Eat Happy!

Eat Happy!


**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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Thursday, December 12, 2013

December 2013 CHOP Updates:

Last Friday, we visited the GI department and Diagnostics. Today we visited the Endocrinologist...

They were all extremely pleased with Ian's progress! He has grown over 2 inches in the last 6 months and is now over 31 pounds. That puts him in the 50% for weight and the 18% for height....... almost on his own genetic-potential curve. his growth velocity (rate of ascension on the growth curve) is phenomenal. They sad Ian's growth is a classic case of what happens when a child can stay healthy enough to pump in loads of "real-food" calories!

In the spring, we will be repeating a gastric-emptying-scan. The GI is hoping that as he has progressed and developed, that his emptying will have done the same........ and improving. I'm hoping we can get him to eat more of the egg-toast meal by then..... feeling optimistic!

They only increased one med based on his weight gain. In the spring, after the scan, the GI doctor is hoping to begin weaning off some medications. That will take some time, but will be yet another step to removing the G-tube. Right now, we are continuing to move toward giving all meds and fluids by mouth. All of his food has been by mouth since May. We are now trying to give his overnight meds by mouth. There is not a way to move these meds. They are time based and need to be spread out as so. We have been giving them via G-tube when we take him to the potty every night, so we are trying to squeeze them in by mouth now at those times. Thankfully, they are only 5mLs each.

In addition, Ian takes all his daytime meds by mouth....... and I mean *he* takes them. He holds the syringe and pushes it into his mouth all by himself!

For the most part, this would only leave us with using the G-tube for venting/burping/releasing air. We do this at least once a day. This will be just as hard to "give up" since it is needed for anatomical reasons. The fundoplication reflux wrap makes it purposefully difficulty to get things up from the stomach.

Ian's visceral hyperalgesia with his bowels is very well managed. He has been able to move away from the Miralax completely. We have also been able to wean down from the flax seed oil and are only using a food product called Fruit-Eze. It is natural and we can mix it in his applesauce.

We did another growth hormone factor blood draw at the Endocrinologist today. This is routine to make sure we are giving just the right amount of growth hormone injection. The values will show if he is getting too much, or if he needs more. We also did a bone age x-ray today (an image if his hand). Doctors can tell how old a child is by the bones/growth plates in their hands. Last November, Ian's was measuring several months behind. He suspects that this one will be much closer to normal for his age.

The Endocrinologist did tell us that in 6-12 months, if he continues to do well, we can do a 6 month trial without the growth hormone. He told us that with Ian's Small for gestational age and Intrauterine growth restriction diagnoses, growth hormone can easily be indicated through puberty. However, with Ian's GI/feeding/nutritional progress, that could be enough to do the job.

We are also going to continue doing the stress dosing steroids when he is sick. There has been concern it is being used too much, but after reviewing the usage details, it was decided that we are doing it correctly.... it is just unfortunately that Ian is at the age where little kids share everything! Vomiting with almost *any* illness/cold/virus puts him at a huge disadvantage too. Vomiting is very taxing on the body and Ian needs the extra help.

The plan is to continue inching forward as we can..... sometimes big steps, and sometimes small ones.

Wednesday, October 16, 2013

Summer Adventures

In the calm waves of Ian’s success, I have neglected to update his BLOG. Somehow, I have less time. Now I know that sounds pretty silly, that I somehow thought I would have more time with my a healthy toddler..... but I had always thought I would have more time to dedicate to these types of things when I was worried about a sick child. The truth is, I’m too busy letting him do the things he deserves to do, and that more than makes up for the little time I had before. Our summer was fairly low key, but the fall has been slammed, week after week, with outings and trips. Let’s wrap up the summer first...


Ian had a weekend filled with lots of painting fun. We worked on using them as a sensory activity. He was not thrilled with the finger painting, but we were able to get a few good minutes. His favorite part was dipping the brush in each of the four colors before painting.

And speaking of sensory fun... Ian had really been enjoying popsicles lately. While he has yet to finish one on his own, he enjoys sharing them with daddy. Working on the cold temperature has actually helped him with other foods. He will not eat some of his breakfast fruit purees cold, and even likes them that way at times. He very daintily tastes the popsicles, so the juice is usually everywhere..... but that even brings another sensory therapy into play..... tactile. He is still very icked out by the whole concept of ‘sticky.’



