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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Monday, February 3, 2014

Shifting Focus

taken by the talented Ross Goodman Photography
To start off, John had his sixth endoscopy on Monday, January 27th. He was so brave when it was time for him to leave us and go back with the anesthesiologist. I'm so thankful that they do not do endoscopies in the hospital here and the clinic is small so that John is never very far away from us. The staff is sweet and patient. Like I said, the anesthesiologist takes John back herself every time instead of a different nurse coming to get him every time. After being gone for about 20 minutes, Dr. L came out and told us that John's esophagus looked really good and sat down in the waiting room to talk to us about next steps. He sat there and talked to us until John was awake and ready to see us. 

John waiting to see Dr. L before his sixth scope.

We were scoping for peaches and grape seed oil this time. We had originally planned to scope between every 4 foods to cut down on the frequency in which we put John under sedation. We were not anticipating the difficulties we would have in determining which reactions were EoE and which ones were due to John making himself sick because he didn't like the change. We don't want to expose John to an offending food for long periods of time if he's having any sort of negative reaction. Obviously if it's just a sensory issue causing the reaction we can deal with that, but if it's an EoE reaction that would require removing the food. It's all extremely frustrating and why it's been nearly a year since we've scoped and only have TWO foods.
After a year it was time to scope again with whatever foods we had, even if it was only two. There was always the possibility that John was rejecting the other trials because the peaches were making him sick. We had to know what was going on in his esophagus before we moved forward.

Dr. L's office called me a few days ago to let me know that John's biopsy came back 100% normal! 
That means ZERO eosinophils! 
That means that peaches and grape seed oil is SAFE!
That means we have SIX SAFE FOODS!

Which brings me to the plan that we've decided on with Dr. L as far as moving forward: We have decided that with these six foods, John can have a pretty normal life. While we've been trying to focus on feeding therapy while doing food trials there was always the concern that John couldn't tolerate age appropriate textures due to restrictions in his throat from all the foods we had been trialing over the last year. Now that we know that there is no swelling or irritation from an EoE flare, we can confidently say that his avoidance of textures is a sensory issue and/or a learned behavior. Now that we know this, we have chosen to stop food trials and focus on feeding therapy. We are not going to introduce any new foods that could cause a flare and always causes stress. It's time to buckle down, dig in, and get John to where he can comfortably eat the foods we know are safe. Getting John to eat something other than baby food would mean easier food trials in the future, more calories, and a more normal life for all of us. 

We've come to a point where we feel like focusing on feeding therapy and John eating these six safe foods is more important than adding more foods to his list of safe foods. It was a hard decision to make and it's something we've been talking about for close to a year.
We have an amazing feeding therapist on board who knows what our goals are and is working really hard with John, here in our home, to reach them.

I am so very proud of my little man. He is so brave and always unbelievably happy. No matter what life throws at him he just keeps on smiling. He makes me laugh until my sides hurt and amazes me every single day. I cannot imagine my life without him or imagine him being any different. I'm thankful for him each and every day and wonder what I ever did to deserve him. I hope one day he knows how much he is loved and admired by me, the one lucky enough to be his Mommy.

Monday, December 16, 2013

Guess Who's Three?!

Yesterday was a big day at the Hemme Haven.
On December 15, 2010 at 1:53 am John made a very dramatic entrance into the world.

Birthdays, just like the other major holidays, are a bit tricky for us since they are traditionally centered around food. We have to be creative to make it as special as possible in  food free ways.

 I admit, we go a little overboard on presents to compensate but our plan is to make lots of great memories too. This year our plans got canceled due to the weather but we had fun anyway.

We spent the day watching Disney's Planes (twice!) and sitting in the floor seeing how many different track designs we could come up with using John's new Thomas Train set.

John got to face time with his Auntie Em, Cousin B and E, and then Grandma B. Grandma H and Great Grandma called to tell him Happy Birthday and then he spent about two hours lighting and blowing out the candles on his Leap Frog birthday cake.

 He was having such a good time that he only took an hour nap which for him, is about 3 hours short!

In other news, I've still been unable to successfully buy an avocado that wasn't brown and grey on the inside so we've put off that trial yet again. John's caloric intake is low by about 200-400 calories. He's lacking fats too so we've decided to trial....
....drum roll please....

