Katie's doctors appointment- Looking good!

First off, I want to apologize for not updating the blog last Thursday. I had every intention of doing it, but Katie's doctor appointment was moved up and so I wanted to wait until after that was taken care of to update the blog.

Katie was originally supposed to go up to Barnes for a doctors appointment in the middle of March, but they moved up her appointment because someone had canceled their's. So, last week my mom took Katie to her appointment and the drive up there and back went good for them and they did not have any trouble. When they arrived at the hospital for Katie's appointment, they brought her to a room because she had to be an in-patient for some of the testing. My mom said that once they got off of the elevator and onto the 11th floor, where Katie's room was, everyone wanted to come see her. Many of the nurses and techs who had helped take care of her while she was there a few months ago came by to visit and see how she was doing. They wanted to "actually meet:" Katie too, because even though they took care of her while she was there she was not herself and did not communicate with them very much. Also, she was not able to really talk during that time either. My mom and Katie also met with her doctor and she told my mom that she knew Katie had improved, but she did not think she had improved as much as she did. The rest of the staff was also very impressed with Katie's progress since she had been released from the hospital.

While Katie was an in-patient at Barnes they did a sleep test on her because she talks a lot in her sleep and she moves a lot too. Sometimes while Katie is sleeping she will move her legs like she is running. After doing the sleep test on Katie the doctors said that she has a condition that when she goes into her deep sleep her muscles do not completely relax. Now, when the majority of us get into our deep sleep all of our muscles completely relax and this is should be what happens. However, Katie's muscles are not doing this right now and that is why she moves so much when she is asleep. It is something that will go away though eventually and she will be fine. They also told us that she does not have to take one of her medicines any more except at night. The medicine that she is taking is to help her to be calm and not to get agitated at everything. Since she is improving and doing well they said she only needs to take it at night and not during the day. The only reason that they want her to take it at night is to help her relax so that she might sleep better.

The next day Katie was an out-patient and that day she had an MRI and CAT Scan done. We are still waiting on the results, but Katie did well through both of these test, along with everything else she had to do while up at Barnes. Everyone was impressed with how much she had improved since they had last seen her. If the tests all come back good then Katie will not have to go back to Barnes for six more months. If something comes up in the test then the doctors will tell us what steps we need to do next. Please pray that all of her test come back good! It would be a wonderful thing for her tests to come back good so that Katie does not have to go through any more.

Thank you once again for keeping updated with Katie's condition and continuing to pray for her. God definitely has heard every single prayer and has been with Katie and our family through this whole entire time. Also, thank you for the support and encouragement you have shown are family and Katie. It has helped us get through this difficult period in our life and shown us how blessed we are to live in a great community, have such an amazing family and friends and a great church family. God has been so good to us by placing all of you in our lives and we are truly grateful.

I hope you have a wonderful day and please be careful if you have to get out and drive in the snow and ice. For the rest of you have a great snow day and enjoy it, because that is what I am doing!!!

Zephaniah 3:17 (NIV)- "The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing."

Katie's improving each day!

Hello, everyone! Thank you for your continuous support and prayers for our family and especially for my sister! Katie is doing pretty well right now. She has been going to therapy about four days a week and while she is there she does physical therapy, speech therapy and occupational therapy. I think physically she is almost back to normal. There might be times where she becomes a little off balance or unsure of herself, but other than that she can do just about anything she could before. She is still needing some help with her speech. She is not having trouble saying the words, but more with the types of words she uses. An example of this is she will say mommy instead of mom. So the therapist is working with her on using language that is more appropriate to her age. If you have talked to her she does not use as wide of a vocabulary as she could. It is not that she cannot do it or does not want to, she just needs to relearn this part of her life. She has been improving throughout the weeks though and that is a positive note. Then, she is doing well in occupational therapy, but she still needs to relearn several things and that will just take time. She is progressing each and everyday though and that is all we can ask for. We also have to remember that God has been by her side through all of this and helped her overcome this much of this disease and he will help her through the rest of it!

I am going to try and update the blog every Thursday because that is the best time for me and now that Katie is back at home and doing therapy it is a little slower of a healing process; therefore, I do not need to update the blog as constantly as before. I do want to keep everyone updated though and that is why I am going to update it every Thursday. I am also going to try and find more information about the disease so that I can share it with all of you, so that you can have a better understanding of what happened to Katie. I am learning that more and more people are getting this disease and I want to share as much about it as possible, so that others will not have to go through what Katie did.

"You never know how strong you are until being strong is the only choice you have."
"Blessed is she who has believed that the Lord would fulfill his promises to her."- Luke 1:45

A little update

Katie has been doing very well since she has been back home and we can definitely tell that she is glad to be home. She has been going to out-patient therapy and that has been going well for her. She seems to like it pretty well and understands that it is to help her get better. Katie can also talk very well now, sometimes she does have to think about what she is wanting to say, but it happens less often than before. Then, physically Katie is doing great! She can do pretty much anything she wanted to before. Katie does still have difficulty with certain things and it is kind of like her mind is in an innocent child-like state. She is very blunt about things and does not usually think about what she is saying, but just says what she thinks. However, that is part of the process and she will gradually get back to being her normal self. Katie also has some issues when it comes to sleeping. For example, she talks ALOT during her sleep and she kicks her legs like she is running. The doctors say that that is normal and it will slowly go away. On another note, we got Katie's crown fixed and that is all taken care. In addition, Katie does not have to go to the Barnes hospital again until March, unless something happens between now and then.

