Hope For Rex

Sorry I haven't updated you all in so long! We are 2 months into the KKI Neurobehavioral program now and Rex is FINALLY showing about 80% of the Self-Injury and Aggressive behaviors he had at home. The team is testing different treatment protocols and the official treatment should start soon.

Rex is off all of the anti-psychotic meds! YAY!! He is losing the many lbs he gained on them and is looking like his old self again.

Rex has been cleared for field trips now. They went to the movies twice, at the AMC sensory friendly film showings. I went with him this past Saturday and we saw the Muppet Movie. He loves going to the Healing Garden and the Playground. They take the kids from the unit almost every Sunday afternoon and the weather is still very nice here.

We have brought Rex back for a Therapeutic Leave of Absence to the Ronald McDonald House a few times now. Despite the HUGE social anxiety with all the loud kids here, he does pretty good! We can always escape to our room when things get overwhelming. He really just wants to cuddle in bed and watch movies when he is here. I love it too!

Thank you all for your continued support. Much love and appreciation from our family this holiday season.

Well, we are three weeks in now and had our first interdisciplinary meeting. It went very well and I am amazed at the collective knowledge of the group, not only about their area of expertise, but about Autism and ABA.

The functional analysis is still ongoing. The found the number one antecedent is Rex not having access to what he wants. During many of the 10 minute sessions he had up to 30 SIBs when denied access to favorite items. This doesn't surprise me one bit!! Also the good news is he no longer seems to be using his behaviors to seek attention. This means that the work we did with Crisis Intervention at home worked!! Noise as an antecedent will be difficult to analyze due to the many noises constant noises on the unit. They will have to work more on this in the weeks to come.

Speech is very concerned about Rex's eating and chewing. He is vomiting more frequently again, but this could also be behavioral. Both disciplines are keeping a close eye on eating and rumination.

Psychiatry is reducing his meds a ton!! This has a very good effect on his personality and sleep patterns. He is no longer sedated all day long!!

Nursing is doing a great job on keeping him "regular" which has always been and issue for Rex. One NP proudly calls herself the poop Queen.

Rex also went to the Eye Institute today to get his retinas checked. They will call me tomorrow with an update on that. Praying he doesn't have a detached retina and need surgery.

Rex still seems full of anxiety and "stressed out", but overall he is adjusting well. We brought him on his first Therapeutic Leave of Absence on Saturday. He was able to come to the Ronald McDonald House and celebrate his birthday. We had pirate cake, played wii, played outside and cuddled. We did have to rush him back to KKI when he lost it, about 3 hours into the visit. He heard some girls playing on the playground and their shrieking made him bang his head on the pavement :( I had to take him to our room and he hit me in the face a dozen times or so, just like old times!! Overall not a bad visit off the unit :)

There will be a few more weeks on analysis before they start any treatment. The team is very thorough in making sure they capture all of the antecedents.

And right now he is having his Birthday Party on the unit!! Happy 8th Birthday Rexy Roo!!

We Have Arrived.....

After a 6 1/2 hour car ride we pulled into Kennedy Krieger Institute at 10 am Monday morning. Rex was AMAZING during the drive, but did not sleep one bit! We were met by the valet parking staff and then greeted at the door by nursing and behavioral staff. Everyone was so pleasant and Rex stayed very calm. After signing a few papers they took Rex to the unit and LouAnn and I met with the staff all day (on only two hours of sleep)! The first two days have been full of meetings with various disciplines:
Psychiatry
Nursing Team
Behavioral Team
Special Education Teacher
Speech & Language Pathologist
Social Work
Financial Staff

They asked every question I could imagine about Rex's medical, behavioral, emotional and academic history. This is truly an amazing experience so far. Everyone is so dedicated and wonderful!!

Rex seems sad and withdrawn at this time, but he is coming around. He has had SIB since we arrived but not a severe as at home. They call it the honeymoon period here, and it happens quite often with new patients. Rex has also starting vomiting again since arriving. The nursing staff are so well-versed in this and with all of the gastrointestinal issues that are common with autism. One NP proudly called herself the "Poop Queen".

While it is so difficult to leave my beautiful son every night, I know he is getting the help he needs. They will teach him things I could never teach him alone. He is much safer here. We appreciate all your support from home and hope to have another update soon.

~Amy

for more blogging and updates visit carepages, where I will give more information about his therapy and interventions. You have to sign up for Rex's safety, as I do not like posting personal things on this website.
www.carepages.com/hopeforrex