Saturday, December 31, 2011
Kayli's New Year's Eve 2011 in the hospital
Monday, December 26, 2011
Kayli and family had a Very Blessed Christmas!!! Kayli spent Christmas Eve with some extended family and had great interaction with them! She was looking back and forth at people in conversation, and was tracking her new portable mobile all the while moving her lips as if saying something to us. Santa gave her a small (portable), soft, musical drum and she loves it! Kayli was a very happy girl for the Christmas Eve and Day Celebrations! Kayli's gift to us...On Christmas Eve, Kayli turned in her crib from her back to her left side! It is amazing to see her purposefully positioning herself! Her seizures seem to be getting better since she has discontinued the Phenobarbital, and her ear infections are almost healed! I found that she also LOVES turkey (I snuck her a taste!) and she sucked on a candy cane till it broke! Her (middle) older brother, Jacob warned me..."Mom, if you keep giving her tastes of our food she will be mad because she will want to eat it and can't..." My response was "well, I guess then she will just have to figure out how to eat again, won't she?!" LOL What a Blessing it was to spend Christmas with all 4 of our kiddos, together in arms reach this year! Thank you God! <3 Blessings for you all, May your travels be safe, Hugs be tight, and Love be contagious! <3
Saturday, December 24, 2011
Paypal account is now verified and set up
Thank you all for your support. We have received many inbox requests to set up the paypal account for donations, and I have FINALLY got around to getting it verified. The paypal account is kwhistler@live.com Please know, the blog is to share Kayli's amazing journey with you! We are very Blessed, as you will see as you read more about our whole Family.
My Christmas wish for all, is that YOU see the Miracles He has given YOU! We wish you a Merry Christmas from Rob, Kelly, Stephen, Jacob, Niko, and Kayli Whistler! <3
My Christmas wish for all, is that YOU see the Miracles He has given YOU! We wish you a Merry Christmas from Rob, Kelly, Stephen, Jacob, Niko, and Kayli Whistler! <3
Friday, December 23, 2011
Dr's say "Impossible", Kayli takes it on as her next Challenge!
I have VERY exciting news that I HAVE to share!!! The dr's have told us that Kayli lost her abilities to suck and swallow after the hypoxic event and that her soft palate had NO functionality or movement anymore. They said there is no known treatment to strengthen a soft palate if ALL tone is lost. Today in speech therapy, Kayli had a suck so strong that she almost pulled the tool off the therapist's finger! The palate has to have tone to close off and build a vaccum to suck....Her soft palate is working!!!!
I kept telling everyone who would listen that I thought Kayli was swallowing! The Dr's thought I was crazy! I also told them her cleft hard palate was closing, they said "that's impossible, palates never close on their own"....it's recently been confirmed, it's closed! ;-)
I hope that one day, the dr's realize that what is "impossible" to them, is simply the next CHALLENGE for Kayli!!!! Amazing!!! ♥
MY next step is to convince a scientist/dr that Kayi's recovery is worth a study! She has so much to teach the dr's! It is rare that someone survives a 32 minute cardiac arrest AND is functioning!!!! Then, add surviving T18 too!!!!
MY next step is to convince a scientist/dr that Kayi's recovery is worth a study! She has so much to teach the dr's! It is rare that someone survives a 32 minute cardiac arrest AND is functioning!!!! Then, add surviving T18 too!!!!
Merry Christmas, and God Bless!!!! <3
Kayli's Mom, Kelly
Thursday, December 22, 2011
Milestones for Christmas!!!
Kayli is now able to reach up and hit her mobile while laying in her crib!!! AND Kayli stood up with her own muscle support without the stander (albeit, leaning against an exercise ball) 3 X's at 2-3 minutes each time! She is doing so much more than the dr's expected with T18, and is single handedly confuting the theory that nobody cannot survive, much less thrive, after an extensive hypoxic event!!! Excellent milestone for Christmas!!! Go Kayli!!!! ♥
Friday, December 16, 2011
Kayli's Care Plans Vs. Risks
I had a care conference meeting with one of Kayli's 3 orthopedics today because within the last 8 weeks, Kayli's left hip has come completely out of her socket (is displaced). Her right hip was already out (likely since birth) so now both are out. We, as her parents, have to decide what care we want to proceed with for Kayli. It is a VERY tough decision to make because there are complications that could ultimately cause her demise if we choose the optimal choice of aggressively invasive surgery.
