What goes up must come down

I'm going to be passing this one over to my mommy as I am told that I don't understand what the big deal is about all this eating/non eating and mostly non eating...

Ethan Eating Yogurt with Grandpa at the beginning of the Operation

You may recall from Ethan's previous post that the first week and a half of Operation Starvation Dehydration brought with it some seemingly positive results, meaning Ethan was eating more goldfish crackers and cheese.  He didn't try anything new and was still very cautious around food.  He did increase the quantities of his"go to" food items but only for a brief time.

Flash Forward to a week and a half ago... The downward spiral begins.

Ethan quickly started refusing virtually any food or liquids.  At first he was down to taking maybe a handful of snack foods over the day until it was: No minigo, No formula, No goldfish, No cheese, No veggie sticks, No Water.....  For nearly four days, he lived on only 6 oz of formula each morning and refused anything else the rest of the day.   By the end of the fourth day, I had decided, that was enough, I am done being a horrible mother to my buddy boo, and I tubed him 5 ounces of pediasure and have resolved myself to keep tubing him some extra calories. I should mention that through all this not eating/drinking for days, Ethan was still the happy, playful child as he always is. He just didn't seem to notice or be bothered by it.

One of the frustrations is that we went into this whole scheme without any support for Ethan or myself, there was just the hope that Ethan would feel hunger and become a normal child and eat.  Not only did I get to starve my child but he had no therapy to guide him through the process. It was like sending a blind person down the freeway led by a blind seeing eye dog to find a leprechaun.

With the situation having sky rocketed, and me tube feeding my child under the cover of darkness hoping he didn't awake to see what I was doing, I began to research another option.  I spent what few precious moments I could muster between syringe squeezes to look into intensive feeding clinics.  The existence of these programs are very few, and far away.

A very brief overview of the intensive feeding program.  The programs generally last 4-8 weeks, Monday through Friday, full therapy days.  Most of the programs involve a multidisciplinary approach including behavioral, sensory, and starvation techniques.  The programs are only available in the United States and Europe, in all that I found to date, there are no intensive available in Canada.  I haven't mustered up the courage to ask for quotations from the program providers after talking with a mother who attended an inpatient intensive feeding program at a cost of $250,000.  I want to keep the dream alive for a little longer.

Blasted Canadian heath insurance benefits.  Like really, what's a $500 limit for speech and OT therapy going to do towards a $250,000 bill.  When can we move to the states?

On top of it all, my husband has been working 7 days a week, leaving me at 7:30am and returning after 10:00pm to try and make $250,000... wait... before tax that's more like $400,000... See, I can be an accountant too!  The real reason for the long hours though, is Shawn is an accountant and really wants to keep his job and provide for us... since I have no job effective September. La La La, Leprechaun.

This brings us to 8:30am Feb 25th when I took Ethan into the clinic to "sit on the scale and see the numbers" which displayed 21 lbs 14 oz.  That's a decrease of a half a pound in a week and a half or 2% of his gross body weight (can you tell I'm missing my husband).

Ethan enjoying a fake picnic

So the new medical plan: 
We're going to make a slight course correction by making sure Ethan obtains minimum of 16 ounces of his formula per day either orally or via tube.  Tube feedings are only sanctioned during periods of unconsciousness, because he'll know.  The focus is still on increasing volumes and willingness to eat so it doesn't matter for now if he only eats the same things he's used to so long as he eats more of them.  I have been trying to do more therapies myself with him to make him more comfortable with the processes of eating.  Ethan and I now enjoy regular purple and pink picnic basketing where he gets to fake eat and fake drink which he loves. 







Lastly, please recognize that today is Rare Disease day!

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. - See more at: http://www.rarediseaseday.org/article/what-is-a-rare-disease#sthash.pnz2i3pU.dpuf

A rare disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

Operation Starvation-Dehydration is a go!

Hi All,

Well it's been a little over a month since I last brought you all up to speed so here goes.