Today I read on the facebook page (anti-nmda receptor antibodies encephalitis) that people who get this disease tend to have it during the fall around September- November. I commented on it and said that is when Katie's started and many other people said the same thing. So I thought that was interesting and wanted to share that. If you are interested in learning more about this there are several facebook pages about this disease or people who have had it.

Thank you for your continuous prayers and thoughts. It means a great deal to us and we are soooo thankful.

"Don't tell me the sky is the limit, when there are footprint on the moon."

"Always pray to have eyes that see the best in people, a heart that forgives the worst, mind that forgets the bad and a soul that never loses faith in God."

Being back at home!

Katie has been adjusting very well to being back at home. She is really happy that she finally got to come home and just relax. She has also been able to see a lot of family and I think she has enjoyed that very much. She still has her appetitie because she can eat all day if you let her! It is okay though because many people with brain injuries do tend to eat a lot because their body and brain does not tell them that they are full. So, sooner or later Katie will go back to eating like she used to. Katie was able to get out and about this past weekend! She went to church on Sunday and she enjoyed seeing everyone and vice versa. She also got to go out to eat with the family and she had a great time there.

Katie went to her regular doctor this week, just for a follow up and everything seemed to be good. The doctor did not find anything out of the ordinary or wrong. Katie also went to the dentist the other day to get her crown replaced. The reason they said her crown fell out was because her teeth had moved because of the grinding she did, while in the hospital (and she could not control the grinding at the time). The dentist put in a new crown, but unfortunately it fell out, so now we are waiting to see what to do next.

Thank you again for keeping Katie and our family in your thoughts and prayers! It means the world to us and we are very thankful!

"Nothing is impossible, the word itself says 'I'm possible'"- Audrey Hepburn

"Believe you can and you're halfway there"- Theodore Roosevelt

"It is during our darkest moments that we must focus to see the light"- Aristotle Onassis

Katie's coming home a week early!!!

Katie is coming home tomorrow! The staff  at MRC and the at the insurance company have discussed it and decided that Katie is well enough to come home tomorrow (January 11th) instead of next week. She has done an excellent job in her physical therapy and her therapist is very impressed with how well she is doing. She is also doing good with her occupational and speech therapy, but she could still use some more help in those areas. However, she is doing good enough that she is able to come home! She is very excited about getting to come home tomorrow and has been telling all of the other patients and staff here at MRC about going home.

Katie also had a crown fall out of her mouth and will be going to the dentist within the next week. It fell out the other day when she was eating some Mike n Ikes. While she was at Barnes she had grinded her teeth a lot unintentionally and could not stop herself from doing it because she did not have control of her body at that time. So we think that had a lot to do with it falling out. She has been doing fine the last couple of days and has not complained about it hurting which is a good thing. 

Now, Katie was suppose to be going back up to Barnes Hospital here in the next week in a half but for some reason, that we do not know yet, the staff up there canceled her appointment. So right now we are not sure what will happen next. We do know that she will need to go see the doctor in order to find out what the best and next move for Katie is. Right now some of the faculty here at MRC is getting a hold of the staff at Barnes, so that we can determine what our next step should be. I just ask that you will pray for all of this to go smoothly and that we will be able to clear this situation up and figure out what we need to do for Katie.

Thank you again for all of the thoughts, prayers and support that you have shown our family! We appreciate it very much and do not know what we would do without it. It has helped us out so much! It has also helped Katie out because she gets to come home!!!! Praise God!!! This is such a wonderful moment and our family is so excited that it came sooner than later! We know that she will still need therapy and has a while before she is completely back to her old self but it is a big step in the right direction and for that we are thankful. God has truly blessed us and Katie! He has kept Katie strong through this whole situation and provided us with everything we needed.

John 14:27- Peace I leave with you :my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

Joshua 1:9- Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God will be with you wherever you go."

Looking good!

Katie is still doing very well! Her speech has gotten so much better over the last week. Her eye is looking very good and you can hardly tell that she had a black eye, which is good. Katie has been doing good in all of her therapies and she can now tie her shoes will little or no assistance. The staff here at MRC is also working with Katie on becoming more independent and doing things on her own. Katie has gotten used to everyone helping her and doing stuff for her since she was not able to do it herself. So, now they are wanting her to get use to doing those things on her own again, since she has gained the ability back to do that. She sometimes get frustrated with having to do things on her own, but she understands why she needs to do it. For occupational therapy Katie now has checklists that she is doing and they remind her of the things she needs to do for the day. For example, she has to check off that she brushed her teeth and put her dirty laundry where is belongs.

Here in about two weeks Katie will be able to come home and stay for 4 to 5 days. Then, we will take her back up to Barnes hospital to do a 24 hour checkup. While she is there she will do her bio-therapy again as well as, be checked over from head to toe and monitored. They are doing this so that the doctors can determine if she needs to do more in-patient therapy or if she can move on to out-patient therapy. She is excited to get to come home for a few days and we think it will be good for her!