Normally, when hips are displaced, there is minimal to no pain unless the ball of the hip is pressing against the hip socket. This puts pressure on the nerves, and literally crushes bone against bone. We have been told Kayli's hips are much worse than the worse case scenario for a severely affected CP pediatric patient. Most times, they can wait until the child is 4-6 years old for the most aggressive hip treatment. Kayli has surpassed the need for the most aggressive treatment, and she is only 2 1/2 years old. Kayli's ball and sockets are not touching directly yet, but Kayli is presenting with a lot of pain. Her left leg is turning in, and it is increasingly harder to open her hips/legs to change her diaper. She sometimes wakes up from her sleep crying from discomfort, and is not able to sit ring style with her abnormally placed hips. She is sometimes able to stand in her stander, on her tummy, etc with ease, but it is becoming more of an occasional comfort than regularity of comfort. Kayli has 2 Occupational Therapists and 2 Physical Therapists working with her every week (4 sessions a week) to maintain as well as increase range of motion. In the last couple of months, there is a rapid increase of severity of her hip dysplasia.
Goals for helping Kayli: Decrease/eliminate pain, gain functionality and range of motion, stay one step ahead of her realm of abilities by allowing the opportunities to sit and stand on own comfortably, and protect her from harm and/or irreversible damage in longevity.
The 3 options given to us include:
1. Do nothing new, continue with therapies and "let nature takes it course". This is a non invasive approach, where Kayli's hip dysplasia will continue to progress but pain should not increase in abundance until her hip bones collide. Then an aggressive surgery will be eminent if she survives in longevity but suffers in the days between now and then. Her abilities will be stalled and limited due to the pain, and lack of range of motion because of her muscle tone and hip dysplasia. Kayli's life is not threatened, but her quality of life will continue to decrease as the pain intensifies.
2. A surgical procedure called Hip Abduction. This surgery is minimally invasive with a few days (3) of hospital stay and no casting. The surgery is meant to release her muscles and give Kayli more range of motion. It is uncertain if this will increase, decrease, or have any affect on her current pain level. The hope would be that the affect of this surgery may last a couple of years, IF Kayli is involved in vigorous daily therapies, and sits with a cushion between her legs at all times. It is thought to be a painful daily life, as the muscles continue to be "conditioned" against their natural tone on a daily basis. There is a risk that her muscle tone will go in the opposite direction, and she will lose all muscle tone. It is essentially a "band aid approach" with minimal if any relief from pain. The only pro is that there could be more range of motion than she currently has, if the post surgical care is aggressively maintained. If Kayli falls ill, her muscles will not receive the care they need and her range of motion will fault back to pre surgery conditions or have little to no muscle tone at all.
3. An aggressive surgical approach, including an accumulation of 8 surgeries (4 on each hip) accomplished bilaterally in a total of 2 days. The first surgery will be on one hip, and if all goes well it will take 4-6 hours, with a goal of 4 weeks in a Spica cast (under rib cage to toes). Then 3-6 months later, the second surgery will duplicate the original hip surgery and Kayli will minimally spend another 4 weeks in another Spica cast. The hospital stay is lengthy (a week?) for each surgery. The surgeries include: A) Femoral Osteotomy~to shorten the femur and redirect it into the hip cup/socket. B) Acetabuloplasty~ to deepen the hip cup/socket. C) Capsulorrhaphy~ to tighten the hip capsule. D) Hip Abductor~ to release muscles.
This 3rd approach has been related to us to be the "optimal treatment" for Kayli, but the risks of the "optimal treatment" may outweigh the goals. Concerns for Kayli with the most aggressive approach include major blood loss (a common risk for this surgery). Kayli also has a history of needing blood transfusions after surgeries as her norm, so this is a critical consideration seeing the "normal" risks include an already profound amount of blood loss. There is a surgical consideration that the meds she is on can also cause an increased risk of blood loss or replacement. Once the surgery/treatment has been started, the other steps to the surgery HAS to be finished. In other words, they cannot start the first surgery (A) and end there. They would have to continue with surgeries B,C, and D to get the corrective outcome. If Kayli has a significant blood loss, they would still be forced to continue the surgeries and/or go back in several other times, putting her at higher risks for infection, blood loss, etc.
