Eat Happy!

Eat Happy!


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Sunday, September 23, 2012

Daddy's Tubbie-Helper

Helping daddy fill the tub.

YouTube Video

- Posted using BlogPress from my iPhone

Ian-Monkey having fun at Gymboree

Ian LOVES to climb!!

YouTube Video

- Posted using BlogPress from my iPhone


I have a very brief update to throw in about Ian and his communication skills. We have been working a lot with Ian on sign language skills and pronunciation of sounds. Yesterday he started saying bubble. Other than the occasional Elmo, or his half-a-word for duck and dog, this is one of his first words. He was saying it again today at Gymboree. Most parents experience this earlier than we are, but it is very strange to start hearing your child telling you things, as opposed to the other way around.

We have also been working quite a bit with sign language. Ian signs “eat,” “drink,” “more,” “please,” “thank you.” We are working on “hurt.” He seems to pick up on them pretty quickly. He sometimes has trouble doing them without us asking if he needs something. Whenever we mention it or ask, he always does the signs.

We are very proud of him. He has an appointment with the school system in our county tomorrow about his speech and physical therapy delays. We will also being working with an awesome speech therapist at our clinic in November. With Ian attending preschool two days a week, going to Gymboree twice a week, and also taking swimming lessons, he is getting a lot of exposure to interactions he needs to learn.

Video Sample Retching Episodes for Ian

Here are two samples of a retching episode.  The first was a moderate one and I only caught about half of it.  The second is a long (5 minute) retching episode that happened early one morning....... hence the dark video.  Five minutes gives you a feel for how long they can last.  I cannot imagine trying to vomit so hard for five minutes continuously.  It is horrific.  Ian has had 42 of these since the 55 days after his last surgery.

We are always looking to manage these the best we can with foods, recipes, routines, medications, and TLC.  Unfortunately, since some of it is triggered by simply feeding through the G-tube, there isn't much else we can do except continue to get him to eat orally.  When you eat, the mind, stomach, and GI tract "prepare" with enzymes, hormones, and other bodily functions.  Feeding directly into the stomach, of course, does not do this........ and hence creates an unnatural scenario.

Ian's Favorite Things

Ian has been crazy about Sesame Street for quite a while now. He seems to enjoy watching the “Play with Me, Sesame” shows best. They are only 30 minutes and feature Bert, Ernie, Prairie Dawn, and Grover. Ian loves Bert and Ernie.

Play With Me Sesame

Ian has always loved books and reading. Right now he has a long time favorite, Sandra Boynton’s Snuggle Puppy. He also currently enjoys reading Duck and Goose, It’s Time For Christmas. I think he likes the animals and the textured, glittery pages.


Ian also loves the Gymbo puppet at Gymboree. When we sing his song and he comes out to play, Ian always goes looking for where he is hiding and loves when he comes out and gives kisses. Ian is such an attention hog and always wants to be next in line to get Gymbo kisses.


Ian’s Sesame Clubhouse and Building Characters from Sesame Place are some of his favorite toys right now. They happen to be birthday presents also. He enjoys his alphabet floor puzzles too.

Ian has enjoyed playing his ipad at doctors’ offices and while being in the hospital. He likes the letter and matching games best. he is learning coors, shapes, letters, and numbers. He has a few favorite apps that he plays. the scary part is he is able to unlock the screen, scroll to find his app he wants, and how to get through the prompts to pick his game. He cannot even say the game, but he knows what he wants!

Balloon School ipad app

Sea Matching ipad app

As always, Ian loves his spicy and crunchy foods when he does choose to eat. He likes the Goldfish crackers, MultiGrain Cheerios, and Spicy Nacho Doritos.

Ian continues to enjoy playing with his syringes and helping with his meds. Another of his favorite things is to run and grab things off the printer for me. As soon as he hears the printer, he stops, smiles, runs over, waits for the papers, and then runs them back over. It is adorable and makes me want to print things just to make him smile.

Saturday, September 22, 2012

Trying to Compete with Compleat

Let’s start with the simple things first. Well, anyone who has spent a week in our lives knows that there is no such thing. After purchasing our “excellent” HEPA air purifier, we begin to find numerous negative references. Now I know that it seems as though everything these days claims to “cure ___________” while at the same time pertains a warning stating “harmful effects for ____________.” The best we could do was intelligently make an informed decision about what was best for Ian.

