When There Aren't Any Answers

"It's not this, but it could be that."

"It's not that, but it could be this."

"He may be at the beginning of something else auto immune-related that goes hand-in-hand with arthritis." 

"Or, he may not be."

"He may have a food allergy."

"Or, he may not."

"His body is trying to tell us something. Something is definitely going on; something is trying to present itself."

"Why don't we try X, Y and Z and have him come back in a month for a follow-up."

Oh, what a wonderful mix of happiness, joy, confusion and frustration. Gotta love it. Gotta love this auto-immune roller coaster we are on. So, excuse me while I am "real" here for a moment. Excuse me while I get to be tired, exhausted and frustrated at the moment. Excuse me while I feel pulled in so many directions. Excuse me while I am very happy about the good news, but need to vent.

"What does this all mean?," you may ask. It means we do not have any answers yet. And we may never have any answers. All I know is, as his mother, something is not right with my son. Something is "off" with his system. Blood in stool is not normal. Chronic diarrhea is not normal. Vomiting after meals is not normal. Unexplained high fevers that come and go on their own are not normal. Tiredness and lethargy all day long for a four-year-old boy is not normal. This is not normal.

It is more than him just being a "picky eater." He will sit down to eat, suddenly feel sick and run to the bathroom and then complain of horrible stomach pain. He will ask me to save his food and to not get rid of it because he wants to "try again to eat." But the majority of the time he returns to the table after the pain subsides, he can not even take a bite because he feels so crummy. And, I am not going to force him to eat when I can clearly see how pale and sick he is.

Did I mention I am happy? Well, I am! It may be hard to detect, but I am! I am thrilled beyond words about the "good report" we received yesterday. I am focusing on that and rejoicing over this great news, but it is this "no news" that also puzzles me and hangs over me.

As of right now, the GI doctor said there is not enough "solid evidence" to say it is definitely Crohn's or definitely Celiac. Yes. After all my son has been through, after all the months and months of horrible symptoms, after going through an endoscopy, colonoscopy, and an upper GI we do not have any answers. Yet. 

So, the "X, Y, and Z" his doctor is suggesting is removing all dairy from his diet. They said it will take several weeks before we know if it was dairy that was upsetting him because it will take that long for it to be out of his system. And, if that is the culprit then I am BEYOND THRILLED! I don't want my son to have Crohns. I don't want my son to have Celiac. I want him well! I am tired of seeing both of my kids health suffer. Beyond tired. 

So, if that means "fixing him" by changing JJ's diet and controlling his joint pain through medicine then that is by FAR a better "diagnosis." We can work with that. That's the easy part. The hard part is the not knowing what to do for him right now.

After eliminating dairy from his system, if he is still having pain, they want us to try eliminating gluten. One thing at a time, though, because if we eliminate both at the same time right now we will not know which one was causing the problem, if it is, indeed, food-related. In the meantime, they want him on prilosec so he can take his arthritis medicine. Also, eliminating gluten from his diet will be more difficult because he is barely eating anything right now as it is. It leaves him with even few options. Right now he needs the extra calories since he has been over nine months now since he has gained a substantial amount of weight. 

We do not have any answers, so we will continue to take each day as it comes. There are still many questions left unanswered: villi damage in intestines, elevated CBir1 antibody. His blood work from Wednesday came back and showed he still has an elevated sedimentation rate still, which his doctor now thinks may be related to the arthritis. 

I spoke with the GI doctor again this morning and he said if he is still having pain through the weekend to page the doctor on call or to call first thing on Monday and we would "go from there." He wants to see him one month from now for a follow-up appointment. And the rheumatologist wants to see both Mia and JJ in the next week or so. 

I have told the story of what has been happening in his body to doctor after doctor after doctor. I have taken him to numerous appointments (while he is having horrible diarrhea episodes). We have been more than patient with trying to figure all of this out. He is tired. I am tired for him. I want him well. He needs a break from all of this. We all do.

That is where we are at. 

This is where I am at.

Waiting

Today was long.

We took JJ to Tufts today for his scheduled MRI (which I fought hard to have moved up). A nurse met us in the MRI department and told us, "Mr. & Mrs. Del Turco, there has been a change of plans." Always a fun thing to here when you've planned for something else....when you had your son do the "prep" for one procedure and told him "X, Y & Z are going to happen to you today," and they decide to change things on you.

She went on to tell us that JJ's GI doctor and the radiologist talked and decided the anesthesia for the MRI would be too risky for JJ. He would have to drink a bunch of barium and then they would have to put him out so he would be perfectly still so they could get the pictures they needed. She said the amount of anesthesia they would have to give him might be too dangerous since he is so young. If it was an adult having this procedure done, they'd be able to drink the barium and then lay perfectly still. Not a four-year-old boy, though.

So, after all that....they decided an Upper GI Series would be a better plan to try to figure out what was going on with JJ's digestive system. He had to drink a big, thick cup of barium and then had to lay on the table as they watched it travel through his body and take pictures of it traveling through. Then they had him go out into the waiting room and drink another cup of barium (we had to do a lot of encouraging and coaxing to get him to drink it) and every 30 minutes we went back in for more x-rays. Once it reached the end of his colon, they were able to get the pictures they needed and see the area they can not see when they did the endoscopy or a colonoscopy.

I must say, my son did a remarkable job. So proud of him!