I was given two impressions today, one of medical opinion, and another of personal opinion. The medical opinion was to give Kayli the 3rd option, and without extenuating circumstances, the reccurance rate is the highest risk (having to repeat the surgery later in life). If Kayli's specialists feel the risk factors are within appropriate surgical release range, this would be the optimal treatment plan. The personal opinion was for my husband and I to think about Kayli's longevity and decide if the treatment to reach all of our goals for Kayli's outcome, outweighs the risk of complications that could realistically lead to Kayli's death.
We will be thinking long and hard about what is best for Kayli. We have always taken in all medical information, then pulled out the impertinent information relating to Kayli, and then tweaked the discussion to fit Kayli's goals and needs in order to come up with the best plan of care for our daughter. We are reluctant to rush into giving her the needed optimal surgery at the cost of loosing Kayli's life to the realistic risks of a major, non lifesaving, surgery.
I have a call in to the neurologist, suggesting he evaluate the request I have to give Kayli a CP treatment plan to help her with muscle spasms caused by her high/tight muscle tone. Her muscle tone is likely to be causing the alarmingly increasing unaligned bone growth in both her hips, as well as, her spine.
We hope to make the best choice for Kayli's growth and approaching abilities, while protecting her life. We are afraid we will regret our decision if she passes away at the surgeons hands with our choice to give her an aggressively invasive treatment vs. providing her with a low quality of life (in pain).
Prayers for Guidance is always welcomed and appreciated. <3 Thank you! <3
Normally, when hips are displaced, there is minimal to no pain unless the ball of the hip is pressing against the hip socket. This puts pressure on the nerves, and literally crushes bone against bone. We have been told Kayli's hips are much worse than the worse case scenario for a severely affected CP pediatric patient. Most times, they can wait until the child is 4-6 years old for the most aggressive hip treatment. Kayli has surpassed the need for the most aggressive treatment, and she is only 2 1/2 years old. Kayli's ball and sockets are not touching directly yet, but Kayli is presenting with a lot of pain. Her left leg is turning in, and it is increasingly harder to open her hips/legs to change her diaper. She sometimes wakes up from her sleep crying from discomfort, and is not able to sit ring style with her abnormally placed hips. She is sometimes able to stand in her stander, on her tummy, etc with ease, but it is becoming more of an occasional comfort than regularity of comfort. Kayli has 2 Occupational Therapists and 2 Physical Therapists working with her every week (4 sessions a week) to maintain as well as increase range of motion. In the last couple of months, there is a rapid increase of severity of her hip dysplasia.
Goals for helping Kayli: Decrease/eliminate pain, gain functionality and range of motion, stay one step ahead of her realm of abilities by allowing the opportunities to sit and stand on own comfortably, and protect her from harm and/or irreversible damage in longevity.
The 3 options given to us include:
1. Do nothing new, continue with therapies and "let nature takes it course". This is a non invasive approach, where Kayli's hip dysplasia will continue to progress but pain should not increase in abundance until her hip bones collide. Then an aggressive surgery will be eminent if she survives in longevity but suffers in the days between now and then. Her abilities will be stalled and limited due to the pain, and lack of range of motion because of her muscle tone and hip dysplasia. Kayli's life is not threatened, but her quality of life will continue to decrease as the pain intensifies.
2. A surgical procedure called Hip Abduction. This surgery is minimally invasive with a few days (3) of hospital stay and no casting. The surgery is meant to release her muscles and give Kayli more range of motion. It is uncertain if this will increase, decrease, or have any affect on her current pain level. The hope would be that the affect of this surgery may last a couple of years, IF Kayli is involved in vigorous daily therapies, and sits with a cushion between her legs at all times. It is thought to be a painful daily life, as the muscles continue to be "conditioned" against their natural tone on a daily basis. There is a risk that her muscle tone will go in the opposite direction, and she will lose all muscle tone. It is essentially a "band aid approach" with minimal if any relief from pain. The only pro is that there could be more range of motion than she currently has, if the post surgical care is aggressively maintained. If Kayli falls ill, her muscles will not receive the care they need and her range of motion will fault back to pre surgery conditions or have little to no muscle tone at all.
