Joran was making such incredible progress on a daily basis that her gains were often shared via Facebook quicker than we could update the website.  As we grieve for our beloved daughter, sister and friend, we wanted to share some of Joran's most recent progress here.  

July 5, 2015 Facebook Update...
Today was a great day! Joran was able to get into a regular car! I did not think she could do it due to the tone from her brain injury makes her push her Head backwards. But between pool therapy, her stander and walker making her stronger plus reminding her "nose to the toes" when sitting her down she has made great improvement. Now we just have to get her a folding wheelchair that is more appropriate for her current needs and condition... We got turned down once already but prayerfully this time we will get it approved we are going to Pinecrest rehab for a new Evail ..... — at Winston Trails.

July 4, 2015

Joran celebrated Independence Day surrounded by family and friends.

Joran was always smiling for her mom!!!



June 4, 2015
Joran and her mom attended the DoriSavesLives.org event, thanking and supporting first responders, delivering a powerful testimony, and encouraging others who have lost loved ones too soon.

May 28, 2015 Facebook status update...
We are selling Joran's handicap van if anyone knows someone in need, we are going to buy a valet seat for a car with what we get for the van since Joran Frogner can do stand pivot transfers now.

Joran and her family have worked very hard to get this far.  Joran's mom, Katheryn, sends out these updates whenever she can to keep us updated on Joran's progress.  Many of us help out by doing errands, shopping, cooking, or anything we can to alleviate the strain on the family.  There have been trips to the Emergency Room for seizures and pulled out feeding tubes, and there have also been major blessings.  Every little bit of progress is a miracle, such as Joran learning to communicate, and making progress with therapy.  But most of all, there is incredible faith, hope, and perseverance on a daily basis.  Newest entries appear at the top.  As you read, please continue to keep Joran and her family in your thoughts and prayers. Thanks and God bless!

September 29, 2013

Joran’s feeding tube is out!

Joran hadn't been using her feeding tube for a while as she has been eating by mouth for two years and started drinking thickened liquids by mouth. So after have so many problems with going back and forth to the hospital and get resized for a new tube because she gained weight, then having a lot of leaking from the tube because she lost weight, and having several malfunctioning tubes, I felt she was ready to get it out. Plus because it was leaking stomach contents on her skin around the tube it was painful and bleeding, and the skin was breaking down. All it took was me being gone one day and one bad aide that didn’t change the dressing around the tube, and I could not get her skin to heal. So I hoped that by getting it out it could then begin to heal.

Joran’s feeding tube came out on September 19th and though it is a great step forward I was not prepared for all the trips to wound care Doctors the ER and all of them just making her skin redder and more painful. And I was told it would close up in a few days now I find out it can take months and still require surgery to close it if it doesn’t on its own.

I also didn’t think about now there was nothing keeping in her food and water from leaking out! So I have been feeding or giving her water after 30 minutes laying her down to keep it from coming out. Fortunately she does not want to eat as much because of the pain. Anyway it has been a full time job trying figure this all out, which if I had known I would like to have been able to put it off until after the holidays or at least until the design job I am working on was completed.  So if you haven’t seen or heard from me lately, you know why!

In spite of the Doctors who have made her worse I have come up with my own system and combination of treatments that are helping her skin at least. I figured out that I need to feed her only non- acidic foods and no sugary fruits or juices. I also found a mother’s site about tube feeding children and about tube removal problems that have been helpful. I also have an appointment with a surgeon in a couple of weeks to see how long he thinks it should take to close up the hole and if it requires surgery to close it up which is more likely if they have had the feeding tube in a long time.

Until it does Joran is not doing any therapy and can’t go to the pool, except for therapy I do at home. Joran did finally get her speaking device it took two years but in Gods perfect timing as she is able to use her left hand now to use it. They need to set up texting so she can text or call Brad on it and she should be able to pick her music and TV programs also eventually. I am hoping it will give her back some control and cut down on her screaming.
Please say a prayer for quick healing for Joran and she can get back to getting the therapy she needs.

Blessings to all!   Love, Katheryn

*
*
*
*

June 8, 2013

Joran has been making steady progress in therapy.  She is rolling from one side to the other in bed and learning to roll on her side, swing her legs off the bed and sit up. She is also leaning forward and standing from the bed to get into her chair on her own, it usually takes her a couple of tries but she gets it.  I am also trying to wean her off the feeding tube. I still make her fruit and veggie smoothies but have been giving the fruit one by mouth and one or two of her waters each day with a little thick it added to make it a nectar consistency and have been spoon feeding it to her. It takes a long time for her to drink it all so I only have time for two-three per day right now. She is eating everything by mouth now, even salad, so the only reason for the tube still is for water, meds and supplements that she won’t take by mouth.  I am experimenting with different smoothies that have her supplements in them that taste good and I try to be clever and hide veggies in her food but if she can she will spit it out.  Joran always only liked junk food and the most fattening food, so it has been a challenge.

I am also working on getting Joran to blow bubbles through a straw and to suck liquids through a straw but I was only able to get her to do it twice so it is not working out well yet.   I would need her to be able to do that or drink all her liquids from a cup before I would take out her feeding tube.

 I wish I could report she has stopped screaming but we are on our second behavior therapist and hope he can come up with answers to help us stop some of it. She says she doesn’t want the aides, that she wants me to take care of her.  We are still waiting on the speaking device, which may help some of her frustrations.  We went to Nova University for her assessment. She is getting speech therapy again as she is now trying to speak more, and hopefully if she can communicate better that will ease some of her frustrations.  The problem with her speaking is that she is trying to talk but it is not coming out clear and only I and Brad understand her and sometimes I don’t either which is frustrating.  And they tell me it is because it is so long since her accident, and she unable to move her tongue and lips to form the words correctly. I am excited because the speech therapist will work both on customizing her speaking device and a new therapist they hired, works with exercises that with help with her speech.

I also had Joran assessed by a Neuropsychologist. She did very well in testing which has shown she is a smart girl. I will tell more on this once he writes up her report.

We are doing trials in PT for a shorter wider wheel chair, wider because Joran has gained weight since she got her first one three years ago and she has improved and does not need the tilt in space and head rest that she did in the beginning, and she needs one she can move herself around in. Only problem I can see is since she does not like PT, I will try to push her in and she tries to walk herself right back out now, which she thinks is very funny, if she does not have her foot rests on. And she says “I hate therapy!” So we could lock the new chair to keep her from moving but it may be unsafe as she could push herself over (she is so strong!) and fall backwards, unless they can add weight to the back of the chair.

I cut Joran’s hair short again and it looks cute. It was too hard to brush and it was getting caught in her chair and the aides would not comb it because she would scream. It took Brad to convince her he would like it better short and she would look beautiful to him because she wanted it long for him. I will try to post a recent picture.

