Tuesday, April 20, 2010
Sunday, April 18, 2010
2 pounds
2 pounds gained on EleCare in one week. What more is there to say? Fantastic! At least for us, going from 36 pounds to 38 pounds is a big deal.
Still a little blood, but not that bad -- stools are pretty liquidy.
Last quick note: the Children's Hospital is covering 100% of the costs for the enteral nutrition!!! We applied for financial aid and they decided, ultimately, to grant it. This is such great news and we are super excited about being able to go forward with this without the financial worry.
Still a little blood, but not that bad -- stools are pretty liquidy.
Last quick note: the Children's Hospital is covering 100% of the costs for the enteral nutrition!!! We applied for financial aid and they decided, ultimately, to grant it. This is such great news and we are super excited about being able to go forward with this without the financial worry.
Wednesday, April 14, 2010
EleGood
Cyrus is doing a fantastic job with the EleCare. In the last three days, he's had about 46-50 ounces each day -- which is roughly 1500 calories. Stools are still runny, but less frequent (~ 2/day).
We created the "EleCare calendar" that has special activities planned on it to help him get through the EN... but he seems pretty unphased by not eating other foods and he appears to feel really good.
We're now weighing him daily and he's gained almost a half a pound in just three days on EN.
We've been able to buy EleCare on Ebay for about $16/can -- much better than the $50/can (from what we hear) direct cost.
Lastly, I have to say that enteral nutrition is WAY easier on us as parents compared to the SCD! It makes decisions on what to feed him, well... easy. Prep work... easy. The guilt in eating a bowl of cereal for breakfast... well, I still feel guilty, but not *as* guilty! With all of that said, I think we'll still go back to the SCD once we're done with this 8-12 week round of EN.
We created the "EleCare calendar" that has special activities planned on it to help him get through the EN... but he seems pretty unphased by not eating other foods and he appears to feel really good.
We're now weighing him daily and he's gained almost a half a pound in just three days on EN.
We've been able to buy EleCare on Ebay for about $16/can -- much better than the $50/can (from what we hear) direct cost.
Lastly, I have to say that enteral nutrition is WAY easier on us as parents compared to the SCD! It makes decisions on what to feed him, well... easy. Prep work... easy. The guilt in eating a bowl of cereal for breakfast... well, I still feel guilty, but not *as* guilty! With all of that said, I think we'll still go back to the SCD once we're done with this 8-12 week round of EN.
Sunday, April 11, 2010
Beginning Our Journey on Elecare
Today marks the second day of the Elecare diet! At least 50 ounces a day is the goal. We are making our son an Elecare calendar to help celebrate his success each and every day since we know this is not going to be an easy 8 weeks (at least), but one we feel are little guy is certainly capable of achieving. Throughout the course of this therapy, we are including fun activities on his calendar he will look forward to to help all of us celebrate each day. Yesterday was his first day and overall he did an amazing job! He was able to get down about 45 ounces. His appetite has been off for the past week because of the stomach flu. Last Monday night he was throwing up every 30 minutes for nine hours straight! Due to this, he lost some weight, but we will be tracking his weight during this journey and we pray to see some increases in his growth. We also pray to see improvement in his gut.
We are still waiting to hear back from Seattle Children's Hospital regarding financial assistance to cover the cost of Elecare. My husband got a call from them last week because they wanted some more information from us, but the individual he spoke to made it sound unlikely that we would receive any assistance due to the income requirements. We were able to get a two week supply at roughly 16 dollars a can by bidding on Ebay though. Still pricey, but much better than paying 60 dollars per can!
We are still waiting to hear back from Seattle Children's Hospital regarding financial assistance to cover the cost of Elecare. My husband got a call from them last week because they wanted some more information from us, but the individual he spoke to made it sound unlikely that we would receive any assistance due to the income requirements. We were able to get a two week supply at roughly 16 dollars a can by bidding on Ebay though. Still pricey, but much better than paying 60 dollars per can!
Thursday, April 1, 2010
From SCD to EleCare
Our boy will spend the next 8-10 weeks off of the SCD and instead will be drinking vanilla EleCare. It's a big change, for sure, but one that will hopefully get the inflammation under control -- something SCD alone, or SCD with Entocort, has not been able to do.
I think we'll start the day after Easter (not that he'll be eating chocolate easter bunnies that day). The nutritionist was able to give us two cans of EleCare to get started with... which will last approximately 2.5 days! After researching my insurance plan benefits, she notified me that we needed to figure out another way of paying for it. At roughly $60 per can, and needing about 25 cans per month, she handed me a financial assistance form that the Children's Hospital will consider on a case by case basis. They may help with 100% of the cost, 50% of the cost, or none of it... we'll find out in a couple of weeks. Meanwhile, we need to start bidding on Ebay.
One way or another, we'll figure out a way to pay for it. The question will then become: what do we feed our boy after (if?) he goes into remission. Do we go back to SCD, or try something more normal and balanced? I do think the SCD can be balanced if you are able to include the whole list of legal foods, but we were just never able to get past stage 2. This will be a big dilemma for us... we would like to see if the diet works to maintain a state of remission (once in remission).
I think we'll start the day after Easter (not that he'll be eating chocolate easter bunnies that day). The nutritionist was able to give us two cans of EleCare to get started with... which will last approximately 2.5 days! After researching my insurance plan benefits, she notified me that we needed to figure out another way of paying for it. At roughly $60 per can, and needing about 25 cans per month, she handed me a financial assistance form that the Children's Hospital will consider on a case by case basis. They may help with 100% of the cost, 50% of the cost, or none of it... we'll find out in a couple of weeks. Meanwhile, we need to start bidding on Ebay.
One way or another, we'll figure out a way to pay for it. The question will then become: what do we feed our boy after (if?) he goes into remission. Do we go back to SCD, or try something more normal and balanced? I do think the SCD can be balanced if you are able to include the whole list of legal foods, but we were just never able to get past stage 2. This will be a big dilemma for us... we would like to see if the diet works to maintain a state of remission (once in remission).
Subscribe to:
Comments (Atom)