We want to thank everyone for encouraging us and taking time out of their day to read the blog, ask about Katie and visit Katie. Katie has really enjoyed the visitors and all of the cards and mail she has gotten. Thank you for doing all of that for her and for everything that you all have done for our family. Sorry that the blog has not been updated in several days, I have been sick but I am doing much better now.

Also, feel free to come visit Katie! During the week the best time to visit her is anytime after 4 pm. and on the weekends you can come between 9am and 8:30pm. You can visit Katie up until the 17th of January because she will come home on the 18th. You can also call or text Katie as well because she has her cell phone with her!

Romans 8:18- I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

Philippians 3:7-8- But whatever were gains to me I now consider loss for the sake of Christ. 8 What is more I consider everything a loss because of the surpassing worth of knowing Christ Jesus my Lord, for those who sake I have lost all things. I consider them garbage, that I may gain Christ.

Getting better each day!

Katie has been doing very well in the past couple of days. Her eye and head, where she fell, is healing up very well and looks alot better than it did a few days ago. Katie is still doing great with her walking and her speech is getting better each day. Now, she does not have to try and think about what she is wanting to say all of the time, but instead she can just say i. Whereas before it took her a few seconds to say what she wanted to. She is also talking in longer sentences than she was before. She used to only say a couple of words and that was all she could get out. Katie is still eating very well at all of her meals and she snacks throughout the day, so she has definitely gotten her appetite back.

Now, Katie did have a little episode the other day. She had told the nurses that her vision was going blury and she began shaking. The nurses believe she was having a seizure and it only lasted for a couple of minutes. She is fine now and the docotor believes this happended because they had taken her off a certain medicine because it was lowering her blood pressure. However, this medicine helped with the seizures and so they decided to give her the medicine again, but this time they are lowering the amount that she is taking. Since they have changed the amount of medicine she is taking she is doing fine and has not had anymore episodes.

Please keep the young woman at Barnes in your prayers. The doctors still have not figured out what she has, but they are all working very hard to find out what it is. Please pray for her family, that they will be comforted and have strength. The young woman has had a few small improvements here and there so that is a positive note!

Thank you everyone for helping our family out and for all of the continuous thoughts and prayers for my sister. It means so much to us and we are extremely thankful! I also would like to wish all of you a Happy New Year! I hope all of you are able to enjoy the New Year and spend time with your family and friends. Also, I  would like to encourage you to take a few minutes to reflect on the year and remember all the good times throughout the year! HAPPY NEW YEAR!!!

Do not forget that you are more than welcome to come and visit Katie, as well as, call or text her. She has her cell phone on her and if you would like or need her number just get ahold of my mom or I and we will get it to you.

"Today, is the first blank page of a 365 page book. Write a good one."

Things are going good

I hope that everyone had a wonderful Christmas and were able to spend time with family and friends. We were able to spend Christmas with Katie and I think she really enjoyed getting to see the family and spend time with them. She has been progressing very well over the holiday. Her speech is getting better and she is able to say more than a couple of words at a time. She is also able to say what she is thinking a little easier than she was before. Her fall did not slow her down at all because she is back to walking and not using her wheelchair anymore. Katie is allowed to walk everywhere she goes and she told us that in her physical therapy she moved up because she was riding a bike and now she is walking/jogging. Katie is doing extremely well her and everyone is impressed with her progress. She still has a long road ahead of her before she will be completely back to herself but the progress she is making is really good!

If you would like to visit Katie she would love it and I know that on Saturdays they do a luncheon for friends and family of the patient at 11:30 if anyone would like to come and visit with Katie during that time. Also, you can visit her anytime after 4 during the week and from 9 to 8 on Saturdays and Sundays.

I would also like to ask that you would keep the young woman, at Barnes Hospital, who they believe has the same thing as Katie in your prayers. She is not doing good right now and they have her in the ICU and she is in a medical induced coma because they are trying to relax her brain so that she will stop having seizures. Please pray for her, her family and the doctors as they are all trying to help her and get her well again.

Thank you all for EVERYTHING you have done for our family and for keeping us in your thoughts and prayers! It means so much to us and we are very grateful for everything and know that God has blessed us so much!

1 Peter 5:7- Cast all of your anxiety on Him because He cares for you.

Merry Christmas!

Katie is progressing pretty well. On Friday when we came in the doctors had told Katie that she did not have to use her wheelchair to get around anymore. Now she is able to just walk any where she goes. However, last night she woke up and the nurses are assuming that she was headed to the bathroom and she fell. When she fell she hit her head on the ground and now her eyebrow is somewhat swollen and her eye is a little black. She is doing better this evening and has been taking some pain medicine for her head. When Katie does therapy this week they are going to try and let her walk on her own again without the wheelchair. Right they are just being cautious and making sure the reason she fell was because she tripped on her blanket and not because her legs gave out.  Katie's speech is improving each day and she is becoming more clear to understand. Katie is still eating very well and is doing very well in all of her therapy.

If you would like to come and visit Katie you are more than welcome to. Here at the rehabilitation center they encourage family and friends to visit the patients. It is best to come around 4 or later in the evenings during the week. Then on the weekends she does not have any therapy and you can come between the hours of 9 to 8 to visit her. She would really enjoy the company and would like to see everyone.

