The following log is a detailed post-operative recollection of our son James’s progress and quality of life improvements. We hope this helps you get a more detailed picture of what you could expect after going through surgery.
Be advised that every case is different, and your son could do better or worst than ours. Maintain your expectations anchored and subdued, that way you will be able to be surprised and encouraged by the progress made. There are no guarantees in life, and this is no different, we feel doing our best to help him is the best way to go!
August 4th 2020 – James S. Benet at 20 months of age- Metopic Craniosynostosis Surgery with Sphenoid ridge on greater and lesser wings removed at Rady’s Children Hospital San Diego. Dr. Amanda Gosman Craniofacial Surgeon & Dr. Michael Levy Neurosurgeon. With the guidance help of Dr. Takeyoshi Shimoji from Okinawa Japan.1
August 6th 2020 – James Opens right eye ¼ of the way regaining visibility and starts to normalize his vision and starts walking steps.
August 7th 2020 – James has several breakthroughs. Opened both eyes ½ way inflammation decreasing.
- Looks and plays with Red Elmo Doll which was previously fully ignored after age 13mo.
- Looks at mother’s eyes briefly and notice when she and father enter the room. (Not done that since the end of month 13th.
- Looked at father’s eyes while adjusting diaper and when father got close.
- Solved electronic game puzzle 6 pieces in 20 seconds out of 10 pieces. Most he could do before surgery is 2 or 3 maximum before losing interest.
- More calm and concentrated when a book is read to him. Before surgery it was impossible for him to look intently for more than a few seconds.
August 8th 2020 – James seeks physical contact with mom and dad by reaching with arms and getting his back against our bodies. This is human contact that was not happening before the operation and before only until the end of his 13th month.
More eye contact than before the operation and interest in his surroundings looking for new things to touch and experiment. Autistic behavior is still present with tip toes and mostly avoiding eye contact.
Uses a keyboard toy attently which was mostly ignored before the operation and chooses specific notes that call his attention.
Hugs Elmo doll while lying in bed.
Reached out to dad when his diaper was dirty for need of change. He used to do that until month 13th.
August 9th 2020 – James asked for food from our plates which rarely happened before age 13mo. He also laughed when we played with him and his toys. He also asked to drink from a soda can that mom was opening. Last time this happened was when he was around 12mo old.
Very interested in turning lights on and off from a remote control and noticing that different lights correspond to different buttons.
August 10th 2020 – James has reached for food on our plates and is interested in what we eat. Last of this behavior was at 13 months of age.
He now cries or gets angry or desperate when having a dirty diaper even with urine. He stopped alerting us for a diaper change from age 13 months to 20mo proper to the operation. Clearly there is a direct correlation with the brain area expansion.
Was able to arrange colored figures on the tablet in specific buckets 4 times in a row today. He never was able to do this before. He is now learning color and shape distinction in organizing things.
He cried when we tried to make him say “Mama” after a few minutes of trying, being exasperated. He also cried more before bedtime, we estimate he has operation pain and we had been reducing Motrin, we gave him 5ml of the Motrin before bed.
*James continues to walk on Tip Toes mostly, only flattening his foot while on a run.
Head scar looks very healthy and closing properly except for the left temple area where it looks reddish due to overly tight stitching. We added Bacitracin two days in a row and it has helped with redness.
August 12th 2020 – James touched father’s face while looking at it in two occasions. This had not happened since he was 13mo of age. Fuzzy eating at night, probably due to pain medication upsetting his stomach.
Today was the one-week post-surgery check-up, the wound is doing fine and no signs of infection.
Solving simple puzzles on the tablet with more patience and playing with some new car toys. Still biting wheels and trying to spin them.
August 13th 2020 – James has completed more difficult activities on the tablet and has resumed eating well which may signal feeling better after surgery.
He is playing more with his toys but still not the normal time a child without Autism would. Spins wheels on cars and tip toes most of the time when standing up.
Looked at Mom and Dad’s faces and reaches to be carried and pampered slightly more than usual. He is more alert when people enter the room instead of ignoring, still not looking directly at eyes immediately but will glance after a while.
August 15th 2020 – James while playing with a toy was asked by mother to give her the toy. After a few requests, he got the toy close to mom’s hand then immediately turned around and walked away. This is the first sign of sharing he has made since age 13 months.
August 16th 2020 – James has been feeling better after the operation and is showing more interest in playing with toys. He also is making more random eye contact and reaching out to mommy and daddy when he needs something. He also alerts when the diaper needs changing with pulling arms or screaming. He still cannot point at objects he needs like his milk bottle but does say “Nam Nam” when thirsty, which is still the only word or language that has returned since age 13 mo.
