Wednesday, May 15, 2013
In honor of Eosinophil Awareness Week and on behalf of John, Doug and I are challenging all our friends and family, and now you, my blog readers, to eat like John for a week (or as long as you can).
John can eat turkey, sweet potatoes, green beans, plums/prunes, and we are trialing peaches and golden yukon potatoes.
I'm asking that you take some time to find out what it's like to live with this disease. Can you do it for one meal? One day? Three days? The whole week?
No seasoning, no spices, no other ingredients at all.
John doesn't have the choice. He doesn't get to quit, or take a break, and if he cheats he get's very, very sick, and will likely pay for that cheat for days, weeks, or months.
I'm asking you to spend some time in his shoes.
There are lots of kids out there who have even less safe foods. I'm not even asking that you drink his formula, which he has to do to get enough calories and nutrients each day. He has to drink around 30 ounces of Elecare Jr every day and believe me, I've tried it, it doesn't taste that great and it leaves a funny feeling in your throat. I could manage to drink a little of it but I can't imagine having to drink that much of it every single day.
It must get boring to only be able to eat and drink these certain foods day in and day out. All day every day. I'm having a hard time imagining limiting myself to these foods for a week!!
I bet that even if you challenged yourself to only eat YOUR FAVORITE five foods, you wouldn't last long.
Limiting yourself to a restricted diet is extremely hard.
When you feel like you cant do it be thankful that you have a choice.
So, will you join us?
Monday, April 22, 2013
So we just moved!
We outgrew our old house (Okay, I really just HATED that old house) and our lease had been month to month for like two years so we decided that this year's bonus money would be spent on moving into a bigger, newer, more open, single story home.
We found the home of our dreams!!
I seriously love this house.
John does too.
John and I both love that he know has access to his bedroom. I like it because I can keep all his toys out of the living room and he just likes having the freedom to move about the house on his own.
We're pretty stinkin' happy. It's been an AWESOME month.
Food trials are also moving along nicely.
We started chicken which, just like last time, didn't go so well. We trialed chicken before turkey and decided to stop due to increased reflux, behavioral problems, and him just not liking it in general. We blamed the first two on the stress of introducing a new food and the texture and decided we'd try again later. Since we now have turkey as a safe food we decided to try again, and got the same results only worse. John was not napping, waking up in the middle of the night, super clingly, and acting like everything was uncomfortable. He was refluxing so badly that he would nearly throw up and had almost non-stop hiccups. I wasn't going to put him though this for 10 days when we have so many other options for trials that might go a lot better so we are pushing chicken back again.
On to PEACHES!
At first I thought peaches was going to be a battle. He didn't seem to like them at all. They were pretty tart. I remembered adding sugar to the sweet potatoes to get him to try those and it worked! He LOVES them!!
He is doing so well with them and eating (asking for!!!) so much of them that we've decided to move on after five days instead of ten.
Today we started white rice.
This one is a little tricker. You see, all the rice cereals that you can buy in the store have weird ingredients in them or stuff other than just rice. Soy lecithin, sunflower starch, MILK (?!?!)... I had to figure out how to make my own. At first I thought I'd just steam some rice like I would for myself and then throw that into my Blendtec. I started to do some research and came up with this blog, Barefoot Mamma on how to make your own rice cereal. Super simple! PLUS I got to use my fancy Blendtec blender!!
I threw half a cup of long grain rice into the blender
I started using the Ice Crush/Milkshake setting but quickly realized that just turning the speed up to 8 or 9 for a minute or two was what I needed.
When it's blended enough you'll have this nice white powder.
Boil about two cups of water (I should have used less) and throw that powder into the water. Turn down the heat and stir until the water is absorbed and it starts to thicken up.
When you're done it should look something like this...
I even went a head and made another batch into the powder so I have one bowl already cooked up and another bowl ready to be cooked.
You can keep it cooked in the refrigerator for up to three days.
I mixed a little in with John's green beans and he ate it up. I'll also be mixing it in with nearly all his other foods too! I really hope this food is safe because it opens up SO many options for substitutions!
Thanks for reading!
