Visiting Nurse Laura & Dr. Sharpe

Yesterday, we took Gracie to see Dr. Sharpe, her neurologist. We will follow-up with him until time to go back in September to see Dr. Park in St. Louis. Dr. Sharpe wanted to see her legs after the surgery and we had a few questions for him. However, the main reason for our appointment was to visit someone Gracie loves, Nurse Laura. Gracie gets me to play Nurse Laura often when she and I pretend at home. Dr. Sharpe thought her legs looked good. He wants us to exercise her ankles more at home to keep them loose. He wants us to come back in six weeks to see how her legs are progressing.

We talked to him about the anxiety Gracie is experiencing around nap time and bed time. He said he wasn't surprised since she has had someone at her bedside for almost a month now. Her told us to buy an over-the-counter medicine called 5-THP. It's all natural and mostly contains
tryptophan which is what is found in turkey that makes you sleepy. We will try it tonight.

On a positive note, our good friends, The Slocums, returned from Florida. They came over to see us this weekend. I caught a picture of Gracie and Cal swinging.

Getting New Braces

At therapy this week, Heidi took care of casting Gracie for her new braces. The new braces will be shorter than the ones she wore before having the surgery. Gracie got to choose the accent colors and pattern for her braces. The new pair will arrive shortly with pink accents and pastel hearts- so cute! In one of the pictures you will see Heidi working with Gracie to use a walker. Gracie is eager to get around quickly again but she still lacks the strength to go very far in her walker. She is primarily using the wheelchair for her mobility. Daddy even added a bicycle basket to the back!

With all that it going so well with Gracie, she is still having a terrible time sleeping. Last night was the 5th consecutive night that Gracie woke up terrified and frantic. We run back to her room after we wake to the sound of her screaming. She is inconsolable, scared, and pitiful. We assume this is some delayed anxiety from her hospital stay. She is not acting like herself and seems to have no control of her emotions. She even asks us while she's crying, "Why am I so sad?" and "When will I not feel this way?" It has been taking Gracie about an hour to fall back to sleep when this happens only to wake up feeling the same way later in the night. Doug and I (and Gracie) are all behind on our sleep and confused about what we can do to help her. We have a doctor's appointment on Tuesday. Please continue to pray for us. Once we get past this complication, we will be able to focus again on celebrating Gracie's steady progress in therapy.

Note: I posted two messages today so make sure you read both of them.

She's Now 4!

Gracie has had an eventful week! Her classmate from Woodmont Baptist, Cole, came over with his mother for an afternoon playdate on Wednesday. This is one of Gracie's buddies, the same one who helped her so sweetly at the school Christmas program. During the bell songs he not only took care of his part but made sure that Gracie knew each time when her turn was coming up. He could very well be Gracie's guardian angel. They played for a little while inside and then they headed outside where they rode in her jeep and then Cole enjoyed our sandbox while I pushed Gracie in the swing. One of our goals for Gracie is to help her learn to talk to her peers. She often either plays quietly or just converses with the adults around her. We know that some of this is developmental.

Thursday we had our families come over for a small birthday gathering. The grandparents bought her a Wii and a bunch of precious clothes. As she opened her boxes of clothes, she pulled out one cotton t-shirt and said, " Oh this is a good thumb-sucking shirt!" Gracie judges the quality of clothes based on how soft they will feel when she rubs them against her cheek while she sucks her thumb at bedtime. As usual, she blew out candles on two cakes, the one for the crowd and a personal pink cake topped with a fairy and pixy dust.

Friday, I took Gracie to Oak Hill before therapy to watch my students perform some of the Field Day events. She was a celebrity there for sure! The students adore her.

