Wednesday, March 28, 2012

Appointment With Dr. Williams...

We saw Dr. Williams today for a routine GI check up, I was ever so thankful we had this appointment scheduled so long ago since Nathan has been having problems for the last two weeks. Ever since trialling eggs March 10 - March 20, Nathan has been coughing and gagging all night long and has lost his interest in food. Some days are good with his eating and some days not so much. A good day would consist of eating a pear or banana a few raisins, and 4-5 bites of chicken throughout the entire day plus drinking 15-20 ounces of his EleCare. A not so good day would consist of Nathan drinking 24 ounces of EleCare (which is only 50% of his daily calorie requirement), but picking at or flat out refusing any food presented to him.

So the plan right now is to switch nasal sprays (he's been on Nasonex since October 2011) and see if that helps. Dr. Williams is hoping that part of the problem is environmental allergies since they are so bad this time of year. He was supposed to contact Dr. Irani, Nathan's allergist to collaborate with her about which nasal spray to switch him to. I am hoping I get a call tomorrow that the decision has been made and I can go pick up his new Rx from the pharmacy.

We will then give it two weeks to see if Nathan's symptoms clear completely or greatly improve, if so we will continue on like we have been doing and move on to our next food trial, if not we will schedule a scope immediately and they will take a look and see what his esophagus looks like and do more biopsies. If we end up doing the scope and the biopsies come back with eosinophil counts I'm not sure what we'll do (well, I am, but I don't want to think about it... Nathan will be losing foods and it's not going to be easy on any of us). He's already so tired of eating the same foods day in and day out and so sad when he sees us or someone eating something that he can't have. I don't blame him, but how do you explain this to a two year old? We try, but he just doesn't understand right now. 

I'll be sure to post an update once we know more... we are praying for good news! Thanks to everyone who continues to pray for Nathan and our family! 

Sunday, March 18, 2012

What a Year it's Been...

So, I've been a terrible blogger since my post back in November. In fact, I've not been a blogger at all. The Thanksgiving, Christmas, & New Year holidays were wonderful to us! Blogging was an extremely therapeutic outlet for me in the beginning of Nathan's diagnosis and I guess it still could be if I would just do it, but my hands stumbled upon quilting and sewing last fall and they haven't stopped since they started. It's my new therapy and escape from dealing with all things food and EoE.

Another reason for the lack of posts unfortunately, is the fact that Nathan has been doing so well! I am ashamed for not sharing good news with all my readers. We tried a few foods since my last post and some worked and some haven't. Wheat was Nathan's first fail and it devastated me. But I quickly remembered how blessed we were for going so long without a fail. Eggs are being trialled right now (we're on day 8) and there has been coughing and sneezing and a bit of a runny nose... typical fail signs, but we will continue on and see what happens. Has hasn't started refusing to eat them yet, so that's a positive sign. These days this lucky little guy is able to eat: chicken, pork, beef, apples, pears, green beans, carrots, raisins, potatoes, rice, marshmallows, and a variety of Enjoy Life cookies. We are beyond blessed for this! I know way too many other children out there with this that have fail, after fail, after fail, and have zero safe foods after months and years of trying to find one. My heart breaks for each of them. Nathan still has his feeding tube, but we only use it occasionally. He drinks 24 ounces of EleCare a day to supplement his nutrition. Typically he does great and gets it all in on his own, but there have been a few weeks he has not felt well due to a food or an illness and he looses interest in eating and drinking. So we increase the number of ounces of EleCare during those times and hook him up to his feeding pump while he sleeps to keep his calories consistent. We are so thankful for the peace of mind his tube give us when he doesn't feel like eating. 

I can't believe it's been almost ONE year since we got that phone call from Dr. Williams on Friday, March 24, 2011, at 1:30pm. Yes, I still remember the exact time of that life changing phone call. It has certainly been a year of ups and downs full of unexpected twists and turns. But it has been wonderful all at the same time thanks to the many friends we have made along the way from around the country! We have become especially close to a family in Arizona and now consider them quite literally "family"!

Nathan and I flew out to meet our new found "family" and visit with their precious Tyler (Nathan's EoE buddy) and their five other kids the first week in February this year! It was as if we were visiting with old friends, we had an amazing time with them! We are so gracious for their love and support for our family. They have made the last 12 months so much easier for us than they would have been without them! It makes all the difference in the world to be able to talk to someone else who walks in the same shoes you do.

The two sweetest boys ever!
Bath time buddies.
(EleCare) Drinking buddies.
Hiking buddies.

Most days are good days for us all, Nathan has a hard time understanding why he can't eat things that we or other "normal" people eat from time-to-time. It's hurts me terribly to tell him no. But typically I am armed with safe foods for him to try and divert his attention. Last week Nathan's daycare had a class party for St. Patrick's Day. I thought it would have been done and over with before we arrived that afternoon, but it was just beginning as we got there. It was the first time I wasn't prepared with food for Nathan and it was terrible! All of his classmates greeted him by running up to him and telling them about all the green cookies and cupcakes. It took all I had not to grab him and run out of there and head back home. The two year olds in his class meant no harm, and Nathan didn't seem phased, but it made me realize that as this does get easier to get used to living with, it still has a horrible way of sneaking up on me at times and it makes me want to scream! I despise the fact that life revolves around food. I was in a funk the remainder of the evening at work because of how terrible I felt for not having a fun food for Nathan at his class party. I felt like I let Nathan down, and it was a rotten feeling. A radiologist I work with came into the department that night upset over how he and his wife just discovered that their three year old had a skin reaction to peanuts.  He was devastated at how they had to rearrange their grocery shopping and all the snack foods that they have in their house. He went on and on about how it's just not fair for a three year old to be on such a restricted diet by avoiding peanuts. I just sat there in silence and actually had to get up and leave the department. Honestly, I do feel terrible for them and I know it stinks. Food allergies are inconvenient and worse, terrifying if they are life threatening. But that wasn't the night for my sympathy. Typically, I would have handled the situation much better and it wouldn't have gotten to me like it did, but it was just one of my not so good days I guess. Thankfully I don't have many of them like that.

Below are some more photos to catch you up on the last few months. Enjoy!
Nathan's first snow (that he was old enough to play in)!
We kept him up past his bedtime to play in it!

Nathan holding his new best friend, Sterling.

Nathan and his Mini Buddy, BearBear! He has a
feeding tube in his tummy just like Nathan!

Nathan clapping after we sang "Happy Birthday!"

Nathan's dairy free, wheat free,
soy free, egg free birthday cake!

Nathan's birthday airplane! He had a blast flying it!

Taking a break from flying!


Feeding the goats at Maymont.

Such a big boy!

Brushing his teeth and being silly!