I started working again on a design job and Brad has been watching Joran and taking her to therapy when I work.  I wasn’t sure if it would add more stress to our lives or relieve the stress, but I am enjoying it. 

Here is a quote from Ralph Waldo Emerson, “Self-sacrifice is the real miracle out of which all reported miracles grow”. This is a quote that has a lot of meaning to me for many reasons; I would like to hear my friends and families thoughts on what it means to them.  Please use the comments page or send me an email.  Thank you!

Blessings to all!   Love, Katheryn

*
*
*
*

 

August 28, 2012

 

Joran’s surgery to release the tendons on both elbows and hands was successful! The surgeon said to only expect about 30% on her elbows but he was able to open all the way! She has casts on both arms up to her shoulders. (I will post a picture as soon as I can) When they come off you won’t be able to tell right off that she has had a brain injury / stroke as they are straight. Surgery was Friday and took 4 hours and we came home Saturday afternoon.  It takes two of us to change her and turn her so it does not hurt her. We have been busy managing her pain, putting ice on her arms and propping her arms above her head to stop the swelling. I am back to sleeping on the sofa at night next to her bed and Lindsay has again been a big help as I don’t have anyone else in the middle of the night to help change her. But she should get better each day.

 

Since it take two of us to move her and care for her until the casts come off in hopefully 4 weeks, if anyone is able to give rides to Lindsay, pick up dinner or groceries etc…. please let us know. Thank you again to Tara for your nursing expertise and your calming presence, you are a blessing and we love you!

 

Funny note about Joran, as much pain as she is in and on morphine and heavy as the casts are she still is trying to poke the aides.  And when one the nurses in the hospital said that Joran was chubby she shook her head no, and when the nurse said yes she was that she was heavy to move, Joran swung her leg over for a left kick to her head!  Luckily the nurse got out of the way quickly, and said, “I guess she doesn’t like me!”

 

Thank you everyone for all your prayers and best wishes!  Love, Katheryn

*
*
*
*
Aug 8, 2012

Joran is settling into Physical therapy at Pinecrest Rehab Hospital at Delray Medical Center, she is getting adjusted to the new therapists and has made her preferences known. She likes one team and works well with them, but when a different therapist tries to work with her she will not cooperate with her and told her it was because she did not like her. So the therapist said she would have the other team she works well with do all her therapy. She walked 45 steps in the walker last week the most she has ever done with them. She did a stand pivot transfer on her own with the therapist just holding onto her transfer belt. She can also stand for me with me only holding her on one arm for support.

Joran is standing in her prone stander at home and her Get U Up Stander and her posture is getting straighter. We try to get her to stay in the stander for 30 minutes by bribing her with ice cream, sometimes it is just too much for her and she screams and tries to sit down by pushing against the strap around her hips.

We have also been settling in with the new agency, case management and CNAs. It has been a big adjustment for all, especially for Joran. Training the aides on Joran’s care takes a long time before they and I are comfortable enough for me to leave her alone with them.

I am still trying to find a behavioral therapist to work with us on her behavior. Joran has no problem screaming and kicking someone if she does not like them or she wants only her Mom to feed her or take care of her, which makes it stressful for everyone.

Joran’s tendon release on her wrists and elbows is scheduled for the end of August. We are hoping and praying that it will make a big improvement in what she is able to do for herself and will help with her posture in standing and walking. The same surgeon is doing the surgery as on her legs and it has made a big difference.

Please pray for a successful surgery and outcome for Joran.

Joran’s 23^rd Birthday is coming up on September 6, but won’t be planning a pool party for her until the end of the month so that her casts will be off her arms and she will be able to enjoy the pool with her friends. I can’t wait for everyone to see the difference in Joran from her last Birthday!

Thank you to all who are a big support and help to us and to all who have been praying for Joran and our family, we love you!  Love, Katheryn

*
*
*
*
June 2, 2012

I am sorry I have not had a moment to write and update on Joran this past month because so much has been going on! First I was so sick and at the same time lost my night aide, changed agencies and let go my daytime aide. I had to train new aides, so until they get used to Joran and she to them I have to do it all. I am also switching rehab centers as the gas and time driving to Sunrise is too much.  Next week Joran will have assessments at Pine Crest Rehab in Delray Beach.

I wanted to thank everyone for coming to the Hope for Joran Bowl a Thon in support of Joran. I would like to especially thank Pastor Parker and Michele Conreur for all their hard work putting it all together. Thank you to the sponsors: Prime Catch Restaurant in Boynton, A Mother’s Friend Co. Denise Caruso’s company, Michele Elise.com computer and music tutoring by Michele Conreur, Goes Incentives & Awards, Kathryn Willets company, Hessler Paint and Decorating in Boynton Beach and Delray Beach, Dawn Loscalzo with Silpada Jewelry and all the members of Faith United Methodist Church who came and showed their support. Joran loved hanging out with Brad and her friends and watching them bowl like old times and we enjoyed a much needed day out with family and friends.

Joran is making steady progress, I notice small changes every week and I wonder when did that happen?  Such as: she is holding her head up better and doesn’t need her head rest all the time and I took off the side pieces off the head rest that hold her head straight because she doesn’t need them, her head is straight. She is standing straighter, and this week walked the farthest around the gym in the Lite Gate Trainer.

Please say a prayer for the new aides and therapists, Joran has no problem telling someone or the aide that she hates them, or she screams, and kicks them when they pass by her and laughs. Part of the problem is her brain injury and part of it is she just did not like these aides and has no other way to let us know.   I have had to get rid of a few because they were not nice to her or did not understand her brain injury.   I found out after I called the agency to have them replaced that my family and a few others felt the same way about them.  The only people she really wants to take care of her is Brad, Lindsay and Mom, but I told her I can’t do it by myself, I need their help.

The three new ones I have are kind and understanding and have worked with difficult cases like Joran before. It takes a special person to be able to work with a brain injury patient and I hope and pray that I have found them now. The house will be quieter with less screaming from Joran if she likes them, and a lot easier on all our nerves! 
Love, Katheryn

*
*
*
*

May 3, 2012

 
The Brain Injury association says that Stem Cell research is the most promising for brain injury recovery. The stem cell therapy that I am looking into is not stem cells from embryos. It is cultivated from different ways; core blood or by simulating the body to produce its own stem cells.  Because of my Christian faith and belief that all life is precious, even the smallest of life, I am against the use of embryonic stem cells.

Joran was released from speech last Friday and OT in 2 weeks because they have to show improvement and meet goals for insurance to keep paying. OT has only been able to work on her core strength because her wrist and elbows are so contracted. She will continue to go for PT but she really has to do her best in the coming weeks to continue. Thankfully yesterday she had the best day ever! She walked with assistance the length of the gym with no screaming, she was even laughing a hearty laugh with her therapist. She then went on to ride the bicycle without pushing it over (which she used to do in the beginning)!