Thank you for everything you all have done! It means so much to us and we are very thankful to have all of you in our life. Everyone has been amazing through this time! Thank you!

My mom, Katie and I would like to wish everyone a Merry Christmas! We hope that all of you have a wonderful holiday and get to enjoy time with family and friends. Don't forget to tell your family and friends how much you love them and really spend time with them this holiday because you never know when they may not be here any more. Also, do not forget the true meaning of Christmas which is the birth of Jesus!!! Take some time this holiday to concentrate on that and remember the real meaning for Christmas.

For unto you is born this day in the city of David a Savior, which is Christ the Lord.- Luke 2:11

Things are getting better!

Katie is doing very well at Mt. Vernon! She has gotten the routine down and is making some friends. There is one young gentleman there about her age that she has became buddies with. They usually eat their meals at the same table and he is showing her the ropes. The staff there is great as well! They are always making sure Katie is doing alright and that she has everything she needs. Right now they have Katie in speech therapy, occupational therapy and physical therapy. She is doing very well with her physical therapy. She has been walking and is doing a great job with it;however, she has to have someone walking with her just to keep her safe. The doctors are impressed with how well she is walking though. She does have to use a wheel chair though to move around because her legs will give out after so long and they do not want her to fall. So they are doing the therapy to build her strength back up.

Katie's speech has gotten better, but she still has trouble saying words. You can tell that she knows in her mind what she wants to say but cannot get the words out. Usually when she says anything it is one or two words. She does undertsand you when you talk to her though and will try to give you an answer if she can. Last night we brought her some games to play and we played with the cards. We played the card games war and go fish and she did really well with this. She remembered how to play the games and what the rules were. I did have to give her brief instructions on the games but once we got to playing she knew exactly what to do.

Katie has been eating very well and every night we have been with her she has ate pretty much everything on her plate. This is a very good thing! She has also been sleeping quite a bit, but that is normal because she has had very little sleep in the last month. Katie will be in Mt. Vernon for about four more weeks and then she will have to go back to Barnes Hospital to do another treatment of the biotheapy (which is the chemo type of medicine that she has been getting). Also, I did not explain this very well, they do the biothrepy through an IV not s shot. After that they will tell us what they think the next step for Katie will be.

If you would like to come visit Katie at the rehab center just let my mom or I know and we will let Katie know. The best time to visit her would be anytime after 4 pm because that is when all of her therpy is done. Please just let us know when you are coming before you go there so that she does not become overwhelmed.

If you would like to send Katie any mail her address at the Missouri Rehab Center is:
Katie Highfill
Missouri Rehabilitation Center
600 N. Main St.
Mt. Vernon, Mo 65712
Please make sure that you put all of this information on whatever you send her. Also, feel free to send Katie mail to our house because we are at home now and can bring it to her.

Thank you for all of the help and support that you have given our family! We are very appreciative!

Never tell me the sky's the limit when there are footprints on the moon.- Unknown
Your life is your message to the world. Make it inspiring.- Lorrin L. Lee

Mt. Vernon!!!

Katie has been moved to the Missouri Rehab Center in Mt. Vernon! She got moved and settled in yesterday afternoon. She did pretty well settling in there. She was still a little anxious moving from Barnes to Mt. Vernon but that is normal. When I get the address for her I will post it on here so that you can mail her stuff if you would like. Also, if you would like to mail Katie something you are more than welcome to send it to our house and we can take it to Katie. Later this week I will post more informtaion about the rehab center and how Katie is doing!

Thank you for everything you all have done! It means so much to us!

Proverbs 3:5-6
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will direct your paths."

Closer to home

Katie is progressing very well! The doctors have told us that she is now ready to go to a place for rehab. Barnes Hospital has done everything they can for her and now it is time for her to move on to a new place. There is a rehab facility in Mt. Vernon and it is claimed to be one of the best. Right now that is where we are trying to get her in at. We are waiting on a few things before that can happen and Mt. Vernon has to accept her as well. So far things are looking good though! If everything goes through and works out Katie can possibly be moved to Mt. Vernon as early as Sunday and this would be a wonderful blessing because Mt. Vernon is only around 45 minutes away from our house. Please pray that everything will work out and Katie can keep recovering well! She is a very strong person and she is not letting this get in her way!

Thank you for everything that you all have done! It is amazing how many wonderful people God has put in our life and we are thankful for that!

Also, I would like to ask you to keep praying for the other young women at the hospital who they believe has what Katie does. Her and her family are just starting this process and will be needing lots of prayers. In addition, please pray for all of the families, students and faculty in Connecticut that were involved in the school shooting. As a future teacher and someone who has lost several family members, it just breaks my heart to hear of things like this happening in the world. There were several people who lost their lives in this shooting and a majority of them were children. They definitely could use our prayers and support.

Philippians 4:6- Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. (Don't worry about anything, instead pray about everything)

Isaiah 41:10- Do not fear, for I am with you, do not be afraid, for I am your God. I will strengthen you, I will help you, I will uphold you with my victorious hand.

Psalm 23:4- Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

Go Katie!!!

