An amazing Christmas surprise for Em and Kylie...

Santa came to town. The Iron Warriors Motorcycle Club made a special motorcycle Santa run for the girls to bring presents. Typically the club donates to somewhere like Shriners but this year chose individual children to play Santa for. Emily of course has short gut and is TPN dependent and Kylie has the same diagnosis. On Dec 17th, Santa rode his Harley along Whitney Dr Bossier City, LA accompanied by 10 other Harley's carrying all Santa's very special elves. Emily didn't even wait for Santa to get off his bike before she was running to him. And once standing and as he walked toward the house, Em was close on his heals yelling "Pick me, pick me", a line she learned from Polar Express. We had a sea of people there to greet Santa and his Elves and had the best time. Santa brought Em an iPod touch and barbies and a hat and scarf while Kylie received a baby of her dreams and all the trimmings to go with it and a hat and scarf. It was a great day for two very special little girls and we enjoyed watching them have such a great time. Thank you Santa and the Iron Warriors.

It's finally over...

the adoption is complete and Emily Grace is officially our daughter. She decided a while back that the adoption we were telling her about was going to be her wedding. She asked on Sunday if she could have flowers for the wedding so we bought her some roses. When the judge told her that we were all married she got very excited. It's hard to believe that the adoption is final. Nothing changes but everything has changed. We are so happy to have this precious child in our lives and our family. Our next project is to get our little family moved to TX. (by the end of the year). Merry Christmas and Happy New Year.

It's getting closer...

We signed the paperwork at our attorney's office on Friday and the petition for adoption was filed with the court that same day. It looks like the week before Christmas will be when the adoption is finalized. Emily says that we are getting married (the three of us). She is excited about the adoption but just as excited, I think, to wear her pretty new dress that day.

Amongst all that we have to finish packing up the house and get moved and this house cleaned by the end of the year. Sounds simple enough but throw in the fact that one of us lives in Texas during the week and the other works 12 hour shifts and time gets a little tighter. And we also have Emily's social schedule. She has 2 Christmas party's to attend and a special presentation planned for here at home.

Today she received a special friend sent from the North Pole via Grandma and YaYa and Aunt Lynn and Uncle Jeff. Dave the Elf (on a shelf) has moved in for the holiday season to keep an eye on Emily for Santa.

So for now we wait (impatiently) for the adoption to be finalized so we can move to Texas and start the next chapter of our life together. Will update again after the completion of the adoption.

Theresa

2 hospital visits in a week...

not the record we we going for. This time the dreaded line infection that everyone told us would come finally made it's way around to Em. Almost a full 22 months with us and no line infection. On Saturday October 29th we took Em into the ER running a temp of 103. She was shivering and lethargic. She was admitted to PICU around 2:30am on Sunday morning and by that afternoon we knew that it was a line infection. We have been told since day one that it would happen but felt blessed that it just hadn't...until now. We started second guessing ourselves and our protocol. Emily's Dr doesn't want us to change a thing. He said we should celebrate the 22 month success that we enjoyed and continue in our vigilant care of Emily and the care of her line. Still the question weighs on our minds of what went wrong, could something have been missed or done differently?

While inpatient she was finally able to meet and spend some time with Kylie, another short gut kid. They trick or treated in the PICU hallways and once moved to the Peds floor, were able to get together in the playroom. Emily was discharged on Thursday November 3rd from the hospital. We continued her IV antibiotic treatment at home thru Sunday. She is doing great now (other than the diaper rash from the antibiotics).

We found out today, that all our paperwork was mailed to our adoption attorney yesterday. Next step....filing the petition for adoption with the courts and getting a date set for the adoption. So hopefully this can be done sometime in December and we can spend Christmas in the house in Texas. Until next time...

Theresa

It's been a busy week...

Emily started on Sunday being much more quiet than normal. We had a small birthday party for Vinny (our oldest grandson). We took him to lunch then home. On our way to Target Emily started vomiting extreme amounts 4 times one right after the other. We came straight home and bathed her and she seemed better. Later in the evening she had several dirty diapers that appeared to contain blood. In the morning the same thing but worse as far as her diaper. We took her to Dr Boykin and she was admitted overnight for testing. All tests that were done came back normal. She was discharged on Tuesday and received her flu shot at that time. On Wednesday she ran a low grade temp and I assumed it was from the flu shot. She woke up Thursday morning with a temp over 100. No big deal, gave her some motrin and within 2 1/2 hours her temp was up to 103. The Dr's seem to think it is still flu shot symptoms. While the temp concerned me (she's a kid with a central line after all), the main concern was her constant complaint of headache. Tonight her temp is down and I am so hoping it stays that way.

