Kaitlyn's progress

September 8, 2008

Hi everyone,

Just wanted to give you a quick update on Kaitlyn. She is doing better. I've been able to work parttime and leave her alone. She is able to get up and down on her own again. She has found that she can sleep in her own bed and the recliner sometimes, and not be on the couch all the time. Kaitlyn's pain level had decreased and she is taking a lot less medication. This is helping her get her appetite back. She is able to eat a little more at each meal. I'm still having her eat every few hours to keep the calorie count high each day. Being back at work is helping me not eat everytime she needs to eat.

Kailtyn started school this week and that seems to be going well. She misses seeing her friends at school, but I'm sure she is keeping in contact via the phone and computer. She is striving to get the credits she needs and gain her strength to be able to attend regular classes during the second semester of school. I've warned her not to get hooked on soap operas during the day. She seems to be hooked on Family Fued and some other game shows during the day. At least that's keeping her mind busy and alert.

She has also enjoyed reading some of the books that she received from friends lately. For a long time she wasn't able to read books because she was on too much medication to concentrate on them, but she is really enjoying reading them now. Thank you to everyone who got her books!!! She is also enjoying the puzzle books that she received. I have to admit that I did some of the puzzles that people got for her. Some of those were really hard and I had to go back to work to think that I was smart again. ;-) I think some of them were hard because I wasn't getting much sleep during the time I tried them. That's my story and I'm sticking with it...!!!

Kaitlyn's mobility is also improving. It's nice to see her not be as afraid of moving her back. It doesn't seem to hurt her as much when she moves now. She said that it feels weird that some of her back is completely numb. This doctor's said that this is because the nerves were cut. They said that it can be temporary or permanent. We are hoping and praying that the feeling will come back soon.

We went to see Sisterhood of the Traveling Pants movie this week. I carried in two pillows to put on the chair for comfort. I have to admit that this was the first time I took pillows to a walk-in movie. Not too many people stared at me. ;-) Kaitlyn sat through the entire movie, but was really tired and slept most of the next day. It was fun to get her out of the house, though.

Thank you everyone for your words of encouragement and support!!!!

Ruby

August 26, 2008 - Progress Report

Hi all,

Kaitlyn went back to Shriners Hospital today to have an early check up. We thought she might have had an infection because there were a few bumps around the incision site that we hadn't noticed before. Kaitlyn was having sharp pains in those areas. Well, the good news is that it was not an infection. Praise God!! They were bumps caused by the end of the ribs that were cut. We hadn't noticed them before because her back was swollen. As the ribs continue to grow, the pain will change and the bumps should be less noticeable.

Kaitlyn switched to a lower level pain medication, which is a good sign that the pain level is decreasing. She is still taking more medication than someone her size normally takes. Kaitlyn is still in pain most of the time, but it is getting better. Her stomach was bothering her because of all the medication. She lost 9 pounds in the last 8 weeks. The doctors are concerned about her weight loss because this took her down to 81 pounds. She is back on a two hour feeding schedule (during waking hours), with high calorie/high fat foods. This is not good for me as I have very little resistance to the foods I'm giving her.

At times, she is not able to get herself up or turn her body on the couch like she was able to do a week ago. The doctor assured me that this is normal because her body is changing. Kaitlyn is learning what she can do without causing too much pain and trying to stay active part of the day without overdoing it, so that she is in bed the following day. It's been a fine line, but we are learning.

Kailtyn's doctor said that it would be about 4 more weeks before I could leave her for more than a few hours at a time. I am starting back to work part time next week in order to keep our medical coverage and cover future expenses. I will be working a split shift, so I can come home and check on Kaitlyn at lunch time for a few hours. We truly appreciate our family and friends that have helped us with expenses (including food and other items). I don't know what we would have done so far without you!!!

Kaitlyn was happy when the doctor reiterated that she shouldn't be doing any housework, or lifting anything more than a few pounds. I told her that there would be plenty to do when she's feeling better.

She starts independent home study next week and we are hoping that she has the energy to stay awake and complete what she needs to each day.

Please keep her and our family in your prayers. We appreciate it!!!

