DAYC Annual Review, 15-1/2 months old, and therapy thoughts

We had our yearly review of goals and IFSP (Individualized Family Service Plan) with our Early Intervention team this week.  I have been dreading it because I hate what it represents…the quantitive evaluation of my daughter and her delays.   Informally, we do it every 4 months to continue to monitor her progress.  Normally, they do it every 6 months with a review of services at the yearly evaluation.

Since her last evaluation at 12 months old:

Cognitive Age Equivalent – 11 months
(at 12-month assessment, she was assessed at 10-month level

Communication Age Equivalent – 8 months
(at 12-month assessment, she was assessed at 8-month level)

Social-Emotional Age Equivalent – 14 months
(at 12-month assessment, she was assessed at 14-month level)

Physical Age Equivalent – 8 months
(at 12-month assessment, she was assessed at 8-month level)

Adaptive Behavior Age Equivalent – 14 months
(at 12-month assessment, she was assessed at 9-month level)

Good news:  Thanks to her newfound ability to hold a bottle (even though we have to place her hands in the right place) and the fact she is eating a few finger foods, her adaptive behavior has jumped up quite a bit!

Bad news:  Social and communication remained unchanged in the past 4 months.  Cognitive only went up slightly, one point.  Physical score stayed the same as four months ago, but I know that is only because they have to stop the test because she doesn’t crawl yet.  I don’t take that to heart because I know she has made leaps in physical therapy in the past few months.

I’ve been starting to question the amount of therapy Hannah is set up for.  After hearing from other parents of nGD kids and other children with special needs as well as Dr. Goker-Alpan from the NIH, the general consensus is that *I* need to come up with what I feel is best for Hannah and our family without becoming a burden to our family.   That at some point, I can’t let this disease run our lives, but on the other hand, she really has made such great progress despite her DAYC scores.

Today was her first day of hydrotherapy, and she LOVED it.  I swear, it was better than any PT session we ever had.  She tried so hard to walk, and because her muscle weakness (hypotonia) wasn’t an issue, she was just jumping around everywhere.  She did fantastic!   We worked on crawling on the top step, walking, and cruising around the handrails.  She kicked her feet while on her stomach while chasing little fish in the pool.  It was absolutely amazing.

Therapy has so many benefits.  Because of her hypotonia, hydrotherapy is a definite must.  Definite, definite, definite. 

Physical therapy once a week is also a must, as is occupational therapy once a week (usually twice a week but hydro is taking one of the spots).  I talked to her OT (who also is the one doing the hydrotherapy), and I told her I want to start focusing less on feeding issues and more on cognitive and other life skills.  So Wednesday during OT, we worked with those chunky puzzles with animal pieces and worked on animal sounds and matching.  She loves the stimulation regardless of whether or not she gets it.

We also have developmental therapy once a week, but that is more for our entire wellbeing as a family with Hannah.  Our therapist is like a family member, and she works with Hannah on whatever Hannah is up for.  She is also one of the few people that Hannah will go to willingly, so keeping that weekly appointment is a must.

Vision therapy.  We start that next week.  That remains to be seen if it will be helpful.  At least that, like developmental therapy, is at our house so that is a comfortable atmosphere for Hannah.  I’m going to talk to our PT about bringing her care to the house as well since she does Home Health services as well.  OT would be our only hospital visits unless I could get that to the house in the future as well.

There seem to be no guidelines for this.  After talking to one of her therapists, most children have a traumatic injury or chronic illness, and then they work from that point to improve their quality of life and learn life skills.  With Hannah, we are in a constant battle with the neurodegenerative brain decline of this disease, and I just have no idea when the tables are going to turn. 

Right now, we are still making great progress.  Slow, but still progress.   We are still a step ahead of this disease.