Wednesday, December 12, 2012

Article: Narratives from the NICU through the eyes of parents


I came across this report and so many of the stories hit home for me  that I had to share.

When you think your alone your really are not. Check out this article:

Narratives from the NICU: Neonatal intensive care units through the eyes of parents

and check out Inspire for some great support from other parents going through similar struggles.


Friday, November 9, 2012

One Year On Growth Hormones

see updated post...Its been almost exactly a year, and I thank all the expert (moms) at the Magic Foundation support group on Facebook.

I think the first couple of weeks were the hardest.  I blogged about it here One month on Growth Hormones.

How much has he grown? Well not sure and why am I not sure because we haven't had much luck with the hospital we are going to. The doctor is great its the staff is a little all over the place and office hasn't upgraded to new technology, everything is hand written. A two hour trip into the city to see him, 45 min wait, and we still don't have correct measurement each time that we go.  They have actually shrunk him!!!  But I know he has grown, he is up two shoe sizes and two sizes in clothes.

Still no horrible side effects I hear about.  I do see signs of puberty which seems to worry me more than it worries the doctor and doctor insists that he isn't in puberty yet.  Why does it worry me?


I understand he is 11 and the signs that I see are probably the "norm" but I"m not used to normal with my boy. Everything comes late. His development is still behind.  Why can't this stage in life come late as with everything else!

So with that being said, those of you who are thinking of growth hormones the journey so far has been (thankfully) uneventful with a few minor blips...

As always please share your stories below...

Update: 2/13/17...We had 3 endocrinology doctor changes since this post.  We came off growth hormones over a year ago.  At 4"10 he was we were told he was at the end of his growth.  He went through puberty very quick.  His bone age which was one behind was advance two years.  We are told he probably won't grow much bigger then he is now.  I'm hoping thats not true.  Docs have been wrong before.  Time will tell..see updated post here...


Friday, September 21, 2012

Anxiety and Behavior

My son has always had  what we thought as cute but a quirky behaviors but as he gets older its not so cute anymore.  However, isn't it a known fact that  with anxiety comes behaviors?

Looking back his anxieties have always been there but once he reached second grade these behaviors turned into things like kicking (tapping), bolting and maybe a few curse words here and there. Obviously in school he needs to be safe so there were a lot of  "time outs" this past year which just have just  increased his anxiety.

However, its wasn't long before he learned that trips to the principals office would also get him out of  doing work he didn't like. He now just acts out then marches himself to the to the principal and get a time out.... No one ever said he was a dummy!

The school brought in a child psychologist  to consult, his findings were...(making a long story short) .... most of his anxiety stem from his complicated medical history, he has mostly "attention seeking behaviors" and the plan is "ignore and redirect"...unless of course he harming others such as  kicking (tapping) and then its more of an "in-house suspension" where he sits in a room for 30 minutes (also known as an extended time out)....hmmm,   A child with anxiety who is afraid to be alone and they are suggesting 30 minutes!  I'm pretty sure this plan will backfire, but we were willing give it a try...

At home, we didn't see these behaviors, was was overall more anxious tho.  Didn't, want to be  in his room alone or away from me.  It could of been a as simple taking the dogs just outside the door, he would go into complete panic mode, pacing, chewing on his shirt, sweaty palms, completely freak out.

Aside from his anxieties from his complex medical history my theory is, he's getting older, life is getting more challenging, things are more fast paced and there  are more demands expectations of him. Developmentally he just can't keep up on so many levels and puberty is just around the corner.

I have tried talking to him about it asking him why he does behaviors they are seeing at school like he will respond with things like "I don't know why", "because I'm worried" and sometimes he will even  say "mom, I don't know why and want to talk about "....

So we have been creating social stories.  And I have bought some great books through on worries, anxiety and keeping calm, through Social Thinking website.

My favorites so far are When my Worries get too big and Keeping Calm. He has enjoyed these books so much that, he asks "can I bring them to school and show my teachers".

And, since he "likes" to talk about it,  I think the plan will be to continue with the social stories and find  a child therapist, for some cognitive behaviors therapy and of course, one day at a time....


7/14 Update.  The behavior plan to put in a room for 30 minutes back fired on us, my sons behaviors increased, during Christmas break that year, he was happy and engaging and on way back to school Dry heaves, stomach ache, I didn't have to be hit on the head anymore.   It was school that was making him ill.  I wish Angelsense had existed during that school year.    Thankfully we got thru it and into a  better program where he started to thrive, but hasn't been same kid since pre-4th grade.  Never again.  Another example, always go with your gut (mummy tummy)..