Later on in the month, Ian was able to spend a few great hours at a local park while we were visiting my hometown. He often plays on the ‘age-appropriate’ toys/lot, but we all know he would rather go climb with all the big boys. This time, the ‘bog-boy’ equipment happen to be empty, so we took a stroll over for him to climb... his favorite! He had such a great time running and jumping from piece to piece. It felt so good to see him having such a great time. THIS is what summer days for a toddler should be.

There was a high school baseball field behind the ‘big-boy’ lot. The park is actually on the grounds of my old high school. He and Tommy walked over and began playing on the field. Tommy had Ian hitting balls with his pretend bat. Once Ian learned that he got to run after “hitting” the ball, he picked up pretty quickly. He wanted to stop at each base and celebrate! He even had some fun standing up on the pitcher’s mound. I could see the little-league-baseball-coach gears turning in his head.


As August came to an end, we made an apple picking adventure. Since the fall was going to be so full, we were left with an August day. Thankfully, the apples were awesome! Ian had a wonderful time picking them from the trees. We even caught him having a few snacks. It was a pretty amazing thing to see him biting into an apple in the middle of an orchard. He didn’t want much to do with the delicious apple crisp and apple cake we made, but enjoyed it more directly from the source!


A local beach has a wine festival every year. Tom’s parents are members of an association that volunteers at the festival. For the second year in a row, we have been able to go as a long weekend family getaway. Since it is late September, and we are in Virginia, we certainly were not swimming in the ocean, or even lying out on the beach. Ian was initially excited about seeing the water. He did like the sand and wanted to walk around in his bare feet (another sensory (hurdle I never thought we would clear.) Once he saw, heard, and felt the cold water, it was all over. Not only did he want nothing to do with the water, but anyone who was down close to water really upset him. Thankfully, we were able to fill the weekend with miniature golf, french fries, walks on the boardwalk, and games... all of which he enjoyed.


On the way home from the beach, we stopped to walk around our old college campus at Salisbury University... or Salisbury State as we knew it. So much has changed and it was like being in another school. But, parts of it still felt very homey, and it was sweet to be back with Tom in the place where we met and became so close. The large administrative building in the front is lined with gorgeous white columns. Ian looked so small sitting on the front stairs of such an overwhelming building. It was pretty neat to see him running around our old campus.

As our summer came to end, I felt like our family was finally breathing in what felt like a huge breath of fresh air. It was refreshing, calming, and hopeful. Ian was stable all summer and we were loving every minute of it!


Ian celebrated his third birthday right after labor day. It is overwhelming to think of the journey he’s had. When I look back, it seems like a long, winding road, with lots of detours, obstacles, and bind-curves. This year, Ian was old enough to know and understand that it was his birthday, and get excited about it. We had a few family parties for him, and a small quaint singing on the day of his birthday at home.

Birthdays are a bit different for preemie moms. They are usually filled with lots of tears, trips down memory lane, and reflections of the years past. While this is true for any parent... the minds of preemie moms (and the parents of other sick children) are usually filled with ventilators, surgeries, IVs, and hospitals. This year, we had A LOT to celebrate! Ian has made enormous progress over the last year and has been thriving since May. He has gained almost 10 pounds in the last year and grown 5 inches..... nothing short of a miracle! I can tell he is feeling better than ever!

This year was a bit special. In the preemie world, doctors drop off the “corrected age” somewhere between two and three. Corrected age is how the medical community adjusts your child’s early birth to the “should have been born ________.” The corrected age is the age from the child’s due-date. In Ian’s case, they always subtract 11 weeks from his age. For Ian’s doctors, the cutoff age was two for weight-age-adjustments, and this year (three) for height-age-adjustments. This year, Ian is no longer “corrected” for anything. For a preemie mom, it’s like your child’s first graduation!

Ian, Mommy and Daddy are so proud of you!!!