Thank you,
Ruby

Hi everyone,

It's been awhile since our last post. This last week went by extremely fast. I've been trying to catch up on stuff around the house and sleep. Kaitlyn has had some good days and some not so good days. Sometimes her pain level is really good and sometimes it gets really high and takes hours to get back under control. She is able to move from her back to her left side and back again most times, so I have been able to sleep 4 hours at a time. She can get off the couch by herself most of the time. She has cut back on the pain medication to just 1 pill every 4 hours instead of 2 pills. She has also cut back on the a muscle relaxer. The scars on her back are looking much better and she is now able to lift her right arm without too much pain.

She is gearing up to start school right after Labor Day. She is still tired most of the time, but is getting stronger each day. Whenever she gets up and does something for an hour or so, she then sleeps for 3-4 hours. Riding in the car is much easier than before.

We wanted to thank everyone for their support during this time. I don't know what we would have done without all of you!! We know that we are blessed with some amazing people in our lives. Thank you!!!

I will post pictures later.

Ruby

New Pictures!

Hey guys! It's Kaitlyn. Lately, I've been in a lot of pain, so I haven't been able to sit in a chair for very long. I'm feeling almost pain-free for the moment, so I thought I'd post some of the pictures of my stay in the hospital, and also the pictures of visitors I've had since I've been home. I was finally able to get out and take a walk in the park, so I'll show you a picture or two from that adventure, too. Thank you to all of you who have been praying for my recovery and keeping up on the blog. It means a lot to see all the comments from you guys.

Check out my mom's post from today for more information.

Road Trip and Information

Hi all,

We finally made it out of the house Sunday afternoon. We took a short trip to William Land Park. It was great to be outside. Rick came along with us just in case Kaitlyn fell again, as I am not able to get her up by myself from the ground. The weather was perfect and there was a gentle breeze. Kaitlyn walked about a half a mile. We sat in lawn chairs (Kaitlyn had pillows behind her) for about an hour. Kaitlyn took a book to read, but we mostly just talked. We probably did a little too much in one day because she was really tired and sore afterwards. Next time we'll do more sitting and a little less walking, but it felt so good to get her out of the house.

Yesterday, she had some friends from school come over. They watched a movie and Kaitlyn shared her stories about the hospital. The girls were talking about school starting. Kaitlyn will be doing independent home study for the first semester of school to allow her to heal more. She doesn't want to be bumped in the hallways and doesn't feel like she can keep up with a normal schedule for school right now. She will miss her friends and the social part of school, but I'm sure she will keep in contact with her friends via the computer and phone.

It has been 3 weeks since Kaitlyn's surgery and she is doing as good considering the extensive surgery. Some people have been asking exactly what Kaitlyn had done to her back, so I thought I would share (now that I understand it a little better, too). Kaitlyn had one rib fully removed. That rib will not grow back. The doctors cut out sections of 5 ribs in order to hammer those ribs back into place. They will eventually grow back together. Before the surgery, Kaitlyn had a hump on her right shoulder. That hump is now gone!! Praise God!!! Then metal rods were placed on each side of her spine from the top of her spine to just before the lumbar area. The doctors were amazed that once the top of her spine was aligned that the bottom part just corrected itself. This is great news because Kaitlyn will be able to bend at the waist and still grow in that area of the back.

Through prayer, Kaitlyn overcome obstacles during the surgery and in ICU. I did not mention them before because I didn't want people to worry, but wanted to share them now to let you know that your prayers were appreciated and answered. I also wanted to share to let you know that Katilyn is doing wonderful after going through all she has gone through. It will also explain to people why Kaitlyn was in ICU for longer than expected.

During surgery, Kaitlyn's lungs collapsed and she had drainage tubes placed in each lung area. She was only able to breathe at 250 ml instead of the 1000-1250 ml, that she was able to before surgery. She had a team of respiratory specialist and a special machine to help her lungs get stronger. She was able to breathe at 750 ml as she left the hospital and is now up to 1000 ml. Her lungs are getting stronger each day. Prayers are being answered!!

She also lost a lot of blood during surgery. Two days after surgery she required two more units of blood because her blood pressure was extremely low (65/49) and her blood counts were also low. Kaitlyn's IVs were not working properly and it was difficult to get her the liquids she needed. One of Kaitlyn's good friends, Rachel, who was visiting her, was amazing as Kaitlyn received units of blood and had IVs burst. I would not have been able to do that in my teen years. I'm in the legal field because I don't like the sight of blood. Rachel, answered prayers, and other people got me through that day!!! Thanks again, Rachel!!

