December Miracles

It was almost 2 years ago (Dec. 23 to be exact!) that a little pink plus sign changed my life. (I was in so much disbelief, I immediately drove to the store to get another test!) After trying to have a baby for almost 3 years, we were finally going to have a child. It was the first time I had ever felt like I had experienced a miracle.

And now, almost 2 years laters, we've experienced another December miracle. Kaleb had his second endoscopy today and things could not have gone more perfect. From the moment we walked in to the waiting room and were instantly called back, to the INCREDIBLE nurses we had today, to the IV that he didn't even move or cry for and was over so quickly, to the word we were longing to hear: remission. Kaleb's EoE is finally in remission, which is incredibly difficult to get to with this disease. We are still waiting for biopsy results to confirm, but his Dr. was confident.

While we were hoping to be able to discontinue use of the steroid treatment he's on, that's not an option for now. We were able to decrease it to once a day, but the Dr. said it plays a key part in his remission. However, we have learned that the medicine he's on is a topical steroid and doesn't stay in his system long, meaning it's a much safer type of steroid. She did want to discontinue use of his reflux medicine (which I'm a little nervous about…) because it has been proven to decrease bone density, and since he can't drink dairy, his calcium levels are so low anyway. We were also instructed to give him a calcium supplement daily.

He'll go back to the EoE clinic in 6 months to see his G.I. Dr, allergist, and dietitian. In 10 months, we'll discontinue use of the steroid treatment, and he'll have his next endoscopy in a year, as long as his symptoms don't return sooner. Such exciting news!!

So many people ask "Why don't miracles happen today?" They do. I've seen it. I've been a part of it. I've had a front row seat to 2 different December miracles. All you have to do is pray for it and believe it will happen.

"You may ask me for anything in my name, and I will do it." John 14:14

More Than Just Money

Why I Give To My Local Church

I grew up in the church. From as early as I can remember, those shiny gold offering plates with carpet inside them passed in front of me (followed by the weekly register to write your name!) and became a regular part of my Sunday morning. I saw my grandparents throw their offering envelope into that plate every week. My grandma would often give me a quarter or two to throw in, so I felt like I was a part of it too. As I grew older and started making money of my own, I occasionally threw my five bucks in, really feeling like I was doing something. We eventually switched to a church a little more modern where those gold plates were replaced by white buckets, and those weeks I threw a $20 bill in I felt pretty good about myself. I made sure to write my name on that envelope in big letters so there was no mistake it was mine.

I later joined the staff at my local church and heard the call to tithe and what that meant during a series on finances. Woah, they want 10%?? Are they crazy? If they knew how many bills I paid every month, they wouldn't dare expect 10%. So I continued throwing my $20 in, feeling like a good little Christian.

Then things changed. Life got messy and incredibly difficult. And the church was there.

When my husband and I were going through the hardest years of our marriage, the church was there.

When I was battling my 3rd (and most trying) year of infertility trying to have a child, the church and our life group was there.

When my son was experiencing all kinds of medical difficulties, resulting in huge financial struggles, the church was there with prayer and our life group was there with help.

And my thinking shifted. God doesn't just want me to give my tithe every week to keep up with the church building and help pay the staff. In reality, He doesn't need my money. He owns everything anyway. Instead, He wants me to give to the work being done in and outside of the walls of the church building to help change lives and change neighborhoods.

If you know me, you know we pay a huge amount of money every month (think mortgage payment...) to student loans. And we now have medical bills and incredibly expensive food we have to buy for my son that has severe food allergies. Giving 10% to my local church is hard. It really makes us have to budget and look at what we're spending money on. But since we have started tithing, we've never been without. We've never missed a payment, never not had enough food or been unable to pay medical bills. God just keeps providing.

If I can give back even a portion to the church to thank them for being there for me during the hardest years of my life so far, I will. I want to give to the work that the local church continues to do to change lives and be there for people, like it was for me.

Touch, scratch, poke, yuck.

Today was the long anticipated first appointment at the EE Clinic. Kaleb was diagnosed with Eosinophilic Esophagitis (EE) a little over a month ago. (You can read more on previous blogs.) Once a month, 3 specialists come together to treat kids who suffer from this disease. We first met with the allergist (who was different than the one he usually sees), then Dr. Aljabi (G.I. Specialist) and then a dietitian.

Dr McLaughlin (allergist) told us a lot about EE and food allergies and then had a comprehensive skin allergy test done. There were 5 different panels of foods, and Kaleb was not happy at all. They forced him to lie on his stomach for a really long time, and to be honest, was not kid-friendly at all like Dr White's office is. He had reactions to 2 new things, turkey and coconut. Which now brings our list of foods to avoid to:

Milk, egg, wheat, barley, rye, oats, chicken, turkey and coconut.

We then saw Dr Aljabi and Dr McLaughlin together. Dr Aljabi was very impressed with the almost 4 pounds Kaleb has gained!! However, she was really concerned about his skin color, and Dr McLaughlin concurred. This forced us to have lab work for a full CBC.

Lastly, we met with the dietitian, who basically didn't offer any other solutions and told me I was doing a good job of feeding him. I was really looking for different ideas of things to feed him, but she couldn't offer me any. In fact, I taught her several things about where to shop, new products on the market, etc! 

In the end, my main lesson for today was to be my child's advocate. Dr Aljabi wants another endoscopy done in January, but I informed her about how Deaconess told me his last one would be covered at 100% but then I got bills for $1500. She agreed to schedule it for Dec 20 so that all the bills would be covered this year since we've met the deductible. (Have I mentioned I really like her?!?) Hopefully if all goes well on the next endoscopy, we can stop the pulmicort steroids. 

