Say Cheese!

I, just like most people, don’t always like how I look. I want to lose a few pounds, fix my hair (cover the grays), put on some make-up, dress nicer, etc. However, as a parent there is not always time to make yourself look your best. Don’t use your own appearance as a reason to not be in the pictures.

Years from now your child(ren) will look back on the pictures taken and relive the wonderful memories that were created. If you are not in any of the pictures, it’s harder for them to remember the role you played, the smile on your face as you saw them enjoy life, or how your eyes lit up from the love you feel for your child. Sure, they will know what you tell them, but if you are not in any pictures it’s hard on your kids.

We took a lot of pictures of Casey over the years, and we were not in all of them. When it was a big event or a really special day we tried to all be in as many pictures as we could. I avoided the camera for many years just because I was not happy with my own appearance. I read an article many years ago that helped me to realize that my appearance did not matter, my presence did.

After Casey passed away in 2016, the pictures and videos are even more important. I spend a lot of time every day looking at her old photos and remembering our special moments. I was worried that she would have forgotten that I was there, but now they help me to see the love we shared as a family and remember that we did the best that we could to give her a full life.

You don’t have to be in every picture, but don’t avoid the camera. You don’t have to share the pictures with anyone else, but you and your loved ones will be glad that you have them.

Tough on Goo – Easy on Skin

As parents we all do our best to keep our baby’s skin healthy and clean. Sometimes this can be a lot harder to do than others. If your child has ever had an EEG for example, you know how hard it is to clean up all of the glue from their scalp and hair. Sometimes we have to use really strong and sticky tape to hold lines in place, or keep kids from picking at stitches (or whatever).

Some babies get a condition called Cradle Cap. This is most common with babies, but if your child is not mobile and/or spends a lot of time in bed they may get cradle cap for many years. Sometimes kids may get this type of skin build up on hands, feet, or even their neck from time to time as well.

Whether it’s sticky goo on the skin, cradle cap, or some other hard to remove substance if you are anything like me you have tried just about everything. People recommend special soaps and shampoos, but none of these things work! There is only 1 thing I have found that does work, and it is SUPER gently on the skin. Baby oil! Yep, that’s it, that’s the big secret. This is what they use in the hospital (they call it adhesive remover). It will get EEG glue out, it clears up cradle cap, it is one of the best things to always have handy around the house. It even removes marker and pen ink from skin. No more scrubbing your poor baby’s skin red, now you can clean up their skin and no one sheds a tear.

2013 Holiday Party

ornamentsOn Saturday, December 7th, 2013 Mommies of Miracles was very happy to team up with CPATH Texas to host this year’s Special Needs Holiday Party.

Our friends at Courtyard Austin Northwest

Arboretum generously donated space for the party.

We held a book drive and received many wonderful books that enabled us to have gifts from Santa for each of the kids. All books that were not used were then donated to Dell Children’s Medical Center. We have already started to collect books for next year. If you would like to participate in the book drive please send us an email for more information.

We had some great prizes donated this year as well. We would like to say a special thank you to Neotech Home Health, Austin Aquarium, Morgan’s Wonderland, Build-a-Sign, City of Round Rocks Parks Department.

Our wonderful music therapist, Danielle with Roads of Connection Music Therapys, led the group in some sing-a-long holiday music. The kids all got to hear their favorites.

Becky with Look Here Photo Booth provided her photography services to capture the day.

Then of course, we could not forget our fantastic Santa (he goes by John during the off season).

We had such a great time and we are already looking forward to and planning next year’s party. Stay tuned in fall 2014 for more details. We hope to be able to host even more families next year.

Whole Body Medicines for Special Kids

One of the major benefits of alternative medical practices is their actualization of methods that incorporate the whole body and all of its systems into diagnostic criteria and treatment methods. When looking at the body as ONE integrated system, rather than it’s component parts, patterns of illness and imbalance emerge. These patterns are unique to each child, but are part of a larger ordered pattern of body processes. Just as a farmer would look to find the source of disease if his crops began to fail rather than simply pulling out the plants that are ill, alternative medicines is guided by the understanding that the parts of the body work together and rely on one another to maintain a healthy environment.