Ian actually did eat a bite of his Fig Newton "cake"

Hugs for best friend Riley XOXO

Sillys with Grandpa


Cruising with my new bubble mower

Saturday, August 10, 2013

The basic thoughts for G tubes

Lots of people don't know what tips to follow for G tubes.  Here are a few that we use in our home.  This list is by far incomplete..... that would that a novel :)  Always ask if you have questions.  I'm happy to help!

Ian's G tube saved his life, and was far better than an NG tube. We actually told them no when they wanted to send home with an NG. We wanted the G tube. Ian was 2 pounds in the NICU pulling them out hand over fist. He was one year old when he got the G tube. It was placed for severe reflux, vomiting, and failure to thrive.

ONE more before...... and ONE month after G tube surgery

Here are some things to think about once the G tube is in.....


The first couple weeks it was very sore... because it was healing. That was critical time because tissue can rub, causing what they call granulation tissue. Granulation tissue bleeds rather easily, and look like a blister, even though it isn’t. It is actually common among kids with G tube irritations. It comes from friction. Ian had a hard time with it early, but there are meds that can help. Also, protection helps..... I can mention those things later :)

This link at talks about troubleshooting, and granulation tissue is included:


We made sure the site was freely moving and well protected. Sounds like it contradicts itself, but not really. We clean it twice a day, every day..... works wonders! Don’t skip it. I’ll walk you through what we do. We used to do other routines, but they didn’t work very well. Then our surgeon told us this routine, and it only took a week for improvement, and it’s been almost perfect ever since (started 9 months ago.) it keeps the area clean and very dry..... dry is important! Moisture creates friction.

STEP ONE- clean with Johnson Baby Shampoo and a q-tip

STEP TWO- use a wet q-tip to wet the area and was out a lot of the shampoo

STEP THREE- use a dry q-tip to dry the area pretty well

STEP FOUR- use a corn starch powder... gently tap some on the G tube site. I like to use the CVS gold bond generic corn starch powder

STEP FIVE- rub the powder round the site and blow the extra off..... this keeps it very dry!

STEP SIX- rub maximum strength Desitin cream (purple tube/tub) all around the site

STEP SEVEN- use split IV gauze or a button cover around the site.... secure gauze with tape.

**It sounds like a lot, but it gets really fast :)


I mentioned the split IV gauze and button covers. I prefer the gauze because it is thinner. The split IV gauze comes in packs of two. We use one coming from each direction. They overlap that way. The button covers come in lots of shapes, colors, and sizes. My BLOG page has a lot of supply links.

In addition to the covers, they do make belts to protect the tubes (AKA buttons... if it IS a button. Pegs are a bit different....... a long tube coming out of the body). We like the BENIK belt. it’s velcro, neoprene, stays in place, and totally sizable. Therapist, OT/PTs, can get them for you. They kept Ian from rubbing his button while he was playing, jumping, running. Not perfect, but awesome.

Some people like using the onsies overnight and during the day for protection, and to keep little hands away. We couldn’t use them because Ian needed continuous feedings from a pump, day and night. Now, some people would still do both, but we couldn’t make it work for us.  More on that in the FEEDING section below.


Ian never lost his tube for the first year. Now, he has had 4 come out since November. Mostly because he is more active and they get rubbed. It’s freaking scary when they come out, but don’t totally freak..... you have some time. Often times, you have about 15 minutes before stuff starts happening. If it comes out before it is healed, go to the ER without question. Later on, as they “slip out,” you can make a judgement call.

We always keep a back-up-button. Nice insurance companies will cover for a back-up. That way, when an emergency arises, you have an answer. Remember to replace the back-up-button after you use it :) 

I have a video on how we change Ian's button.  He's not too happy because he is very tired...... but the job was done.....


Venting allows air to escape through the button. Ian had a reflux fundoplication surgery with his G tube, so he had trouble burping. When they cannot release air through burping, venting allows the pressure release. There are a few ways to do this, but the easiest is to hook up a locked empty extension, with a 60 mL syringe on the end and then open the lock. You will hear the air escape. I have a YouTube video on how to use just a plain BD sterile syringe too. It is the same video as the cleaning video.


Depending on how you are going to feed, there are different things to try/avoid. If you want to, let me know and I can give you some pointers.  We used backpacks during the day to hold the pump and bag.  We personally like the ones from Feeding Essentials the best.  They worked very well for Ian.

