games. She and Grandmother played games in the living room. Well, she decided she was ready for onion rings and her lunch so we wheeled her into the kitchen. She stuffed her mouth full and then proceeded to tell us something that neither of us could understand. She had a major episode. I had to get Grandmother to call Dan and get some things. I had to use the bag and chest compressions to get her to breath on her own again. When she was able to catch her breath she said "I want my daddy!" Ok, mommy is no longer the one she wants in a crisis and I am ok with that.

Before he could get back home which it was time for him to be back she had another small episode. When Dan got home he made the decision not to go to the fish fry seeing how it is about an hour away which would mean two hours in the car. Avery got really upset and said "I am so dissappointed I really wanted to go to the fish fry. . . oh man Daddy I really wanted to go!" She began to get upset because we were not going so we decided to try it and see what happens.

Charlie and Jennie followed us down to the river. We took Pilot who did not do very well in the car on the way down (too much energy and I think she thought we were taking her to doggy day care). We were about 15 minutes from the river when we had to pull over and give Avery some air. None of us in the car understood what she was saying. It is really hard right now to understand her because of the excess fluid in her mouth. We are now having to suction the mouth, trach and nose. At first we thought it was allergies/sinus but now we are thinking just excess fluid. Ok, so we get back on the road with an entirely different child. She was very sweet, funny and very happy to be going somewhere with Pilot. We got there got everything out which we packed as if we were moving in (potty, little o2 machine, big o2 machine, go bag, bag, chargers, o2 lines, pulse ox machine, extra pulse ox probe not to mention the mac and cheese, dirt dessert, punch). Avery decided she was going to roast marshmallows first. Mr. Fish already had the fire going for her. She ate a couple of marshmallows well she ate until they started coming out of her nose which is something that has started happening lately. Then she wanted to go in and watch "Happy Feet" and take a break. She was the first one to get hush puppies and fish. She ate some of most everything. Everything was so delicious. I really enjoyed myself. I love fried fish but Dan only eats it once or twice a year (not his favorite but he ate). We stayed in with Avery to help her and took turns getting to eat. She had to go potty and that went really good since we took the little potty. But after that she decided she was ready to go home. She did let us finish eating first. She did say her goodbyes and was very patient getting to the car. She thought it was funny because Pilot now has a boyfriend and his name is Jack. She said "my husbands name is Jack and he lives in Boston. . .and now Pilot has a boyfriend named Jack that lives at the river. . . that is funny!" Pilot wasn't too fond of Jack but she did better than we anticipated. Pilot was a different dog on the ride home. She sat in Grandmother's lap since mommy had to drive home. Daddy was the chosen one to sit with Avery. I think Pilot was just so thankful that we didn't leave her at the river. Maybe next time she will be trained well enough to get off of the leash when we visit and she can run for a while. This time we were scared she might run away and not come back.

We got back home without any problems. But getting into the house was another story. Avery decided that Daddy could carry her in versus getting the stroller out. About half the way through the garage she was yelling put me down. By the time he got her in she was not breathing. Grandmother and I had to run to the car and get out all of the machines and get them back in as fast as possible. We got back in and started bagging. It was a tough one. We decided she needed o2 and to rest for a while. We left her alone for a few minutes when she yelled "ok mommy I'm ready to do my nails now but first I need to go potty." That is what we did. I gave her a manicure and pedicure. We painted the fingernails and tomorrow we will do nail art. Thank you Jack and Erin for the great birthday present. Avery loves the nail art book and polish. She was very happy to get it and can't wait for mommy to get creative with her nails. I love the fact that it is very easy to do! Thank you both so much. As for tomorrow we hope it is better than today was. As for the rest of the night well I don't think that me or Avery can tell you because we both fell asleep watching movies really early.

Thank you all for checking in on Avery. Thank you all for your thoughts, messages and most especially for your prayers. Please continue to pray for Avery's total healing. Please pray that the episodes stop. Please pray that everything goes well on Tuesday and there are no complications. Please pray that she can get off of steroids soon. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . .

Gene Ann

April 11, 2008

Hello Everybody,

Today was a very long day but productive. First of all we were 20 minutes late getting to the appointment. Dan had to work for a couple of hours this morning and he got caught up in something so we were a lot later leaving than planned. We called ahead so they would not think we were not going to show up. So we finally get there and Dr. Wellons had been called to the OR so we had to wait another 30 minutes or later in the waiting room and another 30 minutes in the exam room. Avery was entertained with a Barney video so that made her happy. When Dr. Wellons came into the room she told him "Can we please get me off of sterrioids!"

Dr. Wellons did a quick neuro exam and she did pretty good. We then sent her out of the room to play with Granddaddy and Grandmother while we talked to Dr. Wellons. He feels that she definitley needs some relief and needs off of steroids. He also feels with about 85% certainity he can do a procedure called ETV Edoscopic Third Ventriculostomy which would mean making a hole in the floor of the third ventricle to allow free flow of spinal fluid into the basal cisterns for absorption. Ok there are risks involved with this procedure up front but fewer down the road. If this procedure is not possible once he gets in he will put in a VP shunt which has little risks early but greater risks for infection and problems down the road. So he moved his schedule around and she will be first case on Tuesday morning 6:00 am. He says he doesn't know how much this will help the mobility but it will offer her some relief and hopefully a way off of steroids.

After we talked with him we had to answer a few questions and then go to One Day Surgery to APASS for all of the questions a quick look over and vitals taken of Avery and then on to get blood work done. This was the tricky part. They sent us to the lab which will not access the port. So we asked to go to clinic and let them do it. Ok not a problem. We get to clinic and they tell us that one of the tests ordered cannot be pulled out of the port because it would give a false reading. We told Avery we would have to go to the lab and she had a minor episode. She began to hold her breath and well we ended up in a room in clinic getting oxygen and puffs from the bag to get her able to tell us what she wanted. She demanded to be accessed and get it that way. They figured out a way to get it and hopefully it will come back just fine. If not we might have to go on Monday afternoon to get it done all over again out of the arm. Please pray that what that got is good and we do not have to have labs done over again.

So we were finally able to leave 3:30 pm. Now, we are all very worried about Pilot because we left her in her crate expecting to be home before 3:00. Avery was starving as we all were and she was wanting to go to Applebee's. On the way she said "I'm going to need a menu when we get there because I am ordering one of everything!" Ok we almost did order one of everything because everyone had huge appetites. She ordered a grilled cheese and chicken fingers (two kids entrees). Ok she deserved it and nothing went to waste. She ate some of Grandmother's, Granddaddy's, Mommy's and Daddy's dinner. She made a happy plate of what we fixed for her and then asked for dessert which she and Granddaddy ate all of. It was wonderful watching her eat and enjoying a nice meal out. The storm hit as we were finishing up and we had to stay a little longer than planned. Avery decided she needed to potty. She did a great job and didn't hold her breath but as we leaving the restroom she decided she did not want to go home and lost it. We rushed to the car and hooked up the o2. We had to bag for a second or two. Finally she started talking to us and we learned she wanted to go to Target and get another dress like the one she wears everyday. Ok, we stopped but no dress. She is in the bedroom now watching a movie and demanding that I go to Target and find one. So I guess I better do that. Oh, Pilot did great. She was very upset with us but has been really sweet since we got home. She moved her crate halfway accross the bedroom and tore her pillow into shredds but she was ok and very happy to see us. She went outside did her thing, came in ate, loved on all of us and is now napping.