August 17th 2020 – James has expressed interest in toys more and has been craving more social contact. While in the garden today, he was excited about touching flowers and looking at the trees and birds. He made new sounds while excited that seemed like words but nothing intelligible yet. He laughed and got very happy at a new game exercise with cartoon characters from Peppa Pig on the tablet.
Head suture stitches have started falling off today in some parts. No sign of infection. Eyes and face are also less swollen, and the plates that anchor the new skull structure are now prominent.
Noticed his uncle on the video chat screen and looked at him several times instead of ignoring interaction, which happened before the operation.
August 18th 2020 – James notices mother and father entering room and looks at mother directly as she enters or leaves the room. He laughed and enjoyed dancing with mother by rotating shoulders and hips. Heatwave in California exasperates him and wants cool air and shirt off. He is tolerating the pain medication more and makes less fuzz when given by mouth.
August 19th 2020 – James laughed several times and got excited throughout the day. He noticed his uncle on the video chat for a few seconds. Got excited and laughed out loud at some air circulation fans at the doctor’s office building.
He wanted to copy dad’s lip motion while trying to teach him to say MaMa, James’s lips moved the same but no sound was attempted!
His second post-op visit went great and his scar is healing very well. Next visit in 3 weeks.
He used to vomit in the car from motion sickness every trip before the operation without fail. He did vomit today but had milk right before the trip back home. We blame ourselves for this incident. We have the suspicion that the vomiting in the car stemmed from pressure in the skull as it happened every time.
August 19th 2020 – James was seen by behavioral doctor today and is setting up a baseline cognitive examination, language therapy and motor evaluation. To establish a starting point for possible therapy if Autism is determined. The big changes post op were discussed and the Doctor was very encouraged by the progress.
August 21st 2020 – James has more eye contact with both parents and has shown interest in nature while being outside, very interested in trees and birds. He has been laughing spontaneously at random things and cartoons displaying a very happy attitude. He tries to copy lip motion when we repeat the work MaMa to him but still no sound. Speech therapy is being set up for his case in the near future.
James noticed dad entering the room by looking at him twice today which is a very good sign, this did not happen since age 13 ½ months. He also tried to touch dad’s tongue or teeth while close by. Previously ignored face completely.
James was able to complete a new game puzzle on the tablet that he previously had trouble with.
James reached for mom’s arms and gave her a neck hug, it was not just clinging but a real hug and he pressed his head at an angle close to her.
Showed interest in his toy piano by repeatedly playing random notes and fixating on some of them.
August 24th 2020 – James was able to place several pieces inside a toy castle which previously was hard for him. He also plays with a roller on the side of the toy and experienced textures in a book that has animals with fur, seemed particularly interested in furry patches. He also craved mother’s arms and was happy when held.
Was very angsty during the day in what seems to be upper molars coming in, when eating he placed and chewed specific food for relief.
Was very interested in grabbing shadows we projected on his high chair table with fingers doing movements. He tried to catch the shadows and laughed while doing it. This is a clear improvement as the last time he liked shadows as 13 months.
Still walking on tiptoes but uses flat feet while picking up speed.
August 26th 2020 – James has played with some cushions and played by hiding beneath them, this is a new behavior that indicates growth.
Played with a small plastic ball by taking it and walking around the room then placing it in the same spot, later on, to leave it in order. Before it would end up on the floor or lost.
August 27th 2020 – James is 21 months today –
James copied dad making noise on the wall with hands after dad said you do it try it. He mimicked the activity which is an encouraging sign.
We suspended Tylenol today and it seems he was more alert, less distracted and could finish more puzzles on the tablet that he could never do before, while at the same time looking more at faces of mom and dad. We changed to Advil for the skull pain and it seems to be better for his concentration.
He made a small clear “Ma” sound isolated, maybe Mama will be spoken soon again since 13 months was the last time he said it.
He was very happy when dad got him out of the high chair and looked at his eyes and gave him a hug. Very nice step.
August 30th 2020 – James enjoys new castle toy and spins a side barrel wheel every chance he gets and presses a squeaky button that was hard for him to do before.
August 31st 2020 – James finished two new puzzles on the tablet and he is now using both hands at the same time as his speed has increased considerably. He even figured out an exercise we had never played and got very advanced on it. He enjoys going outside and noticed details like birds and debris on the grass.
Still no language but new sounds attempted, he has said “Maa” twice today.