At night, we used the belts to secure the tubing that wrapped around him and then down through a leg-warmer on his leg. Then it attached to the pump. I can always give you more ideas if you’ll be doing continuous feedings..... let me know. 

We attach the extension to Ian, the loop it through his belt to hold it in place.
We then run the tubing behind him, and down and out his pant leg.
This way, he can roll around without getting wrapped up.

Then we attach the tubing for the feeding bag and clamp it in place to keep from "pull-outs"

I remember thinking it was this very frail thing and I was afraid to touch it..... now we can do everything in the dark. It will become second nature. Just keep doing it. Let me know if you have other questions or concerns. I’m happy to help. :)

*** I always need to mention that I am NOT a doctor. I am the mommy of a tubie, with quite a bit of experience with research, and as a medical professional in the field of dental hygiene, I have had lots of medical classes..... but I am NOT a doctor. Always check with them first, even if they don’t agree with your decisions. ***

Sunday, August 4, 2013

A Blended Diet 'How-To'

I have been blending diets off and on for almost two years now. Ian was 100% G-tube fed for about 18 months. He needed to have special formula in order to keep his blood sugar stable. However, he is now using a BD, and fortunately, taking it by mouth. What we do it blend all his meals in a Vitamix and then spoon the purees by mouth. You could do the same thing we do and “tube” the meals.... with a little tweaking. Given the right consistency, you could do the same thing via tube.

..... This is what works for us.... piece together what works for your family.  This is *by no means* a set in stone process!!



I believe that working gradually into the BD is the best way. Fruits and veggies are a good place to begin. Sweet potatoes, carrots, pears, peaches, apples, and most other fruits (except bananas which can be sticky and tricky) are a good starting point. I have found following the calories to be a good guideline of what to feed Ian. I believe breast milk on average is about 21-25 calories per ounce if you are including that in your blends. Think of it as 0.75 or so calories per mL. That's how I used to figure it. The purees in the baby food can be tough. You need to follow the guidelines on the containers. It is also important to find out the caloric needs of your child’s weight and age.


I can tell you this though..... while we were learning about BD at Ian's day-patient eight week feeding therapy program, jarred food is largely water and while the calories are there, the nutritional content is much lower. Although, when needed, it is certainly a good source of nutrition. If you have access to a good blender, blending your own foods will provide better availability in nutrients, and much more options.

When it comes to fruits and veggies, we blend apples, pears, peaches, apricots, mangos, pineapple. sugar snap peas, green beans, carrots, sweet potatoes, mixed veggies of all kinds, and creamed spinach the most. Corn is tough because it is starchy, and berries are tough because of the seeds. It is fun to experiment once you get some basic foods down.

For proteins, entrees, we use frozen meals. That way we know the nutritional content and know he is getting enough protein. We typically take two lean cuisine meals, or one hungry man meal, and throw it into the blender. It gets tough with the consistency, so we usually use broth or bullion to keep it smooth. You can use gravy also........ but I’ll get to that later on with ‘boosting.’ :) Soups also make good blends, and tend to be thinner. I know frozen meals are a little controversial, but they work well for us. We cannot always blend up our meals for Ian. Stomach emptying, food content, and so forth get in the way sometimes. The two lean cuisines, or one hungry man meal, will make *several* meals worth of blend!

Cooked, canned, and steamed foods work *way* better than raw foods. For veggies, we use canned carrots and sweet potatoes. I use GIANT brand steamer bags (not sure which grocery stores you have, but we use the store brand microwave steam veggie bags) for the peas, green beans, mixed veggies, and creamed spinach. Canned veggies tend to make me nauseated, yuckie. We do use canned peaches, pears, apricots, applesauce, and mangos. Fresh produce is hard to blend...... at least for us.

We even blend him breakfast entrees. While we don’t use frozen meals, we do use frozen waffles and pancakes, and even breakfast sandwiches. They will blend best with a fruit in them. When we blend pancakes, I usually add applesauce to them the make it smooth. 

