Glad that's over...

Whew. Eddie and I are both full of relief that all Kaleb's procedures from today are over. Here's a recap of today's events:

We arrived at 7am and waited in the waiting room quite a while. In the meantime, all the other people that came in after us were called back before us. When we finally got back there, they said it was too late to give Kaleb the Versed, which was a medicine to make him calm and relaxed before they did the IV. She said someone from IV therapy was there to do it (because none of the nurses there wanted to do it on someone so small) and she couldn't wait around until the medicine kicked in. So we had to choose - give him the medicine and let someone do the IV that really wasn't comfortable with it to begin with, or let IV therapy do it without the medicine. As hard as it was, we chose the second option. (Let me just say, this mama wasn't happy about all of it...) The IV was the worst part of the whole thing and most upsetting to watch. Once that was all over, it was a big sigh of relief!!

Everything else happened pretty quickly. I didn't know Eddie and I would be staying in the room with them while they performed the endoscopy and colonoscopy, and I almost thought I was going to pass out a few times...(I can't handle anything medical.) The endoscopy showed that Kaleb's esophagus was abnormal. It was swollen so much they couldn't see any blood vessels like you usually can, and it had these imprinted lines down it which further pointed to the Eosinophilic Esophagitis diagnosis (although they can't confirm until biopsy results are back next week.) The colonoscopy was normal, which we were incredibly thankful for!!

I explained to the dr. that we are supposed to leave for vacation next week, but with all the pain Kaleb's having, we weren't sure if we could go at this point. He's hysterical and inconsolable at night time, and that's not good for staying in a condo with other people! She has enough evidence to believe the EE diagnosis is the correct one, so she gave us prescriptions to start treatment right away. When it's confirmed next week, then we'll start talking about dietary changes, like the formula diet. We are praying the medicines take effect soon so that we can still go on vacation!!

Thanks so much for all the texts, calls and prayers for our little boy. We are so glad the testing is behind us and we can move on with treatment. Please keep praying that he feels better soon!

Prelim test results

Today we got a call we were hoping we wouldn't receive. Kaleb's preliminary tests were positive for blood in his stool, meaning there is bleeding happening internally somewhere in his digestive system. The plan had been for an upper endoscopy only on Friday, but now will also consist of a colonoscopy to locate where the bleeding is coming from. 

So tomorrow I'm stuck at home with a baby on a strict clear liquid only diet and forced to pump him full of meds to "clean" his system out. The words I typed this morning should have said "not for the faint of stomach"!

As a positive for today, Kaleb has eaten extremely well and been in a great mood. Thanking God for smiles and laughs tonight!

"Not for the faint of heart..."

"He's lucky he has you. This diagnosis is not for the faint of heart." Those words from Kaleb's pediatrician vibrated loud and clear in my head around 11pm last night when he woke up for the 4th night in a row screaming louder than I've ever heard before. Eddie and I try to do everything we can to console him, but nothing works. We eventually just sit with our child screaming in pain praying for God to take it away. 

This week has been absolutely horrible. Kaleb's symptoms get worse each day and Friday can't come soon enough. It is incredibly heartbreaking to watch your child transform from a happy, sweet baby to just a body wrecked with pain and ravaged by disease. He can barely eat, doesn't sleep, and hurts 24/7. Yesterday I read some stories from older teens and adults and they said the pain is excruciating, they feel like they are having a heart attack, and have a choking feeling all the time because of the swelling in the throat. My poor child, no wonder he cries out so loudly!

Praying for peace. Praying for relief. Praying for strength, rest, patience, wisdom and ultimate healing.

Friday's the day....

Today was our appointment with Kaleb's new G.I. specialist. First, let me recap how we got there. Over the last 2 months, Kaleb has been feeling horrible. He chokes on his food, has horrible reflux, randomly vomits, and screams out in pain all night long.  The last week has almost been unbearable. I thought Saturday night I was going to have to drive the child to the E.R. because he was completely inconsolable. He's also lost almost 2 pounds in a month and has hardly been eating anything. Hence, the referral to the G.I. Specialist.

We met with Dr. Aljabi this morning. She was GREAT! She had an instant connection with Eddie because she is from Costa Rica (and Eddie from Colombia), so they shared that Hispanic heritage. She spoke with us for a while listening to all of Kaleb's symptoms and told us what we had been thinking for a while - all symptoms point to Eosinophilic Esophagitis (EE). She also mentioned that he may have Eosinophilic Gastroenteritis as well (which is in the lower part of the digestive system). Basically they are caused by food allergies. Because he may be eating something he's still allergic to, there's a build up of white blood cells in his esophagus. This build up quickly causes his esophagus to swell, which is why he's having the eating and choking problems.