September 4th 2020 – James has now crossed the one month after the surgery threshold, he is healing well and completing more tasks like stacking cups, solving harder puzzles in the tablet and at faster rates with two hands, sorting figures on toy, running more and looked many times at mom and dad. He has been angsty with new molars coming in and a special cognitive evaluation had to be pushed back a week because of his lack of focus due to the pain.
The head scar is starting to be covered by hair and looking healthy. Tylenol and Advil were suspended since the end of August and he is doing fine. There is still no word vocabulary but he has been attempting new sounds.
September 9th 2020 – James has played with his father in a new way. Father makes hand gestures approaching him for tickling and he forcefully rejects the hand with both arms but sometimes allows it with a big giggle. After a while he asks for more of the game when it has stopped for a few minutes. He likes the game and engages father to play!
September 14th 2020 – (SHARING!!!) James has had a big breakthrough today. He shared several times food with his mother and father. He had not shared anything since being 13 months. He is also more inclined to play with his toys and engage in fun play with father and mother.
September 15th 2020 – James has continued to share food with mother and father actually picking larger pieces to share instead of a random one, showing some care and empathy for the request. He is also wearing new shoes and starts to use his feet flat instead of tiptoeing more and more.
September 16th 2020 – James has now accepted watching a few minutes of TV with mom and dad. Before it was an angsty cry immediately only wanting to watch the Peppa Pig Cartoon and nothing else. He seems to be slowly broadening his interests.
Using his new shoes and boots, James has been walking more flat footed instead of on tip toes. He seems to rest his feet more even when shoes are off.
James gave a kiss on the cheek to dad out of the blue which is a first!
September 22nd 2020 – James has been improving in motor skills like grabbing and placing things. He now masters stackable cup toy by placing then inside each other. He also tried to do a tower with the cups. He now masters toy bin puzzle on the tablet by placing all 10 toys within a minute by dragging and dropping.
He seems to have PTSD from the operation as he gets very disturbed when we take him to a doctor’s appointment, even the Flu Shot was a very harsh event emotionally with heavy crying.
James likes opening and closing drawers and he has looked directly into parents eyes at least once a day for a couple of seconds.
Breakthrough: He looked at father when he entered the room and made a sound by turning and looking at him. Before the surgery he would ignore entrances and exits of people with or without sounds.
September 23rd 2020 – James was able to figure out how to press play and pause on youtube on a tablet without us teaching him how to. This was done by observing and copying our actions over time. We were surprised how fast he was able to pick up this task when he wanted. He also scrolled and pressed on a video and pressed play to watch it. In our view this demonstrates high concentration level. He is using shoes most of the day while standing and tip toe walking has gone down considerably after shoe use.
He is still unable to point at objects he wants or food he needs unless it is very close to him. He does reach out for diaper changes by grabbing the arm of parents.
September 24th 2020 – James has sat down and even rested on a cushion to watch TV cartoons. Before he was only sitting or standing. This is a new behavior that looks normal to other children.
September 26th 2020 – James started blowing air through lips again. He stopped after 1 year of age. He also was playful and wanted to be tickled. He hugged his Elmo doll and is also expressing new sounds but no words yet.
He still has an issue with flowing water like that of a shower or sprayer. Gets fearful when any water touches his head. It must be a sensorial symptom of autistic origin.
September 27th 2020 – James has started throwing objects instead of just dropping them. He only did this twice before year one and it seems to be returning!
September 28th 2020 – James has shared a toy with mom and dad twice today at different times. Sharing was impossible before the surgery as he did not have any notion of us as people that might need something. He has played with his toy cars and other toys a lot today which seems to be inching toward pretend play.
September 29th 2020 – SPEECH STARTING – James Said BaBa BaBa when dad held him after a milk bottle and said Ma Ma Ma Ma a couple of times when being near mother. James stopped saying these words at month 13 ½ and had not recovered the ability. It seems language is starting to come back which is very encouraging!
September 30th 2020 – More SPEECH – James Said BaBa and Mama Mama several times through the day surpassing 10 instances. The most important of these was when his mother was helping him go down the stairs and he said clearly MaMa as in you got me or you are helping me. This is amazing progress.
He is also more present and looking at his grandmother, and even smiling at her. This is major facial contact progress.
October 4th 2020 – James looked around for his father expecting his return after a short absence while remaining with mom, when father came back he ran to him with open arms to be carried in anticipation. After being carried he hugged and grappled his father and showed signs of loud happiness. This is the first time this happens and a breakthrough in people awareness.
