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She Loves Her Laser! (NKH)

So I’ve had my laser for about 2 weeks now and I guess it’s time to post a progress report to anyone new or thinking of trying it. Forgive me if it’s long winded but my daughter has a very rare condition, NKH and has a lot of weird and crazy aspects to her health and behaviours as a result of it. Lycine encephalopathy, also called non ketotic hyperglycinemia (NKH) but everyone mixes it up with non ketotic hypoglycemia which is basically diabetes. NKH is a terminal metabolic disorder where you can’t break down the amino acid glycine. There are about 500 to 1000 surviving cases worldwide but almost all are under 5. Me and Dorrie are incredibly lucky to have less affected kids with NKH but they are still very delayed, physically and mentally disabled, lots of medical issues and huge behavioral challenges.

Alice is 5 and although mentally about age 3, things like her fine and gross motor skill are probably even further behind. She can walk around the house and at school but uses a wheelchair for most things, she has lots of words but is difficult to understand, is 50/50 toilet trained (poos being abut 90% hit rate but wees not so much). Our big issues are actually psychological. Extreme anxiety, constant tantrums and screaming, raging OCD, aggression, self harm, hitting and biting of others, irrational freak outs and hissy fits over everything and nothing etc etc. She is also a terrible sleeper, waking several times a night and only sleeps through if sedated (it is a part of her condition so not unexpected) but can also wake with night terrors, tantrums, screaming fits and so on.

We only finished the protocol today as despite doing it daily I spent the first few days on just Prep and 1 to 10 to prepare her. I also went over Moro and FPR a few times before moving on as her fight or flight and anxiety was our biggest issue.

So what are my findings?
1/ She loves her laser! Someone on here called it a “Princess Laser” so I stole that idea and my god does it work. She asks for her Princess Laser daily and actually cries when we have to stop. She doesn’t sit still for it but she’s getting better.
2/ Biggest change would have to be mood. Her affection has skyrocketed as has her ability not to melt down. Falling over is now punctuated with “Ouch, I fell down” rather than an hour tantrum and she will finally accept a kiss or a hug to make it better. Stuff still upsets her but to a more “normal” level. Her mood in general is SO much happier and I’ve noticed lots of silly/fun behaviour rather than looking like she’s waiting for her opportunity to kill me!
3/ Verbally. Wow this has just gone nuts. So far no improvement in pronunciation but more words being used and putting more together. More use of “I” and “me” and “he” and “she” rather than talking of herself in a third person ie “Alice share Mummy” is now “I share with Mummy” and Alice did it” is now “it was me”.
4/Sleep. Not sure on this one. I think things are changing. She’s going off better than she used to but still waking a lot. She’s only slept through once in her live without sedation so it would be an effing miracle if we cracked this already but she is waking happier and less screaming on waking.
5/ Toilet training no change yet.
6/Gross and fine motor no change yet but she is asking to be carried less so I suspect although I can’t see a change she is feeling more stable.

Anyway so far it’s already been worth every cent and I cannot express enough how much we needed this. We were in a real mess, all drugs had failed (thankfully with hindsight) and with this and introducing CBD oil a few months back I am finally really and truly enjoying being with my daughter. Actually I forgot to add that she looks different! Its hard to explain but kids with my daughter’s condition can look a bit vacant or kinda gormless (god that sounds awful but I hope you
understand what I mean). Since the laser she just looks more “in there” like she more switched on and brighter.

Update: November 25, 2016
This is the Alice I adore. We have her back and better than ever. This is the girl fighting to be herself and when we get it right with treatments and medicines (or lack of), she is so damn awesome. Less meds than in her entire life, cannabis oil and daily home therapies using a cold light laser and a technique called Reflex Integration. Thanks Vanessa Hay for all her care and taking her to all these great places and thanks Bonnie Brandes for helping me learn the therapies. If we can keep this up she will rule the world.

Update: December 5, 2016

Alice continues to make great progress. It’s hard to fully explain how different she is. Not so much in skill yet but in behaviour mood and happiness. Its not an understatement to say its been “life changing.”

All our kids have different conditions but I am a firm believer that they are all “in there” somewhere, no matter how disabled. I’m so pleased you are finding your son. My daughter is about 6 weeks in and my god I love her. To be honest I wasn’t that keen on her before!!! I have the scars to prove it, quite literally. So happy for you, a head on your shoulder is priceless isnt it?