2407285655_c2de84f57e_oCranioSacral Therapy is one such “whole body medicine”. It is so named, because it relies on the subtle movement of the cerebral spinal fluid (CSF) housed between the cranium (head) and the sacrum (tail bone). The influx of CSF into and out of the cranial base causes a gentle flexion and extension of the whole body around the spinal chord as the CSF pressure increases and decreases in a wave-like motion. Because the entire body moves with the rhythm of the CSF, CranioSacral Therapists can feel areas of restriction in the body’s movements. Treatment consists of the gentle pseudo-energetic application of pressure to areas of restriction to remove any constraint. Like taking the tension out of an overstretched rubber band or the emotional release that comes with a well-timed hug, tissues in the body begin to unwind, eliminating restriction and improving local function.

accupressureAn older and more well-known “whole body medicine” is Chinese Medicine. This ancient healing art consists of acupuncture, acupressure, cupping, moxibustion, herbs, dietary therapy, energetic healing methods such as qi gong and tai chi, as well as, the more modern techniques of electric stimulation and laser therapy. The foundation of Chinese Medicine is that the body is one integrated operating system in which the internal organs support and control the functional activities of the other organs and the body as a whole. The methods used in Chinese Medicine are very gentle and work with the body’s natural processes to help strengthen and align bodily systems.

Both of these systems of medicine can be extraordinarily helpful to kids with special needs. Dealing with the often immense health issues that come with certain disabilities, it is important to make sure that the body is functioning at its optimal capacity, so healing can occur wherever possible. CranioSacral Therapy and Chinese Medicine work with the body to ensure that it is working at its best, supporting growth and encouraging function.

For more information, or if you would like to give these therapies a try, contact Bee Well Kids in Los Angles and/or Las Vegas, or search for a Chinese Medicine provider near you.

Contributed by Naomi Richman

Music Therapy

logo-multi-coloredAs a traveling music therapist, I spend all day driving through the Texas sun, hauling guitars, drums, and tambourines from house to house, but still the hardest part about my job is answering, “What is music therapy?”. The American Music Therapy Association (AMTA) defines music therapy as “the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program”.

…Am I watching an episode of ABC’s Lost because I feel like I have more questions than answers after reading that definition! Don’t worry, because I am here to break down that definition and give you as many answers as possible about the field in which I work.

First things first, what do music therapists do? My go-to answer for this question is to compare it to something everyone knows. Music therapists are similar to physical therapists, speech therapists and/or occupational therapists in that we are working with clients to improve their quality of life. The areas mainly focused on are physical, emotional, cognitive, and social needs. Through music therapy, clients learn social and communication skills; they learn how to appropriately express themselves through improved emotional processing; they can increase fine and gross motor skills; even stress and pain management can be learned through music therapy treatment. We are not teaching people how to play instruments, but rather using music as our therapeutic medium to increase those areas that are deficient in the clients lives. This would be the “clinical use of music interventions to accomplish individualized goals” of the definition.

The second most common question is who can benefit from music therapy? The short answer: anyone! Really, it’s true. Music therapists across the US and throughout the world work with clients in all types of settings and with all types of needs, ranging from dementia to mothers in labor. AMTA has an excellent definition of who can benefit from music therapy. They say “Children, adolescents, adults, and the elderly with mental health needs, developmental and learning disabilities, Alzheimer’s disease and other aging related conditions, substance abuse problems, brain injuries, physical disabilities, and acute and chronic pain, including mothers in labor all benefit from music therapy”. So going back to the short answer, anyone with a general desire and enjoyment of music can benefit from music therapy treatment. With that being said, there is a common misconception that you have to be musical or have “musical talent” to benefit from music therapy, but that is not the case. Again, we are not teaching music, we are using the therapeutic properties of music to increase skill areas.

Once someone learns about music therapy and what we as therapists do, the last question is usually where do you work? This is different for every therapist. I myself work through the Medicaid waiver program – CLASS – providing one on one, in-home services for children and adolescents with developmental and learning disabilities. I have also been contracted through school districts here in Texas to work with a few children with developmental and/or learning disabilities whose parents have requested music therapy to be incorporated into their child’s Individual Education Plan (IEP). And finally because I enjoy working with the elderly, I reached out to some local rehabilitation centers and am contracted through four nursing homes in the Austin, TX area to provide monthly group sessions for elderly dealing with dementia and Alzheimer’s disease. This may seem like a crazy set up, but I’m pretty sure my situation is the exception. Other therapists have private practices where they have a studio and all their clients come to them. Still other full time therapists work solely in hospitals, one school district, a nursing home, or a psychiatric facility.

