Jackson's "Different Eyes"

Jackson had his outer and inner eye surgery on Friday, November 13th. We got to the hospital at 10:30 and they took him back at about 12:45. He played happily and even had a surprise visit from Mr. Steve and Mr. Keith (our music ministers). The surgery lasted about 5 hours. Dr. Cheeseman, the ophthalmologist, widened the eye openings by making incisions in the outer corners of both eyes, and he moved the eye muscles surrounding both eyes to correct his vision problem (eyes turning in). Dr. Chen, the plastic surgeon, made an incision in his right leg, removed fascia from the leg and used it to create slings (3 per eye) that run from above his eyebrow through his upper eyelid to open the eyes more. When Daniel and I went back to see him in recovery, it took us both by surprise to walk around the corner and to see Jackson's EYES wide open and staring at us! He was comforted easily and kept looking up at the ceiling and the lights. My sister-in-law, Hannah, and I stayed with Jackson in the hospital overnight, and he came home around 1:00 on Saturday. Outside of being irritated with not being able to close his eyes at night, his recovery has been so smooth, and we just couldn't be happier with the outcome!

Jackson calling out before surgery: "Get me out of here!"

Poor buddy! Not only do his eyes hurt, his leg does too!

Rivers came to visit Jackson a couple of hours after his surgery. We weren't sure about whether or not she should see him, but she wanted to be there to comfort him. In fact, she came the next morning too. Here she is making out a grocery list with Aunt Hannah.

Saturday, he played in his playroom some, but was generally tired. We all stayed home from church on Sunday to get some much needed rest and recuperation!
Calling out again: "Hey guys, did you know that there are lights on the ceiling?!! Wow!"
Our handsome little man! We now have two children with no surgeries in our near future! Praise God!

We went to the mall last night to have pizza and let the kids ride the carousel. On the way there, Rivers was "talking to" Dr. Chen on the phone about her baby doll, Kate. She told Dr. Chen that "Kate needs the same kind of 'different eye surgery' that Jackson had." It was adorable!

Rivers is Home

Rivers got out of the hospital on Saturday, August 8th. She had a post-op appointment on Monday which included an x-ray. It was so awesome to see her leg completely straight! Dr. Kasser did a phenomenal job, and we are so excited to see what her leg looks like when she comes out of the cast. We will go back to Boston on September 11th for another appointment and x-ray and possible cast removal.

Rivers has done really well since being home. She remembers the previous spica cast and definitely appreciates the freedom that this cast provides in comparison. Yesterday, we were sitting on the floor playing with blocks when she decided that she wanted to watch a television show. She slid her leg over, picked up her left leg, and then slid her bottom. She did this several times until she was directly in front of the TV. Children are so smart!

Recovery: Day 3

Rivers had a great night. Her pain is controlled by oral meds. She feels much better being off of the morphine. Last night, we took her downstairs in a buggy to see the "ball popper" and watch the fish. I knew she wasn't feeling the best when she didn't want anything from the gift shop! We're so thankful that she is in a leg cast rather than a spica cast. It is already so much easier. She will be able to sit anywhere as long as her leg can be supported. I'll post pictures later. We're waiting for her wheelchair to be delivered and for final papers to be filled out before we can leave.

Recovery: Day 2

Rivers is doing really well today. Daniel stayed with her last night, and he said that she woke around 3 am when the pain block wore off. She is still on morphine and valium, but she just needs about one dose of morphine per hour. Once she wakes up from her nap, we will start encouraging her to eat in order to start taking her pain medication orally. She has been asleep since noon. She has complained some about her leg or knee hurting, but it has been pretty easy to control. They have ordered her a wheelchair, and it should be arriving soon. Hopefully she'll be feeling well enough this evening to go for a little ride around the floor. They are expecting her to be discharged tomorrow. Thank you for your continued prayers! We are very blessed and can't wait to get back home!

Rivers is Resting

Rivers is doing really well. She is resting comfortably with the help of Valium and Morphine and has asked repeatedly,"When can we get out of here?" Hopefully she will be feeling well enough Saturday for us to be able to return to the Devon Nicole house. For now, she's doing really well. She stayed awake long enough to watch two episodes of Blues Clues and to blow on her pinwheel a little bit to clear up the congestion in her chest. Her oxygen saturation has been better than after any of her other surgeries. We're praying for her to have a peaceful night's sleep, aided by pain medication of course, and then hopefully she will feel like eating in the morning.

