The Butterfly Effect

Some may wonder why I chose the title of this blog as Butterfly Effect? Actually, AJ picked this as his domain name just before the accident. You see, AJ had the rest of his life ahead of him. Typical of many young kids, he made a few bad choices in life, hadn't finished school, was diagnosed with a learning disability, and living life on life's terms was not easy for him, but as with many young men moving on to adulthood, he also realized he needed to change. He went back to school, was working on his GED and only needed his reading score to pass. He was working part-time going to school and wanted to have a family someday. He was looking forward to a good decent life and he coined the name Butterfly Effect because he was transforming becoming a man. Now this transformation has taken on a new meaning, fighting for his life, but the roots of its definition are still within my son. 

Besides transformation, there is another story about the Butterfly Effect during metamorphosis about the abrupt change in cell growth, body structure. and behavior. The caterpillar that once roamed on the ground, develops wings and flies. It is during this phase of metamorphosis and struggle to get out of its cocoon, will the butterfly's wings fill with fluid and develop its strength to fly. The butterfly cannot be helped to get out of the cocoon during its struggle, otherwise its wings will not fill with fluid or develop the strength to fly.  

 "Transforming states of consciousness from one dimension to another..."

The principles of the Chaos theory is to the Butterfly Effect; unpredictable. It teaches to expect the unexpected. Things that are impossible to predict or control, like our brain states. Small changes in the initial condition lead to drastic changes in the results. We cannot hope to predict the ultimate fate of a complex system.  This effect grants the power to cause a hurricane in China to a butterfly flapping its wings in New Mexico.  It may take a very long time, but the connection is real.

I know of AJ's will and determination. I can see responses, progress and emotions in my son that doctors cannot. When AJ was asked to open his eyes, he did, this was not just a reflex. When asked, he raised his finger when in pain, this was not a reflex…..the list goes on. It is these small little occurrences that I have seen that tell me my son is trying to communicate. He is struggling to emerge, transforming states from his subconscious, a  dimension of near death to a new state of consciousness. These little responses soon have become bigger responses and he is still trying to communicate…. it is  impossible to predict or control, but the connection is very real. It has taught me to expect the unexpected.

The icon of the butterfly with its wings taped represents my son. He is stuck, locked-in, his wings have spread, his mind state has changed. I want to help him, but I am helpless, it is up to him. He has the strength to pull himself free. I pray everyday for continued strength and the will to thrive.

Guest Book for Ronald White - Online Guest Book by The Arizona Republic and Legacy.com.

Guest Book for Ronald White - Online Guest Book by The Arizona Republic and Legacy.com.

2013 Jan-June Still Making Progress

1/17/13

This year our goal is to get AJ up on his feet and give him an opportunity to walk. He is not paralyzed, but lacks any trunk control to hold himself up. His spasticity: which is also referred to as an unusual "tightness", stiffness, and/or "pull" of muscles, has become worse since his surgery last year. His feet are not flat and will not bend at the ankle, they are stiff. If his feet are not treated aggressively and quickly, his feet will keep dropping  until his toes will be permanently pointed like a ballerina. We are introduced to the procedure of serial casting.

RECAP

He laid flat from Aug 2011 until January 2012 In January of 2012 we got him up on his feet 3 times at SWAN neuro rehab. The first time he stood, he passed out, so we got him up again as soon as his blood pressure stabilized. Then, in March of 2012 he was hospitalized and had to lay flat for 3 months. In May he slowly started to get up for a few hours a day to sit in a Geri chair while we pointed him toward the TV. We were ready to continue therapy at SWAN, but decided it would be better to start his therapy at Hacienda skilled nursing facility....but it was slow going at first. Trying to keep a therapist at the facility, and also AJ's limitations are challenging......especially now that he is eating and gaining weight. He is a full assist to transfer.

His declining drop foot and tight muscles are keeping him from progressing in his therapy.....we need more aggressive help and an acute inpatient rehab is not a possibility because the insurance will not allow him to go to Barrows inpatient acute rehab without a firm discharge plan to a more cost efficient place other than a skilled nursing home. In order for him to get the therapy he needs he has to be released to my house or a group home. Neither is a reality. I work and live in another state and his needs are to many for a group home. It is a catch 22, If he is given the opportunity to see what he can do, like help transfer, get up on his feet or be able to turn himself, this opportunity can only be possible with therapy in a more aggressive setting, as in an acute therapy setting, but the insurance will not allow this opportunity to receive intense therapy, to see what he can do. 