I also made it a point that if Kaleb has another endoscopy he WILL have the versed medicine to calm him before the IV, which didn't happen last time. I told them how we were told there "just wasn't time" and they assured us it wouldn't happen again. Trust me, it won't. Not with this mama! I've learned to stand up for my child and fight for him and what's necessary and what's not.

I was talking with a friend last night about how we had prayed and prayed for a child for 3 years before getting pregnant with Kaleb, and how much of a miracle he truly is. I can honestly say at only 1 year old, he is my daily inspiration. Special needs and all, he knows how to light up a room and steal a heart within minutes. His tight grip hugs may be the sweetest thing I've ever experienced with a child. While I didn't ask for this situation or foresee it at all, I'll deal with the food avoidance and cooking special meals for him 3 times a day for as long as I have to for my miracle baby. Most days I feel like I don't have it altogether and feel a lot of stress and anxiety, but then Kaleb crawls over, sits in my lap and lays his head against my chest, and it's all worth it. Funny how God created children with the ability to soften hearts like that :)

Praying for today

As I've shared on this blog lately, things have been a little stressful at our house in the last few months. Between doctors appointments, testing, trying to come up with 3 meals a day for my child who can't eat much, crazy work schedules between Eddie and I, medical bills and just having a 14-month-old child in general, I've been a little edgy. I find myself angry, bitter, tired, worn out, flat out exhausted (just trying to get you to understand...), frustrated, and snappy.  Most days I realize that I'm being this way, but I don't know a way out of it. I feel like I'm in a never-ending cycle of no sleep and stress.

A few days ago, I hit a low. The situation seemed hopeless and all I could do was cry and pray. It was then that God spoke to me and told me something I felt like I should share. In the Lord's prayer, there's a line that says "give us this day our daily bread". That lead me to the story in Exodus 16 where God gave the Israelites what they needed - quail and manna, except God instructed they were to only collect what they needed for that day. The theme resonated with me. God provides for what we need today. Therefore, I'm going to ask him for what I need for today.

I started praying differently, asking God specifically for what I need today. Some days, it's patience and strength, other days it's just that my child would sleep through the night, today it's for some glimpse of hope that this situation is not eternal. Praying this way helps me to stay focused and not fall into the "forever" trap - that this is the way it's going to be forever and there's no way out. And you know what - since I've started praying this way, God has not disappointed. The last few nights, I've gone to bed with a thankful heart because I saw God work through what I had prayed for specifically for that day.

I challenge you - Pray to God specifically for what you need today. Let Him know what's on your heart and what you need help with today. You won't be disappointed.

My child is back.

Just a quick update as we are on vacation and trying to detox from internet as much as possible. It's been almost 2 weeks since Kaleb's EOE diagnosis and the start of his medicines. For the first time in months, I feel like I have my child back. He has been so incredibly happy this whole week and I can't get enough of his wet, slobbery kisses. Feeling so blessed this week for a diagnosis and treatment that is helping!!

I shared with everyone before that we were told he is severely allergic to wheat and barley, along with eggs and milk. We picked up his lab results and he also tested positive for a number of other things, including corn, oats, chicken (seriously?!) and rye. We have adjusted his diet and he's feeling so much better. Some of his new favorites include:

Tuna (apparently all fish tested negative- woohoo!!)

Larabars 

Fruit and veggie squeeze pouches

Gluten free pasta

And Hebrew National dairy free hot dogs.

Here's a few pics from our awesome vacation:

The Results Are In...

We finally got the phone call today that we had been waiting for. Kaleb's biopsy results are positive for Eosinophilic Esophagitis (EoE). While the diagnosis itself sucks, we are glad to have a diagnosis so we can pursue a treatment plan. EoE is basically a disease caused by food allergies. Kaleb's body sees food proteins as parasites and builds up white blood cells to "fight the infection". The white blood cells gather in his esophagus and cause it to swell. Symptoms include chest pain, reflux, choking, failure to thrive, difficulty sleeping and vomiting. Dr. Aljabi was fairly confident of the diagnosis on Friday, so we went ahead and started pulmicort, a steroid that is usually inhaled but we mix it with honey and he swallows it. This way it heals the esophagus. We were also prescribed Prevacid solutabs for reflux but our insurance refused to pay for it, so we have now been prescribed Nexium.

In addition to the EoE diagnosis, we also found out the results of the allergy tests. Kaleb is highly allergic to wheat and barley, in addition to the milk and eggs we were aware of. She said several other things showed positive, but those 4 things were the highest. 

Dr Aljabi really suggested going on the formula diet for a while for Kaleb's body to heal. However, at this point, I don't feel like its realistic for us. Kaleb LOVES food. He actually will hardly take a bottle at all. And because of the side effects of the steroid, the child can't get full. He had 2 full dinners tonight!! So taking away all food would be an incredibly difficult choice at this point. After talking it over, she was ok with us completely eliminating the top allergens to see if that makes a difference. We go back on Oct 28, so please pray with us that just eliminating the allergens from his diet is enough to help him! We do still have to supplement with formula, so we'll be picking that up tomorrow. I have no doubt those 2 pounds Kaleb lost will be going back on quickly!!

Lastly, Kaleb has an appointment at the special EoE clinic on Nov 5. This is the special clinic Dr. Aljabi runs. On that day, they told us to be prepared to be overwhelmed. We'll meet with Dr. Aljabi, Dr. McLaughlin (allergist) and a dietitian. He'll have a lot more allergy skin testing done to get more accurate results than the blood tests. I'm excited to get info and meet with someone to discuss food options! In the meantime, I picked up some books at the library this evening to read on vacation. 

Thanks again for praying for my sweet boy. We feel them every single day. The medicine has really started helping Kaleb sleep better, which makes for a happy mommy and daddy!! Praying it continues. :)

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!