Still nothing on the adoption. I guess we'll end up paying another 2 months of two house payments and utilities and hope all is settled before Christmas. That will be it for this time. Hope to have a court date with the next post.

So much to happen...

yet nothing going on. We are still waiting on a date for Emily's adoption to be completed. We are making small attempts on moving things over to our new house in Texas. We can't completely move until the adoption is final. Spending money on two households is getting old really fast.
Emily's health has been doing very well. We hear once in a while that her belly hurts but nothing has been out of control and doesn't last long. Labs are still stable and weight is increasing as it should be. The Doctors are happy with where she's at medically.
We have been enjoying some of the cooler weather and taking Em to the park every once in a while. She has recently decided that she no longer needs naps, but that's not working out to well for her since she starts looking and acting drug out by mid week.
We have had to start buying clothing again since all of last years things are long gone. Em is in size 5 overall sometime into 6's for shirts or dresses. Into 8 1/2 to 9 shoes.
I will update again when we get a date for the adoption, we are so looking forward for that day.

It's August already...

It's still hot, too hot, and a lot of changes happening. Dave is enjoying his new job and Emily seams to adjusting well to his being gone during the week. We Skype or FaceTime each evening. There are lots of hugs each week when he gets home.

We have started introducing food to Emily. At first she was very adamant about not putting anything in her mouth but is now starting to come around. To date her favorite is peanut butter. She has tried jello, bacon, macaroni, gerber graduate puffs, syrup, jelly and soup. Still not a big fan of trying new things but gives in once in a while. Everything but the peanut butter, syrup and jelly has been spit back out.

This month Christina has moved to Utah and Grandma (my mother) moves back to Florida, Dave is back and forth between Texas and here and at some point Emily is supposed to start her home schooling. Life is crazy right now but we'll get thru.

That's all I have time for updating right now. So until next time...

Theresa

About 20 miles from home...

and this is when Em decides to vomit. She had complained on and off during the day about belly pain, but nothing extreme just comments about her belly hurting. So we made it home, started TPN, gave her a bath, changed her bandage and made it into bed. About 2:30 am she woke up crying that her belly hurt. Topical Motrin applied and diaper changed, she went back off to sleep quickly. And then 4:00 am came with crying and screams of pain so on we went to the ER at Sutton Childrens. There it was confirmed that after a wonderful 5 month hiatus, pancreatitis was indeed rearing it's ugly head with a Lipase of 807. So they D/C'd her TPN and started some IV fluids. Once again in the ER she vomited. Yes she was admitted into PICU. Day 2 of her stay the lipase decreased to 458, yay! Day 3 the Lipase was back up to 896! That was a first to have the number bounce back up. She complained throughout the day of discomfort and pain but slept throughout the night without complaint. No pain medications were given thru the night. Hopefully today is the day she goes home. So ready to get home and get the house straightened away from the trip. Dave starts his new job today in Texas so it would be good to head home and give Em some sort of normal. So long until the next post.

What?

So last week we made a trip to University of Nebraska Medical Center for Emily's yearly visit. On Thursday she had labs, an ultrasound and then we saw the Dr. We were so not expecting to hear what the Dr. had to say. Apparently Emily is doing to well to receive a transplant at this time. What? Isn't that what we have spent the last 19 months doing, is trying to get her into the best possible condition to handle this transplant? It took a little while, if not still trying to process this information. So hard to understand that the docs there want her to be declining in health before reactivating her on the transplant listing. Wouldn't it make more sense to let her fight the horrible effects of transplant while she is healthy and strong. After waiting for this long for the transplant call to come, of course we worry about waiting until her health starts declining and then have to wait for who knows how long for an organ/organs to be available. I guess we will wait and enjoy everyday that we have with our girl in her "too healthy" condition. Nebraska would also like to see her start to eat real food. Again being hesitant we are concerned about bouts of pancreatitis and diarrhea. With so much info to process, we headed home on Friday, and we almost made it home when...