Yep. Grapeseed Oil. 
We are adding 2 teaspoons to every 6 ounces of formula and drizzling about a teaspoon or so into each jar of food John eats. The goal is at least two tablespoons a day. One tablespoon is 120 calories!!
Grapeseed oil is an excellent source of good fats and antioxidants.
We are trying to get a scope scheduled for next month since we are coming up on a year since we scoped last. Food trials have not been going well. We've only been able to add peaches since our last scope and so far grapeseed oil seems to be going well.  

Feeding therapy is going really well even though we are starting with a new therapist again. Ms. C was really good and we hate to see her go but she had other obligations. Ms. J comes to our house which is fantastic. No more having to lug bottles and spoons and jars and bowls and formula to and from therapy every week and end up forgetting something. Now everything John could possibly need during therapy is right there and I know it's all clean and safe for him too. I feel like Ms. J is going to be a good match for us and I'm excited about working with her. 

I have big hopes for next year. Lots to look forward to. I won't be blogging again until after John's next scope sometime in January or February. It's time to enjoy the holidays and my family. I hope you all have a Merry Christmas and a Happy New Year! 
Thank you for reading and sharing!! 

Tuesday, November 19, 2013

Avocados and Flat Feet

Last time I wrote, we had pulled all new foods and John was asking for carrots all the time.
Since then, we've decided that it was the carrots making John throw up and pulled them for what I think is the third time. Thankfully he hasn't asked for them either, so I think on some level he knew they were making him sick. I cannot imagine John asking for a food and me having to tell him he can't have it. So far that's not happened, but I know it's inevitable.
I can't believe he's almost three!!
We are still going with peaches, and so far, no symptoms that we think are caused by the peaches. They are still not on our "safe" list though, since we haven't had a clear scope with them yet.
Right now we are still trying to decide if we want to scope with just peaches or try to find another few foods that he will enjoy eating. 
What's the point in having a safe food that he refuses to eat? 
For example: Turkey. It's safe for John, but he won't have anything to do with it. So what good is it doing him or us to know that it's safe?
We've officially trialled all of Beech Nut brand's baby food that we can find in the grocery store, so now we are going to have to start getting creative, or John's going to have to make that leap into eating finger foods and age appropriate textures.

John seems to be more interested in eating things. When we went to the store last week, I handed him an avocado and told him what it was. He took it, looked at it, told me what it was, then proceeded to put it in his mouth!! My first instinct was to stop him, but I stopped myself and just watched him to see what he would do. Right when his teeth touched the avocado, he stopped and handed it back to me, but WOW! He's never, EVER done anything like that before! Then, later at the store, I handed him a bag of dried peaches and he stuck the corner of the bag in his mouth!! 
He's been feeding himself with his spoon for a week now, and drinking out of a straw. He's blowing me away! I'm so excited for him and these huge steps he's taking. He's being very brave tackling this oral aversion.

In other news, John's physical therapist decided that John would benefit from small leg braces called SMO's (Supra-Malleolar Orthosis) They are for people with flat feet. John inherited his Dad's extremely flat feet. He also has low tone in his legs and these braces will help support his ankles and promote proper form while he develops those muscles. 

We picked up the braces today and for the first few minutes after putting them on John walked around like a robot with very stiff legs but after a few mins he was walking around like they weren't even on. 
He's worn them most of today and has done well with them. He even jumped on the trampoline at therapy today, which is something he normally will not do. The braces fit into his Chucks so we didn't even need the special shoes that they originally told us we'd need. I was very happy about that. John loves his Chucks and so do I! They've become his thing, like his Uncle, and that makes me happy. 

Thursday, October 10, 2013

Getting Back on Track

We've been having a pretty rough time here lately with food trials.
We pulled carrots, squash, koolaid, and dumdums, along with adding a second dose of steroid, all to try to combat the flare.
It took a while for John to stop throwing up and we were getting concerned that we were going to have to pull peaches and/or green beans (all he's been wanting to eat lately). 
Now that things have calmed down Doug and I are looking into what our options are for trials from this point forward. We've exhausted Beech Nut's foods which is pretty much all the foods that can be pureed smoothly. At this point we're going to have to start looking for foods that I can make and John can either eat alone or can be added to one of his safe foods. 
He asked for carrots today and ate an entire jar. So far he's kept it down so I guess we are trialing carrots again. The whole time he was eating them he was saying "yuuuuummmy carrots!"
I guess he's decided he likes them after all.