Tomorrow we are scheduled to go to the river for a fish fry. Avery really wants to go and we will try it. She is happy because she can take Pilot. I don't think we will make Pilot sleep in the crate tonight. She might get to sleep at the foot of Mommy and Daddy's bed. She really deserves the royal treatment for being so good today. Avery also deserves a great treat (Dairy Queen) tonight too.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that the procedure on Tuesday will be successful with no complications. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina. Also, Paige got good clear MRI results today.

Until Next Time. . . . . .Gene Ann

April 10, 2008

Hello Everybody,

Today was a much better day. Avery got up extra early ready for a bath. We had to talk her into eating breakfast first. I put her off as long as possible on the bath because I didn't get her dress washed and ready for today last night like I had planned. She is on this kick of wearing only one thing for a while. She has a few favorite dresses but only wears one for days at a time then it will be on to something new. Finally I knew it would be ok to let her take her bath. She did very good. She was in the best mood.

After her bath she decided to watch a movie. She watched "Game Plan" then wanted to watch "Days of Our Lives" with Mommy and Grandmother. She doesn't have a clue about the show but knows all of the characters. This show still remains my stress relief break from reality. She ate much better today than she has been.

This afternoon we played games. She is getting good at some of the word and letter games. She beats me every time. Grandmother had an errand or two to run. While she was out Mrs. Jennie brought Pilot by a new ensamble. It is too cute. Pilot just looks at us like we are totally crazy but doesn't fuss when we change her. Avery has finally aggreed to let her take them off to sleep. After Jennie left Avery decided she wanted to go to the nail salon to get her nails done. Well, I'm not quite ready for that yet. I think I would be scared half to death something would set her off. Especially since they don't understand everything she says. I told her we would see but I would be happy to paint them for her. She had a mini meltdown that ended in a small episode. A quick walk around the house with Pilot helped her to forget the nail salon.

She was very funny this afternoon. We were talking about going to see Dr. Wellons tomorrow and she said "I want to tell him by myself that I want off of sterrioids. . . ok mommy. . . I'm going to say Dr. Wellons I want to stop taking sterrioids and you will do whatever I say ok!" It was suppose to be and I will do whatever you say do but somehow she changed the wording. I think she is ready for anything if that means eventually getting off of steroids. We are expecting only good things coming from the meeting tomorrow with Dr. Wellons. Our appointment is at 11:00 and I think that is the last appointment for the day. I will update as soon as possible to let everybody know what happens.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that the episodes stop. Please pray that she regains her strength, mobility and endurance. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Paige (has an MRI tomorrow), Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . .Gene Ann

P.S. Fairy Abby you rock! The last packages have been wonderful. Avery loved the jacket and needed a light weight one that fit for right now. She loved the My Little Pony, Fancy Nancy sticker book, lip gloss and bandaids. She thinks you are the best! We love Fancy Nancy it is one of our favorites. Thank you so much for making our weeks brighter with your sweet notes and thoughtful gifts.

April 9, 2008

Hello Everybody,

Today was not the best day. Avery ended up having four episodes during the day. Three small ones and one really big one. But here is how the day went. She slept in for her (past 8:00). She got up wanted her bath immediately. Well we finally talked her into eating a little breakfast first. She only ate about three bites and then demanded her bath. Before we could get her water ready she had her first episode. I had to call Dan to talk to her but she didn't want to talk this time. She was upset about something which we have not figured out what it was.

So the bath was ready and I went to put her in and she had another one. I had to pick her up and run back to the princess bed with her. This one was a little worse than the one before because I had to use the bag to get her enough oxygen to get her breathing on her own. Ok, so by now I am totally exhausted and Grandmother is a nervous wreck. There will be no outings today! She did finally get her bath. She got ready and was pretty calm for a while. She had another little episode over something that I can't even remember now. She told me "I'm ready for my daddy to get back home. . . when will he be home?" We called him again and he was wrapping up in Nashville and heading this way but would not be here until 5:30 or later. Avery seemed to be ok with that so we went outside and sat for a while in the sunshine. She decided after a while that she wanted to go back in and play a game. She beat me twice at Pretty Pretty Princess. We put together a puzzle. We saw Dan pass by the front of the house so we all went outside to greet him even Pilot. He was ready for dinner so we ordered out mexican food. Avery decided that we needed to eat outside. It was perfect. The food was wonderful the weather was great.

We came back inside from dinner and Avery decided she needed to go to the big bed. She and Daddy were going to watch the hockey game together and play video games. Well, first of all she needed to potty. As I was getting her off of the potty I didn't do something exactly right. She fell over but I grabbed her just in time before she hit the floor but I could not get her back up. Dan was in the big potty and he had to rush out to help. We got her to the princess bed and she was out. She was turning blue and not responding to us. Just the bag was not working. I started chest compressions while Dan yelled for Grandmother to call 9-1-1. Well, thank goodness by the time she got off of the phone with them Avery was alert. We always start asking her questions to make sure she is ok. She answered all of them and then said "I'm ready to take my medicine and go to bed." So we called 9-1-1 back and cancelled but the fire and rescue came anyway to make sure everything was ok. We met them outside and explained the situation and that she was ok. We sure didn't want to freak her out. Avery was watching television and resting with some o2 when we came back in. She was ready to put on her nightgown. This was the worst episode that Dan has witnessed. The scarriest part of this is we aren't scared anymore when she has these. We do what we have to do and it doesn't freak us out. Well, Grandmother still gets upset but Dan and I don't. That scares us more than anything. I guess it is adrenaline plus knowing that she is going to be ok mixed with knowing what to do. I never thought in all of my life I would learn to do the things I have learned in the last four years. Early in my life I had decided to go into medicine so I volunteered for many years at the hospital and decided really quick this was not what I wanted to do. But I loved volunteering and continued all the way through college putting in as many hours as I could squeeze in. Never in all of those 7 plus years did I ever witness the things that I now see at home sometimes on the daily basis.

Avery did not eat very good at all today. She only ate a few bites of breakfast, half a piece of cheese pizza, three bites of oreo pudding and maybe three bites of chicken fajitas at dinner. That is the way she use to eat. She has had some major balance issues for the past few days. She also was holding her head to the side for a while today and not sitting up straight. We are very hopeful about Friday and we are feeling that a shunt is the way to go to get her some relief. Please be in prayer with us that this is the right decision. We also need prayers for strength.

Thank you all for checking in on Avery. Please continue to pray for Avery's total healing. Please pray that the episodes stop. Please pray that she regains her mobility, strength and endurance. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nicholas, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . . .

Gene Ann

April 9, 2008

Hello Everybody,

Happy Birthday Mrs. Nena. We love you and hope you have a wonderful birthday. Avery said "oh, can we have cake!" She loves birthdays! We hope you have a great day! I will update later. . . .Gene Ann

April 8, 2008

Hello Everybody,

Overall a very good day. Avery slept a little later today which was a very good thing. She got up and wanted Arby's for breakfast. Grandmother went and picked it up for her. She ate a little and then wanted her bath. While she was taking her bath she said "mommy can we please go shopping today. . . . I really need some new clothes. . . . .can we go to the mall or something. . . oh come on mommy we can take the car!" I'm not ready to venture to the mall but Target isn't that far. We struck a deal real quick. She assured me she would be just fine to go to Target shopping. We all got ready and headed out. . .well it took a while for us to all get ready and stuff done to go. . .but we made it by 12:30.