What you can also do is blend whatever you are having for dinner. After you introduce foods slowly and individually, you can add them together. Say you are having meatloaf with mashed potatoes and green beans for dinner one night (mmmmmm, now I’m hungry too!) You can put all three of those things in the blender and blend them for her. You could thin it out with juices from meats, broths, or even gravy. Remember to keep the portions correct....... about half the meals veggies or so, then a little bit more protein than starch.


We keep the entrees in the fridge for one week. They do tend to be thicker than the fruits and veggies. We freeze the fruits and veggies. They are usually gone in a month. I freeze them in ice cube trays, which are about 1-1.5 ounces each..... then I bag them by food. You could then mix them anyway you wanted. It’s a little different, but that is the way we do it. Even though Ian is taking them by mouth...... there is no reason you couldn’t do the same thing, blend it the same, prepare it the same, and then push it through a G tube instead of putting it into his/her mouth.

I also save all the juice I don’t need for use in future blends. Having the juices from the canned foods helps with texture, and also gives you the calories from the juice. Soaking in the juice helps keep things smooth. For example, peaches NEVER need any of the juice in the can (they are so juicy all on their own). So, I drain all that juice and save it. I mix all the fruit juices together and all the veggie juices together that I don’t need (which is very very little because veggies are much starchier). I keep them in the fridge for 2-3 week in a bottle and use them for other blends. For example....... If I have a pancake entree in the fridge and it needs thinning before I feed it to him, I add some fruit juice and then mix it up in his bowl. It doesn’t really add calories, and decreases the ratio some, but keeps it smooth. Milk also works very well for this (whole milk has great calories!)


When we feed Ian, we mix about 50/50 fruit or veggie with entree. That way, he is getting a nutritious meal. He uses Nutren Jr formula for dairy. You could always add your breast milk as the dairy.

Another thing worth mentioning (at least I feel it is for us) is ‘boosting.’ I had another BLOG entry that talked about boosting. I’ll send you the link also. But, boosting is adding calories on top of the existing calories. It is a great way to get more bang for your buck if volume is an issue..... like us. You have to make sure the blend isn’t too rich though (thick chocolate flourless waffle dessert with chocolate syrup...... mmmmm, hungry again!) We do what is called 3/4 boosting. There is also 1/2 strength boosting. The ratios are in my other post. Let me know if you have questions about that since it can be confusing.

‘Boosters’ are high calorie foods that can be added to your blends. We use, syrup, jams, jellies, butters, oils, gravies, etc. You can even use powdered formula or formula boosters like Duocal. If stomach emptying is a problem, stay away from large fatty ones, like oils and butters which take a longer time to empty. We find the jams, jellies, preserves work well for the fruits, gravies and syrups for the entrees, and then we use gravy or powdered supplement (Duocal for us) with the veggies. Salad dressings are another good booster, but add LOTS of flavor. We found the amount of salad dressing booster that is added for higher calories, overpowered the veggie flavor hugely! 

Oh, and remember, blends are typically 23 calories per ounce, without any boosting. The 3/4 boosting gets you up to 39 calories per ounce.


The blends can be a bit tough to “tube.” But, if it’s done right, it isn’t so bad. It is incredibly tough to get one thin and smooth enough to go through a pump with a bag. Also, leaving them out of the fridge for a long time can ruin them. It is best used with a 60mL syringe and either a right angle Y port extension, or better yet, a thick lumen bolus extension. If you use the Y port right angle extension, you can use either a slip tip or catheter tip 60mL syringe. Not sure how familiar all blend-mommies are with the difference...... but it’s the thin short tip syringe, or the fat tip syringe. The Y port extensions have both opening options. Gravity feeds are also tough with BD since the blends tend to be much thicker then formula or water.

Bolus extension and Y port extension

Slip tip syringe and catheter tip syringe

I found the syringe-push method seems to be most efficient, but also needs the most caution. You can easily push too much too fast. You can always take mini breaks, or feel her belly to see if she is getting full. If stomach emptying is a problem, giving lots of small meals throughout the day will help a lot.