First, let's talk about "Operation Starvation Dehydration".  At our first weigh-in of the new year, I was down to 21.67lb and the doctor was getting concerned that I wasn't growing.  In addition, I wasn't eating as much and being tube fed more than half my intake on most days.   Since we weren't making any progress in either improved weight or improved oral feeds, it was time for more drastic measures.  Doctor Rosner's last ditch orders to kick start my progression were "Stop feeding him..."  What?  What was that?  "... through the tube."  <<insert ominous music>>

Well, you read that right, we've been on operation starvation dehydration since Monday January 28th and so far here's a summary of the results:

It started out as expected, I didn't eat very much and drank almost nothing.  I slept a little more than usual but otherwise I was my normal self.  The next few days showed glimmers of progress, I started to eat some more solids, I was eating minigo yogurts again, I even drank my morning sippy without argument.  Overall I was still only taking about 10-12 oz of formula (half of what I should have). I was eating the same solid foods, but more volume.

By the end of the first week my mood had changed to grumpy as my tummy was growling and I didn't know how to stop it from feeling so painy. The plan was to meet with Dr. Rosner again on Thursday to check my weight, do some blood work and generally discuss how things were going.  Thursday Morning came and I was going to be ready for it. I held back my poop, and began the day with an 8oz sippy of formula!  As many of you know, I am accustomed to 6 oz bottles and usually won't take the whole thing.  But 8! 8 full ozs! That's awesome!

When my bum hit the scale, we watched and waited.  My weight came in at 22.33lbs! AN INCREASE! I was in the midst of operation starvation and didn't lose weight! booyeah!

Dr. Rosner threw open the door and exclaimed "What are you feeding him? Lead?" She was happy and as surprised as we were and concluded that the plan should remain unchanged.  As such, we're still on the path of no food if doesn't go down the old pie hole.  I'm still eating plenty of my crackers and cheese, not nearly enough fluids but definitely on a positive road! Will update you again soon!

In other news, let me take a minute to update you on our goals from last time:

Physiotherapy:

Since my walking skills have continued to make leaps forward, my physio appointments have been pushed off to every 6 weeks instead of every 2 weeks.  I still can't squat to play but I can stand up and sit down with the help of a piece of furniture.

Texture Therapy:
Well I haven't had any additional formal therapy in this area however, mommy and daddy play macaronis with me on the floor in the living room on a regular basis.

Speech:
No news yet on the "Target Words" classes for my folks but I have started to blurt out the occasional "Aye" which means hi! My sign language has increased to include up to 15 signs now.

Feeding:
Lynn (my dietician) read my food journal memoirs and said that it was a good start. Onward and upward, the plan is still Eat Eat Eat and to increase my liquids. She had suggested to get me to eat fruit. My parents laughed as my fruit interaction has been to scream and cry when it is near me.

School:
The goals for school of accepting foods remain the same and with the help of the girls at daycare writing down my food intake, I've been making strides there too! I even eat a yogurt while I'm there, although I've declined on the formula more often than not.

No word yet on the release date for the "average height and small waist" niche clothing line yet, but my mommy did buy me 9 month old pants and they don't fall off me so much.

All the best my friends, we'll talk again soon!

-Ethan

P.S. I ate a piece of popcorn with buffalo wing seasoning on it and didn't spit it out, how cool is that!

Powered by McNuggets and French Fries

New Year's resolutions

Oh Wow! Where do I start! (As an aside I totally forgot my login password! An indication that it has been too long without an update).
 
Physiotherapy:

 I started up again at Kidsability for Physio. This time around I received a therapist from the Waterloo location, Catharine. She has been working on getting me to bearcrawl up a ramp and to squat, and also to get me to move my feet in a forward propelling action without holding onto anything. I started walking a few steps out from the wall to the waiting arms of Mommy or Daddy.
Now I can basically cross a room, however I need to be enticed by a reward and also be able to end in Mommy or Daddy's arms still.
My Goals: Bearcrawl up the ramp, squat, stand on my own and walk on my own.

