Saturday, April 21, 2012

Update:Saturday, 4/21/12

Forrest has been working hard and making progress this past week at NRH. He's had intensive therapy sessions as usual, working on physical and cognitive improvements. He's been continuing to fight dystonia, or muscle tightness/spasms, that hamper his ability to control his movements, despite effort and will power on his part. This muscle spasms are caused by neurological tremors and he's on a number of medications to try to alleviate the symptoms. Yesterday he went to Children's Hospital to undergo a procedure which he has had several times before and has helped in the past. It was quite an undertaking, involving an ambulance transport, heavy sedation, and more than 30 Botox injections in his arms and legs. In the past the injections have helped but they wear off after a number of months.

This morning we made it outside to the NRH garden again and incorporated some therapy with just plain having fun and relaxing. He really seemed to enjoy being outside. His humor is still there as always, and was given a great boost by Tom Sweitzer visiting last week. When he just walked in the door Forrest got a huge lopsided grin. We stirred up the unit with our singing and dancing in Forrest's room. Forrest has been working on giving a thumbs up and was able to raise it a bit yesterday. He helps occasionally put his arm through a shirt sleeve, and during his active moments makes some herculean efforts. We are still aiming for moving home on May 1st, if everything goes well. The incision site is still healing well and looks good so far, no infections. We are keeping a close eye on it and keeping it clean. He still has some upcoming medical adjustments, included "dialing-down" his shunt again on Monday. Thank you so much for the support, it will be good to get home and closer to his friends and our friends.

All the best,
Austin & Team Forrest

Forrest standing tall with Mom and his Occupational Therapist, Sarah

Forrest having fun while Tom Sweitzer is a blur of motion dancing and singing

Epic Swordfight with Alpha, one of Forrest's private duty nurses

Even though Forrest can't push his legs just yet, we work on connecting the thought with how the action feels


  1. Forrest, you are doing such an amazing job, and I am so happy seeing you out enjoying the sunshine, even if you're not at home. I am quite sure that Mr. Sweitzer's visit caused a ruckus on the floor~ can't wait till you're home again and we can have another crazy hat day, maybe with another opera?! Love you much (all of you!), and miss you lots- keep on keepin' on, you're amazing!! xo

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  3. Hi Forrest and Team, It looks like things are going great. We're so happy for that good news, and I'm praying that you do get to move back home on May 1st. I know that will raise everyone's spirits.

    Love and Prayers,

    Joyce and Wilbur Ellis

  4. Hi everyone. I continue to be amazed and inspired by each member of Team Forrest, but especially in awe of Forrest! You each make me want to live better today than I did yesterday. You make me want to embrace friends, family and life with new passion - even strangers and you never know the road one another walks and how you may positively impact their day. Thank you. God bless each of you and today I pray the tremors will subside and for continued healing of body, mind and spirit for Forrest AND also for each of you who works so closely with him...thank you for giving so willingly of yourself and for sharing the journey with us.

  5. Hi to everyone on Team Forrest....My thoughts, prayers and positive vibes are sent your way..You all are such an inspiration...I love seeing the smiles in those photos of Forrest..and from the most recent of the two beautiful gals with him, Rae and Sarah, it's obvious that the strong love and encourgement is working!! Love to you all!
    Patti Brantley