She needs the tendon releases on her hands and elbows and we are looking at some time in August for the surgery. Then she will be able to go back to having OT. I have mixed feelings about it even though I know it needs to be done so she can use her hands. When she had the releases on her leg, she had many post op problems, one of them was she lost her speech and it took months to come back and it has not improved as I had hoped.

This time I hope to be better prepared after surgery and hope to be able to have a nurse stay overnight to help control the pain meds and Brad said he would stay over a few nights also so hopefully I will be able to get some sleep this time and I won’t need to call my neighbors who are nurses because of every post problem she has.

We are looking forward to Sunday and the Hope for Joran Bowl a Thon. We don’t get Joran out for fun yet because it is so much work and because of her screaming, but her behavior is getting better so we are looking forward to a fun afternoon with our church family and friends and I am sure Joran will love to see Brad and her friends bowling for her. If you are bowling check in is 1pm, hope to see you there!   Love, Katheryn

*
*
*
*

April 20th, 2012
 
Joran walked ½ way around the gym in a walker! Last week she walked in a Lite Gait trainer, not a Gate trainer. And we went back in the pool at the YMCA last week and she walked in the pool with just holding Brad's hands! Joran’s OT said she will definitely need tendon releases on her hands and elbows. She is moving her arms and hands more now but is restricted by how contracted they are but is trying to punch grab hold of us and her feeding tube etc.. In fact she so proudly pulled it out sometime Friday during the night as I found it in her bed in the AM and she was smiling when I told her what she did, until I checked the balloon which had a hole in it and put it back in and taped it up to keep the hole to her stomach open until I could run over to Bethesda Hospital to get a new feeding tube and put it back in. When she does get the tendon releases I hope she is past this agitated state where she wants to hit and kick anyone who hurts her (therapists or CNAS) or God help us!
 
We were unable to do the hyperbaric therapy because the chamber was on the second floor and there was no elevator and no way to get Joran up the stairs. I thought all buildings had to be handicapped accessible! Things work out for a reason though, as I believe God was leading me away from the hyperbaric toward Stem Cell therapy as that seems to be her best chance at making a difference in her recovery but it is about $50,000.00 more than hyperbaric.
 
Joran’s Bowl a Thon Fundraiser is just 2 weeks away! Our goal is to raise enough money for Stem Cell therapy. A place in Boynton Beach costs $55,000.00 but I was told about a place in Mexico that cost $13,000.00, please pray for a good turn out and that sponsors will come forward to make this a reality. We also only have one more week to find a t-shirt sponsor if you know of a company who would like to sponsor the t-shirts call Michele at 880-5077 or Kathryn Willet at 736-5120 by the 4/26/12 deadline.
 
Some people have sponsored teams but are unable to come so they are donating tickets for kids who would like to come but can’t afford it. If you are unable to make it but would like to help get sponsors or raffle items you can call to get posters. Tickets will be sold at church on Sunday. And if you posted on Facebook that you are going you need to contact Michele to buy your tickets or come to church on Sunday at Faith United Methodist Church to buy them after the service.
 
The last fundraiser we were able to raise enough for a handicap van with lift because Dawn Loscalzo found one for only $5000.00 and they are usually $16,000.00 just to put a lift my van so we had enough left over a ramp to the house and to pay for much needed CNA help for me to be able to get out to my doctor appointments etc….. until we got the med waver. The van has really made a big difference in Joran being able to get to therapy and Dr. visits outside of Palm Beach county.
 
During this trial since Joran’s accident while waiting for healing for Joran it has refined my faith, given me strength and patience I didn’t have ... what can only be obtained through God. It has changed me on the inside and humbled me to accept help from others knowing it is not God's will for us to go through our trials alone. It has also helped me to see that God wants us to have joy in our lives in spite of our trials and extreme hardships.
 
Thank you to all of you who have helped our family you have made a difference in our lives and brought joy to us in a very difficult time.  Love, Katheryn

*
*
*
*

March 24, 2012
 
Answered Prayer
 
This has been an eventful week, Sunday marked the 2nd year anniversary since Joran's accident and it was also Terry’s Dads Funeral as Wednesday he went home to be with our Lord, he was a faithful man and he was ready to meet his maker and see Ethel and the rest of his loved ones who greeted him at the gates of heaven. What glorious things he must be seeing now.
 
We finally got a Prone Stander for Joran and a Get U Up Stand up stander! Each one has a different purpose. The Get U Up Stander Joran’s Dad got from his Church fund raising money, and it assists me in getting her to and from bed, wheelchair and potty and saves my back from lifting her and when I am alone I can’t do it by myself without it. The Prone stander the insurance company finally approved after 7 months of my trying and appealing, it will help build up her strength in her legs and upper body to make her stronger for walking they are answers to prayers and I am thankful to have them.
 
Joran’s legs are getting stronger and today she walked in therapy ½ way around the gym in a Gate Trainer walker! Her upper body is still very contracted and is hard for her to hold her head straight, and she sticks her butt out when she walks, but it is progress and even the people sitting in the waiting room with me have remarked that they have seen so much improvement in her in the last few weeks. I hope to get a video of her walking up on her website in the next couple of weeks.
 
You may hear a lot of screaming because that is what she has been doing a lot of lately. But when she gets mad and screams she moves her body and arms more than if she was not mad, which is good but it can be unnerving and I never know when it will start. We will be addressing this issue in therapy next week to see if we can all get the same page on how best to stop it.
 
I am working on becoming Joran’s Medicaid case manager with the CDC+ program (consumer driven care) which means I will hire, train and pay Joran’s CNA’s Instead of an agency, which I have been doing already except the agency has been paying them. Brad, Joran’s boyfriend is taking the CNA class and will work some of the nights and weekends which is hard to get workers for. If you know anyone good who is looking for work please let me know.
 
Lindsay also started home schooling through the Florida Virtual School and before you think I have lost my mind, we told her she could not do it unless it did not cause me more stress and work and she did not keep her grades up. She is very self-motivated and does not require a lot of direction, so it is perfect for her. She has also been a great help to me the last 2 years with Joran and I love having her at home. She never complains to me when I ask for help with Joran in changing her or feeding her and it is wonderful to see the way she interacts with Joran she is really an amazing young lady and I am very proud of her.  Love, Katheryn
 
 
*
*
*
*

February 24, 2012
 
Joran has been doing well in therapy, we go to Healthsouth three times a week and she goes to the YMCA one day which leaves one day for doctor appointments. We also will be starting hyperbaric oxygen therapy soon; I was able to buy 10 treatments for less than the price of one on Groupons. If we see good results I hope to be able to do more.
 
Joran is getting stronger every day. She is doing leg presses, the bicycle and the stander. Her legs are getting stronger and she is able to stand longer when I stand her up to do transfers from the bed to chair and for changing her.
 