Texture Therapy:
I have attended 3 sessions at Blue Balloon, since we last spoke. My homework has been body compressions and face petting towards my mouth to break through my defenses. So far we have been lax on this homework... My Mommy has sent me to Kidsability with Lori (my OT) to focus on playing with different textures. Lori has introduced me to hand painting (which I do not like, but I love squeezing the bottle of paint onto the paper!). Watching her play with Jello and getting her to put pieces of Jello in dolls eyes! I have also put my farm animals in Jello, and like to clean them off with a damp cloth when they get " Jello dirty"! My favourite game to play with Lori is trying to find the "bugs" in dry lentils!
My Goals: to trust enough textures to start getting my hands in them without feeling distressed.

Speech:
I currently have no words. However, I make sure that my point gets across in other ways!
I finally had my speech assessment at Kidsability where it was noted that my receptive language far surpasses any of my expressive skills. I have been placed on a wait list for this program called "Target Words". This is a once a week for 6 weeks program where my parents get trained in techniques to train me.
My Goals: To speak

Feeding:
Over the past 2 months the goal for me has been to put on weight. This was achieved by starting to tube me again up to 24 oz (of my adjusted formula) each day. Since this means I didn't get to control my feeds, I dropped off my oral feeding. I was down to taking less than 10 oz of formula a day and eating 1-2 pieces of dry crunchy snacks. My parents again had the discussion of trying to wean me. Mommy was successful in convincing Daddy to go along with this plan... So....
Fast forward to this week:
I have accepted all my sippy's (mixed with TV and without TV), amounting to 18-24 oz a day of formula (orally!). I have started to enjoy eating mini-go (yogurt) again, however this is best served on the kitchen floor where I can control my anxiety (by going directly to it, or backing away from it).
I have been tube free for 8 days! (the tube is still attached, and is being used strictly for water).
My Goal: PEGasaurus removaurus

Medical Updates:
We visited Dr. Tarnopolsky at McMaster for my followup. He said I am doing really well and that I can see him once a year now!

My parents took me to my dietician (Lynn) to have me placed on my digital throne of judgement. Breath was held!..... 22 lbs! (and if we use the old American growth chart I am at the 15th percentile!) However, if we use the new one that was adjusted for all the fat kids I am at the 5th percentile! (Lynn is using the old one! Yay me!).
She even said that my parents can cut back on the caloric intake for me, as I did well with my weight gain over the past couple months.
My Goal: To not lose weight

School:
Daycare is going well. The ladies always comment on how happy I am during the day. I continue to eat my dry crunchy foods (and even added graham crackers and oatmeal raisin cookies there). We learned recently that my sippy cup went AWOL and was replaced by an imposter! This will be rectified effective tomorrow in hopes that I start accepting my sippys at school again.
My Goal: Accept my sippy at daycare

Odds and Ends:

1) Christmas: I met Santa for the second time in my life, and I am still not scared of him. He did bring me a Mickey Mouse Clubhouse afterall!
2) I love playing the Piano at Grandma and Grandpa's! I am actually quite good at finger placement, I may start saving up for lessons!
3) I hate pants. None of them fit me... all these fat kids never think about the small kids! I either have pants that stay up but barely clear my knees, or pants that fall to my ankles but the length is fine. ARG!
My Goal: Create the Ethan Reimer "Average height and small waist" clothing line. (Working on the logo)

Administration
And what report would this be without a section about administration....
Dave (my infant development rep) was discharged when I turned the ripe old age of 18months. He has been replaced by a SNAP referral at my school who looks at me every once in a while and writes in her binder.

P.S. I was Spiderman for Halloween!

Unscheduled hiatus

I want to apologize for taking an unscheduled hiatus. A lot has happened to me since we last spoke.
This is going to be a long winded post.