Update: December 6, 2016

Everything happens for a reason. Its all a big patchwork really and seeing what it has done for me and Dorrie’s son just makes me so hopeful for others, NKH has virtually no treatment options. The severe don’t make it out of toddlerhood and the mild often end up in homes due to aggression and self harm. Right now I have a very happy, funny, playful, sweet. loving child with a disability. A few months back I had a screaming, tantruming, self harming, vicious biting, scratching and angry child who clearly hated being her. I really hope this is a break for NKH parents. God knows we need it.

Update: December 7, 2016

Thought I’d share a more few great things I’ve seen since laser. Now I fully appreciate some would have happened any way and I also feel a lot of the reason we are developing faster is because we are no longer constantly melting down or screaming and tantruming. However without the laser the endless meltdowns and aggression and OCD etc would not have stopped so either way, the laser is at the core of this.
1/ Alice put on her first item on clothing 100% unassisted. A pair of shorts.
2/ She said her longest sentence yet “Look Mummy Christmas lights, I show you. Santa. Not yet”
3/ Instead of trying to kill and maim me she says I’m “her Honey” that she loves me “one hundred million and sixty eight” , that I’m “a good Mummy” that I’m “a princess” and that she “misses me so much”. Now we have had bits like this in the past but only when shes having a good day and not all at once. I know get this all day.
4/ She walks around counting to 15. Again she used to do this but I haven’t heard it in over a year.

This is all on top of the HUGE improvements in mood and behaviour. Interested though has anyone had detox symptoms in the form of an upset tummy? We seem to be getting a lot of big “evacuations” for want of a better word!

Update: December 19, 2016

I’m 1000% happy with my laser. Life changing beyond my wildest expectations. My daughter is not DS but CP, GDD, ADHD, OCD, Self harm, aggression, anxiety and so much more. Three months ago she was satan and foster care was even on the table. Today I cannot put her down, I love love love her so much and if her condition doesn’t end her life early it will be my relentless kissing.

All our kids have different conditions but I am a firm believer that they are all “in there” somewhere, no matter how disabled. I’m so pleased you are finding Eric. My daughter is about 6 weeks in and my god I love her. To be honest I wasn’t that keen on her before!!! I have the scars to prove it, quite literally. So happy for you, a head on your shoulder is priceless isnt it?

Everything happens for a reason. Its all a big patchwork really and seeing what it has done for me and Dorrie’s son just make me so helpful for others, NKH has virtually no treatment options. The severe don’t make it out of toddlerhood and the mild often end up in homes due to aggression and self harm. Right now I have a very happy, funny, playful, sweet. loving child with a disability. A few months back I had a screaming, tantruming, self harming, vicious biting, scratching and angry child who clearly hated being her. I really hope this is a break for NKH parents. God knows we need it.

Update: December 27, 2016

Leaving the house before laser:

“Nooo Mummy no go, no go NO GO!!! Cuddle, cuddle, cuddle, no doctors, sing twinkle, no doctors, i so sorry, i so sorry, Mummy sing twinkle, no go, no go!!!!!….”

Leaving the house after laser:

Bye Mummy.

QRI, Now He’s a Total Chatterbox!

QRI Update: October 18, 2016

QRI, Now He’s A Total Chatterbox! Okay so it’s hard to explain some of this stuff because it’s about just “knowing” my son. But this morning he woke up a TOTAL chatterbox. I mean, he’s always been verbal (albeit often near-impossible to understand). But this morning was much different. I opened the front door to get the newspaper, and he was so observant, “Mom, look! A spider! Mom! Look! The MOON!” (which was still nearly full land so big in our morning sky even as the sun was coming up. His speech was just subtly clearer and his sentences more formed. “Mom, where’s dad?” instead of just “Dad?” and when I was telling him to come sit-down to eat, he got angry and said, “Mom, stop it! I have to go potty!” and then proceeded to do so including closing the lid, flushing and washing hands which I usually have to remind him to do verbally – if not help him with (in his less complaint moments). When his dad woke up, “Dad! There you are!” and when he was driving me nuts, I said, “Go sit on the floor and work on your puzzle please.” He stomped to his puzzle and said, “No, I’m cleaning up!” and he put the puzzle away and just looked at me as if challenging me to defy him. (that’s pretty normal actually LOL). But the LANGUAGE instead of just using his body to pitch a fit!” His father was trying to feed him his applesauce w supplements and instead of just pushing the spoon away or slinking away from his chair, he said, “No dad. Stop it. I want mommy.” When doing his reading homework, he was NOTICING when he was turning more than one page at a time and he corrected himself. For the first time ever, I left him alone to do his reading book at the table and he did the entire book A-Z on his own (generally I have had to be right next to him to keep him attending). There’s just something profoundly more integrated – overall- about him.

Hands Grasping makes me bonkers. BUT this will keep me motivated. LOOK at how he’s holding his fork.

