Better late than never!

 

Just wanted to send a quick post to say that Darya is doing great. Though she is paralyzed from the right knee down, she is walking, running, jumping, and climbing everywhere. Darya is the most active of our 4 children. Hopefully, I will post some more pictures soon. This was 1 from Easter. Sorry for being such a bad blogger. Hope this finds all of my blogger friends doing well.
Hugs!
Karen

Christmas Joy!!!

I forgot to share this pic in the previous post. The happiness on her face brings tears to my eyes. She was so very happy sitting in the middle of her brothers and cousins.

Happy New Year!!!!!! (a bit late)

Hope everyone had a Merry Christmas and the New Year has started off great. Darya is doing really well. Her incision is healing perfectly. She is a very happy little girl. I'll try to post more..... life does get so busy with 4 kiddos. Pray really hard for our family as I return back to work next week. I know so many of you have had to return to work... so you know what I'm going through. On the bright side..... I love, love, love my job and the people I work with! Social Work for me is a calling... something I was meant to do. My parents and mother in law will be taking care of Darya and Nathan everyday and the older two are in school.
I want to add how happy I am for my good friend Renae who is traveling to Russia this Saturday to pick up her daughter, Olivia. She deserves every happiness. My prayers for safe travels are with her. Cannot wait to meet little Olivia. Darya said she can't wait either! :)

Much love to all!
Karen

Surgery was a success!

Praise the Lord! Surgery was a success. So sorry I haven't posted an update already. We did not have Internet while in the hospital and taking care of a 17 month old post surgery is quite time consuming. We went in on Thursday morning at 6:30 and were taken back to prep for surgery at 8:00. Just before going back, Santa Claus with Mrs. Claus showed up. Darya was sound asleep but I placed her in his arms and the staff took an awesome picture. I later received it with a nice frame. They gave her a large teddy bear with an adorable red/white scarf. You can see it in the picture of her taken on Friday afternoon. We stayed with her until the doctor was ready for surgery. While waiting we went to Children's at Vandy to eat. There was lots of entertainment. Santa and Mrs. Claus showed up and we got to watch lots of children get their picture made. The joy on their faces was elating. A few Grand Ole Opry entertainers showed up on the Children's hospital stage and sang Christmas Carols. Finally, we went back upstairs and within minutes found out that surgery was complete. Our pastor came and was there with us as the doctor briefed us on the surgery. He offered a wonderful prayer of thanksgiving regarding the success of the surgery and a prayer for her continued recovery. Darya was crying when we got back to recovery, but was easily consoled. She grabbed my thumb and wrapped her little hand around it and hung on tight. She was pretty sedated all day and night. She drank juice and formula during the day. But..... right before bedtime... she got sick two times... so we had to limit her intake until the next day. Moving was agony for her. Her incision is almost 7 inches long. You could just see the pain in her eyes as we tried to move her from side to side. Her body would stiffen and she would scream. The doctor said that surgery was a success. The lympoma on her back is gone but the incision and swelling is there for now. We were placed in a holding room that was extremely small... no shower... and we had to share a bathroom with the family adjoining our room. They had promised that we would be moved to a larger room when one became available. Kerry slept on a cot and I signed a waiver so Darya and I could sleep on a stretcher together versus her baby bed. We were all exhausted. Darya and I slept until almost 10:30 on Friday with a few interruptions. After lunch on Friday, the physical therapist came in for a session. After 15 or so minutes, Darya was sitting up even standing briefly. This came with lots of agonizing screams but I soon realized that much of this was total fear of moving. We just gradually got her used to different movements. Within an hour of the therapist leaving, we had her in a wagon pulling her around the hospital. After our little drive, we came back to the room and was greeted by the doctor. He was apparently frustrated that we were in what he called a "substandard cubicle" and quickly asked if we were ready to go home. We were in shock as we were planning to stay through late Saturday or early Sunday. He said if she would eat and keep it down that we could leave. She refused her bottle but finally ate 3 chicken nuggets, some green beans, and a few bites of mashed potatoes. She kept it down... so we were out the door headed for home around 7PM Friday evening. She is doing well... crawling around the house. She does have a hard time when she first starts moving after a period of inactivity or if her pain medicine wears off.... but over all... she is doing well. Bath time is a bit of a challenge as we cannot get her incision wet. We're managing fine. We are going to pray for a continued recovery and that her little nerves will regenerate and some or even all of her movement will be restored. God can do that! He can do anything! No matter if there is no change, we are thankful that her cord is no longer tethered and that further damage will not occur. As always, thanks to all for continued prayers.