The warning we were continually fronting was about the ionization. Ionizers produce a level of ozone gas while they produce beneficial effects. It is the ions and the ozone that help to purify the air. Well, apparently some believe this particular type of ozone gas is harmful. I could go around and around with this argument all night; but, the bottom line is the box does have warnings against using the ionization for those suffering from any breathing related difficulty....... DING DING DING!

While we had pretty much decided we weren’t willing to take the risk of the ionization, we had already scheduled a meeting with a local company about home filtration..... anything better than what we have now. There may be some great advantages to the ozone and ions, but it isn’t worth the chance to us. We were more interested in replacing the filters we have in the home now with HEPA quality filters. Come to find out, the filters that were provided for us by the home builders only filter 3-5% of the particles from the air...... Go Figure!! Actually, they are fiberglass filters, not “plastic” as advertised. Sold in California, they require a Surgeon’s General warning on them. Clearly, this wasn’t gonna cut it for Ian.

While unable to complete the whole laundry list the HVAC man provided, we did find one very useful place to start. We will be replacing our “hazardous” filters with ones that provide much higher filtration. We are still on the search for the best one for our needs. We are also impatiently awaiting the first frost when the ragweed can keel over and die.... sorry ragweed!

Ragweed aside, Ian’s doctors have decided to trade in the current formula for chicken, cranberry juice, veggies, and fruits. Thankfully, there is a formula that contains all of these. It is essentially a blenderized diet in a can. Now, this is in no way implying that using this formula is ‘like’ eating blenderized diet (BD), because it isn’t. I have many friends using a BD and it is a wonderful philosophy. As of right now, Ian needs a little more monitoring of his particular nutrients and quantities to be on a free BD. The next best thing is his new Nestle Compleat. This gives Ian the chance to continually eat real food that is supplemented with all the goodies he needs.

The previous trials were leading to lots of dead ends. When they backed down Ian’s corn starch, (which was being used to keep his blood sugar buffered and stable) he had trouble keeping his sugar up and had an increase in loose bowel movements because he was “dumping” again. Only trouble with that is, the corn starch was backed down because of GI intolerance to the higher levels he was previously on. It was very cyclical and was going nowhere. Whatever tweaking we tried, Ian wasn’t improving. Tom and I have been brainstorming for the last handful of months about the food he was eating. At first, it was doing wonderful things for him. As time went on, it seemed harder to keep his system happy. Everyone is praying that the new Compleat diet will help lift him in the areas he needs, and maintain the levels he needs.

We began the new diet yesterday. I must add that it is such a breeze to make. Even easier than lots of kids’ meals. Now, now, I know that sounds strange, but let me start with our previous adventure.

1) The older formula required us to mix 3 cans of formula, with 370 mLs or water, 13 mLs of canning liquid pectin, and 67 mLs of Microlipid Rx (fat in a bottle-gross!).
2) Then, each bottle (4) was given 120 mLs (one bottle for each meal). Ian’s overnight meal was in a large bottle.
3) During the day, each of the 120 mL bottles received 1.5 tsp of corn starch just before eating. This needed to be shaken vigorously in order to mix completely.

Everything needed to be mixed in a large pitcher before dividing it up into meals. With the new diet it is much simpler.

1) Mix 4 cans of Compleat with 40 mLs of water.
2) Divide into 4 bottles and 1 overnight meal.......... THE END!

Thankfully we have eliminated all the extra steps. Tom and I almost feel as though we are “neglecting” to do what is needed. It has been a routine for so long that it seems ‘lacking’ to not continue.

The first 48 hours of a new diet are the most indicative of what is coming down the pike. CHOP had us monitor Ian’s blood glucose very closely. We have readings for 30, 60, 90, and 120 minutes post meal, for all 4 meals during the day, and the overnight. That’s a lot of d-sticks (dextrose sticks) for glucose. Ian is such a strong and happy boy. He sits and puts his foot out the minute we come close with the monitor. Today he even came over, sat down, and started taking his sock off. If I ask him which foot, he picks one. If I ask him heel or toe, he points to one. I can’t decide if it makes me proud of him, or sad for him. I think it is a little of both. Children should never have to do that, and parents should never have to ask themselves those questions. Unfortunately, millions do everyday for one medical reason or another.