Tuesday, April 9, 2013
John has really been enjoying his new foods. Prunes are his favorite followed closely by green beans.
|after an early morning self feeding of prunes|
We've been trialing sweet potatoes, green beans, turkey, and prunes for 5-10 days each and it's time to have a scope. The more foods that are added between scopes the more confusing it becomes if the results come back with high numbers. Some scope between every food, some trial 2-5 foods in between scopes. We are going with four right now since John needs 8 safe foods to go to Marcus.
Dr. L. does scopes on Monday which is nice for us because we can spend the night before in Atlanta with out Doug having to take off another day of work.
So we decided to head to Atlanta on Saturday and spend the weekend there having some fun.
We went to the zoo on Sunday.
And played in the photo booth.
We ate some great food and played in the yard with the puppies at Aunt Jeannette's house.
|our breakfast (biscuits not pictured)|
I have no idea what he is doing in this picture above but he was all over the yard just loving the nice warm weather and room to explore.
|He loves his Abigator (Abigail)|
We made some memories and enjoyed ourselves thoroughly.
Monday morning came quickly and we had to get up at 5:30. Even being in Atlanta we still had to leave the house an hour early to get to the hospital on time. John, being so young, was the first scope of the morning at 7:30am. We arrived at 7:00 with a sleepy and hungry little boy.
When they took him back he was so brave. He didn't cry or anything. They said he went to sleep very easily and quickly. The scope went well and visuals were good. All very good things to hear.
It never get's easier letting him go back there and sitting in the waiting room. He was only gone for about 15 minutes but it's a long, and stressful 15 minutes.
He woke up great and only cried when the nurse pulled the tape off his IV to remove it. He's such a trooper.
We went back to Aunt Jeannette's house to rest for a little while and pack our stuff to head home.
John was pretty groggy but happy.
|getting some breakfast after the scope|
|*yawn* still sleepy.|
We expected the results later this week but John was running a low grade fever this morning so I called the GI office to let them know. When Dr. L's nurse called me back she said she had some good news...
John's biopsy results were back already!!!
She hadn't even told Dr. L yet!
This is better than we hoped for and the best it could ever possibly be!
John is in remission and this is his first clear scope with food!!
Now, it's time to start more food trials! We will scope again in two months with four more foods.
Since we are in the middle of moving I may not start the next trial until we get moved but I've not decided yet.
We are obviously over the moon excited!! We no officially have FOUR safe foods and are well on our way to EIGHT!
Thanks for reading!!
Monday, April 1, 2013
I hope everyone had a great Easter weekend! I know we did!
The holidays are always a bit tricky for us since they are ALL centered around FOOD!
(Why is that??)
So, we just have to get creative.
There are lots of ideas on Pinterest for food free Easter baskets if you aren't feeling too creative.
I want to share what we did for John this year.
|look at those adorable peeps!!|
My cousin has a friend who makes these ADORABLE felt foods. You can check her out here :
As soon as I saw her Easter goodies, I knew I had to have some for John's Easter basket.
|some Easter cookies|
I loved the idea of John getting to have some traditional Easter goodies in a safe way.
What Easter basket is complete with out a chocolate bunny??
|he even comes with his own "white chocolate carrot"|
We also had books, a mini slinky, some neat triangle crayons, and a monster truck in his basket.
|yes, that is Darth Vader with bunny ears :)|
|checking out his chocolate bunny|
|We even got some custom "Cars 2" Easter eggs.|
|"issa Easter monnnster trrruuuck"|
|trying to figure out the "swinky"|
Once you start thinking outside the traditional box you'll find there are LOTS of fun things you can put in an Easter basket and hide inside plastic eggs that have nothing to do with food.
Thanks for reading and we hope you all had a fun and SAFE holiday weekend!
Tuesday, March 26, 2013
Spring must be our time of the year for amazing things happening!
I believe we are well on our way to having FOUR safe foods!!
It's really too early to tell but John did so well in therapy today that I cannot help but be excited.
Let me start from where I left off last time I updated.
John has been doing SO WELL with the green bean trial, eating a WHOLE JAR every day and showing no signs or symptoms of having any reactions to them. Because of this, and his scope coming up on the 8th, I decided to go ahead with another food a little early (4 days to be exact) just to make sure that it counts on this scope. I chose plums because we don't have any fruits yet, they are smooth, sweet, a different color from what he has and quite honestly because I'm worried that the turkey might be constipating John. Sorry for the TMI. I want a natural alternative to handling his irregularity. I don't care for Miralax or Lactulose.