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Thursday, August 30, 2012

Special Education and your Preemie

You may find as your premature baby grows s/he may need special education.

Having a premature baby can be an intimidating experience for parents. There are many changes that come with the addition of a child into your family, and when that child is premature, those changes can seem even more overwhelming.

Many premature babies not only face the physical challenges which often accompany pre-term birth, but complications associated with cognitive development as well, sometimes so severe that they require special education.

It is important for parents and caregivers to understand that some of the most devastating factors a child who was born prematurely can face are often developmental delays and learning disabilities.

There are many variants which can influence a premature baby's cognitive development and the severity of any physical disabilities. While many developmental and physical delays will be diagnosed from birth, most cognitive disabilities will not become evident until about the time the child is turning 3.

Some medical factors which commonly cause premature infants to experience developmental complications include:
  • Lack of oxygen during birth
  • Underdeveloped lungs resulting in prolonged us of supplemental oxygen
  • Intrauterine growth retardation which often results in restricted brain growth while in the womb
  • Severity of prematurity
In addition to cognitive development, many physical complications can result in the requirement of special education as well:
Knowing what to expect can help to relieve much of the stress and worry involved. Understanding the difficulties that your premature baby might be faced with throughout his or her lifetime can assist you in making decisions that may greatly improve the quality of life your child will experience.

Your child's physician will begin to evaluate your child from the time of his or her birth, and will most likely continuously screen your child for any indication of developmental, physical or cognitive delays until the child is turning 3. At three years old, most complications will have become noticed.

There are various resources available to parents facing special education for their premature babies.The Individuals with Disabilities Education Act (IDEA) ensures that each disabled child is provided with the opportunity to experience free appropriate public education until that child reaches the age of twenty-one. In addition, there are numerous federally funded programs which offer screening tools and educational resources for children with disabilities.

Once diagnosed with a disability, your child will be assessed periodically to determine a proper Individual Education Plan (IEP). An IEP is an educational plan which is developed by evaluating your child's abilities and any complications or challenges that must be realized. After a thorough evaluation is completed, various assistance tools are presented and employed to ensure that your child experiences the least restrictive learning environment possible.

Birth to Age Three is a federally funded program that provides children with disabilities the opportunity to receive treatment and education that is designed to help improve the child's development from the time the child comes home from the hospital until the child is turning 3.

Some of the services provided by Birth to Age Three include speech, hearing, and vision services, physical therapy, occupational therapy, and educational tools and services. These services are available free of charge in many states, but the cost can vary significantly between states.

Early intervention is key to the success of your premature baby. Parents should always educate themselves about available resources and techniques that can encourage the development of their children. The hospital staff is usually very experienced in dealing with these types of issues, and can be a wonderful source of information.

In addition, a number of state specific resources can be realized by investigating your state and local web pages, or your local social security office.

A great resource was my towns local Special Education Parent Advisory Council  (SEPAC) it was a great resource in getting to know the school district and a great source of support as well.


https://www.angelsense.com/lindaconcheri?tap_a=17059-377e36&tap_s=82902-d4d5da

Monday, June 4, 2012

Activities For Your Special Needs Child

With summer vacation quickly approaching if your like me your looking for things to do with you special needs child.

After school, school vacations, half days are bad enough but what about SUMMER vacation, there are weeks when you need things to do....

For me I just don't have the luxury to put him in any recreational program/summer camp or enroll him in  any "typical" activities, nor can I just drop my son off for a simple play date, he's just far too complicated and needs constant supervision.