As we last left off, Blue Balloon was insisting that I be scheduled for a swallow study to make sure that it was safe for me to swallow. Something that my parents, my feeding team, my pediatrician and my dietician has already deemed I was clinically able to do. The therapists there have finally agreed to take me into their therapy based on clinical clearance by my community feeding team (Lori and Cheryl). What is the next proposed step for my therapy? Apparently to get into their OPT program I need to be assessed by a person in Burlington who will view me for 2 hours and make recommendations and a plan for me to be carried out by the therapist in Waterloo. Apparently the person in Waterloo is only a Level 2 and does not have the experience yet for clinical assessments. We need to go to this Level 3 person at the Blue Balloon in Burlington. The best part is that this assessment is $625. My parents slightly miffed by the experience we've had so far called to get a refund on the second session we had and ultimately pass on this OPT assessment as we are questioning if I would benefit more from OPT or some other therapy. Instead we have been given a free session with Kora for sensory play and we have been told that Kora is also familiar with their OPT program and can make a recommendation if she feels that I would benefit from that type of therapy. As it is essentially a "free session" we agreed and made arrangements to come in again. As it stands we really don't know if we want to continue therapy with them after this session, however it is very unfortunate that they are the only company in town that offers some type of feeding therapy.

The first day of my laxative I did not feel like doing anything!

As we move on to the following week. I had still been eating less orally, but then I started to vomit whenever food would reach my tummy, liquid or solid. Mommy called my Pediatrician and I was seen that day. She said my tummy felt okay but she was almost certain that I was constipated as all the other variables seemed to point there. I was taken for an X-ray where I was deemed to have "quite a lot of poop in there". I was prescribed PEG 3350 (which is a powdered laxative) to take the max amount for 3 days then I could take less until I had a solid type poop. Well for 3 days I couldn't keep any substantial calories down because there was no room for the food to move down to become digested. So Mommy pumped me full of water and apple juice and the occasional pedialyte so I was greatly hydrated and my sugars wouldn't drop. I managed to hold down about 8 oz of formula a day but that was it. I felt incredibly full and so gross as we waited for my poo to be released from my body.


By the 3rd day I had started to poo brown water, Mommy swore she changed about 17 diapers that day all full of this murky brown goop. The need for a steam cleaner has now been moved up our Christmas list. With my puking on her and pooping flowing out of my diapers. However, I still couldn't keep anything in my tummy. I must have really been full! The weekend came when I had my best explosion yet. I woke up to a bed, wall and floor covered in yellow soupy poop. Daddy was lucky that my Grandma R was visiting me that day and I was put in the bath while Daddy cleaned up my room!

 After all this poop and no calories for days, Mommy made another appointment with Dr. Rosner and my dietician. At this point I had started to take some formula and my dry crunchies again with no side of vomit. Dr. Rosner made fun of me eating my "Veggie straws". Stating that they probably have negative calories after I have worked my chewing muscles! She said that I am a trouble maker and that I should be nicer to Mommy so she can relax and watch a T.V show!

I was weighed in at 20 lbs 15oz (so I had lost half a pound). The new plan is to play with some sensory toys to get used to soft and wet things without dealing with food. Also to be topped up via Gtube with Pediasure with Fiber (making sure I get 24 oz of formula/pediasure a day). However, we haven't been able to locate this type of pediasure yet... hmmm . Dr. Rosner does not want me to have juice orally (that's good because I don't like it anyway). But once in a while I can have prune juice in my tube. From this experience, I got some new slimmy toys.. oh boy!

My parents sent me back to daycare this past Friday. Lucky me, I get to go for a day and then get pulled out to visit McMaster on Monday. Sunday night I was extremely congested and woke myself up coughing every 2 or so hours. My nose was like a faucet. I am now back to my normal snot creature. Just in time for my update with Dr. Kozenko.

 My Daddy and Mommy and I headed to McMaster. Along with my snot nose and lack of sleep. I was not in the mood to be trifled with! Our appointment was at 3pm and we were finally escorted in to the room at 3:40pm. I saw Mariya and Amy (Metabolic dietician). My parents apologized for my demeanor as I am usually quite the charmer but not today.