Water Therapy

Unfortunately, I didn't take my camera to the pool today, but Gracie had fun in the water with her therapist. This was her first session in the water since the surgery. She complained a little about her legs itching when she first entered the pool. However, Laura did a great job redirecting her and eventually she moved on. Gracie performed well today, but it was hard for Laura to keep her attention because Gracie kept going into her own little world, singing songs. Doug and I joke that her life is a soundtrack. She has a song or sound for everything she experiences. She amuses us.
She will continue water therapy every Tuesday this summer in addition to her regular gym therapy on the other days of the week. Since Vanderbilt moved its rehabilitation services to 100 Oaks Mall, the location is very convenient for us. The facility is beautiful and inviting to children. Gracie likes getting there early so she can get out of her wheelchair and into a colorful wooden car (with very little assistance).
I've only been back to work 2 days. It's good to be back. I truly believe my students missed me. They have greeted me warmly both days. Our family has been treated so well during this time. I can't keep on top of all of the thank-you notes I need to send out. That is such a good problem to have! The meals and gift certificates have been incredibly helpful. Gracie is not able to sit unassisted at this time so it's like having a baby in the house again in some ways. I'm scared to leave her side unless she's in her wheelchair or propped up somewhere with cushions or such. Falling and twisting her trunk would be very painful at this time. Until she heals, it's important for her shoulders and hips to rotate in the same direction. Cooking dinner right now is just a little more than I can manage.
Gracie has just started using her walker some again. She wants to hop right in it and go but her legs are just too weak. She can make it around the loop in our house. She is eager to be mobile again. Dr. Park expects it to take Gracie about 6 weeks to gain back her strength and endurance.

Home Almost a Week

We've been home from St. Louis almost a week and things are starting to get easier. Gracie's back is not as sensitive and she has not had any itching or pain in her legs since Thursday night!! After speaking with her neurologist here and getting his input about this problem with her legs, we started her on a drug called Neurontin. It is helping with the itching/tingling sensation Gracie is having in the backs of her legs. We hope she will only need this for a week or two. We have also given her some Benadryl, but we are careful not to give this around the time of her therapy so she won't get drowsy. I have been e-mailing another family whose son just had the rhizotomy in another state. His doctor actually started him on Neurontin before the surgery and he has not had any itching in his legs. It has been helpful (and interesting) to compare stories with this family.

Therapy has continued to go well. Gracie works very hard. That's good because she is determined to do the things she could do before surgery and doesn't like not being able to do something. She has been using parallel bars in therapy to help her legs get the feel for walking. Her legs muscles are still too weak for her to try this without the bars. Gracie is now comfortable sitting independently; she just wants someone nearby. Her favorite activity right now is taking a stroll around the neighborhood in her wheelchair. As much as I love her therapists and watching her progress in therapy, it is nice to have a break on the weekends.

It is hard to believe that Gracie will be 4 years old in five days! In some ways time has certainly passed quickly. Many of you have asked what we plan to do for her birthday. We usually have a large group of friends and family come to our house to help her celebrate. Because of her condition, we believe it might be best if we just invite family this year.

Getting into a Routine at Home

It is so hard right now to answer the popular question of how Gracie is doing. She is doing well in so many ways. She is giving 100% in her daily therapy and we are truly seeing daily progress. She even surprises herself with what new skill or movement she can do each day. Gracie is also improving in her endurance with her exercises. She is more willing to sit in different positions and for longer periods of time. Because of the generosity of all of you, I have been able to keep her attention while she stretches and sits with new toys, activity books, crafts, and DVDs. Because we want her close by, we have moved Gracie's bed into our bedroom. She is so thrilled about that! I continue to remind her that this is temporary.

We have had a few visitors. Gracie enjoys company because it gives her a chance to show off what she can do in her wheelchair. It also breaks up the day a bit. I have told anyone who wants to visit to please call first and to understand if you get here and she has a breakdown. Gracie has about 3-4 episodes each day where she just cries and claims to be itching. The itching is almost more than she (and I) can handle. It usually lasts about 20-30 minutes in the backs of her legs. She cannot get relief and begs me to scratch as hard as I can. We have tried many approaches to relieve the itching and/or redirect her attention or calm her. I spoke to someone in the neurosurgery department in St. Louis today about this. She said that some tingling in the legs has been reported by children who've had the rhizotomy but nothing like this. I plan to call Gracie's local neurologist and possibly her pediatrician tomorrow to get their advice. At this time, the severe itching is the worst part. When she is not itching, she is happy, energetic, motivated, and loving. I am thoroughly enjoying the time we are spending together.

