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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, April 23, 2012

Big Big Week!

This week is jammed full of Dr appointments between John and myself!
Today we had his Physical Therapy (PT) evaluation. It went really well but she is concerned about John's right hip. He seems to not want to put any weight on it. I've not noticed him acting like it hurts and he's never fallen or anything like that so I dont know what's going on there but she wants an xray done on it to see what's going on, if anything, before she starts trying to manipulate it too much. She also said that he is about 11 months developmentally, which his pediatrician already said but it was nice to get a confirmation. She thinks that now that he is getting more nutrition and with therapy he will catch back up fairly quickly.

As soon as we got home from the eval John started walking. 

I kid you not, he just took off!!! Little stinker!
He is still favoring one hip over the other so he will still need the xray and therapy but maybe now he wont need as much therapy or for as long!! 

Tomorrow we are driving to Greenwood for his patch testing. 
EE kids have delayed reactions to foods so they have to have the allergens put on his skin and left there for a while. So they will put a bunch of patches on his back and in a day or two, we will go back to Greenwood for them to remove the patches and evaluate the reaction. That will give us a pretty good list of foods NOT to try first. We will still eventually trial the foods he's had a reaction to, just not until  much later.

On Wednesday we have John's Occupational Therapy (OT) evaluation. I have no idea what they are going to do for this one but they should be taking care of feeding therapy.

I hope that on Thursday we will be going back to Greenwood but I'm not sure yet...

Friday is my own appointment in Columbia. We are going to see a fertility specialist. :) We are ready to have another baby and it's looking like we are going to need a little help.

I'm so proud of my little boy!

So now that John is walking that's one goal down and one to go! 
 Sippy cup or straw by age 2!!

Tuesday, April 17, 2012

Easter and Referrals

Last weekend was Easter. What do you do for a toddler who can't eat food on Easter morning? 
My first thought was "Yay! We have suckers! John can have candy on Easter!"... Nope! Last week's reaction to the corn syrup took those out. So here is what I came up with this year.

A ball, a mini pillow pet, two cars, and there are some plastic eggs but they are empty.
He actually has ended up playing with the basket more than anything else but loves the cars and ball too.
We also got a super play yard for some outside time. Since John isnt walking yet I'm scared to just let him lose in the yard because of all the gum balls, pine cones, and other things on the ground. We've found a snake or two when working out there!

We had fun outside and plan to spend a lot more time out there.

John has been walking a lot more inside with the help of this little scooter that his Great Aunt Marcia gave him for Christmas...
And now I'm working (still) on getting a referral to get him into therapy to work on the walking (sans scooter), drinking with a straw/sippy cup, and working on other areas where he is a little delayed.

John had a reaction to the suckers and the Neocate Splash so we are back on Elecare exclusively.
So much for getting some variety in his diet.
So, that's all for now. I will have some more to update after his allergy test. I hope the patches aren't too uncomfortable for him. He is my little trooper though! I love him so much!

Friday, April 6, 2012


We got our sample of Neocate Splash in the mail yesterday and I was so excited!!

I decided to have John try the grape-raisin first because it sounded the most appealing to me. He is still refusing straws and sippy cups so I had to stab a hole in the box and pour it into a bottle. Let me pause here to say how surprised I was when it came pouring out!! I expected it to look like juice or at least like colored water but no! It looks almost EXACTLY like his "milk". So while I'm putting it into a bottle it doesn't look any different but some day he will be able to drink it right out of the box and he will look like any other ordinary kid with a juice box and for that I'm super excited!!
 He only took about two ounces but seemed to tolerate it okay. At his next feeding I tried the orange-pineapple. John did NOT like this one at all!
This morning I offered the grape again and after a painfully slow (45 min) feeding he finally took about 5 ounces! (they are 8 ounce boxes). This gives me hope that maybe we can switch him over to the "juice" from the "milk" and once we get him into therapy and using a straw we can finally lose the bottles!! No more baby bottles!! That would be heaven!!
 My goal for John now is to be bottle-less by the age of 2!

