The Preemie Growth Project

Sharing Vital Information About Nutritional Issues for Premature Babies & Special Needs Children

Examples of Improvement

This document can be printed out as a PDF for your physician here: Examples of Improvements from Feasibility Study (All Categories)

June 2012 – July 2013


This document contains samples of parent reports from the “Phase 2: Infants and Children with Neuromuscular Issues” feasibility study that was run from June 2012 through July 2013. Specific analysis and conclusions can be found at and specific breakdowns by neuromuscular diagnosis and gestational age are available at the website.

It should be noted not every subject saw improvement in every category, but overall, 111 children out of 134 (83%) experienced improvement in four or more defined categories.

It should also be noted not all parents reported the initial status of their children in each category and some did not recognize their child had a particular issue until after improvement was seen. This was especially true for “Sensory Processing” – only 20 children were reported as having this diagnosis yet 43 children were seen to improve.


I. Changes in Tone & Strength (508 Reports): 93 of 134 (69.4%) Improved
II. Changes in Weight & Height (830 Reports): 116 of 134 (86.6%) Improved
III. Changes in Cognition (360 Reports): 77 of 134 (57.5%) Improved
IV. Changes in Communication (475 Reports): 89 of 134 (66.4%) Improved
V. Changes in Bowel Function (420 Reports): 89 of 134 (66.4%) Improved
VI. Changes in Appetite (605 Reports): 90 of 134 (67.2%) Improved
VII. Changes in Energy (371 Reports): 90 of 134 (67.2%) Improved
VIII. Changes in Sensory Processing (271 Reports): 43 of 134 (32.1%) Improved

I. Changes in Tone & Strength (508 Reports): 93 of 134 (69.4%) Improved

Participant 001 – Male (7 Yrs, 2 Mon):

Day 35 – His legs seem to be a bit stronger. When we lift him (he is a quadriplegic) he squeezes our arms with his legs hard enough to bruise them. This didn’t happen before! He also seems to all of a sudden have fat deposits on his arms and legs we didn’t see before. His legs actually feel thicker. Also, his bib is getting too tight for him, so his neck must be getting thicker too.

Day 154 – He is now regularly scooting across the floor 50 ft in the gait trainer! He also recently was supported in a seated position with legs crossed, only steadied at the shoulders by the therapist’s hands, and he kept his head and trunk up well! He also did this with the same support in a seated, dangling leg position. He continues to hold his head/trunk up well in the gait-trainer. His ability to keep water in his mouth while drinking continues to be variable.

Day 377 – He now stands taller and better in his gait-trainer and tolerates longer periods in it.

Participant 002 – Male (5 Yrs, 7 Mon):

Day 45 – Lower extremity: reduced tone and increased strength, balance, and range of motion in all spastic/affected muscles/limbs (arms, legs, hands). [Child] had a hard time sitting up for a long time, he would get tired, as he has mild spasticity in his left hip, and I am no longer seeing this. This tiredness in the hip was more obvious since his Botox injection wore off, and now it is correcting itself. I decided to cancel his Botox injection treatment, just to see how this supplement is affecting him, instead of Botox. It is better and I am no longer planning on Botox treatment, for now, and hopefully to stop it. Currently, only last week, we started doing serial casting in both feet, for stretching (he had this scheduled), and he now has significant improvement in muscle ranges, when measured, before the cast was put on. His heel cords and hamstrings, as compared to a few years ago, has significantly improved, i.e. one foot (left) changed from -10 to normal) in range, and one (right) was better (-15 to -10) (this has more spasticity). He is walking with the cast too! (this normally takes a lot of balance). Upper extremity: stronger fingers and hands (grip/grasps is much stronger). [Child] is leaving his bed (never had the strength to do this, and needed help prior to this supplement), trying to jump off the toilet seat, he got stuck in between the bed and the bedhead last week. I have to start to secure the home. He is walking longer, climbing longer, and as I said in my prior email, he continues to have less aggravation to do his activities/exercises, less irritated, and more strength to do longer physical exercise, and therapy. Before, this new strength, he would cry after one flight of stairs, now he gets to the bottom and continues to walk.

Day 124 – Getting stronger each day! Less Tonic, more flexible in arms/fingers/legs. We are practicing yoga stretches! Stronger torso and walking straight and upright, than ever before.