Our shopping trip was great. Avery had gotten a few gift cards to Target so she was able to spend them. She picked out some spring dresses, new sandals and a Pretty Pretty Princess Cinderella game. She did very good in Target even when mommy didn't put the dress she really wanted in the cart. She said "STOP! I wanted that pink dress. . . it was my favorite!" So we went back and put it in the cart. I thought it would be too big but it fit really good and just loose enough to be very comfy. She decided it was time to check-out and go.

We got in the car and she said "ok. . now I'm hungry and I want to go to Church's for mashed potatoes and gravy and okra. . . . Oh mommy I want ice cream from sonic and some peanut butter cookies from where ever they have cookies. . . . .oh I'm just so hungry." Ok so we went to Church's got what she wanted, went to McDonald's for ice cream and then headed home to check on Pilot. A few hours later Avery wanted to know where her cookies were so Grandmother had to go to Subway and pick up peanut butter cookies. We could tell she was getting very tired. This was a busy day for her.

She decided she wanted cheese pizza for dinner. I dug and found a slice in the refrigerator. I warmed it and fixed her some dipping sauce. Grandmother took it in to feed her and she had a meltdown. I had to rush in and move her to the princess bed and crank up the o2. She was really upset about something and it took me about ten minutes to get her calmed down. Finally she told me she wanted a big cheese pizza and she wanted to pizza dude to deliver it. Ok, that is easy enough. I called and ordered a large cheese pizza. By the time it got here she was so sleepy that she ate two bites and was ready for bed. Not a problem there will be plenty of cheese pizza for Avery and Daddy tomorrow. Thank goodness we do not have clinic tomorrow. I am already a nervous wreck just going somewhere within 5 miles of the house. We will all go to the nuerosurgery clinic on Friday at 11:00. We have talked about it and are really leaning toward the shunt. We just have to hear what he has to say and then find out when it can be done. It might be as early as Tuesday or Wednesday of next week. Oh, Dan will home tomorrow night and Avery took the news better than either thought she would. She was a little disappointed but she rebounded really quick without upset.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that the episodes stop. Please pray for strength as we meet and make some tough decisions on Friday. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina. Please also say a prayer for our friend Nicholas he is in the hospital. Stop by and leave him a message.

Until Next Time. . . .

Gene Ann

April 8, 2008

Hello Everybody,

Happy Birthday Mrs. Pat. We hope that your day is filled with many blessings and all things wonderful. Thank you for checking in on Avery everyday. Have a great birthday. . . . . Love, Gene Ann and Avery

April 7, 2008

Hello Everybody,

Today was a beautiful day. Avery got up early ready to eat and take a bath. It was really funny she sat up in bed and yelled "OK I'm up now and I'm ready for breakfast!" We were able to talk her out of washing her hair today. After that she decided that she really needed a game from Toys r us that she had asked for her birthday and did not get. She was so sweet about it saying "mommy I really wanted that glass slipper game for my birthday but nobody got it for me. . . do you think you could go get with one of my gift cards. . . please mommy. . . I really want to play that game today?" Ok I decided to use this game as a bargaining tool for daddy leaving. We struck a good deal and off to Toys r Us I went as quickly as possible before daddy had to leave. I got the game and rushed back home the whole trip taking me about an hour. When I got back home she was in the stroller and ready to play.

We played the game together it is really cute and an easy one for her to play. Then Dan had to pack and leave (3:15). She was ok with it but we had to fabricate the story of his trip just a little. He told her he would try to be back late tonight but her might have to stay one night to help straighten out a few things. I don't know what he is going to tell her tomorrow when he calls because he is not suppose to be home until Wednesday night.

We enjoyed a visit from Mrs. Avery and her two boys. They brought Avery the coolest birthday present from Mrs. Avery and Mrs. Lynn (Avery's Mother's Day Out teachers). She loved it and is ready to go to Blockbuster now to rent a movie that she gets to pick out. Although she said she would wait on Daddy to get back home so he could go with us.

We went for a walk outside. Avery in the stroller and Pilot on the leash. Poor Grandmother had Pilot and she finally asked did I think she would ever get any better at the leash thing. She wants to go where she wants to go. I will say this though she is getting better at most everything else. She really is a sweet dog. After the walk we came in and watch a movie and Avery decided she was ready to dinner (5:00). She ate pasta and onion rings. After she ate her last bite she said "now lets go to PetSmart for a new ensamble for Pilot. . .come on lets go NOW, NOW, NOW!" I explained to her that it scares me when she holds her breath and that I was uncomfortable leaving the house with her right now. She told me "oh come on mommy we can take the car. . . I will sit in the pink car seat and I will not even hold my breath. . . Pilot really needs a green dress!" Ok, we ventured out and she was right she didn't hold her breath. She sat in the car with Grandmother while I ran in and got the green dress (t-shirt). I tell you Pilot is one lucky dog. We came home and of course had to put the new dress on Pilot. I think she really like this one because she didn't try to bite at it or try to take it off.

Avery was really tired now. She had been up for over 12 hours. She was looking anything to keep her awake and any little thing would set her off. She started talking about a night gown that she had seen at Toys r Us "mommy it came with a magic wand and it looked so comfortable. . . I knew when I saw it that I would just love to have that. . . . can we go get it now? but mommy I really need it for tonight. . . can daddy bring it home with him tonight. . . .but mommy it is just what I wanted." Ok, so why didn't she think of this before I went to Toys r Us today. She had a small episode but one I was able to talk her back using the nightgown. I then had to tell her that daddy didn't get finished with his meeting and he would possibly be home tomorrow night. I called Dan and let him talk to her that helped a little and then we struck a deal. She decided she would take all of her medicine and go to bed. We found a suitable nightgown and magic wand for her. She was in bed I thougth almost asleep when she yelled to the kitchen "what is taking my oreo pudding so long to get here?" She had oreo pudding. . . . . went to potty twice and then was ready for bed. Finally some rest around here. However I stayed up for a couple of hours more to get some housework done that I can't seem to get done when Avery and Pilot are awake. Overall today was a good day.

Thank you all so much for checking in on Avery. Please continue to pray for her total healing. Please pray for strength and guidance as we meet on Friday to decide whether or not a shunt would help. Please pray that she doesn't have any episodes while Dan is gone. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . . Gene Ann

April 6, 2008

Hello Everybody,

Wow, what a day. Avery slept in again (for her). She got up ate breakfast and then demanded her bath complete with hair washing. She had a very small episode before getting dressed. We handled it and thought oh boy here we go. After that though she was ready to go to church for the lasagna lunch. She wanted to go early and help set up. She enjoys setting the salt and pepper shakers on the tables. We loaded up all of the equipment, stroller, suction machine, snacks. . . it looks like we are moving in everywhere we are able to go. As we were unloading the o2 machine Avery said "I don't need oxygen mommy. . . why did you bring that with us. . . silly mommy I will not need that while we are here!" I had to explain to her that I brought it just incase we needed it like for an emergency. She just laughed and said "OH. . .ok!"