I'm going to call a place here called "Duck Tails" on Monday. They do occupational, speech, physical, and feeding therapy. I hope that will take John's case and help us out. I've been having trouble getting him in anywhere for months now. Our neighbor recommended this place so I'm hoping that that will give us a foot in the door. We will be needing the feeding therapy once we start re-introducing foods into John's diet.
Time for me to start learning how to make/prepare my own baby food for John too! 
My Aunt gave me this book and I'm super excited about it!

Last night John decided he wanted to brush his own teeth. I didn't get any really good pictures but it was pretty cute.

He seems to be getting over his oral aversion a little bit. I think the dumdum suckers helped a lot with that.
Speaking of the suckers....
on a sad note, John may not be able to have those any more either!!!
In some rare cases, people can be hyper sensitive to corn, meaning that they react to EVERY part of the product, not just the protein. He has reacted to corn starch before even though it was in a "hypoallergenic" product. He may react to the corn syrup too. :( This would be really unfortunate since that would cut down what is safe for him even further, cutting out "hypoallergenic" alternatives as well.
I'm going to call his GI doctor on Monday and see what he thinks about it all. Right now I am FAR more upset about this than he is because for him if it's out of sight it really is out of mind. For now....
I dread the day that he starts to understand and realize all that he can't have.

Wednesday, April 4, 2012

weight check and a little trip down memory lane

Yesterday we had another weight check

18lbs 7oz

7oz in two weeks. Not great, but not bad either. He is growing right along the 2nd percentile.
At this point as long as he's not losing weight, we are happy.

I got a memory stick from my step mom a few weeks ago with pictures that my Dad took while he was here when John was about 2 weeks old. I want to share some of the pictures my Dad got. Most are pretty funny.


 I've really been missing my Dad lately, particularly when we got our awesome news the other day because I know how happy he would have been to hear it. He probably would have been calling me everyday until I had the results for him!

 probably sending Aunti Em a picture

Me wearing John for the first time. I'm glad my Dad was there to take this picture.
I wish John had been able to get to know him better. 

Monday, April 2, 2012

Dumdum Suckers

Dumdum suckers are considered a food group for EoE kids. For a lot of these kids the suckers are the only safe way they will ever experience some flavors. This is John's first time tasting Blueberries :)
I think he likes it!! 

and I may or may not have given him this blue sucker two hours before our scheduled appointment for family portraits.... >.< It was worth it.

EGD day and Biopsy Results!

March 28
5:30pm Doug comes home from work and we load John and the two dogs into the car and head for Greenville, SC. We have to be at the hospital by 7am for John's endoscopy.
9:00pm Check into the hotel and try to get John to go to bed. Doug runs out to get the two of us some Taco Death.
11:00pm Doug and I go to bed.
March 29
2:00am I'm still awake staring at the ceiling
4:00am the dogs start barking at sounds outside our room
6:00am time to start getting ready to go, walk the dogs, shower, pack the diaper bag.
6:30am grab some Starbucks and make our way to the hospital.
7:00am check into the out patient surgery wing
 John in the room. Waiting for them to come get him for his scope.

8:30am The anesthesiologist comes to get John and take him back to do the endoscopy.
8:35am Doug and I pace the waiting room
9:00am We are taken back to see John. He is awake and fussing but calms down as soon as he's in my arms this time.

my sweet boy waking up from anesthesia
9:45am We are back in the car and headed to the hotel to get the dogs and head home!

John did amazing this time compared to last time! He didn't have any problems throwing up, he didn't fight me or push me away. And he was very alert for the rest of the day. Dr. Markowitz came back to talk to us before leaving and said that he would be out of town the next week but that he would take some time to check on John's results and we would get them back by Wednesday or Thursday of the next week.

I just got a phone call!!!

John's biopsy showed.....

That means his disease is currently in remission!! 

We are now waiting on the allergist to call us to set up an appointment to do patch testing. Patch testing will help us narrow down our list of foods that have a high chance of being safe for John to start food trials with. EoE kids have delayed reactions to allergens so the prick test alone isn't enough and we don't want to go into food trials blind. We are so incredibly excited to start re-introducing foods into John's life!!