At Steed's Dairy Farm

John is working really hard in speech/feeding therapy to get past his aversion to textures. This is a big step we need to make in order to proceed with food trials. 
John's feeding therapist is a miracle worker. She's made more progress in two weeks than all of John's therapists in the past have done in a year. We are very hopeful that John will make some amazing progress with her. I only wish we'd found her before now.
It's getting to be more crucial as well since John has decided he'd rather eat food than drink his formula. It's a bittersweet thing that he's making this transition now because he physically can't eat enough of his four safe foods in pureed form to sustain him without continuing to drink the formula. He needs this formula to continue to thrive and gain weight. 
So, once again, we are at a point where John has to make significant strides in therapy and start eating age appropriate textures in order to make up for the formula he's not drinking now. 

working with shaving cream to "warm up" before feeding

John has also been doing well in physical therapy. His therapist says that John has very low tone in his legs and she's worried about the strength in his ankles. Because of these things she thinks it would be best for John to start wearing braces. They are very small and no one will even know he's wearing them because they go down inside his shoes. These braces will just give him a little extra support while he works on building his strength in therapy. 

So our main goals right now are his therapies. We will focus a little bit less on trials so that John doesn't get too overwhelmed. Food trials are stressful on his body and all of our emotions. Therapies are the same way. he has a hard time handling both at the same time. Since John is seeming to be more interested in eating real food right now we are going to push more in getting him to eat these foods in age appropriate textures and less on getting him to try new foods in pureed forms. 
Needless to say, food trials will go MUCH easier when he's eating finger foods.

Wednesday, September 18, 2013

in the loop

Just a quick update to keep everyone in the loop.

We were supposed to scope Monday for chicken, peaches, carrots, and squash but John started to throw up a lot. I thought it was just a bug or maybe sinus drainage making him throw up but he never had a fever and only threw up after eating squash.
We had also introduced some new things that are supposed to be safe for kids on an elemental diet like grape koolaid and dumdums (again).
I talked to Dr. L and he agreed that it sounded like John as having a reaction to something.
Since we added the koolaid, the suckers and the squash all around the same time it's hard to tell which one is causing the vomiting. 
Either way we've stopped all of them and Dr. L agreed that since he's having these symptoms he is more than likely having a flare and putting him under sedation to do a scope would be pointless.
We will schedule a scope for a month out from when John stops having vomiting episodes.
We decided to up John's steroid to twice a day since we've been having such a hard time finding four more foods. We are down to three foods for this scope and plan to keep it that way. 

John started feeding therapy with a new therapist that specializes in feeding (FINALLY!) and he's doing so well! He is also working with a new physical therapist that he LOVES!
We are all adjusting well to the new house and new routine. 
I started taking a sign language class and am teaching John and Doug and John is picking up on it so quickly.
It's adorable watching him try to fingerspell his name.
He makes me so proud and so often I find myself looking at him and unable to believe that he's really mine.

Monday, August 26, 2013

Try to Imagine

Try to imagine...

Imagine that the one thing that's supposed to sustain your child, nourish your child, keep your child alive, is attacking your child, making your child ill, killing your child. 

What would you do?

Imagine now, that the only thing that can your child can safely eat is a hypo-allergenic amino acid based formula that doesn't taste all that great, smells horrid, and has nothing natural in it.
How would you feel?

Less than a day's worth of formula for John. 18oz of water and 2 cups of formula.

Now imagine that the only way to find foods that might not make your child sick is to make him eat it.
Knowing that there is a possibility that it could make him sick. That he could have symptoms of reflux to throwing up, to incredible pain for days. Just from a few bites of a food.

Imagine that you might need to give your child a medication in a way that's not FDA approved just to boost his chances that these foods that you are feeding him won't be rejected by his body.
Would you do it?

What if you were faced with the choice of seeing your child struggle to drink this formula all day every day or having a feeding tube put in?
What would you do?

Imagine if you had to agree to letting doctors put your child under general anesthesia every 3-6 months because there is no other way to know for sure if the foods you've been making your child eat are really safe or not.
How would you handle that?