After that, we went to see his GI doctor a couple of floors down. By that point, JJ was starving and all he could talk about was getting an egg and cheese breakfast sandwich at Dunkin Donuts. I think every doctor and nurse knew what my son was craving because he told EVERYONE! So funny! Despite everything, he brought some humor to the situation. Love that boy!

We met with his doctor who told us it would take 24 hours to get the test results back and that he thought JJ might have some sort of inflammatory bowel disease (Crohn's or ulcerative colitis). He told us he would review the tests from today and let us know (hopefully) tomorrow. He also told us not to put him on a gluten-free diet just yet, but that we could eliminate dairy because it causes a lot of tummy trouble. He kept telling us, "Listen, his system is trying to tell us something here. His body is trying to say something. Things are definitely not right. We will get to the bottom of this." So good to have a doctor who is fighting with you for your child.

After the appointment, we headed back up one floor so JJ could get blood work done again (he just had blood work done on 11/1/11). By that point, his tummy was starting to bother him. When we left the hospital, he complained about tummy pain the entire way home. My sweet boy....today was so hard for him!

So now, we wait. Hopefully, we will have more answers tomorrow.

For now, I pray everyone in our house gets really good rest tonight, including myself, for it has been an incredibly long day.

Clear Eyes, MRI and Wrist Warmers

Clear Eyes:

Mia has been on Indocin (4.5 mls, 2x a day) for 16 months now and has been doing very well on it. She does complain from time to time of pain in her writing hand (top knuckles), but other than that, she has been pain free! She also went in last Monday to MERSI to get her eyes checked for uveitis and got a report that her eyes are still clear! That is huge - she has had clear eyes since she was diagnosed with JA over four years ago. Thank you, God! 

MRI:

JJ goes in this Wednesday morning to Tufts for an MRI (with sedation). They will be checking an area of the intestines they were not able to see when he had the endoscopy and colonoscopy last month. What are they checking for? Well, right now he is showing signs of Celiac AND signs of Crohns. So, the doctor is hoping the MRI will point us in the right direction as far as figuring out what is going on in his body right now. We are praying for answers to what has been going on with him. He continues to have joint pain in his ankles, left elbow and left wrist, along with stomach pain, chronic diarrhea, rectal bleeding, and shin pain and bruising. He is still skipping meals and if does he eats he usually tells me afterwards he feels "yucky." He has thrown up a couple of times after eating. Sometime he will say he is hungry, sit down at the table to eat (then run to the bathroom) try to take a bite and feel sick. He will then ask to be excused to lay down on the couch, but requests that I don't take his food away because he would like to try to eat it in a bit. However, most of the times when he comes back to the table, he is still feeling too crummy to eat. And so, he doesn't. And, we try to start fresh again the next day....

His rheumatologist contacted me and wants him back on the Mobic (Meloxicam - 1.3 mls, 1x a day). He has been off of it for over a month now. His GI doctor agrees with the rheum - he needs to go back on it to alleviate his joint pain. The rheum said to back off on the Mobic if he is feeling any worse while on it. So, we will see how this goes. I started him back on it tonight. Right now, he has the rice sock (the only one we have that my cousin made for ME many, many moons ago) on his tummy and says his legs (shins) hurt and he feels "yucky." I do what I do every night: pray over him, make him as comfortable as possible, heat up the rice sock several times until he finally falls asleep with it either on his tummy or on his legs. In the morning, the first thing that wakes him up is tummy pain/discomfort.

I will keep you posted on how everything goes with JJ on Wednesday. He has an appointment with his GI doctor immediately after the MRI. Thank you to all of you who have texted, emailed and called to inquire as to how he is doing. We appreciate all of your love, prayers, kind words of advice and encouragement right now.

Wrist Warmers:

In other news, I was perusing Pinterest a few weeks ago and found these awesome "wrist warmers" - I like to call them "wrist soothers" or "pain alleviators" - for those with arthritis. I thought I'd pass them on to all of my arthritis friends (helloooo! stocking stuffers!!!). This seller, The Ferris Wheel, has several different "warmers" featured in their shop. My kids both want one (and I would not mind them having one of their very own so they would stop fighting over MINE! Ha!). Definitely a great Christmas gift idea for those suffering from RA and little ones suffering from JA. I know our rice sock is in constant demand in our house and gets used on a daily basis. I think I might need to pick up a few of these:

Persistence Pays Off!

JJ:

After numerous phone calls today, trying to be as polite but as firm as I could be, I was able to get JJ's MRI moved up from 11/23 to 11/16. His symptoms continued today, but at least we are getting somewhere. Blood work came back showing an elevated sed rate, but we don't know if that is from the arthritis or from something else going on in his body. CBir1 still elevated over 100 still and villi damage. Now we only have to wait eight days instead of 16 for the MRI. I'll take it! Thank you, God, for opening doors!!

Mia:

Clear eyes today! Clear eyes for the last FOUR YEARS! She goes back in February for her next check-up. Her brother will be going with her at this appointment (he goes every 6 months now; Mia goes every 3 months).

James:

My sweet boy is making progress in physical therapy and speech therapy. Slowly, but surely, he will get there! 

Tomorrow is a new day and this Momma is ready for bed!!

You Belong To God

Children, you belong to God, and you have defeated these enemies. God’s Spirit is in you and is more powerful than the one that is in the world. 
1 John 4:4

For those who pray, we are asking for prayers today. 


