KAYLA ELISABETH JONES

All of the text bellow is copied from the daily e-mail updates sent by the Jones family's pastor.


TUESDAY, MARCH 30, 2004 @ 6:32 AM Hi Everyone-- I'm sitting in the Consultation Room at the Medical College of Georgia (Children's Medical Center). We had an annointing service for Kayla last night. I invited Brennan Francois (a Seventh-day Adventist Chaplain at MCG) and Bruce Trigg (the grandparents' pastor) to participate in the service. It was short and to the point, since I had to get special permission from the staff to allow all of us in the PICU room at one time. There were about 12 of us in there. The surgery is scheduled for this morning. The neuro-surgeons are planning for at least 4-6 hours. The aneurysm is on the left middle cerebral artery. It's very unusual and even more rare in children. Please pray throughout the day that the surgery would be successful and that God would grant Kayla a complete healing and recovery. Thank you for your prayers. We will keep you updated when we can. Kamil
TUESDAY, MARCH 30, 2004 @ 3:10 PM I have some good news to report from the Pediatric Intensive Care Unit at the Children?s Medical Center at the Medical College of Georgia in Augusta. Kayla had her surgery today. It took about 5 hours (+1 one hour of pre-op). She got out about 1:30 PM. In the words of one of the three surgeons who worked on her, the surgery went ?perfect.? They are very pleased with the results. At the same time, her condition is still very serious and Kayla is not yet out of the woods by any stretch of the imagination. The staff is guarded but optimistic. She will stay here at the hospital at least another 7 days, but probably even longer than that. There is a risk that she could have a stroke, severe swelling of the brain, her veins could spasm, as well as other complications. Thank you all for your prayers and please continue to pray for Kayla. We are praying for a complete healing and recovery. Some rough days are probably ahead. You can send e-mail to Kayla and to the family through the website of the Medical College of Georgia. Go to www.cmc.mcg.edu and click on the ?Get Well? link on the left side of the page. If you would like to call the family, the phone number for Kayla?s room is 706-721-5387. Thanks again for your prayers. Kamil
WEDNESDAY, MARCH 31 @ 2:44 PM Kayla had a good night. As we expected, she is swollen as a result of the surgery. She had a CT scan done last night and it looked good. She is still sedated and will be until late tomorrow or Friday. She will have an angiogram done tomorrow and if it looks good, the doctors will give her drugs to reduce the swelling and gradually take her off the ventilator. I had to leave the hospital today to get some things done in Statesboro. Loretta drove me home and will be going back to stay with the family. I will be joining them again sometime later this week. Please continue praying for Kayla. Apparently, day 4 after an anyerism is critical. Day 4 is tomorrow (Thursday). We trust that God will answer our prayers and grant Kayla complete healing. For those of you who want to call, please note that the phone number for Kayla's room has changed again. It is now 706-721-5388. The number I e-mailed yesterday should not be used anymore. Also, the information that was given to us by the hospital about e-mailing Kayla was wrong. The correct address is http://www.mcghealth.org/cmc/. When the page loads, click on the "Email a Child Patient" link on the left side. Kayla's room number is C3930. All of us greatly appreciate your prayers. Kamil
THURSDAY, APRIL 1 @ 10:19 PM Kayla had an arteriogram and a CT scan today. The angiogram showed pretty good blood flow past the aneurysm site, and the repair is good. Also, there is some constriction of some vessels in the brain. The CT scan showed some signs of stroke. The neurosurgeon said there may be some weakness on Kayla's right side as a result, but children that age usually overcome that condition. For today and tomorrow, Kayla was/will be given some medication to keep her blood pressure up and reduce the swelling from surgery and inactivity. She should start waking up sometime tomorrow. She is moving her right arm and leg, but movement on the left side is very limited. However, she does respond to pain on the left side. Please continue praying for her full recovery and that the effects of the stroke might be reversed. You can continue e-mailing Kayla at http://www.mcghealth.org/cmc/. When the page loads, click on the "Email a Child Patient" link on the left side. Kayla's room number is C3930. She received 30 e-mails yesterday and 36 today. Keep them coming! For those who would like to help with the medical and other expenses related to Kayla's treatment, we have established the Kayla Jones Charitable Giving Fund. All donations to this fund are tax deductible. Statesboro church members can give to this fund by writing "Kayla" on a blank tithe envelope line. Others may contribute by mailing a check to The Kayla Jones Charitable Giving Fund P. O. Box 143 Statesboro, GA 30459 Thank you all for your prayers and support. Kamil
FRIDAY, APRIL 2 @ 1:06 PM The physicians made the decision this morning to keep Kayla sedated for another day to allow for more healing time. They took the bandage off her head, but she won't be waking up until tomorrow. They are also wanting to give Kayla more blood, but she has a rare blood type, and they can't locate any blood with her type. Please pray that they would get some in soon. Also, as requested before, please continue praying for Kayla's full recovery and for the reversal of whatever damage the stroke activity might have caused. Thank you for your support, Kamil