12/2012 I received a call from one of AJ's prior therapists, at SWAN,  asking how he was doing? When Shannon seen him last, he could hardly hold up his head. I explained to her how far he has come and that she would not recognize him. His weight has gone from 80lbs to 155lbs. She set up an appointment for an assessment. We waited until the first of the year (2013) so that I could be a part of his treatment. The end of the year is busy at my job, so I stay in New Mexico to work the holidays so I can build up my finances to get me through the next 6 months. It is going to be a good year....but I am sure it will not be without its frustrations.

TREATMENT PLAN

Finally I am back with therapist at SWAN who believe. The owner of SWAN Neuro Outpatient Rehab, Kay Wing, suggests a series of serial casting's on his feet. The idea is to stretch his feet and place cast on them for a week at a time to correct the drop foot that has developed since his last surgery in March 2012.

 SERIAL CASTING

12/2012 developing drop foot

1/17/13 first measurements

 The first measurements of his developing drop foot is a -50degree angle on his left leg (his good leg).  The scar and little muscle on his right leg are from the loss of muscle tissue and the faciotomy.

1/17/13 A series of 6 castings

Kim Gatewood is truly an angel. She is a PT with St. Joseph and specializes in helping 

people walk, welding her saw after work hours to cast crippled feet, offering a chance for hope.

 

Chillin

When you ask Aj what happened to his feet, and why he has casts on them, he moves his lips to tell us, "There broken."

2/23/13 Removable casts

2/23/13 flat feet!

2/23/13 AJ's feet are flat with no eversion in his ankles. He is standing on a full tilt table steady on his feet. He developed athletes feet from the casts, so he has to give his feet a break from the casting until the fungus clears.

4/5/13 developed blisters

There has been many complications with his tender feet. Athletes feet, blisters, problems getting the correct fit with special boots (AFO's), and also getting him on a regular physical therapy routine. He hasn't stood on his feet with shoes on for almost two years. 

HOPE PROGRAM

Once  his feet were neutral from the castings, we began outside therapy with SWAN outpatient neurological rehab in a special HOPE program. Medicaid only allows 15 visits per year for rehabilitation. This is a ridiculous number that is determined for everyone, when each patient needs to be evaluated individually to meet their therapeutic needs.

 The HOPE program is within my budget, so that I can help supplement AJ's needs outside Medicaid's responsibility. The Hope program uses Tech's under the owner's instruction....perfect. It is essential for AJ's recovery that his rehabilitation continue despite Medicaids limitations. It only makes sense to continue rehabilitation to help AJ claim more independence. With more independence his health-care will be more cost efficient, he will have less hospital visits, and hopefully someday be able to go home....It seems to me, that Medicaid wants to keep him dependent, giving him only custodial limited care.  All I know, is that if I don't try, we may never know AJ's abilities and potential, so we must try!

Kay Wing, the owner of SWAN set out new goals for AJ......finally people who "believe." The process of rehabilitation for a brain injured person, as in AJ's case, is slow. It takes a special kind of person to choose to go into neuro rehab.....it is challenging, but it is also rewarding! First a series of 6 castings, then physical therapy at SWAN twice a week working with the skilled nursing facilities PT and OT department at Hacienda. Kay stated that she can see AJ as a functional walker. This is a amiable statement and music to my ears.

I refuse to hear any negativity concerning my sons progress. Many cannot see what I can see....I am his mom! His progress is sometimes so minute, to passerby's or those who work with him everyday. They cannot see what I see, they cannot read the lips, or fill the nods of his heads with a sentence, or know what drives this boy....I know, and I can see the progress, and so can Kay and others at SWAN.

3/22/13 parallell bars

5/10/13 Arm control

5/10/13 Hands and Knees

5/10/13 Feeling some independence standing

5/10/13 Strengthening his Core

6/14/13 Attempting to stand for the first time on his own. 

It has been about 3 months. It has required constant repitition to get AJ up on his feet, strengthening his core, working on his balance, stretching his shortened muscles for more flexibility, reaching exercises, laying on his belly to lengthen the muscles in his abnomen, getting him up on his hands and knees and now......for the first time, he tells his therapist Ricky with his voice, "I want to stand now!" AJ shows his determination and he wants to stand. In a 1/4 squat, AJ attempts to push with his legs to stand upright! This is progress! We cannot quit now. 