October 7th 2020 – James shared food with father and twisted his hand to place the food item. Then checked to see if father ate the food. It shows improvement in empathy/sharing.
James was able to descend on his own down his new slide without assistance, then rapidly wanting to slide again and again. He enjoys the slide toy and asks for it by reaching to it.
October 10th 2020 – James was able to insert puzzle pieces on a sorter by rotating and aligning them in the specific shaped holes, he is improving greatly on this front.
James was able to go up his new slide on his own, sit down and slide down three times in a row, then got tired and was not able to do it.
Speech has been limited since the big days a week before, only one or twice has he said Mama. We are hopeful the speech will return.
James has started occupational therapy and will start several exercises to improve his coordination and mental acuity.
James is improving daily on electronic puzzles, and starting to sort things by color.
He has also been very annoyed due to molars coming out, he has had a hard time concentrating and as a side effect he has been very angsty and showing symptoms of Autistic like behavior like hand flapping regularly. We are hopeful that after the molars come out that he will get more focused.
October 12th 2020 – James had his first bath in a new inflatable tub we got for him. He was able to enjoy over 25 minutes while playing with toys inside. He usually cries and screams when bath time is happening, we decided to be hands off on recommendation of the therapist. A peppa pig cartoon helped him get calm while having the bath. Hair washing was in the end the reason for crying and tantruming but once over he was happy.
James can now run and evade obstacles better than before, and run into mom and dad’s arms upon request.
James is now acquainted with brushing teeth and he somewhat helps by chewing on the brush.
October 24th 2020 – James was able to shout to his father the word DaDa when he left abruptly before his bedtime. James was expecting his dad to play with him a puzzle on the tablet before bed and was very distressed that that did not happen that night.
October 28th 2020 – James has been progressing with physical and occupational therapy sessions, being able to do a step up and down without falling on a platform, he also mastered new educational toys like a piggy bank and is starting to play with a xylophone, magnetic painting and mega blocks. Some of his progress has been remarkable and fast considering what James has been able to do in a couple of weeks, takes several months on kids with similar issues. We are encouraged by his progress.
November 2nd 2020 – James was able to complete a 4 piece jigsaw puzzle on his own in five occasions. His motor skills are improving at a rapid pace with hand and foot coordination getting more flexible and reacting faster. He is able to climb furniture and reach things he wants.
November 11th, 2020 – (New Sharing) James has been progressing physically and now can consistently go up two steps and down 2 steps without falling most of the time. He also has now shared food intended for him into his mother’s mouth, as a clear sign of sharing.
He has also been improving hand and wrist motion with improved angles which permit more careful placement of blocks and puzzle pieces. He is now considered at 23 months at the level of a regular 18-month-old toddler when it comes to physical strength and dexterity.
November 20th, 2020 – James has been improving dexterity in wrists and fingers. He can now complete 10+ shape sorting puzzles in the tablet and several piece sorter in the real world.
Speech has taken a back turn as he no longer uses any words except “Nam Nam” for food. This is to be expected according to the therapists as the brain is mapping motion and dexterity along with puzzle-solving instead of speech.
November 27th 2020 – James has turned 2 years old today! He was not able to blow the cake candles buth thoroughly enjoyed the cake and icecream asking for more.
James has now become proficient in threading small blocks with holes using a needle and wood toy, pushing and pulling.
November 30th 2020 – James has been able to fully complete an 8 piece geometric shape sorting puzzle made of wood. He was unable to do more than one piece 4 weeks before. His hands are becoming better at rotating and aligning objects. Wrist motion is still very stiff but should improve with more exercises.
December 2nd 2020 – James has up and down days with Autistic like symptoms. Some shouting and biting has been increasing at times but still in controllable levels.
He is learning to use a spoon to feed by handling it the right way and scooping direct to mouth. He has been asking for dad to carry him on his back and is able to climb on top to get a ride when dad crouches to allow him to. This play interaction is very encouraging.
December 7th 2020 – James has been able to complete a circle shape with a magnetic sketch pen. This is encouraged by copying parents doing it, he is showing more speed in processing spatial concepts and adapt to new challenges.
He is now able to take his socks off using his hands as well as his shoes. He also now likes to dunk hands in water to wash them.
December 8th 2020 – James while displaying Autistic like symptoms such as constant nagging sounds and restlessness was aided by the use of Bifidobacter probiotics which are now being tested to reduce or cure Autism by flora replacement therapy in a Joint study by Arizona State University and Caltech. It was apparent after a day on the probiotics, his focus, attention and concentration improved and most of the Autistic symptoms were reduced to barely noticeable.