3. An aggressive surgical approach, including an accumulation of 8 surgeries (4 on each hip) accomplished bilaterally in a total of 2 days. The first surgery will be on one hip, and if all goes well it will take 4-6 hours, with a goal of 4 weeks in a Spica cast (under rib cage to toes). Then 3-6 months later, the second surgery will duplicate the original hip surgery and Kayli will minimally spend another 4 weeks in another Spica cast. The hospital stay is lengthy (a week?) for each surgery. The surgeries include: A) Femoral Osteotomy~to shorten the femur and redirect it into the hip cup/socket. B) Acetabuloplasty~ to deepen the hip cup/socket. C) Capsulorrhaphy~ to tighten the hip capsule. D) Hip Abductor~ to release muscles.
This 3rd approach has been related to us to be the "optimal treatment" for Kayli, but the risks of the "optimal treatment" may outweigh the goals. Concerns for Kayli with the most aggressive approach include major blood loss (a common risk for this surgery). Kayli also has a history of needing blood transfusions after surgeries as her norm, so this is a critical consideration seeing the "normal" risks include an already profound amount of blood loss. There is a surgical consideration that the meds she is on can also cause an increased risk of blood loss or replacement. Once the surgery/treatment has been started, the other steps to the surgery HAS to be finished. In other words, they cannot start the first surgery (A) and end there. They would have to continue with surgeries B,C, and D to get the corrective outcome. If Kayli has a significant blood loss, they would still be forced to continue the surgeries and/or go back in several other times, putting her at higher risks for infection, blood loss, etc.
I was given two impressions today, one of medical opinion, and another of personal opinion. The medical opinion was to give Kayli the 3rd option, and without extenuating circumstances, the reccurance rate is the highest risk (having to repeat the surgery later in life). If Kayli's specialists feel the risk factors are within appropriate surgical release range, this would be the optimal treatment plan. The personal opinion was for my husband and I to think about Kayli's longevity and decide if the treatment to reach all of our goals for Kayli's outcome, outweighs the risk of complications that could realistically lead to Kayli's death.
We will be thinking long and hard about what is best for Kayli. We have always taken in all medical information, then pulled out the impertinent information relating to Kayli, and then tweaked the discussion to fit Kayli's goals and needs in order to come up with the best plan of care for our daughter. We are reluctant to rush into giving her the needed optimal surgery at the cost of loosing Kayli's life to the realistic risks of a major, non lifesaving, surgery.
I have a call in to the neurologist, suggesting he evaluate the request I have to give Kayli a CP treatment plan to help her with muscle spasms caused by her high/tight muscle tone. Her muscle tone is likely to be causing the alarmingly increasing unaligned bone growth in both her hips, as well as, her spine.
We hope to make the best choice for Kayli's growth and approaching abilities, while protecting her life. We are afraid we will regret our decision if she passes away at the surgeons hands with our choice to give her an aggressively invasive treatment vs. providing her with a low quality of life (in pain).
Prayers for Guidance is always welcomed and appreciated. <3 Thank you! <3
Wednesday, December 7, 2011
Monday, December 5, 2011
Our Family of Special Needs, a Special Love
We are a family of 6, and we have been Blessed to have 4 children with special needs! Yes, they are all ours biologically, and no they do not all have the same diagnosis'.
Our oldest has Degenerative Disc Disease and has had 5 spine surgeries since he first broke his back (during a baseball game) when he was 14. He had MRSA, a staph infection resistant to antibiotics, in his spine and is allergic to the two antibiotics proven to fight MRSA....We almost lost him. God took control.
Our middle son has Autism (high functioning), ADHD (severe), Sensory Integration Disorder (doesn't feel pain), and EOE (allergic esophagitis). There is no cure, nor treatment for the EOE. It is enzymes deteriating his esophagus and causing scarring (high risk of cancer).
Our youngest son has an inoperable brain tumor in 2 parts of his brain stem (pons and medulla) and deep in his Cerebellum. He was diagnosed with Gangliaglioma (cancer) by CHOP, the Dean at Loyola, and many other reputable hospitals. He was too young for radiation, and it was inoperable (shape, location) so we put a port in and waited for it to grow more aggressively so we could treat ALL the cancer cells (it was thought to be our only hope!) The cancer grew slowly for about 6 months...then stopped! God has given us another miracle! The tumor is still there, but remains stable/not growing. Inexplicable in the medical world, but a miracle in our world!
You have met Kayli in the video. You can see her many steps to recovery and grace in her videos on You Tube...under the channel kellywhistler1. Thank you for the thoughts and Prayers! God Bless!
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