Roo is back at speech therapy. We've been fortunate to squeeze him in for one visit per month for now, down from the once a week standing appointment he used to have. After a lengthy letter writing campaign from our Pediatrician, GI team, ENT, and our Speech Therapist, Cigna has agreed to cover Roo's feeding therapy after all.
All I'm going to say is this: Hey, thanks, Cigna, for coming around and seeing the light and not making us retroactively responsible for several thousands of dollars in therapy fees, but next time, it would be super helpful if we didn't have to cancel all our upcoming appointments and revisit the waiting list while you sort your sh*t out. Now we fight to get him back on the regular schedule.
In other oral news, Roo is finally getting his two-year molars. One is through the gums, one is visible and starting to poke through. The two on top are yet to come. Yes, he'll be three and a half in September, my little late bloomer. At least now we know he has more teeth.
Saturday, July 16, 2011
Friday, July 15, 2011
Voting for CURED
I'm not usually a sweepstakes kind of girl, but this one is near and dear to my heart. On August 27 Vivint Gives Back Project will award 2.5 millions dollars to various charities.
One of the charities in the running is CURED Foundation - a fantastic organization that has been working tirelessly to raise money for research on eosinophilic disorders since long before Roo was diagnosed. They work closely with the Cincinnati Children's Hospital, which is at the absolute forefront in research on eosinophilic disorders, and where both Bean and Roo are currently participating in a twins study on EoE. So, obviously, we would be thrilled to see them receive this generous donation.
Basically, the public votes for the next several weeks for their favorite charity. On August 27, the charity with the most votes overall, will receive $250,000. In addition, each charity that receives the most votes in its region, will receive $100,000. Not too shabby, eh?
The top charity at the moment is located in CURED's region (central region) which means that if we can maintain enough votes to be in 2nd place in our region, CURED will receive the $100,000! The problem is, we're currently in 3rd place, but it's by approximately 30 votes?! Just 30 votes are separating my boy from a $100,000 donation for CURED foundation. So please vote if you can. Daily if you'd be so kind. Yes, it makes you login to Facebook but the whole process takes 15 seconds. Just click on the link below to get started.
Vote for CURED - Vivint Gives Back
One of the charities in the running is CURED Foundation - a fantastic organization that has been working tirelessly to raise money for research on eosinophilic disorders since long before Roo was diagnosed. They work closely with the Cincinnati Children's Hospital, which is at the absolute forefront in research on eosinophilic disorders, and where both Bean and Roo are currently participating in a twins study on EoE. So, obviously, we would be thrilled to see them receive this generous donation.
Basically, the public votes for the next several weeks for their favorite charity. On August 27, the charity with the most votes overall, will receive $250,000. In addition, each charity that receives the most votes in its region, will receive $100,000. Not too shabby, eh?
The top charity at the moment is located in CURED's region (central region) which means that if we can maintain enough votes to be in 2nd place in our region, CURED will receive the $100,000! The problem is, we're currently in 3rd place, but it's by approximately 30 votes?! Just 30 votes are separating my boy from a $100,000 donation for CURED foundation. So please vote if you can. Daily if you'd be so kind. Yes, it makes you login to Facebook but the whole process takes 15 seconds. Just click on the link below to get started.
Vote for CURED - Vivint Gives Back
Thursday, July 14, 2011
Summer break
In the event that anyone is still out there reading this after my 2 month hiatus, I'm still here.
I've received a few concerned phone calls and emails asking if things are either really really good or really really bad with Roo and if that's why I've been MIA for a while. So to clear up any doubt, things are neither terrible nor great with us, mostly status quo, in fact. It's just, the kids are on summer break. And I've been trying to work out. And honestly, that's about all I seem to be able to handle on top of the day to day.
It's pathetic and perhaps selfish too, but I'm in a good workout groove and I'd like to stay here for while. The downside of course, is that after warning the children repeatedly to interrupt me only in the event of a true emergency while I work out, then requesting further compliance so I can squeeze in a shower, it just seems terribly unfair (and unrealistic) to expect them to leave me alone for another half hour so I can answer emails and update the blog. So I haven't.
What we have been doing instead is our own version of summer school, or as they dubbed it, "Mama School". We're covering all kinds of topics from Spanish language to circuit training. Turns out 3 and 5-year-olds are wired for circuits. They adore 30 second intervals. It goes something like this:
30 seconds each
I've received a few concerned phone calls and emails asking if things are either really really good or really really bad with Roo and if that's why I've been MIA for a while. So to clear up any doubt, things are neither terrible nor great with us, mostly status quo, in fact. It's just, the kids are on summer break. And I've been trying to work out. And honestly, that's about all I seem to be able to handle on top of the day to day.