I want to add that the one thing I’m bringing to these sessions now that I had not been bringing to anything that I’ve done with Alex for many years is this: I pray to his angels and to other beings who I know support us and I say, “I cannot do this alone. I can hold the laser. I can breathe. But I need you. Alex needs you. I’m showing up and doing my part, now you do what you will” and various forms of that prayer. I am not a religious person but a very spiritual one and looking more demandingly to Alex’s angels and others to take the reins (which means, I have to let them go) has been huge in our day-to-day since I have come back from my two week “Escape” from life a month ago. Just wanted to offer that because I know I’m not the only mom here who feels the weight of the world on her shoulders sometimes. And lately, being on my knees asking for help has been a huge pathway to breakthroughs that are profound although difficult to articulate. I realize that Alex’s birth put me on a major crisis of faith journey. And it seems also, that he is demanding that I resolve and restore much of what had to fall apart in order to be rebuilt.

Long But Worth the Read!

9/21/16

Long but worth the read! We’ve been desperately trying to help our 8 year old with Down syndrome and Ehlers Danlos syndrome (faulty collagen) with her declining gross motor skills over the past couple of years. When she was younger she could run around for 45 minutes at a time no problem. Last week I found a medical document from 2 years ago that said she was *only* able to walk up to 10 minutes without needing a break and I cried because most recently (past 1.5 years) we were down to 1-2 minutes MAX that she could walk without grabbing her legs in pain, asking to be picked up, or kissing her legs saying she had boo boos. We’ve been to SO many specialists, doctors, physical therapy and nobody has been able to help. She had tethered cord release surgery and a spinal fluid leak about 1.5 years ago and things continued to go downhill from there. She was fitted for a wheelchair last winter and we could not go anywhere without her wheelchair or stroller. She could play on playgrounds okay because she could take many breaks, but walking more than a few minutes…it just wasn’t possible for her. Her fatigue is debilitating and at 8 years old still naps every single day to make it through the day. Anyways….in addition to all of those issues she has major sensory dysfunction (sound sensitivity, fight/flight response often, sensory defensiveness, etc.), anxiety and PTSD from her time in an Eastern European orphanage….we ended up pulling her out of her half day modified school day a year ago to homeschool her because her quality of life was just declining and she couldn’t make it through half a day due to fatigue and anxiety. Dr Sheehan kept mentioning light therapy and how helpful it would be and then I heard about this group. Devastated to learn the cost of the laser, my husband and I kept praying. We had spent so much money on therapies that DID NOT WORK that we were afraid to take such a huge risky leap….we decided to take a leap of faith (and a loan haha) and purchase the laser. I’ve been working with her for 5 nights now and today I believe I’ve seen a miracle! Our girl not only walked but walked/ran 3/4 of a mile without stopping!!!!!!!!!! Last night she was running around outside in a way that made me cautiously curious and then last night and this morning she was able to walk up and down our stairs without holding on to the wall or railing….she has never been able to do this and most recently could not even walk down one step at our front door without holding on. She’s always slid down the stairs on her butt. I keep having this feeling that I’m going to wake up tomorrow and it’ll all have been a dream. We’ve not seen huge sensory changes yet but we’re only 5 days in and what we HAVE seen is enough to make me a believer. We pray every night when we get started with the laser and that has been a big part of it, too, I believe. We are praising God! I will try to upload some videos in the comments section.

Update: 10/12/16

We just got back from my daughter’s Make-A-Wish Trip to Disney World. I took the laser with us, but we were so busy (and mama needed a break, too) so I didn’t do anything other than run CMT during her naps. She declined quite a bit gross-motor wise. For those who didn’t read my last post she had Ehlers-Danlos Syndrome and DS with some other undiagnosed muscle/movement issues. We saw huge motor improvements within the first 2 weeks of using the laser. She uses a wheelchair for anything more than a couple minutes, or I guess I should say USED (I’m thinking we will still need the chair for long walks/community outings, at least for now but am hopeful we will make even more progress)! She is up to almost being able to walk a mile pretty consistently since using the laser! Anyways, she declined on our trip and I was so sad…on the last two days I added in some laser time (just moro and FPR) and saw some improvements, but still was not back to how great it had been when we were doing the laser more full-time. Since being home I’ve done 3 sessions with her (totaling one complete protocol with the new T21 additions). She blew me away today!!!!! We still have a long ways to go, but this kid has never galloped in her life….she has an emerging gallop today, her balance was so awful she couldn’t even step down one stair, let alone step over a high chain without holding on!!! And she has NEVER forward jumped like this before!!!! And RUNNING?????!!! Like running so fast I had to run to keep up with her? Also new!! To some of you it may not look like much compared to your children with better gross motor skills but keep in mind where she was starting! Unreal!

