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. :)