Mariya commented that she didn't even recognize me that I have grown so much. She asked what has changed. Well.. A lot actually! My mommy listed some points about my progress and my limits and that I am attending daycare part time but I have been getting some colds while I have started there.

Dr. Mariya Kozenko (my living guardian angel)

She commented that she has seen many kids and that I was a very smart boy! She said that my speech and feeding will come with time. However, she suggested that I take on swimming as a hobby as it is very good for kids with hypotonia. She said that kids with hypotonia overcome their muscle weakness with strength, so that should help me. She said she would like me to go more than my usual once a week.  She said that she is pleased to hear that I have been shipped to school as it will help me to see other kids and also my colds have been good to build up my immune system.

There wasn't really any talk about genetic counseling as no one is very familiar with my disorder and it doesn't make sense anyway. My mommy has no symptoms of mitochondrial disorder and I was very severe. So if I were to acquire a sibling it would be a toss up, we don't know if it would be another Ethan or another Leeanne. There is no way to know until birth. However, my mommy would have to give birth at McMaster and hope that Mariya is on call.

We left with this picture and with Mariya insisting for an invitation to my wedding in 18 years. She's trying to marry me off young!

So angry

We have been going back and forth with Blue Balloon this last week. Trying to get feeding Therapy for Ethan.

Originally we had gone back and asked if they would take a clinical clearance report from Ethan's community SLP. They said no, because of their comfort level we would need to present medical evidence from a swallow study and upper GI study that clears Ethan medically.

I was thinking maybe with Ethan's 1 month swallow study no one will help us, even though he is clinically cleared. So I made a call to McMaster feeding clinic to set up testing.

Kate is on mat leave, so the other OT Angela was there to take my call. I explained about Ethan, and she remembered a bit about his case. I explained what Blue Balloon needed and what our community SLP had said.

Angela said that basically if an SLP has cleared someone clinically there is not much they can do about getting these tests done. She said there is a huge wait list as outpatient tests only happen on Thursdays, and before they even think about doing these tests, the patient goes through a clinical observation where she watches them eat. If they are cleared clinically, they don't go through the tests.
As Ethan has already been clinically cleared by their community SLP, she assumes that there would be no need for testing and subjecting him to the additional radiation. She offered her number so that Blue Balloon can call her to talk about it. However, I mentioned that we have already suggested calling to get clinical clearance by MAC and they won't, but we'll mention it again.

Frustrated, I did not want to talk to Blue Balloon, so Shawn made the call to them. He reiterated what was said between Angela and myself and said that we could get our community SLP to submit a report to them clinically clearing Ethan. He asked what had made them come to the conclusion that he needs medical clearance and their recommendation to stop feeding Ethan at once. The Blue Balloon SLP said that their assessment was based on the results at Ethan's 1 month swallow study. Shawn told her that for all intensive purposes that at 1 month old Ethan was basically a dead child!
Shawn asked if they have experience with children that have feeding aversions and are tube fed. She said yes and said that they have a child who they are helping currently.
She said that if we get a report from our community SLP that they would review it and decide from there.

Our community SLP is writing the report and will give it to us next week to pass on to Blue Balloon.
Which leads us to today's email from Blue Balloon.

The SLP mentions now that they do not do "food therapy" they do something called "OPT", and with conversations with us she thinks we want "food therapy". No duh! We're there because Ethan is not eating! We have no idea what therapy we want or what these are as no one has explained that there were different programs there or what they are. We had only received "We can't do anything until we get these 2 medical tests and he's cleared medically not clinically". She's asking what specifically we are looking for.

WE DON'T KNOW!!!!!!!!!!!!!! Feeding therapy to us is, spend time with him, and figure out what therapy he needs to progress. If we knew exactly what his deal is, we wouldn't be asking!

In addition I have called Ethan's OT at Kidsabaility to see if she can take him on for more sessions dealing with sensory techniques and not fine motor skills.

So we wait...

The Blue Balloon Bursts

Ethan is in bed recovering from a nasty cold. However, we know you all want to know the details of our therapy session with "Blue Balloon". So we will let little man sleep while we fill you in on what transpired.