Imagine if you had to experiment with your child and his health on a daily basis.

Imagine if all of this has caused your child to fear food. To have an aversion so strong to foods that he cannot tolerate the feeling of it in his mouth. To see your child cry and gag every single time you try to get him to eat a solid piece of food.
Imagine that getting your child to eat is a daily struggle for both of you.

Imagine knowing that there is a possibility that your child will never have more than a handful of safe foods for his entire life. Imagine that your child's "safe" foods could become unsafe at any moment and therefore he will have to continue with this routine of trials and scopes for the rest of his life.

Imagine that this is YOUR child, YOUR child's life, YOUR life.

Just try to imagine.

This is my child's life. This is my life. 
Whenever I start to feel depressed or angry I look at my child. He, who has every right to be upset, angry, miserable.
He is HAPPY!

I look at him smiling and laughing all the time! 
He is the happiest, most joy filled child I have ever encountered. 

He amazes me every.single.day.
I think we could all learn something from him.
I know I have.

Thursday, August 22, 2013

Long Overdue Update

What a crazy, whirlwind of a summer we had here at the Hemme Haven. I'm really regretting now not taking the time to keep the blog updated but I also thoroughly enjoyed the experiences and memories we made as a family over the last two months.
Last I updated we were doing a challenge to eat like John for a meal or a day or a week to raise awareness for EoE. I don't know how you all did but Doug and I found it VERY difficult and did not do well. I found out during the process that my body cannot tolerate a lot of turkey. I was miserable with the worst heartburn and reflux that I've ever experienced in my life. I subbed his formula with a protein shake and ate a lot of sweet potato fries and green beans. I only lasted a day and a half of the week I wanted to try for. 

The foods we've trialed since I updated last are white rice, brown rice, white potato, apples (again), carrots, peaches, chicken, and we start peas tomorrow.
White rice and white potato resulted in him refusing to eat them and he also started to act as if he couldn't get comfortable. All day long he was irritable, clingy, and seemed just miserable. He didn't want to be held but he didn't want me to set him down either. He didn't want to sit down but he didn't want to stand or walk around either. He couldn't sleep and everything seemed to frustrate him to no end. He also cut way back on the amount of formula he was drinking in the day.

Apples ended up being worse this time around that last time. We thought he was pretty border line with apples when we trialed them without steroids and with the steroid on board we thought John would have a good chance of passing it this time around but around day two or three of the trial he started throwing up.
Brown rice was by far the worst we've had in a long time. Three minutes after taking the first five bites he was violently vomiting. 
Carrots and chicken are two that he doesn't enjoy and in fact he totally refuses the chicken the same as he does the turkey but we are hoping to get enough into him right before his scope just to see if they are safe before we start pushing them on him too much. Why waste time getting him to like or tolerate a food that may not be safe anyway, right? Carrots he will tolerate somewhat if he's in the mood for them but he's not been acting like himself lately and has a bit more reflux lately so I have a bad feeling that they will not be a passing food but we are going to stick it out and see what the numbers say since they aren't making him vomit or break out in any rashes or anything definitive of a reaction.
Peaches, so far, is the only food trial that's going well and that he LOVES. 
So this upcoming scope in September will be for peaches, carrots, chicken, and (we hope) peas.

 One of the things I focused on a lot this summer was making lots of memories that weren't food oriented so we spend a lot of time outside playing with sidewalk chalk, a water table, and a kiddie swimming pool.

We also took a road trip over the 4th of July holiday to pick up John's cousin Christine who visited last summer. This time she came to stay. We are so happy to say that she has moved in with us and if finishing her last year of highschool here in the states instead of going back to Canada. 

We drove the whole way up to Ontario with a uhaul trailer and made a stop in Niagara Falls on the way back home. He had missed his cousin and was so happy to see her again.

John did really well on the 2,000+ mile trip made in 3 days.

Now that we are all home, unpacked, settled in, enrolled and registered for school and getting somewhat into a routine again things are calming down. It was pretty crazy there for a while. I feel like I've mostly caught everyone up on what we did over the summer and in my next post (I hope to write it up tomorrow) I will go into more about what our next steps are and where John is in his progress with diet, and his therapies.