Eat Happy!

Eat Happy!

Disclaimer

**The information provided in this BLOG is in no way intended to diagnose, treat, or cure any illness. This information should never replace the advice of a doctor. Please use this information as you see fit. This information will pertain differently to each child, each adult, and each family.**

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Friday, November 30, 2012

My Thanksgiving Butterball

Thanksgiving is a large holiday for our families. As long as I can remember, I have been doing the “double dinner.” Growing up we always visited both sets of grandparents. When I got older, one set of grandparents came to live with us......... and so came all the family Thanksgiving guests. As a child, there were thirty or more people hustling all about for the holiday. Having the party move our to our home was a blast...... at least as a kid with little cooking responsibility!

I was always excited to share the Thanksgiving mania with my children. Last year was the first year we had the opportunity to do that. Being able to make it tradition this year was even better. Having him as part of both family dinners is amazing. Fortunately, our families are both within a 90 minute drive from us and each other.

Watching Ian play with Thanksgiving feast is pretty awesome. He is very interested in picking up the kernels of corn and touching the mashed potatoes. His actual Thanksgiving dinner was Cheez-Its and Cheese Curls. A true feast for my little butterball.

There were a few beautiful days around the holiday and we were able to take Ian outside. I was able to catch some great family moments on camera.

Contemplating life with Grandpa

Running around

Watching the Parade

Playing in the leaves

Horsing around with mommy

Family Photo

Slide time

Tunnel

Sporting my penguin hat

Playing with glowing battery candles

sesamestreet.org

Grandpa, Nonna, and Uncle J

World Prematurity Day 11.17.2012

New York, New York

World Prematurity Day is a day to remember the more than one million babies who died this year worldwide, from being born too soon. Tom and I are very blessed to have our little preemie miracle with us everyday. I wanted to share some of the photographs our family created to honor the special day. I also wanted to share some awesome photographs of the world recognizing the special day.









Canada

Prague

Italy

Turkey

Australia

Macedonia

Poland

Italy

Dublin


Saturday, November 17, 2012

Sensory Processing Disorder: Weighted Products

Ian is a child who has low registration of senses in nature. This means he requires a higher volume and/or intensity of sensory input to meet his sensory needs. Children of this nature are typically low tone and require more input (intensity and duration) to meet their sensory needs. These children also usually crave "heavy work" and proprioceptive activites to learn where there body is in space.... such as constantly being in motion. Low registration tendencies also coincide with high pain tolerance.

Sensation avoiding may or may not tie into various senses. Sensory processing disorder can be the craving of sensory input (Ian) OR...... it can be avoiding sensory input. Ian does have sensory avoidance when it pertains to oral sensory processing.


Being used as a weighted vest and compression garment.  The weighted portion is folded underneath the vest itself.  This is usually for sitting activities.

Being used as a weighted vest and compression garment.  The weighted portion is folded underneath the vest itself.  This is usually for sitting activities.

Being used as a weighted garment only with the weighted portion hanging.  This is usually for upright activities.

Being used as a weighted garment only with the weighted portion hanging.  This is usually for upright activities.

Being used as a weighted garment only with the weighted portion hanging.  This is usually for upright activities.

Being used as a weighted vest and compression garment.  The weighted portion is folded underneath the vest itself.  This is usually for sitting activities.



The weights in Ian's vest are removable and can be used in combinations. The total of the weights is 3 pounds. This typically is more weight than needed for Ian's body weight, but was the best performance at OT/PT. The weights can all be removed and placed in the pockets where they are needed most.

**This vest is from Velvasoft**
Velvasoft

Ian also enjoys his weighted blanket.  He likes to sleep with it at night and hugs it during nap time too.  The blanket is quilted with Poly pellets in each compartment.  There is no stuffing.  The design of the blanket is based on weighted proportions for the child's size and the desired area size of the blanket.  Orange is one of his favorite colors.  The blanket can go in the washer and dryer on regular settings.  The colors stays vibrant.  The company has custom made and premade blankets available.

Peek-a-boo

Watching a movie

Having fun with my new blankie
**This weighted blanket is from DreamCatcher**

Wednesday, November 7, 2012

Ian Modeling His New Benik Belt

He is such a clown!!!!  The Benik belt is a medical support device for G, GJ, J tubes.  It is made of neoprene and has stretch to it, and also velcro.  The belt stays in place and doesn't shift around.  The little circle portions come on and off.  The belt is adjustable and is able to grow with the patient.  The belt also comes with a turtle shell that covers the opening if you chose to use it.  When sitting and lying down, it kinda gets in the way sometimes.

An OT in Virginia invented them and now Benik sells them.  Insurance and/or Medicaids may cover them under Durable Medical Equipment or Federal EPSDT (Medicaid safety net).