Ian’s blood sugars have been pretty darn good so far. We completed the 48 hours and will be submitting his report card soon. We had a few dips in the numbers, but Ian seemed to be strong and we hope the doctors at CHOP will feel good about keeping him on the new diet.

However, Ian’s retching has not ceased. I believe until we can get him to eat by mouth, and not artificially through a tube, the retching will continue. In the meantime, trying to minimize it with routines, recipes, drugs, and procedures will always be a work in progress.

Thank you again for all of the love and support. I am told that people all over the world are praying for Ian at home, in their own groups, and with friends. I’ve also been told that others are bringing his pictures to groups. Most of these people have never met in and only follow his life by word of mouth, BLOG, or family and friends....... even friends of friends. Some are bringing healing light and hope, while others offer hugs and kisses. Whomever, whatever, and wherever, we are grateful to all of you.

I like to watch Ian stack his toy cups. It seems like each time he builds, the bottom cup is never big enough to support the higher cups. As he builds, he often realizes his instability. He then promptly removes them until he has a place to put a larger, stronger cup. Finally, he has his tall pyramid of cups, strong and sound. I feel as though each time our stability falters, and the cups tumble, a larger, stronger cup slides in underneath of us to help bring us back up. The feeling is indescribable. Each time the cups falls, there is always another bigger, stronger cup not far away. Thank you all for being the bigger, stronger cups when we need them the most.
Ian building with his cups on his first birthday

Tuesday, September 18, 2012

I Love Pollen

After the last few days, an update is due for Ian. It has been a very busy last few days. Once we returned from CHOP on Thursday, Ian began his plan to help treat the upper airway and esophageal troubles. We immediately started the new recipe and began making the dietary changes. Ian has an appointment in the beginning of October for the tonsil consultation. Moving along those lines. I’m not sure the Rx did anything for Ian’s tongue, but maybe through placebo, it did something special!

We also invested in a HEPA air purifier. When I say invest, I mean invest! The thing even came with a protection plan! After researching different brands and quality levels. The highest allergen coverage, for a medium room like his bedroom, that was considered quiet, and came with HEPA filtration was almost $250. This purifier is going to be traveling with us quite a bit for overnight visits that are more than a single night. I did notice that it made the room smell funny. Tom and I thought that was strange. Then it occurred to me that “Ian’s air” didn’t smell, the rest of the air smelled. Ian’s room smells very fresh and crispy-clean. Apparently, it’s our air that’s smelly! We are looking into a home HEPA filtration system, but........ one step at a time.

Somehow or another, despite the recipe changes to help decrease Ian’s bowel troubles, we ended up in the opposite corner. We had three days of horrible diarrhea, yellow diarrhea. Now this may sound like TMI to most people, but coming from a GI standpoint, where half or more of your child’s life centers around his gut, yellow diarrhea is a big deal. The doctors at CHOP reassured us that it is most likely attributed to the dietary change, in the “switch-over.” After giving it a few days, it began to subside and we seem to be on the mend from that.

During this time, Ian ended up doing 24 hours of Pedialyte as well. Between the 24 hours of no food, and the 3 days of endless diarrhea, Ian managed to lose 5 ounces. This is no surprise, but does undo all the progress in weight since the surgery. Another trouble to follow was blood glucose. When diarrhea is significant, intestines do not absorb nutrients as they should... (partially because food is moving too quickly through the intestines and food needs time there to be “processed” properly.) Since blood glucose levels were not easily maintained, hypoglycemia began to rear it’s ugly head again.

Ian’s sugars were dropping into the 40s for a few days. Now 40 is not typically dangerous to the brain in terms of seizures or cell death, but an ongoing level of 40 isn’t going to help you any either. Ian experiences a lot of irritability, lethargy, pale color, and “glazed” looks. Thanks to Similac’s Glucose 10% water, Ian was brought up quickly into the glucose amongst the healthy. Even today we are still seeing glucose levels in the 50s. We have been reassured again that levels in the 50s are not troublesome until their are symptoms. This morning, Ian was running and laughing at 53. Sometimes he amazes me. I think I throw the towel in somewhere are 65 ;)

Last night we dove into a new experience..... wet, violent, gasping, wheezing, choking coughing fits. These are pretty scary. Ian had his first one at midnight. The coughing fit lasted about 3 minutes so. During that time, Ian turned all sorts of colors and we could hear the “stuff” moving around in his esophagus and upper airways. What that “stuff” was, we didn’t know yet. We did give Ian a few puffs of his Albuterol to help him. It seemed to allow for easier breathing, but of course did nothing for the root of the problem.

