What does hope look like to you? When your child is sick or injured, you throw this hope word around a lot and it means such different things at different stages of the journey. In the early days after Emmy's birth, my hope was for her to be "normal". . .to walk, talk, eat and do all of the stuff we used to take for granted. I really didn't foresee her being almost three years old and still not being capable of holding her head up for much longer than a few seconds. I knew her situation was severe. I'd read stories about older kids who were severely affected by their brain injuries and I never imagined that would be her outcome, or that I'd be ok with it. I wasn't ready. But it's funny how your hopes change as you progress in your journey. Maybe that's called acceptance? Little by little, based on the outcomes of your child, you revise your goals.
It took almost a year to come to terms with the fact that Emmy would not walk, talk or eat anytime soon. And when she does do each of those things (which I know she will), I now know it'll look much different than I would have expected before she was born. But one of my biggest hopes after living through that first year of a very unhappy child screaming around the clock with only scarce glimpses of a smile in her sleep near the end of her first year, was for her to be happy. We longed for a smile that would confirm it. It killed me to see her in such discomfort and not be able to do anything about it.
Little by little that smile came around. It took years, sometimes hiding for weeks or months before it would return. Our moods started to revolve around that smile. When it came, life was good. When it didn't, life was bad. It was not to be taken for granted. The slightest tease of a smile and we'd spring into action to get a photo. One of the first ways to get a smile was vigorously bicycling her legs. I did this tirelessly.
And now, finally at almost 3 years old, that miraculous smile comes regularly. It's usually the first thing she does when she wakes in the morning and the response you get when you tell her secrets, turn her upside down, spin her in a circle, let her look in the mirror, sing her favorite songs or let her dog Daisy lick her face.
Of course I have new hopes now and we're always striving for more. But live a year with a child who doesn't smile, and I promise you that once they can (and do), it's really all that matters.
It took almost a year to come to terms with the fact that Emmy would not walk, talk or eat anytime soon. And when she does do each of those things (which I know she will), I now know it'll look much different than I would have expected before she was born. But one of my biggest hopes after living through that first year of a very unhappy child screaming around the clock with only scarce glimpses of a smile in her sleep near the end of her first year, was for her to be happy. We longed for a smile that would confirm it. It killed me to see her in such discomfort and not be able to do anything about it.
Little by little that smile came around. It took years, sometimes hiding for weeks or months before it would return. Our moods started to revolve around that smile. When it came, life was good. When it didn't, life was bad. It was not to be taken for granted. The slightest tease of a smile and we'd spring into action to get a photo. One of the first ways to get a smile was vigorously bicycling her legs. I did this tirelessly.
And now, finally at almost 3 years old, that miraculous smile comes regularly. It's usually the first thing she does when she wakes in the morning and the response you get when you tell her secrets, turn her upside down, spin her in a circle, let her look in the mirror, sing her favorite songs or let her dog Daisy lick her face.
Of course I have new hopes now and we're always striving for more. But live a year with a child who doesn't smile, and I promise you that once they can (and do), it's really all that matters.
One of our very most favorite therapies is CME (Cuevas Medek Exercise). I honestly can't remember how or where we heard of it, but once I learned about it, I had to find it. I was fortunate enough to discover that it was being offered at the NAPA Center in Los Angeles. So at the end of Dec. 2011 when Emerson was just shy of her first birthday, we embarked on this new therapy adventure. It was a big undertaking considering NAPA is a one hour drive each way (in good traffic) and Emerson spends most of a car trip in hysterics. But we wanted to give it a go. From the very first session, this therapy showed more promise and gave us more hope than anything else we had tried. It is geared to provoke an automatic motor response, and since it's been tough to find anything to consistently "motivate" Emmy, this was key. The NAPA Center therapists whom we've worked with, Rebecca and Raquel, are also extraordinary. Today, after a particularly good session, I decided to go back in the archives and compare footage from when we first started CME almost a year and half ago to now. Here's what I found.
Dec. 30, 2011
June 26, 2013
Jan.13, 2012
June 26, 2013
We started out doing CME once a week for an hour. We now go twice a week for an hour at a time and intersperse "intensives" where we will go every week day for three consecutive weeks. We usually time these intensives immediately after stem cell therapy when it's most important to do intensive therapy and get the most benefit from the stem cells. I really believe that the combination of stem cells and CME is magic and this combo has given us the best results. Emmy's core strength continues to improve. She has gained head control and is getting close to being able to sit up. Her tone has improved and she is now consistently baring weight on her legs, rolling better and even initiating steps here and there. Her ATNR and twisting has decreased. It's pretty amazing really to watch her do the same exercises side by side from when she started until now. Hooray for CME!
Reflexes are involuntary movements the body makes in response to a stimulus. Certain primitive reflexes are present at or shortly after birth, but disappear at predictable stages of development as a child grows. Specific reflexes that do not fade away – or those that don’t develop as the child grows – can be a complication from cerebral palsy.
Common primitive reflexes that may improperly function or persist include, but are not limited to:
Asymmetrical tonic reflex – when the head turns, the legs on the same side will extend, and the opposite limbs contract like in a fencing pose. Asymmetrical tonic reflex should disappear around six months of age.
Symmetrical tonic neck reflex – the infant assumes a crawling position when the head is extended. Symmetrical tonic neck reflex should disappear between eight and 11 months.
Spinal gallant reflexes – when the infant lies on its stomach, the hips will turn towards the side of the body that is touched. Spinal gallant reflexes should disappear between three and nine months.
