Hi Everyone,
I'm going to be taking the reigns for this one, but don't worry Ethan will be back again soon. As you may remember, a few weeks ago we had Ethan weighed again. He put on 11 grams since our last weigh in just one month earlier. Suffice it to say, this isn't enough. His pediatrician told us he needs to gain 400 grams by his next checkup or we would have to explore more drastic measures.
We thought we were doing pretty good so far. Ethan was eating 18 ounces per day and was occasionally eating some solids. I know we didn't have a human garbage disposal on our hands but we felt like he was making progress. That weigh in really hit home that we were nowhere even close to progress. It was suggested that we increase his formula concentration a bit to pump up the calories which we did. Our increase turned into his decrease. We increased his concentration by 14% and in turn he decreased how much he would take by 33%. Doesn't take an accountant to figure out that this didn't work. Now Ethan was only taking 12 to 14 ozs per day.
By the weekend it was getting pretty upsetting. He still wasn't taking more than 14 ozs and had basically started shaking his head and swating everything away. We were on a one way trip back to square one. What isn't ever explained to you outright is how much does your baby need to eat? Well the internet suggests that Ethan needs 900 calories per day to maintain healthy growth and development. Well, after doing some math on his 18 ounces per day, he's pushing about 450 calories and maybe another 100 or so in the small snacks he sparsely accepts through the day. So... just over half what he needs. That's not going to do it.
Many of you may know me as a very positive and -glass is always full kind- of person. I tried to take all of Ethan's issues and look beyond them to see that he is fine. I realized though that I was living in a dream world. Ethan is not fine. He is falling and his daddy isn't doing anything to catch him. I lay awake that Saturday night thinking of my little Mito Warrior. I lay awake wondering what can we do. I lay there holding back tears as I realized I wasn't seeing the realities right before me. I'm sorry Ethan Daddy failed you, I'm sorry Leeanne, I wasn't here.
The hardest thing is the fighting that we had been doing. I know that it's been because of our vastly different views of situations. We don't fight over who should take the garbage out, or my beard hair left in the sink or even when Leeanne's hair clogs the vacuum cleaner . We fight about whether or not we should tube feed our son another 4 oz. Whether it's the right time to do his physio exercises, whether or not to fix the position of his weak foot, to leave his shoes on or take them off, whether or not to pay for private therapy. We do not fight about what normal couples fight about and it kills us. I realized that maybe I wasn't seeing what I should be. I realized I wasn't seeing the difficulties my son is facing.
I spent the next several hours into the middle of the night catching up on research that Leeanne has been trying to show me, and looking for options and trying to figure out what support is actually out there. We concluded long ago that his community feeding team wasn't helping us at all. They join us for a few minutes once a month and ask "did he try anything new?" we list all the items he threw on the ground until we get to the "oh this time he put a crispy mini in his mouth". They proceed to rhyme off 5 or 6 things that are sort of like a crispy mini and say "try all these and we'll see how it goes?" Where are the oral exercises, the suggestions for environmental changes, where's the hands on approach? It doesn't exist here. They rarely asked to see him eat, they never showed us any feeding methods or techniques, and worst of all, they schedule there in home appointment for days that Ethan isn't even here, and that's apparently ok with them.
After browsing the web finding nothing local for feeding support and nearly coming to the end of the internet, I found Blue Balloon.
Blue Balloon is a local private therapy group near Northfield and Bridge. We sent an email giving them Ethan's story and they replied by scheduling us for our initial assessment. A few days later we joined the site coordinator Allison for our assessment. We recounted the whole story from start to finish and described our frustrations and our feelings up helplessness with the lack of guidance and help we've had so far. Allison invited her OT Cora in to join us and once she was up to speed we were given some homework. We have been tracking Ethan's feeding for a week now using a log. So far, it's been pretty depressing as most of the entries are: "Ethan started to take his sippy but stopped after only a few ounces." or "the site of food makes him scream and claw away" We track his mood, his environment, who fed him, all the types of food we offered and what he did with them. Hopefully they can find something in our scrawling that provides them some idea of how to help.
We return there tomorrow afternoon to try and devise a plan. Their preliminary assessment suggested appointments once or twice a week with both their occupational therapist and their speech therapist. Sounds like what we have now only it costs $250/wk ($13,000 per year, yup that's the accountant coming out). So far they seem to be more hands on and willing to teach us something.