She also has started moving her upper arms more, her arms and hands are still very contracted so she is limited in her movement. She hits the ball to us in the pool and when I was feeding her she lifted her arm and lowered her head and wiped her mouth on the towel I keep on her front when feeding by moving her head back and forth. Then yesterday when she was watching TV with her sister Lindsay, Lindsay called out to me to come see Joran was rubbing her nose with her hand! I have been telling her for so long to do more with her hands, to do some of these things for herself, finally her brain has started making the connection.
 
My friend Michele made a beautiful website for Joran www.hopeforjoran.org where she will be posting future updates, pictures and information about the Hope for Joran Bowl a Thon, which will be held on Sunday May 6th at AMF Boynton Beach Lanes from 2-4pm. If you would like to help you can contact Michele at 561-880-5077 or Pastor Parker at 954-651-2636 if you know of a company that will sponsor a team.
 
We are so thankful for the smallest improvements in Joran and for all the help with shopping, cooking and driving and picking up Lindsay, we would not be able to care for Joran at home and see these improvements without your help. Love, Katheryn

*
*
*
*

January 22, 2012
 
I am happy to have Christmas over with. I am some how able to keep it all together through Christmas, but after Christmas I am exhausted. I can’t answer all the emails or phone calls just the ones I need to get Joran’s appointments set up, rides for Lindsay to school and dance and calls for food shopping help. I will be happy to settle into a more normal routine
 
Joran has had many new improvements.  She started therapy at Avenue Therapy and Wellness at the corner of Pipers Glen and Jog by my house. They have a machine called a GIGER MD that is supposed to re pattern the brain to learn to walk again. There are only a few in the country and Shepherd Center has one of them also. Well just after three times on the machine Joran walked in the pool at the YMCA with Brad holding her arm! I am so thankful to Brad and Linda for helping me do this for Joran, it has really made a difference. I have video of both and they will be posted on Joran’s new web site that my friend Michele just created for Joran. If you see it she will be screaming while she is peddling.
 
Joran is also doing better with her speech and her speech therapist says her behavior is much better than when she was in inpatient therapy. Her speech is clearer and louder. She has also has better control of her tongue and can move it back and fourth and has found she can push food she doesn’t want out of her mouth with her tongue much to her delight! I have to promise her is she eats all her veggies and doesn’t spit them out I will call Brad so she can talk to him. She can hold her head up better and does not use her head rest all the time. I removed the side brackets and I am going to start removing the headrest for periods of time so she will be forced to hold her head up on her own.
 
I am still trying to get Joran a standing frame, please pray insurance will approve it this time, and I hope to know this week. Or if anyone knows anyone who has one they can donate or a facility that is upgrading theirs and will donate their old ones. Joran needs to be standing for long periods each day to make use of the surgery on her legs and to get her legs stronger. And if anyone knows a good CNA looking for work let me know good ones are really hard to find.  Love, Katheryn

*
*
*
*

 
December 23rd, 2011
 
We are back home and busy trying to catch up on grocery shopping and cooking and everything. Joran is eating so much more by mouth since before we left for rehab so I can barely keep up. She is eating full meals; Sheppard’s pie, chicken mashed potatoes and veggies or a large plate of pasta and marinara sauce, guacamole and crackers are just some of her favs.
 
The speech therapist said that Joran was not cooperating in therapy as they hoped and a lot of it was behavioral, she thought everything was funny and refused to answer questions unless it was about Brad or something she wanted to talk about. And when she tried to get her to do the mouth exercises because her mouth had atrophied (which could explain why her speech got worse after her surgery) she refused. The sp said she could lose her ability to eat if she didn’t and Joran was listening and you could tell that it made a big impact on her, eating is her favorite thing to do besides seeing Brad. Since we got home Joran has been doing her mouth exercises sticking her tongue out, and side to side and closing her lips when eating and swallowing.
 
Besides speech and her behavior (which I will explain more about) OT /PT worked on her core strength sitting on her own, standing in a stander and stand pivot transfers from the bed to her chair and or to her potty. She is now able sit unassisted longer on her own her upper body is stronger and her legs are stronger and is able to initiate standing with assistance. We have not had to use the Hoyer for transfers since we got home.
 
Because of her behavior they felt that out patient .therapy would be best for her that way we could tell her she could come home at the end of the day if she worked hard and did as she was told and give her rewards such as seeing Brad or food. And it would give us some time to work on the behaviors, exercises and therapy at home.
 
We were so excited about her following commands and kicking her legs when we asked and I kind of told her she could kick butt after she had her surgery instead of kicking her own butt, (because her leg was bent and so contracted when she kicked it, it literally kicked her own butt) so that is what she has been doing every time we bend over or go by and she thinks it is so funny and laughs. But it is not so funny in therapy when she tries to kick the therapist between the legs or an 80 year old man in a walker is walking by and she tries to kick him and laughs. When ever I bump my head or trip on something and say ow! Joran thinks it is funny and laughs and I would laugh also because I was so happy to hear her laugh and be happy, but that only reinforced the behavior which is not good when someone or a child really hurts themselves and Joran laughs. So I need to find something else to for her to do that makes her laugh that is appropriate. And we need to stop laughing when she kicks us and ignore it.
 
Because Joran can stick her tongue out now I told her I would have to get her a Popsicle because she could lick it she said “no Ice cream” so clearly, sometimes when she talk only I would understand her but this was clear. So of course I got her ice cream. And yes we are potty training and it is going pretty well. She in a “no” stage and says no to just about everything except Brad, the color pink and the foods she loves.
 
I hope everyone has a very merry and blessed Christmas! And remember to keep Christ in Christmas, it is not about the presents but being present in the moment and that giving in its purest form, expect nothing in return, and counting our blessings,  not what we don’t have and we are sure to have a blessed day.   Love, Katheryn


*
*
*
*

 
12/21/11
Praise God!

Joran is home from the rehab center and she's doing great!  She made so much progress that she is even using the potty which is a huge blessing!  

Katheryn said she will write an update as soon as she's able but she has a lot to catch up on between laundry, shopping and Christmas preparations.  She said it was a blessing to be home for Christmas and she's going to be busy making more food because Joran is eating so much now!

Please continue to pray for them but also send up Praises for all that has happened in the past year!  God is Good all the Time!

Merry Christmas to all!

Kathryn
 

*
*
*
*

December 9, 2011
Hi Everyone!

Katheryn has not been on the computer but she wanted me to send a quick update!

Things are going very well in the rehab center and Joran is definitely making progress.  We need to pray that she can stay as long as needed and that it continues to go well!

The trial in all this is that Katheryn is away from home and thus away from Lindsay and Terry.  Please pray for patience for them in this trying time - it is very hard on them as well.

As always, Katheryn expresses great appreciation for all that you do and are doing for her and the family!