JJ's symptoms - stomach pain, chronic diarrhea, shin and foot pain - have not stopped. On Friday, he vomited immediately after eating dinner. Eating food has been a challenge. He is strongest in the morning and will eat a gluten free/dairy free waffle and Chiobani yogurt and drink a Good Belly drink, but after breakfast is when the lethargy and no desire to eat for the rest of the day sets in.

This has been going on for months.


This has to end. 


Doctors told us the earliest they can get him in for an MRI is November 23rd at 9:00 a.m. He has to be sedated because he is so young. Which means we have to wait another TWO WEEKS for an MRI. Ridiculous. 


I put a call in this morning to the Pediatric GI department at Tufts to stress the importance of moving the MRI up. The receptionist remembered me from last week (it is nice when you don't have to retell your child's story; when you get someone who remembers!). She said the only one who can move up the MRI is the doctor and told me she would page him immediately and then call me back.


Now we wait.


Please pray for JJ today. God is his Healer. God will open these closed doors. We speak peace to JJ's body - to his immune system and his digestive system. Hidden things revealed. Now!


Jonathan Mark Del Turco, III belongs to God!!

With Us

There is no end to His love. He's with us.

Catching My Breath

If your heart is broken, you'll find God right there; if you're kicked in the gut, he'll help you catch your breath. - Psam 34:18


Yesterday was one of those days where I found myself shouting, "FINALLY!" and then "WHY??" at the same time. Yes, it is great to finally feel like we are getting some answers to what has been going on with JJ for the last nine months (well,  the last 18 months if you want to count when the joint pain started). But, now that these answers are starting to present themselves, I can't help but ask, "WHY is this happening to our son?"


Brief recap:
JJ, was diagnosed with JRA back in April 2011. He was immediately put on Naproxen and started experiencing severe stomach pain and diarrhea. He was also extremely lethargic. He would sleep many hours in the afternoon and always looked pale. His appetite started to really take a hit, too. He would skip meals, only want soft foods (applesauce, yogurt, soft waffles, pastina, etc.). It was a lot more than just being a "picky eater" or "stubborn." My mom gut told me something else was going on with him. Our son was just not right.  


In July 2011, his doctor switched him over to Meloxicam  (Mobic) for his joint pain. So far so good. It did not take away all of the tummy issues, but it did lessen them...for a bit. One thing she did notice was JJ was not gaining weight. He has been at a steady 35 lbs. since last March. In July and August she ordered several things to be done:


Ultrasounds on his hips (she detected arthritis on the right hip), and ultrasounds on both elbows and wrists. The ultrasounds showed there was no arthritis on his hip but in his left wrist and left elbow (also, fluid sitting on his left elbow). She also ordered a full round of x-rays on all of his joints (neck, elbows, wrists, hands, hips, knees, ankles and toes). The x-rays confirmed that the left elbow, left wrist and left knee were all affected by arthritis. After all of that, she said for us to make a follow-up appointment a month from then (September) to see how JJ was doing on the new medicine and also check him for Celiac Disease because he was not gaining weight. 


Preschool started up in mid-September. That following Monday, only the second week into school, JJ was hit with a temp of 104 and I rushed him to the ER. The doctor said he had coxsacchi virus (hand foot and mouth) and stomatitis. He was having severe pain in his tummy and the fever was doing a number on him as well - pale, not talking, lethargic, eyes rolling. I brought the Pedi ER doctor up to speed on what had been going on with JJ since he was diagnosed with JRA and requested blood work to be done to check for Celiac Disease, Crohns and Colitis. She told me while she did agree those things needed to be checked for based upon the symptoms he was having, that the arthritis was going to throw everything off. She said most likely the tests would come back showing a high sedimentation rate (inflammation in the body) and there would be no way of telling if that was the arthritis or if he had Crohns or Colitis that was causing his sed rate to be high. She ordered the tests anyways, and they came back just as she said - high sed rate. There was no way to tell because the arthritis "masks" everything. She gave him fluids and tylenol to get the fever down and, in the end, told us the best way to find out if he had Crohns or Colitis would be through a colonoscopy and suggested we schedule an appointment with a GI doctor.  


The following week JJ started back up on the Meloxicam and returned to school.


And then, JJ got hit again the first week of October - severe stomach pain, diarrhea that was happening about every 15-20 mins, fever of 100.3 and vomiting every morning around 5am (he would only vomit around that time every morning....never throughout the day). I knew this wasn't just a "bug," but that something else was going on. I called my other son's pedi gastrointestinal doctor (we are at Tufts a lot...for all three kids) and they told me to bring him in. We were there for hours because as soon as the doctor would come in, JJ had to rush out to go to the bathroom because of the diarreha. By the time we had gone back to the room, the doctor had left to go check on another patient. This went on for hours. Finally, the doctor told us to stop the Meloxicam and start him on Prilosec and to keep an eye him over the next 24-48 hours. If he stayed the same or got worse to bring him back in and he'd schedule a colonoscopy and endoscopy. 


When we got home that afternoon, JJ took a long nap and then woke up screaming from pain in his ankles. I have never heard him cry like that before. He was beyond miserable. He could not even stand up to walk. He told me he had to go potty, so I had to carry him and even then he could not stand at the toilet to go because his ankles hurt him so bad. So, I held him up and then carried him back to bed and he asked me to put ice packs on his ankles for the pain. I did and immediately called the rheumatologist on-call. He told me I could only give him Tylenol for the pain and to try to put him in a warm bath and to call back if he got worse.