Kaitlyn also stopped beathing the morning before getting out of ICU because her airway was blocked. Her lungs were not strong enough to cough up the stuff still in her throat from the surgery. I was able to convince her nurse to just suction the stuff out and Kaitlyn's condition got so much better. That was a tough morning and prayer really got me through!!

I share all this to let you know that I'm proud of Kaitlyn for going through all of this and not complaining about her situation. The only time she complains is when she is in too much pain. She has been a real trooper through all of this.

Once Kaitlyn is feeling better, she will post some more pictures.

Ruby

August 8, 2008

Hi all,

Kaitlyn wanted to post yesterday, but she just wasn't up to it. She took a hard fall while walking back to the couch and landed on her bottom. We're not sure why she fell because there wasn't anything in her way and the floor wasn't wet. Sometimes we call her "Little Miss Graceful" and I'm sure you can figure out how she got that name... ;-) She has been dizzy at times, which is probably because of the medicaiton. She seems to be doing fine and it doesn't seem to have done any damage to her back. Praise God!! However, the fall did cause her pain level to go back up. She is taking it easy today and hopes to post something herself later today. Please pray the her pain level goes back down and that we can cut back on her pain medication again. Kaitlyn is wanting to get out of the house. We are going to try a small road-trip tomorrow and maybe a walk in a park.

Until later...
Ruby

Blessings!

Hi everyone!!

I just wanted to let everyone know that we are feeling very blessed right now. Even though Kaitlyn is still having a tough time doing things, that used to come very easily, we are both feeling blessing and wanted to share our gratitude for all the love and support we have been receiving. Last night I was able to sleep the entire night because our good friends, Margy and her daughter, Katie, spent the night. Margy was a great surrogate "Mommy" and helped Kaitlyn move every two hours and gave Kaitlyn her medicine during the night. It felt so good to be able to sleep all night long. Thank you!!

Kaitlyn, Alex and I also wanted to say thank you to the wonderful people who have been making us very delicious meals. That has been so helpful. It gives me more time to rest and spend time helping Kaitlyn. The comments, cards and special gifts have made Kaitlyn's days brighter. It helps her to focus on the good things in life. We feel very blessed to be surrounded by loving people!!!

Also, a special thank you to Laura and Renay for coming over and watching Kaitlyn at separate times, so that I could get out for a little while and take care of stuff that I needed to do. Also, a special thank you to Rick for running errands for things we need. Thank you!!!

I feel as though I have an infant again, that can not be left alone. Kaitlyn has been really good most of the time. She has been saying thank you for everything that I do for her. This is not typical for a teenager!!! I'm enjoying spending time with her while she recovers.

Yesterday, with the help of her friend, Katie, Kaitlyn was able to walk down to the end of the street. She didn't want to go outside until yesterday, but she finally decided it would be good to get outside. She is nervous about a dog running up fast and having to run. It is still hard for her to breathe very deep, but it gets a little easier every day. Her lung capacity has really increased this week.

Feel free to visit Kaitlyn, but please call first to make sure that she will be awake and that she is not in too much pain. Thanks again, Ruby

P.S. Kaitlyn is going to try to post more tomorrow and add more pictures.

Hello, everyone.

It's Kaitlyn! I'm finally able to sit in a chair and post a blog for myself. A big thank you to Jill for keep up on the blog while I was unable to update you all on my progress. We couldn't have done it without you, Jill! For those of you who have been keeping up with the blogs and leaving comments, I thank you all as well. It was very encouraging to hear from all of you, even on the days I wasn't really up to having visitors. Although I'm still not back to my normal self yet, I thought it would be a good idea to let you all see just a glimpse of all that went on in the hospital. Here are a few pictures of me before and after the surgery, and during my recovery in ICU, the normal patient floor at Shriner's, and back here at home.