Long-term use of these probiotics which aid in the production of neurotransmitters that deal directly with Autism behavior is a new experimental therapy for reducing Autism in children. We plan to give James Bifidobacter probiotics as an added component on his diet after the results we have seen in such short a time.
December 12th 2020 – James is now able to go up and down stairs with supervision and hand holding while carefully grabbing the hand rail. He was jittery and scared heavily before especially while going down.
He was able to follow indications to jump and crouch as well as lift his arms while copying the therapist. He is also able to pull socks off and pull his pants legs off as well.
December 14th 2020 – James was able to lift leg outside of pen and get out on his own. He also was able to look into eyes when pressed with objects placed close to the parent’s eyes to entice gaze.
December 15th 2020 – James has been getting acquainted with a small stylus on the tablet and is getting proficient at it. Finishing puzzles and navigating. This is improving his wrist motion.
New sounds are uttered every day, we are encouraged by his progress and believe along with the therapist that speech is coming.
December 22nd 2020 – James is making new sounds and is now able to rotate pieces of puzzles in the air before inserting them.
December 25th 2020 – James is starting to jump in place and enjoys jumping with hands held on the bed and couch. He routinely asks for assistance to jump by reaching out to parents hands. He laughs as he jumps.
December 29th 2020 – James has started uttering “Yah” as a compliant phrase. He is also able to complete two shape sorting puzzles that were very difficult for him before.
January 2nd 2021 – James is now able to quit applications on the tablet and browse around folders for new applications to open. He learned by looking at his parents and was not shown directly how to do it. Mirroring the behavior is very encouraging.
January 8th 2021 – James is now able to take shoes and socks off on his own and can pull his pants up when raised above the knee.
January 15th 2021 – James looked at his father in a way he never has before. It was after the father ended blowing bubbles and him pinching them. He looked at his father in a surprised and somewhat angry way when the bubbles went away. The gaze was about 3 full seconds and was very strong.
January 24th 2021 – James has started probiotic treatment with custom Tots probiotics by Sun Genomics based on his specific gut flora requirements compiled from genetic testing of gut bacteria. We expect the new flora to be beneficial to his overall wellness and cognitive abilities.
February 8th 2021 – James has finally been able to recognize and use the “More” sign language symbol by touching hands together to signify a want. In this case it was “More Bubbles” This is a big communication breakthrough.
February 12th 2021 – James is now able to insert a tower of circular pegs in order and out of order without much trouble. He trained in physical therapy to strengthen his arms. He also shares the pegs with mom and dad as part of the exercise and is now requesting them to spin the pegs on the table as it is amusing to him.
February 14th 2021 – James is now hugging his mom often by getting close to her and hugging her arm and or arms while looking at her. This shows a lot of interest in human contact and love.
February 16th 2021 – James is now sitting and grabbing his tablet while putting it on his lap and navigate around the apps including launching, quitting, selecting, and moving folders. He knows the games he wants but does not know what all the icons do as of now.
February 20th 2021 – James has been able to suck water from a straw on a glass twice but is still hard for him to do. He does not enjoy teeth brushing and tries to stop it with hands and tongue.
February 23rd 2021 – James enjoys walking outside and runs happily in the grass. He is walking less in tip toes especially when wearing orthopedic shoes.
February 27th 2021 – James is more and more able to follow directions while dressing like placing feet and legs in pants, pulling pants up and placing arms in vests and shirts.
March 10th 2021 – James has started pointing at his mother’s face and touching her while saying Ma… Long pause and Ma… again.
March 11th 2021 – James has graduated to a forward-facing baby car seat and did not get dizzy after over an hour in the car. He used to vomit almost every time while facing backward.
March 12th 2021 – James is now bouncing a ball with both hands and throwing it against the wall to see it bounce back. He is very interested in object reactions. Continues to improvise the more sign on different things like water and food as well as some play activities.
March 14th 2021 – James has been able to solve a stacking shape puzzle intended for 3 to 4-year-olds. At only 2 years 4 months, it is a clear sign of his mental capacity. He is also starting to jump in place and achieving air up to 2 inches in some cases.
March 17th 2021 – James has been able to sort objects by color on different bins. Also enjoys playing with Play-Doh and is able to stretch and pull against his parents on strings and stretch worms.
March 20th 2021 – James has started playing pretend with a semi-truck toy using it as intended which is normal behavior. He is also expressing new sounds every day and is being more talkative.