Since Ethan isn't eating very much, sometimes only 6 ounces a day, we've had to resume tube feeding. I can't begin to relay how devastated I was the first time I had to tube feed after Ethan has shown so much strength and will over those 4 months of eating lots every day. Now it's like none of that mattered. Now everyday we're tube feeding more and more.
I hope our new friends can help, and I hope they can help fast. It
seems to me that we're already pretty far behind the curve as everyone's
16 month old kids are eating themselves silly and starting to talk.
Ethan's pretty far off both those events.
Please keep Ethan in your thoughts, we need all the help we can get for him, now more than ever.
Wednesday, 29 August 2012
Wednesday, 15 August 2012
The Ethan ultimatum, must gain weight!
Hello All, Ethan here!
A lot has happened over the past two weeks so let's get right down to it!
On Monday I played hookie from day care with Mommy and Daddy and went to see Dr. Rosner, my pediatrician. We were feeling very anxious about this visit as it involved another important weigh in. We arrived at the clinic and endured a very short wait before being escorted into one of my usual rooms by our dietician Lynn. She did my weight and length and here's my new stats:
Weight: 20lbs 8.4oz
Height: 31 inches (done by inaccurate measuring tape.)
Those of you who remember my last weigh in, I was 20lbs 8oz. Not exactly packing on the pounds here. This was rough on both Mommy and Daddy because I was eating tons of formula, some extra foods, and it really seemed like I was getting heavier. Now just to put it all in perspective, I gained .4 ounces or about 11 grams in 4 weeks. I am supposed to be gaining 400 grams every 4 weeks. So I was short about 389 grams (or 97.25%, thanks dad, now put away your calculator) for those four weeks. Despite this set back, we carry-on, our new plan of action is keep doing what we're doing but lets make that old formula bottle a little more potent, we're on to 4 scoops per 6 oz from 3.5 scoops. Nothing too drastic but we're hoping it makes the difference.
After the weigh in and measurements, doctor Rosner came in to see me. We talked about some of the new things I'm doing. She looked me over and mentioned that my shoulders were getting a lot stronger but now my ankles are weak. She checked my lungs and heart and I sounded good. She added to the notes on my feeding and we set the goal of one month for me to gain weight. If I don't pack on 400 grams by September 14th more drastic measures will need to be taken to fatten me up!
The reintroduction to tube feeding was mentioned. :(
We glazed over the discussions of removing the tube as the food and weight issues had already trumped that option. Mommy did ask though who would make the final call to remove the tube and Dr. Rosner said it would be her. She then asked us, "Who put the tube in?" Mommy thought for a moment and said "Dr. Stewart". Dr. Rosner appeared confused. "You know, the head of surgery at Mac." Dr. Rosner, still looking awkwardly at Mommy confirmed, "Do you mean Fitzgerald?". Mommy's eyes widened, "Yes!". Dr. Rosner's puzzled look faded as she laughed, "How did you get Stewart?" Daddy chimed in, "Dr. Stewart delivered Ethan." Everyone paused as the cloud of confusion began to lift from the room. Dr. Rosner added poignantly, "Oh, Dr. Stewart is my brother!" Well, what a small world! Before staying to find out if she had any other siblings or cousins in the medical profession we finished up and headed out the door as I needed a sippy and a sleepy!
Next on the agenda was my Tuesday trip to Kidsability. This was daddy's first time meeting Lori and his first time seeing the facilities! The last visit from Cathy for my gross motor physio workout did not go well and I screamed my little head off the whole time. This left daddy a little concerned about my visit with Lori as I have not been in the mood to be trifled with lately. We arrived promptly at 10 o'clock. It was raining pretty bad and daddy forgot an umbrella (silly daddy). We ran in the front door and squeaked over to reception. "I have Ethan here to see Lori" daddy proclaimed. The woman behind the desk smiled and told us she would let her know we were here.
A few minutes passed and Lori came out to greet us. I was standing up against daddy's legs and Lori (OT) was excited to see me. Daddy walked me over to our usual hockey player adorned room, yes we walked! (well daddy held both my hands for balance but my feet did some serious one foot in front of the other action). Once we settled in the room, Lori took out some toys for me to play with and asked daddy how I was doing. Other than the stunted growth, daddy had only positive notes to make about my progress. Lori decided to start with some blocks to see if I could stack several on top of each other. She showed me a few times and then left me to it.