After he settled down, he slept very well until his overnight meal was finished. As we unhooked him from his meal, he awoke and had another coughing fit. Once again, the coughing was wet and thick, and seemed to have Ian choking and gasping between coughs for breath. There were no breaks in between coughs, gasps, and wheezes for either episode. It was continual. Again, the Albuterol gave him some relief.

As we had previously been concerned about viral symptoms prior to our CHOP visit last Thursday, this got the gears in my head turning. (Hey, you knew it would..... would you expect anything else from me?) While I didn’t want to diagnose anything, I wanted to be prepared for illnesses and symptoms before the appointment at the pediatrician at 10:30. I have found that it is almost always imperative that we do our research before going to hear what any medical professional has to say.... so we can listen, counter, and ask appropriately. Ian’s symptoms tended to fall into the categories of Whooping Cough and Pneumonia. Thankfully, Ian has been vaccinated for both of these (unless diagnosed as viral pneumonia).

After an examination showing perfectly clear lungs (go figure) and no ear, nose, or throat troubles, we began to make connections with Ian’s other troubles. And around and around we go again. The conclusion was that these sounded pretty much like Ian’s regular episodes, only with actual “stuff” in his throat..... stuff that he was actually getting up into the esophagus. Although unable, or unwilling, to vomit or spit out the “stuff,” it was still caught somewhere between the stomach and the mouth. This caused Ian to struggle.

As the daytime came, the coughing fits stopped and he continued to run around like nothing ever happened. He continued to laugh and play while not sounding congested at all. The congestion only seems to come during sleep...... nap time and overnight. We were glad Ian didn’t have some type of serious viral or bacterial infection. It was nice to pull the “less dangerous” card for once.

We will looking into Rx Singulair for Ian to help with allergies, as well as breathing ease during the coughing fits. Hopefully, that will help us make some more progress. Working with allergies for a kid who can’t vomit up junk or blow his nose is incredibly frustrating. I can hear him moving it around, trying, but failing to get it where he needs it to go. 

CHOP Reflux Clinic Website

I spoke with the web and marketing chair at CHOP yesterday about Ian. The reflux clinic Dr. Blinman and Robin have created will now have it’s own webpage. This will give families a chance to learn about their philosophies. We are hoping that it will make it easier for families to find advice and seek care. This is going to be a huge step in getting the word out about what they do and how they can help children who usually do not respond to medical therapy for the treatment of GERD and associated diseases.

They have asked to feature Ian as a story on their site. I interviewed with the girl over the phone for about 90 minutes. it’s amazing how much you have to say about a story when you keep talking. The site aims to be up and running by the end of the year. Tom and I were excited to contribute to such a great cause.

We also had a chance to celebrate with family this weekend. Saturday was a cousin’s 2nd birthday party with lots of kids and fun. Sunday was a family reunion picnic with an awesome playground and nice weather to play. Ian had a lot of time outside this past weekend, which I am sure didn’t do much for the allergies. Once the medicine is in routine, we are trying to fee optimistic that it will make a big difference.

Friday, September 14, 2012

It's Off To School We Go

A few months ago, Tom and I decided it would be great to have Ian in a Preschool program where he could be exposed to other children his age who are talking and eating. Since there are so many programs, we first had to narrow it down by who would accept him. Because of Ian’s special medical needs, there are few who are certified in these types of needs. 

What we found very quickly was that none of the ones near us have these certifications. A little annoying, but then again, I wasn’t about to push sending my kid to a school who really didn’t want them there. The best places for Ian to attend ended up being church based programs. While these preschools function in a church under religious affiliation, they tend to be fairly neutral Christian based.

We happen to enjoy the opportunity to Ian learn about Christianity and participate in activities such as Christmas pageants and Easter egg hunts. The kids get to do lots of other fun things. Trips to pumpkin patches and fire departments are planned throughout the year. The school also hosts “Mother’s Day Tea” and “Donuts for Dad” each year.

