Home At Last

We were pleasantly surprised this morning when the doctor came and told us that he felt like she was doing well enough to go home if we felt she was ready. He said we could stay another day if we wanted to, but asked us what we thought. At that point Sophia got out of bed and started packing. We had to pack and get discharged, including getting her medicine and talking to other people to check out. Finally, we got out of there sometime in the afternoon (so busy I really was not paying attention). We had to stop and pick up meds and a couple of other things and then we set off for home. Sophia (and mom and dad) were so happy to get on the road for home. To our surprise Sophia did not sleep at all. We got home and started to unload our car and unpack. Lillien and Alex came home and Sophia was happy to see them. Some family members stopped in to see her and she was putting on a show (we had to get after her to settle down). It is amazing to see how well she is doing. You would never know that she had anything wrong with her to that she went through surgery, accept that she loves to show off her "battle wounds". We have to keep her from getting to physical over the next few week and keep an eye on things like infections and blood pressure. We must take her back for a follow-up before Christmas. She keeps talking about being home for Thanksgiving, and we obviously have A LOT to be thankful for this year. Thank you all again for all the thoughts and prayers that you sent with us, it did help us make it through and helped Sophia. Now that we are home this will probably be the last post for a while. We are glad to be home and are looking forward to being together for the Holidays.

thanks again
Daimien, Suzi, and Sophia

Getting Closer

Sophia is getting closer and closer to getting to come home. She has gotten her personality back tonight after getting a nap (with dad) this afternoon. We had to wake her up in order to get out some of the tubes that she has been wanting out. She is down to one IV, so now she can get around the room and is much happier. She got to go down to the playroom for a little while tonight. She made a fake meal on the play stove for Alex, Lillien, Grandma Amy and Grandma Georgia, played doctor with some of the babies, and got play dough that she was able take back to her room. She also got a little cloth doll and medical stuff that she has been playing with. She pretends that she is the surgeon. She has said that she wants to be a nurse someday, which would not be out of character for the family. The nurses seem to love her as a patient, because she never really complains (accept this morning), she says thank you for almost everything (she even thanked the nurse once for her IV), she is tolerating the painful things well, and takes her meds with no problems. There are not many kids on the floor either, so it allows them to spend a little more time with her. She really has done a great job through all of this and it is remarkable to watch her get better. She will have some restrictions when we return home but with the Thanksgiving break it should make things a bit easier for her with both mom and dad being around:-)
Daimien and Suzi

Noon on Saturday

It is about noon on Saturday and all seems to be going well. The plan is still to come home without any medications. It will be our job to check her blood pressure to make sure that it continues to stay down. We will have to meet with all the doctors about her in a couple of weeks. There was some thought that we could get out of here early because things were going well, but Monday at the latest is still what we are being told. We have to get her to eat and drink kind of normal and they want her to get up and play a little. The pain meds have made her itch from time to time so she has to take something for that. She had not talked about any pain, but is taking quite a bit of meds. She has started to talk a little more today, we don't think that her throat hurts as much, so hopefully she will begin to eat more as well. Obviously there is a check list of things they want her to do to be able to leave and we are working on them but she does get tired fairly quickly. She did get a sponge bath which went OK and they washed her hair in bed with a special cap. She thought that was a cool idea, but when it actually took place she was not that happy. She is making good progress and we will know more about how she is handling the pain and how fast she will recover as she starts to get unhooked from all the "stuff".

thanks again
Daimien, Suzi, and Sophia

Visit by Dr. Cramer-Friday night

Around 6:30 p.m. Dr. Cramer came by to visit Sophia. He was very pleased with her blood pressure and will be sending her home without meds:-) We are looking at being able to come home on Sunday or Monday if everything continues to go well. She is still very tired tonight and is not up to eating anything yet. I'm sure that will change if she is like the rest of us in our family. Thanks for all the calls and your thoughts and prayers. We are so happy for Sophia and can't wait to be back at home with our family.
Have a great night and thanks again!
Daimien, Suzi and Sophia

Great News (On the Mend)

It is about 2:00 pm on Friday. Sophia is back to her room and is on the mend. She was taken down to surgery at about 6:30 this morning. After many nurses talked to us, and her, she was finally taken back at about 7:30 and the operation began at about 8:00. We thought that it was going to be about an hour for surgery when we came up here, we then found out that it would be more like 3 hours. We sent her back after she got a little dose of "special medicine". After a LONG WAIT we got to see the doctor at about 11:15. We talked to the Doctor and he told us about the operation. He was very happy about how everything went and said that there were no complications. Her blood pressure has gone down to 106/47 (a few minutes ago) from 135/84 (last night). The doctor is very optimistic about the prospects of her not needing medicine from now on. The last time she had medicine was last night about 7:30. We will get to see Dr. Cramer (her main doctor) tonight, we think he will be happy with the results for now. They will be monitoring her closely to make sure that the blood pressure stays down. So we have been hoping for good results and so far everything seems to be going very well. She is still hooked up to a lot of things (cath, cords, IV's, and an epidural - for the pain). They say that tonight and tomorrow will be the most painful for her. She has not been awake much since the surgery. She woke up for a few minutes to see Aunt Shelly, Uncle Waylon, and Erhart who came up to sit with us while we waited and see Sophia after it was all done (even though they were not supposed to be here because of the "flu rules"). It was great to have them here, it made the time go fast, and we really appreciated it. Sophia has her movie in (E.T.) and is in and out of consciousness. It is great to have her back in our hands and a bonus that everything seems to be going so well. God has other plans for her! Thank you again to all thoughts, prayers, and support.

Daimien, Suzi, and Sophia

Thursday Night (9:00)

It is about 9:00 of Thursday night and we are getting Sophia to bed for her big day tomorrow. We had a pretty good day. We first found out that Sophia did not have to get the Arterial line in today. They are going to wait until they put her out for surgery to put that in. After the bad experience she had last time with that it was a blessing that they are going to wait. Better for Sophia, mom, and dad. Sophia has been talking and talking and talking with the nurses and doctors. I is funny to listen to her talk about how much she knows and how much she wants to talk about it. She is her mothers child. She got to have her Applebees she was begging to have and then her IV which she obviously does not like. She keeps wanting to call or Skype people to talk, I think it makes her feel better to tell others about what is going on. I don't think that she will be in bed to early tonight. The way that she talks and the things that she has said has led us to believe that she is more nervous about this than we have thought. We don't think that she is as nervous as mom and dad! The people up here have been great and make it more comfortable than it should be. Tomorrow is the big day and she will be called to surgery sometime between 6:00 am and 8:00 am. Thanks again to all for all the thoughts and prayers, they mean more than you all know!

Thanks again,
Daimien, Suzi and Sophia

P.S. We have told some about this BLOG, but if you would share with others (friend and family) that it exists that would be great.

Keeping up With Sophia

The main purpose of this blog is intended to keep people up to date on how Sophia is doing. We have had many people ask us about her condition, how they can help, and if we would keep them informed. The support that has been given to our family by so many people has been amazing. We appreciate all the time you have put in helping us care for Sophia. There are many who have helped with our kids (especially our family) in caring for them while we are gone on our trips to Mayo. It is not easy for them and we are very grateful for all that is done, whether it is a comment made to them about how they are doing or a ride if they need it. We thought that this may be an easier way for those who would like to know what is going on, be kept up to date (at least as recent as we can keep it), and a tool for communication. We don't know, but this might work better that e-mail and trying to call everyone that wants to know. We all appreciate the thoughts and prayers you send with us, and with any luck little Sophia will not have to be poked and prodded much more and she can resume her life as a little kid.

Thanks Again
Daimien and Suzi.