Rivers Finished With Surgery

Dr. Kasser came out about 15 minutes ago and was very pleased with how the surgery went. He was not able to do the arthrogram (dye in the hip to check blood flow) because of the build up of scar tissue, and he decided to leave the plate on her femur for now. He cut her femur and rotated it 60 degrees, then put another plate on. When he rotated the femur, he said that the muscle came with the bone. Praise God! He wasn't sure if this would be the case because of her Arthrogryposis, thus, the thought that he would need to do some soft tissue reconstruction. SO EXCITED! He is very pleased and said that her thigh is now aligned with her knee and calf! I can't wait to see her! They are doing a nerve block now to help with post-surgery pain, and they're putting her pink cast on. We should be able to see her in about 1-2 hours. Praise God for this wonderful news! Thank you for your prayers!

Rivers In Surgery

Rivers is in surgery now. They probably got started at about 12:00 rather than 11:00. In the picture above, I am walking her back to the OR. She was really woozy from the Versed. When I lay her on the operating table, she started to crack up laughing! She wasn't too keen on breathing in the "bubble gum gas," but she wasn't as resistant as she has been before. I stayed beside her until she fell asleep.

Once again, we continue to be pleased with Dr. Kasser's and Dr. Kim's approach to Rivers' case. In reading the CT scan from Tuesday, Dr. Kasser saw that although Rivers' hip is still in place, the femur is rotated forward. I have noticed Rivers hip protruding a little when changing her, and I had started to get a little concerned that it had come out again. With this in mind, Dr. Kasser will cut her femur bone and rotate it 45 degrees forward, although it is out to the side a full 90 degrees due to her previous surgery. I have been concerned about the possibility of them over-correcting the femur when she has not had any physical therapy to allow her to move her leg forward rather than to the side. Also, she is still wearing her brace 15 hours a day, which puts her in a frog position. All this to say, I think that they have a good idea of what they want to do.

Here, Rivers is picking out the color for her cast, which, as you can see, will be PINK! Daniel was carrying Rivers on the way to the hospital this morning, and she turned to him and said,"I'm going to have surgery on my hip today, aren't I?" It just made my heart sink. We've been having conversations with her about,"If Dr. Kasser thinks he can help you walk and run better, would you want him to do surgery on your knee?" Her answer this morning was,"Yes." She was timid and wary of all of the nurses and doctors who came in to talk to her. She kept saying,"Let's go back to our hotel." Poor thing! I just hated it for her! She had a great attitude, though, and just got a little bit teary. I know that she will be so grateful when she looks back on this one day!

Surgery Tomorrow, Fun Today!

Rivers' surgery will be tomorrow morning at 11:00. We will arrive at the hospital at 9:30. Thank you for your prayers for her safety and knowledge for the doctors. We will have the computer with us and will update the blog as we hear news.

Rivers had a great time today at Boston Children's Museum! It was the highlight of her trip so far! She danced, played with shapes, cast shadows shadows on the wall, played at the sand and water stations, saw an improv play about "The Three Little Pigs," and played with golf balls in the "raceways" area. It was so much fun to watch her explore!

Yesterday afternoon, we took Rivers to see her first movie inside of a movie theater at the IMAX. They were showing "Under the Sea" in 3D. She enjoyed it at first, but the glasses didn't fit her and she lost interest about half-way through. Daniel and I loved it and were reminded of just how intricate God's creations are.

After eating breakfast this morning, we went on a tour of Fenway Park. Our favorite fact from the tour was that a Mr. Yawkey from South Carolina bought the Red Sox for $1.2 million dollars in the early 1900s, and now, the franchise is worth $900 million. What an investment! Rivers is posing here in a souvenir shop across the street. Jackson will be happy to know that we bought him a Red Sox t-shirt!

Pre-Op Day in Boston

Rivers had her pre-op appointment this morning at Children's Hospital Boston. We arrived at 8:00 and left at 2:50, so it was a very long morning! The hospital staff keeps things entertaining for the kids, though, by providing "child life specialists" who help entertain the children. Rivers enjoyed making a lot of art this morning in between her appointments.