Day 170 – Strength – legs much stronger, walking without orthotics (better balance than before)

Participant 172 – Male (2 Yrs, 4 Mon):

Day 14 – Before he was ‘W’ sitting most of the time. Once in awhile he’d put both legs in front, but only rarely on his own. His legs are very tight. In the last week I’ve seen him putting both legs out in front much more often and he seems more stable.

Participant 005 – Male (10 Yrs, 10 Mon):

Day 31 – Strength improvement. Now he likes to show off how he crab-walks, can hold himself up on chair arm rests, and the biggest thing I noticed is how he can run now. He used to lumber along, with a big side to side motion and was very heavy-footed (like a dinosaur!). While fighting a light-saber battle to save our planet from destruction with his brother last week, he was actually running.

Participant 020 – Male (4 Yrs, 1 Mon):

Day 48 – He’s so strong now! He feels more solid. He’s able to lift his body weight when he’s on bars. At the park this week he climbed up to 7 feet using only his hands to pull his body/legs up. He’s always been ahead on large motor skills so I wasn’t expecting to see any difference in this area but he’s definitely showing changes. At bath time he even looks more muscular.

Participant 025 – Female (3 Yrs, 2 Mon):

Day 19 – According to her physio, [Child] seems stronger than three weeks ago.

Day 151 – Has learned to get on a big girl swing, and taught herself how to get it going, and how to swing her legs. A little bit more obsessed with the swing now, if that’s possible.

Participant 074 – Female (6 Yrs, 1 Mon):

Day 32 – Her ortho Dr. saw [Child] on Monday. He had previously stated that her biggest issue was going to be the tone in her right foot. That is her more affected side. Or it was… on Monday he couldn’t get her right foot to respond with clonus no.matter.what. He was very puzzled and said that is not typical!

Day 53 – Ok, wow! Her tone improvement in her ankles remains consistent. The past 2 weeks I noticed a big change in her hamstring. It went from being incredibly tight to me able to stretch it to a full range of motion with minimal effort. She even cheered and said, “Yay!! It’s not tight!” This from the child who would clench her teeth when I stretched this leg. Also, her right arm has shown massive tone improvement. I mean BIG change in the past two weeks.

Day 88 – [Child] presents with hypertonia (tight muscles). Her tone has continued to improve on the supplement. Specifically, we have noticed a BIG change in the tone in her right arm. It was so tight that she could not turn her hand palm up with her arm outstretched in front of her. It was just very tight in general in her bicep and shoulder area as well. I went to stretch her after skipping a few days and it was like when you think there is one more step and hulk stomp the floor. I went to stretch her and just kept on going b/c it was SO much better! I couldn’t believe it!

Participant 106 – Female (2 Yrs, 8 Mon):

Day 34 – Low tone continues to improve almost on a daily basis, today she held herself up on all 4’s for 1 1/2 mins before slowly bringing herself down to rest for only a few seconds and was back up again for another minute. High tone is slowly improving. Big news is her next round of botox has been cancelled (just prior to starting the supplement, her tone was so high, I couldn’t wait until Dec 21st for the next series of botox injections) She’s always been able to independently flex her ankles but still had some tightness when doing so, she’s been moving them much more freely over and over again. Overall, the high tone in her lower body seems comparable to that of July/August when the botox was peaking. The high tone in both arms has COMPLETELY gone away. She has made great improvements in fine motor recently.

Participant 004 – Female (11 Yrs, 10 Mon):

Day 35 – We see tremendous improvement in head and truck control as well. Her intentional reach and grab has increased in accuracy as well as speed. It has been amazing.

Participant 038 – Female (10 Mon):

Day 76 – She is MUCH stronger in the core and has made a significant change here in the last week. She is holding her head up for an entire 30 minute video now.

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II. Changes in Weight & Height (830 Reports): 116 of 134 (86.6%) Improved

Participant 002 – Male (5 Yrs, 7 Mon):

Day 67 – Gained three pounds, and two/three inches.

Participant 058 – Male (2 Yrs, 1 Mon):

Day 70 – He is ALWAYS hungry. I also know he is taller because I have had to adjust his stander height twice in the last month.