What a fabulous outcome from the lunch. The food was wonderful and the fellowship even better. They raised so much money for Relay for Life. We have an amazing church and we would like to thank everyone that helped out, organized and participated. Avery did a great job helping set up. It was hard for her to grab the shakers but she was able to get the job done. She was so proud of herself as we were too. The played a slide show that Dan created while we ate. Avery loved watching the pictures and she would say "wow that is great picture. . . mommy look at that picture. . .I remember that picture. . . . mommy look there is my polka dot dress I love that dress where is that dress. . . . hey that is a great picture. . . . I like this lasagna. . . you know Garfield eats lasagna. . . . I need more bread and butter!" It was so cute and she was very polite to most everyone that was there. Toward the end though she got tired and started ignoring people then it was back to watching pictures.

She was right by the way we didn't need the o2 machine but we had it if we needed it. Once back home she decided she wanted to sit outside for while. Pilot enjoyed sitting with us. Dan had errands to run and Avery called him while he was out and asked "Daddy will you go to PetSmart and get Pilot a dress. . . .I think she would love a dress like mine. . . .they told me at the animal shelter that they have clothes for little doggies and I think she needs a dress!" Well, he found one. We put the dress on Pilot and she has not messed with it or even tried to take it off. Avery will not let her take it off even to sleep. Poor thing. I think we will have to sneak it off and back on. She was very cute in the dress. Avery wanted to change to match Pilot so they could have their picture made together. We even went for a walk with Pilot all dressed up.

Me and Grandmother went shopping for just a little bit. Avery was watching movies and Dan was working on the website. I hope everyone noticed new pictures. He did show me how to change them so maybe I will be able to do that and change them a little more often. Now, I have to remember to take more pictures. Granddaddy had to go back home this afternoon so just Avery and Daddy got to hang out. We could tell she was getting tired so just Grandmother and myself went to the healing service at church tonight. It was a beautiful service. It is so wonderful to know that so many people are praying for us and Avery right now. We appreciate all of the prayers so much. Tonight was tough. Dan has to go out of town for a few days and Avery is not taking it very well. She had an episode when I told her. I was just talking to her about all of the fun stuff we were going to do and she lost it. It was a minor episode but she got really upset especially with me. It is like she blames me for so many things. . the medicine. . . the hospital visits. . .anything that isn't fun and good. I'm not the fun one no matter how hard I try. I'm the medicine giver, the clinic driver and the ambulance caller. I'm associated with all of these things and Daddy is not. He is the only one lately that can calm her down. I am so scared every time he has to go out of town but I understand and realize he has to work. I just know we are going to need as many prayers as possible Monday, Tuesday and Wednesday this week. Hopefully before Dan leaves tomorrow I can convince her that everything is going to be ok and that we will do many fun things while he is gone just us girls.

Thank you all for stopping by to check in on Avery. Please continue to pray for Avery's total healing. Please pray that the episodes stop. Please pray that the next few days go smoothly and episode free. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time . . . . .

Gene Ann

April 5, 2008

Hello Everybody,

Despite the rainy very dull weather we had a great day. Avery got up very early before 7:00 and seemed to be ready to get up. I knew this would not be a good thing so I just told her to lay there and rest. We kept things really quiet and she ended up sleeping until almost 10:00. When she got up she was ready to eat and then take a bath.

Grandmother went home for a little bit yesterday and came back today. Granddaddy also came for a visit. Tomorrow is the lasagna lunch at church and we are all excited about going. Avery spent most of the day today in the garage helping Daddy work on the car. Granddaddy, Avery and Dan washed and waxed one car. Yes, the rain stopped long enough for this to be done. Well, the waxing had to be done in the garage. Avery did so good helping. She was very happy to be outside. She sat in the stroller and held tools and entertained them. Pilot didn't like being inside and not knowing where Avery was. I eventually had to put her into her crate. It was too wet to let her outside and she doesn't do the best on the leash (but she is getting much better each time).

Tonight for dinner she wanted swamp rat kabobs. I use chicken but that is what Shrek and Fiona eat so that is what we had. She is so funny "I want to be just like Princess Fiona. . .what does she eat again." She only had one mild episode this evening. Me and Grandmother did not understand what she was saying and she got angry quick. We had to rush her to the bedroom and bump up the oxygen. A few quick puffs with the bag and she was over it and back to business. Thank goodness though for the first time in her life she didn't remember what it was she wanted. Well, I still can't figure out what she was asking for or telling us.

She did go to bed early which is a good thing. It allowed the rest of us to watch a grown-up movie "The Bourne Ultimatum." We all enjoyed it the Bourne movies are so action packed. It was nice to watch something other than Disney. She had a very busy day and one not spent in a bed. It was so good to see her up and out. It was also good to see and hear her laughing. We cherish the good moments and hold onto them as long as we can. Somedays are so great and those days keep us going. We know there are more of those days coming we just have to be patient. Avery is going to be better soon and all of this will be behind us.

Thank you all for stopping by to check on Avery. Please pray for Avery's total healing. Please pray that the episodes stop. Please pray for strength for all of us as we begin making decisions about various things regarding Avery's treament. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . . . . . .

Gene Ann

April 4, 2008

Hello Everybody,

A very good day! No episodes today. She wasn't very active at all today. While watching movies in the big bed she would fall over then she would say "I wiped out." She could not get herself up again so someone would have to help her back up. At one point I think she was doing this on purpose to get laughs. She didn't have enough energy to cook in her easy bake oven. By the time she got up (which she slept really late for her this morning 9:30) ate breakfast, got a bath, washed her hair, got dressed she just didn't have any energy left. It was time to sit and watch movies. One good thing is she is not just laying back and watching television these days she sits up on her own without any back support at times. She feels as though if she lays back she will fall asleep.

We had to go with Daddy to pick up his car today. After that we went to Walgreens via the drive thru. It was raining really hard and Avery started singing "Rain, Rain go away never come back until I say. . . mommy did you hear me. . . I made that up all on my own. . . .listen mommy!" She would say it over and over. We got back home and she could not wait to tell her daddy what she came up with in the car.

We came in and she decided to go back to the big bed. She watched another movie or two. Daddy took a nap with her of course she didn't nap. Avery and daddy asked for noodles with butter and peanut butter and jelly sandwhiches for dinner. Easy enough. I prepared just what they wanted fixed me something and we all ate. We drive Pilot crazy with our eating. She goes from person to person just waiting on a crumb to drop.

After dinner Avery and Daddy played video games for a bit and then she decided she was ready for bed. She yelled into the kitch "yoo hoo mommy. . .I'm ready for my medicine. . . .did you hear me. . . I'm ready for bed?" She took all of her medicine said her prayers and then decided she needed to change because she didn't like what she had on. While she was changing her daddy made a rather rude noise and Avery said "Daddy that is the dumbest thing I have ever heard!" We just laughed. She is now sleeping. Daddy is asleep with Pilot. . .this is the first time she has gone to bed in the big bed so we will see how long this last before she gets booted to the doggy crate. Hopefully this means that the high dose of steroids from Wednesday are out of her system now.

Thank you all for checking in on Avery. Please continue to pray for Avery's total healing. Please pray that the episodes stop. Please pray for strength and guidance as we begin making decisions about a shunt. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . .

Gene Ann

April 3, 2008

Hello Everybody,

Somewhat better of a day today. The night was so very long. Avery had to get up and potty every two hours. After the large dose of steroids and chemo this is usually how things go. So everything seems to be normal. Her heart rate did not drop like it has in some of the previous rounds so that was wonderful. I don't think the monitor beeped once last night. Her numbers were really good. I just had to get up with her every two hours. It is a wonder I heard her every time. Dan did have to nudge me once or twice and tell her "mommy is coming." She decided at 6:30 she was ready to get up and wanted to know what was for breakfast. Thank goodness Granddaddy spent the night because Dan had to go to work very early for meetings. Granddaddy went to Arby's to pick up her gravy biscuit and potato cakes. She was a happy camper. Lately when she finishes her last bite she is ready for a bath. Well, by 7:45 this morning she had breakfast and a bath complete with washed hair. Oh, and that is a new thing too. She all of the sudden wants to wash her hair everyday now. But you have to do it in the sink using the sprayer. She says "it doesn't hurt to do it that way mommy. . . my head hurts when I lay back in the tub!" Well, ok then.

After her bath she got in the big bed and started watching movies. She started the day off with "Alvin and the Chipmunks." She loves that one. She was so good all day. She would say things like "I went potty and I didn't even hold my breath. . . mommy can we make cake in my easy bake oven today. . . . mommy I want to make something out of my Shrek cookbook. . . . mommy can we play dress-up?" She was very chatty today. She still hasn't learned that I don't have bionic ears and that I have to be in the room where she is to hear and understand what she is saying. You can't just say ok to her you have to repeat back to her what her request is and she knows when you don't understand her. UGGGH!

She got the best birthday box today from her cousins in California. Thank you Kat, Mark, Lindsay and Riley (oh and Lady too) the Hannah Montana dress-up kit was a big hit! She loved everything especially the microphone and headset. Of course the blanket is on her bed now and she wrapped up in it immediately. Thank you so much. That was the biggest smile I have seen in days. She said "how did they know this is exactly what I wanted. . .now I will look just like Hannah Montana!" We had so much fun playing with all of the things.

Now, the day was going great so far and then it hit around 5:30. No nap today and she was tired, cranky and frustrated. I didn't get her underwear adjusted just right when I put her on the potty and it was major meltdown. I had to pick her up off of the potty and rush her to the princess bed. I cranked the o2 up and started talking to her. Some how I got her attention when I mentioned the easy bake oven. She knew that if she didn't breath that I would not let her bake a cake. Whew, we survived that one. I decided at that point she needed a break with some o2. Good in theory but get real at this point she is not going to nap. I called Dan and he still had things to do at the office. Grandmother was here but we both needed a little break. I was able to cook dinner but she had another episode before Dan got home still not a bad one and the easy bake oven worked again. When Dan got home she had another one while they were playing dress-up. This one was the worst one of the day but still the easy bake oven thing worked again. Well, we didn't make a cake today instead we talked her into going to bed. She was in bed and sleeping peacefully by 9:00. I hope that the large dose of steroids wears off by tomorrow. She really broke our hearts tonight when she said "I'm really ready to cut down on the steriroids because not only are they making me look bad they are making me angry too!" I just wanted to run outside screaming but I had to stay in the room and explain to her that I would see what we could do. Thank goodness Dan was home to help answer some of her questions. How does she know these things? Who has told her that she looks bad? What is really going on in her head? How do we deal with this? It is really sad that she knows the steroids are causing these things to happen. I know she is tired of being puffy and none of her favorite outfits fitting anymore. I know she is frustrated because she can't just get up and go to the potty by herself anymore. I know she is sick of being sick. I just wish there was an easy answer to all of these questions.

Thank you all for checking in on Avery. Please continue to pray for Avery's total healing. Please pray for strength for her and the whole family. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna (MRI was stable necrosis and no signs of tumor), Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . .

Gene Ann

April 2, 2008

Hello Everybody,

Today was a day filled with drama. First of all I had to get Avery up at 6:30 (she was still up at 12:00 with a bubbly nose). She was fine for a few minutes and then she went to melt down mode because Daddy could not go with us. We had to talk about it for over 30 minutes to calm her down. Finally, we were able to get on the way with a not exactly happy Avery. She was full of questions. One being "where are we going after clinic. . . but then where?" She is scared that when Daddy doesn't go that we will have to spend the night at the hospital. Mommy is the mean one that makes her stay (or at least that is the way she sees it).

We got to play therapy and Avery did really good. She stays in the play room with Terry and does great without mommy or anyone else in the room. We decided to take next week off. Avery needs a big break! We got to clinic and everything was going great. Avery let them weigh her, get her height, blood pressure, temp and head circumference. All of those things went great she is a real pro. We got to a room to be accessed and there was no blood return. Her port seemed to be clogged. They tried putting in 100% hepburn to loosen it up and hopefully get things going. This had to sit in the port for 30 minutes or more then they would try again. Well, that didn't work so they had to order TPA which comes from the pharmacy and is frozen so it had to thaw a little. Once they finally got this in it had to sit again for a while until they could try again. When they came to try again Avery had to potty. Finally they were able to get blood out! YIPPEE! By now you know it was very late (lunch time). They finally got blood to the lab. Getting results seemed like it took forever. They could not send Avery's chemo order to the phamacy until they looked at her labs. I'm not sure what time she got hooked up to the machine for pre-meds then chemo but it was somewhere around 1:30. Everything was going really good so far. By the time we got finished Avery was tired, hungry and beginning to get cranky. Ok, she did great for the most part. She did not want to talk to any of the doctors today she just wanted to watch "Alvin and the Chipmunks." It was hard to get much out of her. She also got that look on her face a few times like I'm getting to blow but nothing. Whew! We made it is what I was thinking! All day she asked for IHOP after we left clinic.

We made it to IHOP shortly before 5:00 pm. We ordered we got our drinks and before the food came we had to rush Avery to the car. Yes, she had a major episode and between me and Granddaddy we had to get her bagged. I had to do chest compressions this time because she was blue and not responding to just the bag. Yes, I had to have Granddaddy to call 911. Fire and Rescue just happened to be accross the street at Wal-Mart and was there in less than a minute. I had just gotten her back when they pulled up. I think that at that point I was only working on adrenaline but I was withit enough to tell them everything was ok and we just wanted to go home. Grandmother was in the restuarant and didn't know what was going on. She thought oh they will be back in just a minute and things will be fine. Then she looked behind her and saw the fire and rescue and ambulance by this time. She just asked for the bill and the food to go. They were wonderful and all came out to check and see how Avery was. I signed papers so that we could just go home. We headed for Prattville. Things were pretty much ok on the ride home. Dan had to go into the office today to get ready for a big meeting tomorrow. He said to call him when we got close to home. Mrs. Jennie picked Pilot up at Doggy Day Care for us. I don't know what we would do without her. Avery wanted to talk all the way home. I was driving faster than I should have so we had trouble hearing everything she was saying. But we made it home episode free. Once home we had to give her a bath by her request. I was getting the food out and ready when she had another one. Dan had gone golfing with his team that is in for the meeting tomorrow. I hated having to do this but I had to have Granddaddy to call him and tell him he would have to get home. We had to bag her and bump her oxygen way up to get her out of this one. After he got home she has been fine. We almost made it today. If we had not stopped at IHOP I think we would have made it home fine. She probably would have had one once we were home but if you look at it she got 9 mg of steroid before she got her chemo. I honestly believe now that this is all steroid related!