Thank you all for keeping up with Gracie's progress!

Note: The pictures on this post are from the hospital. Gracie absolutely loved having her hair washed in a shampoo bowl! I definitely see spa visits in our future!

Getting Home

After the last PT session at the hospital on Sunday, we all drove home. Dr. Park prescribed Valium and Tylenol with Codeine for Gracie to take before we left and then once we got home, as needed. The drive went pretty well. Gracie didn't sleep but she was very calm and easy to entertain until we got to the Ashland City exit. She then became stiff and wanted to get home quickly.

Going into the last PT session, we all felt insecure, nervous, and sure that the hospital was discharging her prematurely. However, the last therapy session encouraged us all. The grandparents decided not to go the therapy in hopes that Gracie would not cry out for their attention and assistance. She did much better with just the two of us there. Gracie knows how much her grandparents love her and hate to see her upset, so she uses this to manipulate the situation sometimes. Seeing that she was able to be moved without crying made us feel better. She even got on her hands and knees and crawled a few steps at the end of therapy.

Getting home was exciting for us all, especially Gracie. We were welcomed with a couple of banners, balloons, dinner, and even flowers for Mother's Day! Once we got her inside, we weren't really sure what to do with Gracie. It felt a lot like coming home with a newborn. Currently, she is most comfortable in the bed, on her side or back. She has been in the hospital bed that had her propped up. We wanted to set up something like that here but she is also terribly sensitive to anything touching her incision on her back. Going to the bathroom is also quite an ordeal. Right now, this is something that takes 2 people to help her do. Gracie is extremely scared of falling forward, even when she is held tightly. This is due to the weakness of her trunk muscles from the surgery. We were warned that this might happen. She will need to rebuild her strength in many muscles as well as her confidence.

I am eager to get back to work when the time is right. My boss has graciously offered me a little more time at home to adjust before returning to work (half days). School gets out at the end of this month so I'll have all summer to spend with Gracie.

Visiting the Therapy Gym

Today has been a roller coaster of emotions. We have felt everything from excitement to fear to disappointment. I can only imagine how Gracie is feeling. At 9:00 this morning, Gracie worked with a therapist named Jenn in the therapy room. It is playroom full of toys and equipment that any child would love. Because Gracie had toured the playroom before surgery, she was eager to go back and play with many toys, especially the kitchen set. However, the process of moving Gracie from her wheelchair to the mat was scary for her. Jenn started with some simple leg exercises with Gracie on the mat. She wanted to have Gracie sit on the edge of a raised mat by herself next but Gracie was too fearful and cried. We tried to come back to that later but Gracie protested. Jenn moved the kitchen set near the mat for Gracie to play with while she and Nana help her upright. Because this would require Gracie to let go of her grip on the two of them, she did not want to do this. Last, Grandma and I practiced getting Gracie up. For the first month after surgery, we have to be careful not to extend her hips toward her back past a 90 degree angle. This could seriously hurt Gracie as well as rupture her incision spot. This makes us all very nervous. We are all acting like Hannah Montana's bodyguards when other people are around. There was one time when we had Gracie in the elevator and many people got in with us. One woman had a huge bag that looked very heavy. We were all ready to throw her to the ground if she swung around and bumped Gracie. That poor woman had no idea how closely we were watching her.

Gracie has complained about her stomach hurting throughout this entire process. She is prone to constipation so it could be that. She is getting medicine to help with this problem. There is also the possibility that she is faking her pain to keep us from making her work. When we returned for her second therapy session at 1:00, she was exhausted, crying, and not cooperative at all. We had to cancel the therapy. Again, she complained about her stomach. We are all expecting her back to hurt, so we wondered if she had just confused the stomach pain with back pain. She is insistent that it is her stomach though. We have left word with the nurse to get in touch with the doctor to see how we should proceed.

