Good Reads

THERAPY NOTE 12/11 Worked with Landon in the classroom and therapy room. Landon was excited to see OT and crawled over to her. He did not want to stand much today. Positioned him on the little couch in the classroom and he was looking at a book. He was very interested, patting the book, and turning the pages. He turned 1-2 pages of the board book at a time. Positioned him in standing at a small table. Landon took all the toys out of the basket and threw them. In the therapy room, while positioned in standing, he took all the puzzle pieces out and threw them. Worked on walking back and forth to the therapy room with assist. Continue with IFSP goals.

Landon's OT Therapist said it best -- "Landon loves his books"!

Go Crocodile

The most precious gift any parent can receive is knowing your child has what HE/she needs.

Finally, after over 3 months of awaiting insurance verifications we have gotten our boys walker!!

This is by far the best Christmas gift ever!!!

Landon's Crocodile Gait Trainer

 

Momma's Standing Turkey

The day after Thanksgiving, while in New York, Landon, crawls out of the room and pulls himself up to the banister. (I''m running to grab my phone, gotta get this) 

My Turkey is checking things out!!!!

Ummm....yup, I did that!! 

He's checking out the pool scenery...

Maybe he's  thinking, "I wanna go down there"...

A for Applesauce

Landon gets an "A" for AWESOME job during Occupational Therapy today and self-feeding!!!!

THERAPY NOTE

Worked with Landon in the classroom during breakfast and free play. Landon was sitting at the table with his hands in the applesauce. Wiped off his hands and gave him his spoon back. He did hold the spoon with his right hand but did not initiate feeding self. After hand over hand several times, Landon was able to scoop his food and feed himself 4-5 bites on his own. He scooped the food and brought the spoon to his mouth. During playing, positioned him in standing while he engaged with toys on the shelf. He picked up instruments from the basket and shook them. He did not hold onto two instruments at the same time. Positioned him in sitting on the small chair with the cube in front with a panel cause and effect toy. He closed all the panels several times. He communicated consistently by touching OT's hand to indicate that he wanted all the panels to be re-opened multiple times. Landon did great today self feeding and communicating his needs through gestures. Continue with OT goals.

Walk Now for Autism--Team LRG

The day of the walk had finally arrived. And luckily it was a lovely day with perfect weather for walking. The event was amazing; it was such a great experience to be apart of something so common in our very own community. We noticed while fundraising and recruiting for our team how many people are touched by autism. Fortunately, we were blessed to have so many family and friends contribute by donating and/or joining us for the walk.

Team LRG raised over $1100.

Dad & I decided that we will participate yearly in the Autism Speaks Walk!!!

Team LRG - before the walk started...

Take 2 - halfway through...

Landon  literally cruised on through the finish line...

And were DONE - Team LRG!!!!



Team LRG's THANK YOU post via instagram!

Kennedy Krieger - Day 2 of 2

Day 2 arrived and this day was much longer. The first evaluation was assessed by the speech language pathologist and the last evaluation was assessed by the developmental pediatrician.

The speech language evaluation consisted on Landon interacting with the therapist to show how well he communicated. Upon entering this evaluation room, he appeared to act differently than he did on Day 1, but he proceeded with checking his surroundings and moved in-towards the therapist. The activities on this day included more fine finger grasping, self-feeding and how he feeds himself; showing signs and/or gestures to indicate he if wanted more. He also had to show interaction with a play baby and stuffed animals and imitating motions or faces made by the therapist. This evaluation ended with the therapist reviewing her testing scores by the Mullen Scale and sharing some recommendations.

Landon sitting in the evaluation room, awaiting the therapist to return.
 

Landon's favorite part of the day... EATING!! Lunch at Miss Shirley's.
Of course he isn't in picture mode, he's only ready to eat.

Upon our return back to the center after enjoying a nice lunch, Landon was triaged and had a slight physical evaluation before heading in for the last appointment of the day. Finally, we were called...

After a long intensive overview and evaluation assessed by the Dr., we were told there were definite visible red flags of autism. However she proceeded with assuring us all of Landon's delays where associated with the Kleefstra Syndrome. However she did mention this particular rare syndrome was very new to her but according to her research she was very confident there wasn’t a need to diagnose Landon with having autism. She did move forward with offering to continue assisting us with by helping us locate a pediatrician who specialized in rare genetic disorders to avoid any oversights that can be associated by this syndrome. She also requested to see Landon in one year for a follow up.

Dad & I left that appointment with such comfort and ease. We shared with her how we wished we would have come to the KKI sooner, especially considering we had become so frustrated with the back and forth we had experienced with Children's National Medical Center.

As for now, we're awaiting the final report from Kennedy Kriger and referrals for other pediatricians, meanwhile we are pleased knowing what direction we can move forward with continuing plan of care for Landon.