Ok now onto the visit with Dr. Reddy. She had talked with Dr. Wellons (the nuerosurgeon). They both feel as though a vp shunt would be a good idea for Avery. There is pressure build up in the ventricles (some adema present which would indicate pressure). However we can take our time deciding. I conferenced Dan in via speaker phone so he could listen and give input. This made it so much easier and I didn't feel like I had to write down everything and remember word for word. We will meet with Dr. Wellons on the 11th at 11:00. Dr. Wellons also said he felt like he could get some of the residual tumor but Dr. Reddy assured him we didn't want that due to where it is and what the outcome could be. She doesn't feel that is the way to go either. A shunt could do wonders but we will have to just see once it is in what it does. We did not discuss any of this while Avery was in the room. We can't talk about any of these issues around her lately. We can't even talk on the phone about anything while she is around. She freaks and asks so many questions. When Nadine (Dr. Wellons nurse practitioner) came by Avery wanted to know "where are we going after this?" She was scared that we were going to another appointment and then spending the night at the hospital. We just really need prayers right now about making this decision. We need prayers for Avery to handle whatever decision we make if it means a night or two in the hospital. We really need prayers for strength.

Thank you all for checking in on Avery. Thank you so much for your thoughts, messages and most especially your prayers. Please continue to pray for Avery's total healing. Remember to pray for all of our special friends especially Aaron, Bayleigh, Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . . .

Gene Ann

April 1, 2008

Hello Everybody,

Happy April Fool's Day to all! I just realized what today was. We have had a very busy day. The IEP meeting went well. We will meet again in late July to re-evaluate things since so much is pending right now. We all seem to be on the same page though so that is good. Avery will be in a classroom close to the nurses office. Her teacher will have a walkie talkie with direct link to the nurse. They will do some CPR training this summer for her teacher and others in the school. She will be allowed her stroller to ease walking and other strenuous activities. Potty seats and other things were discussed and seem to not be unreasonable. They all want this to be a great experience for all involved especially Avery. They all know that she will miss every other Wednesday. There were several people involved in this meeting including the principal. We are very pleased with everything and everybody. We feel very blessed to be where we are and have the schools that we have here.

As for Avery another day without a full blown episode. She did get very upset when she found out that Daddy is not going to clinic tomorrow. He has to go to the office seeing how this is the first of the month. It is too hard for him to try and work from clinic. He tried it a couple of weeks ago and it was very difficult. We have made several deals with her and hope they hold up especially when we go to leave tomorrow. Daddy is taking Pilot to doggy day care and picking her up for us. We have to leave very early in the morning. Avery has play therapy at 9:00 am. Hopefully it will not be too long of a day. She still doesn't understand why Pilot can not go with her to clinic. Maybe one of the doctors or nurses can explain this to her. She doesn't except my reasons at all!

Avery has had a very runny nose for the past two days. I called Allison yesterday and she said to give her clariton which we started immediately after getting off of the phone. This has seemed to help some. I hope that it is just allergies and nothing that might mess with her counts. Grandmother, Avery and Pilot went with us to IEP meeting. They sat in the car watching a movie while we had our meeting. Everyone came out to the car afterwards to meet Avery and Pilot. Avery told us earlier in the day "I'm not going no way am I leaving Pilot here by herself. . . no way!" We told her Pilot could go and she said "oh good now I don't have to worry!" She is so funny!

Pilot is doing better in so many ways but not so good in others. We have had to use the crate several times lately and she seems to be better when we do. She is very mischievious at times. She likes to chew wires. Dan wasn't very happy about loosing his phone charger. Now Avery's lights don't work on her red carpet. Hopefully though Dan can fix the red carpet as for the phone charger it's gone for good. We are working with her and being very patient and loving. We all really love the "silly mutt" as Avery sometimes calls her. We had talked about going to the beach for a couple of days and I asked Avery what about Pilot and she said "well mommy she can go with us. . .you know we have a leash, crate and everything she might need. . . .she has to go mommy!" We are still undecided about going but will be going sometime real soon maybe when we can all spend four or five days. Tomorrow is clinic and hopefully I will get more information about a shunt and from the MRI. I will post as soon as I can.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that the chemo does what it is needs to do for her. Please pray that she continues to regain her strength, endurance, and mobility. Remember to pray for all of her special friends especially Aaron, Bayleigh (MRI stable), Caitlin, Erin, Janna, Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . .

Gene Ann

March 31, 2008

Hello Everybody,

Today was another episode free day. She got upset one time with me but she kept herself from having a total episode. We decided that some rest time with oxygen at that point would be a good idea. We have had a deal for several days now. If she doesn't have an episode she can have "Alvin and the Chipmunks" tomorrow. Everyday she has told us "I didn't even hold my breath today do I still get my movie." When she had this almost episode she said "do I still get my movie because I didn't hold my breath." Hey, if this works I will make a deal a week. We also think that the zoloft has finally gotten into her system and leveled off things for the most part. Each day in the past four or five has gotten so much better.

Granddaddy and Aunt Sandra stopped by on their way back home. Granddaddy brought Avery her favorite breakfast right now which is Arby's. She ate pretty good, took all of her medicine and then went back to sleep. She took a two and half hour nap. It was so nice because I got a nap too. We had a rough night as far as Avery's pulse ox beeped a good bit of the night. It would dip by the time I could hit the reset button she would be back in the high 80's or low 90's. This happened on and off for a good bit of the night. Then she had to potty a couple of times. Then I had to get Dan up one time with us just because I was exhausted and in need of tums. We both got naps and we both felt so much better when we got up.

Tomorrow we have to go to school to finalize Avery's IEP for next year. I think they are all going to be shocked at how well she is doing with ABC's and big words. She is so funny! She doesn't want to go to school unless she can stay in her stroller. I am concerned about this stroller thing. That is her safety zone and she wants to just sit in there wherever we go. When she goes to play therapy she wants the stroller, clinic same thing! I don't think they are going to go for this next year in kindergarten.

Upcoming events: this coming Sunday is a lasagna lunch at our church Trinity United Methodist for Avery's Army relay for life team. We are very excited and hopeful that we will be able to be there. Saturday April 12th will be Walking for Smiles at Regions Park in Birmingham for Camp Smile A Mile. We had planned on attending this event but have decided against going. If you would like more information on this event please check out the link to Camp SAM in the bottom left corner. April 25th will be Autauga County Relay for Life. Avery will be the honorary chairman. We will be walking with Avery's Army. If you would like join Avery's Army for this event please contact me and I will send you the information. We would like to thank Mrs. Pam for getting this team together and being the team captain. It looks like April is going to be a busy month.

Thank you all for checking in on Avery. Please continue to pray for Avery's total healing. Please pray that she continues to not have any episodes. Please pray that regains her strength, endurance and mobility. Remember to pray for all of our special friends especially Aaron, Bayleigh (had her MRI this morning at 10:00 but will get the results on Tuesday), Caitlin, Erin, Janna (will have her MRI Tuesday please pray for good results), Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . .

Gene Ann

March 30, 2008

Hello Everybody,

Today was another incredible day. One more episode free day. She started to get mad a time or two but stopped and repeated what she wanted or needed. Her frustration level seems to be much better this weekend. We are still hoping that the trend continues.