SUNDAY, APRIL 4 @ 12:38 AM Kayla had a relatively peaceful day. She had a CT Scan which showed definite stroke activity on the left side of the brain. The physicians are waiting for the swelling of the brain to go down and for the vasospasms to diminish before they start waking her up. From what I understand, they said that at this point "the ball is in her court." They will start waking her up when they see signs of improvement. Please continue praying for both Kayla and the rest of her family. The wait is getting to be long, but we trust that God is leading the physicians in the decisions that they are making. Kamil
SUNDAY, APRIL 4 @ 6:44 PM Kayla had a good night and a relatively calm day. She keeps trying to scratch her left eye and nose with her left hand. She also got a hold of one of the breathing tubes at one point. At this point, the physicians are just giving her body more time to heal. They're still waiting for the swelling and her temperature to go down even more. She will have another CT Scan tomorrow to evaluate the progress and then they will decide when they will start taking her off the ventilator and off of anesthesia. Please continue praying that the swelling and temperature would go down and that the effects of the stroke would be reversed. And, of course, continue praying for Kayla's parents, brother, and the rest of the family. I will send another update when we have new information. Kamil
MONDAY, APRIL 5 @ 10:47 PM First, let me thank all of you for continuing to pray for Kayla. She had a CT Scan today. There has basically been no change since her last one (2 days ago). However, she is being weaned off the sedatives and off the respirator. Her fever also seems to be going down and she is moving a lot more now that she is being taken off some of the medicine. The physical therapist came in today to do some exercises with Kayla and she seemed to like that. One of the physicians who came to talk to the family today said that we won't know the total extent of the brain injury for about 6 month. Kayla and her family still need our prayers and support. Some have asked for a reminder about Kayla's e-mail address. You can continue e-mailing Kayla at http://www.mcghealth.org/cmc/. When the page loads, click on the "Email a Child Patient" link on the left side. Kayla's room number is C3930. Please continue praying, Kamil
TUESDAY, APRIL 6 @ 10:54 PM Thanks again for your prayers and support. Kayla continues to be weaned off of the medication and the ventilator. We're told that tomorrow (Wednesday) will be the big day. She is expected to be very hoarse and cranky. We're also facing some challenges this week with the new staff. All of Kayla's surgeons and doctors that worked with (and on) her prior to and immediately following the surgery are off this week. The new staff sometimes wants to make decisions without checking on Kayla's history. Please continue praying for Kayla, her family, and for the staff. We trust that God will heal her and help her overcome all the obstacles that are ahead. We have 10 intense and emotional days behind us. Several more are ahead. Everyone is getting tired and we all wish this whole ordeal were behind us. But we thank God for what He has done so far. Kamil
WEDNESDAY, APRIL 7 @ 9:15 PM The weaning process is over and Kayla was taken off the ventilator tonight. We expect that she will be quite cranky tomorrow. She's been moving her left arm and leg quite a bit today. We're still waiting on the right side. It's strange but very nice to see her hooked up to only two or three bags of medication at one time. Her parents, Paul and Lisa, will stay up with her all night to do as much comforting as possible. Thankfully, the grandparents have stayed up some of the nights, so Paul and Lisa did a few nights during the past week and a half. Continue praying that Kayla would continue to heal and recover fully. We're thankful that God has brought her thus far and confident that He will grant Kayla complete healing. Kamil
THURSDAY, APRIL 8 @ 6:08 AM Hi everyone-- I know all of you are praying, I just wanted to encourage you to not get tired of doing good. Please continue remembering Kayla often. She had a rough night and scared us quite effectively. She began to have difficulty breathing in the middle of the night. The staff monitored her and tried to determine the cause of this problem. They eventually concluded that her glottis was swollen and wasn't allowing enough air to enter the airway. Kayla was finally intubated again and put back on the respirator before 6 am. Our little fighter continues to fight the good fight, so please keep praying. Kamil
THURSDAY, APRIL 8 @ 12:53 PM Kayla had a CT Scan this morning. We don't have the results yet. She has been sedated again and will remain so for at least 48 hours before the staff even considers extubating her again. She is being given time to rest after the rough night she had. We learned today that there are only five other documented cases like hers in the whole world. Your prayers are still very much needed! Please continue remembering Kayla and the whole family as we continue to wait. Kamil