Much love to all!

Karen

P.S. I'm posting a photo of Darya the day before her surgery. She loves hats of all types. I was unable to post a photo post surgery because the computer was not cooperating for some reason. I'll post it later.

Surgery date is set.

Darya's surgery date has been set for next Thursday, December 18th. We have to be at Vanderbilt at 6:30am and surgery will be at 8:30am. We are thankful for this date as they initially called and said December 23rd. That would have put us in the hospital through Christmas. That would not have been good as the boys would be devastated. The other option was January 6th. I go back to work on the 14th and that date would have only given me 8 days to be with her post surgery. The neurosurgeon intervened to get this date set. I'll have to give him a big hug :)) for working this out for us. Ha, Ha! He is very reserved and would probably faint if I gave him a hug. Darya's second physical therapy appointment went great. The therapist will be working on sensory integration related to physical therapy... meaning different types of balancing including spinning, turning upside down, rocking on a ball on her tummy, etc. This is something she didn't do alot of at the orphanage but is so critical to all aspects of her development including physical, emotional, and behavioral. I got to visit with a very special adoption friend after physical therapy. I hope she knows how very happy I am to have her in my life. Moreover, it is so great to have become acquainted with so many families through this adoption process. Please accept my sincere thanks for all the continued prayers on behalf of Darya!!! Oh and Darya is now running in her walker. The therapist had to add a strap onto the walker to hold her in... it is meant to prevent her from escaping. Do you think it worked? NOT!!! She just turns over on her head and slides right out. She catches on fast!!

Much love to all!

Karen

Results of MRI

Darya did really well on Monday with her MRI. Vanderbilt Children's hospital has been wonderful. We got to be with her while she was being sedated and even until we laid her on the MRI table. We had a pager so we were able to go eat and browse around in the gift shop while we waited. We picked up a cute little bear for her. When we were paged to recovery, I expected her to be crying but.... she was just drowsy. Within a few minutes, she was smiling and hugging her bear. She is a trooper!!! The hardest part of the day was when the nurse was putting in her IV. I don't think they quite believed me when I told them she is strong. On the first try, Darya managed to pull the IV out. On the second try, it took 3 people to pull it off. We saw the neurosurgeon a few hours later for the results. He confirmed that Darya has a lipomylomeningocele. Basically, Darya has the worst type but the best of the worst. The lympoma on her back is tethered with her spinal cord... but just a little bit. Dr. Tulipan said it was the best case scenario. He said the surgery would take around 2.5 to 3 hours and would require 3 days in the hospital. There is no risk of hydrocephalus. Also, there is only a 10% chance of re-tethering in the future. Basically, Darya will lead a normal life. No other surgury is expected. He does concur with the physical therapist that her right leg below the knee is paralyzed. He also noted that her left leg below the knee is weak but not paralyzed. Risks of the surgury include possible worsening of her weakness.. but.. we'll pray for God's hand of protection. I just know that the Lord has big, big plans for this little girl. She is so precious in His sight!!!! She is here with the Ledbetter clan for a reason. We are now praying for a quick surgury date. The doctor said it could hopefully take place before Christmas. I explained to him that we want to do it ASAP because I go back to work mid-January. She goes for her second physical therapy appointment tomorrow. She will wear her temporary brace with no complaint but doesn't really seem interested in her walker anymore. Hopefully, I'll post soon about her surgury date.

Love to all!

Karen

All is well with Darya!

Darya did extremely well today!! You wouldn't even know that she had surgury. The doctor said that one of her ears had a current infection and the other has obviously had multiple infections. I want to thank everyone for all the prayers!
Much love to all!

Karen

P.S. I'll try to post Monday regarding the results of the MRI.