Eventually, the pain in his ankles did subside, but his other symptoms (stomach pain and diarrhea) did not. We were back at Tufts two days later, repeating everything all over again. 


They scheduled an endoscopy and colonoscopy on 10/7/11 for JJ. My other son's doctor did the procedures on JJ. He took biopsies of different areas in the upper and lower intestines and told us it would take 7-10 days to get those reports back.


It took about a week for the diarrhea to completely subside and for JJ to get a little bit of his appetite back. Still not normal, though. He would eat a bit of breakfast every morning, but getting him to eat anything for lunch or dinner was impossible. Some nights, he was asking to go to bed at 5:30 p.m. (that is if he did not take a 3-4 hour nap that afternoon).


Then the biopsies came back showing some inflammation in the upper intestines. However, the doctor said he wanted to wait for the pathology report to come back to tell us if JJ was at the beginning of something (Crohns, Colitis or Celiac). Until the pathology report came back, the rheumatologist instructed us to hold off on all arthritis meds.


So, we wait another two weeks. In the meantime, JJ's immune system has just had it. The diarrhea and stomach pain are back and now he has a upper respiratory infection to boot. 


FINALLY, I took him yesterday to see the pedi GI doctor to discuss the pathology reports. He said several things:

1. There is villi damage in JJ's small intestines, which is an indicator of Celiac Disease:

When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.


2. JJ's CBir1 antibody test (marker for Crohn's) came back very high. Normal is 34 or below. JJ was over 100. The other marker for Crohn's they check for came back negative, but that marker only comes back positive in 30 percent of people who have Crohns. The only way to determine if it is Crohn's is through an MRI.


3. After examining JJ, the doctor saw that he has "skin lesions" on his shins, a common sypmtom of Crohn's Disease. He immediately took pictures of his shins for documentation and that was when he said he was leaning more towards this being Crohn's, but wanted to schedule an MRI to confirm. JJ has all the other symptoms: chronic diarrhea, stomach pain, rectal bleeding, no weight gain, etc. The doctor said there is a large portion of the intestines they were not able to see during the endoscopy and colonoscopy that the MRI will show. The MRI is scheduled for 11/17 and JJ will be sedated for it. 


So, we are looking at one of two things here - either Celiac or Crohn's. The doctor told us, of the two diseases, Celiac is the better one to have because it can be controlled with diet. If it is Crohn's, as he suspects, JJ will need to start immediately on Methotrexate (injections) to control both the Crohn's and arthritis.


As a parent, I just want to see my son better. This has been going on for far too long. I want him to eat and not complain that he feels sick afterwards. I want these random fevers to stop. I want him to be strong and to be gaining weight, not pale and lethargic. I want him to be outside, running around and playing like most four-year-old boys do, not taking four hour naps in the afternoon or saying he wants to sleep when he is school. I want the stomach pain and joint pain to stop. I don't want him missing out on life. Most importantly, I want to get him feeling better fast. And, if that means starting him on Methotrexate to help him, provided that it is Crohn's that we are dealing with here, then I am all for it. 


Yes, I feel like I have been "kicked in the gut." No parent likes to hear bad news about their child. But, He is helping me to "catch my breath." God will not give us more than we can handle. So, we can handle this. We will get through this, just like we have gotten through everything else with our children's health challenges. And, our children will have amazing testimonies to share of how they overcame these challenges. 


THEY ARE OVERCOMERS.

World Arthritis Day 2011

World Arthritis Day Recognized!

The Empire State Building, in partnership with the Arthritis Foundation, will be illuminated in blue on the evening of October 12 to commemorate World Arthritis Day and honor the 50 million Americans who have arthritis, the nation's leading cause of disability.

Flare?

Last Friday, she fell when she stepped off the bus. She stepped off the bottom step with her left leg (the weaker of the two) and it did not support her. Her knee buckled and she fell. 

Ten minutes later, she was telling me about her day and went to take a step backward with her left leg and her knee gave out again. Down she went. I try not to make a big deal about it when it happens, but I can't help but think, "What the heck?!"

And, that's when I remembered. Jay and I have seen this happen before. Right before a flare.

So, I was quite mad at myself today for not listening to my "mommy gut" on Sunday when I agreed to let her do the bouncy house at our annual church event. I watched her jump and jump and jump some more while I kept thinking to myself, "This is a bad idea. This is a bad idea!" But, how do you say "no" to your child when she wants to have fun with her friends? How do you tell her, "They can, but you can't." It sure is hard. Especially when everyone around you is saying, "Let her be a kid! Let her have fun!" But, they don't see the aftermath of what a bouncy house can do...

The left is clearly bigger than the right, but the right is also a bit puffy. See those lovely red spots on top of her knees (especially the one above her left kneecap)? Well, what we've learned from almost four years of PT is redness on skin near a joint indicates where fluid sits. And boy, were both knees hot!

She has not woken up with joint pain in over a year now.

It's not fun when your child wakes up and starts her day with pain. It's not fun watching her try to straighten her legs and can't. It is not fun watching her limp to the bathroom or have her beg you to carry her. 

No one sees THAT, but me.