Before heading to school, I took a few photographs of Ian and his book bag. I know, a book bag! Ian needs a bag for communication folders, projects, and lunch box. He is adorable with it on his back. Lots of times, he only wears it briefly since it is so big!

Sportin' My Sweet Back Pack

All Ready Mom!

The first day of school was lots of fun for Ian. He had a great time playing with the other children and enjoying the playground. Apparently the fact that I wasn’t there was no issue. Thankfully, it was not an overly emotional moment for me, other than being proud of him and feeling hopeful. He waves to all the kids when he leaves and the kids are always excited to wave back and say goodbye.

We are so glad Ian is with other kids and enjoying his time at school. He attends two days a week for five hours. They are very accepting of Ian’s medical issues. Thankfully, we are able to arrange Ian’s schedule so he doesn’t have to worry about food while he is there.

As I was dropping him off today, I took some new pictures of him walking into the school.

Shake It Up

As if oral 1) Oral Sensory Feeding Aversion, 2) Oral Dysphagia, 3) Vagus Nerve Hypersensitivity, 4) Gastroparesis, 5) Post-Prandial Hypoglycemia, 6) GERD, 7) Ketotic Hypoglycemia, and 8) failure to Thrive weren’t enough diagnoses already....... we now have to deal with seasonal allergies. Recently we ruled out another diagnosis of Visceral Hyperalgesia. One by one, layer by layer, we are getting further into the thick of what is exhibits. For those of you interested in Visceral Hyperalgesia, I have a summary below.

Yea, yea, I know..... none of those words make any sense to the average Joe, including myself a year ago. Thanks to my medical terminology class, I was able to piece it together, but it leaves many questions even after knowing what the terms mean. “Visceral” means pertaining to the organs in the chest and trunk of the body. This area is lots of nerves involved in both the “fight or flight” (sympathetic nervous system) and the “rest and digest” (parasympathetic nervous system.) The vagus nerve’s role in this viscera is “rest and digest.” Because of this role, the vagus nerve’s effect on the stomach is to help it stay calm and relaxed. The term “hyper” refers to something being higher or excessive than normal. “Algesia” means hyper or excessive pain.” When looked at together, it suggests that Visceral Hyperalgesia refers to excessive pain in the organ tissue. This is a much un-researched field. It is a diagnosis of exclusion because no test can bring reliable conclusions. By looking at contractions and nerve stimulation, the medical field can move in the direction of this diagnosis, but too many others produce the same clinical test results. Here are some good resources if you anticipate your child, or yourself, suffering from Visceral Hyperalgesia:
Why Does My Tummy Hurt So Much? 

Other helpful articles from the same site included:
Importance of Early Pain:
Crying, Irritability, or Pain?
Solutions for Retching:
Disorders that Mimic Reflux:
Fundo in Kids with Neuro Impairments:

Moving forward with Ian. Within the last 3 weeks, Ian has been presenting with significant increased retching and intolerance. Most of this occurs during the early am hours and with his first meal. We visited CHOP yesterday to get the scoop.

According to a physical examination and an overview of symptom details, Ian is now being treated for seasonal allergies. Early “toddler-hood” is a common time for these to occur. With Ian’s other issues going on, especially upper GI and respiratory troubles, this as no surprise. Recommendations were to begin a Rx allergy nasal spray to help clear the airways and decrease inflammation.

Another issue contributing to this scenario is enlarged tonsils. At the ENT follow-up after the ear tube placement, we were told Ian’s tonsil were incredibly large and needed to come out eventually. This are causing trouble swallowing, as well as an occasional “tickle” in his throat, triggering retching and gagging. We have an upcoming consultation in October to move forward with this.

Along the same lines, Ian’s tongue is coated with a white “film.” As a dental hygienist, I have been aware of it for quite some time. Thrush was not a concern of mine because it is not located on the cheeks and does not rub off when disrupted. Nonetheless, this film could be causing the same “tickle” in the throat because of it’s change in the thickness of the tongue. They gave Ian an anti-fungal systemic Rx to see if it would improve. 

Ian’s food was changed a bit to help with recent lower GI troubles. We add corn starch to Ian’s food because it helps buffer the glucose. As a long chain sugar, it takes longer to break down and prevents the food from dumping out of stomach too quickly, and all at once. However, corn starch can also cause lower GI distress. Ian’s corn starch has been cut in half to allow an improvement in lower GI functioning and minimize loose bowel movements. As a result, the longer chain lipids (fats) needed increasing to keep preventing the dumping.