Some other differences we saw when we took the laser-break were: increased fatigue-she was back to her pre-laser levels of fatigue, and increased stuttering which made me realize how much the stuttering has gone away since using the laser and QRI protocol! She is just HAPPIER, as well, when we use the laser!!! So thankful for QRI!!!

Update: 10/17/16

We’ve been seeing some additional positive changes (additional to all the amazing gross motor and pain reduction) since we started using the T21 portion of the protocol…I believe the basal ganglia piece is huge for our daughter! Every time I do the basal ganglia portion she falls asleep. Her speech and language is showing improvements….she used to have bouts of stuttering that came along with her increased pain and fatigue and now it is so rare to hear her stutter that when she does I stop to notice how good it HAS BEEN since the laser! She is much more articulate and stringing together more complex sentences. Before the laser she was speaking in 4-7 word sentences and that has increased! Her reading fluency is AMAZING now and her ability to recite a sentence (or the pledge of allegiance, for example) has grown! It seems with her speech she is now using all parts of a sentence more frequently (i.e. “Can I go to the store with Dad?” instead of “store with dad?”). A few hours after she got home from a morning out with Dad she told me, “I went to the beach with dad and put my toes in the water. It was cold!”

I was impressed not only with the sentence structure but also that several hours later she was relaying the story to me. Cognitively she seems sharper. She will mention parts of a conversation that she was eavesdropping on and it makes me laugh…I need to be more careful now I guess 😉 Her fine motor skills seem to be improving as well since she was able to buckle her 5 point harness completely on her own and figured out one of our door locks which has been on the door for 2 years LOL! My husband took her to the beach this morning and he said she just seemed so FREE…she wasn’t anxious about the wind, or flies, or sand in her shoes as she normally is! The anxiety has been the slowest part to come along so far, but we only started QRI about a month ago, so I still think what we’ve seen has been phenomenal!! Oh and one other thing is that people who don’t know we are doing the laser are noticing a difference in her appearance….she even LOOKS more confident and happier…so awesome!

Update: 10/20/16

I can’t say enough how thankful I am for QRI!!!! My daughter looked at the laser on the counter this morning and said, “The laser helps you. Laser is my favorite!” <3 <3 <3 I could cry, seriously, because up until QRI we tried so hard to help her pain and all the “experts” agreed that aqua therapy and meds were our best choice….she complained about pain after half of her aqua therapy sessions but tried her hardest because we asked her to, and the meds hurt her tummy more than they helped her pain. When your child tells you something is working after years of feeling like a failure….well there’s no better way to start your day, that’s for sure!!!!! She KNOWS and FEELS how it is helping her!!!!! Thank you Bonnie Brandes!!!!

Update: 11/10/16

This kid has never allowed band aids to be placed on her….she’s had bloodwork probably 100 times and freaks out every time they’ve tried to put a bandaid on her. I couldn’t believe she let them put two bandaids on! My husband said the phlebotomist (who has been drawing her blood for a while) commented about “how far she’s come.” She couldn’t get blood from the right arm so she moved to the left and had to dig around a bit and my husband said Zoya just calmly said, “that hurts.” She recently got a service dog and that helped with her overall calm level for sure…but the band aid thing, and being able to calmly articulate that she was in pain without going from 0 to 60!!!! And the fact that the phlebotomist noticed a marked change in her! I truly think the basal ganglia piece has been very helpful for her!! In this picture she is making this face because I was going crazy about how great she did and she was so proud and even a little surprised with herself I think!

Oliver Can Walk Now!!

June 5, 2016 I got my cold laser today and was able to do the whole program minus 2 to Oliver while he took his nap! Excited! He slept for 2 hours which is unusual for him. I wonder if the laser calmed him. I did have the CMT on low so there was a little noise.

Update: June 20, 2016

Uhhhhhh…. I feel like I’m hallucinating or making this up but… OLIVER CAN WALK NOW!!! 4 days with the cold laser! He actually took two steps 2 days ago, but it was too shocking for my brain to process, but it’s for real!!! He’ll be 3 years old next month.
I did an hour session every day for 4 days (now 5, I just did another one) I’m slow so I did 9-12 points a day plus the opening and closing sequences. All while he was asleep except day 1 did do it when he was awake and one day I did a couple more while he was awake after I had been working on him during his nap

In addition to cerebral palsy, Oliver has PTSD (they called it PTSE for Experience). The PTSD wreaks havoc on reflexes.