FRIDAY, APRIL 9 @ 10:28 PM Kayla had her staples taken out today. Her incision is healing very nicely. She is still sedated, on the respirator, and receiving steroids to reduce swelling. She no longer has a fever. The transcranial doppler showed no vasospams, which is a very good sign. The family received two different opinions on the CT Scan from two different doctors. One said that it's about the same as the last one, the other said that it's a little better than the last one. The staff should begin to wean Kayla off the sedatives and the respirator within the next two days again. Please pray that this attempt will be successful. Kamil
SATURDAY, APRIL 10 @ 9:04 PM Kayla had a restful day today. Her blood pressure spiked at times and the staff is controlling it with medication. She is still fully sedated and on the respirator. When she was first intubated two weeks ago, her tube had a cuff on it that prevented any air from entering or escaping her airway outside the tube. This cuff is what irritated Kayla's glottis and caused it to swell. When she was intubated again 2 days ago, she was given a tube without a cuff. This way, the staff can monitor "the leak" around the tube and thus judge the amount of swelling. Kayla received her last dose of steroids to reduce the swelling this morning. The weaning process could begin as early as tomorrow, but that decision has not yet been made. The weaning process starts by taking Kayla off the medication that paralyzes her muscles. When that's done, she will start moving. It is followed by the gradual decreasing of the sedatives as well as the gradual decreasing of the amount of breaths the respirator delivers each minute. When the staff is confident that Kayla can breathe on her own (based on the amount of breaths she takes each minute, her oxygen saturation and her carbon dioxide level), the tube is taken out. Please pray that the staff would choose the right time for weaning and extubating and that the extubating would be successful this time. Also, please remember the rest of the family in prayer. Also, please note that Kayla now has a web page that contains all of the previous updates, contact information, as well as information on contributing to The Kayla Jones Charitable Giving Fund. The address is http://kayla.familyjones.org . Kamil
SUNDAY, APRIL 11 @ 8:51 PM Well, the staff began the weaning and extubating process again today. It seemed like they might complete it today, but around 6:30, the decision was made to wait until tomorrow morning. One of the neurologists said today that the last CT Scan looked better than the previous one and that the right side of the brain is compensating and sending blood over to the left side. The swelling is down as well. Please remember Kayla in your prayers as she is weaned and extubated tomorrow. Don't forget to visit Kayla's webpage for the latest updates and for contact information (http://kayla.familyjones.org). I hope I will be able to send you an update tomorrow with some very good news. Kamil
MONDAY, APRIL 12 @ 7:45 AM Kayla was extubated this morning around 6:00 AM and is doing great so far. She is sleeping at the moment. I will send more information when we know more, but I did want to share the good news. Kamil
MONDAY, APRIL 12 @ 9:15 PM Kayla rested most of the day. She will be gradually taken off the sedatives, but the process will take several days. All her vital signs are looking good. Two of the neurosurgeons who performed the surgery returned from vacation today and were encouraged by Kayla's progress. She is receiving medication (as needed) through a nebulizer to keep swelling down in her throat. She is moving her left side a lot more than the right side but has wiggled her fingers on her right hand and moved her right elbow and hip. A full evaluation of her ability to move will be done after she is completely taken off the sedatives, but her progress is encouraging. Please continue to pray for Kayla's complete recovery!!! You can always read the latest updates on Kayla's web page at http://kayla.familyjones.org Thank you for your prayers and support. Kamil
TUESDAY, APRIL 13 @ 10:10 PM Here is an update written by Paul (Kayla's dad) today: Kayla rested pretty well last night. When she is awake she is quite cranky. The doctors have said this is expected from brain injuries and being in ICU for so long (informally called "ICU Psychosis"). Her throat hurts but she needs to cough to keep her throat clear. She is breathing mostly room air now and is 95-98% saturated. Physical and Occupational Therapy are working with her now. She was given a sedative for her CT scan this morning, and is still pretty much "out of it". We'll hear the results some time today, but not sure when because Dr. Lee has a couple of cases he's working on today. (The word on the scan is that it looked better than the last one.) Attached is a picture of us with Kayla, the first time she has been held since Sunday morning, March 28th. She was quite calm and as you can see, we were very happy. Thank you for your prayers. Please also pray specifically for one of our neighbors here, the Holton family. (Their baby girl lost the battle with her illness today.) Kamil

WEDNESDAY, APRIL 14 @ 10:30 PM Kayla had an eventful day today. They are continuing to wean her off the sedatives. She had physical and speech therapy today. The physical therapist had Kayla follow simple commands and had her sitting up (with support). The speech therapist tested Kayla's swallowing skills by giving her water in a spoon. Kayla smiled after swallowing water (the first thing past her lips in 3 weeks). A more detailed swallowing test will take place tomorow afternoon. She hasn't said anything yet but that's not surprising after what she has gone through. She still has laryngitis from having a tube in her throat for two weeks. The best therapy so far has been her brother, Austin. He managed to get more smiles and giggles than anyone else. They played peek-a-boo and gave high fives (with Kayla's left hand, of course). She does have some limited movement on the right side as well, though. They removed the IV from her right hand today, so she can move it more easily. Tomorrow will probably be another busy day for Kayla. Please continue praying for her quick and full recovery. Kamil