Please stay in prayer for all of them and have a great weekend!

Kath


*
*
*
*

November 22, 2011
 
We got approval from the insurance company to start Rehab Monday, November 28! I took another tour and earlier in the day and was impressed by all they have to offer Joran. As long as she meets goals set for her, she will be able to stay the 21 days allowed by the insurance company.  Right now it is approved for one week, I am praying she will meet all her goals and get to stay for the full amount of time, come home for Christmas and then go back after the first of the year for another 21 days of rehab.
 
We are able to spend Thanksgiving home as a family and Brad is coming so Joran is very happy. It also gives me more time to make food and pack. We have so much to be thankful for this thanksgiving. This is what we have been waiting for, for so long.
 
One thing we need to work out is where I will be sleeping while she is there; right now it looks like it is a chair next to her bed. They are not like Shepherds where there is housing for families or even cots to sleep on, so this I am not looking forward to but Brad said he would come on his days off Wednesday and Thursday to give me a break so I can come home and make her food and do laundry. Thank you God for Brad and his love for Joran!
 
I am interested is seeing how Joran responds to the new surroundings, caregivers, and therapists, right now when the agency sends someone new like on Sunday Joran screamed and tried to kick her and I could figure out what was wrong, I tried everything food, taking off her splints to see if it was that she was hungry or in pain. But I asked her if she wanted to come in the kitchen with me while I cooked dinner and she said yes and stopped screaming. As soon as the aid came in the kitchen she started screaming and kicking again, it was then that I realized she just did not like her. They told me that once we have a team in place and she likes them, we will have the same team every day which will be good for her to be able build trust in them.
 
One of my favorite verses for Thanksgiving is from the daily devotional Jesus Calling, is from Ephesians 5:20; psalms 118:1 and 89:15; Thankfulness takes the sting out of adversity. That is why God has instructed us to give thanks for everything. There is an element of mystery in this translation: you give God thanks (regardless of you feelings) and God gives you joy (regardless of your circumstances) this is a spiritual act of obedience. To people who don’t know God intimately, it can seem irrational and even impossible to thank God for heartrending hardships. But those who obey God in this way are invariably blessed, even though difficulties may remain.
 
Wishing you all a blessed and thankful day and may God continue to richly bless you and your family as you have blessed mine! Happy Thanksgiving!
 
Love, Katheryn

*
*
*
*

November 17, 2011
 
Joran got accepted to Health South Rehab. Hosp. in Sunrise! It is rated the best in Florida for TBI and Stroke and may not be Shepherd but it is closer and a major step forward for Joran. Praise God! This is what we have been waiting for.
 
They told me we had to come tomorrow but I said no way can I get ready that fast I have to make a couple of weeks of food and supplements, do our laundry and pack and find out what I am going to do with Lindsay for 2 weeks maybe longer. It’s like planning to go on a trip with one days notice, I am a planner, and not spontaneous.
 
We were busy figuring what we were going to do for Thanksgiving, but I know now where Joran and I will be spending our Thanksgiving. I tried to talk them into after Thanksgiving but I figure they are going to be short staffed and will not be doing much therapy from Thursday to the Monday after thanksgiving, but they said Insurance would not let us put it off that long. So we may be going this coming Monday. If I had known they would get approval so quickly I would have waited until later this week to have them come out to see Joran.
 
I am praying that everything works out as it should in Gods timing not ours.  

*
*
*
*
November 11, 2011
 
Joran’s therapists think that Joran is doing so well that she is ready for more therapy than what they can give her that she is ready for the 3 hours of in patient therapy per day.
 
I found a place that is rated the best in Florida for TBI and stroke rehab and takes our insurance, and Sunrise is much closer than Shepherd in Ga. We took a tour and we were impressed by what they have to offer for brain injury and stroke patients. They are sending someone Monday to access Joran and if accepted we may have a fight to get Insurance to pay, as Insurance is denying everything and I have to appeal, get letters of medical necessity, appeal. But they don’t know me I won’t give up.
 
I plan to stay with her because it is too far a drive to make everyday, so I have to make plans for Lindsay during that time.
 
Joran got the Med Wavier and it pays for about ½ of her supplies and nursing assistants CNA’s and will be put on hold while she is there.  If I can’t get her in I will have to cut the hours of help I have for Joran, which will be hard since once you get used to the help it is hard to give up.
 
Please pray that this will work out great for Joran, it would move Joran forward more since I can get her up standing but it is not safe for me to do more, and she is ready. Also it would save us on a month of supplies and expenses. Also since I am trying to get her a Dynovox speaking device and an Easy Stander the Case Manager will help me to get them before she is released. Also she will qualify for OT/PT speech through the Brain injury Assoc. since our Insurance is limited on coverage. So there are many pluses for her to make this step.
 
Thank you for all you love, help and prayers, Katheryn
 
*
*
*
*

November 7th, 2011
It has been difficult the last 6 weeks since Joran’s surgery, she has had a lot of pain and difficulties with the hematoma and needing two pints of blood and I have questioned putting her through it, until just now when she was kicking her leg to get out of bed so I got her on the side of the bed like I always do for what I call Mom therapy, but this time she used her legs herself to stand on the side of the bed! That made it all worthwhile! I can see she is so ready to do more in therapy, and every day it is getting easier to take care of her and she has started sleeping through the night more often
Joran will not be doing the Hippotherapy at this time as they said she was not ready, that she needed more trunk control, which was very disappointing for both Joran and I, she really wanted to do it. We will try again next session in January.   
But my neighbor Linda who was a teacher of kids with disabilities like Joran’s at a school and swim instructor suggested we do pool therapy at the same place where Carmen, Brad and I were trained to do it before. So Thursday instead of Hippotherapy, Linda, Brad and I took her to the pool, where she enjoyed kicking her legs up and down and stood up in the pool which she could not do before her surgery.
I am sorry if anyone tried to contact me by email in the last two months my computer was broken so I am way behind on messages. My very nice neighbor Bruce who is an IT computer person fixed it for me. We can’t afford a new one and it would have cost too much to pay to fix it so I am very grateful, he did a great job it was a complex problem. So if you know anyone looking for someone in IT he is looking for a job. My other neighbor Charles fixed the TV, DVD set up so Joran could watch TV and DVDs again.
Someone told me recently that we were so lucky to have so many nice neighbors. We are very blessed to have so many neighbors and friends willing to help out; I could not do this alone, and I am thankful.
*
*
*
*
October 24, 2011
Joran is beginning to feel better and the hematoma is healing as well as the scars from the surgery. There are many small improvements every day. Tonight she moved her left arm up and down a lot.
This is a big week, today Joran got the casts removed from her legs, she is being accessed on a sit to stand devise called a Easy Stander, and she starts Hippotherapy. Hippotherapy is Greek for horse therapy. The horses walk is very good for sensory input to the brain because it is similar to human movement patterns of the pelvis while walking, improve balance and posture. (if you want you can read more on it below)
 Joran's boyfriend Brad has been an amazing help, driving with us to Miami Childrens Hospital and going to therapy with Joran and helping with therapy at home. Hopefully God willing we will be bringing Joran and Brad to church this Sunday. Hope to see you there!
 Hope you have a great week too and God bless!  Katheryn
What is Hippotherapy?
Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Historically, the therapeutic benefits of the horse were recognized as early as 460 BC. The use of the horse as therapy evolved throughout Europe, the United States and Canada.
Hippotherapy uses activities on the horse that are meaningful to the client. Treatment takes place in a controlled environment where graded sensory input can elicit appropriate adaptive responses from the client. Specific riding skills are not taught (as in therapeutic riding), but rather a foundation is established to improve neurological function and sensory processing. This foundation can then be generalized to a wide range of daily activities.
Why the Horse?
The horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results. Clients respond enthusiastically to this enjoyable learning experience in a natural setting.
Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include Cerebral Palsy, Multiple Sclerosis, Developmental Delay, Traumatic Brain Injury, Stroke, Autism and Learning or Language Disabilities. However, hippotherapy is not for every client. Each potential client must be evaluated on an individual basis by specially trained health professionals.
More about the American Hippotherapy Association
Formed in 1993, the American Hippotherapy Association's mission is to promote research, education and communication among physical and occupational therapists and others using the horse in a treatment approach based on principles of classic hippotherapy. Registered therapists in hippotherapy are located throughout the United States and Canada.
 