Most blended diets require extra water boluses.  Purees carry a 50% free water load.  Most formulas are 85% free water.  Follow the guidelines for the recommended amount of free fluid your child needs every day.  Because of Ian's lower GI issues and his visceral hyperalgesia, he needs a whopping 45 ounces worth of "free fluid."  Free fluid is the available amount to the body.  Most children on blended diets, in my experience, need a few ounces of plain water pushed through the tube every day, or even more.


One final thing...... about a blender. Certainly, use what is available to you. Larger blenders are best for making larger blends... duh. If you try and do small blends in a large blender, it simply flies all over the place! LOL! Personally, I found a Magic Bullet to be a complete waste. The blades were not sharp enough, and it didn’t hold up long enough to be using every day. The Oster and Hamilton Beach ones are pretty good, and reasonably priced. 

Vitamix blenders and Blendtec blenders are awesome! If you have the means..... please..... invest! They have dry and wet containers with great blades designed for each. Then you can mix them together in the wet container. We own a Vitamix. I love that one for many reasons. But, other than the reasons listed above, it has steam vents so I can blend piping hot steamy foods without needing to cool them first. Blending very hot foods without vents creates pressure, risking a pressure release and ‘exploding’ when you open the pitcher (been there, done that, cleaned the place up!) They also have a dial for power, allowing all ranges of speed. The HIGH setting will even heat foods up within 30 seconds, allowing you to blend smoother, and even heat up the blend before feeding it to her (if you would like to avoid microwaving her food). I personally feel that Vitamix would blend-up my iphone if I put it in there!! 

The thing I like best about Vitamix blenders is the nutrient availability. The blender breaks down the cell walls of nutrients, allowing them to be more readily available to the body. Sadly, a regular blender cannot do that.......... but, by all means, a non-Vitamix blender for BD is certainly better than jarred food or formula (other than breast milk).


I have given you a HUMONGOUS amount of information! Don’t try it all at once. I found having the information available gave me guidelines of what to do when, instead of accomplishing one step, and then going........ now what??? I would start with introducing one food at a time..... then start piecing meals together based on what she has had so far. Certainly keep the breast milk in for dairy and the best nutrition possible if that is on your radar.

Once again, lots of information, and it certainly won’t all pertain to you..... but pick and choose. I believe in giving people options. I hate being TOLD what to do for my son. Gathering all the information and then making the best decision for our family has always been our philosophy. Just believe in what you are doing and know that you are not alone. BD doesn’t have to be *fancy.* You always have time to get fancy later! ;)

Thursday, August 1, 2013

Ian's Favorite Books

Ian has some great favorite books right now. I thought I would share!

My sister and I loved this one as kids!

This was another one of our favorites..... and oldie but a goodie

A present from MiMi for lessons well learned...

Another MiMi present...... Ian almost knows this one by heart

Also a gift from MiMi.... adorable!  She gifts the best kiddie books!

Friday, July 26, 2013


Ian uses an awesome squeeze bottle for his meals/feeding therapy. It is a great way for us to deliver liquids to him. It forces fluid up and out the straw, without sucking. Ian has been using this bottle for six months now and it is working very well. He is not really able to use it on his own. It has quite the learning curve for little ones with “squeeze-happy” hands. It even takes a couple times for parents to get use to the feel. The plastic gets softer the more you use it and wash it.

People have been asking me how to make them so I thought I would give a quick tutorial. They are easy to make at home with a few simple supplies from local stores.

Supplies needed:

1- hair color bottle from your local Sally Beauty supply, or similar store

1- clear plastic PVC tubing from your local hardware store 1/4 inch thick

PVC Tubing

1- pair of scissors

You will need to start by cutting a 6.5 (or longer!) inch piece of tubing. This gives enough room for the tube to curl some inside the bottle to reach the bottom/side, and also enough at the top to act as a straw. You can always shorten the straw later. Make sure to cut one end blunt/flat and the other end on a diagonal so it reaches the bottom better.

You also want to cut the tip off of the coloring bottle. Start by cutting higher up, and testing if the tubing fits. Continue to cut lower until you can get the straw in with a *snug* fit. It should not move freely, but shouldn’t be pinched to insert.

Once the tubing fits snuggly into the top, screw the cap on and see how it fits inside the bottle. The straw should curve into the “corner” of the bottle.