She did go to to school today. But, around 10:30 a.m. I received an email from her teacher saying she was complaining of knee pain. Her teacher told the gym teacher to allow Mia to self-limit in class so as to not aggravate her joints in any way. When she got off the bus today, she was in tears. So, off to bed she went and she slept for two hours.

In the meantime, I emailed her rheumatologist to give her the update. I am still waiting to hear back.

Most importantly, we pray for our sweet girl and put everything in His hands.

Having a GoodBelly Helps Strengthen Ones Immune System

From the very beginning of our journey, we have believed that diet has had a role to play in our fight against juvenile rheumatoid arthritis. We have witnessed it first-hand - when Mia was 22 months old and diagnosed with JRA, we put her on a gluten-free, dairy-free, egg-free diet and added cod liver oil in and within a month her sedementation rate (inflammation in her body) dropped drastically. Doctors and therapists were amazed at how quickly we were able to get her flare under control. 


But now, we have two kids fighting the same disease. JJ has only been on NSAIDs since April 2011 (Naproxen and now Meloxicam). But, Mia has been on NSAIDs (Naproxen, Ibuprofen and now Indomethacin) for 4 year now. I know there are worse, stronger arthritis meds out there, but still, that is a long time for a child to be on medicine...every day...twice a day...no breaks....no remissions (yet!). 


In the meantime, I am going back to the beginning. Turning over every rock. Comparing their vaccinations, from their first shot to their most recent. And, doing whatever I can for them NOW to protect their bodies from any long-term, potential damage caused by their daily medicines. 


So, when a friend suggested I try something new, something healthy for my kids - something that would help their immune systems and their tummies, too - I said, "Yes! Absolutely yes!" While NSAIDs keep joints happy, over time they destroy tummies and intestinal tracts. This isn't anything new. We knew this when we started our journey with Mia. It is in the long list of side effects on every NSAID my kids have taken. However, alleviating their pain and getting the flares under control far outweighs the side effects of their medicines. You do what you can immediately to make them better, fast. But, truthfully, what has always been in the back of my mind is, "What is this going to do to their bodies in the long run? Will there be side effects to deal with down the road?" 


I watched the video and I was sold. I knew I could not pass this up. I immediately went out and bought our family some GoodBelly juice!

The way I see it is, "What can it hurt? If anything is will help their immune systems AND help their tummies at the same time!" Double bonus.


My friend also shared this article with me that was in Science Daily entitled, "Study Finds More Gut Reaction to Arthritis Drugs; Stomach Acid-Suppressing Drugs Appear to Damage Small Intestine." Here is an excerpt from the article:


"Suppressing acid secretion is effective for protecting the stomach from damage caused by NSAIDs, but these drugs appear to be shifting the damage from the stomach to the small intestine, where the ulcers may be more dangerous and more difficult to treat," said Wallace. He is director of the Farncombe institute and professor of medicine of the Michael G. DeGroote School of Medicine at McMaster.


He added that the use of probiotics is being investigated as a potential cure for the small intestine damage.

So, bottoms up! Here's to probiotics and trying new things that can only help along the way.

Rheum Report

While we were on vacation, taking a break from life, JJ's rheum emailed me and told me the results of his ultrasounds and x-rays on his joints (elbows, wrists, hands, hips, knees, ankles, feet and toes). She said:

"The ultrasounds showed arthritis in the left wrist and left elbow (as we suspected). The other films were okay, including his neck."

So, based upon this report and the ultrasound he had done this past May on his knees, the results show there is arthritis in the following joints:

- left elbow (fluid sitting on the joint)
- left wrist
- left knee (fluid sitting on the joint)

Praising and thanking God there is no arthritis in his hips or neck!! This is HUGE!

He has been on Meloxicam for the past week now and it is much gentler on his tummy. While it is a stronger medicine, he loves that he only has to take it once a day! So glad to have found something that alleviates the pain in his joints and leaves him with a happy tummy.

Up next: uveitis check-up this Friday at MERSI for both Mia and JJ.

Waiting

Yesterday was definitely one of our longest appointments at Tufts since we started going there four years ago this month. Jokingly, I told my husband, "We should buy an apartment in Boston to save on gas and parking!"

Hm. Something to consider! ;o)

We got there at 9:30 a.m. for JJ's ultrasounds and x-rays. JJ did a remarkable job! He had to lay completely still for 1.5 hours as they did ultrasounds of his hips, elbows and wrists. How many four-year-old boys do you know who can lay completely still and not move for that long? It took some encouragement from me, but he did it. And, was very happy when it was over. The ultrasound not only shows if there is fluid on the joints, but also shows if there is increased blood flow to the joints, which indicates there is inflammation in that particular joint. An ultrasound was already done on his knees back in April, showing there is fluid on the left. The hips, elbows and wrist were checked yesterday because they are still bothering him, even after he has been on Naproxen for the last several months.

Then we we headed over to have x-rays done of his neck, wrists, hands, hips, knees, ankles, feet and toes. This is what the rheumatologist did when Mia was first diagnosed four years ago and what should have been done for JJ this past April when he was officially diagnosed with JA.

Sometimes, going with your gut and switching doctors really does prove to be the best decision after all.

It was noon when we were finally taking a break for lunch.
Mommy Tip: If you ever have to spend a day at Tufts with two young children, do not, I repeat, DO NO venture into Chinatown to take them to McDonalds. No matter how much they beg.

It is a bad idea.