THURSDAY, APRIL 15 @ 9:30 PM Here is another update from Paul: Kayla rested well last night and had a pretty good morning. Both of us got to hold her for a while this morning and she watched Blue's Clues and Little Bill. She had a barium swallow test to see if she could swallow correctly. There was some slight aspiration. Aspiration is not good, but overall the test seemed to go well. I haven't heard the official results, but Kayla will be able to eat some foods the consistency of thin pudding for now. She was hungry, as you can imagine, since she hasn't eaten anything since March 27th. Kayla only has 4 wires and one tube attached to her now, which all can be disconnected for short periods. Her central line is to be removed soon, but she'll have to have another IV stick. Since she doesn't need to have IV poles and monitors traveling with her she got to ride in a wagon to Radiology for her test. She wasn't sure what to think of it. The plan is to move her out of PICU on Friday. She has been cranky all afternoon--probably due to pain and withdrawal from all the sedatives she has been on. She has a 14-day weaning protocol to get her off of those drugs, and she'll be very irritable most of the time. Those 14 days start today. Thank you for all your prayers, and please continue to pray. Kayla's withdrawal process will be a tough couple of weeks, as well as her rehab for a long time to come. Paul
FRIDAY, APRIL 16 @ 9:30 PM Kayla was moved from PICU to the fourth floor today. Normally, the patients move to the fifth floor but one of the 5th floor nurses was abducted yesterday from her mother's house and the fifth floor crew is having a hard time functioning at this time. For the first time since her hospitalization, Kayla had pureed food (mashed potatoes, peas, and chicken). She enjoyed it very much. She wasn't too thrilled about playing with the physical therapist but did play with Loretta after the PT left (she left the toys in the room in case Kayla would like to play with them later). Overall, Kayla had a good day. She is improving daily. Kayla's new room number is C4905. The number for the phone that's in the room is 706-721-5428. Please continue praying for Kayla's complete recovery. Kamil
SATURDAY, APRIL 17 @ 10:00 PM Kayla had another eventful day full of therapy and visitors. She continues to eat well and went for a ride in the red wagon again. She liked going outside on the "porch" and looking at the sky, the bushes and flowers. Last night, she slept almost the whole night and we hope she will continue doing that. Thanks again for your prayers. The family appreciates them and we hope that you will continue praying. Kamil
SUNDAY, APRIL 18 @ 9:00 PM Kayla's feeding tube was taken out last night. She only has one IV line now. That should be disconnected soon. Kayla received her last dose of Ativan (a sedative) today and had a bit of a rough day as she is going through some withdrawal. She doesn't get any therapy on Sundays but will have some again tomorrow. She got to go for a "walk" again throughout the hospital and, for a while, outside. Please continue praying for Kayla as she comes off the sedatives and works with the therapists. Also, please remember the parents and big brother as we have now entered the fourth week since Kayla's hospitalization began. Kamil
MONDAY, APRIL 19 @ 3:20 PM Below is an update from Lisa (Kayla's mom): Kayla's night continued to go badly and she ended up having to have two doses of benedryl and one dose of Motrin just to sleep some during the night. She was still extremely agitated and was obviously going through nasty withdrawal from the Ativan. We have great news to report as of now though! Kayla's doing much better than she was yesterday.....but she did have to have a dose of Ativan but only the .5 mg that Paul and I had discussed with Sandy the Physician Assistant, rather than the 2 mg the on call doctor had wanted to give her last night. Paul's mom and I had a pretty long discussion with the pharmacist that was up in PICU and she said that she had written for a taper on that and apparently the neuro doctor (an attending) who took over either didn't know about it or didn't choose to follow her guidelines. Anyway, a taper has been written now so she will continue to get some Ativan for at least 7 or more days until it's down to nothing. Also, our new case manager came in and Paul's mom and I really like her. She is working on what will be needed post hospital visit and was a strong proponent of the place in Atlanta if it's needed. It specializes in Pediatric brain injury rehabilitation. I told her that we will do whatever it takes to get her the best possible care and full recovery possibilities that we can. All that said, she may be on her way to Atlanta eventually. We'll see... Please keep all these med people in your prayers......Kayla received ANOTHER PATIENT'S medication yesterday. Thankfully it was nothing that hurt her....nonetheless it doesn't help our confidence in that aspect of her care very much!