Update: June 23, 2016

You guys!!!!! I have before and after videos of Oliver going up the stairs!!! The first one in the red shirt is from Saturday. (You can see his fisted hands and that he had to use his head to help him get up the stairs.) And the second one I just took! He’s never walked up stairs before
or even tried but today he practically ran up the stairs squealing with delight the whole time!!!!

The video (wearing a gray shirt in the comments) is when I asked him to do it again for Daddy. (The first time was more stable with more alternating of feet but still!!) I’ll post this on my page in case you can’t share it here…. Monumental difference in 5 days!!!!!

Update: June 23, 2016

Guess what soon-to-be-3-year-old child w/PTSD slept by himself last night for the first time! Just 3 months ago (before he started CBD oil), I had to hold him chest to chest and he’d say “Mom?” about 300 times before he’d fall asleep. CBD oil slowly helped w/that until he was able to sleep next to me w/only asking “Mom?” a couple of times. And now, the cold laser therapy has gotten him in his own bed!! Needless to say, Daddy is very happy. Here’s Oliver just waking up this morning in his new Lightening McQueen bed that he got as an early birthday present. (I did sit next to the bed until he fell asleep.)

Update: June 29, 2016

More proof that the laser is helping w/the PTSD: Oliver was able to watch Finding Nemo without freaking out! If any of you know PTSD, you know what I mean. Any bit of stress (a door not closing on a toy, not being able to break off a piece of bread, any scene in a show that has any sort of stressful situation etc.) could send a child w/PTSD into your arms howling and it takes an unusual amount of time for them to recover. Well, Oliver watched about half of it and was next to Daddy who said things like, “His Daddy will find him” and “They are smart they won’t get hurt.” “That fish is just hungry” etc. Sooo nice…

Update: July 1, 2016

Yay! Here’s Oliver’s newest trick! I have NOT done the hands grasping but one time because I need someone to help me and another someone to watch Jett. Hopefully I’ll be able to do it so he can really use his hands! So this is without hands grasping. (The duct tape is Grandpa’s touch.)

Update: August 23, 2016

Oliver playing with new friend, Jaylen. I was afraid to have kids his age over because Oliver was so unsteady. Now I’m more confident after laser treatments. He was thrilled to get to finally get to play with a boy his own age!

Update: Sept 11, 2016

I asked the in laws to make Oliver (has cerebral palsy) a handled step stool so he could be a little more independent on the potty. They did a great job! He loves it and can use it! We just got it recently and just now, Oliver asked to WALK DOWN the stairs!!! The real stairs–full flight–and he did it–alternating feet no less! Of course I held on to him the whole time, but this kid is fearless, determined and progressing!!! We had painfully slow, minute progress before the laser!! Astounding!!

Update: November 19, 2016

Oliver is getting more independent by the day! Here, he’s getting out of a chair and walking. He couldn’t even sit in a chair unattended before the laser!
And we recently took him to an orthopedic doctor and Oliver has been downgraded from Moderate CP to Mild CP. (I always said “mild” until I looked up the definition… to my dismay, he actually had moderate CP. Fortunately I found out after he’d jumped a level!) His hips look great and they were blown away by his overall flexibility.

I told them all about the laser and other therapies that have helped along the way. They had heard of none of them and agreed to review the research I send them. So, although they won’t be able to help Oliver in any way unless I’m interested in surgery, hopefully this dialogue will help them to help others.

Abi, Nothing Short of Miraculous Progress!!

July 14, 2016

Okay…..so I’m one of the first 10 folks to get a Harmonic laser on this FB board, but really didn’t use it regularly on my girl till last Monday….Now……
1) Abi did not cry even though there was loud clapping between acts at her school talent show today (she usually gets startled at sudden loud noises)
2) For the first time ever…, she actually finished a routine with one of the therapists sitting by the door of her school (we walk past this therapist sitting in the same spot almost every day, and I’ve seen them do this routine a million times but first time Abi finished the sentence) 😳😂👏👍🏻😱
3) As I lasered her while she watched “Tangled” the Disney movie after school today, she sang out loud all the words to the opening song “When will my Life begin”
4) When engineer hubby got home, I asked him “What changes have u noticed in Abi since I started lasering her? His response was “quicker cognitive response, more back and forth conv” and I have to agree with him!!!
Now I’m really motivated!
May have to wake myself and Abi up earlier everyday to sneak in a session before school!

Update: July 25th 2016

….the changes we have seen in Abi is nothing short of miraculous. Thank you Bonnie Brandes for coming up with this awesome home reflex integration program! As I was lasering Abi yesterday afternoon, I just realized, this is getting easier and faster! I even used the spiro with her! Woot!