Here are some idea's I have come up with through the years:
  1. Find  a chapter and Join the local ARC . They have lots of recreational activities for children with all types of disabilities. My son has benefited from the one on one cooking, swim classes, adapted baseball and soccer, music therapy, and social skills playgroups. For older children they have outings and field trips and dances. The ARC also offers things like family gatherings  and family swim at local YMCA's. (check our your local recreation department or schools as well for challenger baseball, soccer etc..)
  2. Contact your local Department of Developmental Services (DDS), This particular link is for Massachusetts but google search DDS in your state, they are a great source of information and know of agencies that you may be able to contact.
  3. Do a search for a local Pediatric Occupational Therapy Clinic. Many offer play groups and social skills groups. My son attended swim therapy and a few social skills classes at The Kioko Center.
  4. Join your local PAC (Special Education Parent Advisory Council) in your area meet other parents get idea's on how they keep their child busy. Maybe start your own play group.
  5. Contact local horse farms, there are some that offer Hippotherapy and some also offer group  sessions making it fun for the kids, some group sessions and camps.
  6. Music Therapy is a great and fun way to help your child with any IEP goals such as on social skills, verbal skills much more.
  7. If your in Massachusetts check out The Recreational Education Center   a play space for with "our"  kids, in mind.  For $15 they have "open rec" every day from 10am to 6pm! The center is run by an ABA therapists and its a great place to let your child just "be" who s/he is and its quite relaxing not having to explain the quirky behaviors away!! They also offer programs such as social skills groups, summer camps, after school programs and parent support. If your in the area its a MUST to check out and the program accommodates ages 3-22!
  8. Check out local farms, spending the day on a picnic petting animals is a great non-stimulating idea.  Our favorite is Davis Farm Land in Sterling, MA its even has a sprinkler park to cool off on hot days.
These are just a few idea's that come to mind.

Having a special needs child is challenging enough, thinking out of box constantly is grueling...and while putting them in a "typical" situation is good for them most of the time (for us anyway) it can be a disaster and more work than it needs to be....

Hope you have found some of these ideas helpful.

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Wednesday, April 18, 2012

The Benefits of Infant Massage

When my son was in the NICU the hospital offered infant massage.

I was very interested in any type of alternative therapy to help with the pokes and prods my sons endured daily.

So, I did some reading and found that there were many benefits to infant massage so, I took advantage of the service.

Massage has been practiced for centuries in many cultures around the world, such as India, China and South America.

All babies need touch to thrive emotionally and physically. Our babies don't get much touch.
Preemies spend many hours in their isolette and we are limited to how much we can touch them. And lets face it the only touch they get to feel right off the bat it the poke of needs for blood draws or IV or of a cold stethoscope etc...

Massage has some special benefits for premature babies.

A gentle massage gives your your preemie a soothing touch. With a series of gentle strokes and gentle leg and arm movements,your baby can experience many benefits .
What are the benefits of massage for your preemie?:
  • It calms and soothes
  • Creates sounder and longer sleep patterns.
  • Can increase weight gain
  • The tactile stimulation can help brain and visual development
  • The baby can become more alert and active.
  • A general increase in health.
  • It increases bonding feelings for parents
More and more hospital are offering massage within the hospital along with other types of alternative treatment.

Get trained by a certified massage therapist because preemies (most of the time) don't like to be touched.
In my experience when we first started my son could experience anything from drops oxygen saturation's to increase heart rate.

So as with anything check with your NICU team before trying any type of alternative treatment.

Make sure you check out this article on how infant massage therapy reduces stress in preemies.

Here is a great book on infant massage called Developmental Baby Massage.



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Monday, April 9, 2012

Hippotherapy and Therapeutic Riding


"We nearly forgot
what strange thing it is
that an animal, as powerful and intelligent as a horse,
allows another, much weaker creature
to ride on his back."
-Peter Gray
________________________________________________________________________


Hippotherapy
When my son was 3 we were fortunate enough to be introduced to Hippotherapy by his early intervention team.

Hippotherapy is a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input. (Wikipedia).

I can't explain to you in just a few words how much he loved it. Due to his physical limitations he had always had a difficult time running and playing as most children do,  but on the horse the biggest smile would overcome him.  He continued  Hippotherapy until the age of five.

We then decided to try other activities, adapted sports such as baseball (the most he would participate in this sport was sitting on the field and playing with the sand, waiting around just made him more anxious) then it was soccer (he chased the butterflies more than the ball). Nothing seemed light up his face like the horse.

Since my son is already getting OT, PT and Speech in school as well as private OT. I began  researching Therapeutic Riding vs Hippotherapy .

Therapeutic Riding (also known as equine-assisted activity or adaptive riding) is used to teach riding skills to people with disabilities. Therapeutic riding is beneficial for children and adults who present with any of a wide range of cognitive, physical, and emotional conditions (wikipedia).

Once again my son just lit up as soon as he got onto that horse!! During his re-eval (since it had
been 5 years since we had back) I was amazed at how quickly it all came back to him. His first response? "Lets trot and go fast"

What I recently learned....