TUESDAY, APRIL 20 @ 9:40 PM Kayla continues to be weaned off her sedatives and is pretty restless as a result. As she gets more coherent, she is also getting more frustrated with the fact that her right side is not working as she wants it to. She continues to eat well and started shrugging her shoulders today (at least the left one). Her IV came out today and is no longer continuously monitored (not even at night). She had an EEG today. She didn't like it, of course, and the family is still waiting on the results. Kayla should be discharged from MCG on Sunday or Monday. From there, she will go to Atlanta where she will be receiving therapy in a facility that specializes in care for children with brain injuries. Please continue praying for Kayla's recovery and for her family. Kamil
WEDNESDAY, APRIL 21 @ 10:10 PM There's not much to report today. In general, Kayla had a good day. She apparently had her best PT session yet. There's still no update on the results of the EEG. Loretta and I were able to play with Kayla for about 10 minutes today (without her wanting to be with Mommy or Daddy). She moved her right leg and arm more today than any other day so far. She figured out how to scoot while she is sitting up and moving her left leg. She seemed to enjoy that. She continues to eat well and is still being weaned off the sedatives. The plan still is to move from Augusta to Atlanta on Sunday or Monday. Please continue praying for Kayla's recovery and for her family. Kamil
THURSDAY, APRIL 22 @ 10:10 PM Here is another short update. Kayla had a rough night and was pretty cranky most of the day. As a result, her PT and speech therapy sessions didn't go well either. Austin, his friend Rebekah and her family went up to visit Kayla this afternoon. She ate her supper outside on the porch. We hope she'll have a better night tonight. Please continue praying. Kamil
FRIDAY, APRIL 23 @ 11:30 PM Here is the latest update from Lisa: Kayla's day was MUCH MUCH better than yesterday. She slept well, had great physical therapy and speech therapy sessions today. She enjoyed playing with Loretta, Austin and me this afternoon and even went down the slide a few times (with help) at the outdoor playground. She still hasn't spoken any words but is making sounds that hopefully will turn into words in the near future. She seems to be getting slightly stronger in the right arm and leg but much more strength and coordination will be needed before she will be able to walk or have true use of those limbs. We still do not know for certain but more likely than not we will be transferred to Children's Healthcare of Atlanta/Scottish Rite for inpatient rehabilitation sometime on Tuesday. She may have to be transported via ambulance but that still has not been ironed out completely as yet (due to hospital liability issues, etc. not due to her health issues). Kayla was also upgraded to a "Soft Mechanical" diet this afternoon instead of the previous pureed requirement. She even ate her peas by herself at dinner, scooping them up with much delight! After her trip to the outdoor playground, we took her to McDonalds where she had her very first french fry since all this began (and a little ice cream, too). She was one happy girl!! Thanks to each and every one of you for your continued thoughts and prayers. She is one lucky little girl to have so many people lifting her up in prayer (and we are, too!) Keep praying!!! God has been good and has heard us all! We still have quite a way to go....but thankfully God can do anything!
SATURDAY, APRIL 24 @ 9:20 PM Kayla had another good day. She had a very good physical therapy session. Austin helped the therapist. Kayla "chased" him with the therapist's hlep. She continues to eat well. Lisa was able to give her a bath today. She didn't much care for the bath but did play with some "water safe" toys that Loretta happened to have with her. She even said hi to me on the phone a couple of times today. Thanks again for your prayers and support. Please continue to pray. We are looking forward to God granting Kayla a full recovery. Kamil
SUNDAY, APRIL 25 @ 10:45 PM Kayla had another good day today! She got a rare Sunday visit from her physical therapist. The PT came in to fit Kayla's right foot and leg with a special tape designed to help hold her foot in a proper walking position. The tape had elastic in it. . .giving Kayla the freedom to move her foot and leg, but yet not to hyper-extend it. The tape started on the bottom of her foot, wrapped around her toes, over the top of her foot, and up to her knee. A few more pieces were added in strategic places (for good measure). Essentially, her foot was at a 90 degree angle to her leg. After fitting Kayla with this special tape, the PT helped to stabilize Kayla while she attempted to walk. The PT held Kayla's torso and body weight, but Kayla did move her right leg in a walking motion. She has a long way to go, but this was an exciting first step. After a special celebratory trip to McDonald's (1st floor of the hospital) for some pancakes, we went on a wagon ride outside. We stopped at the playground and Kayla enjoyed sliding down the slide and playing with Austin. All of the excitement wore her out, as she took a very long nap after that. Kayla's sedatives were lowered again today. . .and she didn't seem to have much of a problem. Then again, we were playing very hard all day (except for the nap). It is so exciting to see the progress that Kayla makes daily. We know that God has a very special plan for this little girl. Please continue to keep her and the whole Jones family in your prayers. Loretta :)
TUESDAY, APRIL 27 @ 10:15 PM Kayla was transfered from Augusta to Atlanta today. Lisa (her mom) drove her. Apparently, the transition was not as smooth as we hoped for. Difficulties began immediately upon arrival when Lisa found out that there is no free parking at the hospital. Then, she went up to the fourth floor where Kayla was already supposed to have been be admitted. From there, she was sent to admitting. When she got to admitting, she was told she needed to go back to the 4th floor because Kayla had already been admitted. Kayla is not happy with the transition either. Having gotten into the car and being on the interstate, she probably thought she was going home and was unpleasantly surprised to find out that she was going to another hospital. We hope that tomorrow will be better! Please pray for that! So...Kayla is now at Children's Healthcare of Atlanta at Scottish Rite, 1001 Johnson Ferry Road NE, Atlanta, Georgia 30342. Her room number is 407, her phone number is 404-785-4407. You can also continue to send her mail at P. O. Box 143, Statesboro, GA 30459. That is also the address for the Kayla Jones Charitable Giving Fund. Please continue checking Kayla's website for the latest updates and to write her messages (kayla.familyjones.org).