As well as John did with green beans for the first time, John did even better with prunes!
Let me side track for a second... Yes, I just said we were going to trial plums, then I said he did well with prunes. For those of you who don't know prunes are dried plums.
I tried making some plum baby food last night, because it's practically impossible to find already made in single ingredients, but that didn't work out so well. It was very runny and could be slurped up in a straw easily. Not so good for my orally defensive child. So I bought Earth's Best prunes.
John ate an entire 2oz jar no problem!!
Not only that, but Ms. C actually managed to get him to eat a few bites of watered down turkey. That's turkey alone... not mixed with green beans or sweet potatoes!
In other, somewhat related news, we are moving!
We found a new rental house in South Carolina. It's less than half an hour from this house so nothing will change except our address. :) John will still see all the same doctors, Doug will still be working at the same place, our insurance and everything will stay the same.
It's going to be hectic and crazy and I really hope it doesn't effect John's progress but we shall see and handle each thing has it comes.
I can hardly wait for his scope in two weeks so we will be able to officially say that John has
FOUR SAFE FOODS!!
We are so very excited.
Thanks for reading!
Wednesday, March 20, 2013
Yesterday we started the green bean trial. John has to eat at least 3 bites of green beans every day for the next 10 days while also continuing to get at least 3 bites of turkey.
He has to have both of these foods in his system when they take biopsies on April 8th. It seems like it will start to get harder the more foods we trial in between scopes.
Not only because the results could potentially be confusing but making sure he eats enough of each food every day gets harder the more we add.
I was ready for another battle with the green beans but decided to see what he would do with green beans alone and not mix them with anything the first time. I figured that they would have a similar texture to sweet potatoes and he would only have to get passed the new flavor. Unlike the turkey where he is having to over come the texture and the new flavor.
John blew me away. He willingly ate three bites yesterday and four today! He would have kept going today but I wanted to make sure he got plenty of turkey too so I gave him four bites and then mixed his sweet potatoes and turkey in with the bite or two that was left of the green beans in the bowl.
He ate it all!
I was dancing around and cheering and lots of high fives were given!
8 more days with no symptoms and we will only need the scope to confirm that we can add green beans and turkey to our list of safe foods!!!
I am waiting for an available appointment with a dietitian to help me make sure that while we are trialing food that John continues to get the correct amount of calories every day. With his tummy being full of trialing foods he cuts back a lot on formula. We need to make sure that we keep a good balance.
All in all things are looking really good!
Thanks for reading!!
Wednesday, March 13, 2013
John has been trialing turkey for about two weeks now.
It started off well but then turned south. He wouldn't touch it alone and I started having a rough time getting him to eat it mixed in with the potatoes when I put the whole amount he needed each day into a jar of potatoes. I pulled back to only putting one spoonful of turkey in with a whole jar of sweet potatoes and after some hard work and a few tears I got him eating about half of that.
I was getting very discouraged. He was only getting about 1/4 of what he needed each day to count as a trial and it was a battle that left us both exhausted emotionally and physically.
I was about ready to give up and try another food.
I was hating having to force feed my child a food he obviously didn't enjoy one bit just to find out if it was even safe for him to eat it!!
I decided that we would just stick it out for a few more days, remembering how long it took him to start eating the sweet potatoes willingly (nearly two months!!!).
Then it happened. It's like we had to get over a hump or something.
Yesterday and today John ate an entire jar of sweet potatoes that each had half a jar of turkey in them during occupational therapy!! I swear his OT, Miss. C, is a miracle worker!
My hope is that over the next few days we will be able to transition him to eating the turkey alone.
If this continues to go well then next week we will add....
We are getting ahead of ourselves and imagining all the holiday meals John will enjoy with this combo of turkey, green beans, and sweet potatoes!
Fruits seem to be problematic. Apples and Bananas have been a no go so far. I suppose we will eventually have to trial another fruit but for now I'm okay with sticking with veggies, especially if we get turkey on board.
I am still waiting on a call back for an evaluation with a local speech therapist that uses the same feeding therapy methods as the Marcus Autism Center to help us get more foods on board but I think we are doing pretty good with our Miss. C at Ducktails. We love her.
We are making some steady and amazing progress and I feel really hopeful about the future.