This is crazy...

it's 3:30am and all three of us are wide awake. I guess we are just all excited about getting our trip to Nebraska started. It's a good thing Dave is driving so Em and I can sleep later when the excitement of the trip is over and the reality of the long drive sets in. All Em's appointments are on Thursday, except for the liver biopsy, which is tentatively scheduled for Friday. We are so hoping that they will not have to do the biopsy. I will update more once we are through Em's appointments. It's time to get this day started.

Coming up...

We will be leaving on the 13 of July to head up to Omaha for a mini re-evaluation. Em is scheduled for ultrasounds, lab work, a visit with the Dr. and possibly a liver biopsy (we are hoping not). We could be headed home as soon as Friday the 15th but if the biopsy has to be done we won't head home until Sunday. Just an update to try to keep up with the blog a little more frequently.

We are finally here...

in the current month of July 2011.

We have had a bit of an issue that started on Saturday the 2nd. Emily has had some general overall puffiness over her body and her urine output has been significantly less than normal. Her sheets are usually soaked on a daily basis when she wakes up, but that has not been the case since Friday the 1st. She is having fewer wet diapers and not using the potty when she tries. We made a visit to the ER on Saturday night/Sunday morning, but nothing showed up in any of the tests that were run. She is acting fine other than the fact that she is more tired than normal. She has been staying quieter and making complaints about being tired. The puffiness has decreased for the most part but the decreased output continues. She has been on IV fluids since Saturday so we will see how things go once she is back on her TPN tonight.

On a good note, Em weighed in at 37.4 last week. She is doing so well in the area of growing. We have had to go through her closet and dresser once again to move out the old and make room for the bigger sizes.

We plan on a quiet night at home for the 4th since it is still to hot to take Em out. But we will read our books and start TPN and be happy just being together.

Theresa

June 2011...

Here we are in June and things continue to move forward. Emily has not been hospitalized since February after our trip. She has been in rare form and just as happy as can be. She loves having fun although most of that has been inside due to the extremely hot weather.

On June 13th we had a Family Team Conference with the state. Emily's case has now been changed from Foster Care to Adoption. We met our new adoption case worker Melinda Miller and her supervisor Phyllis Jones and said goodbye to our foster care case worker and supervisor Victor Akamin and Annette Jefferson. We signed 4 copies of our agreement to adopt Em. We would have signed a million more if they had wanted us to. This precious girl has become part of our hearts and family already. Melinda made her first official visit to our house that Friday the 17th. We will see her at least once a month until adoption is final but she says from here until adoption day it's basically just a waiting game for paperwork to be compiled, completed and presented. We will wait patiently. Melinda says the adoption should be completed by December if not sooner.

On June 30th Em had her final evaluation with the school board. They said what we already knew and that was just that she was a very smart little girl. She was evaluated as average to above average in her knowledge based screening. They found no reason for any motor skills therapy. They did say that her ability to stay on task needed work and they will do just that, as she HAS been approved for in-home teaching sessions through the school board. From here they will turn it over to the teachers who will assess her areas of need and set up a plan for her. We will have one more appointment prior to school starting this year. She is excited about having school at home and we are excited for her. We just can't take the chance of anything happening with her line or the chance of infection, when we know that being pulled off the transplant list for 3 months is the result of that sort of complication. We know she is smart, but we don't know exactly what the schools are teaching, so we don't want her to fall behind.

Theresa

Now on to the month of May...

The beginning of the month was pretty quiet. Then on the 21st Emily turned 4 years old. She has become a very self confident, bubbly, happy little girl. She had a party at the house and enjoyed herself so much more this year, than last. She is learning to ride the bicycle she got for her birthday and plays almost daily at the desk she bought with all her birthday money. She has so many people that love her in her life and she knows that.

On May 24th we started the screening and evaluation process with Bossier Parish School Board to see if she qualified for in-home Pre-K instruction. She went back on May 26th for her hearing test. (this evaluation process will continue in the month of June)

On May 31st the court accepted the parents surrender of Emily for adoption. From that point we were on the move toward adoption. (continued in the month of June)

So the month of May was definitely positive for Emily and for us.