These past few months have not been without its set-backs. Athletes feet, blisters, numerous fittings to get his AFO's correct, then a seizure, which landed him back into the hospital...but AJ keeps getting back up with even more determination. Now, this is his therapist, Ricky's, last day....I wanted to cry. It is not easy finding someone with the patience, strength, and compassion that Ricky has had to help connect with AJ and help get him up on his feet. If you are readig this Ricky, a big thank you for believing and giving us hope!

We have been through many therapists and I try not to take it to personally.

AJ is going in for surgery on June 20th to reverse his colostomy. This is another big step to get him put back together and find some normalcy for him. Before the surgery, I wanted to get his feet back to neutral, and get some core strength back, which he had lost from the surgery last year to sew up the pressure sore. The colostomy reversal, will be another physical set-back, but I still see this as progress moving forward for more independence. His therapist at Hacienda agrees that the good news is, we are still moving forward. With another birthday coming up, AJ will be 25 again. Time has stopped for AJ and he still shakes his head at the loss of years. Ricky believes that cognition will improve with physical therapy. I have seen this first hand. Since our visits at SWAN over the past few months, today, AJ yelled across the room to Kay Wing at SWAN and said, "Hey, Kay." She turned around and could not believe it was AJ speaking. She stated, "She remembers when he was just whispering." Then he said to her, "Happy Birthday."AJ has always been a charmer!

Book Sales Raising funds for AJ's therapy. 

Butterfly Effect

San Francisco Marathon June 16, 2013

August 11, 2012 / Year One

              2012 JUNE-DECEMBER

It is AJ's love for life that will pull him through these dark days and nights. I miss his voice...he still cannot talk, but his middle finger still works with a smile. Always smiling, laughing, running jumping and tumbling down the ski slope. It will be his strength, your prayers and God that will get him back up on his feet again!

              BIRTHDAY 25 AGAIN

THERAPY

EATING

THANKSGIVING AT GRANDMAS

CHRISTMAS/SEIZURE 12/22/12

Another Set Back 2012 Jan-June

              February 2012

2/2/12 Therapy at SWAN

AJ is looking like Brad Pitt. He is not on his way to the red carpet, but he is on his way to therapy at SWAN's outpatient therapy. He is being transported on a gurney. SWAN is a very active place filled with a lot of hope. They did not know quite how to handle AJ showing up in a gurney. He didn't have a wheelchair yet. His right arm is contracted up with a closed fist and his left arm has no movement. This is so unfortunate for him as he is left handed.  We have great hopes for him as the therapy is beginning.

AJ has a pressure sore from the fall on his coccyx (tailbone) that is not healing properly. Probably due to a lack of good nutrition. He is still on a feeding tube. At least at Hacienda he is now get the cc's of food through his tube to help him gain weight. He has lost so much weight and his bones protrude. A wound vac has been applied to his pressure sore to help keep it clean. The wound is open to the bone, nerves and muscle. If it doesn't heal he will need surgery, so we are trying to get in as much therapy as possible to stretch his contracted, shorten muscles by guiding movements to activate his brain and help him connect. This therapy will help him to remember how to move and develop new pathways as the brain is rewiring. Right now his only movement is his head and reflexes opening his mouth and biting down on anything that gets close to his mouth.

2/24/12 Valentines Day

He is standing on the tilt table at Hacienda underneath the Valentine balloon. Will you be my valentine AJ? When he was 14 he gave me candy and flowers for Valentines. It was such a special day. You can be valentine any day AJ, we are going to have many valentines a head of us.

               WHEELCHAIR

2/24/13

AJ has some new wheels. I can tell that he knows he is in a wheelchair and is not to happy about it. He cannot talk, but his eyes and face say everything. He knows he is in a different place with some very ill people. When he sat in the day-room for the first time at Hacienda, he looked around and about came up out of his chair, wanting to say something, but nothing would come out of his mouth. His head bobbing all around,  I could see in his eyes and actions what he was saying the only way he could, "What is going on, where am I?"

                     INDEPENDENCE

3/9/12 Visiting Grandpa

Now that we have the wheelchair we can go outside and visit. AJ hasn't seen much sunshine. Grandpa is trying on AJ's new sunshades, AJ thinks this is funny. 


