I know you all like to be aware of Brooklyn's progress. Here is the latest Physical Therapy update for us to take to Dr. Escobar in Indianapolis on Thursday. I know these reports can be discouraging sometimes. We just have to keep working hard (and praying!) I am glad that she is still able to sit up and walk with our assistance. We just need to keep her moving as much as we can! We are well aware that she will have ups and downs, Nan does an amazing job with her PT.
Physical Therapy Update
Name: Brooklyn Butler
DOB: 5-13-05
Diagnosis: Rett Syndrome
Date of report: 7-30-07
Brooklyn is now showing significant regression in her gross motor skills. She no longer initiates creeping on her own and now requires maximal assistance to creep, pull to stand, or cruise. She rarely sits on the floor without leaning on an adult or other supportive surface. When placed in ring sitting on the floor away from any support she moves into supine or side lying position within a few moments. She has not been observed to move back into sitting on the floor once she moves out of that position. Walking in a gait trainer is no longer possible without maximal assistance and its use is not effective or efficient. It is possible to assist her in walking by standing her in front of the adult and the adult offering assistance at her trunk for balance and leg movement. She does as yet bear weight when held in and upright position. Her LE and spinal flexibility is being maintained through stretches that her mother does daily. Her mother also provides vestibular stimulation daily through therapy ball activities and swinging in a blanket. She also continues to do the deep pressure brushing program and joint compressions. These interventions appear to help Brooklyn as she appears to be happier and more comfortable after they are done. Brooklyn is as yet is using orthotics with a plantarflexion stop with good results. She is showing growth and a new pair may soon be needed.
Nan Acra, P.T.
I also wanted to mention that Nan sent a super sweet note to Charlie and me along with this report, thanks Nan!
Tuesday, July 31, 2007
Physical Therapy Update
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6 comments:
You're right, this report is depressing. Try to focus on what she IS doing. For example, saying "da da," communicating her wants with her beautiful blue eyes (I've told everyone how she recognized the kids), being able to laugh at appropriate moments (when Jeff Wiggle falls), and being able to bring joy to so many people's lives. Physically, she may have trouble right now, but mentally she is sharp! And remember our phyhsical body is only shell for the soul that God created. She was perfected by His hand! I can't imagine how tough things must be, just remember that God is God, and even though we have questions and frustrations, He ultimately knows what is good. His attention to detail in creating Brooklyn is Awesome! Maybe we could learn more about God by looking at what's INSIDE her! I love you guys!
Thanks for keeping us updated. We can't imagine what you all are going through and we keep you all in our thoughts and prayers.
We support you guys 100%. Thank you for giving us access to this information about your sweet girl. I wish we could be more active in her life. We admire you and still feel that Brooklyn couldn't be luckier to have parents like you. We love you very much.
Brad and Melissa
We love what Shannon wrote! That is so true! Amen to everything she said! I know that this is a very hard time for you to hear and read the update. Prayers were just said for you and Brooklyn.
God grant me the serenity to accept the things I cannot change,
Courage to change the things I can, and the wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardship as the pathway to peace.
Taking, as He did, this sinful world as it is, not as I would have it;
Trusting that He will make all things right if I surrender to His will;
That I may be reasonably happy in this life,
And supremely happy with Him forever in the next.
I hate to say it, but it won't be the last bad report. We have to accept that despite our best efforts the regression happens. You've been doing everything right. Keep up with everything despite bad reports, because even though it doesn't feel like it (& the reports don't always reflect it), the early intervention is lessening her regression.
Also, remember that you are not perfect and you will make some mistakes along the way, but we do the best with the knowledge that we have at the time. Brooklyn is very lucky to have you both as her parents. Remember, God only gives these angels to people that He knows will take good care of them.
I live by the "God grant me the Serenity" prayer. Live one day at a time. Don't forget to enjoy the little moments, they grow up fast!
Stay strong. We continue praying for you three. Can't wait to see you. Hope you are getting some sleep.
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