*
*
*
*

October 13, 2011
I was able to visit with Katheryn and Joran yesterday and have an update!

Unfortunately computer problems have prevented Katheryn from sending one and to replying to any of you!

Joran did leave the hospital at the beginning of the week and thankfully it was not an infection but a Hematoma which the nurses/neighbors had thought!

After tons of tests, they did find her hemaglobin was low though at 7.0 and she needed two pints of blood.

So they did end up spending the night and of course got no sleep with all the beeping and bells going off all night!

Please pray that the hematoma clears up soon and that there are no further complications!

A personal note from me ... what a blessing to have Joran say hello to me and for me to be able to watch her eat!  The miracles continue!

Love -

Kath


*
*
*
*

October 7, 2011
It has been difficult the last two weeks since Joran surgery, it requires two of us to turn her and change her because her casts are so heavy and it is painful for her to be moved. We haven't been able to get much sleep.
 
Now her leg is not healing in one spot like the rest and is swollen hard and infected, so I have to take her back to the hospital. Please pray for her that the infection does not spread anymore and that she will be able to come back home. It is causing her a lot of pain. I thank God my neighbors are nurses and have helped us through this.


*
*
*
*

September 26, 2011
 
Joran’s surgery was successful and her knee and feet are now straight. We will be able to start therapy next week to start getting Joran standing.
 
Her heart rate has been up all day which is scary, but the pain meds help to bring it down. She is more alert today, but right after surgery she was so out of it, it was it reminded me how far she has come.
 
I forgot to add in my last update that Joran can spell her name. When someone asked how to spell Frogner, Joran started spelling it then I asked her if she could spell Joran and she did! I thought maybe it was from hearing me spell it to so many people on the phone. My neighbors’ daughter came over and asked Joran if she could spell her name which is Amy and she did, all this is from memory! Amy is a 6 year old neighbor who comes over to help Joran and will show her ABC flash cards.  I asked her to spell her sisters name and she said L I N D S A Y! And when asked how to spell her boyfriends name she said BRAD! Praise God!
 
 She can also roll back over when she is on her side when we asked her to. Well that is all for now, thank for all the prayers and help this week.
Love,
Katheryn
 

*
*
*
*

September 20, 2011
 
Joran ate a full meal today; fish, potatoes, asparagus, I didn’t have to purée it! In fact she is eating more by mouth and less by tube every day. And she is shaking her head yes or no to what food she wants and lets us know when she is full. She feels more in control since she can communicate better and there is less screaming and kicking.
 
We are busy getting ready for her surgery. Pre op visits, blood work, x-rays etc. Then they threw at me last minute I need to get clearance from a cardiologist, pulmonologist, and neurologist.  But with the help of Janice and the missionaries from her church we got about half of Joran’s food made today I could not have done it and made the doctor appointments.  But we did it and got the clearances. I am excited and nervous about the surgery at the same time.
 
Some of you know I have a love/ hate relationship with the wheelchair van. First I had hoped Joran would not need one and then when I resigned myself that her days in a wheel chair were going to be a long time, I gave in. Then the van required a lot of work and money to make it safe and it was breaking down a lot and not to mention I need someone with me to help me with Joran. Well today I know I would not have made two doctor appointments in one day on Palm Tram plus this surgery at Miami Children’s Hospital would not be possible or very difficult at best with out it, I am starting to like the big old ugly thing!
 
Her pulmonologist today could not believe how much Joran has improved he said it is like night and day that it was a miracle! He said I was doing a great job and I should be proud. I told him it is Joran I am proud of she is my hero, she is so strong and a fighter. Many people complain about simple aches and pains or minor daily struggles and can’t find anything to laugh about. But Joran with all she faces every day she smiles and laughs and tries so hard to do what she is told, her strength keeps me strong.
 
Please pray for successful surgery, thank you and God bless.
 

*
*
*
*

September 14, 2011
 
 
I am so excited! Joran was getting her feeding tube dressing changed by the CNA and started crying, which is not unusual but I asked her what was wrong and she cried out Momma! I have been waiting so long to hear that. I told every time she needed me to say it. I may only get tied of hearing it if it is at 2am! She is also shaking her head yes and no.
 
I was on the phone making arrangement for her surgery, when I hear her laughing so hard and I asked what is so funny and the CNA said she is passing gas and thinks its funny it was so sweet to hear her giggles!
 
 
*
*
*
*



September 12, 2011
 
Hi everyone,   Thank you for the prayers. They were able to get another feeding tube back in the same site in radiology and it did not require a surgeon. I was told when a tube gets pulled out the whole closes in a couple of hours and since I did not know for sure how long it had been out and I could not get in back in at 5am this morning, I thought for sure they would need a surgeon to go in a different site. Plus she has what we thought was a stoma growing around the site of the feeding tube, which causes her a lot of discomfort and leaks and bleeds, but it turns out it is part of her stomach that has prolapsed.
 
The way I found out this is I took her to a general surgeon to have it looked at and removed and he began to cut it and burn (cauterize) it in his office with no numbing or anesthetic. She began to fuss and scream and he assured me it was dead tissue and she would not feel it. I said it sure seems like she feels it. And it grew right back, so he wanted to do it again. So I took pictures of it and sent it to a general surgeon at Miami Children’s Hosp. and she called me right back and said it was not a stoma but her stomach which has prolapsed! I am so glad I didn’t go back to him!
 