       PRESSURE SORE

3/22/12 Pressure sore on the coccyx

 The pressure sore is from the initial fall. A patent leather belt applied pressure on his tail-bone. The skin has been continually breaking down, from a lack of good nutrition, and from sliding him on the bed and sheets. He has to be turned and repositioned every 2 hours to keep his blood and bowels circulating. The sore is not healing  because of  where it is located on his tail-bone. This puts him at high risk of a blood infection. The wound is so deep, I can see nerves, muscle, and bone. It is a catch 22, the sore is keeping him from continuing physical therapy, and  the surgery will also keep him from physical therapy. He will have to lay flat in bed with only bed baths for at least 6 weeks. I am really concerned about this lack of movement. It is imperative that he activates his trunk, hip and leg area to connect with his brain to build new neuro pathways to help him initiate movement. I fear that he will develop a dependency on his caregivers.

     COLOSTOMY

3/23/12 X marks the spot

I am not to happy about him getting a colostomy. This will lay him up and weaken his already weak abdomen. The doctor will be sewing up the pressure sore, a procedure called, a skin flap. The doctor wants to protect his work, so he insists on the colostomy, which is essential for healing. They replaced his feeding tube also. His hand is still contracted. The dots on his stomach are where they were going to pull out his intestines for placement of the stoma, I asked if they could go lower. We compromised where the "X" marks the spot. They said it can be reversed, but they also said that it would improve the quality of his life. I am not quite sure about that one. He is not paralyzed and it is to soon to tell what progress he will be making.

3/23/13 Awaiting surgery

He is looking so cute in his blue bonnet awaiting surgery to sew up the pressure sore, get a  colostomy, and replace the feeding tube.  The doctor said he is to lay flat in a special bed for at least 6 weeks, so as not to rupture the stitches.

                                                     THUNDERBIRD HOSPITAL

3/24/12 after surgery 

Recuperating after the surgery as his sister lays by his side.

3/25/12 signs of life

As AJ awakens from the surgery, reflections of crosses are surrounding him through this image. The unseen and forever reassuring signs of hope! I see them everywhere and they remind me that he is in God's hands.  Thank you Lord!

4/6/12 stitches from the skin flap

 The surgery went well. His bowels are flowing through the stoma. AJ's reaction to the stoma as he looked down on it, was that he thought he was dying. I reassured him that this wasn't so. No telling what he was thinking to see his guts hanging out from his stomach.

4/25/12 skin flap broke open

AJ is to lay flat for up to 6 weeks. From a lack of good nutrition, he is having problems healing. The 6 weeks recovery process turned into 3 months.

PROM NIGHT AT LOS HACIENDA

5/2012? Prom night

 AJ was nominated king, but couldn't attend because he is to lay flat in bed and is still recuperating from the surgery. We decided to let him get dressed up for the occasion anyway while he stayed in bed.

His sister is getting him ready for the prom. He is swimming in his pants. He has lost so much weight and has no leg or arm movement, only his head, eyes and mouth.

4/19/12
Prom night, quite an event. they got tuxedos for all the residents. AJ didn't get a tux because he was in the hospital. I still got him dressed in his black pants and shirt. He smiled when he seen his clothes. I attended the prom dressed up. I need to put into words what I experienced:

 The family's that I hadn't seen or met showed up for the event. I could tell they were familiar with the Prom. I can only imagine that they have been through this much longer than myself and have come to accept the inevitable affects on their loved ones. Sometimes I reflect and wonder why I am here with all these families. The Dr and his family showed up, a beautiful family and they are all so tiny. The doctor was in charge of the bubble machine and it was so cute to see his little boy with all the bubbles attached to his head because he had some kind of gel in his hair that attracted the bubbles. I wish I had my camera, but I don't think I can break out with the granddaddy camera. This is sensitive territory with all the kids with defects having fun. Some were oblivious as to what was happening, others moved what limbs they could to the music. The kitchen guy who has down syndrome broke out with some moves and was gyrating to Michael Jackson really coming out of himself. I think of myself and how it takes everything I have to come out of myself, and these kids have no fear or intimidation to perform. This is there home.