Theresa

Lets move on to the month of April...

Although there were no new developments in Em's life as far as her health is concerned: ie:word from Nebraska, no hospital stays or even trips to the ER, April was a very exciting month for us.

Emily's family made the decision to surrender their rights to her in order for us to adopt her. This occurred on or around the 15th of April. We were thrilled of course to learn that we would be able to make her a permanent part of our family and thankful to her parents for making this decision. We will continue to extend visitation to them so that she can keep that relationship going and also to enable her to know her siblings. So excited for this.

Back to reality...

February 10th:

Fresh off Em's trip to Disney we had to make a trip to the hospital for yet another bout with pancreatitis. We stayed inpatient from the 10th thru the 14th and discharged that day. That was so scary after just making that trip and then she gets sick. But all was well after this brief stay in the hospital.

Since I'm posting this out so far from the real time it happened I can tell you that March was pretty much uneventful. No hospital stays or visits to ER. Just our happy girl carrying on about her business of having fun and being a kid as much as she possibly can. Emily did find out that she had a new baby brother during March.

Monday February 7th:

Today is check out day at GKTW. We started the day with a trip to the theater for another visit from Mickey, Minnie, Goofy, Pluto and Belle. Again Em was relentless with Pluto and his tongue. This was the day that Mickey and Minnie signed Em's stuffed Mickey on his feet. So thankful that someone told us that this was happening so we didn't miss it. We headed back to Winter Haven after we checked out from GKTW. We went back to Grandma and Yeah-Yeah's to visit with them. That evening we went over to Sal and Suzie's house for a visit. Early Tuesday morning we headed out to make our long trip back home. It was a great trip and one that Emily has not and hopefully will not forget.

Theresa

Sunday February 6th:

We made this day just a quiet layed back day. It rained some in the morning, but we did make a trip to Sea World for a little bit so Em could have that experience. While we were there she got to feed and pet a dolphin. A bird flew down and stole a fish out of her hand that she was trying to feed to the dolphin. She had fun being just being that close to a dolphin. We went to the Shamu show so she could watch the whales and visited a polar bear exhibit but never saw the bear. She also saw penguins and manatees. We didn't stay long just because Saturday was such a big day for her. We had dinner with our friend Todd at Downtown Disney and walked around there for a bit. Just a quiet day to catch up on rest.

Theresa

Saturday February 5th:

Our morning started off with breakfast with Uncle Rick at the Gingerbread House. We took Uncle Rick in to show him where Em's star was placed, then we went to Keaton's Corrall to enjoy another horseback ride. Again Em loved riding the horse. From there we stopped by the Candyland playground and played for a bit. We met up with Aunt Cyndi and all headed off to Magic Kingdom. We had a great time watching Emily interact with the characters and riding on rides and she actually got to see the electrical parade that evening. Just before the parade Em started vomiting every 15 minutes or so for an hour. Once the parade started she did fine. Just before the parade started Uncle Rick and Aunt Cyndi took Em up into Cinderella's castle, then they came back to watch the parade. During the parade Snow White danced right up to her and blew her a kiss. After the parade we watched Tinkerbell fly and watched the light show and fireworks. We went up to visit with one of Jamie's former co-workers and then it was time to head out. We had a great day, even though it was a long day.

Theresa

Friday February 4th:

Our day started at GKTW with breakfast and a visit at the Mushroom house from Curious George and the man in yellow. Today was the day we went to Epcot. We had our picture made in front of Spaceship Earth and then started our way through the park. We went to Nemo and Em loved the aquarium area and would have spent the day in there looking at fish and dolphins if we had let her. We traveled through the countries but Em slept through most of them and missed most of the character sightings because thats where they were. We visited the Courtesy Room for emplyees that they also extend to the Make A Wish families. Em had a great time there because the woman at the desk let her play with the computer tablet that she could change the colors of the floor with. There was also a wall size touch screen computer there that she played with and changed screens on. Over all it was just a quiet day and we enjoyed the leisure of taking our time. On our way back to GKTW we made an impromtu stop at one of the helicopter ride bussinesses. Dave and Em took a short ride over the city (while I stayed on the ground nursing my panic attack). Dave said Em had a great time and enjoyed seeing the sites and wasn't scared a bit. When we got back to Em's castle, Uncle Rick joined us with the plan of going back to Magic Kingdom on Saturday. But on Friday night at bedtime GKTW mascots (giant rabbits) , Mayor Clayton and Miss Merry, came to Em's castle to tuck her into bed. She was so happy to have them there, but told them she wasn't ready for bed. They convinced her to hop off to bed. They danced to her music in her room and gave lots of good night kisses and Em actually stayed in bed after they left and drifted off to sleep.