I placed one block on the mat in front of me. Then I reached for a second, on top it went. I glanced around seeking out a third. EUREKA! Block number three found and stacked! Lori was very happy and said that kids my age are usually stacking three blocks. While she was telling daddy that this was great progress I reached out and picked up block number four. On it went! Lori and daddy both stopped. "Look at him go!" shouted daddy. Four blocks was quite the feat as the blocks were getting pretty tall and my shoulders had to stretch to keep adding them. Daddy was sooooo proud he had to take a picture.
After posing for the snapshot, daddy put away his camera - but I wasn't done yet! I found another block, hoisted it high in the air and carefully placed it on top of the tower. Lori and daddy went quiet with anticipation for what would happen next, would I try another? Would I topple my now wobbly tower? I found the last block laying before me and began to raise it up. Up it went, passed my tummy, past my nose, past the 5 blocks that had already become my day's triumph. I moved the block over the top of my tower and gently placed it atop it's friends. "Six blocks!" Lori exclaimed, "we usually expect that of a four year old!" Daddy reached for his blackberry to take another photo but it was too late, I had karate chopped my masterpiece to the floor.
With a gleeful sense of curiosity we forged on to playing with a puzzle. Lori pulled out a puzzle which contained 5 pieces all different shapes. A circle, square, rectangle, triangle and oval now lay at my feet. She placed the wooden puzzle frame in front of me which had an empty spot that corresponded with each of the small pieces. She showed me how to put the first one in and let me do my thing. I reached for the square and examined it for a moment. I looked down at the 4 remaining holes and with deliberate intent I placed the square over the hole marked "circle". Darn it, that didn't work. I picked up the piece again and placed it now in the hole marked "square". Perfect! I repeated this process until all the shapes had been united with their puzzle pals and the picture was complete. Lori was happy again and said that I was only supposed to do two pieces to be well on track developmentally.
Finally Lori brought out some drawing tools and paper. I have so far not shown much interest in colouring as you may recall from our last meeting with Dave. Well, nothing new here, I struggled to figure out which end was the one that made the colours come out. Daddy did his best to help by holding up the marker to me and pointing at the writing end saying "Ethan, this is the business end." I made a few small marks before turning the marker upside down. That was that, I guess we'll leave drawing for another day.
Happy overall we thanked Lori and made arrangements to return for another session in 4 weeks.
A lot has happened over the past two weeks so let's get right down to it!
On Monday I played hookie from day care with Mommy and Daddy and went to see Dr. Rosner, my pediatrician. We were feeling very anxious about this visit as it involved another important weigh in. We arrived at the clinic and endured a very short wait before being escorted into one of my usual rooms by our dietician Lynn. She did my weight and length and here's my new stats:
Weight: 20lbs 8.4oz
Height: 31 inches (done by inaccurate measuring tape.)
Those of you who remember my last weigh in, I was 20lbs 8oz. Not exactly packing on the pounds here. This was rough on both Mommy and Daddy because I was eating tons of formula, some extra foods, and it really seemed like I was getting heavier. Now just to put it all in perspective, I gained .4 ounces or about 11 grams in 4 weeks. I am supposed to be gaining 400 grams every 4 weeks. So I was short about 389 grams (or 97.25%, thanks dad, now put away your calculator) for those four weeks. Despite this set back, we carry-on, our new plan of action is keep doing what we're doing but lets make that old formula bottle a little more potent, we're on to 4 scoops per 6 oz from 3.5 scoops. Nothing too drastic but we're hoping it makes the difference.
After the weigh in and measurements, doctor Rosner came in to see me. We talked about some of the new things I'm doing. She looked me over and mentioned that my shoulders were getting a lot stronger but now my ankles are weak. She checked my lungs and heart and I sounded good. She added to the notes on my feeding and we set the goal of one month for me to gain weight. If I don't pack on 400 grams by September 14th more drastic measures will need to be taken to fatten me up!