WEDNESDAY, APRIL 28 @ 11:15 PM Kayla had a great day today! Surprisingly, she enjoyed meeting her new doctors and therapists. Usually, Kayla has stranger anxiety when meeting new people (and sometimes has it even when seeing people she knows well, but doesn't see often). She did not cry at all. In fact, she waved and smiled to everyone she saw. Kayla has at least 4 scheduled hours of therapy each day--physical, occupational, and speech. During physical therapy today, Kayla walked 50 feet (moved her own legs, but had weight supported by therapists). The speech therapist encouraged Kayla to use her words. Kayla continues to respond verbally to questions asked. Her responses are generally not understandable, but she is making great strides to improve her vocabulary. She is saying hello--sounds like hello without the l's, uh-oh, yeah, mama (we think), want, uh-huh and many other vowel sounds. Overall, Lisa is pleased with the facility. The doctors and therapists are wonderful. They have all gone to great lengths to make Kayla feel welcome and relaxed. This is truly the perfect place for Kayla. Thank the Lord for opening the doors and making this possible. We know Kayla is in His hands. Loretta
THURSDAY, APRIL 29 @ 11:05 PM Things are going fairly well here, but the days are growing long! It will be so nice to finally be home again. Kayla's sessions haven't gone quite as well today, but she is certainly showing improvement each day. She said "bub" for bubbles today and really enjoyed trying to pop them with the speech therapist. She followed a few 2-step "verbal only" commands today as well. Her hand splint has been revised and seems to work much better as of now. Her appetite is still quite good--I suppose it should be as much as they're "working her out". She still is having a great deal of trouble pointing out things from a group when asked. She pointed to the block when asked for a ball.....and pointed to the ball when asked for the truck, etc. I'm not sure what part of the injury that stems from since she seems to comprehend everything you tell her but cannot seem to identify simple object when asked to. Paul and Austin are supposed to be coming tonight....and the case manager is in the process of trying to get our room one of those chairs (like in the PICU) that makes into a bed. I suppose Austin will have to sleep in a sleeping bag. That will save us a little money on lodging, etc. while they are here. Lisa
FRIDAY, APRIL 30 @ 9:45 PM Kayla continues to improve! Not too much new information to report. She continues to add words to her vocabulary. Today, she repeatedly told the speech therapist "NO" and kept closing the book that she was trying to read to Kayla. Always the princess, she has won the hearts of everyone she has come in contact with. She waves and smiles to all of them as they exclaim over her cuteness. Kayla can't get enough. She's enjoyed having her brother and daddy to play with. :) There is still no word from the doctors as to how long Kayla will remain in Atlanta. Initial evaluations from all the therapists indicate one to two weeks. Hopefully we will have a final word early next week. Have a wonderful weekend everyone. Thank you all for your continued prayers, cards, visits, and wonderful support. Loretta :) Don't forget to visit Kayla's website at kayla.familyjones.org. You can write her a message (sign her guestbook) and catch up on any updates you may have missed. There is a weekly summary of Kayla's progress available in PDF on the updates page (this is a great way to give a quick update to those who are not on this daily e-mail list).
SATURDAY, MAY 1 @ 10:45 PM Another quick update. . . Kayla had a good day today. She had many visitors. On weekends, her therapy sessions are much shorter. Only about 1.5 hours (instead of the 4 she usually has). What a miracle she is!! It is so amazing to be able to see improvements every single day. Though she has a long road to travel, we know she will make it. She's got God on her side. . .and lots of prayers from family and friends. Kamil and I will be visiting tomorrow...hopefully we'll have something more to report after our visit. :) Be sure to visit Kayla's website (kayla.familyjones.org). The site has updates, contact information, pictures, and Kayla's Fund information. Feel free to share the link with your family and friends and spread the word about our little miracle girl. :) Loretta :)
SUNDAY, MAY 2 @ 11:00 PM Loretta and I drove up to Alanta today to see Kayla. She has made remarkable progress since we saw her last. She enjoys walking. I had to support her weight, but she moved her legs (much better than the last time I saw her). She actually moves like a prancing horse, picking both of her legs up off the ground pretty high. :) We walked to the play room together and she played with all kinds of toys. We were also there when the occupational therapist came in. She worked with Kayla in the room for about 15 minutes and then took her somewhere else for 15 minutes. She especially seemed to enjoy the kitchen set but also liked sitting in my lap while I played with the pinball machine. She continues to eat well and says "hi" and "uh-oh" a lot. Paul and Austin left at the same time as Loretta and I did. She was sad that we were leaving but didn't cry this time. Thank you for continuing to remember Kayla in your prayers. Please pray for Lisa as well. The two of them have been away from home for 5 weeks now! Kamil