Theresa

Thursday February 3rd:

Who would have thought that this would be Emily's favorite day for the entire trip. We started the day out with breakfast and then a quick stop at the Mushroom buiding to make Em's star that was mounted on the wall in the building and made a permanent part of GKTW. We also made a visit to the theater at GKTW for a special visit from Mickey and Minnie, as well as Goofy, Pluto and Belle. Em danced on stage with Mickey and Minnie and had a grat time with them. Having the characters at GKTW enabled the kids to have much more one on one time with them. As for the other characters...Em set her sights on Pluto and would not let up, she wanted to play with his floppy tongue. She was relentless with that poor dog. Once we were able to drag her away from Pluto we headed out for "Cocoa Beach". We were only at the beach for about an hour all total and it made this girls trip complete. Of course, because of her bandage, she was unable to go into the water past her calves but that was enough for her to be happy. She walked in and out of the waves and giggled and had such a great time. Before she would allow us to leave she insisted on making a sand castle. She and Dave made their "castle" (more like and egg) and she topped it off with some bird feathers she found in the sand. The worse part of that trip was hearing her cry because we had to leave, though it only took minutes in the car before she was sleeping like a baby. We of course had to stop at Ron Jon's Surf Shop to buy her something to confirm her trip to Cocoa Beach. Once back at GKTW it was shower time, then a friend of ours Chuck met us there. We had dinner and then we went to the Christmas and street party. Em got to see Santa and we got some pictures there, then a Christmas gift and out to the street party. We ended the evening at the ice cream shop and then off to bed to prepare for another day of fun the next day.

Theresa

Wednesday February 2nd:

We started our day at the Gingerbread House for breakfast, after that we went to the horse corrall so that Emily could ride one of the horses. She had the most fun riding "Chance". Em laughed and squealed and was yelling out to Dave so she knew he was watching her, she was giving high fives to the volunteers who were helping her. The volunteers had a blast just watching her have fun. After her ride she was given an official cowgirl hat to go with her cowgirl boots she wore that morning. Once done at the corrall we headed back to Em's castle to change outfits for our next stop... "Magic Kingdom"! We rode the tram to the park entrance and the took the ferry over to the park. Emily was able to see Cinderella's castle from across the water and was squealing with excitement. Emily's first request was to go see Mickey and Minnie so that's what we did. When we got to toon town and made it through Mickey's house both Mickey and Minnie were waiting at the end of the tour. Emily was so excited she screamed the minute she saw them and everyone in the building started laughing at her reaction. It was hard to explain to her that she had to wait for the kids in front of her before she got her turn to see them. Once it was her turn, she ran to them and gave them each a big hug (and we thought she would be afraid of them, ha). She got her pictures taken and spent a few minutes with them and then we were on our way to the next stop, which she wanted to be whereever Donald Duck was. We actually made a few stops on our quest to find Donald. We saw the Princesses and Tinkerbell and the other fairies. When we found Donald she actually ran to him like he was her best friend evr. We took Em on a couple of rides like It's a Small World, the carousel, she requested to ride Dumbo, Peter Pan's Flight, Winnie the Pooh. She was able to see several other characters as well. We had use of the Make A Wish courtesy room whenever we felt Em need a break or when TPN had to come off. It was a cool, quiet and comfortable spot to just get away from the crowds. We had a front row spot for the afternoon parade but Emily slept through it in her stroller. We didn't stay long after that and just called it a day so she didn't get worn out. That was a pretty big first day!

Theresa

I am so far behind and for that I apoligize. I will attempt to finish off Emily's Make A Wish experience with accuracy after so much time has passed.