Unfortunately, the only way to diagnose this is through an endoscopy, which is scheduled for this Friday morning. They will give him heavy sedatives through an IV and do the scope and take biopsies of his esophagus and digestive system. They will send them to pathology and have results back within a week. They are also going to run a panel of allergy tests, but thankfully can take the blood from the IV while he's sedated so they don't have to stick him again.

Dr. Aljabi was explaining the treatment and my heart sank. She stated they wanted to get him to a state of "remission", meaning this would probably be a life long disease. He would first be put on an elemental diet, which is nothing but a special (aka expensive) formula. If that doesn't work to help heal things, they would start steroids and inhalers as well. I sat there wanting to cry. How do you explain to a 1 year old that is used to eating 3 meals a day that he simply can't eat? I was reading several articles about people with this disease and one 14 year-old girl said she's just now to a point where she can eat 3 foods - banana, pears, and sweet potatoes. Is this the kind of life my child is going to have? As if food allergies wasn't enough!

She did state that she and 2 other physicians have a clinic at Deaconess Gateway for patients with this disease. She said if she thought he needed to be referred to some other specialty hospital or program, she would, but as of now she feels the 3 physicians that work together (she, his current allergist, and another pediatric dr.) can handle it. She said they would consult each other for treatment as well as work together with a dietician to adjust his nutritional plan.

I don't know how things are going to play out, but I'm praying Matthew 7:7 -
 "Ask and it shall be given to you; seek and you will find; knock and the door will be opened to you."

I'm trusting that God is going to give the healing to Kaleb that we are all asking for. I know he's capable of it and I'm having the faith he's going to do it. Please join me in praying this bold prayer, as well as for things on Friday to go well. As his mama, I'm a nervous wreck. I would take all of this pain away from him and go through the tests for him if I could. But through all of it, I know God has a plan and will use all of this for HIS glory.

Sick Day Snuggles & More Appointments

Today was Kaleb's 2nd day with his new babysitter. Around 11:30, I got a phone call from her. "Hello?" I said anxiously. (With an allergic kid like mine, you always answer anxiously.) "IFedKalebLunchAndHesThrowingUpEverywhere!!" And yes, it was said just like that...so fast I could barely understand her. She repeated herself and asked all about the food I sent for lunch, wondering if it could be an allergic reaction. I immediately went over, picked up my baby boy, and went to the dr.

This was Kaleb's 3rd day in the last week he has randomly vomited. He hasn't been eating or feeling well the last few days, but I had attributed it to teething. 

At the dr, we learned he has lost yet another pound in the last few weeks. She thinks there is something we are missing, like internal inflammation in his digestive system, which would be causing a lot of his problems. 

He has been referred to a pediatric gastroenterologist and his appointment is next Monday. Most likely, they will want to do a scope to view his digestive system. 

I say all that to ask for continued prayers. Eddie and I are doing all we can for our sweet boy, but it takes a toll after a while on you emotionally and financially, especially when he's not sleeping (so we aren't sleeping). For an example, here's this week's medical expenses:

Today's office co-pay: $25

Prescription to curb nausea: $70

Co-pay on Monday for specialist: $55

We have full faith that God is going to heal our little boy. I don't know why we have to go through all if it, but God says he uses all our trials for His glory. In the meantime, here's the sweet face I get to snuggle with. 

Rice Cakes for the win

I had a few minutes ALONE in Walmart today as I grabbed a few things for work. This is a luxury that only happens about once every 6 months...

While I was there I stumbled on a little gem called rice cakes. I'm sure these have been around for years, but humor me. I've never tried them in my life and thought they looked disgusting. But they were dairy, egg and gluten free, and when you came upon a rare thing, you try it! 

I slathered on some peanut butter and the child went to town. 

He loved it. I'm planning on trying hummus as well as jelly as toppings for a change. I got the lightly salted kind and they are actually pretty good plain! Crazy how much it tastes like popcorn! 

And being the awesome mom I am, I won't brag about how it took him forever to eat it, giving me a chance to cook our dinner! ;)

$2.00 for a bag of these bad boys. This will be a new household staple! 

As hard as it is most days, I am actually enjoying finding new things to eat and branching out. I bought plantains and red potatoes today as well- look for another post next week! :)

Dinner 9.9.13

Dinner tonight for Kaleb was a win. It included the chicken strips I posted the other day along with a new find, Ore Ida Simply wedges in roasted garlic and herbs. (They were so good!) It also included some frozen berries!