We know we shouldn't compare Gracie with other patients, but we can't help but notice the progress the rhizotomy patient next door has made. She is the same age as Gracie yet she was not nearly as mobile as Gracie was before surgery. She is alert, cheerful, and performing very well in therapy. She went down the slide today, hopped like a bunny, and hated to leave therapy. Gracie has another therapy session in the morning at 8:30. We pray it goes well. Ideally, Gracie will be discharged tomorrow at 11:00.

Getting into a Wheelchair

She did it!!! Gracie was visited by her second therapist who talked her into going for a stroll in her wheelchair. She tried her best to talk us out of it. Then she tried to convince us that she could do it herself. She finally gave in and allowed Michael, the PT, to coach Daddy on how to sit her up and move her to the chair. Although we heard lots of moans and groans, Gracie didn't cry when Daddy moved her. You will see Gracie sitting in her wheelchair in the picture. You will notice that her head is not upright. We were told that this is because she has been in bed for 4 days, not having to use her head/neck muscles. This should improve by Sunday. You will notice in the other picture that she is sound asleep in the wheelchair. The whole ordeal was so exhausting and emotional for her that it wiped her out! We moved her back to bed to rest. We all look forward to this getting easier on her.

First Therapist Visit

Gracie's therapist, Beth, visited her this morning at 9:30. With much trepidation, Gracie allowed her therapist to sit her up on the side of her bed. The idea of any movement still really scares Gracie. Another therapist, Michael, will come back to the room this afternoon at 1:30. He will teach us how to get Gracie up and into her wheelchair. This will be difficult. He will want us to practice a few times tonight because we will need to do it ourselves tomorrow. Tomorrow we will go to the therapy department in the hospital and have her PT session there, once in the morning and once in the afternoon. We are told that each session will be a little easier. If all goes well getting her into the wheelchair, we are going to take a stroll around the hospital. There is a beautiful rooftop garden here that is so peaceful and serene. We went up there with Gracie before her surgery; she is anxious to see it again. We hope this will provide just enough motivation to get her excited about about getting up.

I just spoke to Jackson Mayhall, an Oak Hill student I taught 2 years ago. He and his mother are in town visiting doctors. They are going to come by and see Gracie.

A Day of Major Progress

Gracie has made a great deal of progress today. This morning she was getting Valium, Fentanyl and Benadryl through an IV. She couldn't be moved without feeling pain in her back where the surgery was performed. She wouldn't drink or eat anything and had a catheter for the other end of the digestive system.

As of 6:00 tonight, the IV is gone, the catheter is out and she is drinking AND eating!!! She is able to move and the pain has decreased so the cocktail of Fentanyl and Benadryl are no longer necessary. Her pain is now managed through periodic doses of Tylenol with Codeine and she is still taking Valium for her muscle spasms.

We were able to move her enough to take her hospital gown off and put one of her favorite t-shirts on and she didn't complain about any pain in the process.

Dr. Park came by to see her and he was obviously happy with her progress. He said that tomorrow we will start the physical therapy at her bedside and hopefully by Saturday she will do her therapy in the physical therapy room.

She has been playing with the remote for her TV and her bed. She loves being able to raise her head up and down. She has received many balloons and she enjoys playing with them by pulling on the ribbons. The stuffed animals, Elmo and her new American Girl doll have been big hits and her grandparents have been using them as characters in the stories they tell her.

Gracie has also enjoyed all of the emails. The lady at the front desk laughed about the large number of messages Gracie has received. Thank you to everyone for making our little girl feel so loved.

In Our New Room

Gracie did not get much sleep last night, but she is still in a good mood this morning. She has already made a couple of nurses fall in love with her and she seems to amuse Dr. Park. She asked one of the other neurosurgeons this morning if he needed anything. He giggled. They have just taken her off of the Fentonal (pain medicine) and replaced it with Tylenol. It seems early to me but they say she is progressing just as she should and that this will allow them to remove the iv today. Her upset stomach is better but she still has no appetite. We are working hard to get her to drink. She still gets very upset when the nurses come to shift her because any movement in her back right now is painful. Her incision site looks great; it's about 2 inches long. They used a medical glue to close her back up.

Today is supposed to be the day when most rhizotomy patients really perk up. Thanks to many of you, we have a large bag full of various entertainment options!