Horseback riding is recognized as one of the more progressive forms of therapy for special needs.  Being able to control a horse as well as one's own body inspires self-confidence

What I find most important is that its overall an enjoyable experience for our kids and they get to create a special relationship with the horse they ride.

There are:
  • physical benefits; improved balance, strengthened muscles, improved coordination, better motor planning, improved appetite and digestion, help with sensory processing disorder
  • psychological benefits; general sense of well-being, improved self-confidence, development of patience, emotional control and self-discipline, sense of normality,
  • social: friendship, friendship with the animal, overall enjoyment, taking part in care of animal, team work.
  • educational: improved motor planning, improved eye-hand coordination, visual/spatial perception, differentiation
Everybody needs something to be good at this may be my sons "something"!  It seems to just come natural to him
and  his disabilities disappear for that hour or so :)
__________________________________________________________________________

From a horses perspective....Let Me Teach You
by Willis Lamm

When you are tense, let me teach you to relax.
When you are short tempered, let me teach you to be patient.
When you are short sighted, let me teach you to see.
When you are quick to react, let me teach you to be thoughtful.
When you are angry, let me teach you to be serene.
When you feel superior, let me teach you to be respectful.
When you are self absorbed, let me teach you to think of greater things.
When you are arrogant, let me teach you humility.
When you are lonely, let me be your companion.
When you are tired, let me carry the load.
When you need to learn, let me teach you.

After all, I am your horse. 




Monday, March 26, 2012

Book Review: Shut Up About Your Perfect Kid

We have all had those days...admit it and whenever I have one of those days I try to find some humor and turn to The Shut Up Sisters.

 The book Shut Up about Your Perfect Kid: A Survival Guide for Ordinary Parents 
says it all and more.

Its so difficult having a premature baby, but when that baby grows up and has special needs another world opens up.

Most days are difficult but the same amount of days are just as fulfilling. You learn not take the small things for granted, you celebrate every milestone.

I highly recommend this book. It a light read and for when you need a good laugh with with so much support behind it.

You can also connect with the Shut up Sisters on  facebook and "like" them..

They may even be speaking your area at your local Special Education Parent Advisory Council (SEPAC) group so sign up on their website for updates or buy some of their humorous merchandise.


https://www.angelsense.com/lindaconcheri?tap_a=17058-7afa51&tap_s=82902-d4d5da

Saturday, March 3, 2012

Music Therapy and Your Baby

Throughout history, parents have been using music and learning more about how music therapy is used to soothe their distressed infants.

From simple lullabies to music boxes, to recorded sounds and melodies, the sound of music seems to touch even the youngest of souls.

Collin & Meredith
Many parents even choose to employ music while their babies are still in the womb, by surrounding the pregnant mother with soft sounds and tunes, or even placing headphones over the mother's abdomen. The benefits of music have become increasingly evident in these past few years, especially with premature infants.

Modern technology has enabled researchers to realize the true benefits of music therapy. Various studies have been performed that have evaluated the effects of music and sound on babies, and they are indicating that music therapy actually increases the health, and encourages the growth of infants. One example of this is the application of sound in an extra-uterine environment.

Most premature babies are placed in simulated environments during the first part of their lives. The incubators that become their new world are equipped with temperature control, sterile conditions, and numerous types of life support and feeding equipment. When these infants are also exposed to soft repetitive sounds that mimic the intrauterine experience, their health improves, and they thrive. There are approximately 46 medical centers in the world that include music in their neonatal intensive care units (NICU).

In addition to intrauterine simulation, the soft singing of a female voice actually increases the oxygen saturation levels, inspires healthy sleeping patterns, and encourages healthy weight and growth. There are increased benefits when the voice the infant is exposed to is that of the infants own mother.

Studies indicate that the exposure of preemie babies to their mother's soft voice can also help to alleviate pain. This is especially attractive to parents who observe babies that are hooked up to machines and tubes. The calming effect of this knowledge on the parents actually passes through to the infants.

Depending on the severity of the birthing conditions, prematurity, and other health complications, human interaction levels can be extremely restricted in neonatal intensive care units (NICU). This can be extremely difficult for new parents wishing to interact with their babies. Parents often develop a sense of helplessness in these situations. The use of music actually empowers parents, giving them a way to not only communicate with their preemie, but allowing them to know that they are helping to improve health and stimulate development as well.