Kaitlyn

August 1, 2008

Hi all,

Sorry there haven't been any posts for a few days. I thought that once Kaitlyn was home it would be easy to sit down and post, but we have been on a 2-hour schedule to move Kaitlyn's position and a 4-hour schedule for medicine. I never thought I would be on an "infant-type" schedule like this again, but it is bringing back memories. Kaitlyn and I are spending a lot more time together than most teenagers and their parent. It has been good. She requires a lot of help to do simple things that use to come with ease (eating, getting dressed, showering, standing, sitting, walking, turning over in bed). She has had a great attitude, but gets frustrated that she can't do these things on her own.

Kaitlyn is doing better each day. She has been encouraged by all the love and support around her. She wanted write her own post today, but just wasn't up to it quite yet.

I am happy to report that her back is much straighter than it has been and she is glad about that. She says that it doesn't feel right yet because she was used to it the other way, but it feels better each day. Kaitlyn is resting a lot and gets up each time she is awake to move around a bit. She is happy to be home and not have people waking her up all the time.

A special thank you to my friend, Jill, for keeping everyone posted while we were in the hospital!!! Also, for coming and spending a night with Kaitlyn when I so needed rest. Thank you also to everyone who visited and brought smiles to Kaitlyn!!! Thanks for understanding when Kaitlyn didn't want to see anyone when she was having a bad day. Thank you for the comments that Kaitlyn was able to read even when she didn't feel like seeing anyone. Thank you to the visitors who were able to make Kaitlyn laugh and open up her lungs. There are so many other things that we are thankful for, so if I didn't mention them, please know that we are still grateful.

I will post more tomorrow and share some of Kaitlyn's thoughts as well. I also hope to post some pictures of Kaitlyn's journey. I'm not quite sure how we did that before, but I'm sure my son can show me how tomorrow.

Thanks again, Ruby

Going Home!!!

Ruby just called and said Kaitlyn is going home at 10:30 today. Her pain is under control. She is up walking, going up and down stairs, eating, and is excited to go home. Praise God for answered prayer. Yesterday was a rough one, her pain med wasn’t working and she was actually in quite a bit of pain. After prayer and a change in her pain meds she had a drastic turnabout and is now going to finish her recovery at home. This will probably be the last blog I do. Ruby or Kaitlyn will probably take over from here. Thank you for all of your kind comments and support. Remember, I am still coordinating meals, errands, and general help for Ruby.

Kindest Regards,

Jill

Visits Welcome

Kaitlyn is doing well. She misses her friends and would love everyone to come by and see her. A nice visit goes a long way to cheer her up. Ruby reported that she walked around the 2nd level in the hospital yesterday. Some of the doctors at the hospital are saying she is ready to go home. They can’t get her pain level down below a 5 though. Her muscles are spasming due to shifting around and previously not being used. Ruby continues to spend the night in Kaitlyn’s room and is by her side most of the day. I would like to start scheduling meals to be brought to Ruby once Kaitlyn is home. If anyone would like to help out please e-mail me with a date and what meal you will bring.
Continue to pray for Kaitlyn’s pain to subside, her strength to build and her energy to grow.

Be Blessed,

Jill

Nothing But Good News

Kaitlyn had her first day in a regular room. She walked down to the elevator and back. She also went down for x-rays and was able to stand for those. Her pain level is tolerable and she is continuing to heal nicely. She is ready to have visitors now. Ruby is getting rest now and is much more relaxed now that Kaitlyn is in her own room. One of Katie’s favorite nurses from ICU was able to be her nurse yesterday so that was a nice blessing. Great news all around.

Answered Prayers

And whatever you ask in My name, that I will do, that the Father may be glorified in the Son. If you ask anything in My name, I will do it John 14:13-14

Ruby called to let me know that Kaitlyn got up and walked for the first time this morning. She walked around the nurses station and back. They are going to send her to a regular room now. Her pain is under control now and Ruby said "Remarkable change since yesterday when everything was going wrong." Thanks again for your continued prayers.

Jill

Renewed Strength

Yesterday afternoon Kaitlyn's breathing improved. Her pain is now under control. I spent the night with her last night so Ruby could get some needed rest. Katie had a wonderful night. She hardly woke at all. They took her off the oxygen and her IV is doing better. I believe today will be the day for her to say goodbye to everyone in the ICU ward. She was smiling this morning and more alert than she has been since the surgery. Ruby was able to read all of your comments to her last night. It really lifted Kaitlyn's spirits. Thank you all for your prayers! I will post something later today after I get some sleep :)

Jill

Prayer is Everything

Please pray for protection around Kaitlyn and Ruby. Pray for her lungs to experience a miraculous recovery. Pray for her to get strong, breath clearly and get all the oxygen she needs to recover. Pray for God to send a caring staff to help her. Pray for Ruby to have peace and calm.

