As you may know we’ve waited almost a year to see a highly recommended and sought after doctor in the Muscular Dystrophy community. She’s established a well known Neuromuscular/ Duchenne Muscular Dystrophy Clinic in Worcester, M.A. and leads research in DMD right here at UMASS.
It seemed like just yesterday when I contacted Dr. Wong and her team hoping and praying she would take Jonathan on as a patient. This woman has patients from all over the U.S. and many other countries, so I wasnt sure what to expect.
Yet here we are at the pinnacle of our stay here in Massachusetts. Our first visit with Dr. Wong went exceedingly well. Our day started at 8am at her clinic, from there we proceeded through a surplus of historical questions from every specialist you might think of and ended our day around 4pm. By the end of this week, we will have seen the Neurologist, Cardiologist, Physical therapist, Occupational therapist, Orthopedics, Nutritionist, radiology, the Nuclear Medicines/Bone team, individuals in her research team, and the list continues.
Since being here I will say, Dr. Wong is the Cream Of The Crop, not only is she extremely knowledgeable but her bedside manner is wonderful, her team and her treats us like valuable human beings instead of a statistic. As most specialist would have been in and out within 30-45 minutes maybe an hour depending on what it was, but she spent atleast 2 hours at a time with us. She sat in our room well passed clinic hours of operation to run through every detail of Jonathan’s care; Evaluating, and explaining things involving his diagnosis. This was by no means her first rodeo with DMD and for once I’ve felt well informed and well equipped with her educated medical recommedations. This was new to us. In the last few years I’ve felt like I’ve been tossed in to the deep end of the pool expecting to sink or swim. Although San Antonio has a large medical community they’re still very new and young to Neuromuscular and rare diseases, what they know may be textbook, but is not yet experienced. However, I am hopeful for the new neuromuscular clinic being established at Santa Rosa Medical in San Antonio.
So, Dr. Wong saw that Jonathan is in way better shape health-wise and in his abilities than she expected before his arrival. He is still partially ambulatory, which means he is still capable of some walking and standing. The team sees great potential for Jonathan to join clinical trials in the near future and will also be placed for eligibility. His heart will need continual monitoring for scarring, along with bone health for osteoporosis. We’re seeing minor signs of scoliosis that can be helped and corrected since we’re spotting it early.
This next year we have a new plan of care, and some new goals:
- Focus on his ability to stand
- Maintain his upper body strength (as to maintain his ability to feed himself)
- Use his daily stretch regimen
- Prepare for Myofascial Lengthening surgery for his legs
- Prepare for the purchase of a wheelchair accessible van.
- Prepare for a hybrid Stander and Powerchair. (Finally received recommendations)
- DMD testing for myself
- And many more that will be established once the remainder of lab testing is received.
These are great goals that will be coming at a great price to myself and my family; aside from money it is mostly time, energy, strength and will-power as the most valuable asset to have at this point. With a community of family, friends and prayer warriors I believe anything is possible. Im grateful God has blessed me with some awesome people surrounding us.
In summary, we leave here with so much more knowledge than when we arrived; more hope, and encouragement knowing we are in the absolute best hands possible. This has been a wonderful experience for all of us in a loving and caring environment, and we are blessed to have the opportunity to be in the UMASS DMD program.
And so….. a breeze of fresh air flows through the house of Giggle.
Thank you for your love, time and interest in us.
Check out our time here in Massachusetts with Jonathan’s favorite traveling toy by clicking below:
The Giggle Hut Blog 
Oh Hi Tami and family 😁
All of us have been waiting for some news on Jonathan’s progress after this Dr. visit including me. I’m really glad to hear y’all are getting the attention and time you deserve, and most important I’m glad to be apart of y’all’s life 😋 when were together I like that we can be silly and just have fun no matter who or what is going on around us 🤪 I look forward to y’all overcoming these obstacles that have been placed in your path, and with the help of family and friends it’ll definitely be an adventure for all of us. I’m sure it’s gonna be tough but with you as the pack leader 🐺 you’ll be fine. Have a safe trip back home and if you ever need anything you know where to find me. 🤗
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