In addition to health complications, many premature infants are victims of developmental delays. Cognitive development has been shown to improve significantly when a preemie baby is exposed to the repetitive sounds and voices of music. Head circumference, which indicates brain size, actually increases with the exposure to music.

It is important for parents of premature infants who are interested in employing music therapy as a beneficial tool in the treatment of their infants to communicate this desire to hospital staff.

Roman Music Therapy
There are a number of board certified music therapists available to help educate parents and hospital staff on the various techniques of music. There is also a massive amount of information available to parents and care providers listed on the internet.

An excellent source of information and resources can be found by contacting the AMTA.


Your early intervention team may also have information on Music Therapy and if you happen to live Massachusetts I highly recommend you get in touch with Meredith Pizzi MT-BC at Sprouting Melodies. and take advantage of other services that Meredith offers.


Wednesday, February 29, 2012

Neurology Evaluation - PVL

When my son was in the NICU and he got the ultrasound of his brain that most preemies get; We were told that the results were normal. No brain bleeds.

When he was 2 1/2 it was recommended by the Infant Follow-up clinic at Children's Hospital (a clinic that follows preemies and how they develop) that we get a neurology assessment. We saw neurology and they recommended an MRI.  At the time, my son, had been recently decannulated and an MRI that would require sedation just didn't appeal to me and psychologically I personally just wasn't ready for "one more thing" to. 

Well 10 years fast forward, trach free, g-tube free, I am finally ready for the answers to his struggles and delays that are constantly on my mind.

We had our evaluation about a week ago. Thankfully the MRI my son had last April for Endocrinology  was useful to the neurologist so no additional tests were needed.

Immediately the Neurologist said  "well look here, he's got scarring in sensitive parts of the brain that is causing his delays"

In neurological terms: "MRI shows patch T2 signal abnormalities in the left periatrial white matter, probably representing periventricular leukomalacia and gliosis, consistent with his early history. Thus we see that there is indeed a neuroanatomic basis for these issues".

Ok, brain damage? I can literally make myself crazy thinking about when, where, or even how this happened, but I know its basically common sense given his complex medical history. Still it doesn't make it any easier.

On the other hand his delays, motor planning and sensory issues are now all explained. But what does this mean long term? I have learned from past experience that the lungs grow new tissue and the scar tissue becomes non-existent  but what about the brain?

Whats does this mean developmentally? The diagnosis remains the same; neurodevelopmental disorder, secondary to complex medical history, ADHD inattentive type, Sensory processing   disorder.

Where do we go from here?

All I can think to do right now increase his therapies; We have all heard that the brain is always transforming itself, which is why people recover from strokes etc....so now along with PT, OT,  SP he has  in school, he will get private OT and now am looking into a therapeutic riding program. 

Ok, we have a plan...for now.  Followup with Neurologist? Six months.




Wednesday, February 22, 2012

One Month on Growth Hormones...

After lots of research and going back and forth we decided to start growth hormones for my son. Its been a month now that he has been on them.

I have to admit it was rough the first couple of weeks.

It took two of us to pin my son down for the shot and lots of bribes. Stickers, computer time, even trips to the store.

I literally felt like mommy dearest chasing my child around the house with a syringe and then pinning him into a corner so I could jab him.  Awful, just awful.

We went away for a few days at Christmas to visit family. When it was time for the shot my son was screaming "no, no, no!!!" meanwhile a boat load of people sat right outside the door in the living room. ugh...

The funny thing is the shot itself doesn't bother him! The needle is teeny tiny. It was more the anxiety building up to the shot. Once it's done he said to me (each time) "that's it?" ...Then I had to go have a tall glass of wine. 

All this drama lasted about two weeks.

Then one day I had a thought...give the shot after his bath? After all he's already naked and I won't be fighting to lift his shirt or pants.  It worked, he flinched at first, but it was over in 20 seconds verses 40 minutes.

Since that night, there isn't a problem, he lifts his shirt willingly and then goes and plays. However, I still need my glass of wine...or two.

As for results? I'm told it would take a while to see results from the hormones (around 6 months). Thankfully, none of the serious side effects have reared their ugly head. What I have noticed is increased hunger and he has put on 2.5lbs. That's alot in a month. I'm hoping an increase height will follow soon.

Update: 2/13/17...We had 3 endocrinology doctor changes since this post.  We came off growth hormones over a year ago.  At 4"10 he was we were told he was at the end of his growth.  He went through puberty very quick.  His bone age which was one behind was advance two years.  We are told he probably won't grow much bigger then he is now.  I'm hoping thats not true.  Docs have been wrong before.  Time will tell..see updated post here...