These past few days Katie has really been progressing. Yesterday Katie was able to start eating some soft foods like jello or pudding. They were also able to get her to take a couple of steps. Her physical therapist and occupational therapist are both very happy with the progress that she is making. Then, today she has started feeding herself which is another great step forward. She also walked down the hallway at the hospital and my mom said that she was still wanting to get up and move around so they were going to let her walk later this afternoon. Katie is progressing very well and you can definitely tell that she is someone who does not back down and does not let anything keep her down. She is a very strong-willed girl who will accomplish anything that she sets her mind to and that is being shown now!

Please keep praying for Katie because even though she is making wonderful progress she is still confused about what is going on and does not quite understand why she is in the hospital. That has to be very scary for her as well because she is in an unfamiliar place with people she does not know. Please just pray that she will be comforted and know that she is safe there and that the doctors, my mom and I are doing everything we can to help her get better.

Also, there is another girl at the hospital that they believe has the same thing as Katie. My mom has talked with her parents and has been checking in on her. Please keep her and her family in your prayers too, because they are just starting this long process and I know it will be scary and tiring for them. Also, please pray that we can be encouraging to that family and help them understand this disease better. I know God has a reason for our family and theirs being at the hospital at the same time and we want to help them as much as possible.

Thank you everyone for all of the prayers, support, encouragement and help! We are so thankful for everything you all have done, it means so much to us! We are beyond blessed to have all of you in our life! THANK YOU!!!

Jeremiah 29:11- "For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

Psalm 121:1-2- I lift up my eyes to the mountains- where does my help come from? My help comes from the Lord, the Maker of Heaven and Earth.

1 Peter 5:7- Cast all your anxiety on him because he cares for you.

Deuteronomy 31:6- Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.

High-fives and thumbs-up!!!

Katie is progressing more and more each day. I was with her this weekend and both days she had improved from the previous time that I saw her. On Saturday they took out her port in her neck that they used to get the blood for the pheresis treatments. I believe this made Katie feel better because it was one less thing that was hooked up or attached to her. The place on her neck where the port was is healing very well. Today when I saw her she just had a band-aid over the area and it looked a lot better. They also started giving her medicine to slow down her heart rate and blood pressure so this made Katie really sleepy yesterday. She had her eyes closed for most of the day and during some of that time she was actually sleeping. They did get her moved over into the chair and did not have to keep her strapped in since I was there. She did well with this both yesterday and today.

Today we received some great news!!! Her nurse today came in and said that she was able to get Katie to give her a high-five with both hands and then interlock her fingers with Katie. Then, she was also able to touch Katie's foot and have her raise it up by asking her to raise her leg. She did this with both legs and I was also able to get her to do part of a thumbs-ups. She was able to close her hand together into a fist with her thumb on top but could not lift her thumb up. So I asked her to wiggle her thumb instead of raising it and she was able to do that! The best part about the day though, was she did the high-five and thumbs-up thing for the doctors and they were VERY impressed. All of her doctors were very excited to see this improvement in Katie. In addition, she was more alert today because they stopped giving her the medicine to slow down her heart rate and blood pressure because her blood pressure was getting too low. So, today if I asked her a question she would sometimes answer by shaking her head yes or no. For example, I asked her if she wanted to watch the football game on tv and she shook her head yes. Then, I asked her to wave at some friends of ours that came to visit and she did that as well.

Now, we are in the process of getting Katie into a rehab facility, so that she can begin relearning the how to do everyday things, such as walking, using her hands etc... Katie is progressing very well and we were very excited to see and hear this news today. It was a wonderful blessing and God has really shown us that you shouldn't take anyone or even the simple things in life for granted because you never know when they may not be there or you will not have the ability to do something.

Thank you to everyone who has been praying, supporting, thinking and helping us out through this time. It means a great deal to us and we feel so blessed to live in such a great community and know so many wonderful people. Thank you for all the prayers for Katie, God definitely has his hand over her.

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 It always protects, always trust, always hopes, always perseveres.- 1 Corinthians 13: 4-7 (Let God's love strengthen and guide you)- Someone on my hall wrote this verse and sentence on a sticky note and put it on my door here at school. I thought it was very encouraging and it made me think of everyone who has been supporting Katie through this tough time and how everyone has shown LOVE! Thank you!

Some good stuff

Katie has been progressing slowly this week but it has been getting better each day. On Tuesday and Wednesday the nurses/doctors allowed Katie to sit up in the recliner, which she was not able or allowed to do before. They still had to keep her strapped into the chair though and that was just for safety precautions  It's not as bad as it sounds and they only do it because she is still considered a flight risk and do not want her trying to run away. Today they were able to get Katie to stand for a little while, it was not a very long time but it is still progress. This is definitely a positive thing because Katie has not stood or been out of a bed in almost three weeks.

Katie has also had a shot of a medicine that is used to treat some chemo patients, I think I forgot to mention this the other day. She does not have cancer and this medicine will not make her loose her hair or have the side affects of normal chemo medicines. This is a very low grade chemo medicine and the purpose of it is to kill or slow down the cells that are producing the bad anti-bodies that have been attacking her brain. The only down side to this medicine is that it can knock her immune system down but that is about the extent of it. Katie had this shot a little over a week ago and they are planning to do another one next week I believe. I am not sure if they will have to give her any more of these shots after that, but I think it mainly depends on how her body reacts and the progress that she makes.

