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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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Saturday, July 19, 2014

Got Peaches?



It's been almost a week since we started the "zuspinoa" trial, and so far, we have not noticed any symptoms to make us question if these three new foods are causing any problems. I plan to call John's GI doctor on Monday to schedule a scope, which will probably be 2-4 weeks out. That will give us plenty of time to ensure that his body is aware of the new food on board and for his immune system to attack it if it's going to.
John is still willingly taking at least five bites a day, but it's becoming clear that this isn't, and probably won't be, one of his favorite foods. That's okay though because just having quinoa as a safe foods brings a lot of opportunities for some variety in John's diet. 


Speaking of favorite foods, John is eating so many jars of peaches a day that we are having trouble keeping them stocked up in our pantry. He's eating 5-10 jars a day! We are having to rotate which grocery stores we go to because we buy every single jar they have, every other day. We go to two different Krogers, two different Bi-Lo's, two different Publix, and sometimes two different Wal-Marts. Most of the time we can't get more than 10-12 jars at a time. Sometimes we can only find 2-6 jars.
There have been days when I've had to go to multiple stores in one day just to scrape together 6 jars, hence the rotation of stores. We have to give them time to restock the shelves before we wipe them out again.
I totally hit the jackpot at Kroger yesterday though, and came home with 29 jars of peaches. 


I feel so silly sometimes, checking out with that many jars of peaches, especially when that's all I'm buying, but it's usually a great time to spread some awareness with the cashier and the other customers in line with me. I also feel guilty buying up, what feels like, the entire stock of Beechnut peaches in the city every week. Then I remind myself that not many kids are limited by brand like mine is. 

Hopefully this baby food stage is coming to an end for us. Feeding therapy is going great and John's making some very big strides towards eating age appropriate textures. I really think going to school and seeing other kids eating will help a lot, even if it's going to make fitting in feeding therapy difficult. 




Thursday, July 10, 2014

Zuspinoa!



Zuspinoa. Yes I made up that word. It's pronounced "Zoo-spin-wah"
It's a made up word for the new food John is trialing!! YES! We are trialing again and three foods at once this time!
Zucchini, Spinach, Quinoa. 
We stopped trialing food so that John could focus on feeding therapy without the added stress of trying new foods. Trials were becoming stressful because we had exhausted Beech Nut's stage two baby foods and all the stage three had combos with ingredients that we knew or suspected to be unsafe for John. Making my own baby food wasn't working out so well sensory wise for John either.
I had been casually checking out the baby food aisle to see if they'd come up with anything new we could try and then one day, there it was.
"Zuspinoa"



So far the trial has been going better than I thought it would. We started on Monday with five bites and I was worried he would totally refuse to try but he was very willing! He said "I like it!" after the first bite and willingly ate four more. The next day he had about 5 bites and asked to be all done, but on Wednesday he ate half a jar! Today five bites was a big deal and I think that was because we had just gotten home from a very intense feeding therapy session. So far we've not had any new symptoms!
He has been coughing a lot after eating which is a concern but he was doing that before we started the trial so we aren't attributing it to the new food.
His feeding therapist wants another swallow study done to see if he isn't having some problems there that might be causing some food to go down the wrong way and make him cough like that.

John now has feeding/speech, occupational, and physical therapy at one place. He goes for two hours twice a week. He's improving in all three areas with feeding being the most progress!


In other news, John is going to start 3K in the fall! He's going to be going full time with an extensive IEP. I was really really hesitant and worried about sending him to school but after meeting with the school board after his evaluation and seeing the IEP they made up for him I feel a lot more comfortable. Now to decide that I am going to do with all that free time.


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.