Saturday, February 4, 2012

Using Social Stories...

Social Stories can be used in many situations.

I like to use thems whenever my son has to transition into something new.

The first time we used a social story was when, my son was going through the process of removing his g-tube.

Our gastroenterologist, had been concerned that my son would become upset when his g-tube was removed, after all it had been a part of him since he was three months old. So just removing the g-tube without preparation wasn't an option for us. This was not something that had ever occurred to me but it did make alot of sense!

GI referred us to psychologist who specialized in feeding disorders and she was the one that recommended that we create social story about the process of removing the g-tube.

 So...I created the story and included all information I could about Collin's journey.


Our doctor liked my son's story so much that I  he is now using it to share with other parents who are facing similar challenges.


There is a great books with social story ideas you can purchase.

A place you can search for more idas is on  Board Maker Share.  I have used some of the examples on this site for situations like why we do not touch to dealing with emotions and anxieties.   Browse through the posts even submit your own social story if you have one to help others.

I also came across this You-Tube  social skills for behavior , that I just love...so did my son. There are lots of different types of social stories on You-Tube as well.

Take advantage of social stories. They really do help!


Thursday, January 26, 2012

Feeding Therapy

Does your child need feeding therapy? Has your child experienced an oral aversion (refusing to eat)? Has a highly sensitive gag reflex? Has or still has reflux? Been diagnosed with failure to thrive? Then chances are you may s/he may need feeding therapy.

The "journal to oral feeding". I can tell you from experience. Is not easy. Its a long journey and once again a journey that doesn’t resolve when you are ready, it’s all up to your child. If your child is tube fed than it might take longer.

 This is how it went with my son; He had a g-tube, he had reflux, he was (is) failure to thrive, he was trached and on a ventilator.

My son would suck on a pacifier early on and once the trach was placed we slowly tried to give him the bottle. He would take about an ounce or so, but that was it. It was just too hard for him to coordinate that suck swallow and breath thing and chances of aspirating were high.

So...we backed off for a while. We continued to work with early intervention (EI) on oral motor exercises.

When Collin came off the ventilator we introduced the bottle again. No interest. Sippy Cups? Nope. We continued introducing anything and everything we could think of. Eventually he accepted. His first food? An M&M! We were ecstatic! Long story short…there is no right way or a right answer with feeding therapy. Just keep plugging at it. Don’t give up.

Feeding Therapist

A feeding therapist is typically, an Occupational Therapist or a Speech and Language Pathologist.
We started with early intervention and when our son turned three we were fortunate enough to have a  therapist who specialized in feeding come to our home. (she’s still here..every Monday).

How does the therapy work? Its different with every child. Its truly an art not a science.
De-sensitizing and working on those facial muscles seemed (an still is, so important) for my son.
The tools that worked best for my son were the z-vibe and also the chewy tube.

For some great tips on feeding check out these New-Vis.com and Mealtimenotions.com both great resources for tube fed kids.

Feeding Therapy Programs

If you tried all you can think of and don’t think your getting as far as you think you can go (listen to your mummy tummy) these programs or programs like them at your local Children's Hospital.

Attend workshops if you can. I have attended some and they are informative and worth while. Below are some recommendations of feeding programs I have heard great things about:

Childrens Hospital Richmond - Feeding Program

Kennedy Kreiger Feeding Disorder Program

Childrens Hospital Feeding and Swallowing Program

Prior checking out these programs, don't forget to check with your medical teacm, chances are they have resources and feeding therapy programs that are not listed and may also be familiar with the programs above.

For a great source of nutritional information check out Feeding Underweight Children.





Friday, January 20, 2012

Choosing a Home Care Agency & Team

Do you need to hire a home care agency for your baby once s/he comes home?

The thought of such can be overwhelming, after all on top of caring for your medically fragile child, this could mean there would be 'strangers' (nurses) in your home caring for you child as well.

For us the visitors didn't stop there. There was the oxygen delivery guy and weekly deliveries medical supplies. Eventually our German shepherd just stopped barking.

Take a deep breath, most likely before you leave the NICU a social worker at the hospital will have an agency in place for you before you get home.