It's pathetic and perhaps selfish too, but I'm in a good workout groove and I'd like to stay here for while. The downside of course, is that after warning the children repeatedly to interrupt me only in the event of a true emergency while I work out, then requesting further compliance so I can squeeze in a shower, it just seems terribly unfair (and unrealistic) to expect them to leave me alone for another half hour so I can answer emails and update the blog. So I haven't.
What we have been doing instead is our own version of summer school, or as they dubbed it, "Mama School". We're covering all kinds of topics from Spanish language to circuit training. Turns out 3 and 5-year-olds are wired for circuits. They adore 30 second intervals. It goes something like this:
30 seconds each
- Frog jumps
- Sprint around cones
- Jumping jacks
- Crab walk
- Forward rolls
- Rest/water break
- Do it again
Friday, May 6, 2011
Medical Necessity
Well, that whole what to do about speech therapy question might get cleared up for us after all. Just got a call that our insurance hasn't covered any of Roo's feeding therapy since the beginning of February. They covered it up until February "in error" and fortunately they have not asked for their money back. Yet.
Apparently Roo's feeding therapy is neither restorative nor medically necessary and to top it off they claim he has no underlying conditions which should impair his swallowing. Like say, eosinophilic esophagitis or the laryngeal cleft the ENT found. Forgive me but I'm about to send my puking, gagging, failing to thrive, hour and a half to eat a decent meal kid over to their offices for a quick demo.
We're appealing the decision but at $400 a pop for weekly sessions, this isn't going to be cheap if we lose. If you need me today I'll be busy gathering letters of medical necessity from our slew of doctors.
Apparently Roo's feeding therapy is neither restorative nor medically necessary and to top it off they claim he has no underlying conditions which should impair his swallowing. Like say, eosinophilic esophagitis or the laryngeal cleft the ENT found. Forgive me but I'm about to send my puking, gagging, failing to thrive, hour and a half to eat a decent meal kid over to their offices for a quick demo.
We're appealing the decision but at $400 a pop for weekly sessions, this isn't going to be cheap if we lose. If you need me today I'll be busy gathering letters of medical necessity from our slew of doctors.
Thursday, May 5, 2011
Feeding Therapy
Our speech therapist thinks Roo has made big progress in the past few months and isn't sure she needs to see him anymore. I agree that he often eats well in her office. All the games of Connect 4, sticker charts, balloon timer, and the pretty young speech therapist provide exactly the level of incentive he requires to finish a decent meal. She believes that at this point it's largely a matter of keeping him motivated. He can eat. He just chooses not to most of the time. And she's right.
But I'm torn. He can eat when he sets his mind to it. He crunches up Dum Dum lollipops like nobody's business. He can eat raw carrots, Ruffles potato chips, pork, bacon, grape tomatoes, and all kinds of other foods that require ample chewing. But without fail, he still gags on yogurt. Muffins, most cookies, and soft breads, pancakes and the like are still off limits. And while we know that his esophagus is clear right now, he still threw up after a single bite of ice cream with sprinkes this weekend. My theory is that it was a textural issue...the mixing of tiny crunchy pellets along with soft, cold, mushy ice cream. That kind of stuff still happens a lot.
If we are to believe the scopes, GI's, ENT, and speech therapist, there's not really a physical cause remaining at this point for the frequent vomiting and general food aversion. He still takes Prevacid because I think with or without the EoE he suffers from reflux too. I'm thinking of continuing the speech because I don't really know what else to do with him.
But I'm torn. He can eat when he sets his mind to it. He crunches up Dum Dum lollipops like nobody's business. He can eat raw carrots, Ruffles potato chips, pork, bacon, grape tomatoes, and all kinds of other foods that require ample chewing. But without fail, he still gags on yogurt. Muffins, most cookies, and soft breads, pancakes and the like are still off limits. And while we know that his esophagus is clear right now, he still threw up after a single bite of ice cream with sprinkes this weekend. My theory is that it was a textural issue...the mixing of tiny crunchy pellets along with soft, cold, mushy ice cream. That kind of stuff still happens a lot.
If we are to believe the scopes, GI's, ENT, and speech therapist, there's not really a physical cause remaining at this point for the frequent vomiting and general food aversion. He still takes Prevacid because I think with or without the EoE he suffers from reflux too. I'm thinking of continuing the speech because I don't really know what else to do with him.