 

 

Kennedy Krieger Visit - Day 1 of 2

The first day consisted of an evaluation performed by an occupation therapist. The occupational therapy evaluation was completed to assess fine motor and gross motor coordination, visual perception and visual motor skills, self-care skills, sensory integration, motor planning and neuromotor skills.Upon entering the room with deemed lighting, filled with a small amount of toys, Landon immediately begin to observe his surroundings. He became engaged as she pulled different toys to his attention. He did activities such as releasing items into horizontal and verticle slots, and/or containers, cup stacking, scribbling on paper with hand over hand direction, and fine finger grasping. Eventually the evaluation was moved from this room to the therapy room where the therapist attempted to place Landon on the swing, which was made of a tire rim and rope, but he appeared to be uncomfortable with this and was removed back onto the floor. We then placed Landon into the ball pit where he immediately showed his interest by laughing out loud. The remainder of the evaluation continued with an electronic questioned based test for Dad and I to answer according to Landon's ability. We finished with the therapist reading and reviewing some of  her scores from the Mullen Scale for Early Learning. And last she voiced some recommendations and told us the conclusion of the evaluation will be based upon the next two evaluations to be done the following day.




Landon playing with his Dad the morning of our visit in the waiting area...

Landon having fun in the ball pit...

 

 

 

 

 

What is Kleestra Syndrome??

Introduction: Kleestra Syndrome is a rare genetic disorder where a tiny piece is missing one of the body’s 46 chromosomes. Its absence is known to cause major symptoms of the syndrome. It also carries many characteristic traits that most likely feature developmental delays, distinctive facial features, behavioral issues, learning disabilities or difficulties and hypotonia (low-muscle tone). Hypotonia causes a motor delay but most cases children walk independently by age 3. And most have moderate to severe intellectual disability with expressive speech delay or little speech development--nonverbal communication is possible.  Other common known features may include heart conditions, minor genital anomalies in males, sleep difficulties, slightly unusual hands; such as incurving fingers, possible kidney anomalies, and dental anomalies. Kleestra is also known to exhibit features of behavioral developments such as ADHD and/or Autism.

What causes Kleestra: Its said in most cases, both parents will have normal chromosomes. The chromosome break is then said to have occurred out of the blue. Most cases of Kleefstra syndrome are not inherited, however. The genetic change occurs most often as a random event during the formation of reproductive cells (eggs or sperm) or in early fetal development. Where both of the same parents have normal chromosomes, it is unlikely known that another child will be born with Kleefstra syndrome or any other chromosome disorder. However, it is highly recommended that both parents have a chromosome test, to possibly avoid bearing another child with any chromosome disorder(s).

Living with Kleefsta:  I have read that a child living with this rare genetic disorder is to have a well meant life, but just at a slower pace. Fortunately, the assistance, therapy and care received from doctors, therapists and support from family and friends make it easier to move forward.


For more information on Kleestra Syndrome, see links below.

http://kleefstrasyndrome.org/
http://www.rarechromo.org/information/Chromosome%20%209/Kleefstra%20Syndrome%20FTNW.pdf
 

 

 

 

 

Who is LANDON??

Ummm...where should I start??

Landon is a non-verbal 2 year old little silly, yet shy guy; who has a weird way of showing expressions. He's a goof-ball and full of laughter. He hates pictures but can sometimes be easily fooled for a smiling photo, however, recently he appears to enjoy having a photo taken only if the camera is reversed and he can see himself. Landon's favorite way of interacting is playing "clap-clap" and "row row row your boat". He doesn't show much interest in many kids his age, but he enjoys the company of his big sisters Anesia & Damari and his big cousins.

Landon has Hypotonia, Cerebellar Ataxia, he's G6PD Deficient, and was just diagnosed with a rare genetic condition called Kleefstra Syndrome; he also displays autistic traits. He will be going to a 2 day Autism Evaluation October 30th & 31st in Baltimore, MD, at The Kennedy Kriger Institute. In so many words, Landon may appear to look like a normal toddler with obvious developmental delays, but in reality he will require life long medical follow-ups for multiple issues.  

Currently, Landon attends Easter Seals Child Development Center in Washington, DC; a child care center who specializes in providing services for children with a variety developmental delays and /or special needs. He receives therapy services for Speech,Occupational and Physical Therapy. Landon also attends playgroups for families of infants & toddlers sponsored by the District of Columbia Early Intervention Strong Start Program.

I introduce you to LANDON.



Landon sitting in his new wagon, enjoying at day at the National Harbor.



Landon at school on the blacktop, having PT. He is strapped to a Gateway Trainer for walking assistance.

Update

Currently UNDER CONSTRUCTION!!!

.....stay tuned!

Intro

Why Blog??.... To educate and help other parents in my commnunity & siblings deal with accepting medical issues and/or developmental delays. Also to keep Landon's family and friends in touch with his world of progress, from doctors to doctors, choices & opinions, and to even continue educating ourselves, as his parents.

As the saying goes, "It Takes A Village To Raise A Child" - And this is OUR JOURNEY!

Welcome to Landon's Leap.