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Thursday, November 3, 2011

Our Fragile X update

My sister, Brittany, asked me recently to report on how and what we were doing related to the boys' Fragile X conditions. Here's an update on the various services we are using to help them develop to the best of their ability.

  • Attends early intervention preschool four times a week for two hours a day.
  • Is enrolled in a "Wiggly Worm" sensory processing class taught by a Physical Therapist in town. It is a 8 week program subsidized by the Easter Seals Foundation. Four other children and their care givers meet once a week for an hour and a half. We learn various techniques and strategies to increase their "sensory diet"--meaning helping them explore new senses. So far we have learned about vestibular, tactile, auditory and proprioceptive sensory processing.
  • Just had our first speech therapy session. We will be focusing on improving his eating as it is affected by various sensory processing disorders.
  • Just completed his orientation for equine therapy at the Silver Spur Therapeutic Riding Center. It is a fantastic facility. The horses are well cared for and we are excited to start in the Spring. This will improve his coordination, muscle control, confidence, attention span, and many other things.
  • Will start a gymnastics class this week to continue to improve his muscle tone and vestibular awareness.
  • Saw the ophthalmologist who prescribed glasses.
  • Just finished amoxicillin for an ear infection. Fragile X kids are prone to ear infections due to low muscle tone throughout the body. In this application, the Eustachian tube is floppy and prone to collapse on itself--causing lots of ear infections.
  • Is getting scheduled for an initial consultation to determine what, if any, services he requires.
I'm already cautiously watching to make sure Oliver is meeting important milestones in his development. We learned a lot from Jacob and that makes me even more aware of the following conditions with Oliver:
  • His nutrition. When Jacob was 6 months old we took him to the doctor and found out he weighed only 9lbs! The doctor diagnosed Jacob with "failure to thrive" and immediately put him on formula to supplement his diet. He improved dramatically. We wouldn't know until 5 years later that Fragile X kids are poor nursers. They just don't have the muscle tone to breast feed.
  • His muscle control. I am specifically watching how he controls his head and making sure his neck muscles are strong so he can hold his head up properly.
  • His response ability. At two months he should be responding to us with social smiles. We are starting to see that which is encouraging.
  • His ability to bear weight. Jacob did not sit up for a long time. He never crawled. At three years old I was still carrying him everywhere. However, through weekly physical therapy and occupational therapy we were finally able to get Jacob to walk. I am watching Oliver to see if we need to start physical therapy early to encourage him to bear weight on his legs. Again, low muscle tone is a classic Fragile X symptom. The geneticist told us it takes so much effort for these kids to move their muscles, that basic functions like walking can be very difficult--especially in the beginning.
Bottom line: the boys are doing well. We are encouraged by the resources available to help Jacob develop. We are grateful for what we have learned from Jacob so that we can better help Oliver.

1 comment:

  1. I am so glad to here about all this! I feel like I just got off the phone with you and you answered all of my millions of questions. You and David are doing so much for Jacob and Oliver and it's truly amazing. They are such sweet boys and that's awesome that Oliver is starting to smile! Doesn't it just melt your heart when the little responses come?! I really can't wait to meet Oliver!