Original post date: June 2019
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Jack finished his participation in Baylor’s ML4 research study program, and we couldnt be more proud of him. This was our second time out there, if you remember we made this trip in December 2017, with all THREE boys. #oy We opted to leave Liam and Theo at home, and as much as we missed them, Jack loved being an only child for a few days.
We decided to spend an extra day or two in Texas and do some sightseeing. We made the 3 hour round trip to Waco, TX to check out Magnolia Market/Silos. I enjoyed it, but I don’t think I would ever fly from Ohio to Texas to visit, if that makes sense. I was still thrilled to cross it off my bucket list. We enjoyed a few bake goods from Magnolia Bakery, and the boys enjoyed their shaved ice from a local food truck! Sunday, we hit up the Dallas Aquarium, by far, one of the best we’ve been to! Jack loves aquariums, easier for his eyes to track as the fish slowly swim back and forth in the tanks. The weather was so much better this go around, too! The boys were able to enjoy the hotel pool! Dr. S was very impressed with Jack’s swimming abilities, that Im hoping this prompts Brett to put a pool in at the new house!
This particular study focuses a great deal on the neurological side of ML4, and how the disorder effects the brain. It requires an MRI of the brain, and usually takes about 1-2 hours from start finish. I’ve said it before, and I’ll say it again, I will never get used to seeing Jack go under. The tears are fewer, but they are still there. The look on his face this go around was sheer anger, and my mama heart wanted so badly to pull him from that table. I am always so impressed at how well he recovers from anesthesia, and the minute you get the text “he’s waking up” it’s a full on sprint to his bedside. We are still waiting for the results, but we are praying things look the same, if not better than before. Jack also met with several therapist, who all evaluated him. He did pretty good, considering these were (mostly) all new faces, he engaged and participated, showing them his incredible throwing arm!
I think by far the most memorable moment for me, was our meeting with Dr. S. While doing his examination, he placed a ball and a rattle in front of Jack on a table. He asked Jack for the ball, and Jack selected the ball and gave it to Dr. S. Now, Brett and I had no doubt he would be able to do this (Jack loves to throw balls etc), but when Dr. S. asked Jack for the rattle, Jack took a minute, then handed him the rattle! Dr. S. rotated the objects, and again asked for the ball and rattle two more times, and Jack correctly handed him the appropriate items. No words. We were so excited! It’s these little moments, that will always sustain us in the darker times, the moments we hold onto until the next big thing comes along. I know I’ve touched down some on the testing we had done, and we know that Jack has Ml4, which is caused by the mutation of two genes; one known MCOLN1 (Ashkenazi Jewish gene) and one undocumented gene. We are hopeful that Jack’s undocumented gene, will prove beneficial as he continues on his path. We’ve been told, like many other diseases/disorders, there is always a bad/better/best scenario, and I think Jack falls into the better category. We will cling to that, praying for those who are on the lower end of the spectrum, as we continue to give thanks to God, for knowing this is where we need to be, asking for strength and understanding as we move forward.
We are grateful to the individuals who are working hard to better understand ML4, and ways to minimize the progression. The many Doctors and Scientists, who look at our child, not as “subject #5” but as Jack, the adorable curly haired little boy. To the individuals who donate to the ml4 organization, so families can participate in these studies, without the additional financial burden. To the friends and family who support us, with love and prayers, we owe much to all of you!
Continue praying for Jack and others living with ML4, for those working towards a treatment and someday, God willing, a cure.
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Tui Na Chinese Herbal Remedy
In Chinese, Tui Na is Called the”Master of Heaven’s paintings”.
Tui Na literally means “heavenly cloud”.
The character,”Na” stands for”water”, so when translated it means”heavenly water”.
Additionally, this is where the concept of the”Shiva Cloud” stems from.
Tui Na is a branch of Chinese Esoteric Medical concept
and as this is frequently applied in conjunction with acupuncture, fire, acupuncture, tai chi, and
other eastern forms of internal medicine, and wu-si,
or Oriental bodywork. Because Tui Na is a vital component of the course of Shiatsu, or even the Western art of healing hands, it has been used to promote healing within the martial arts.
In the Chinese tradition, Tui Na is thought to facilitate the proper circulation of
Chi or the”energy” in and about the body. Tui Na is believed to increase circulation,
stimulate the circulatory system, equilibrium Qi, and protect against tension and injury.
Practitioners think that appropriate Chi flow throughout
the body can assist with the healing of different ailments, such as asthma, headaches,
constipation, diarrhea, allergies, fever, pain,
PMS, palpitations, sleep disorders, and even some kinds
of cancer. Since Tui Na is thought to help the body’s natural healing process, many professionals
believe that its usage promotes self-healing.
When Tui Na is used in conjunction with acupressure and other traditional Chinese medicines, it is thought to give additional benefit.
For instance, Tui Na is advocating to take care of asthma,
in addition to headaches, PMS, arthritis, fibromyalgia, chamomile, nervousness, sleeplessness, and even some kinds of cancer.
Many Tui Na specialists recommend the combination of Acupuncture and
Tui Na remedies for those who suffer from chronic musculoskeletal problems.
In fact, many Acupuncture/Tui Na specialists recommend
that their patients use Tui Na, together with Acupressure, for the best possible
outcome.
One of the reasons which Tui Na is so helpful in the treatment
of a huge array of illnesses must do with the positive comments that traditional
Chinese medication gives them. For instance, Acupuncture and Tui Na is quite complimentary to each other
because both Chinese medicines and Tui Na help stimulate the
flow of Chi through the body. Considering both Acupuncture and Tui Na are rooted in traditional Chinese
medicine, there are numerous theories and beliefs which practitioners
of Traditional Chinese Medicine may learn from one another.
This is particularly true since many of the health states we call ailments
in the West now have their origins in Traditional Chinese Medicine.
For example, there are particular points within the body
that are connected to the various bodies which people have inside of them.
If these factors are disturbed or affected by some outside stimulus,
sickness can result. Acupuncture and Tui Na stimulate the flow of
Chi and also permit the flow of vital energy to properly flow through
your system. Tui Na practitioners use various procedures and techniques like gentle pushing, holding, and tapping on certain pressure points on the human body.
This makes it possible for them to excite the circulation of blood
and nutrients through the body. When this happens, the illness is prevented.
Aside from the various illnesses which may be treated, Tui Na also has other positive
effects on the patient. A few of the disorders that Chinese medicine
practitioners utilize Tui Na to treat include pain, muscle pain, arthritis,
high blood pressure, colds, flu, sinusitis, respiratory distress, PMS, skin disorders, varicose veins, joint and shoulder pain, psychological disorders, insomnia,
and a lot more. Actually, Tui Na is commonly utilized to treat a range of conditions,
which is the reason why it is an extremely popular form of Chinese medicine.
To be able to get benefit from Tui Na, an individual must begin by obtaining a precise diagnosis.
After a diagnosis is provided, a suitable
treatment can be prescribed for the individual.
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experience with something like this. Please let
me know if you run into anything. I truly enjoy reading your blog and I look forward to your new
updates.
Good day! Would you mind if I share your blog with my zynga group?
There’s a lot of folks that I think would really appreciate your
content. Please let me know. Thanks
What’s up, this weekend is pleasant for me, because this point in time i am reading this fanta