We have made an appointment with a dietician next week so hoping that will give us more ideas of different things to eat!

New lifestyle/Grocery finds

It's been 48 hours since Kaleb has given up wheat and gluten. And I can happily say, the child has not had diarrhea once!! We've finally figured out what's been causing his belly problems and are on our way to learning this new lifestyle!

We took a 30 minute road trip yesterday to Kroger in Owensboro. Shopping at a store you aren't familiar with for a diet you know nothing about with a fussy toddler in the cart was no small task. I was so overwhelmed. Kaleb's avoidance list now includes milk, egg and wheat/gluten. We did find some great items that were a little pricy, but thankful we found some things the child can eat! Just wanted to share a few of them. 

For breakfast this morning, Kaleb had Van's flax waffles. They were $3.39 for a box of 6 waffles, but Kaleb loved them! 

Then at dinner, he had new Perdue chicken tenders. He gobbled them up! They were $4.99 a package that has probably 10 tenders in it! And if you can tell in the picture, I totally forgot to pull the coupon off! :-/

We also found a few other things but I'll blog those as I use them to cook!

This journey has definitely helped my once picky palate become more open to trying new foods. (The silver lining in all this!) We are slow learning but I enjoy finding new things to buy and cook for my sweet boy!

Thanks for all the prayers through this journey! I'm looking forward to blogging my adventures in shopping and cooking allergy-free!

Good Thing He's Cute...

Crunch. "Ouch!". That's the sounds that come out of my kitchen at 5am when I'm stumbling to find a bottle in the fridge for Kaleb and step barefoot onto little toddler puffs he's dropped on the kitchen floor.  After the initial pain, I usually laugh to myself as I think about him sitting in his high chair, purposely dropping them onto the floor - if he only knew!

For 3 long years, I dreamed of becoming a mom and having moments like this. Let me just say, they are everything I'd hoped they would be. I loooooovvvveeee seeing his face light up when I pick him up from daycare, and the day he learned to say "mama" has been forever engrained in my memory. But parenthood has also come with an extra set of challenges I never foresaw.

Most everyone knows that around 4 months old, Kaleb was diagnosed with Torticollis - a problem with the muscles in his neck. He had several sessions of physical therapy and countless hours of working with him at home to get him to be able to turn his head both directions. While this has been corrected, he is still later to reach most milestones - rolling over, crawling, walking. He gets there, it just takes him a little longer.

Then around 6-7 months when we started introducing food, we learned he had food allergies. Over the last 4 months, we've had extensive testing and learned he's severely allergic to milk and eggs. (He breaks out and swells up if you hold him after you've touched these things!) His milk allergy is so severe, I had to give up breastfeeding earlier than I had hoped because living a dairy free lifestyle was just too hard for me.

His food allergies have also caused a lot of sleepless nights. Kaleb's poor belly hurts so bad, he would wake up every 20-30 minutes and scream in pain. He cried, I cried... Let me just say, this aspect of parenthood came with a big slice of humble pie. I can't tell you how many times I previously said "my child will never sleep in my bed". Let me tell you what, after about 4 months of NO sleep, you do what you have to do. And if that means sleeping with a child between you and your husband, you'll do it.

So around a year old, we made the switch to alternative milk. We've been through soy, almond, coconut, and now on to rice milk. When comparing to regular milk, the price of a gallon of alternative milk can be up to $10 per gallon. And a toddler goes through about 2 gallons per week!!  Then came even more...after quitting breastfeeding and switching to other milk, *TMI alert*, Kaleb started having diarrhea 10-12 times per day. I'm pretty sure his daycare workers hate me! We are now thinking he may have a wheat/gluten allergy and are going gluten free for a while to see if we can get this under control.

So here's my purchases for tonight. $11 for a SMALL loaf of gluten free bread and a bag of spaghetti noodles. This kid is going to bleed me dry financially!

We're praying this is a solution to all the problems he's still having. Living an allergy-free lifestyle has been a huge shift for me. Cooking dinner is no longer a hamburger helper kind of thing...it's a thoughtfully planned out meal for 3 MEALS A DAY!

Through all this I'm learning patience, praying for strength and trying to completely turn over everything to our great God who's able to heal him from all of this.  I've decided to blog this journey as much as I can for a memory in the future - as we hope one day we'll be able to look back and laugh and say "Man, you were a TOUGH kid - it's a good thing you were cute!" ;)