Wednesday, May 4, 2011
Props for Grampy
Budesonide, or Pulmicort, if you prefer, is an asthma medication. It comes in individual packets or respules dissolved in a couple of milliters of liquid that are meant to be used in a nebulizer specifically for inhalation to treat, well, asthma, of course. For eosinophilic esophagitis, the protocol is a bit different. You have to drink the stuff. To make it more palatable and stick-to-your-esophagus thick, GI specialists the world over have recommended mixing it with a few packets of Splenda to create a sickly sweet sludge-like consistency which is supposed to adhere to the esophagus walls, thus maximizing the effectiveness of the steroid. Anyone out there ever eat a whole packet of Splenda? How about five at a time?
A few months ago when we were first looking at a budesonide trial for Roo, we were dreading it. See, we were the teeniest bit skeptical that we could get this kid, who at age three, has yet to ingest a dose of Children's Tylenol successfully due to a hyper-sensitive gag reflex, to swallow five packets of Splenda mixed with medicine. Not once, but twice a day for eight weeks.
As I was hemming and hawing about how to make this happen, and whining just a bit perhaps about the unfairness of it all over the phone to my parents, my dad, Grampy to Roo, Bean, and Looly, devised his own brilliant solution. Sorbet. Roo can't get enough. It's thick, tangy, sweet but not too sweet, icy enough to dull the flavor, has few ingredients, and let's face it, way more fun to eat than Splenda. After one horrifically unsuccessful attempt with the Splenda, I nervously approached our GI team with Grampy's idea and to my surprise they agreed to let us try it. Roo literally ate it up. For what ended up being more than ten weeks due to scheduling difficulties with the scope.
And get this, as it turns out, our GI team is now passing along Grampy's new recommendation to other families starting on budesonide for EoE. Turns out sorbet is the new Splenda. And Grampy is the Man!
A few months ago when we were first looking at a budesonide trial for Roo, we were dreading it. See, we were the teeniest bit skeptical that we could get this kid, who at age three, has yet to ingest a dose of Children's Tylenol successfully due to a hyper-sensitive gag reflex, to swallow five packets of Splenda mixed with medicine. Not once, but twice a day for eight weeks.
As I was hemming and hawing about how to make this happen, and whining just a bit perhaps about the unfairness of it all over the phone to my parents, my dad, Grampy to Roo, Bean, and Looly, devised his own brilliant solution. Sorbet. Roo can't get enough. It's thick, tangy, sweet but not too sweet, icy enough to dull the flavor, has few ingredients, and let's face it, way more fun to eat than Splenda. After one horrifically unsuccessful attempt with the Splenda, I nervously approached our GI team with Grampy's idea and to my surprise they agreed to let us try it. Roo literally ate it up. For what ended up being more than ten weeks due to scheduling difficulties with the scope.
And get this, as it turns out, our GI team is now passing along Grampy's new recommendation to other families starting on budesonide for EoE. Turns out sorbet is the new Splenda. And Grampy is the Man!
Tuesday, May 3, 2011
Free and clear...for now
The biopsy results are in and Roo is officially a responder! Following a ten week trial of drinking budesonide respules stirred into a tablespoon of lemon sorbet two times a day, his esophageal tissue is healed up and eosinophil-free, at least for the moment. Psyched is an understatement. Apparently, about 70-85 percent of people do respond to the steroid treatment, but can you blame me for not being terribly optimistic? This is the best news we've had for a while.
He's off the budesonide now until symptoms reappear (not that they've exactly disappeared, but more on that another time). Plans for a feeding tube are on hold as he's put on a little weight. In fact, he jumped up slightly on the growth chart. He's still below first percentile for weight, but he's closing in a bit. He hit 25 pounds for the first time this week! After more than eight months of stagnation, he grew almost an inch and his height is back tracking around the 5th percentile. We're starting to retire the size 12-18 month pants. And as if that's not enough, one of his two year molars is finally peeking through the gums. Yes, he's nearly 38 months and just getting his two year molars. Bean's had hers for about a year now.
We're keeping dairy in his diet bringing his list of forbidden foods is down to:
He's off the budesonide now until symptoms reappear (not that they've exactly disappeared, but more on that another time). Plans for a feeding tube are on hold as he's put on a little weight. In fact, he jumped up slightly on the growth chart. He's still below first percentile for weight, but he's closing in a bit. He hit 25 pounds for the first time this week! After more than eight months of stagnation, he grew almost an inch and his height is back tracking around the 5th percentile. We're starting to retire the size 12-18 month pants. And as if that's not enough, one of his two year molars is finally peeking through the gums. Yes, he's nearly 38 months and just getting his two year molars. Bean's had hers for about a year now.
We're keeping dairy in his diet bringing his list of forbidden foods is down to:
- peanuts
- tree nuts
- eggs
- apple
- peach
- beef
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