Jill

Prayer Appreciated

Well, Kaitlyn did not have a great day. Her night last night was not a good one and now all day today she had various difficulties. She has a multitude of tubes and some are uncomfortable and not cooperating with her movements. Mainly she is in a lot of discomfort which is expected but still doesn't make it much easier to deal with. Ruby has been helping her all day with communicating her needs to the nurses. That being said, please take time to pray for Kaitlyn. Worry about nothing Pray about everything.

At this point she will most likely be in ICU for a few more days unless the Lord intervenes. On a brighter note, she did have some victories today. She sat up in a chair for an hour. They removed the feeding tube that was in her nose and an IV (one of five). There is gradual progress, and Kaitlyn is toughing it out.

Jeremiah 33:6 says "Behold, I will bring health and healing; I will heal them and reveal to them the abundance of peace and truth".
Let's all stand on that promise from God for Kaitlyn.

Blessings,

Jill

Kaitlyn Looks Wonderful

I visited Kaitlyn last night. She looks wonderful! She is smiling and talking a little. She is heavily sedated so she goes in and out a lot. Her pain is being managed very well so she will heal. She sat up for 15 minutes yesterday and stood for a few minutes. As you can imagine, it was painful and she was a little cranky with the nurses and mom, but she was still a trooper. Please continue to keep her in your prayers.

Jill Goodnight

Remarkable Progress

All the nurses and doctors in ICU say Kaitlyn is making remarkable progress. They are going to try and get her to sit up today and perhaps stand. She may even get to eat today, her body is doing so well. Ruby spent the night with Kaitlyn in ICU and she is impressed with how Kaitlyn is handling this. The staff has been very helpful, Shriner's is such a wonderful hospital. She is doing just great! Not quite ready to see anyone though. But knows you are all praying for her speedy recovery. Thanks to Debbie Kick at KMTG for loaning a laptop so Ruby can check this site and read the comments to Kaitlyn. Thanks to Arla Hoagland with Girls Ministries at CCC for loaning a CD player.

Kaitlyn's Favorite Things

I asked Ruby to get a list of Kaitlyn's favorite things in case people want to bring her "goodies" while she is recuperating.

Favorite Books: Any kind of novel
Favorite Colors: Green, Blue, Orange
Favorite Foods: Pasta, any little snack type things. FRUIT! Chicken, pizza, mexican food, salads, fish, veggies
Favorite Fast Food: In and Out/Cheeseburger meal, McDonalds/Big n Tasty, McNuggets, Taco Bell/Bean Burrito
Favorite Jamba Juice: Mango-a-go-go
Favorite Ice Cream: Chocolate Chip Cookie Dough or Vanilla
Favorite Starbucks drink: White Mocha hot or iced
Favorite Quiet Activities: Reading, playing cards, listening to music (need to borrow a portable cd player)
Favorite Music: Any kind except Country or Rap/Hip Hop
Favorite Drink: Iced Tea (sweetened), orange juice (no pulp)

SUCCESS ! ! !

I just returned from Shriner's where Kaitlyn is in post-op. The doctor's said they couldn't have done a better job. They are very pleased with the outcome of the surgery. They removed several of Katie's ribs in front (which will grow back). They also removed six discs in her upper spine, then fused it with a rod. Her lower back was not involved so she can still grow and have movement. She should be in ICU for a few days then moved to a regular room. She is heavily sedated but the doctor said she was smiling and moving her legs. Ruby said Katie was a trooper this morning and was very brave. As soon as I have more information I will post another blog.

Jill Goodnight

Sweet Dreams Kaitlyn

Kaitlyn is all tucked in for the evening. Her friend that had the same exact surgery stopped by to encourage her and let her know what to expect the next few days. The hospital brought in a bed for Ruby so she can be right by Kaitlyn's side all night. Kaitlyn will be in pre-op at 6:45am with the surgery scheduled to begin at 7:30. The surgery is expected to last 8 hours. I know you will all be thinking of her tomorrow, I will be there with Ruby for "female" support all day and will go home to enter in a blog as soon as Kaitlyn is out of surgery. I know many of you wish Katie well and would love to send flowers etc. Unfortunately the hospital only allows mylar balloons. Cards with a note are always appreciated. I close this blog with: Always be full of joy in the Lord. I say it again - rejoice!