The reintroduction to tube feeding was mentioned. :(
We glazed over the discussions of removing the tube as the food and weight issues had already trumped that option. Mommy did ask though who would make the final call to remove the tube and Dr. Rosner said it would be her. She then asked us, "Who put the tube in?" Mommy thought for a moment and said "Dr. Stewart". Dr. Rosner appeared confused. "You know, the head of surgery at Mac." Dr. Rosner, still looking awkwardly at Mommy confirmed, "Do you mean Fitzgerald?". Mommy's eyes widened, "Yes!". Dr. Rosner's puzzled look faded as she laughed, "How did you get Stewart?" Daddy chimed in, "Dr. Stewart delivered Ethan." Everyone paused as the cloud of confusion began to lift from the room. Dr. Rosner added poignantly, "Oh, Dr. Stewart is my brother!" Well, what a small world! Before staying to find out if she had any other siblings or cousins in the medical profession we finished up and headed out the door as I needed a sippy and a sleepy!
Next on the agenda was my Tuesday trip to Kidsability. This was daddy's first time meeting Lori and his first time seeing the facilities! The last visit from Cathy for my gross motor physio workout did not go well and I screamed my little head off the whole time. This left daddy a little concerned about my visit with Lori as I have not been in the mood to be trifled with lately. We arrived promptly at 10 o'clock. It was raining pretty bad and daddy forgot an umbrella (silly daddy). We ran in the front door and squeaked over to reception. "I have Ethan here to see Lori" daddy proclaimed. The woman behind the desk smiled and told us she would let her know we were here.
A few minutes passed and Lori came out to greet us. I was standing up against daddy's legs and Lori (OT) was excited to see me. Daddy walked me over to our usual hockey player adorned room, yes we walked! (well daddy held both my hands for balance but my feet did some serious one foot in front of the other action). Once we settled in the room, Lori took out some toys for me to play with and asked daddy how I was doing. Other than the stunted growth, daddy had only positive notes to make about my progress. Lori decided to start with some blocks to see if I could stack several on top of each other. She showed me a few times and then left me to it.
I placed one block on the mat in front of me. Then I reached for a second, on top it went. I glanced around seeking out a third. EUREKA! Block number three found and stacked! Lori was very happy and said that kids my age are usually stacking three blocks. While she was telling daddy that this was great progress I reached out and picked up block number four. On it went! Lori and daddy both stopped. "Look at him go!" shouted daddy. Four blocks was quite the feat as the blocks were getting pretty tall and my shoulders had to stretch to keep adding them. Daddy was sooooo proud he had to take a picture.
After posing for the snapshot, daddy put away his camera - but I wasn't done yet! I found another block, hoisted it high in the air and carefully placed it on top of the tower. Lori and daddy went quiet with anticipation for what would happen next, would I try another? Would I topple my now wobbly tower? I found the last block laying before me and began to raise it up. Up it went, passed my tummy, past my nose, past the 5 blocks that had already become my day's triumph. I moved the block over the top of my tower and gently placed it atop it's friends. "Six blocks!" Lori exclaimed, "we usually expect that of a four year old!" Daddy reached for his blackberry to take another photo but it was too late, I had karate chopped my masterpiece to the floor.
With a gleeful sense of curiosity we forged on to playing with a puzzle. Lori pulled out a puzzle which contained 5 pieces all different shapes. A circle, square, rectangle, triangle and oval now lay at my feet. She placed the wooden puzzle frame in front of me which had an empty spot that corresponded with each of the small pieces. She showed me how to put the first one in and let me do my thing. I reached for the square and examined it for a moment. I looked down at the 4 remaining holes and with deliberate intent I placed the square over the hole marked "circle". Darn it, that didn't work. I picked up the piece again and placed it now in the hole marked "square". Perfect! I repeated this process until all the shapes had been united with their puzzle pals and the picture was complete. Lori was happy again and said that I was only supposed to do two pieces to be well on track developmentally.
Finally Lori brought out some drawing tools and paper. I have so far not shown much interest in colouring as you may recall from our last meeting with Dave. Well, nothing new here, I struggled to figure out which end was the one that made the colours come out. Daddy did his best to help by holding up the marker to me and pointing at the writing end saying "Ethan, this is the business end." I made a few small marks before turning the marker upside down. That was that, I guess we'll leave drawing for another day.
Happy overall we thanked Lori and made arrangements to return for another session in 4 weeks.
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