26405985456_a981fb8765_oGoing back to that initial definition, the “credentialed professional” is indeed the music therapist. We, as certified music therapists, do have to obtain at least a four year degree in music therapy. Most of us leave college with a bachelor of science in music therapy. We are trained heavily in music theory and music therapy as well as biology, psychology, social and behavioral sciences, and general studies. After we have completed all the course work, we are required to complete an AMTA approved internship usually lasting 6-9 months depending on when the student completes the required 1200 hours of clinical experience. Lastly, we are required to pass a board certification exam to become a board-certified music therapist (MT-BC).

Throughout this article, I have continuously referenced the national association, AMTA because they do a fantastic job informing people who we are and what we do as a profession. If you have any remaining questions about music therapy, www.musictherapy.org is a great place to start. You can find therapists in your area, see where they are working and whether or not music therapy is funded through a waiver program or an insurance provider. I also have a website if you would like to know more about me or are in Austin and want to learn more about what I do in the area. Roads of Connection Music Therapy is where you can find my information. It’s common for people to still have questions about our field, don’t hesitate to contact a music therapist in your area to gain more insight.

Contributed by Danielle Baumgartner, MT-BC

Here is your sign…

Do you have a medically fragile child in your home?

Making guests/visitors remove their shoes before entering your home and wash their hands before any contact with your child can be difficult to communicate.  Why not get creative?  You can create fun collages, use computer clip art, posters or even yard signs that ask guests to respect your house rules and protect your child.  You can also create a small “STOP” sign in your front entry way that lists out your requests for visitors.  Have a nice place for guests to place their shoes, and have a bin of new socks available to give to guests to wear (bare feet can be as dirty as shoes, especially in the summer).  This isn’t about offending guests…it is about keeping your child healthy – so don’t be afraid to come up with effective ways to communicate your child’s needs to anyone who enters your home!

I learned a long time ago, my child’s health and well being are a lot more important to me than potentially hurting someone’s feelings that may put my child at risk. It’s not personal- it’s just what has to be done!

Here is a great sign that is free to download & print:

Use your Noodle!

As soon as something is labeled as medical the cost immediately jumps up. There are so many things that families need and use that don’t necessarily have to be “medical” to work, but they do need to be affordable.

Many of us worry about our kids falling out of their beds once they move out of the crib. Yes, there are medical beds that are AMAZING. Some have side walls, hydraulics to lift or lower, some even have roofs to help with elopement. But for many of us, we don’t need that much. We just need something to make sure that they don’t roll over and fall to the floor.
You can find all kinds of options in baby stores, on Amazon, Target, etc. These range from $20-a few hundred dollars depending on how fancy you get. There is a much easier and cheaper option. Pool noodles! Some places sell extra thick pool noodles too that are even better. I know Walmart usually carries the thicker ones during the summer months. You simply tuck these under the fitted sheet and presto you have bedrails. If you or someone you knows can sew, you can even sew the noodles into place so that they don’t move around.

Here’s another great use for pool noodles- a sensory pool. If you buy a handful of noodles at the end of the summer when stores just want to get rid of them you do this project super cheap. All you need is pool noodles and a kiddie pool (also cheap to grab at the end of the summer). Cut the noodle into slivers about 3 inches long. A noodle is typically 5-6 feet which gives you 20-25 pieces per noodle. You can use a variety of colors too. Depending on the size of the pool you select you may need more or less noodles. Just cut them up and toss them into the pool until it is filled to the depth of your choice. When you are done you will have an affordable ball pit that is sure to please.