Ian’s Gabapentin (Neurontin) was ceased for the time being. The diagnosis of Visceral Hyperalgesia is one that responds to treat rapidly and extremely well. Since Ian has not seen an improvement within a week of use, this condition is most likely non-existent for him. Another “medication” they removed was the Florastor prebiotic. A prebiotic helps healthy bacteria grow and flourish in the gut, while probiotics are beneficial bacteria that aid the gut in doing what it needs. Ian’s prebiotic Florastor, contains fructose. As a simple sugar, fructose does not help Ian’s blood glucose levels. By removing this, we are hoping to keep his system moving correctly, preventing loose bowels and nausea-retching.

With significant seasonal allergies, we will be using a HEPA filter in his bedroom. Since Ian already struggles with respiratory issues, as well and GI issues when lying flat, we hope to improve air quality by adding the HEPA.Washing his bedding in hot water will help us keep allergens to a minimum.

On a much more light and jovial note, Ian’s picture is going to be featured in the clinics media. When we were admitted at CHOP for the repair, Ian really enjoyed playing with the room telephone. He had fun with the cord..... I know, a CORD right? The clinic really liked the photo and ask us if we would be allow them to use it, as well as tell a brief summary of his experiences for their website. Ian is such a cutie, so graciously I obliged. 

"Hey girl.  Can I hit you back?"

As things continue to change and hopefully improve, I will continue to follow-up.

Sunday, September 2, 2012

Ian's Second Birthday Party 9.2.2012

Today we celebrated Ian’s second birthday. He will be TWO tomorrow, 9.3.2012.  It was wonderful to have such a big party after having a very intimate and small family party last year for his first birthday. In only 19 days, we will be celebrating Ian’s first “tubie-versary.” We had a lot of fun today and had a large group of family and Ian’s Godparents. Since we have such a large family, we ended up with about 30 people.

We bought Ian a Thomas the Train cake made entirely of cupcakes. Most of his decorations were Sesame Street, mainly Elmo....... no surprise there! He got lots of great toys and some warm new pants for the winter. Ian played with the cupcake a little and did lick it once, but that was about the end of the cake “eating.”

Thomas the Train Cupcake Cake

Getting ready to lick the cupcake

We also opened Ian’s presents from “Sesame Workshop.” A few months ago, we wrote a letter to Elmo and Kevin Clash about how Ian always carries his Elmo things with him in the hospital and when we travel, and that Elmo always makes him smile. Elmo has been his first “real” and full word after momma, and dadda. They sent a Rock’n’Roll Elmo with other instruments, stuffed animals, a video of Elmo wishing Ian a happy birthday, and a few others things. The personalized letter and Elmo-Kevin Clash autograph was really wonderful.

Reading with Grandpa

Right now, our dining room looks like an explosion of presents, mixed with party-ware. I am sure tomorrow, on Ian’s actual birthday that he will want to play with all his new toys. After a long day of splashing in puddles, playing with toys and puzzles, and running around in all the people...... we are all exhausted and I am sure we will sleep well tonight! I feel like Grover........

Yeah Grover......... I'm tired too!

** As I think of how wonderful Ian’s day was despite all the trouble he is currently having, I am always reminded of children not able to enjoy these types of special days as fully as they should be. One little boy in particular comes to mind. We continue to thank you for all the thoughts and prayers for Ian and remembrance of the children struggling to be healthy.

The UPs and DOWNs

Sesame Place and Retching

After the surgery, Ian was doing exceptional.... for about two and a half weeks. In what seemed out of nowhere, Ian’s retching began again. This was disheartening to say the least. After pushing through the week of surgery, we were hoping for some more serious relief. I guess our expectations were set beyond reality. Ironically enough, the retching began the afternoon we were on our way home from the CHOP follow-up appointment.

At first, it seemed as though the episodes were associated with food and trying to eat. It didn’t take long before it was happening with his tube meals. Ian’s problems are mostly associated with the end of meals and shortly afterwards. They are the same to us as they were before surgery. Thankfully, since the fundoplication has been repaired, there is no vomiting. Unfortunately, the retching is dangerous because over time, another hernia could occur. The surgery was certainly still a needed procedure, and a success.

