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.

read that story here!

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!! 

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. 

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.

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.

"warming up" with shaving cream before feeding therapy.

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.

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.

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.

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.

National Eosinophil Awareness Week and Eat Like Me Challenge

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?

MOVING right along!

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!

Up next...

WHITE POTATO!!

Thanks for reading!

Scope #5

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.

John's breakfast

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!

ZERO EOSINOPHILS!!!

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.

White potato

Rice

Peaches

Chicken

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!!