Here are some tips on how I worked with our agency:
  • Once the agency was established and nurses were almost ready to start I asked the agency to have the potential candidates meet us at the hospital prior to them coming into my home.
  • I asked the nurses questions about their background: Have they worked with children before? For how long? Were they experienced in pediatric ventilation and tracheostomy's? G-tubes? Did they smoke?
  • Most important, I observed how the nurse interacted with my son and how comfortable my son was with them. (You can usually tell if this person will be a good fit within the first 15 minutes or so).
  • If something doesn’t feel right to you investigate, ask more questions, talk to the agency about it or move on the the next candidate... Use your instincts.
If at anytime we were in need replacing a nurse at home, we would have the agency send potential candidates to our home prior to starting their assignment.

Once at home, be prepared to do some weaning of staff. Reality is some nurses will work out, some won’t, but don’t let this discourage you. It takes time to establish a “good” home care team.

Sometimes there are lulls in time and it may seem as though your nurse is just a babysitter and your not sure what you can have her do. It can feel awkward, but the most important thing is that you like and trust your nurse. Don't be tempted to reduce your hours in any way. This could result in losing your nursing coverage, besides good nursing can be hard to find.

It isn't uncommon for the home care agency to do a background and skill screening on the nurses (this is what happened in our case). If your not certain, contact agency and ask. Then conduct your own “type” of background check if you feel you need to.





Monday, January 16, 2012

What is a tracheostomy?

"Your child needs a tracheostomy"...That had to be one of the worst things I ever heard and one of the hardest decisions we ever had to make.

All I could think about were those horrible smoking commercials and the lady with a hole in her throat and an artificial voice. Was my baby going to be like this?

I can go on and on and tell you all I know about a tracheostomy but instead I will refer you to a fabulous website called tracheostomy.com. There is no way I could explain about a tracheostomy is better than this website can.

This website will give you all the information you need to know and more, what happens during/after surgery, the care of...even about decannulation.

There is also a message board on this website that you can participate in where I guarantee, you will meet some amazing people.

I just can't say enough about the creator of this website, except that I am thankful to her. Her website truly helped me through some difficult times.

What I can share with you is my own personal journey about a tracheostomy.

It was certainly a difficult decision to have the surgery done for our son, and once we were over the initial shock of the whole thing we could now see that it was truly the best decision.

We were finally able to see his beautiful face (entirely), enjoy his coo's (as only a baby can do) see him smiling! He was able play on his belly, learn to roll over, he could suck on a pacifier and drink from a bottle (sometimes). We had some sense or normalcy, finally.

Most important he no longer needed to be sedated and we could hold him more often. He also started to put on weight and grow. It was the best feeling.

I hope you get to check out tracheostomy.com and I hope you have as great of an experience as I did.
I have also met some wonderful friends through this website an I pray you can do the same.

For some inspirational stories check out Trachkids.org 







Sunday, January 8, 2012

Sensory Processing Disorder (SPD)

Wikipedia's definition of Sensory Processing Disorder (SPD) is …a neurological disorder causing difficulties with processing information from the five senses (sight, sound, touch, taste, smell), and the sense of movement (vestibular system), and/or the positional sense (proprioceptive).

It is also known as Sensory Integration Disorder or Sensory Integration Dysfunction.

It has been said that preemies are at risk for Sensory Processing Disorder because they are born with a very fragile nervous system to start with, then they are poked and prodded everyday for months. This certainly can’t help their sensitivities!

Does your child cry a lot, is s/he constantly leaning against you, trouble sleeping? Does s/he find rocking or swinging calming? Does s/he flap and see, over stimulated? Love to play with messy things, mud, play doh or food! (my child does) or do they hate these thing and prefer to no go near it at all? Is s/he out of playing hard one minute, crashing into things (and people) the next? Do crowded places bother him? S/he loves to be hugged or hate it?…These are just a few signs and all can be an indication of Sensory Processing Disorder.

My son he had all of the above symptoms. There are certain triggers that set him off too. For example flashing lights, when a sickness is coming on, spinning, after surgery and just recently I noticed a trigger for him is blue food dye (this could be food allergy related, but is certainly triggers his SPD!).

So from a “mom’s” point of view… If you suspect your child has SPD, I can’t stress enough that you try to find an occupational therapist (OT) who is SIPT certified or someone supervised by a SIPT CERTIFIED therapist.  It makes all the difference in the world.

An SIPT certified OT is additionally trained to diagnose and treat SPD.

While most OT's know about SPD, they can’t diagnosis and are only trained in the basics of the Sensory therapy.