We had a wonderful brunch today. It was so nice getting to visit with Natileigh, Britton, Grandmother, Granddaddy and Aunt Sandra. Of course Avery did not want what mommy fixed so she ordered out (Arby's) for breakfast. She knows what she wants. Avery wanted to watch "Enchanted" with Aunt Sandra so all of the girls watched that together. Daddy and Granddaddy decided to play golf. They were able to play again without being called. I stayed in pj's until after 4:00 trying to get things done. The time just flies by when you are busy. I finally got to take shower while Avery, Aunt Sandra and Grandmother watched "Shrek." We starting using the stroller in the house this weekend. Avery decided she wanted in the stroller. While I was taking a shower she fell asleep. This was great because I just rolled her into the bedroom and hooked her up to everything. Too bad she did not stay alseep though she woke up while attaching the oxygen clip to her purple valve. Ok, so she got a ten minute nap. She says now "oh come on mommy I took a ten hour nap!" Oh, how I would love a ten hour nap!

She decided to stay in the bedroom and get a little oxygen. While she was doing this and watching her shows we decided to watch a chick flick that I had rented from netflix. "The Holiday" is a wonderful girl movie. We all enjoyed it. The boys got home just in time to see the end of the movie. We had dinner and then everybody was ready for bed. Except the boys had to take down the frame for the tent and do some loading and putting away. Granddaddy turned his ankle over on the golf course. Dan's knee is bothering him. What a pair!

Pilot has had a few adventures this weekend. Friday she ran out when Grandmother opened the back door to come back in from outside. We looked out and there she was sitting up on the chair looking in like here I am please let me back in. She got out twice on Saturday. She thought it was a game to run from all of us. She is so fast and was running in circles. I got scared because as a child we lost several dogs to the highway. I had to go inside until Dan could catch her. She got out twice on Sunday while everybody was loading. I think it took four of them at one point to get her. She never really gets out of our yard but if she does we better have on our running shoes. She is getting very adventurous. We had to put her in her crate for some of the party. The rest of the time she spent on her leash outside or being held and petted. She really is a good dog. She is doing much better with potty training. We just have to really watch her. Tomorrow we are staying home. Dan is working from home. It will be quiet around here. Avery is looking forward to checking out more of her birthday presents. I'm sure she will keep all of us busy!

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that she continues to regain her strength, endurance and mobility. Remember to pray for all of our special friends especially Aaron, Bayleigh (is in the hospital with some type of infection she may have her MRI Monday instead of Tuesday), Erin, Janna (has an MRI on Tuesday), Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina. Also, there is a new friend we just learned about. She is in middle school here in Prattville. Her name is Caitlin. She has been diagnosed with cancer (not sure what kind). Please pray for her and her family as they begin a new journey. I will post more on Caitlin as I receive more information.

Until Next Time. . . .

Gene Ann

March 29, 2008

Hello Everybody,

One word INCREDIBLE! Today could not have been any better. Everything was done with a few minutes to spare. It all turned out so good. The cake was beautiful. It was all just perfect.

Now, for Avery's day. I will go ahead and say episode free! Some of the highlights of Avery's day would be the four special phone calls she received early in the day starting at 10 and receiving one every thirty minutes until 12:00. The first call was from Cinderella. The second was from Snow White. The third from Sleeping Beauty. The last call was from Mickey Mouse. Her face would light up with excitement and she would giggle. She loved this so much. They all wished her a happy birthday and they all new something special about her and her party. It was wonderful and if anyone wants to know how to get in touch with all of these special people just e-mail me I have direct access. It was so much watching her that I think we will be sending some of our special friends special calls for their birthdays.

So it was 60% chance of rain (thunderstorms). A decision had to be made about using the tent out back and we decided not to put it up. We did put the beverage station outside and the guys did the grilling outside. We thought the storms had passed us by when it was still dry at 6:00 pm. But by 8:30 it started to rain.

Avery had the best time at her party. She decided she was ready to eat at 5:05. So she was the first one to get to eat. Thank you Mrs. Pam for feeding Avery. She ate all of her hotdog, chips and a cupcake. Her philosophy being "why should I have to wait I've waited all day. . . no make that all week!" She was so right. We didn't make her wait. The funny thing was she originally wanted chili because I told her I made Princess Fiona chili out of the Shrek cookbook. She took one bite and I knew she did not like it at all. She looked at me and said "this taste like really bad medicine. . . I think I will take that hotdog now!" Ok, that worked for me. Everything was really good and the pizza dip seemed to be the big hit this year. Everything turned out so good!

Avery loved all of her gifts and visiting with her friends. She loved seeing Cade, Colton, Alex, Hunter, Abbi and her new friend Charlotte. She also enjoyed seeing baby Caden and baby Xander. It was just the most wonderful birthday party ever. Avery's most favorite part of the day was when she pulled the magic string on the pinata. I wish everybody could have seen the look on her face. We are so blessed to have such wonderful family and friends. Thank you all for making Avery's party such a wonderful event.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that the current trend of no episodes continues. Please pray that she continues to regain her strength, endurance and mobility. Remember to pray for all of our special friends especially Aaron, Bayleigh (has an MRI on April 1st), Erin, Janna (has an MRI on April 1st), Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . . .Gene Ann

March 28, 2008

Hello Everybody,

A day of work. Avery has done really good and has tried to have a couple of episodes but nothing too terrible. We have been really talking to her about her party and what will happen if she has one of those then. We don't want to have to send everybody home.

Ok so we have it all planned now. Avery got a red carpet with dressing room for her birthday from mommy and daddy. The red carpet lights up and plays music when it is motion activated. We have it at the front door with a life size Hannah Montana cut out. So everyone will get to have a red carpet entrance. I think it is cute but daddy on the other hand thinks it is dumb. We will then head out back for the kids to play. Of course it may rain so we will have the play room ready upstairs if that is the case. We have a simple menu planned. I was able to get most everything done today cooking wise. I have rolled out tamale balls, made chili for hot dogs, fixed dips it is all done except for the brunch casseroles for Sunday morning. Yes, out of town guest come back over on Sunday morning for brunch.

We are anticipating 60 people for the party. There could be more or less but we have planned for at least 60. Dan has a huge list of things to get tomorrow. Granddaddy and Aunt Sandra will be here early. I have to get the dessert table decorated and a few little things done. I have pulled out so I will be up late putting things back in there place. It has been nice having something to get done and not sitting around doing nothing. I just hope that Avery feels good and has a good time.

Thank you all for checking in on Avery. Please continue to pray for her total healing. Please pray that the medication starts to work and the episodes stop. Remember to pray for all of our special friends especially Aaron, Bayleigh, Erin, Janna, Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian, and Tina.

Until Next Time. . . .More birthday party stuff to come. . . .

Gene Ann

March 27, 2008

Hello Everybody,

We had a wonderful day. Dan worked from home. I started working on birthday party stuff while Grandmother and Avery hung out. Avery watched several movies and just really seemed to enjoy the day. I did sneak a way and get a haircut. I did it I cut it all off. I hope I can fix it tomorrow.

Avery got special surprises in the mail today. First off thank you fairy Abby. You are wonderful and know just what to send Avery. She loved the outfit for her bear. She got a bear last night at build a bear so it was perfect. She can't wait to go back and get more clothes with the gift card. The Hannah Montana card was great! We have all enjoyed listening to the song. Thank you so much! Thank you Janna. Avery loved the card. You are so sweet to think of Avery. She can't wait to spend her cash. I'm sure she has something in mind already that she wants. Thank you and we hope you get great MRI results on April 1st. Later in the day a box came from the Moore family. Wow! Avery loves the Hannah Montana bag. I told her she would need to hurry up and start using it before mommy took it away from her (just kidding). "It is totally cool mommy!" That is what Avery said. She also said "how did they know just what to get me!" Thank you, thank you, thank you!