TUESDAY, MAY 4 @ 7:00 PM Here is an update from Lisa: Thought I should drop you a quick update while I can. Kayla's therapies went really well today. She stood "free standing" for 15 seconds which really made Christy her physical therapist very happy (not to mention myself, of course I cried tears of joy!!). Kayla also took three steps without support. These milestones are such large ones for Kayla--especially so soon into her therapy!! Praise GOD!! We go on our first "field trip" tomorrow which will be a "story time" at Barnes and Noble and then McDonalds afterwards for lunch. I myself am very excited to go and I'm sure Kayla will be also. One of the reasons they do these trips is to train the parents on how to unload/reload the equipment that each child may need. (for those of you who don't know, Kayla's in a special wheelchair while she's here--that is something I'm hoping and praying we won't really need for her once she is discharged). It has come in very handy here though. We had three very unexpected visitors today--Uncle Wilson, Aunt Anne and Haybe Hauck who came all the way from Birmingham just to see Miss Kayla and me. Kayla was napping when they initially arrived but did wake up in time to see them for a little while and we walked them part way to the parking lot. Kayla had the typical upset after her nap again today, even with a dose of Tylenol right before naptime. Please keep that in your prayers as it's hard to say what that's from since she can't verbally tell us. I'd better stop for now as Kayla's with me on this computer jaunt and she's none too happy that I've taken this long....... Keep praying! Love to all, Lisa
WEDNESDAY, MAY 5 @ 4:30 PM BIG NEWS!!!!! Kayla is coming home on FRIDAY!!!! :) (What a Mother's Day present for Lisa!) Paul and Lisa met with Kayla's doctor today and it was decided that she can come home on Friday morning. How exciting! Kayla will, of course, need extensive therapy to complete her recovery. The therapy will be done locally--either in-home, in Statesboro, or in Savannah--three times per week. In addition to the news about coming home, Kayla enjoyed an exciting morning out on the town. Once a week, the children get to take a field trip. Today, they went to Barnes & Noble for storytime. Kayla loved it. She waved and said hi/bye to everyone she met. This afternoon, Kayla is having her hearing tested. Results have not yet been determined. In order to do the test properly, Kayla has to hold still. Of course, Kayla isn't cooperating. (What toddler would?) So, they've given her a sedative to relax her and help her sleep. The problem?? She isn't falling asleep. :) She's a fighter. :) So, as soon as she falls asleep and they can do the test. . .we'll have results. (We'll let you know tomorrow.) Please continue to keep Kayla and her family in your prayers. This is a big step (coming home). . .but they've got a long way to go. Loretta :)
FRIDAY, MAY 7 @ 10:00 PM Kayla arrived home safely this evening!! She seemed excited to be home and have her own toys again. She scooted all around the living room--checking out her toy corner. She sat at her play kitchen and made sure all the play food was still there. With help, she walked from the kitchen to the living room. She stood (unassisted) by Austin for 30 seconds. Lisa's "Rejoice" Bible study group (from First Baptist Church) got together to welcome Kayla home. They decorated the house with balloons and had a huge "Welcome Home Kayla" banner made, which they hung on the outside of the house. They also brought dinner and are planning to provide meals for the entire family each Tuesday and Thursday (for the next couple of weeks). What a blessing! The Jones family is planning to attend church tomorrow. They have a lot of thank you's to say. . .and of course, everyone wants to see Kayla. Since they are now home, we will no longer be sending daily updates. As Kayla's recovery progresses, additional updates will be added directly to the website (kayla.familyjones.org). Please continue to keep Kayla and her family in your prayers. Loretta :)
SATURDAY, MAY 15 Here is a weekly update from Lisa: Hello to all! Our first week home was a very good one! It was so very nice to be home for Mothers Day--just another added bonus for our family. Monday began with a session of Kindermusik, which Kayla definitely LOVED! There were only a few things I had to "carry" her around for--otherwise she was doing basically the same things the other children were doing. Honestly, I think she enjoyed that session more than ever! I was very pleased, especially since music and movement is so therapeutic in general. My sweet Rejoice "sisters" brought us food throughout the week, which has really come in handy now that what little free time I seem to have is spent doing therapy exercises with Kayla. My awesome friend Loretta came over also this week and helped me to de-clutter and organize a bit. Hopefully I will get things better organized so that as a family we can spend more time having fun and less time doing the mundane. (what a dream come true that will be!) Kayla had two sessions of Physical Therapy here in Statesboro and everything went fairly well. She still does not want to use her right hand anymore than absolutely necessary, which does concern me. We cannot seem to find a pediatric Occupational Therapist to assist us with that either, so please keep that in your prayers. Hopefully we will be able to line one up early this next week--the sooner the better! We had our initial appointment with "Babies Can't Wait" this week, too, which will eventually assume Kayla's outpatient care for Physical, Occupational and Speech therapies right here in our home. Kayla's first Speech therapy appointment in Statesboro is scheduled for next Friday afternoon and I'm anxious to get things rolling there. As of today, Kayla has successfully walked about 10 feet or so unassisted whatsoever. The walk is still very unnatural and what I would term calculated--she's thinking very hard about each step she takes and seems to make a concerted effort not to hyperextend her right knee (even though she still does hyperextend fairly often). We are SO VERY PROUD of her. Every single day brings progress and we are thankful! Today we spent the day at George L. Smith State Park with our church family. It was great fun and Kayla especially enjoyed the festivities! I think we wore her out with all the fun as she actually fell asleep in her stroller, which very rarely ever happens! Thanks to each and everyone of you for your thoughts, prayers, cards, phone calls, donations, goodies and everything else I've forgotten to mention. We are in total awe of the support Kayla and our family have received from all of you. We are so humbled...and OH SO THANKFUL!!! Please keep praying for Kayla's complete recovery! God is so good and He's carried Kayla this far, He can surely make her completely whole again! Love to all of you, Lisa