Right now, it is a waiting game since they have done all of the pheresis treatments and have given Katie the chemo medicine shot. We are just waiting to see how Katie's body reacts and how long it takes for her body  and mind to come back to normal.

Thank you for all of the prayers, encouragement, support, cards and help you have given our family. It has been so helpful and has definitely played a big role in us getting through this time of our life. We are very thankful for everything and appreciate all you have done. Also, thank you for all of the cards that you have sent to Katie, my mom has decorated her room with them!

"Tough times never last, but tough people do."- Robert H. Schuller

Over the weekend

Katie was about the same over the weekend. While I was there she was trying to talk and at times she would say a word here or there. My mom also said that she had said a few words throughout the week. However, Katie did get very frustrated when she was trying to talk because she couldn't get the words she wanted out. She also did this thing where she was moving her lips and looked like she was talking but no words ever came out. She is still very alert though and will follow us around the room, as well as look at us when we talk to her. A couple of things she did over the weekend that we found to be funny were she rolled her eyes at me when I was talking to her and asked her to quit sucking on her lip. She also had this grin on her face that looked like she knew something that we did not know. So Katie is coming back to herself and we are able to see bits and pieces of that here and there, it is just a slow process. The doctors told us that with Katie's condition the last thing that she lost the ability to do will be the first thing that she will be able to do now that we have done the Pheresis treatments. So it's like we are reversing the condition. Then in about another ten days they are going to give her another dose of medicine that will slow down or kill the cells that are producing the bad anti-bodies. She has already had one dose of this and they are not able to give another dose until two weeks after the first dose.

I also wanted to mention that in the video that I posted earlier in the week the lady had to do chemo and had a tumor. Right now Katie does not have a tumor and they have checked several times for one. With this condition some people will have a tumor and that is what causes the Anti-NMDA receptor encephalitis in them and other people will not have a tumor at all. Also, Katie does not have cancer even though some people with this disease can have cancer, she does not. So we just did not want anyone to worry about Katie having certain things when she did not. However, several of the other symptoms the lady had are similar or the same as Katie's.

Thank you everyone for all that you have done and for all of the prayers! It means a lot to all of us!

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." - John 16:33

Peace I leave with you; my peace I give you. I do not give you as the world gives. Do not let your hearts be troubled and do not be afraid. - John 14:27

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. - Isaiah 41:10

A little something...

This week Katie was able to move back up to the 11th floor, which is where she was to begin with. The reason they brought her down to the 10th floor which was the Progressive Care Unit was because they wanted to keep a closer eye on her because of her temperature and blood pressure. Therefore, it is a positive thing that Katie was brought back up to the 11th floor. They also did another round of Pheresis this week along with giving her a steroid after the Pheresis. They gave the steroid the last three times as well. Right now the doctors are just saying that it is going to take time for Katie to get well again and that it is not something that will happen over night.
The staff at Barnes has also been working on getting her a mouth piece that is fitted to her mouth. She has went through two other ones already and tore those up. The reason they want/ we want her to have a mouthpiece is because she is sucking on her lip and making it swell, biting her tongue and grinding her teeth. All of these are symptoms of her condition so it is normal for her to do stuff like this and she does not have any control over it. However, we do not want her to tear up her mouth or damage it so that is why she needs the mouthpiece. The two that she had before were not very comfortable and it rubbed against her lips. So one of the nurses who used to work in an orthodontist had a wonderful idea of the type of mouthpiece Katie needed and so now the staff their is working towards getting Katie that type of mouthpiece, which is a wonderful blessing.
Another thing that Katie has been doing this past week that she was not before is she is sitting up. When I talked to my mom she said that Katie would sit up for a little while and then lay back down, then sit up again and lay back. This is another positive sign.

Also, since Katie has been moved to a different floor and is in a different room so her room number has change. When sending Katie mail please put the room number 11469 instead of the other room number that I had on here before. If you have already sent her mail at that room number it will be fine and they will get it to the correct place. 

Here is a YouTube video that I found about a lady who had Anti-NMDA receptor encephalitis and it explains and shows some of the things that Katie is and has went through. Now the lady in the video had a tumor on her ovary which is usually found in the women who have this condition; however, Katie does not have a tumor and that can also happen. I would also like to remind you that not all of the symptoms that this lady had are the same as Katie's. Katie does have some of these symptoms but not all of them. In this video there is a second part to it and I never watched it so I am not sure what it contains, but it was about a gentleman with a mystery diagnosis. In addition, if you have young children you may want to watch it before you let them watch it. There is nothing bad in it but it can be kind of scary to a young child. There are some websites I am also going to link on here if you would like to check them out. They will have some information about the condition.
http://www.youtube.com/watch?v=x-GBg7O_M0k
http://www.susannahcahalan.com/the-book/description/
http://www.scientificamerican.com/article.cfm?id=brain-on-fire-my-month-of

Thank you again for all of your prayers and everything all of you are doing! My mom and I truly appreciate it and we could not get through this without that. We just have to keep trusting in the Lord and know in our hearts that He is in control of everything!

No matter how your heart is grieving, if you keep on believing the dream that you wish will come true.- Cinderella

Some background information

I know many of you are probably wondering what happened before Katie was brought up to Barnes and diagnosed with Anti-NMDA receptor encephalitis. So I wanted to give you some background info about how Katie acted and her symptoms so that it may make more sense.