Participant 154 – Male (4 Yrs, 5 Mon):

Day 105 – Grew an inch, gained a pound

Participant 090 – Male (1 Yr, 1 Mon):

Day 122 – Woo hoo!! We gained another pound!!! Yay! His appetite has increased and he’s eating great!

Participant 045 – Female (3 Yrs, 6 Mon):

Day 24 – Gained a pound after 10 days on supplement. First weight gain achieved in over 6 months.

Participant 105 – Female (7 Yrs, 4 Mon):

Day 36 – She has grown 7/8″ in one month without gaining any weight!!!

Participant 102 – Female (6 Yrs, 8 Mon):

Day 72 – [Child]’s appetite has typically been fairly consistent. In the last week, she began taking a new medication for ADD, which has decreased her appetite. Her weight has increased by 2lbs since beginning the PDCM though.

Participant 111 – Female (3 Yrs, 9 Mon):

Day 130 – Weight up 1/2 lb since last weigh in.

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III. Changes in Cognition (360 Reports): 77 of 134 (57.5%) Improved

Participant 047 – Male (7 Mon):

Day 53 – He’s noticing things that happen on the other side of windows now and has started to develop object permanence.

Participant 007 – Male (10 Yrs):

Day 76 – Teacher and school specialists reported that he has improved in his ability to do his work in the classroom. He is more in control of his body. He has reduced his need for brushing to 2 a day instead of every 2 hours during school time. He is able to read on his own now. Handwriting and drawing skills have improved. Para pro said he needs to doodle every minute and it seems to help him to focus and he is able to follow the lessons. Happy mood except when he gets hungry.

Participant 109 – Male (2 Yrs, 5 Mon):

Day 87 – Still improving in this category. He can match his shapes, including diamonds, and ovals! He knows how to match his colors, he is counting with us to ten and also he is pointing at items and counting 1, 2, 3, 4, 5! Love it!

Participant 036 – Male (1 Yr, 6 Mon):

Day 106 – Definitely tracking us more and seeming to identify us. Holding longer gazes with faces of his therapists. Being more observant of surroundings and possibly moving toward general areas with a purpose.

Participant 090 – Male (1 Yr, 1 Mon):

Day 145 – Much more desire to learn, pays closer attention to me while I’m speaking with him. Better eye contact everyday! And seems to be wanting to please you, if you tell him to do something and he is able to do it or at least try to he gets excited about it now.

Participant 103 – Female (6 Yrs, 8 Mon):

Day 22 – Absolutely! We are amazed at the change. Before we began the supplement 22 days ago, I had a meeting with my child’s teacher and we discussed the fact that she doesn’t understand math at all. We talked about bringing in supports for Math and I explained I was basically doing her Math homework. That was only 3 weeks ago. This last week, my child worked on her homework all by herself and she got every single problem right! Amazing! She is also beginning to show an increased ability with problem solving and cause effect. Her comments reflect she is thinking things through at a different level and she is making independent choices.

Participant 185 – Female (8 Yrs):

Day 29 – Talking in more engaging and learning ways. When doing homework talked through it for a good amount of time and was multi-tasking with ease. Lasted for 1/2 to 40 min and then it was like a switch was turned off. Is telling me more things that happen at school academically which is new, especially in details.

Participant 025 – Female (3 Yrs, 2 Mon):

Day 69 – Starting to stack toys rather than knock them down. Will follow simple instructions like ‘put that in the bin’ or ‘bring that toy to Mummy’ which she did not do at an age appropriate time.

Participant 110 – Female (6 Yrs, 11 Mon):

Day 71 – Huge improvement with asking and answering more complex questions. She is beginning to recall events that occur during the day. She is demonstrating more consistency with retaining skills worked on for months (ie, reading sight words (she consistency read 5 words all week), counting with 1:1 correspondence, and following 2 step directions more consistently!

Participant 061 – Female (2 Yrs, 9 Mon):

Day 90 – We continue to see an exciting increase in her visual attention to objects that have been placed in her hands. Also, she seems to have a longer attention span and interest in new toys. She seems to be developing quite a sense of humor.

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IV. Changes in Communication (475 Reports): 89 of 134 (66.4%) Improved

Participant 090 – Male (1 Yr, 1 Mon):

Day 23 – Eye contact when spoken to has been a struggle for him (he has CVI) but, lately he has been very consistent with that and his verbal communication is about the same as the last report. No regression…has continued to use new sounds!