Granddaddy came for a visit to help get some things done for the birthday party. We are going to grill hamburgers and hotdogs so we needed to borrow another grill from Dan's mom and dad's house. They got the grill and we are good to go. They also got down the extra tables from the attic. Granddaddy brought his big tent that he uses in the summer for special events. It is really big and we decided to set it up out back in case of rain. I think it is 50% chance right now. Hopefully that will change tomorrow. We would like to get the jumper out but I don't know if that would be fair to Avery. She would just have to watch the kids jump and what kind of fun is just watching.

Synetta and Blake stopped by for a visit. They brought Avery her birthday present. Thank goodness we have a new Hannah Montana dvd to watch. Avery loved the dvd and has already watched it twice I think. Thank you for all of the goodies she loved everything. We enjoyed sitting out back for a good while this afternoon. The weather is perfect. We really enjoyed watching Pilot. She is quite the entertainer. We would give her a treat and she would dig a hole put it in and cover the hole. It was so funny. Avery went all day without an episode until about 9:00 pm when we were outside getting ready to roast marshmallows. No one could understand what she was saying and she had a small episode. She was very tired and had been patient with us long enough. She waited longer than she wanted for dinner and even longer to roast marshmallows. She is getting better but she still has such a long way to go. It just takes it all out of us all. We finally got her to bed and I stayed up way too late getting things ready. I got so much done but have even more to do tomorrow. Everything I started to make tonight I was out of something so nothing was prepared tonight. I just cleaned. I will probably do it all again tomorrow. Thank goodness the menu is very simple this year. I took anything complicated off of the menu a couple of weeks ago.

Thank you all for stopping by to check in on Avery. Please continue to pray for Avery's total healing. Please pray that the medication works and the episodes stop. Remember to pray for all of our special friends especially Aaron, Bayleigh, Erin, Janna, Keaston, Lt. Mangrum, Nurse Kelly, Aunt Sandra, Sean, Sebastian and Tina.

Until Next Time. . . .

Gene Ann

March 26, 2008

Hello Everybody,

Happy Birthday dear Avery, Happy Birthday to you! I am still in shock that five years have gone by so quickly. We are so proud of you sweet girl you are the bravest little girl that mommy and daddy know. We love you so very much and hope that today brings all good things even if we have to spend the day at clinic.

So on to what we did today. We got up early to have breakfast. Avery ate a big breakfast! She took all of her medication and then decided to take a quick nap. I think daddy took a nap and Avery just pretended. We all got ready and headed toward Birmingham first dropping Pilot off at Doggy Day Care. We were over half way there when we had to pull off of on to the side of the interstate to calm Avery down. She got upset because we didn't understand what she was saying and before Dan could pull over she was holding her breath. We got out gave her some puffs with the bag suctioned her and then played fruit basket turnover in the car. Grandmother and Daddy swapped places and mommy drove the rest of the way. This put us behind a little but we made it only two minutes late.

Avery did great with play therapy. She loves playing when someone gives her their undivided attention. At home we can do this at times during the day but there are things that have to be done too. After play therapy we headed to clinic. The girls in triage sang Happy Birthday and gave her a cool Barbie balloon. Then everybody came into her room and sang. She got a great princess back pack and balloon from nurse Christie that shares Avery's birthday. Ok so far so good. But now it was time to head upstairs and wait for MRI. We got up stairs and they of course were running over an hour behind. Avery was beginning to get very cranky and very hungry. All she could talk about was food. It was hard but we made it through. The sedation nurses got Avery a set of Cinderella magnetic dress-up dolls, a pen and card. It was so sweet. They were trying to make-up for being so far behind. Avery was just ready to get things over with!

Dan took her into the scanner. He had on less metal than I did so he got the job. As the doctor was shooting the magic milk into her noodle she had a mini episode of some type of apnia. Her stats dropped really fast but them came right back up. Ok Dan didn't stress but the doctor was pretty much freaked out. That has never happened before with any other patients. Long story short this service will no longer sedate Avery. She will now have to go through general anesthesia. Oh boy! I believe from our experience before with this service it is through one day surgery and it means an even longer day. Hopefully we can still use magic milk it seems to be the mildest of the sedation drugs. Ok back to the MRI story she was awake and talking. She was ready to go and eat. Well, by this time everybody was gone from clinic. Clinic brought her a birthday cake so she could have cake after her MRI she was very excited that she could have cake with her chinese dinner.

We went to the Dragon chinese restaurant for egg rolls, egg drop soup, lomein and shrimp. That is what Avery wanted. We were in the middle of dinner when my cell rang. I didn't get it so I called it back. It was Dr. Reddy. With all of the noise from the restaurant and trying really hard to conecentrate on what she was saying I had to walk outside. Ok this freaked everybody out at the table. Grandmother turned gohst white, Dan came running outside. I was finally had to give him a thumbs up to get him calmed down. They thought I looked like I was getting ready to cry. Funny how people read you differently than what is going on. I was concentrating and trying to hurry to miss what she was saying. Well, the news is stable for the most part. There are a few issues with the contrast and it seems she was laying at a different angle than last time. If there is any growth it is minimal. Right now Dr. Reddy wants Dr. Wellons to take a look and see what he thinks about a shunt for long term care. This could possibly get her off of steroids but we have to weigh all of the pros and cons first. There seems to be some fluid in the ventricles and this could be causing alot of her problems right now. As I learn more and can sit down and talk with Dr. Reddy face to face (next Wednesday at clinic) I will update with more detailed information. Oh how I wish I would have handed the phone to Dan! We did finish dinner and Avery ate great. She loves her chinese food. After dinner we headed to the Galleria for Build a Bear. Grandmother and Granddaddy let Avery build a bear for her birthday. She picked out a dark brown bear then dressed her like Hannah Montana with wig and all. She named her Hanny Montany. That is what Jackson calls Miley in one of Avery's favorite episodes. While they were in BAB I ran over to LibbyLu to get Avery a few things she wanted (silver scarf, black microphone and sunglasses). When I got back they were almost ready to go. Avery loves build a bear! She had so much fun. She just wasn't up for a make-over at LibbyLu today. We are going to wait and do that one day after clinic. Avery was ready to get home and check on Pilot. Jennie picked her up and took her home to her crate until we could get home.

We made it home a little after nine. Avery was happy to see Pilot and boy was Pilot happy to see us. Although I have to admit she was very good and wasn't mad at us like she was last week. I think she liked doggy day care which is a good thing because she will be spending alot of time there in the future. Did you hear all of us scream with excitement tonight? Avery's new princess fiona costumes finally got here. She was so excited! She had to try them on and model them for us. Then she said "I'm ready for bed and I'm wearing this green dress to bed. . . . I'm never taking it off. . . . I look just like princess fiona. . . . how do you like it!" We got some really cute pictures of her with the biggest smile. It is really sparkly and now everything is covered in sparkles. Maybe that is what we needed a little fairy dust doesn't it make everything better.

Thank you all for checking in on Avery. Thank you for your thoughts and most especially for your prayers. Thank you all for the wonderful birthday messages. Avery has enjoyed hearing them all. Please continue to pray for her total healing. Please pray that a plan is made and that the medication works to co