Rivers had appointments with a nurse (she weighs 27.5 pounds...teeny-tiny!), anesthesia, to have x-rays, to have blood drawn (no tears, just whimpers), and we saw Dr. Kasser. We are very "excited" about what Dr. Kasser has planned for her surgery. He was pleased in reviewing the x-ray of her hip. He is not going to cut her muscle, but will be cutting her femur bone again to try to bring her thigh where it should correctly meet her knee and calf. It is almost as if the lower half of her leg was put on sideways, if that makes sense. He will extend her scar just below where it is now and, I believe, operate from the back of her leg. Anyway, he knows the exact details and seemed confident that he could improve her ability to walk. He anticipates putting her into a leg cast (thigh to foot), and mentioned a spica cast as a last resort. We will get the time of the surgery tomorrow afternoon and will post the time tomorrow evening. Thank you all for your prayers!We had a great flight yesterday! We were able to get a direct flight from Charlotte to Boston for a pretty reasonable rate. Rivers sat between Daniel and me and enjoyed the take off and landing the most. She gets so excited at the 2 parts that make us the most anxious!

The view out of the window of the plane. It will continue to amaze me no matter how much I fly!

Eating shepherd's pie and clam chowder in Fanneuil Hall. They have such delicious food!

Riding the carousel by the bay. We were surprised to round the corner just past Quincy Market to find a beautiful outdoor carousel. We enjoyed our time outside last night as it is much cooler than South Carolina! Speaking of SC, people continue to remark about our accents, which is so funny to me! They are none too shy about letting us know that we don't sound like we're from around here! God bless them all, ya'll!

Getting Back to Normal

Rivers started walking independently again last Friday. Eric, Mimi, and Pop-Pop had come over for dinner (take out), and we were all talking when we realized that Rivers just walked by! I said, "Rivers! You're walking!" She was so excited, and we were all stunned. She had started using her Radio Flyer wagon and her grocery cart to walk but had not attempted to walk across a room yet until that night. Way to go, Rivers! You are one driven little girl!

It has been so cold, but we get outside every now and then to play. Jackson still loves going high in the swing. He has done so wonderfully following his surgery! It has really amazed us how quickly he has recovered and returned to normal activities. We saw the plastic surgeon and neurosurgeon within the last week, and they were both very happy with his recovery thus far. He even had a little "photo shoot" at the plastic surgeon's office. It will be neat to see the before and after pictures. Of course, we could tell immediately following surgery how much just changing the shape of his forehead changed his appearance. We're all just so thankful that this surgery is behind us and we are enjoying both kids being able to get around. It is a HUGE blessing!

A quick picture of Jackson's head as he breezes by. This picture was taken about a week ago, so his hair has grown even more. They did such wonderful job!

Daniel and Rivers riding the Gamecock on the carousel. Quite possibly Columbia's cheapest but biggest thrill for a three year old!

Rivers "reading" her well worn Bible. It amazes me what a good sleeper she has always been despite not having the choice to lay on her stomach to sleep for about half of her life.

Our family is doing wonderful and we're definitely getting back to normal. We are so thankful for every one's prayers and support through the last six or so months. I know that many of you are reading in response to praying for my children, and I greatly appreciate your prayers! God has blessed us through and through. I think that Daniel and I have both been kind of "detoxing" by sleeping a little more and just relaxing at home. I don't believe either of us realized how much this was taking out of us physically. That's one of the reasons I haven't blogged lately. I just needed a break from the "news" aspect of my children to just enjoy the day to day with them. Thanks for being patient and for those of you who wanted me to post an update: thank you for your concern. I needed a little encouragement to get things going again!

We're Home

Jackson was released from the hospital yesterday morning, but we didn't make it home until late afternoon. We actually forgot that his car seat was in my car that Daniel drove back to Columbia. Thankfully, Charlotte isn't far, so he drove up midday, we all had lunch in the cafeteria, and then headed for home. Today, he's done so well! It's so amazing to me that he is crawling and walking and talking just like before. I was really expecting some setbacks for a few days or weeks. He isn't even taking any pain medicine. We are just so full of praise to God for how smoothly this week went! Daniel and I are so glad that this surgery is over and that he is healing so well so quickly. Thank you all for your thoughts, prayers, and well wishes this week!