Tuesday February 1st:
This was the first day of Emily's actual Wish trip. We made it to Give Kids The World for check in. Emily was thrilled with the rocking horse in the lobby of the check in building. We could only imagine her excitment for the rest of the week if this rocking horse was making her that happy. We filled out our paperwork for our stay and then Emily and I rode with a staff member in a golf cart while Dave followed in the car. We drove to our villa which turned out to be a castle for "Princess Emily". She was so excited and to this day still says she wishes we could go back to her castle. We unloaded the car and unpacked and then went exploring around Give Kids The World. There was the theater, the Gingerbread house (where we ate breakfast and dinner), Amberville train station, the Mushroom building, the carousel, the horse corrall, the Sleeping Tree (Emily's fear of the trip, she hated that tree) the candyland playground and so many other things to see and do there. Later that day we made a trip over to Downtown Disney to meet with Grandma and Yeah-Yeah. We rode on one of the boats across the lake from the Westside to Downtown Disney. Emily rode the carousel and we walked around through the different stores. She had a great time there but we couldn't wait to get her to Magic Kingdom....

Theresa

Emily had a great first day of vacation...

She spent most of the day just relaxing at Dave's parents (Grandma and Yeah-Yeah), winding down from the long car ride and her bout of motion sickness from that ride. No vomiting today woohoo! We did lunch with our friends Sal and Susie at Tanners. Then after nap we went to Crystal and Chris' and met an awesome woman, Diane and her dog Gracie..Diane is an author, among many other accomplishments, who wrote the story of how she met her dog Gracie. She tells of the trials that Gracie went thru and how she came to be with her. The part of the story not told in the book is how Gracie made an amazing difference in Diane's health and continues to do so everyday. Emily received an autographed copy of the book, a Gracie Baby stuffed animal, tee shirts, a Gracie bracelet, pictures of herself with Gracie and Diane and 2 additional Gracie babies to take home for some special little girls who are in need of Gracie babies of their own. What an amazing afternoon this was! Thank you Crystal and Chris for introducing us. And thank you Diane and Gracie for sharing your story and time with us. That evening we went over to Aunt Cyndi and Uncle Jac's. Em played with Uncle Jac most of the time we were there. Emily's Make A Wish vacation starts at Give KidsThe World tomorrow. More memories in the making. She is a happy little girl just after today, we can't wait to continue the week and see her glow with more excitement! Stay tuned...

Theresa

It's hard to believe that one year ago today...

It's hard to believe, but one year ago today, Munchkin came home to live with us. Who would have known that this little person would have such a gigantic impact on not only us, but with so many others.

When she came home with us she was a quiet and reserved little girl who weighed 21.6 lbs and was wearing size 18-months clothes. And today - an outgoing, extremely funny, little princess who now weighs 35.4 lbs and is wearing size 4T clothes. Her improvement has been incredible. Her one doctor (and boyfriend) says her labs are rock-solid. Munchkin's health is really great right now. Her physical strength has grown immensely. Her mental attitude is so happy! She is an incredible little girl! To see her right now, one would never know the serious illness she fights.

Through her, our world has gotten much smaller and our circle of friends has grown larger than we ever thought. Dr. Boykin, Dr. Brian, Rosaline, the staff at the doctor's office, the nurses at Sutton's PICU have all been a god-send when Munchkin has been in the hospital. The transplant staff at UNMC, where Munchkin will go for her transplant have been so supportive, and will become an important part of her life. The staff at National Pharmacy have been so helpful and so cooperative when we have needed you in those special times (even though they ignore our request, week after week, for a Louis Vuitton bag for Em's TPN). We thank the nurses from Trinity Home Health without whose care for Munchkin would not allow us to function normally (whatever normal is). And who can forget the girls at our Target Pharmacy who always take care of her medicines and have taken a genuine interest in her life.

But Judy and JR Rader have become saints in Emily's life. They have done more for her and love her as if Em was their own grandchild. They are truly an inspiration to us and have impacted Em's life as much as she has impacted theirs. They are a gift from God!

There is no way we can thank all of you enough for all that you have done over this past year. But believe me, we truly appreciate everything.

Munchkin - what a gift you have given us this past year. We thank God every day for you and what you have brought to our lives.

Love you, Baby!

Mama and Dave