Nov 11: Children’s Appointment

Went to Children’s to meet with Dr. Burton et. al.:

Notes:
*Jayden had MRV scan and is now too strong and tramutised to do it without sediation. Future scans for shunt may have to be under sediation

*Jaydn and Brooklyn are still presenting high GAGs in their urine. We are still unsure how we got an undectable urine GAG result months ago for Jayden

*it is REALLY hard to collect urine samples…but both kids did really well all day in the city.

*we are officially participating in a new study on Genistein conducted by Dr. Burton at Children’s. We are very excited for this and the potential outcomes of being a part of such a study! We also have worked out a better solution for genistein availability by being participants in the study which is an answered prayer. They are looking for funding to help with the study if people would like to donate directly to research that Jayden and Brooklyn are a part.

* we are working on getting Jayden a sleep safe bed. Saw another family with one and thought it may help get Jayden back in his room and off our floor so we all can sleep better!

*medically, the kids look good and will remain on current genistein dose 3xday at 150 mg/kg. We have noticed that Jayden and Brooklyn seem to be “calmer” still active by normal standards and Jayden is doing much better than this summer. Part of that may also be attributed to the brain trauma he had this past summer as well. It significantly effected all the academic and motor skills he had and is now regained them back.

*children will be seen every 3 months to monitor.

*We are beginning to look at adaptive equipment that will make our daily lives more managable. Car seat, larger stroller, bed, etc.

*we really enjoy working with Katherine Kim and Dr. Burton

*pending: DSCC confirmation. Be praying that we don’t have too much headache from dealing wtih insurance and assistance as we pursue adaptive equipment and medical supplies.

*resolved: genistein!