And that is all I have to say on the matter. :)

After lunch, we headed up to the sixth floor to the Otolaryngology Department for a post-tonsilectomy and - adenoidectomy appointment for Mia and an appointment for JJ for the ENT to check his tonsils. (Keep in mind it is now 2:00 p.m. and both kids have just about had it with their day trip to Tufts!) Mia went first. Technically, this was our second post-surgery visit for Mia. We had to take her back six days after surgery because she started having horrible pain on the tip of her tongue that was keeping everyone up at night. This unusual pain wasn't from the instruments they used to depress the tongue during surgery. That pain would have occurred a day or two after surgery, not six days after and not on the tip of her tongue.

The ENT spoke to the rheumatologist and they both agreed that Mia's immune system was acting up. The pain on her tongue was because she had coxsackie virus (hand, foot and mouth disease). She was hurting more from having coxsackie than from the tonsillectomy! When he looked in her mouth yesterday, he said the surgery site looked great, but she still had some ulcers in the back of her throat from the virus. And, there is nothing we can do for her. We have to ride it out.

We brought JJ in to see the ENT because he has been having eating issues and we wanted to make sure his tonsils were not causing the problem. He will only eat soft foods (pastina, yogurt, applesauce, oatmeal) and hard foods (carrots, apples, chicken nuggets, fries) take him forever to eat and sometime he chokes. He went through a series of questions with us concerning JJ. He asked us: "Does he clear his throat often?" "Yes." "Does he snore?" "No." "Does he get ear infections and chronic colds?" "Yes, in the winter months." JJ gets more ear infections than any of my other kids. "Is he gaining weight?" "No." We told him his rheum noticed that last week at his appointment and is testing him next month for Celiac Disease.

After asking us a slew of questions, the ENT checked out JJ's tonsils and said they are large, but not as large as Mia's were (tonsils peak between ages 5-8). He recommended that JJ should see a Feeding Specialist at Tufts (I am thinking in my head, "Yes, let's definitely start looking for an apartment in the area!"). They would be able to tell if the tonsils were the problem or not. If they are, then they will be coming out. If not, then there is no reason to mess with them.


In other news: JJ started taking Meloxicam (Mobic) this past Monday and really likes taking his medicine only once a day instead of twice.

Up next for JJ: appointment with Feeding Specialist and then getting checked for Celiac Disease next month. We should have the results of the ultrasounds and x-rays back by this Friday/next Monday.

Up next for Mia: 504 Plan meeting for kindergarten with Head Teacher.

Up next for both kids: Uveitis check-ups at MERSI next Friday.

Up next for Mommy: a nap.

Tonight's Prayer

This is what I do on the eve of our appointments in Boston.: I stay up. I check on them. I pray for them. I check on them again. And, I don't sleep much. 

But tonight, I decided to do something different. Instead of going to bed with dread hanging over me and waking up with it in the morning as I wonder what new news tomorrow's appointments will bring, I decided to prepare myself mentally, emotionally, physically, SPIRITUALLY now for our son, Jonathan, and for his appointments tomorrow in Boston. 

Tonight's prayer...

Sweetest boy with such a tender soul, I pray for you tonight. I just tucked you in one last time, after you just fell out of bed, and I pray for peace to flood you through and through, touching every swollen, achy joint even as you sleep. Tomorrow will be a good day, as we face it together as a family. We will hear good news and good reports. And, despite what we are told, we know what the final outcome will be - we win. Period. I thank God now for the good news that will come. It might not happen immediately, but it will happen. We believe this for you. We stand strong for you. We pray constantly for you.  And, we will not stop fighting for you....or your sister.

In the meantime, we love you. Dearly.

“So now, take your positions and watch this great thing that the Lord is about to do in your sight.

1 Samuel 12:16

"Hero Foods"

I have said it before and will say it again, "There is healing in eating the right foods." Especially foods that fight AGAINST arthritis and promote a healthy immune system - like cod liver oil, which my kids take every day.

And, if you still don't believe me, read this chef's story that was featured in The New York Times about his "hero foods."

Incredible!

JJ: Switching Meds

I took my gang to JJ's follow-up appointment today with our new rheumatologist, Dr. Miller. She is wonderful. I am really, really, really glad we switched doctors. She is so thorough with her exam and my kids really, really like her. You don't always get a doctor who not only knows what he/she is doing AND has wonderful bedside manner...especially with kids. I love that!

JJ has been on naproxen since April. It has definitely helped to ease his pain, especially in his knees, ankles and toes. His energy did take a big dip in the very beginning and we took him off the naproxen for three day and in those three days his pain was back in his knees, ankles and toes. He was waking up at night again, screaming from joint pain and was complaining about pain when he woke up in the morning. So, back on naproxen he went. However, to keep his energy up, but control his pain, he went from 10mls to 8mls of naproxen per day.

While the naproxen has helped some joints, it has not eliminated pain in other joints. He has fluid sitting on his left elbow (he can barely touch his left hand up to his left shoulder without yelling and pulling his arm away from you), his left wrist is now swollen and stiff and Dr. Miller also believes he has arthritis now in his right hip. When she went to check his hips, he winced from pain when she checked the right side (Have I mentioned how much I love her thorough exams?? Our previous doctor NEVER checked for these things!)