MONDAY, JUNE 7, 2004 Today Kayla turned TWO and boy has it been an exciting few days! First there was a family and friends birthday bash on Saturday evening and now today all Kayla's little friends and their siblings (not to mention their mommies and Kayla's God mommies) came over to celebrate! =) Even though she seemed a bit overwhelmed at times, I think she really enjoyed herself. What a precious gift from God to celebrate Kayla's birthday--now more than ever! We are seeing little glimpses of progress in her condition every single day. It seems like such a slow process sometimes, but even subtle changes for the better add up over time. Kayla is walking fairly well, even though her new leg brace still has not come in or been fitted for the final time. Her right hand still shows the most room for improvement and we are hoping and praying that it will regain full ability eventually. Her speech is still very much impaired when you consider just how much she spoke before this presented itself but is slowly coming along. She was able to blow out her candles and literally just regained that skill in the few days before her party. Physical, Occupational and Speech therapies are still going strong and we seem to keep the roads hot around here going from appointment to appointment. We have another meeting with Babies Can't Wait on Wednesday afternoon so it seems that soon we will be able to have Physical and Speech therapy appointments in our home. I think that will be a nice change. Due to the fact that there is a fairly good chance Kayla's condition was genetic, Austin and I must be tested. Austin's pediatric office called today with a June 14th appointment for Austin's procedure. Mine has not been scheduled as yet, but will be very soon. Please pray that God will allow Austin to be unaffected by this condition. I don't know that I could bear going through this again, or knowing that I may have genetically passed this condition to both my children--one is hard enough to accept. Thanks again to each and every one of you for your thoughts and prayers! Keep it up and always know just how much you mean to our family! God bless you!! Love and prayers, Lisa

WEDNESDAY, AUGUST 11, 2004 Hello-- First of all, please let me apologize for not putting together an update any sooner. Things have been so busy with therapies and other commitments that I just haven't taken the time to sit down and write something. Kayla is definitely progressing...and we feel so very thankful! Her speech is slowly redeveloping. I would estimate that she is now about where she was at about 14 months of age in speech. She says maybe 4 or 5 new words each week, which is pretty good really. She still has not said "I LOVE YOU" again but I'm sure she will in time. She used to say that all the time before this journey began! She has Speech therapy twice a week through Babies Can't Wait. She is now walking pretty much whenever and wherever she can! It is still with a definite limp on her right side. She wears an AFO (specially made/casted leg brace) about 3 hours a day for additional support and straightening. It probably helps....but she hates wearing it! She uses her right arm instinctively to balance and now and then she swings it when she's acting very animated. It's quite cute to watch! =) She has recently relearned how to climb up onto the couch and loveseat. She has Physical therapy once a week as of now through Babies Can't Wait. The least progress we've seen so far is with the fine motor skiils in her right hand. She cannot use her fingers or hand functionally as yet--so she cannot do some of the things other 2 year olds can do (like clap her hands, or pick up crayons or small toys, etc). Even so, she is slowly progressing. She will use her left hand to "pick up" her right hand to scoop up larger toys or pillows, etc. This is usually only done when the Occupational therapist or we ask her to--she doesn't think to do it on her own yet but that will come. She has Occupational therapy twice a week in Claxton, which is about 25 minutes away from home. Kayla has become quite the little news item--especially since her condition is quite rare apparently. She was in our local paper with the Emergency room doctor that found the aneurysm and sent her via helicopter to MCG. She was more recently featured in the Claxton paper doing Aquatic therapy (which has been part of her Occupational therapy regimen). We think Austin's probably more than a little jealous.....sibling rivalry is hard enough but in this case it's probably even worse. After a few recent behavioral incidents that have concerned us, we decided to seek a play therapist's advice. Austin went for his first visit this week and I really think that it will be beneficial to us all. Please keep him in your prayers (not to mention the rest of us). Paul and I are celebrating our 14th anniversary today! It's hard to believe that we've been married that long already. Boy what a year this has been......I suppose to make it through everything we've been through and still have a marriage in tact is also quite an accomplishment! We are thankful for that as well, even though I know we both would love a little more time to connect than we've been able to lately. We are leaving Friday afternoon to spend the weekend in St. Marys, GA for our anniversary and are coming back on Sunday evening. Austin and Kayla will be with Grandma and Grandpa Jones and I am sure they'll have a great time! It will be the first time we've been away from Kayla since all this began and the first time away from Austin since Kayla came home from the hospital. I'm a little nervous....but it's time I suppose. Again please let me thank each and everyone for your many thoughts, prayers, donations, gifts, cards and everything else I've forgotten to mention. God has been gracious to us and so have all of you! God bless you richly! Love to all, Lisa (P.S. The picture I've attached is of Kayla and her first real haircut! It was taken on 7-20-2004)


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