Erika has had her first healthy year.   Now that Erika is feeling better, we are able to make more progress both at school, and physical  She started the Middle School this year!  She is doing quite well.  Perkins School in Boston, (the deafblind educators) came for more training at school.  The team was receptive and has done a good job learning about CHARGE and Erika’s abilities. She is making choices using the PECS system and with switches   She has made some new friends, and is excited to greet them by waving hi!  Her cognitive abilities have really improved.   Erika made two trips this last year to the intensive therapy program, she has begun taken steps, with assistance with crutches.  Her upper body strength has also improved. The hyperbaric oxygen therapy seemed to also show marked improvement in both physical and neurological development.  She is busy 5 days a week with PT after school, bowling, dance classes, horseback riding and special Olympics.  Her swallowing has not shown much improvement, we still hope that some day she will be able to get her g-tube removed, but we do not see that in the near future.  We are working on this as best we can, however, we no longer have a speech therapist working with her at home.  We again went to see a specialist in Connecticut that works with kids with swallowing dsyphagia, she gave us a program that we work on at home.

 

We are still working closely with her GI doctor and Endocrinologist.  She is not growing much or gaining weight.  We are considering some growth hormone therapy.  We worry about bone density and muscle strength as well as getting to a more appropriate height.  She is almost 14 and only 49 lbs. and 49 inches tall.

 

Erika also recently started horseback riding at a new place.  They were able to see that Erika was able to ride with out a back rider!  She looked so strong and independent on the horse!  We have just returned from another intensive therapy session.  We again tried the European program in Michigan.  It is similar to the program she attends in California, however, it is only 3 weeks.  The seem to concentrate more on core strengthening versus endurance.  Both programs are quite effective.  I think perhaps we will try both each year.  Erika is getting so much stronger.  We feel between these programs, her physical therapy at home and at school, Erika will soon walk with minor assistance.  She tries really hard, is so proud of herself and gets so excited with each step.  Stay tuned for further updates.