My mom and I had seen Katie the weekend of the 13th of October at Silver Dollar City. She was there with a group from school and we had season passes so we decided to all meet up and hang out for the day. She seemed completely fine that day and acted just like normal. We talked about school, family, friends, rode rides and all that stuff. The only thing odd about Katie was that she was a little pale and I did not even notice that but our mom did. We just thought it was because she had been really busy with school, softball and getting used to college and she did not mention anything about not feeling well. So we went about the rest of our week like normal and things seemed to be fine. Katie and my mom had talked on the phone several times and everything seemed normal. The only thing that was wrong was Katie had told our mom that she had a dream about Jesse, our brother, but mom and her had talked about it and everything seemed to be okay. Then, the week of October 22nd she began doing odd things here and there. Sometimes Katie would say stuff that did not make sense and she became very outgoing at times. For example Katie was dancing in front of several people and we have a ridiculously hard time getting her to play Just Dance on the Wii. She also became very emotional at times and cried often which is not like Katie. By the end of the week she became more lifeless, incoherent and saying very odd things. We took her to the hospital in Jonesboro when we arrived in Arkansas and picked her up from the school. While she was in the ER the doctors ran tons of test on her and they checked her for everything you could imagine but she seemed to be just fine. Once the doctors found out about our family loss about two years ago and all of Katie's test being negative they concluded that this was a mental or psychosis problem and that is why she was brought to the Behavioral Center in Joneboro.

While Katie was at the Behavioral Center they were not able to give her a diagnosis. Katie became worse throughout the two weeks and they even brought her back to the medical hospital to do more test and still everything showed up negative. Now this is usually what happens to people who have Anti-NMDA receptor encephalitis they get mis-diagnosed at first because they do have all the symptoms for a psychosis disorder. Also, Katie fit the criteria because of the big loss in our family and being a freshman in college because that can cause a lot of stress. That is why it made such perfect sense, however Katie was still not getting better and this worried many people because if it was a mental issue she would have came out of it by then. Towards the end of the second week of Katie being there she started running a fever and that is when she had to be brought back to the medical hospital. They found out that she had strep and they were also checking for meningitis, but those results came back negative. So at that point we did not know what to do because we could not figure out what was wrong with her and things were getting worse. That is when my mom asked the doctors if we could have her transferred up to Barnes. The doctors contacted the doctors up there and by the grace of God Katie was accepted and we were able to get her up there. That is exactly what we needed and as I said before the doctors in Jonesboro did everything they could but Katie needed to be in a hospital that is use to having weird and abnormal cases like hers.

I hope this helps you understand Katie's situation a little better and all of the abnormal stuff that Katie did the two weeks before being admitted to Barnes were all symptoms of her condition and that is how people can act who are affected by this. Also, we were reminded that God knows best and that we need to trust in his timing. While Katie was in Jonesboro we tried to move her to a hospital closer to home but they either would not accept her or did not have a bed. This was very frustrating for us, but now we have her at Barnes which is closer to our home than Jonesboro was and plus we have family that lives close to the Barnes hospital and that is a very comforting thing. God's timing was perfect and he allowed Katie to be in a hospital where we could have close access to family and friends which is a great support and comfort. Now, Katie had other signs and symptoms of the Anti-NMDA receptor encephalitis that I did not mention but I gave you the gist of everything. Thanks for everything you all are doing and for all the prayers it means so much to us!

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.- Romans 8:28

A Thanksgiving Blessing

A few days ago the doctor came in and said that he had received the results back from the Mayo Clinic. The results came back positive and that means Katie has anti-NMDA receptor encephalitis. This is what the doctors thought Katie had and had started treating her for. So we were headed in the right direction and just needed that confirmation which we have now. So they doctors did another pheresis treatment today and will do one on Tuesday as well. Katie has been doing a little better since she has had the pheresis treatments. This past weekend she said the words, I know, yeah and we think she also said "go home". This is all a good thing because before Katie either did not talk at all or you could not understand anything she was saying. Katie is also a little more alert to what is going on around her and to the people that are around. However, she is very confused and does not understand what is really going on. Most people who have this diagnosis do not remember everything that happens and that is probably what is happening with Katie right now. So she does not understand why she is at the hospital or how she got there. Today though she wanted to sit up and she has not tried doing that yet, so that was another improvement.

I know this diagnosis has a big name and sounds confusing, which it is but there is a book out called Brain on Fire, my Month of Madness by Susannah Cahalan who also had this. I have ordered the book but have not got to read it yet. I think it will help anyone understand what is happening to Katie better. I know that the book is cheaper to buy online than the store and there is also a website that has the book on it to read for free. I will post that site within the next few days I'm not exactly sure what it is called yet.

Anti-NMDA receptor encephalitis is an uncommon disorder and the doctor said that only around 200 people in the U.S. have been diagnosed with it. Also, it has only been given a name about five years ago so it is still very new. In addition, it will take Katie a while to recover. The doctor said she would be at Barnes for a few more weeks or even months. Later on down the road she will have to do rehab in order to learn how to do certain everyday things again. Now this disorder is nothing to get worried about, people recover and will be back to themselves once everything is all done. It just takes time which is okay with us. I will find some good links that explain what Anti-NMDA receptor encephalitis is and post them within the next few days so that everyone can gather more information about what is happening to Katie. Also if you look this disorder up online it will bring up many different sites with information.