Jackson's Recovery: Thursday

Jackson had a wonderful day today! When I got to the hospital this morning (Mimi stayed with him last night,) he tried to open his eyes and he could just barely see out of his left eye. He was so happy to be able to see again. Once again, his fearlessness returned. He sat up in bed and started crawling around and babbling. He was on the move, which made me nervous with all of the cords that had to be looked after. They capped off his IV and removed the leads to the monitors, so he only had the drain bag which we pinned to the back of his pajamas. He loved the Exersaucer that they brought to the room. I took him down to the play room, and he crawled and walked around while playing with toys. He was back to himself, and I couldn't be more happy unless we were able to go home today. The doctor said that he had too much fluid leakage yesterday to remove the drain, thus, they will determine in the morning whether or not he can go home. He didn't have nearly as much drainage today, so my hopes are high! I miss Daniel and Rivers and can't wait to get home so that we can all be together again!

Jackson's Recovery: Wednesday

Jackson has really come a long way in the past 24 hours. Although he looks really rough in the pictures below, we were prepared that the swelling would be at its worst today. I stayed with him at the hospital last night, and at times, it felt as though I was looking at someone else's child. But when I held him close, I knew he was mine. He woke up at 1:00 startled and very upset that he couldn't see. The nurse rushed in from hearing him outside the door and helped me get him up. He immediately put his hand on my face and put his lips against mine to see that it was me. It was absolutely precious! He has continued to be very easy to settle. When the doctors came in this morning, they removed the dressing on his head to reveal a bald little buddy with a zig-zag incision from ear to ear. It was startling to see, especially with his eyes swollen shut and protruding so much they were even with the tip of his nose. His neck was also very swollen. We've made a few joked about how he looks because if we don't find some humor in it, we'll cry about it. It really is sad, but we were prepared for this. I wasn't expecting the drain in his head to be a tube just below the skin that runs ear to ear as well. Despite the drama of his appearance, he's our same sweet buddy. He loves having his face tickled and rubbing his fingers on his blanket to soothe himself. This evening, he sat on my lap (supported) and played with some toys. He laughed once, and we laughed at him. He enjoyed the attention and kept on laughing like "Webster" used to on that '80s show. It was adorable! He got off of Morphine today, but his stomach couldn't handle Tylenol with Codeine or Lortab, so they're trying Motrin. Hopefully this will hold off any pain. He has really done wonderfully and is such a brave little guy! God has been faithful to provide in EVERY way for Jackson. This has really gone much more smoothly than I could have imagined. We're hoping that he will get out on Friday. I'm sorry that we couldn't post this sooner, but we've been having trouble with internet access and cell phone reception in the hospital.

Tuesday night: swelling getting much worse...

Wednesday morning...seeing Jackson's incision for the first time, swelling peaks by mid-afternoon...

Bless his heart!

Jackson's Recovery: Tuesday

Poor little guy! It's been a big day-and-a-half for Jackson, but all is going well. He got moved from the PICU to the eighth floor this morning. They removed his catheter, the PIC line in his neck, and the oxygen before the move. He still has a drain in his head to get rid of extra blood and fluid, but it is starting to slow down. Daniel and Mr. Crowson spent the night last night and said that he did pretty well considering all he's been through. He gets morphine about every 2-3 hours to control the pain. His eyes are getting more puffy and purple. They said that the swelling would probably reach its peak tomorrow. He's been a little bit upset and scared not being able to see us. He took a bottle of Pedialyte this morning and wanted more, but we have to make sure his stomach is settled. He's laying in bed listening to his little "Praise Baby" DVD, so he's resting pretty peacefully.

All in all, he's doing really well and looks much better than I anticipated that he would. Please continue to pray for his healing and that he would be comforted easily despite not being able to see us. Thank you all for your support during this time! Your calls and e-mails have been very encouraging. My cell phone died, so if you need to reach me, please call me on Daniel's number.

Jackson In Surgery: Monday

Well, they called out at about 10:15 and said that they were beginning Jackson's surgery. We put him into the arms of a nurse at 9:15. He went willingly in his sleepy "Versed" state of mind. He looked so cute in his little hospital gown with the back open and his diaper showing.

