We have moved for just a while...

For the time being you can follow Emily's story at: www.cotaforemilygraces.com We are working with COTA to raise funds for transplant related expenses. Thank you!

It's been a Long journey...

these past six weeks. From the last post...what started as a line change in Louisiana, turned into pancreatitis in Texas, is carrying on in Nebraska with many new happenings. Emily's pain was unable to be controlled in the Texas hospital so the transplant doctors in Nebraska wanted her to come up for evaluation of her pancreatitis, and evaluation for reactivation on the National Transplant Listing. Again the pain has not been controlled as of yet, but many changes occurred because of that. Emily went through another Venogram and it was found that she has more available venous access than originally thought. This is great news. Although we received this news, the issue with the pancreas is not resolving and the transplant team suggested placing a peg tube to allieviate some of the pressure that may be causing some of the pain/or the stricture itself, that is in the pancreatic duct. They also feel that now is the time to reactivate her on the transplant listing for not only the small bowel but also a liver and pancreas. Today Emily received the peg tube. She is having more pain of course due to the surgery itself, but hopefully this will be the beginning of a new road to being more pain free. Tomorrow we hope to find out what the plan is to get us headed home or at least back to the hospital in Texas to start weaning off the narcotics. We are thinking that she will be placed back on the transplant listing by early next week...then we start back to the "sitting on ready" tract.

Been to long....

between posts. In February Emily was hospitalized in Texas for 4 days for abdominal pain, a partial obstruction and a virus. We started out at Children's at Legacy and they transferred us to Dallas Children's downtown. The ER there blew us off and said they didn't agree with Legacy about the obstruction. We explained that even if they didn't agree with that diagnosis she was showing signs of pancreatitis. Because Legacy had already given a dose of Toradol her pain was better and downtown said she wasn't in distress and sent her home. As we had told Dallas Children's she would, Em got worse during the night. We took her the next morning to Dr. Baker (her gastro doc) and he admitted her, took an X-ray and found the same partial obstruction that Legacy had found the day before. So she spent 4 days as an in patient. "Go Dallas Children's", needless to say we won't be going back there.

The rest of February was pretty uneventful until the 24th when she was "kicked out of school". The school administrators had never felt she was truly a special education qualifier other than for her health issues. They, along with her teacher assessed her at an advanced kindergarten level. So she was dismissed from the special education Pre K program and will enroll in kindergarten in the fall under the general education umbrella as home bound program.

March has been a fairly busy month. We spent 4 days in Louisiana at Schumpert testing her line and then replacing it. Luckily it was able to be placed in the same place as the old one came out of so there was no loss of site. We came home on Tuesday and Emily started complaining and waking up crying with belly pain. She had an appt with Dr Baker on Thursday and seemed to be fine although complaining intermittently. We made it home and within a couple of hours she was screaming in uncontrollable pain. So Dr Baker admitted her and here we sit. She seemed to be getting some better on Friday and by Saturday afternoon she was getting worse again. Pain meds are working somewhat but she still has pain and we have to do away with one of the meds today.

Here we are in January 2012...

many changes have taken place and life is starting to settle down. We completed our move from Louisiana to Texas on January 30th, 2011. With the adoption of our beautiful little girl complete on December 19, 2011 we were free to complete our move to Texas and finally be done with living out of 2 households. Dave is enjoying his job, and I am enjoying not having to have a job at this point in time.

Emily has just started back with school (at home) through the school system here in Texas. She was supposed to start last week but her teacher was out sick and couldn't be here. The change that has taken place so far in this school system is that they have moved her from one 40 minute session per week up to two 1 hour sessions per week for now. At the end of February we will have a meeting to see where she is at and possibly move her up to 4 hours a week. She enjoyed her classes (2 separate 1 hour classes today) emmensely. Her teacher feels just from the original evaluation and today's classes that she is a very smart child and will do well increasing hours.

We have made a couple of small changes in her medical life. She has a new pediatrician here in Rockwall who seems to be a very nice guy. The office is very clean with very nice staff. He will mainly be on board for childhood illnesses and immunization updates and such. We have also added a Pediatric Gastroenterologist in the mix at Dr Boykins suggestion just to have here for any immediate emergencies with pancreatitis. He will follow her labs every two weeks for her liver functions and Lipase and Amylace levels but otherwise just be there in case of need. We will continue with Dr. Boykin being her main medical contact and Dr Fontenot following her labs for her TPN and Fluids regimen. National Pharmacy is also continuing on for TPN and Fluids and all neccessary supplies connected to those things. We are hoping to not have to make any changes in any of that for as long as we can help it. We did add a new nursing service to handle labs every 2 weeks and at some point will also make a change to their DME for pull ups to be provided. Right this very minute (knock on wood) Emily is doing very well and staying stable with all her medical issues. We head back to Shreveport to see Dr Boykin on February 10th.

So at this point we are just hangin' out in Rockwall, TX trying to adjust to the new surroundings and learn our way around. Lots of shopping at our fingertips but we haven't been out much to check it out. Maybe someday soon. Till next update...

Theresa

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