Tonic labyrinthine reflex – when the head is tilted back, the back arches, the legs straighten, and the arms bend. Tonic labyrinthine reflex should disappear by three-and-a-half years of age.
Palmer grasp reflex – when stimulating the palm the hand flexes in a grasping motion. Palmer grasp reflex should disappear around four to six months.
Placing reflex – when an infant is held upright and the back of a foot touches the surface, the legs will flex. Placing reflex should disappear by five months.
Moro (startle) reflex – when an infant is tilted so his or her legs are above their head, the arms will extend. Moro reflex should disappear by six months.
Not long ago, we discovered a specific therapy that addresses the reflex challenges caused by CP and other neurological conditions called Masgutova Neurosensorimotor Reflex Integration (MNRI) Method. MNRI is comprised of a number of programs, each designed to reinforce and optimize the integration of primary motor reflex patterns.
Initially, we traveled to Culver City and Orange County to get this treatment, which was not ideal both based on our lack of time for traveling and Emmy's trouble coping with car travel. But when the therapist began offering in-home treatments, we signed up and Emmy is now doing MNRI every Saturday for two hours at a time. The techniques don't require her to do much, she can even be asleep, so I don't feel so bad that I'm making her "work" on a weekend. There are times I think she even enjoys it, such as in this clip from today.
So is it working? Honestly, it's tough to say. Emerson is getting so many different treatments and therapies at any given time that it's impossible to know what's doing what. But I'll tell you, she has been making so much progress, especially in the last month or so, that it's impossible to ignore that some of that progress isn't the result of MNRI. It's such a complex therapy; the originator Svetlana Masgutova is brilliant and did an early assessment on Emmy that blew me away. But I've certainly seen her tolerance for the various exercises increase over the months and her ability to stay organized during the two hour appointments. And that counts for a lot. Would I recommend it to others, absolutely. All our kids are different and what might work for one, may not work for another and vice versa. So I think everything is worth a shot. Besides, any therapy we can do poolside and/or while asleep is pretty good in Emmy's book.
For more information or to locate a practitioner, visit http://masgutovamethod.com/
TGIF and the end of another long week. Every day in Emerson's life is a sprint. Link the days and weeks together and every month is a never-ending marathon of therapies, appointments and activities. But the weekends are just a little bit slower paced around here and we look forward to them. Here's a gander into the nonstop therapy schedule of a typical week in Emmy's life. This doesn't include all of her doctor's appointments which include a pediatrician, neurologist, epileptologist, pulmonologist, orthopedist, ophthalmologist, gastroenterologist, urologist, ENT, optometrist, dentist and dietician who all like to see her every three to six months. Keep in mind, this is a two-year-old we're talking about!
Monday:
11:45-12:30 - Vision therapy;
3:00-4:00 - Occupational therapy.
Tuesday:
9:00-10:00 - Travel to NAPA Center;
10:00-11:00 - Feeding Therapy and VitalStim;
11:00-12:00 - Cuevas Medek Exercise (CME);
12:00-1:00 - Travel home from NAPA Center.
Wednesday:
9:00-10:00 - Physical Therapy;
12:00-1:00 - Developmental Therapy;
2:30-3:30 - Hippotherapy.
Thursday:
9:00-10:00 - Physical Therapy;
11:30-12:30 - Travel to NAPA Center;
12:30-1:30 - Cuevas Medek Exercise (CME);
1:30-2:30 - Feeding Therapy and VitalStim;
2:30-4:00 - Travel home from NAPA Center.
Friday:
9:00-11:30 - CHIME Infant & Toddler Program;
3:30-4:30 - CranioSacral Therapy.
Saturday:
12:00-2:00 - Masgutova Neurosensorimotor Reflex Integration (MNRI) .
Sunday:
OFF.
But that's not enough, and each day we're also expected to work on more therapy in our "free time". It's exhausting for her and exhausting for me, but we do it, because we know it's important. Yep, she's a STAR!
Before Emerson was born, I started writing a blog which I coined Palm Ranch Ramblings. Once I got pregnant, the content of the blog quickly evolved to all things prenatal. This continued after her birth and the outlet became a diary of Emmy's first year of life, the highs and lows of it. But the name Palm Ranch Ramblings just didn't seem to fit anymore and eventually my writing fizzled out as well.
I then channeled my energy into a Facebook page for Emerson aimed at fundraising, which was very successful. Our fundraising efforts are now done, and I continue to keep Emmy's "fans" updated with pictures and videos. But I've been considering revamping the old blog for awhile now so that I could expand on my updates and once again have an outlet for writing. I knew that a new blog was in order with a new name and a new design suitable for our little princess. I toyed with many names (Life with a Hummingbird, Emerson's Trail ), but none seemed right until now. The simplest idea was the one that seemed the most suitable. Our little girl, after all, is undeniably a star.
Here I hope to go more in depth about her therapies, equipment, products, toys, treatments and more. In so many ways it feels like we are still new to this journey, and at two years in, we really are. But the truth is, two years in the world of brain injury is a long, hard road with a crash course in many topics you wish you knew nothing about. Special needs parents quickly need to become well versed in medicine, therapies, nursing, cheerleading, advocacy, insurance, government services, research and so much more. And sadly, there are always new families joining this special club, so you aren't the newbie for long.
So with that, welcome to. . .drum roll please. . .Emmy is a Star.
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