Love from all of us to all of you!!

We've Moved!

The reason for the delay of information has been due to our stay in the PICU. They did not allow cell phones or computers in the unit, for good reason. We have moved to the 12th floor, specifically 12 East, Room 9. We are fortunate to have one of the few private rooms. We are seeing some improvement in Gracie. She has kept down a popsicle and a few sips of apple juice. We have been told that the sickness and irritability that she is feeling is because of the pain medicine, Fentenal (sp?). Once she is able to transition to a milder medicine, which will hopefully be tomorrow, she should feel better. Gracie complains of her legs itching and asks us to scratch them as hard as we can. We assume this sensation is the tingling inside of her legs from her nerves being cut and that she just thinks they are itching on the outside. Gracie's pain comes and goes right now. They come to shift her every 4 - 6 hours. This is hard on her and she is hard to calm down afterwards. I can imagine that getting her into a chair will be difficult as well. That is our goal over the next day or two. The physical therapist will be assisting us.
We are able to decorate the room where Gracie is now. We have many e-cards and greeting cards to hang on her wall. Please continue to send the e-cards; we enjoy sharing them with her. She has also received balloons and stuffed animals that have raised her spirits. In fact, when the bear and balloons were delivered today from my 2nd grade class Gracie said, "Awh, tell them that I love them."
If tonight is anything like last night, we will not be answering the hospital telephone. If you need to reach one of us, please call our cell phones instead. When Gracie is sleeping, she is most comfortable. Thank you for helping us with this.

A Long Night

We had a very long night last night in the PICU after Gracie's surgery -- vomiting, having some pain and wanting to go home. She slept very little. We are told to expect more of that today. We should be moved out of the PICU and into a long-term room late this afternoon.

Gracie has been receiving all the e-cards and loves them!

Thank you for your prayers. We continue to need them.

The New and Improved Gracie

The surgery is complete! Dr. Park said it all went well. He left our room smiling! We will not be updating the blog from the recovery room. I'm unsure if we'll be able to use the laptop from the PICU waiting room. Please pray now that Gracie will sleep restfully and pain free for the next 2 days. We will certainly upate the site once we arrive on the 12th floor tomorrow. Gracie's buddy, Lulu, also made it through the surgery. Notice her fashionable hospital gown!

Our Second Phone Call

We just received our second phone call update. We were told that Gracie went to sleep quickly and that the surgery is going well. They have finished cutting the nerves on one side and are now moving to her other side. She is about half way through! Once they are completely finished, Dr. Park will come out and talk to us. At that point Doug and I will be able to go to the recovery room to be there when Gracie wakes up. We have been warned that her face will be swollen because of being on her stomach for the surgery. The medicine they give her also contributes to the swelling. We will be with her in the recovery room for an hour or so. Later, she will be moved to the Pediatric Intensive Care Unit (PICU). Gracie will spend the night in the PICU tonight before being moved to Dr. Park's floor. The remainder of her stay will be there on the 12th floor with Dr. Park and his wonderful team.

Arriving at the Hospital

We arrived at the hospital this morning at 10:15. Gracie was met by many helpers and doctors. Megan, the Child Life Specialist, came in and talked to Gracie about her day. She did a great job preparing Gracie for surgery and what to expect afterwards. Megan was quite impressed with how prepared Gracie was, thanks to our friend, Julie. Gracie has become attached to a gorilla that Nana bought her at the zoo. She calls her Lulu. Megan dressed Lulu with a hospital bracelet just like Gracie's. Lulu even got her own hospital gown that we took off of the doll Julie gave her. They were both dressed for their big event. Gracie was given the medicine Versed (sp?) to help her relax. It worked very quickly! This medicine also helps her not remember the details leading up to her surgery. We gave her a million kisses and sweet whispers before they rolled her off to surgery.

We are all now hanging out in a private waiting room. They are supposed to call us 3- 4 times. They will call us first once they begin the surgery. We should receive that call any moment. Then, they should call once every hour during the surgery to give us updates. They warned us that today would be a long, hard day. We are sure that today will be hard on all of Gracie's fans, too. She is so loved. The only thing better than feeling love yourself is watching other people love your child. Thank you all.