There was a beautiful cake made my the human resource lady and her mom. The cake was like 5 tiers, a full buffet, and a DJ. It reminded me of D-St. I hung out with AJ in his room.  He didn't win the title of King. I couldn't help but wonder how AJ would take this event. He is becoming more aware of his surroundings, and I know the wheelchair bothers him. Katie, one of my favorite nurses showed up looking hot. I met Rose Bennet and her son, Ethan. I got a chance to talk to her about The Hyperbaric Chamber. She said her son, a victim of a near drowning, went into the chamber as soon as he could. Ethan was in and out of the hospital for over the next year and he couldn't go back into the chamber until after a year. she said it is best to do it ASAP and she gives the chamber credit for her son being able to track now and being somewhat responsive. She said it is expensive and told me of a non profit, I assume it is her non profit, that is just getting off the ground and can help. It is 40 visits in the chamber at 200 a piece, which can get really expensive. She said he could be transported right from Hacienda. She said the non profit was Breath for Life. I looked it up but couldn't find it. I will ask again this summer. Right now I have to concentrate on finishing up my school work and besides Aj is still laid up in bed as his wounds heal.

4/12/12
Laughing is going to help strengthen his vocal chords. So, it is my job to make him laugh. Today, while he was laughing his vocal chords came together and he made a sound!

4/19/12 visit with Teresa, his other mom.

4/19/12 Happy to have visitors

5/14/12 Able to get up 3x's a day for an hour

5/10/12 Sleepy

5/25/12 Rock On!

5/25/12 Hanging out with his sister listening to Lil Wayne

5/25/12 Still in bed

AJ has such a good attitude. It is this attitude that will get him through this. He is becoming dependent on his caregivers. This is becoming a learned condition from so many having to care for his dependent needs. We pass the time with visits, peeks in the mirror, listening to music, watching TV, flash cards, with new hand and mouth movements. He can move his lips, and I can read his lips. He said I am f.... crazy!

5/26/12
Still on tube feeding 105cc and 126lbs.


5/30/12
Karen, another one of my favorite nurses, a true angel got the Speech therapist to start him on a mechanical diet. AJ is eating! His first meal was a hamburger and zuchinni. He choked on the zuchinni, probably because he didn't like it! This is going to make all the differene in the world in the healing process of the pressure sore. Some healthy good nutrition for his skin, mind, and weight.

Family Fills in the Gaps

2/11/12 Pledge of Allegiance....one night his sister opened his constricted hand and placed it on his chest and jokingly said the pledge of allegiance, only to see AJ reciting it along with his sister. He is showing signs of cognition.

2/11/12 Pledge of Alligence

3/12/12 Eating....despite the failed barium swallow test, we continue the tongue exercises with ice cream. We sneak off to the Angel House, which is a one bedroom apt reserved for people like me who come from out of town to visit their loved ones. In the Angel House we have privacy and room to spend special time together; like in a regular home environment. His grandpa cuts his hair and I feed him ice cream, but not the crust. He wants the entire ice cream, but first we have to do tongue exercises to strengthen his throat muscles to get a stronger swallow.

3/12/12 tongue exercises to strengthen his swallow

Watching movies.....He loves a funny movie. We can catch him using his vocal chords when he laughs....so it is our job to make him laugh to help strengthen his vocal chords. We all gather around in his room in geri chairs and put on a funny movie.

movie night with his sisters

3/2/12 Therapy in bed...AJ's right arm extends up and his left arm extends down with limited movement in his left arm which is unfortunate because he is left handed. The idea behind allowing him to hold both his right and left hand is to make a connection with his brain to move both arms and hands up and relax to go down.

3/16/12 Shopping at Ross....AJ loved shopping at Ross before the accident, so I wanted to give him some kind of normalcy in his life....so we went shopping at Ross. I told him I know you can pick out your clothes, blink, smile, point with your head, whatever, and he did. He picked out his own clothes.

First, I held up a collard shirt that I was sure was not his style and he smiled. I said, "Your smiling, do you like this shirt and want it?" he stared at the shirt for a while and his head went from side to side and then lipped the word "no."  I then held up a black shirt with skeletons on it, and asked him if he wanted this shirt, to test him to see if he really understood the concept of picking out his own shirt. He hesitated and seemed embarrassed to let me know that he wanted this shirt and that he liked it...he paused, then his head went from side to side and he lipped the word "yes"....it was on, shopping had commenced.....then his friend, who is like a sister to him showed up with her kids. He hadn't met the baby yet, but he recognized them....and he cried, really cried for the first time. It was a wonderful day out shopping with old friends

3/16/12 transported to Ross

Met up with his friends at Ross

It was a good day!