BACKGROUND
As I mentioned before …..we embarked on this journey with QRI because Abi was really behind on fine and gross motor (for example not meeting a single OT goal over a five months period at the special school she attends…they have group therapy there). I first heard about QRI when a friend bought one last year, then this year at an OT eval at Solaris Pediatric Therapy Center, the owner Yulene, suggested QRI as part of the the treatment plan for Abi as almost all of Abigail’s reflexes were not integrated. But at that time we didn’t have the insurance coverage or the resources to do anything about it. So when Robin or Andi, my T21 warrior mama friend started this board, I was all over this.

Abigail is a cognitive SUPERSTAR (at three she has vocabulary of over 500 words, at least…can read, but functional language and articulation is not quite there), has a diagnosis of Trisomy 21 and Growth Hormone Deficiency…so pretty severe hypotonia, poor core strength. She walked, but not steadily; and OT, well, didn’t meet a single OT goal set by her school from Jan to May this year.

We are about 3 weeks into regular once a day home QRI program….the changes we (my husband and I) have noticed
1) immediately (within a couple of days) were better SLEEP!
2) after about a week or two…….quicker cognitive response (more banter, pretend play, initiative)
3) Elongated sentences (Abi’s speech therapist whom we have not seen for a while pointed that out to us. When speaking into the “telephone” instead of saying “hello, Duke?”….she goes “Hello Duke? xxxx xxxx xxxx xxxx xxx xxxx xxx xxx xxx” She has a lot she wants to say these days!
4) Within the last week, we have also noticed stronger upper body strength, esp her grip (I used to be able to yank the Ipad away from her, now I have to pry her fingers open! Lol)
5)Better brain/muscle coordination…..her sense of rhythm is now visible..able to clap and “play” piano according to cadence (I have posted a couple of videos on this board scroll through to see them)

Now, Thanks to new insurance coverage…..we will now be able to start regular OT/SLP clinical therapy this week in addition to the QRI program we are doing at home

Yulene Brussard, (OTR, owner of Solaris Pediatric Therapy Center) and her (SLP) wrote very detailed evaluations on Abi way back in early March when I commissioned the private evaluations as I was looking for grants/funding to help my child.

When Yulene Broussard and Christine Fritsche have the time…I would love for them (and give them permission to) to share with you their observations.

I would love for them to share the changes they have seen in Abigail last week (after they have not seen her for a while)…
and the changes after Abi receives a month or two of clinical treatment from them, in conjunction with the QRI program I am doing with Abigail at home.
The awesome Rosemary (OTR) also met Abi couple of weeks ago and will see Abi again end of Sept.

I am putting myself out there, sharing our journey here, cos
1) I’m paying it forward…hope that our story with help another family.
2) I don’t have a blog (no time and no skillz!).
3) I am in a unique situation where I have three very experienced therapists on my team, and a full MNRI eval of my child couple of months before we started QRI.

QRI is new to our very experienced and awesome SLP Christine, but two of not just Houston’s, but the the world’s most experienced QRI practitioners are guiding me through this journey.
Rosemary Slade and Yulene Broussard are one of the first OTs to be certified in QRI. I will also be attending the three day training that QRI founder, Bonnie Brandes is hosting in Dallas in a couple of weeks.

So keep your eyes on this thread. We will update on Abigail’s progress over time!

Update: July 25,2016

MIRACLE!!! From being a girl who just about a month ago was hypersensitive to touch and loud noise …..to enjoying 5 mins pick up and drop off all this week at a weeklong VBS camp (not our home church….a facility, people that are new to us but who wanted my daughter there!) and

*DRUMROLL*…..this girl fell backwards at PT this afternoon from a 3 inch high mat and instinctively reached her palms behind her, near to where her booty is, to break the fall!!!!!!
THIS HAS NEVER HAPPENED BEFORE !!!!!! QRI You’all!!

Oh! So this is what integrated reflex looks like!! This mama’s heart is full!!!!!!
I’m sold! We are starting to see the physical changes…..the good sleep pattern, increase in cognition, imaginative play, desire to socialize…..that’s all just bonus that I was not expecting when I bought the laser!!!!

Thank you Bonnie Brandes for inventing this concept and Yulene Broussard for bringing this mind-blowing home program to our attention! Can’t wait to see how QRI Talk will help my girl!!!!

Update: August 20, 2016

Look what just happened yesterday evening!!
You’all, less than 2 weeks ago Abi had no idea how to go down a flight of stairs. This is unreal!!! It’s not perfect but looks like we are on the accelerated track!!! Abi had weekly traditional PT for a year, was fired from Aquatics PT therapy in May for being “too uncoordinated”…5 weeks of QRI and 3 OT sessions with Yulene and her team…Boom!