Participant 089 – Male (5 Yrs, 1 Mon):

Day 25 – He has had a word explosion! Much longer sentences and he is able to get out bigger and clearer words.

Participant 093 – Male (3 Yrs, 9 Mon):

Day 56 – Much more vocal, much more determined to communicate. Using PECS exchange and started to take PECS cards out of binder and hand to person to hear the word, speech therapist believes this to be cognitive and early reading. Wanting to understand the words. More willing to vocalize and attempt imitation of sounds or repetition of word to get item.

Participant 035 – Male (3 Yrs, 3 Mon):

Day 60 – More vocal. Developing a like for singing. Although it is difficult for him due to vocal cord paresis following his trach, he is singing a few recognizable songs. It’s so sweet.

Participant 153 – Male (11 Yrs, 5 Mon):

Day 86 – [Child] wrote a small paragraph on his own. Hooray for written expressive output!

Participant 017 – Female (5 Yrs, 1 Mon):

Day 37 – Her vocabulary just exploded! She really talks all day non-stop. She is starting speech therapy at an agency today.

F Participant 057 – emale (2 Yrs, 1 Mon):

Day 70 – Over the past 3 weeks, her communication has taken off. She went from saying one word at a time to out of the blue singing almost all the words to more than 4 songs (including ones we don’t sing to her), and just this morning, she actually had a back and forth conversation with me, answering questions.

Participant 064 – Female (3 Yrs, 4 Mon):

Day 70 – She has been in speech for 1.5 years. In the last 3 months…her speech has improved the most. She has apraxia, but seeing remarkable growth. Stringing 5 and 6 words together ALL THE TIME.

Participant 110 – Female (6 Yrs, 11 Mon):

Day 71 – TALKING NON STOP! She is seeking information to clarify things, she using more words in connected speech, she is beginning to use pronouns (although incorrectly at times). Her articulation is still very very poor.

Participant 076 – Female (1 Yr, 11 Mon):

Day 73 – Even more sounds and starting to do more repeating what she hears.

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V. Changes in Bowel Function (420 Reports): 89 of 134 (66.4%) Improved

Participant 181 – Male (2 Yrs, 3 Mon):

Day 33 – Previously he would go every other day (sometimes every day), but he was eating a LOT of fiber that helped. Even after decreasing the fiber he has been very regular since starting/stopping/starting the minerals.

Participant 035 – Male (3 Yrs, 3 Mon):

Day 34 – Increased number of bowel movement with change in odor that is very difficult to get out of clothes. More irritating to his bottom.

Participant 132 – Male (4 Yrs, 1 Mon):

Day 34 – We have had a consistency in regards to bowel movements that we have never had with [Child]. Even with Juice and Fruit Eze we were not able to maintain this level of constant regularity. [Child] has been regularly using the potty and notifying us that he has to “poop” for 3 weeks now. He went from spending 45 minutes or more on the potty to completing his “business” in 5 minutes or less!

Participant 003 – Male (5 Yrs, 2 Mon):

Day 70 – [Child]’s bowel movements have been normal. Having said that I need to note that he is usually constipated and I have had to give him apple juice in the past to help him through it, but he’s not had apple juice in over a month and is not constipated.

Participant 123 – Female (1 Yr, 5 Mon):

Day 9 – Yes, huge change, [Child] would usually go no. 2 every other day, [Child] now goes regularly every day sometimes twice a day. With no pain.

Participant 064 – Female (3 Yrs, 4 Mon):

Day 10 – Stools are much more loose and have yet to see a hard stool.

Participant 190 – Female (9 Mon):

Day 15 – Her bowels are more solid now, they used to be mucousy and with a lot of what looked like curdled milk in it. Now they are dense and green with less of the curdled stuff. The only thing is her bowel movements have slowed down since we started, this past week she only pooed once. Granted it was a dense solid normal looking poo. Also her poos were foul smelling, they now just stink.

Participant 122 – Female (3 Yrs, 11 Mon):

Day 65 [Child] is no longer using her Miralax. Her BM’s are much more frequent and she is much more comfortable.

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VI. Changes in Appetite (605 Reports): 90 of 134 (67.2%) Improved

Participant 022 – Male (3 Yrs, 1 Mon):

Day 17 – [Child] is tolerating his tube feeds so much better, less vomiting and he is actually excited at feeding time.