The first one we had lasted 6-12 months or so.  They can be washed in the machine and hanged to dry. If sweating occurs to a degree of discomfort, we found cutting the top collar off a turtleneck helps protect the underside.  We took my dads old turtlenecks, cut off the collars, and put them around Ian's belly, under the belt, as a barrier during the summer months.

If using an underdressing, we found we needed to cut a small hole in it in order to feed the extension through and into the button itself.  They are also waterproof for pools and baths.  We also found that they work perfectly fine with button covers. and pads, or IV split gauze, if you use them as button absorption protection.

There are many wonderful belts on the market.  Many moms and nurses make awesome belts and support devices.  I have a lot of their links on my supply resources page here on the blog.  Since Ian is very short and small, the torso measurements never fit right.  And Ian needed the elastic!  He sleeps in them and wears one 15+ hours out of the day.

I did put together a sample approval letter with some language that can be changed as it pertains to you.  let me know and I can always email the file to you if you are interested.

My little model..... GQ, move over!!

Someone has the giggles

Benik Belt lying out flat, with flat flap cover

Benik Belt velcro clasp

Benik Belt opening for G, J, GJ tube

Benik Belt front flat cover

Benik Belt front flat cover placed over belt opening

Benik Belt Turtle Shell hard convex cover

Benik Belt Turtle Shell hard convex cover over belt opening

Benik Belt Turtle Shell hard convex cover over belt opening


Sunday, November 4, 2012

Surprise “Philly ‘G’ tube”

Over the last handful of weeks, Ian’s G tube button (button = feeding tube) has been leaking. The leakage is coming from around the stoma (hole in his belly) from the inside, out. We have been noticing it on and off. At times, his button cover is saturated or maybe even just damp. At other times it seems to happen when he lies down. When we are cleaning his button, air and “belly juice” will ooze out.

While this sounds very gross, it is not entirely abnormal as long as there cannot be a “loss” counted.
Lately, his stoma has been looking a little more irritated. However, he doesn’t squirm when we clean it a few times a day. He always has some redness around the stoma because his skin is super fair and very sensitive. The small red halo is as good as it is going to get. The red halo has been widening recently. We have also noticed that the button seems to be being “pulled down.” This sounds strange, but it is almost as if it flops out and hangs a bit when he stands up. We have been thinking that the balloon is not holding water the way it should be. After checking it a few times with perfect results, we decided to place a new button. That was three weeks ago. The same issues continued as irregularly as before.
Tuesday, I noticed some wet spots on the kitchen floor. I found this odd and a little nerve racking. I walked to check his book bag and noticed that nothing was out of the ordinary. Sometimes, Ian’s bag will leak or something will disconnect inside and the formula pools inside the book bag..... leaking..... and causing a disaster. Reassured by the dryness, I resumed activities.
About five minutes later, Ian came over to me in the kitchen again. When his belly feels very full, sore, or bloated, he will lift his shirt and push it out for kisses. Since he came over and lifted his shirt, I bent down for kisses. I immediately felt the wetness and smelled the formula.... and I say "formula" loosely. Tubie mommas know that when formula leaks from the stoma, it never smells like formula. We say formula is leaking, but it’s really vomit. I know this sounds terrible, but formula that leaks from the belly with bile and stomach juices, is essentially vomit. It is just expelling from a different location. I know, gross huh?
I knew immediately what the floor spots were........ formula/vomit that was leaking from his button. Once I stopped the pump and detached the feeding extension, I saw the dripping wet button cover. I slowly peeled it away and cleaned the button and stoma. I was able to successfully keep it from running out around the stoma. Ian continued his meal and I made a phone call to The Children’s Hospital of Philadelphia. 







An example of a dry button cover around and supporting Ian's G tube button.... they partially serve to absorb any leakage the tube may produce or allow




I got a phone call very early the following morning. The nurse practitioner asked some questions and asked for some photographs. They said one of two things was most likely happening. The button was either too big or too small. There are two parts to a G tube button: the stem and the button itself. The stem is measured in two ways: circumference and length. The circumference is called the “french” and the length is measured in “centimeters.” The length of Ian’s button was most likely the culprit. 







G tube Button measurements


She mentioned that if it is too long, the end of the stem would back up against the back of his tummy. This makes the front part of the stem push outward from his belly. The loose gap from pushing outward causes leakage. If the button stem is too short, the balloon inflating the button to hold it in place is inside the tract.
When the button balloon inflates on the inside of the belly, retention holds the button in place. There is a tract, or path, that runs from the outside of the body, through to the inside of the stomach. The stem runs through this tract. The best correlation I can create is an ear piercing. When there is no earring in, you can feel the tract if you squeeze the earlobe together. This is a good example of a tract. Ian’s belly tract, while unable to feel, is very much the same. When the button stem is too short, the balloon (end of the stem) cannot make it all the way inside the stomach. As a result, the balloon inflates inside the tract, instead of inside the belly. This doesn’t create a tight seal and food can leak from around the balloon. 