Our Pre-Surgery Visit

Today has been a long and difficult day. We were at the hospital from 7:30 – 2:00 having evaluations, going on tours, meeting Dr. Park and his staff and completing the pre-registration process. We saw many other families with children with CP at the hospital. Again, this was somewhat comforting. Gracie was a true princess throughout the process today. She had several people examine her legs, her range of motion and her walking. She remained focused and cooperative.
Our meeting with Dr. Park was brief but informative. He believes Gracie is a perfect candidate for the rhizotomy surgery. He is very impressed with her present mobility and believes her independence and determination will benefit her greatly. He made speculations about how extensive her improvement would be, assuming the surgery goes as planned. He expects her to walk independently about 6 months after surgery. Dr. Park is unsure about how easily she’ll be able to get around independently outside, on unstable ground. She may require a cane to assist her. However, he is sure that the surgery will eliminate the stiffness in her legs and give her greater comfort overall. Dr. Park also expects the inward rotation of her legs to improve some as well as her posture, the positioning of her feet when they land and her transitioning to and from different positions.

We are expected at the hospital Tuesday at 10:15. The surgery will begin at 11:30 and it is expected to take about 3 or 4 hours.
To celebrate having completed this step of the journey, we took Gracie to Target to get a new toy and took the whole gang to the area’s best Mexican restaurant. We all felt better after a good meal and a delicious margarita. Feliz Cinco de Mayo!
We are now back at the hotel where our little “Eloise” is running back and forth between our rooms wearing her majestic G cape. The cape was an encouraging gift from our dear friends. It was given to Gracie the night before we left, with a poem telling Gracie how brave and courageous she is. She wears it proudly.

Fun at the Zoo

It was a beautiful, sunny day so we packed up all of our gear and headed to the zoo. The zoo here has gorgeous landscape and amazing animals. Like our zoo at home, they’ve done a lot to build up the exhibits to resemble the animals’ natural habitats. Also like our zoo at home, Gracie’s favorite spot was… the carousel. She rode 5 consecutive times! Gracie also enjoyed all of the beautiful waterfalls. We saw many animals in the 4 hours we were there and I don’t think we even saw a third of the zoo. My students will be happy to know that we saw both monkeys and penguins!
Grandpa arrived today. After we left the zoo, we met him at the hotel for a short rest and then we went out for dinner. We tried one of the local favorites, toasted ravioli. We also hear the gooey butter cake is something we must try while we’re here. We headed back to the hotel for an early night since we are supposed to be at the hospital at 8:00 in the morning. Tomorrow we will go to meet with the doctor, have a pre-surgery physical therapy session, meet with a Child Life Specialist, and walk through the area where Gracie will be. Tomorrow they will also let us know what time we need to report for surgery on Tuesday.
I am sitting in the lobby writing this entry because that’s where the wireless connection can be enabled. A mother just walked by with her child who obviously has CP. She looked to be the same age as Gracie. It is oddly comforting to see another family going through a similar experience. I suppose we might even see her at the hospital this week.
Thank you all for your phone calls, cards, emails, comments, and especially your prayers.

We've Arrived in St. Louis!

We drove through rain and thunderstorms but made it safety to our hotel in St. Louis Friday night. Having fallen asleep during the drive, Gracie was excited to wake up in a new city. Our "Little Eloise" loves staying in hotels.

Saturday was a full day. Saturday morning we explained the reason for our trip to St. Louis to Gracie. We told her about the surgery she was going to have, her stay at the hospital and that one day she may walk without her walker. Her reaction was, surprisingly, one of excitement. She wanted to go have the surgery right then and there!

With that daunting task behind us and all in great spirits, we were off to see the arch. Gracie enjoyed the long trip up to the top and looking out over the city. Later, we joined some friends, Chip, Tracy and McKenzie Collins, at their family's farm for some fun and dinner. Gracie and McKenzie rode in a horse drawn cart and took turns riding a pony. What a treat!

More to come. Thanks for checking in on us.