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.
10.17.2013
10.09.2013
My child is back.
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:
10.01.2013
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. :)
9.27.2013
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!
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!
9.25.2013
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.
9.23.2013
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.
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.
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