We met at the facility and had packed most of Ethan's menu in his lunch pail to bring along a proper cross-section of his food intake.  Our lengthy food journal was in tow and we were prepared to get down to business.  Ethan was having a light eating day so far as he had puked in the morning and didn't want much to drink after that.  He was only at 7 ounces by 3:30 and didn't want to take any sippy before going to the appointment.

We were greeted by Jennifer the SLP and escorted into the therapy playroom where she proceeded to ask us questions about Ethan's history (while having Allison's assessment report in hand). We explained that Ethan was born with a severe mitochondrial disorder and that it was diagnosed as reversible. We explained what this means for Ethan, that he was severe and had these issues, but now he's becoming stronger and has stabilized. Ethan played while we filled her in on Ethan. Kora then joined us to talk about Ethan, she also brought along her student helper who was taking notes. Jennifer told us that there was another SLP in the building more experience working in Pediatrics, so she was going to bring her in as well for some ideas.

With Jennifer and Kora in the room the conversations were focused on what Ethan has been doing and what changed to bring us to Blue Balloon.  We noted that Ethan had eaten well since our initial tube wean in April and it was only a few weeks ago that there seemed to be a significant regression.  After continuing our story, Jennifer excused herself to go find Sara the other SLP.  Kora continued to play with Ethan showing him how to activate the self propelled turtle toy in the room.

After a few moments Jennifer and Sara returned.  "I have filled Sara in on Ethan's history" she said, "and I think she has some questions for you."  Sara introduced herself and shook our hands.  She then looked at us with what seemed like very forced and not at all genuine positivity.  She asked very poignantly about Ethan's medical tests and their outcomes.   We repeated the information of his medical testing consisting of one study done at one month showing a delayed swallow and a small amount of aspiration, the second at 6 months old which was entirely inconclusive as Ethan was just not in the mood to eat barium solution.  She then asked "who cleared him to start feeding orally?"  - A fair question - "No one has ever medically cleared him to eat, although clinically he's been cleared to continue" I muttered.  Suddenly, clouds began to fill the room.  A storm started to brew.

Sara went on to say, "Sometimes as children grow and develop, they become cognitive of how their body is feeling.  Sometimes they stop eating because they are trying to tell you that they are experiencing discomfort in either their esophagus or their GI track." -Leeanne asked, " He has been eating almost his entire calorie requirement to maintain weight for 5 months and has never been sick, shown no discomfort, no vomiting, and no gagging and just one day stops eating as much because he's now suddenly become aware that there may be a physiological issue? "  Sara then replied with an air of insincerity "That's a good question, sometimes when children get older they are able to say no." Leeanne responded. "It seems weird that he would just do a 180. To me it seems like it would be more of a sensory issue with him."

Silence filled the room.  Sara and Jennifer conferred for a moment using only their eyes.  Jennifer continued by saying "We don't feel that it is safe for Ethan to continue to take food by mouth since Ethan has had no medical clearance and only clinical observation.  There is no way to see from the outside what is happening in Ethan's body.  We would suggest that you schedule both another swallow study and and upper GI exam and ensure that there are no physiological reasons for Ethan's regression before we begin treatment."  Before the silence could come rushing back into the room I added "are you certain that these tests are necessary as they can take 4 to 8 months to schedule, welcome to free health care, then even if we do get one set up, Ethan may simply have no interest in eating during the 30 minute window we have to do the test?  Sara responded "we don't feel comfortable treating him until he's been cleared by both these tests." - at this point I should note that Sara comes to us from the US where tests like these don't have as long a waiting period.  They suggested that Ethan should stop all oral feeds immediately until these tests are administered and cleared medically. They indicated that Ethan could come to OT sessions with Kora to work on play skills, however they will be doing nothing with food. (Just what we always wanted to pay someone $125 to play with our child with NO food for 50 minutes).