I have a consult at Miami Children’s when we go for her contracture releases with the general surgeon to look at fixing it or moving it. But what I am praying for is for her to continue to eat by mouth in increasing volume and to the point she can get it removed. She is still not able to drink much water yet so she would have to be able to before it could be removed.
 
 
Joran’s boyfriend Brad has really been great through this past year and I told him he is like family my adopted son. Not only did he come to the Hospital today and help me with Joran but I left the house in such a hurry that I forgot my house keys and he drove all the way to Lindsay’s school to pick up her keys and came back to the hospital to help me get her onto the van. Plus Joran’ lights up when she see’s him!
 
I just want you to know it was fixed and we were at home, and am looking forward to us all a good night sleep now that Joran is on a new dose of sleeping meds. Joran is laughing right now and trying to kick the pillow off the bed, I think she is trying to let us know it is time for bed.
 
 
Love, Katheryn



September 12th, 2011
911 Update

Joran, and I are getting ready to go to the ER she pulled her feeding tube out. She will need to have surgery to relocate, please pray, she of course is asking for food and I can't feed her. If anyone can come to the hospital, i would love the company and support!

*
*
*
*
September 8th, 2011
 
Thank you everyone who helped us in the past year since Joran came home from the Hospital from her infection with MRSA and sepsis, it was a year ago this month she came home on Hospice. And thank you to all of you who celebrated her 22nd birthday with us and her amazing recovery, I feel blessed to have all of you in our lives. I look back on how sick Joran was a year ago and how much she regressed during that set back and it is truly a miracle how far she has come.
 
Tonight Joran heard Lindsay asking for ice cream and Joran said “ice cream” I asked her do you want ice cream also” and she said yes. I asked her what kind and it sounded like chocolate. As you know she can’t say all her letters or sounds that require her to close her lips like B’s. So I asked her do you want vanilla with chocolate chunks?  She said no Chocolate. So we got her chocolate. Since she does not close her mouth all the way food that is not thick will run out. So I was feeding her the ice cream and keeping it from running out, I told her she needed to close her lips if she didn’t want it to run out and she did for a moment, so this may be an incentive to get her to close her lips which is important for her to be able to keep liquids from running out and for saying words and letters that require her to close her lips.
 
Joran has been eating so much I can not keep up with making and feeding her food. That is all she wants to do. I taught her to say “eat” when she wants more food which she says it all day and night. She wakes me up at 2am with “eat, eat” and at 4am she is louder with “eat, eat” until I gave her a banana. She still takes food bolus by tube and eating more everyday by mouth. She has a smoothie first thing in the am followed by a big bowl of cereal and fruit by mouth. Then she has her supplements and applesauce. At lunch she has a bowl, of soup and a mashed avocado, a bowl of pasta and marinara, cereal and fruit for snack, and dinner will be non stop eating from 4 to 8pm which was 2 bowls of bean veg. soup with pasta, mashed potatoes and a chocolate raspberry pudding. Then she had chocolate ice cream right before her sleeping pill. After her sleeping pills which the Dr. increased so we could all get some sleep, she was still saying “eat, eat” with her eyes closed!
 
Joran will be having surgery on September 23 at Miami Children’s Hospital, to release the tendons on her knee and ankles, so she will be able to stand. But I will tell you more next update as I had better get some sleep while I can in case she wakes up. She woke me up the other night (screaming) and I asked what was wrong she said “nothing new!” Then I asked her if she needed anything and she said “you”. I think is just gets scared or something wakes her and she is lonely. So hopefully this new dose will work and she will sleep all night.
 
 



August 29, 2011
 
I am sorry I have not been able to update in a while since Joran had her seizure and was taken to Delray medical. Again I signed a release and took her back home. We increased her seizer medication and she has not had another one since. It took about three days for her to start getting back to talking and smiling, she was so sleepy; it took a lot out of her.
 
But now she is back to her old self, smiling laughing and talking. Mostly she says eat, food, and eat again. I ask her what do you want to do today Joran and she says eat! When I am feeding her, I tell her if she wants more food she must say “eat” so I don’t over feed her. So she says eat and thank you for each bite.
 
She also likes to say “I love you” and I tell her “I love you more” and she tells me “no” She’s loving and thankful, It is like she was before she became a teenager.
 
I got the hydraulics replaced on the van because they were leaking fixed one of the broken arms and a seatbelt on the lift. One of the previous owners liked to fix the van with duck tape when things broke. It was comforting to have it done before our trip to Miami Children’s Hospital for our consultation with a Pediatric Orthopedic on Joran’s contractures on her wrists and knee. It was also great to have Terry and Brad go with us.
 
Dr. Tidwell said that he would perform surgery to lengthen the tendon to her contracted left knee and straighten it so that we can get her into a stander. He said he would not do the tendon releases on her wrists and elbow. He feels they can be straightened with OT and splinting. Plus if he did her left wrist the worst one now she would not be able to move it would be frozen. Her surgery is set for September 23.
 
Now I am trying to find a stander vendor who takes Blue Cross and find a rehab facility for her to get out patient therapy after the surgery.
 
I have been spending so much of my time making food for Joran and feeding her and doing her therapy my self since Ins. won’t pay, it doesn’t give me much time to update. Also my home phone is not ringing, it’s working but I can’t hear calls coming in, so if I missed your call I will try to call you back.
 
Well I was going to bed but Joran is screaming again so I need to go and see what is wrong so we can all sleep.
 
God Bless, Love Katheryn
*
*
*
*
 
August 13, 2011
Joran was taken to the hospital tonight after having a seizure.  Please pray that she is okay and that there are no setbacks from this after all the incredible progress that has been made!  Also pray for strength for Katheryn as always!

Beth ... please add to the prayer chain when you see this!

Thanks everyone!

Kath


*
*
*
*

August 1, 2011
 
It has been an eventful and exciting week; first I picked a case manager for the Medicaid waver, and am waiting for them to get the paper work so they can come out and select services and supplies for Joran.
 
Joran said her ABC’s and we have been doing flash card for her and she is doing great but can’t say her B’s, M’s P’s and W’s so we have to really listen to understand some things she says.
 
 She had a great aqua therapy session at the YMCA and while we were there the Shepherd Center admissions coordinator Ginger called and is coming to our house tomorrow to access Joran. Please continue to keep her in your prayers that Ginger sees all the improvements that we see in Joran.
 
Right now Joran is screaming, she tells me one thing and then a few minutes later she will start again, I need to figure out what is wrong so we can both sleep. I will update again as soon as I know anything.
Love, Katheryn

*
*
*
*

July 22, 2011
 
Joran is saying more and more words each day, but she can’t say her B’s M’s or P’s because they require closing her mouth. So today she started speech therapy to work on it. Because she can’t say B she says rad for Brad.
 