Participant 047 – Male (7 Mon):

Day 26 – He’s nursing more around the clock. Where he used to go 5-7 hr stretches at night, he’s now nursing every 2-3 hrs.

Participant 090 – Male (1 Yr, 1 Mon):

Day 50 – His appetite has been awesome since we have started the supplement…It just continues to increase and he is enjoying meal times more and more each day!

Participant 001 – Male (7 Yrs, 2 Mon):

Day 105 – He has developed an ENORMOUS appetite. Before he just had consistently better eating. Now, he is eating an incredibly huge amount. Please keep in mind, this is good news for us. He has been consistently way behind on the height and weight charts. We’ve had to consider a feeding tube for him more than once. Now that he’s on the supplement, I’m hoping that won’t be necessary! And when I say a huge amount, he may consume 3 hot dogs (no bun) a third of a plate of tater tots and a reasonable sized vegetable serving (it used to be very difficult to get him to eat plain vegetables!) in one meal. Another recent meal involved 13 fish sticks, another third of a plate of tater tots and fruit. As I mentioned in my last report, he had not been getting enough to eat due to a problem with a caregiver for a month or so during the summer. I believe that is responsible for a lb he lost over that time period. However, at a recent dr. visit we discovered that overall, he has gained nearly 4 lbs and nearly 3 inches in height during the last 4 months! He has been on the supplement for the last 3 1/2 months. Again I should note previously we’d have been lucky to see him gain 3 lbs in one YEAR!

Participant 024 – Female (7 Yrs, 6 Mon):

Day 34 – Eats large amounts of food! We are amazed.

Participant 106 – Female (2 Yrs, 8 Mon):

Day 45 – Appetite continues to be increased, wanting to eat much more than what I believe 2 yr olds typically eat. She will eat breakfast, and then about 40 min later when we are packing up the kids in the car, I always offer her a snack for the car ride and she ALWAYS eagerly eats whatever I give her. She then has ‘snack’ at school about an hour later and her teachers report that she always finishes all of her snacks (both AM and PM) and all of her lunch. In addition, I try to have something for her to eat on the ride home, even though they are usually giving her a snack when I come in to pick her up in the afternoon, and she always accepts whatever I have for her to eat.

Participant 054 – Female (4 Yrs, 7 Mon):

Day 56 – Appetite continues to be good. I thought perhaps there would be an ‘evening out’ effect after she had taken the supplement for a while, but her increased hunger has remained strong even after 2 months of taking the supplement.

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VII. Changes in Energy (371 Reports): 90 of 134 (67.2%) Improved

Participant 051 – Male (3 Yrs, 5 Mon):

Day 16 – We hadn’t noticed a change however we gave him the supplement late in the day yesterday instead of earlier. He had more energy than I’ve ever seen him with before. Bouncing off the walls but in a good way. 🙂

Participant 132 – Male (4 Yrs, 1 Mon):

Day 31 – Before the minerals, [Child] was the type of child that required a nap, typically within just a few hours of waking in the morning. Naps would normally last 2-3 hours. [Child] is taking seizure medication and we attributed some of this to the “may cause sleepiness” side effect of the medication. On day 1 of the minerals [Child] did not take a nap (odd, but it had happened before). On day 2 [Child] had an unusual increase in energy. The phrase, “Bouncing off the walls,” comes to mind in reflection. [Child] did not take a nap again until day 3 of the minerals but it was only for 45 minutes, which again, was untypical. His nap schedule has been very different since. He, now, typically does not take a nap every day. When he does take a nap it is later in the day and still for only 45-60 minutes. Quite a difference when compared to his before schedule. [Child]’s endurance when out walking with his walker also improved but I am only inclined to note this as a side note as I am not sure this was a direct reflection of the minerals. Before beginning the minerals [Child] had been on quite the developmental upwards spiral and began walking significantly more than he had in previous months. I am not sure if the improvements in endurance and energy levels while walking are a reflection of him walking more and gaining in said areas, the minerals or a combination of both. However, I felt it note worthy as it was an improvement. [Child] went from being able to walk the distance of half a frequented grocery store to being able to complete our shopping needs at 3 different stores in by the end of our two weeks on the minerals. A huge jump in endurance, energy and ability.