Thank you everyone for all of the thoughts, prayers and encouragement it means the world to us and it helps us get through everything so much more easier. And thank you for all the prayers and support you are showing my sister, she is a tough person and that has really shown through all of this. Have a wonderful week!

"Be joyful always, pray continually, give thanks in all circumstances, for this is God's will for you in Christ Jesus."- 1 Thessalonians 5:16-18

Katie's Address

If anyone would like to send Katie something (a letter, card etc...) the address is:

Katie Highfill  rm 10580
One Barnes Jewish Hospital Plaza
St. Louis, Mo 63110

The latest...

Katie has been about the same for the last few days. She has been running a fever and her heart rate has been kind of high lately; however, that is most likely a symptom of what she has. They still went ahead and moved her down a floor so that they can keep a better eye on her. She is in the PCU (progressive care unit) for neurology and neuroscience, which is for the patients who do not need to be in the ICU, but still need to be looked at and monitored more often. She has also been having episodes that look like seizures, but they are not which is a good thing. The doctors there have her protected though to where she cannot hurt herself while these episodes are happening and they have a camera on her 24/7, so Katie is always being watched.

Right now they are thinking that Katie has a disorder called Anti-NMDA receptor antibody and I know I didn't mention it earlier but I thought I would. They have not received the results back from the Mayo Clinic to confirm it yet, but still wanted to start on the treatment. So we are still not a 100% sure that this is what she has. The Anti-NMDA receptor antibody is mainly a disorder where the anti-bodies in her body are acting inappropriately and attacking her brain. This disorder is very new and has only been around and had a name for about five years. If you look up the disorder online it may be helpful to understand because it is confusing. As of now the treatment they are doing is called pheresis which is where they take out some of her blood at a time and spin it. When they spin the blood it separates the blood from the plasma and they get rid of the plasma because they believe that is where the bad anti-bodies are. This procedure will have to be done several times and  it will take a while before we will see any difference in Katie.

On a different note, I hope that everyone has a great Thanksgiving!!! Also, do not forget to tell your family and friends how much you love and care for them because you never know when they may not be there anymore. Have a wonderful holiday and thank you again for all the support and prayers!

Everything happens for a reason!

A Positive Note

Today I saw Katie and she is in about the same state as she has been for the past few days. She has been unresponsive and sometimes she will look around, but if we talk to her she does not say anything back to us. She also does not talk any other time either, but this is also one of the symptoms. They have also got a feeding tube in her and she has been able to keep the food down the past couple of days and that is a good thing.

The doctors think they know what Katie has, but we are still waiting on the results to come back before they confirm it. If it is what they think she has it is a physical sickness and not a mental sickness, like we first thought. Katie has a great majority of the symptoms and it would explain a lot of her actions throughout the past few weeks. Also, if the results do confirm that Katie has what the doctors think it is then they have a way to fix it. However, that process could take quite a while, but Barnes Hospital has done this procedure before. I would give everyone the name of what they suspect Katie to have but I am going to wait until it is confirmed, just so we don't jump the gun or anything.

We also wanted to thank everyone for all their support and prayers, it means so much to us! Thank you very much!

I learned there are troubles of more than one kind. Some come from ahead, others come from behind. But I've bought a big bat. I'm all ready, you see. Now my troubles are going to have trouble with me.- Dr. Seuss

What is going on???

Hello,

I know many of you are wondering about what is going on with Katie. I am her sister, Kara, and I wanted to create this blog, so that we could inform the community about what is going on, as well as, pray, encourage and support Katie throughout this situation.

One thing that I ask though is please do not put any mean, rude or negative comments on here. That is not what this blog is meant for and if there are any of those types of comments on here I will delete this blog and I would hate to have to do that. So if you cannot say anything nice, please do not say anything at all. Thanks!

Katie is at Barnes-Jewish Hospital and she was brought up there this past weekend. She is in very good hands there and she has several doctors trying to figure out what is wrong. They are all very nice and working as hard as they can to figure out what is going. Katie has also had several medical test done and all of those have came back negative, which is a good thing. Katie was at St. Bernards before she was moved to Barnes and they did everything that they could for her there. As one doctor pointed out and I agree with him, he said "St. Bernards medical hospital is meant to treat your everyday brown horse and Barnes-Jewish is meant to treat zebras and right now Katie is a zebra". Therefore, Katie is in the right place, and now it is just a matter of being patient, waiting and knowing that God has the situation under control. As of now all we can do is pray, support and encourage Katie.

I will update this blog every 2 to 3 days, if not sooner than that. I know that many of you will have questions after reading this and most of them we probably cannot answer, but if you would like to ask any questions you may send me a message through Facebook. I will try to answer it the best I can for you. Also, my family and I want to thank everyone for all the support, thoughts and prayers!!! They have definitely helped us get through this difficult time and they will continue to help us get through the rest of this.

James 1:2-3
Consider it a great joy, my brother and sisters, whenever you experience various trials, knowing that the testing of your faith produces endurance.