This has been going on for about a week and a half now. After a week, I called CHOP. We put Ian back on the Benadryl a few days before I called. The clinic recommended we back down to Pedialyte and “ramp up.” For those of you unfamiliar with tubie “ramp ups,” it is a way of “rebooting” or “resetting” the GI system. Ian had nothing but Pedialyte through his tube for 24 hours. Then, at night, his meal was “ramped up” to 3/4 Pedialyte and 1/4 Formula mixture that he usually gets every day. Ian tolerated the 1/4 strength very well.

Since we were doing a “reboot,” we decided to take Ian off the Benadryl. When I asked if we should or not, they never gave me a definitive answer, so we did. Unfortunately, when we “ramped up” to 1/2 strength, the retching began again. The overnight and first 2 meals were no trouble, but then came the problems. After another call to CHOP, we decided to start again with 1/4 and use Benadryl this time. They kept insisting he might have allergies or an infection over the phone. Clearly, I know my child does NOT have an infection. I am not taking him 3 hours away for them to tell me that.

Friday evening and all day Saturday Ian had 1/4 strength formula only. He did wonderful. Last night we “ramped up” to 1/2 strength again. He was doing very well overnight and with his 9am meal this morning. This afternoon, while eating an oatmeal cookie, he had another episode. Thankfully it was because we tried to make him it, and not something he brought upon himself. We have restarted his feeding therapy and are trying to bring on food despite behavioral responses. Clearly, this was a behavioral response that brought on physical effects.

We are hoping that once we back away from the therapy for a few days, things will fall back into place. If Ian continues to have trouble with his 3pm and 6pm meals, we will need to call CHOP on Monday. We took about 4 huge steps forward with the surgery, but it seems as though now we have taken 2 steps backward. At least the net gain overall is positive. Hopefully “rebooting” Ian’s system will help him. Apparently, sometimes these kids get into a habit of doing it and their systems cannot stop. When I inquired about this, they simply explained that they don’t know why an that research has not found an answer to that yet. They simply know that it works for lots of kids and make recommendations sometimes without knowing why.

Since CHOP is the most advanced place in the country for this type of treatment and medical issue, sometimes we have to take huge leaps of faith. It gets harder and harder to do that as time, fear, and sadness continue to bash our efforts. Something might get us clearly through the problems one day, or it might not. Ian might do it all by himself, or, they could remain for life. Ian has slightly better than a 50/50 chance of growing out of it all. Knowing Ian, I am sure he can beat the odds someday.

Sesame Place

One week after Ian’s troubles started, we took a 2 day-cation to Sesame Place. We drove up to Pennsylvania one day and toured the park, then spent the night nearby, and returned the next day. Most of the rides were for 4 and 5 year olds, but Ian was able to enjoy a few.

We took a ride on the flying Elmos. Ian much enjoyed the “riding” Elmos instead. The high flying was not on the favorites list. When we traveled to the waterpark area, Ian was able to do more things. They had several large pools connected that he able to play in. Lots of sprinklers and toys kept it exciting for him. The water was very shallow in some areas and Ian was able to lie down and play.

Playing in the Waterpark

He enjoyed a fun show while we were there as well. They have a “taping” of Elmo’s World, all about dancing. We were lucky enough to have a seat in the second row. Elmo was very exuberant and excited. Ian was skeptical of this 7 foot Elmo. The looks on his face were priceless. He had some smiles and was intrigued by the idea. When Elmo came over at the end of the show and reached out to touch the kids hands, Ian most certainly did NOT extend his.

The characters were fun and excited, but not walking around like the do in Disney parks. I was hoping they would be wandering around and interacting with the kids. Ian was able to hang out with Big Bird and Elmo for a photo.

The park does have a cool parade twice a day. At 3pm, shortly after we arrived at the park and then again at 8:30pm. The night show is a light show. We were fortunate enough to be able to watch both parades. Ian did like the parades.

Bert and Ernie in the daytime Sesame parade

Enjoying the night time lights Sesame parade

Although the trip was far, we did have fun. I think it will be something Ian will enjoy a little more in the future.

******Hopefully, Ian will turn another corner soon and begin learning to enjoy food again. The retching is getting really old and there is definitely nothing that would be missed. Ian’s second birthday is next Sunday. We are hoping for a wonderful day of family and celebration....... and hopefully Ian eating a small bite of cake.