Participant 047 – Male (7 Mon):

Day 39 – Naps used to last 2 hrs 2x/day and now we’re lucky if he’ll sleep an hour at a time.

Participant 093 – Male (3 Yrs, 9 Mon):

Day 56 – Much more energy, constantly moving in walker, or crawling or cruising, loves to be busy and on the go. Less likely to nap. Sleeping well 11 hours a day.

Participant 073 – Male (2 Yrs, 3 Mon):

Day 58 – He used to take one nap for three hours that reduced to one hour.

Participant 053 – Female (7 Mon):

Day 10 – More energy, not as long of naps.

Participant 105 – Female (7 Yrs, 4 Mon):

Day 24 – She is able to walk all the way from the bus to her class without having to sit down. Her teacher said she even runs to the bus. This is new. She NEVER runs. She comes into class ready to do her work. She is not obstinate or defiant.

Participant 100 – Female (3 Yrs, 10 Mon):

Day 39 – Ball of energy now. I could tell she was growing because there were a few days all she wanted to do was sleep but now she is crawling around everywhere and walking faster with her walker.

Participant 074 – Female (6 Yrs, 1 Mon):

Day 40 – Her energy remains higher than before the supplement. She is ready to go go go all day, but so ready for bed at night. Sleeping GREAT and even sleeping in very late on the mornings I let her, which is a big change for her.

Participant 110 – Female (6 Yr, 11 Mon):

Day 49 – More active and less sedentary in the activities she chooses. Stamina is improved, we actually are using her adapted chair less often and only for excursions where we will be walking all day. We went to the mall and she walked the entire 2 hours we were there, with minimal breaks.

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VIII. Changes in Sensory Processing (271 Reports): 43 of 134 (32.1%) Improved

Participant 153 – Male (11 Yrs, 5 Mon):

Day 20 – [Child] is accepting foods that he would not/could not tolerate in the past. Yogurt is one and mashed potatoes in another. Also, oranges.

Participant 089 – Male (5 Yrs, 1 Mon):

Day 25 – Teachers noted a big changed in being able to handle loud sounds in the classroom. We have noted that he is much less fearful.

Participant 020 – Male (4 Yrs, 1 Mon):

Day 48 – We’ve had the biggest changes here! My son has always been sensitive to clothing. I had to remove tags, stick to softer fabrics, avoid clothing decoration that was stiff, etc. He’s always refused to wear jeans even though he’s asked to wear them, he always ended up taking them off because they bothered him so much. He’s now wearing jeans no problem for the first time ever! It’s like they are no big deal. He’s grown 2 inches and out of most of his clothes. I put new clothes the next size up in his drawers and I didn’t remove the tags. Not a single complaint. Just a month ago he was asking me to remove a tag from a new shirt he’d gotten, this is a recent and drastic change.

Participant 182 – Male (7 Yrs, 9 Mon):

Day 57 – Less stimming.

Participant 003 – Male (5 Yrs, 2 Mon):

Day 99 – Meltdowns are rare. He will still tell us when things are too loud (like several children yelling at once), but it doesn’t lead to a meltdown anymore. His proprioceptive and vestibular skills have improved dramatically. Having muscle gain and these new improved skills has enabled him to play and run and climb with his friends.

Participant 002 – Male (5 Yrs, 7 Mon):

Day 170 – He had a birthday party this weekend at Chuck-e-cheese, and it was a blast, with no problems with the noise (this is a big change for him) in such public, noisy place.

Participant 123 – Female (1 Yr, 5 Mon):

Day 38 – This is the best part next to her tone change. She was very startled by anything even a sneeze and would cry until i picked her up to console her. She is no longer doing this, if I sneeze and laugh at her she now laughs back. Amazing!

Participant 054 – Female (4 Yrs, 7 Mon):

Day 72 – She seems to be better at coping with new sensory environments and is very content. Lots of smiles and not many meltdowns anymore.

Participant 025 – Female (3 Yrs, 2 Mon):

Day 151 – Yes! Had a shower over holiday period after being at the beach. Used to HATE showers, but loved it this time and wouldn’t get out. Loves playing with piles of rocks, like Macca Pacca from “In the Night Garden” (a kids bedtime show we have here in Australia).

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