An example of two G tube buttons, showing inflation of the balloon inside the stomach, with the stem running through the tract......... correct positioning




An example of what the balloon should look like inflated inside the stomach, with the stem passing through the tract




So as you can see, neither of these scenarios is favorable. The last possibility is that the french is too small. This would mean that the circumference of the stem is not big enough to fill the size of the stoma..... causing leakage. This is typically not a problem unless there has been stretching or trauma to the stoma. While Ian’s appears as though it has been irritated, no significant trauma has taken place.
As I expected, the photos I emailed were not helpful. Ian’s stoma needed measuring to find what size was needed. Only trouble is, we live three hours away. And of course, it was Friday morning. We had a few choices.
1)  Visit Ian’s general surgeon in Virginia who initially placed the button tube, have them measure the stoma, and give us a new button. I knew they would not have buttons in stock...... even though they should. I also knew they would not have a measuring device because...... well let’s just face it, they never have what Ian needs. 








G tube stoma measuring device





2)  Visit the local children’s hospital ER and have the stoma measured, or have a radiography study done with barium to see the size of the stoma, and have them give Ian a new button. Once again, this is the same hospital-doctor affiliation. I knew they would neither have a measuring device nor know what test I was referring to. The reasons we go to CHOP mostly have to do with the idea that Ian does not get what he needs here in Virginia. I knew there would be a temporary fix with a surgeon office visit referral.
NO DICE!!! We were headed for options at CHOP......
3)  Visit CHOP next week when we were free and have them measure and give a new button..... only trouble is, we need a temporary fix until then...... and we have already established that we do not trust the department here.
4)  Visit CHOP today and have them measure and give a new button. The trouble here is we live three hours away, it’s Friday, in the middle of a work day, and we need to be there in the next 6 hours. YIKES!
We chose option 4. I quickly made some phone calls and got everything in order. I picked Ian up a little early from school and off we went. There is something about these urgent CHOP trips that is always surprising......... you would think by now I wouldn’t be surprised anymore. Thankfully, Ian had a good ride up and took a nice nap. We needed to arrive by 3:00, 3:30-ish. We arrived at the check in desk at 3:20....... YEA!!!!! They were able to take us back right away.
When she removed the existing button, Ian’s belly was very red and sore. The leakage and irritation had gotten out of control. Thankfully, it was not infected and there was no cellulitis. She measured the stoma length and Ian was clearly in too long of a button stem. Sometimes, as kids grow, they do need smaller buttons. As the kids, or adults, lose belly fat, the tract becomes shorter. The stem no longer has a place to go, and needs to be shortened. Ian embodied this perfectly.
Ian was actually wearing a button two size too long. His current button stem was 1.5 centimeters long. Ian was now measuring between a 1.0 and a 1.2 size. There was some swelling from the irritation and inflammation. When that diminishes, it will be at the 1.0 level. She was able to give Ian a 1.0 size button. The french size (circumference) was fine just the way it was. The slight stretching was from irritation only.
We were sent home with a 1.2 back up button, just in case. (She had originally opened the 1.2 size first, so we took that one home.) You always need to have a back up button in case there is an emergency. The new prescription will be for the 1.0 size and our home care company should be able to get us a back up next week. We always hang on to the larger size, sterile, unused buttons we have because you never know when you will need a larger or smaller size. The whole appointment took 45 minutes. Three hours of driving up and three hours of driving back for 45 minutes. But the reassurance we received from the appointment being at CHOP was well worth it!
We spent some times with friends while we were in Philly and had dinner. On the way home, we stopped and let Ian run around at Target. He had lots of fun. Target has the best family restrooms!!! Whenever we need to try and do a bedtime routine with Ian: cleaning button, meds, pjs, feeding pump...... we always chose Target! After getting him all settled, we finished the ride home. It was a late night, but a productive and well thought out visit.
As a side note, it is also worth mentioning that as we prepared for the trip to Philly, I contacted the surgeons here in Virginia. They did have a measuring device at the office, but it was not sterile and could not be used. I asked, what’s the point of having it if it cannot be used? They said they would need to order one for him and look at it next week........ no thanks!! When I asked if the ER would have the equipment needed to help us, they mentioned that they would probably do a short term fix and then refer back to them........ But then again, Tom and I already knew that! The practitioners at CHOP were horrified to hear that the surgeons and hospitals in a major children’s medical treatment center would not be prepared. Tom and I reassured them that this was no surprise to us, and that is why we drive six hours for a 45 minute appointment.
Thank you to CHOP’s general surgery/ GERD clinic department. You never let us down and continue to surpass all the competition! In the end, Ian has a better fitting button, a healthier stoma, and a happier feeding experience..... Amen!