Update: October 21, 2016

This is the same child, whom we were told back in May by her preschool “It was like we lost Abigail. She was not participating in circle. Like she forgot every routine we ever learned”, had no hip flexion back then…..Fast forward…started QRI in June, once a week OT in late July/Aug, she’s had 3 Yoga sessions with Yulene Brussard this last month…and yesterday ….my girl walks into a room full of adult strangers at 4pm…..after 6 hours at school, after an hour of OT, and followed instructions to do Yoga for 25 -30 mins from someone she’s never met before! She killed it and slayed everyone in that room! 3.5 years old you’all! Her focus was soooo impressive these OTs who were at the location for their Yoga certification (whom I don’t know) made sure to come downstairs and find me to tell me how AMAZED they r with my child’s focus and attention! Here’s a link to a two minute snippet of Abi doing Yoga with Kathy Randolph, trainer for Yoga For The Special Child.
And in comments link to what the super nice stranger OTs said to me! Made me cry! My mama’s heart is so full!! (we don’t know them…not sure if they travelled out of state to take this course…Abigail was a “demo” student for their practicing observation)

Update: October 31, 2016

Another anecdotal observation…so since my daughter started preschool 2 years ago, we pretty much had to give her antibiotics every 6-8 weeks to fight the preschool cootie snort …before it turns into bronchitis or something. I guess that just happens when u go to preschool.
My hubby (praise the lord!) has in the last year taken over “snort sucking” duties from me. He uses a baby nose comfy to suck the snort out of Abi’s Nose. He just commented to me yesterday…I haven’t had to suck snort from Abigail since she started preschool this fall. That is true folks! The only thing we have done diff is the QRI which does work at a cellular level to regenerate cells? Could this be a reason for no antibiotics since starting school in late August? I hope so! Fingers crossed! 10/31

Update: November 10, 2016

…Hmmmmm…..let’s see, where to start?

How about the fact my daughter was “fired” from Aquatic Therapy PT Pgm cos PT said she was “too uncoordinated” back in May.
How about the fact my 3.5 year old Abi did not know how to walk down stairs at all back in May, maybe even June?
And now, about 4 months into QRI, (Quantum Reflex Integration) Home Program, she is not only walking down the stairs (with assistance) she is singing and articulating clearly the words to the “Do Re Me” song from Sound of Music soundtrack, while walking down the stairs!! I think her cadence and rhythm was pretty on point too!! I call that a MIRACLE and a WIN!!!!
Thank u Bonnie Brandes, Yulene Brussard, and Rosemary slade!

Update: November 11, 2016

QRI works you’all!!! Here’s an Abi update

First, Abi just had her primitive reflexes re-assessed by her OTs, Yulene Broussard and Diana Dang (Solaris Pediatric Therapy in Houston, TX) and a lot of her reflexes are still not integrated but many are no longer hypersensitive.
We have seen so much other gains in socialization, speech and physical since starting QRI in June/July, that I thought, wow, if her reflexes are not yet integrated and we have already seen so many improvements, can’t wait to see what else is to come when she is fully integrated! We are in this for the long haul!

While Abi was evaluated in march 2016, we did not have the insurance for clinical OT with Solaris until August 2016. I bought the QRI laser in June and started the home program in late June/early July)

Second, I want to share that I haven’t been consistent with Abi’s Home QRI program last couple of weeks; and her therapists at Solaris and I noticed her attention span was off last week. I worked hard over the weekend giving her half a session on Sat, half a session on Monday & BG, we skipped Tues, and I gave her a full QRI session yesterday (we only do half the reps for each pattern cos she is only 3.5) and today, when I picked Abigail up from pre-school, the first thing her teacher said to me was “Abigail was very attentive to all our activities today!”

Then I drove from school to Solaris and when I returned to pick her up, the SLP there who co-treats with OT asked me….”what did u do different? She is very attentive today!” Coincidence? I think NOT!