In addition to joint pain, he has also had tummy troubles since he started the naproxen. We started him on Zantac two weeks ago (1mls - 3x a day) and he still has stomach pain. So, because the naproxen is not taking care of all of the joints and because he is still having stomach pain, Dr. Miller is switching him to a new medicine - Mobic (Meloxicam). It is still an NSAID, but it is supposed to be easier on the stomach. And, the nice thing is he only has to take 0.5 mls once a day! He is to continue the Zantac while he is on Mobic (Meloxicam).

Dr. Miller was concerned that JJ has not put on any weight since March. So, because of all the tummy trouble he has had and no weight gain, she wants labs done to have him tested for Celiac Disease when he comes back in a month for a follow-up appointment.

In the meantime, when Mia goes in for her post-surgery follow-up appointment on Tuesday, August 9 with Dr. Vecchiotti to check to see how everything looks after the tonsillectomy and adenoidectomy she had a few weeks ago, Dr. Miller wants ultrasounds and x-rays done of several of JJ's joints: neck, elbows, wrists, and hips. It will be one very full, very long day for us at Tufts - JJ's ultrasounds and x-rays will be all morning long, then a break for lunch and then off to see the ENT at 1:15 p.m.

So, we will start this new medicine and see how he does on it. Unlike naproxen where I know what the side effects may be (stomach pain, bruising easily, etc.), Mia has never taken Mobic (Meloxicam) before. I am praying this new medicine will be easier on his system and bring his joints some much needed relief.

Up next: August 19 - Uveitis appointments at MERSI for both Mia and JJ.

In the meantime, we will be enjoying the rest of our summer. It has flown by so quickly! Can you believe Halloween has already hit the stores?? Before you know it, school will be in full swing with Mia in kindergarten and JJ in preschool five days a week. I am hoping to catch up on my sleep a bit this month and enjoy these last few weeks with my kiddos before things really start to speed up! :)

Happy summer to you all!

I Remain Confident

Psalm 27

1 The Lord is my light and my salvation—
whom shall I fear?
 The Lord is the stronghold of my life—
of whom shall I be afraid?

2 When the wicked advance against me 
to devour me,
 it is my enemies and my foes
 who will stumble and fall.

3 Though an army besiege me,
 my heart will not fear;
 though war break out against me,
 even then I will be confident.

4 One thing I ask from the Lord, 
this only do I seek:
 that I may dwell in the house of the Lord
 all the days of my life, 
to gaze on the beauty of the Lord
 and to seek him in his temple.

5 For in the day of trouble 
he will keep me safe in his dwelling; 
he will hide me in the shelter of his sacred tent 
and set me high upon a rock.

6 Then my head will be exalted 
above the enemies who surround me; 
at His sacred tent I will sacrifice with shouts of joy; 
I will sing and make music to the Lord.

7 Hear my voice when I call, Lord;
 be merciful to me and answer me.

8 My heart says of you, "Seek his face!"
 Your face, Lord, I will seek.

9 Do not hide your face from me,
 do not turn your servant away in anger;
 you have been my helper.
 Do not reject me or forsake me,
 God my Savior.

10 Though my father and mother forsake me, 
the Lord will receive me.

11 Teach me your way, Lord;
 lead me in a straight path 
because of my oppressors.

12 Do not turn me over to the desire of my foes, 
for false witnesses rise up against me,
 spouting malicious accusations.

13 I remain confident of this: 
I will see the goodness of the Lord
 in the land of the living.

14 Wait for the Lord;
 be strong and take heart 
and wait for the Lord.

Goodbye Tonsils! Goodbye Adenoids!

We are taking our daughter in to Boston this morning to have her tonsils and adenoids removed. Kind of a hard thing to explain to a 5.5 year old, especially when we say the word "hospital" to her and the first thing she remembers is when she was 3 years and had her joints drained and injected (kids remember everything! EVERYTHING!). After we told her today, she asked me, "Well, will they grow back??" Sweet, sweet girl!! Let's pray they don't!

Mia will be staying on Indocin (her arthritis meds; 9mls total) during the healing process. Her rheumatologist and otolaryngologist are working together to make this surgery and recovery as easy as possible for Mia. She is in good hands - with her doctors and with her family. Mommy and Daddy will be there every step of the way!

So, dear friends, if you think of it as you go about your day, please pray for our sweet girl:

Please pray for no fear. 

Please pray for the doctors. 

Please pray for wisdom.

Please pray for a quick recovery. 

Please pray for NO FLARES. 

Please pray for our family.

"There's hope for your children." God's Decree. 

Jeremiah 31:17

"As a mother comforts her child, so I'll comfort you." 

Isaiah 66:13 

Two BIG "OOPS"!

On Monday, we were told Mia had polyarticular arthritis and JJ had systemic arthritis.

On Tuesday, we were told that was a big mistake.

Mia and JJ both have oligoarticular arthritis (Mia has developed extended oligo in her writing hand). Oligo is a lot different than poly and a LOT different than systemic, but still serious. And, both kids still need treatment.

How this "oops" happened:

Apparently, a number is assigned to each patient based upon their symptoms/diagnosis. I watched the nurse look up Mia's "number" on her chart. She then proceeded to look her number up on a list to find out what type of JA she had (we were always told Mia had "pauci"...which is "oligo"). I watched her write "polyarthritis" down on her blood work order and hand it to me (I have it here at home):

So, I asked her what JJ's chart said about him (we have never been told officially what type of JA his has). So, she looked it up...and pointed to the word "systemic" on the list and gave me a look that said, "I am terribly sorry!" 