She is smiling and laughing more also and Sunday a group of her friends came over for a “party” she was smiling ear to ear the whole time.
 
Tonight I was wheeling her into the kitchen when her chair got in the way of her cat and when the cat turned to get out of the way she ran head first into the trash can. She chuckled so hard! In fact she is smiling and laughing more and has quite the sense of humor!
 
Yesterday I took Joran to the pool and since I can not get her in the pool safely I brought our hose attachment and put it on the pool hose and I sprayed her with a light mist and washed her hair and was able to rinse it like a real shower! She loved it! Now I know I can take her to the pool with the family and keep her cool. I was practicing in getting a baiting suit on her (mine) and what would fit etc… so I could go out and buy her one for her aqua therapy on Wednesday.
 
 This morning I asked her how long she had been up and she said "forever." I said forever is a long time and asked her if it was a ½ hour and she laughed and said yes (Terry told me he had checked a ½ hour earlier and she was sleeping) Then I asked her what she wanted to do today thinking since we had such a nice time at the pool yesterday she would say she wanted go to the pool but she said "eat!"
 
This weds. Joran and I took a friend Cheryl out to Ellie’s Diner for dinner; she has been making dinner for us every Weds. for a year so we wanted to treat her. Joran’s Boyfriend Brad was cooking and made a delicious dinner and Elvis was singing. She had so much fun! We all did, It is a lot of work to get her out but I hope to do it more now.
 
Love, Katheryn

*
*
*
*

July 5, 2011
 
I came home today and the CNA had Joran in her wheel chair and I went up to her and said “hi Joran” and smiled and she smiled back at me and said “hi”, I asked her how she was doing and she said “fine”! I was so excited! That shows she is really understanding and not just saying yes or no to everything we ask. I have been praying for a year for this kind of response from her, it is a miracle.
 
When Janice Lieber and Linda Askin came over they asked her if she remembered them and she said yes and smiled at them.
 
She is so hungry and I am feeding her every 2 hours during the day instead of 3, and she is also eating more and more quantity food by mouth every day. I found that food made not too thin or thick is the best and she is able to push it to the back of her mouth and swallow it. If it is too think it stays in ball in her mouth, if it too thin it drips out. She just ate a large bowl of cereal and banana!
 
Thank you all for your help with food and shopping, I couldn’t do this with out you.
 
Love, Katheryn

*
*
*
*
June 30, 2011
 
Joran wouldn’t talk for her Skype visit today with Shepherd. It was very disappointing because they said she was not ready and would have to have hip surgery first anyway. The Orthopedic Surgeon we went to yesterday said he couldn’t treat her and we would have to find an orthopedic surgeon that specialized in pediatrics or kids with CP or hip problems due to spasticity like Joran has.
 
But she did just say to me “I’m hungry”!!!!! It is so hard because the Skype visit is so short and not enough time to see all she can do or to hear her speak.
 
But on the up side Brad and two of Joran’s friends came over and she smiled and looked at them and you could tell she remembered them. And she is saying more words everyday and eating more and more by mouth only about half of it gets down and the rest goes all down her front. She seems to be getting over her cough and so am I. And I have slept the last two night in my own bed with the baby monitor and have only had to get up once in the middle of the night to change her and turn her. That is down from about every hour or 5 to eight times a night while she was sick. Well I’m off to bed to try an catch up on some sleep.
 
Love, Katheryn
 

*
*
*
*

June 29, 2011
 
Joran’s learned more words! Last night I told her I love you which I tell her multiple times everyday. This time she said I love you back! I asked her did you say I love you and she said yes and smiled. I am overjoyed! This am when I woke up and went to her bedside she was already awake and I said hi, you’re awake and she said hi and smiled back at me! I get so excited and I clap and tell her I am so proud of her!
 
She has her Skype visit with Shepherd this Thursday, and I am praying they see all the new improvements I have witnessed and that they will accept her for rehab. Once accepted at Shepherd, when she came back home she would be illegible for rehab through the Brain injury association.
 
Today we have an appointment with an orthopedic to see what we can do about her hip and knee and access her contracted left wrist that was broken in the accident. We are trying to straighten the right one with braces, but the left one is too bad and will require surgery someday.
 
I discovered that the thieves took my 10th Ave North CD when they stole the stereo, maybe God has a plan and will work through them if they listen to it??????
 
Thank you again for your prayers and help, hope you have a blessed day!
 
Love, Katheryn

*
*
*
*


June 25, 2011
Breaking news: Joran said two more words; I was playing my usual game with her about her leg and she crossed it over like I asked and then put it on her knee and smiled. I told her I was going to have to tickle her foot and cried out Nooooooo! She looked upset. I asked her if something was wrong and she said Nothing…… and smiled a big grin at my excited joy at her new words!  Love, Katheryn

*
*
*
*
June 24, 2011
 
We went to Delray Hospital last night as Joran’s primary told us to, since she could not see her right away and the Pulmonologist was away on vacation. The one nice thing about having a wheelchair accessible van is that we could make a trip without calling 911 or waiting a day for Palm Tram.
 
We are thankful she did not have pneumonia she has acute Bronchitis and the x-rays showed that her hip is not dislocated as PT thought or dysplasia as her DR. thought but Laterally subluxed left femoral head, in layman’s terms her hip joint is loose but not dislocated but it is very painful and she screams in pain when we move it. It is caused by the fact that she has spasticity and contractures that were causing her hip and her legs to want to cross over each other. When she came home from the hospital in October it was worse, her spasticity has lessened and also I began using Velcro and pillows to hold her legs straight all night.
 
We have an appointment to see an orthopedic doctor nest week to see what we can do about it.
 
Well the van has had so many problems since we got it and Sunday it was broken in to. The thief took the only good thing about the van, the stereo. I found out Tuesday when I went to leave for a Doctors appointment that the thief was tall as he pushed my seat all the way back, and my low fuel light was on and realized he had siphoned off the gas tank. One of our neighbors saw him running off with a gas can, and described him as while male about 35, tall and stocky with a goatee and he got into a grey possible Oldsmobile.  So be on the look out and remember to lock your cars.
 
I was going to sell the van because I did not feel safe going out in it not knowing if it would break down again and have Joran get trapped in it and not know who to call.  I decided to keep the van after I found a lift dealer that could do the needed maintenance work on the lift. I would not have felt safe keeping it if I didn’t find them. I can call them 24 hours a day 7 days a week if something goes wrong with the lift.
 
Thank you for all the meals, help and for Michele stepping in to do the shopping while Linda is on vacation. Trish came and helped me with Medicaid and Brenda is helping with medical billing, I just couldn’t do it all without your help and support.
 
Love, Katheryn