I can personally say there is a difference in an OT who is SIPT certified verses one who is not.
How do you find a certified Occupational Therapist?
If you live in Massachusetts, North Shore area I highly recommend getting an evaluation from Dr. Tara McCormick at the Kioko Center.

While your child is in treatment try to remember that sensory therapy is an art not a science. What works for one child doesn't necessarily work for the next. Try to continue some treatments at home to help ease SPD symptoms.

Things we used in therapy were swings,  weighted vests,  modulated music.....and many more.

Below are some items that we use in our home to help our son when he's in sensory overload;.

Body Sox (small, medium or large) My son loves to put his stuffed animal in this and climb in.


Play Tents and Tunnels..

 In&outdoor swing; for days when they need calming and soothing activities.

Trampoline;I really like the handle on this trampoline especially for children (like mine) who has balance trouble.

Frog Bean Bag Set: I will layer these on top of my son when he is overstimulated or when he is sleeping I use it in lieu of a weighted blanket.

For additional information about SPD check out the The SPD Foundation.

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Saturday, January 7, 2012

Blendarized diets for tube feedings...

Ever think about trying a blended (homemade formula) diet for your tube fed child?

 I did, mainly because once in a while I wanted my baby to get some 'real food' experience. But found a couple of other benefits.

After some research I found a few forums that recommended easy recipes.

I would make a formula at least once a week (but would not keep it for more than 12hrs, suggested keep is 24). It was great to see my my son experience real food.

There was period of time when my son wasn’t digesting his formula as quickly as he should have been and his reflux was pretty bad. He was on Reglan (a medication that increase the movement of the stomach) for a while.

I was amazed at how well my son tolerated the home-made formula, his motility was better and it improved and his reflux a great deal.

Below is an easy formula that I used for my son.

I got it off a newsletter from a support group called Kidswithtubes.com. (the support group is no longer active, but serves as a great resource).

Our nutritionist did nutritional analysis on this recipe said she was all for it, we did a little tweaking of the recipe to add more calories and nutrition.

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The following formula recipe uses baby food and other readily available grocery items to produce a formula that provides approximately one calorie/cc.

This formula contains a variety of foods to provide the calories, protein, vitamins, and minerals your child needs. Depending on your child’s daily intake, a vitamin/mineral supplement may be needed.

Remember; please consult with your doctor or nutritionist before changing formulas or implementing other nutritional changes in your child’s diet:

Blended Tube Feeding Formula:
  • 3 C whole milk (or soy milk)
  • 2 C fruit juice
  • 2 jars strained vegetables (8oz)
  • 2 jars strained meat (5oz)
  • ¼ C Light Karo syrup
  • ¼ C non-fat dry milk powder
  • 1 tbsp vegetable oil (I used canola oil)
  • 6 tbsp baby rice cereal
  • ½ multi vitamin with minerals (I used 1 packet of carnation instant breakfast)
Mix well, pour into clean bottle or containers, cover and refrigerated. After mixing, the refrigerated formula may be safely used for 48 hours. Any formulas left over after 48 hours should be discarded
To provide a more balanced diet, rotate meats, fruits and vegetables that are included in this formula.
  • strained meat; alternate chicken, turkey, veal and beef
  • fruit juice:;alternate orange, apple, cranberry, grape and pineapple
  • strained vegetables; alternate green beans, carrots, peas, squash and sweet potatoes.
Prior to each feeding, the amount of formula needed should be measured into a separate container, covered and slightly warmed slightly.

To warm the formula, place the container with one feeding into a pan of hot tap water for 15-20minutes or use a microwave on low setting for approximately one minute (when using a microwave be sure to shake the formula or stir with a clean utensil to avoid hot spots. Do not overhead the formula as it may cook, get lumpy and lose valuable nutrients.

Because of the chance of bacterial growth and food poisoning, do not use formula removed from the refrigerator for more than two hours.


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For nutritional information and more about blended diets check out Feeding Underweight Children.

Inspire has some great support for any type of GI issue from reflux to tube feedings and g-tubes. For many parents all they use is homemade formula's and even create their own!

Feeding Tube Awareness has some good information on there site to guide you through feeding tubes as well.

Also check out; mealtimenotions.com Marsha Dunn Klein, MEd, OTR/L and Suzanne Evans Morris, PhD, CCC-SLP have written a book that contains other recipes for homemade formula’s.

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