Jill Goodnight

Entering Hospital Day.

Hello, everyone! It's Kaitlyn. We're about to head off to church, and after that, we are heading straight to the hospital to check in. Thank you all so much for the comments that you have been leaving me; they are very encouraging and I enjoy reading them. Please keep checking this website for updates on my progress as I go through the surgery and my recovery afterward.

Thank you all!

Kaitlyn

Caring Friends

I have the privilege of coordinating the friends of the Blackwood family during Kaitlyn's surgery and recovery period. I know many of you would like to help out any way you can. Please contact me either by e-mail or cell phone to let me know if you would like to run errands, do chores, bring meals etc. I will then let you know when you are needed. By using this blog site, I will update everyone regularly with news on her recovery and needs. Kaitlyn is already enjoying the comments you have posted, all your kind words let her know just how much everyone cares. I have a list of her favorite things that I can share with anyone that would like to cheer her up. Kaitlyn has a strong faith and trust in her Heavenly Father, knowing that He will be with her during this season of her life as He always has been and forever will be. Let's rejoice in ALL THINGS.

Jill Goodnight
cell: 916-717-3116
e-mail: jgoodnight@ckr.com
e-mail: goodnightjill@yahoo.com

Kaitlyn's story

In March 2005, at the age of 13, Kaitlyn was diagnosed with scoliosis. She had a 10 degree curvature of the spine. Her doctor said to just watch her spine and that most people who have scoliosis don't progress much past that degree. Kaitlyn's back did not change much until November 2006. At that point she had 2 curvatures that were between 30 and 35 degrees. She started wearing a hard plastic back brace for 23 hours a day. This was not an easy time for her. The brace was very constricting and painful.

Over the next 6 months Kaitlyn wore the brace and saw a chiropractor. Her curvatures went down to the 25 to 30 degree range. We were hopeful that this would continue to decrease. Around the same time Kaitlyn grew and was sized for her second back brace. This one was more constricting and more uncomfortable. During the growth the curvatures increased to around 40 - 45 degrees. Her doctor told us that there was a possibility that she would need to have surgery to correct her spine.

By April of 2008, her doctor told us that Kaitlyn would need to have surgery by this summer as the curve was starting to affect her heart and right lung. Kaitlyn was very tired from dealing with pain and not being able to take in enough oxygen. At times the pain was so bad that she wasn't able to go to school or other activities. She was starting to have trouble concentrating. By this time her curves were in the 50 degree range.

We scheduled surgery for July 21, 2008, with hopes that the curvatures would decrease and she wouldn't have to go through surgery. When Kaitlyn returned to Shriners Hospital for a pre-operation appointment in June, it was discovered that her curvatures had gone to around 75 degrees in a very short period of time.

Her scoliosis surgeon told us that he would need to bring in another specialist to also operate on Kaitlyn and that everything we had planned would be doubled (two surgeons, longer surgery, longer in ICU, longer in the hospital and recovery time). We have made plans for all of this with hopes and prayers that each of these things will go smoothly and that Kaitlyn will heal as quickly as possible. We are standing in faith for complete healing.

This week Kaitlyn is preparing to check into the hospital on Sunday, July 20th and having surgery the morning of July 21st.

We have a friend who will be updating this blog whenever we are able to give her new information.

We will be checking the blog when we are able to, so please leave comments for Kaitlyn and her family to read for encouragement.

Many of you have offered help in many ways. Our friend, Jill Goodnight, has offered to coordinate our needs during this time. If you would like to contact her for schedules of what is needed (meals, errand running, visits, help with Kaitlyn after she is home, things to keep Kaitlyn entertained, or anything else), please feel free to contact Jill at:
916-717-3116(Jill's cell phone)
jgoodnight@ckr.com(Jill's work email)
goodnightjill@yahoo.com(Jill's personal email)
Kaitlyn is scheduled to be in the hospital 10-14 days(3-4 days in ICU)

Thank you,

The Blackwood Family