Therapy 1/05/2012

1/4/12 

AJ's first day at an outpatient rehab, SWAN. Six- 3hr sessions. today was an assessment. He did really well. Speech; he cooperated with tongue movement and head nods toward objects he recognizes. Our homework is to work on oo, pucker, and ee and sticking his tongue out more. OT sat him up. He has more head strength and more range of motion when sitting up. He showed some hand strength. PT just contracted and needs boots will send assessment to Hacienda so we can all get on the same page. Continue with range of motion and boots 6hr on daily. sores on feet. leg and coccyx are better, Cocccyx is still bad and drop foot is developing, his hands are a little more relaxed. Still has good attitude and trying hard.

I played a voice mail where I had recorded of his voice. He recognized his voice, listened, then smiled. He also recognizes Eminem, and gets a kick out of Crystal, his sister. Crystal is his speech therapist, I am his PT, and his Grandma is his OT.

Dr. Thompson said that, "The ability for AJ to see straight, track, and process information requires a very complicated process within the brain, and takes 3 nerves in the brain to do accomplish this and AJ has shown that he can do this. Now we just have to work his mid-brain and make new paths.

January 5, 2012

First visit with the speech therapist at SWAN.

 I was amazed that he was attempting to follow her commands by pointing with his head to the correct category. This was the first time that I realized that he understands even more and is trying to communicate. With the way the health care (Medicaid)  is set up, he is only allowed 15 visits per year with a therapist. These visits are to be split up between speech, physical therapy, and occupational therapy. I cannot believe that any insurance company can put a time-line on a persons recovery.

OT



PT

1/27/12 He stands for the first time

January 2012 The therapy is working. This idea of standing him is to make a connection with his brain and his legs to activate movement. He hasn't stood on them since the accident, lying completely flat with limited range of motion due to his injury on the left leg. Every time a therapist tried to move his leg, it would start bleeding. His leg is healed and it is time to stand. He is full assist in getting up, and has no balance...but he is up! The first time he stood he passed out, but Kay got him right back up once his blood pressure was stabilized.

In no time after standing him, his leg began to move when I asked him to move it.
 It looks like a jerky reflex, but we will take anything at this time.

 

 1/28/12 His right leg moves for the first time

1/26/12 Sits in a wheelchair for the first time

1/5/12 He can barely hold up his head

2/2/12 AJ stands with assistance and tries to bite his therapist on the way up :)

3/1/12 With his physical therapist

Insurance allowed him 15 therapy visits;occupational, physical and speech in an outpatient treatment center called SWAN. They are affiliated with Barrows Neurological Inst. and treat damaged motor skills through Neuroplacisity.

"Neuroplacisity is the ability to change its structure and function in response to experience. Even when the brain suffers a trauma late in life, it can rezone itself. If a stroke knocks out the motor cortex that moves the right arm or in AJ's case his left arm, a new technique called constraint-induced movement therapy can coax next-door regions to take over the function of the damaged area. The brain can be rewired."

His leg wounds from the faciotomy are healed. He has lost so much weight from the pancreatitis problem and lost a lot of tone in his muscle. Also, he displays rigidity and atrophy in his muscles. I had to get him up right away to get some of his strength and tone back despite the wound vac, weakness, and loss of weight. He has been carrying  around the wound vac during therapy. The wound vac is to treat the pressure sore on his tail bone which is not healing.

 

2/9/12 Barium swallow test

He can barely hold his head up for the Barium swallow test. They gave him different consistencies of liquids, puddings, and crackers laced with iodine. Then as he swallows, consecutive ex-rays are taken to see if he can swallow without aspirating. They want to be sure the food is going down the right pipe. Up until now, the family has been feeding him pudding for a few months (against doctors orders). We were leaving the more solid consistencies to the experts, just in case he did choke and aspirate on the food.

Unfortunately, the doctor was not happy with the results of the barium test and feared that he did not have enough muscle strength in his throat to swallow completely.....so still no food and all nutrients would still be fed through a tube to his stomach. I thought they were just being to cautious. My argument was, how is he going to strengthen the throat muscles if he doesn't use these muscles....so the family will continue to sneak in pudding to feed him in the room.