Since the three therapists now realized they had shattered all our hope and aspiration that this visit would result in steps forward, Kora decided to leave us with an exercise.  She borrowed Jennifer's person and showed us some joint compression techniques.  She didn't mention what it would do or why we should do it, she just showed us something for our troubles, too bad Ethan doesn't stay still long enough to compress his entire body one part at a time.  We left with Kora saying that she will be on vacation for a few weeks but would like to set up a few therapy sessions which they would call us with a few session times if we decided to have them.

Ethan was tube fed on the way home as he still did not want his sippy.

When we arrived home there was a lot to discuss and we had only a few minutes before Leeanne was off to dinner with some friends.  Basically, I was feeling more defeated than ever and came across like a total nut job.  I was so worried that these people had now told me that by feeding my son I was severely endangering him.  In addition, They were very concerned that he may not be taking enough nutrition (based only on the numbers).  With these two things in mind I was focused now on "Shawn, you can't feed Ethan or you might kill him" and "Shawn, you better make sure you feed him 900 calories or you could be harming him".  That's all I could think.  Leeanne on the other hand was much more level headed.  She realized, as with many other things, advice needs to be taken with a grain of salt.  She tried to remind me that Ethan has been eating perfectly well for months and that he obviously doesn't need 900 calories (since his maintenance level is running around 470) but I couldn't let anything convince me otherwise.  Sorry again to my wife, I can spiral downward pretty quickly and need some time to digest and bounce back from experiences like this.

In summary, we didn't get the answers or guidance we anticipated from Blue Balloon. We do understand that they need to protect their liability and make sure that they are comfortable with providing Ethan therapy. We just wished that this was discussed in the first assessment and we didn't have to pay for basically a second assessment with the same people.

The next day, it just so happens that our community feeding team were scheduled to join us, as Ethan has started a cold, which this time has made him vomit as soon as food reaches his belly, he was home with Leeanne, puking and coughing all over her!  They met with Leeanne in the morning however Ethan was snoozing.  Lee didn't mention anything about our visit to Blue Balloon but did suggest that a little bird had told us we should get a swallow study done before continuing to feed Ethan.  She also discussed the sudden change in Ethan's food intake.  They weren't surprised by the decrease in intake as there had been a lot of changes happening and it is very common with children who have been tube fed to have significant set backs now and then.  They took the stance that at this stage, any attempt at a swallow study could be detrimental to his progress as it would involve strapping him into another X-ray machine and force feed him barium which would be very traumatizing for him.   They also noted that the wait is at least 6 months and because Ethan is doing so well clinically, they may not take him anyway.  Not that we're opinion shopping or anything, but it certainly seems odd that there is such a disparity between the two opinions.


After the feeding ladies finished up, they gave us some fun things to try with Ethan and reminded us to keep offering foods but never force anything.  Leeanne had one more thing to do before this whole fiasco would be done.  Lee took Ethan in for a check at the hospital clinic which included an impromptu weigh in.  Lynn (our dietician) set the scale, Ethan was stripped down and propped in the seat.  A moment passed as the scale took its reading.  21.8 ounces?  Really?  He's gained 1 pound in 18 days! Thats Crazy! based on our slight change in his feeding, he's probably up to about 550 calories which, although much less than 900, has still created one pound of mass in our little guy. He has gained twice the amount that is usually gained in the average child over 18 days. Well dad, you missed the mark on this one again.  Guess you don't need to stuff him full of food just yet.

With the news from the clinic and the feeding ladies, we discussed again how to proceed.  Here's the plan (as it stands).  We're going to try out Blue Balloon for their OT services on a probationary basis for a few weeks, we will not talk about food, but there may be some sensory techniques they can offer.  If we don't get anything significant then we'll explore other avenues.  Secondly, we're going to continue to feed Ethan by mouth any time he is willing to accept it.  We will supplement his intake up to 22 ounces per day to make sure he gets enough calories for Ethan's specific needs (which appear much less than the average).  Finally, we're not going to put Ethan through any additional tests and instead move forward and explore the sensory side of eating with him.