Jackson is such a sweet little boy! He had no idea what was in store for him this morning when we came to Levine Children's Hospital. It is such a beautiful place with lots of colors and fun things to distract you. He played contentedly in the pre-op holding room and walked around in his little blue hospital socks. The nurses, anesthesiologist, and plastic surgeon (Dr. LeFaivre) came in to talk with us and go over details. Jackson went straight to the anesthesiologist, which stole his heart. He sure knows who to get in good with, huh? The surgery should last until 5:00 or 6:00. We'll do our best to keep everyone updated...

Jackson's Surgery Rescheduled

Jackson's surgery has been rescheduled for Monday, January 12th at 10:00 at Levine Children's Hospital in Charlotte. It is a major disappointment that he wasn't able to be rescheduled sooner, but we are dealing with what we've been handed. Daniel spent most of the day yesterday looking into other hospitals given that the original reschedule date was February 4th, but thankfully they gave us an earlier time. Daniel talked with Dr. LeFaivre at length yesterday regarding the safety of putting off the surgery this long. Dr. LeFaivre said that since Jackson's surgery involves one cranial suture and not two, it should be safe to wait. We are praying for Jackson's continued protection and ask that you would as well. In the meantime, we'll be enjoying our most favorite time of the year!

Boston Trip Wrap Up

Well, we're home and settling in. I haven't gotten around to the blog yet this week with all of the acclimating that we've been doing since returning late Sunday. Last Saturday ended up being a very draining day. We actually thought through the morning hours that we may not be able to fly back until Monday because Rivers just didn't seem to be turning the corner. After they removed her epidural, though, her oxygen saturation went back to normal and she started to drink more milk and nibble at some food. In the evening, she felt well enough go downstairs to watch the ball maze, but fell asleep after about 15 minutes. She had a great night Saturday night and was ready to leave by 11:45 Sunday morning. She laid down in the taxi using a special seat belt designed for children with spica casts, and was smiling and saying, "Yippee!" as we drove along. We went straight to the airport. There wasn't a direct flight, so we went through Newark. Needless to say, we were SO HAPPY to get home! Sadly, Rivers thought that when she got home that she would put her shoes on and begin to walk again, so she was very disappointed to find out that she was still "stuck." Monday was a hard day as she got used to the idea of being held a lot and losing her independence, but she got a new chair (...a highchair...but we call it her BIG girl chair) that she can sit in so that she can eat, play, and do crafts by herself. This greatly improved her spirits as well as getting off of all of her medicine by late Tuesday. She went to children's choir last night and was so glad to see her friends and Mrs. Nancy, but I noticed that she didn't sing or do any of the hand motions the whole time. She still has a lot of adjusting to do, but she is more and more back to her old self every day. Today, she went to the zoo with Mrs. Crowson while my mother and I took Jackson to 3 pre-op appointments in Charlotte. She had a great time at the zoo, and Mrs. C said she played and was happy all day. Every day gets a little bit better!

Poor baby!

Our first picture together after Tuesday's surgery and CT scan.

Mrs. Crowson brought Rivers a beautiful Disney princess balloon to brighten her spirits on Wednesday before she and Daniel left for the airport and before Rivers' second procedure.

Thursday, Rivers dozed on and off and watched Playhouse Disney shows and Barney tapes. She's wearing the dreaded oxygen mask that irritated her until I rigged up a nebulizer mask so that the cord would stay where it was supposed to.

Dr. Kim with Rivers on Friday. He seemed very flattered that we wanted to take his picture with her. We're so thankful for all that he was able to accomplish!

Mimi and Rivers. Bless her heart! These were very long days stuck in the bed. She got to where every time the door opened, she thought a nurse was coming in, and she would start crying. She also asked us to cover her ears so that she wouldn't hear the noise from the oxygen and the beeping of the monitors.

Rivers rested before we went downstairs. She was so swollen from the IV fluids and medication that her cast began to impair her breathing and they had to cut a larger hole in the stomach of the cast, and they split the part around her chest so that she could breathe more easily.

Rivers loved getting out of her room Saturday evening and going down to look at the ball maze. We pulled up a chair after about 10 minutes, and she fell asleep watching it before we went back upstairs to have dinner.

Rivers and nurse Megan. She took care of Rivers 3 days in a row and wore pink the day we left in her honor. What a sweetheart!

Flying home to see Daddy and Jackson! Yeah!