Please help us support a beautiful three-year-old girl name Kalianna Raye Trujillo! Kalianna was formally diagnosed with a developmental & intellectual delay. She was also diagnosed Level 3 Autistic.  She is non-verbal. Any proceeds will go to covering ABA therpy, Speech therapy, Occupational therapy, Physical therapy, Medical co pays. Kalianna see's a ENT specialist frequently, Neurologist every 2 months, and Rady's feeding team. Blood work is often required because she is anemic due to lack of nutrition from her food adversions. We also have often unexpected doctors and ER due to self harm. We are looking into private transportation so Kalianna can be taken to and from preschool. Where she will receive her Speech & Occupation therapy and then to daycare. We are also looking into medical equipment and speech apps that have been denied by our insurance as it is not "necessary." We are in a gray area of making just above the limit for any government or financial assistance. We are also in the middle ground of no longer having services with the Regional center and not yet with the School district. During this time, all expenses will be out of pocket. While San Diego is absolutely not cheap, San Diego is one of the top places to provide the best services for my daughter. 

Any help is appreciated! Below is the long version of journey so far. If you have any questions or need help getting your child services please feel free to reach out! Early intervention is key to helping our children. 

In 2020, the CDC reported that approximately 1 in 54 children in the U.S. is diagnosed with an autism spectrum disorder (ASD), according to 2016 data. Boys are four times more likely to be diagnosed with autism than girls.

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Kalianna Raye Trujillo was born Feb. 2nd 2018. She was born premature at 35 weeks old with worries of a stillbirth. After an emergency c section Kalianna was taken to Sharp Mary Birch NICU where we stayed for a couple of weeks. Her lungs being undeveloped and she had significant weight loss.  Kalianna was released and went home a HAPPY baby! She hit every mile stone early!

Around 13 months, Kalianna started to regress. She went from saying a few words to none at all. She went from eating what was put on her plate to pretty much surviving off milk alone. She started showing signs of frustration, isolation and didn't respond to her name. She was evaluated at 13 months old with SDRC and we started in home therapies.

Then at 18 months she was evaluated by a specialist through Rady's children hospital. It is extensive. 3 hours long. 4 extremely thorough and long questionnaires. She was diagnosed with a Global Development Delay. At a year and 6 months old. Kali's receptive language was of a 4 month old. Expressive communication of a 11 month old. Fine motor skills of a 12 month old and Gross motor skills of a 15 month old. It was clear she was behind her peers. She was high at risk for autism but they advised they wanted to wait until she was older before diagnosing her.

So the therapies increased. Speech, occupational, physical, feeding team of specialists, ABA therapy 3 x times a week. Doing almost 30 to 35 hours a week (part time job) of therapies on top of working a full time job. She has been sedated twice for two MRI's, had an EEG performed, Surgery for Ear tubes and her adenoids to be shaved down. She is 3 and been under anesthesia 3 times We meet with her Neurologist every 2 months. She became to much to handle for her babysitter and a daycare. Which was understandable. She has grown leaps and bounds at her current daycare (Thomsen Learning Center) and I'm so very proud of her!

However, Kalianna is becoming more aggressive. I believe it is from lack of communication and frustration. We are both covered in cuts, scratches and bruises. There is hair pulling, eye poking, and head banging.  She doesn't feel pain. She has slammed her head intentionally so hard on the concrete I was advised to take her to the ER.

Ben and I took her to the follow up 3 year evaluation. We went through the same extensive process. This time way more we were way more prepared than the first time we went in. I knew Kalianna was going to be diagnosed autistic. I've known it from day one with the Regional Center. However, as a parent you hold hope that all of your hard work has paid off and Kalianna is just a bit behind. You don't want to think of your child being bullied or looked down upon...

With Autism, there are now three levels. Level 1 is high functioning, Level 2 are those who can semi communicate one way or another but still need some day to day assistance. Level 3 is low functioning with severe deficits and require day to day assistance with most to all tasks.
Kalianna was given a formal diagnosis. Her Global development delay sticks. She was diagnosed with an Intellectual delay which as they explained is the new term for "mental retardation." She was also diagnosed Level 3 autistic.

The likelihood that Kalianna will be able to be a independent functioning adult is pretty low. The professional opinion we were given is that Kalianna will not be able to live independently. Typically level 3 can be institutionalized if symptoms worsen. They need day to day assistance for the rest of their life. She could move up a level depending on how she takes to her therapies over the years but even then living on her own, having a full vocabulary is unlikely. It hit me like a ton of bricks . I know nothing is ever set in stone and some have made great progress. I hope that will be my daughter but I will also prepare for the other route as well. I will take care of her for the rest of her life if that is what is needed. I will do everything in my power to provide her with what she needs.

On that note, we are in a gray area as I like to call it. Services with the regional center have ended and we are in a slow process of getting Kalianna set up with the school district. However, logistically it doesn't seem feasible. Dad and I co-parent well but we both work full time. He works for Sharp Mesa Vista as a Mental health associate and I work for the Naval hospital at Camp Pendleton as a Data Specialist. We have applied for financial aid, government assistance, subsidized childcare but we always seem to be just a bit above the qualifying limit. Also, with COVID19 transportation to and from school would not be an option. 

I am doing all I can for my daughter. I am in the process of receiving a Medi-Cal waiver so my income can be over looked and we can use Medi-Cal as a secondary insurance. We are in the process of getting her evaluated through the school district, setting up and IEP, requesting a Para/Aide full time. I am doing an appeal so she can qualify for social security disability benefits. I am looking into pushing for more Respite hours than the 16 hours a month we have been blessed with. I am looking into In Home Support Services to one day possibly be her care giver. I am in contact with her insurance to provide diapers, wipes, pull ups, handi cap placard as she is a flight risk. 

If you see anything that you are aware of that I have not mentioned please feel free to reach out! I will take and help, tips or tricks that I can get. Thank you for reading and thank you for the support! <3


Sincerely,
Heather Hooper, Benjamin Trujillo & Kalianna