Pool noodles can be used as (or for):
– Positioning rolls (cut to size)
– Slipped under fitted sheets to prevent a child from rolling out of bed
– Cut into discs for large game pieces
– Cut into discs and thrown into a drained/dry child-size swimming pool for a “ball pit”
– Cut into discs of varying size and thrown into a storage bin for a sensory activity
– Physical therapy exercises (lift above head, pick up, put down, wave back and forth…)
– Split in half lengthwise to place over sharp edges on dressers, tables, etc.
– Cut into varying sizes using various colors to use as a sorting activity

Gentle (non-trach) Suctioning

If you have to suction your child, even just on occasion, you know how hard the suction catheters and tips can be. The suction catheters are hard plastic narrow tubes that we use to go in a trach, or into the airway through the mouth or nose. When we used these with Casey she did not have a trach so we would feed them through her mouth, into her throat to find whatever it was that we needed to clear for her. She needed suctioning a LOT. When we had to use the catheters frequently we would not be surprised when we would see spotting (small amounts of fresh blood).

Then there is the yanker, ugh that thing is awful! In the hospital when Casey was a baby they had these wonderful soft tipped oral and nasal suckers. Luckily the hospital sent us home with a handful. When our DME sent us our monthly suction supplies I was horrified that they wanted us to use the long hard plastic yanker with the huge claw at the end. No way!!!!

We found the number on the soft tips from the hospital and called the company that makes them. Neotech quickly became our favorite company (and still is). They sent us samples and then they worked with our DME to make sure that we could get the soft tips, and that insurance would cover them. If you need help getting the softer tips, call Neotech and see if they can help you as well.

Once we got the soft tip issue resolved we still had to deal with the hard catheters. Then one day we had been admitted to the hospital and our nurse did something I had never considered. Casey did NOT have a latex allergy- if your child does have a latex allergy this is not an option for him/her. Our nurse pulled out these soft, flexible, red catheters. The catheters were not for suctioning, but were general purpose (mainly used for help with urination). These catheters also did not have the numbers on the side like the suction catheters nor did they have the thumb valve, so at first I was a little unsure about how she was going to get these to work. The wide end of the catheter slipped perfectly over the end of the soft suction tip (letting us use the sucker as the thumb valve). Then we fed the catheter down Casey’s airway just as we did with the hard plastic catheters. Since we did that so often we knew how far to go without needing the numbers.

We needed a letter from our doctor explaining why the general purpose catheters worked better for Casey than the suction catheters, but once that letter was sent to insurance everything was covered. From then on, all of our suction tools were gentle and there was no more spotting.

Things to Know if You’re on the Go

We all spend plenty of time in the car, in waiting rooms, etc. Sometimes you may leave the house and pack enough to be out for 2-4 hours then find yourself still long for home after 6 or more hours. If you have a child with medical needs along with you it can make any outing more challenging. Here are a few tips that can help.

If your child does not do well sitting up for long periods of time and you have to travel or spend more time that your child can tolerate in the car there are some car safety options that a lot of people don’t know about. One is called the E-Z-On Vest. This car seat harness will allow your child to lay down on a bench seat while still be safely secured. If you have a smaller child you may be able to use laying down car seats like the Hope Car Bed. There are a wide variety of special needs car seats that allow for more reclining than typical car seats and that provide additional support in select areas for children that need it.

Carry a stuffed animal, or a few. Different shaped stuffed animals can be used as positioning devices, to hold tubing, I’ve even used them to mop up a spill with there was nothing else available. I can’t even count the number of times we used them as pillows when the exam rooms didn’t have pillows on the tables.

Wipes can be super handy too. If course there is the obvious use with cleaning up diapers, but they can be used to clean up spills, or even to freshen up. We’ve all been there- sitting in the hot car/sun and you know you may smell a little, do a quick armpit wipe and you’ll feel and smell much better!

If your child is in diapers, and you find that you can’t be sure that there will be an accessible changing option while you are out consider carrying a small camping cot or a yoga may in your car. In a pinch these options can be pulled out to provide a clean and comfortable area to change a diaper on the go.

Here are a few other suggestions on items to keep in your car. A package of disposable underpads (these things come in handy for all types of needs), car chargers for any equipment you can’t be without (suction machine, feeding pump, iPad, etc), bottle(s) or water (for use with pills, to drink, for spills, etc), for families here in Texas keep some sort of cooling device (a battery powered fan, a cooling rag, etc). If you have a Go-Bag, be sure to keep it handy when you are out of the house as well.