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.
Hi Ethan's Daddy, As I read each line of your update, I could clearly feel your desperation and frustration as a parent dealing with such a challenge. As parents we always feel that we have the best interests of our child in mind. When you're a parent dealing with a health-compromised child, the frustration that we can't find a way to "fix" things translates into guilt, into fights with your spouse, into anger at the "system" - righteous anger sometimes. We've been there. Our youngest son is a 35 yr old quadriplegic (Cerebral Palsy functioning at 10 months old). He was about 12 when he started to lose the ability to swallow his food. We had just brought him home from his two weeks at Easter Seal camp and had been given a picture by one of the camp counsellors. Looking at the picture, we saw a gaunt, thin little boy and it was shocking to us. We had known but were in denial about the fact that he would need tube feeding to survive. We immediately scheduled him for a test that would show how the food moves down his gullet to confirm whether or not the muscles in his esophagus were weakening. We watched the procedure through an Xray type of machine where we could see him trying to swallow the rice pudding, without success. As devastating to us as it was that would no longer be able to enjoy his mashed potatoes and veggies and his so love desserts, we knew that what was best for him was the tube feed. That day he was fitted with a Mickey tube and within weeks, he started to gain weight and was obviously a healthier boy. Now obviously our situation differs from yours in that we hve a profoundly disabled child. The issue of tube feeding would be doubly hard for you and Leanne since you have such a bright, engaging, "normal" little boy. If the possibility is there that even with tube feeding, his ability to eat can be encouraged through the proper therapy, it might be a helpful solution at this moment in time - and never ever look at it as a "cop out" - you want your child to remain healthy and he needs the proper nutrition to do that. I read an interesting article about a couple in Ohio dealing with Mito disorders in 2 of their children and their dealings with tube feeding. You may have seen it already but if not, here it is: http://www.presspublications.com/from-the-press/9529-kids-keep-on-smiling-despite-ongoing-fight-with-mito
ReplyDeleteAlso another site I found: tp://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934627/k.3711/What_is_Mitochondrial_Disease.htm
It's shameful, but not unsuprising, that the "professionals" put in place to help you and Leanne and Ethan through this, are failing at what they're supposed to do. We moved from St. John's, NL 25 years ago to London, ON to be able to get proper health care and support that was non-existent in Newfoundland, and what was there, was at our expense. Perhaps you should take a moment to consider bringing your concerns about the help being provided by these "healthcare professionals" to them. Whether this will help or not is hard to say. But be careful taking on the additional burden of paying for therapy that has yet to be proven. And I know how you feel wanting to do everything you can to help your child - just be cautious in what you undertake. When a couple has to deal with what can be such an overwhelming problem, relationships can become damaged so easily and it takes extraordinary commitments from both parties to ensure you remain a united force and remember what made you fall in love in the first place. It's not easy but you can do it.
I say this with love and concern and hope you don't mind my unsolicited advice.
One last thing ... even in the darkest moments, never ever lose hope.
xx Donna Lockyer (your Mom-in-law's friend)
Hi Donna,
ReplyDeleteThank you so much for your comment and advice. Both mean so much to us! We're just got to the end of our rope and know we need to find the start of a new rope.