I said, it must be cos I was actually consistent with QRI this last week!
So, I am very encouraged and I hope our story can help someone here too! Press on mamas! And take time for self care and integrate yourselves too!! Xoxo

Update: November 18, 2016

From Diana Dang, Abi’s OT

We did Abigail’s initial evaluation in March and have seen so many changes since! If I moved closer to her in March, she would move away. She did not let anyone touch her and now she does not stop giving me hugs (which is fine by me!). She use to walk with an extremely wide base of support, legs circling with each step, hands held up in high regard and with that, she fell/tripped a lot. Now she’s able to walk with a more narrow base of support, hands semi at her side and walks across mats (sometimes falling but not as much) and even down the stairs! In August, she needed a lot of help going down the stairs and max cueing (sometimes hand over hand assistance) to use the hand rail and now she can go down with one hand held for support and hold onto the rail! When laying in prone (on tummy) Abigail use to have her legs abducted out to the side at 90 degrees due to her low tone. Since starting QRI she can lay with her legs nearly fully extended. Her attention is on the rise! We completed the Peabody reassessment in 30 minutes a couple of weeks ago. Every time she walked away during, she came back when I asked! Abigail sings a lot! More back and forth communication during our session and she’s highly receptive if I sing her actions into songs. For example: sing- we’re putting on our shoes …… and she’ll lift up her leg to put it on and help with the fasteners!

These are only a few of the many differences we’ve seen in Abi. I definitely agree with Chermaine about doing the laser consistently and seeing the results in person!

Update: November 27, 2016
Hubby says to me in kitchen (I’ve been working away in my home office) “So did you hear her crying?
Me: Huh? No?”
Hubby said, “Neither did I.”
So I give him …..THE LOOK…😡😡😡 like what OMG! What happened with my daughter when she was with YOU upstairs???
Me (yelling): “What happened? She fell down and we both didn’t hear her?!!!!!!!!”
Hubby: “No, no, I CUT HER HAIR AND SHE DIDN”T MAKE A PEEP, NO FUSSING, NO CRYING, didn’t shake her head, was just fine with the whole thing.”
Me: “Oh!! …I think someone on the QRI board was talking about looking forward to no trauma haircuts. I better post this little victory to encourage somebody!!”

Update: December 19, 2016

I spoke with an integrative doctor who has a QRI and access to level 3 or 4 lasers that chiropractors use. She ran same reflex integration protocols on kiddos with QRI and also the more expensive lasers …..and after six sessions ….difference that showed up in a brain scan was from using QRI. The parents of her patients (most with ASD) saw a diff in their kiddos in behavior with QRI but not with the other laser. This doctor told me…there is something about the CMT that is making a huge difference.

Isla’s Impressive Progress after 3 Days!

I just want to share our experience with the laser on my soon to be 4 year old little girl. It’s pretty impressive as we are very new to it. I have been running the CMT every chance I get and all night and in 3 days have completed all reflexes and T21 protocol 2x. Here’s what we have noticed:
1. Way, way more expressed emotions! Giggling, making funny noises. Happy, happy, happy (and people are noticing “wow Isla you are in such a good mood”). On the other end some very frustrated emotions. For example I put her snack in the wrong bowl and full on tears, on the floor meltdown. She has never done this and both my other kids did so I am fully embracing this “typical stage”. Also insisting on wearing certain clothes, bringing toys in the car etc.
2. Speech! More words and putting together some little phrases.
3. More thumb sucking. Sigh
4. More energy, Isla doesn’t love going for walks, brachiation etc but shes running around the house and asking to brachiate.
5. We went through an automatic car wash and NO TEARS!
6. Telling us she has to pee. Yay!
7. Just overall a more present, spunky, loving little girl.
This picture is Isla pretending to eat the fries (her favourite) on the store front window of a fast food place. Little funny things like that coming out of her all day. ☺️
**Bonus I wasn’t expecting….I have been listening to the cmt pretty much all day too and I feel so much more grounded. Less overwhelmed (for the first time in 4 years) and relaxed.
I am so grateful to Bonnie Brandes and all of you who brought this to the attention of us moms. xxx
More to come………….

Update: I am beyond thrilled! My girl just WALKED through a 1 hour Costco shopping trip. No wandering, no sitting and refusing to get up. She was enjoying helping me grab things, so happy and never left my side. This has never happened before. For those of you with kids with T21 you get how amazing this is 🙌🏻
In the last week I have also noticed her art work is becoming less scribble messy and more deliberate like she is actually visualizing something. **Picture is of her painting from 2 weeks ago and one from yesterday.
Also she is now able to open round doorknobs. She lets our puppy outside
And more speech!!!
All this change is over 1 week.
As others have mentioned it is like you want to pinch yourself. I am so grateful to have this type of therapy. Xxx

Update: Oooooh this is a big one for us! Our chiropractor asked Isla what she was for Halloween and she responded

“Halloween Isla Doc” (Mcstuffins a Disney character). This is huge because 1) she never answers questions and 2) she does NOT put 3 words together. We celebrate the very rare time Isla puts 2 words together.
I have added in Basal Ganglia almost daily and completed QRI Talk yesterday. There is so much so speech today and I can make out little phrases!!!