After informing my husband of this horrible news, I just sat there during the drive home and kept saying, "I am completely baffled." JJ has had fevers in the past not associated with a cold/flu and has always run a bit warm, BUT to say he is systemic is extremely serious. JJ definitely is not systemic.

So, I emailed the doctor yesterday to confirm what I had been told and she called me back Tuesday evening and apologized for the "mix-up" and explained that the manual number system and the computer number system were different (?) and that Mia and JJ were definitely NOT poly and systemic. Well, thank God for mistakes!

Oligo is...

Formerly known as pauciarticular this type, is diagnosed when four or fewer joints – “pauci” and “oligo” mean “few” – are involved within the first six months. It’s particularly common in Caucasian children and accounts for about 40 percent of new JIA cases in that group. Girls are more likely to be diagnosed with oligoarthritis and to experience eye inflammation, a condition called uveitis. Oligoarthritis typically develops by age 6. At diagnosis, frequently only one joint is involved and it’s commonly a joint in the leg, such as the knee or the ankle.

If your child also tests positive for a particular antibody in the blood, called the antinuclear antibody (ANA), she faces the greatest risk of developing eye inflammation and will be monitored very closely for eye problems. Compared with other types of JIA, children with oligoarthritis are less vulnerable to severe problems with joint function.

Under the JIA criteria, oligoarthritis is broken into two groups. Children in which the arthritis is confined to four or fewer limbs fall into a category called persistent oligoarthritis. After the six-month window, some children will develop symptoms in additional limbs and will be diagnosed with extended oligoarthritis.

Treatment for Mia (ANA+):

Now on her third NSAID, and after increasing her dosage of Indocin from 6mls to 9mls, I asked the doctor, "Where are we going with this? What's next for Mia?" I explained the pattern we have seen for almost the last four years: Mia goes on Naproxen for a year and a half. Mia flares. Change meds. Mia goes on Ibuprofen (after receiving a drain and injection in her left knee and right elbow in Spring 2009). She goes on Ibuprofen for a year. Joints flare. Change meds. Mia goes on Indocin (a year ago next month). There is talk of remission and possibly starting to wean her off of meds (the is our second talk of remission since dx) and then hand starts to flare and we increase her meds.

Plan: see how she does on the increase dosage of Indocin. Need to get the swelling down in her hand and reduce the pain so it does not affect her when she starts kindergarten this fall, as the pain and swelling are in her writing hand. If her body does not respond to meds and if she continues to flare, the doctor would like to start her on methotrexate. However, before we do that, she really wants to give this a try because she said, "Mia is still so very young. She is only five years old. And, while methotrexate does treat the disease, it comes with a ton of side effects that we will discuss when/if we reach that point. But, because of those reasons, I'd like to stick with NSAIDS for now." 

Treatment for JJ (ANA-):

JJ's x-rays of his elbows showed he has a "small joint effusion" on his left elbow. The doctor mentioned draining and injecting that elbow should his joints not respond when to Naproxen. However, we are having a love-hate relationship with Naproxen right now. It greatly reduces the pain in his joints (not all of his joints, but most of them), but it is increasing the pain in his stomach. Since starting Naproxen, he has had several episodes of extreme tummy pain and/or doubled over in pain from cramping.The same thing happened with Mia when she was on Naproxen after several months. So, they are starting JJ on Zantac (1ml, 3x a day) to help reduce the pain. If this does not help, then we will need to switch to a different NSAID to find something that works for his entire body.

When we are going back: 3 weeks from now (after Mia's surgery)

"His huge outstretched arms protect you-under them you're perfectly safe; His arms fend off all harm."

(Psalm 91:4 MSG)

We Do Not Lose Hope!

Yeah, today was one of those days. It was the kind of day where you want it to be a really quick in-and-out check up for both kids (that's right...two kids with JA), but instead you are there for three hours and find out really crummy news.

Mommy side note: glad I thought ahead and made dinner before we made our trek into Boston to see the rheumatologist. Meatloaf and mashed potatoes were waiting for us after our three-hour appointment with all three kids in tow!

Mia's appointment was supposed to be a "clearance for surgery" appointment. She is scheduled to have a tonsillectomy and adenoidectomy next Tuesday (July 19th) at Tufts. Smack in the middle of summer. (Yeah, yuck.)

Backing up a bit....

In April 2011, I took Mia to see an ENT to get a second opinion on her ears - she has had an unusual sensitivity to certain sounds - the click of the seatbelt, the car door opening, going from inside of the house to the outside all bother her. While we still don't have an answer to the problem with her ears, during the appointment, the ENT happened to look in her mouth and told me, "Her tonsils are the size of two large walnuts. Have you seen these??" He continued to ask me if she has a problem with choking. I said, "She has...on raw fruits and veggies, like carrots and apples." He then asked me if she snores at night. I said, "She does....she has even had a couple episodes where she has stopped breathing for a second and then starts back up again (sleep apnea)." He said, "That's a result of the tonsils. They are so large that when she goes to sleep and her throat relaxes, those two tonsils almost touch and prevent air from passing through."

So. Those two walnut-sized suckahs are coming out next week. And, personally, I could not be happier because I really hate watching her choke on food and hearing her snore at night.

At the request of her rheumatologist, and recommendation of my dear friend Joanne, we changed over to a doctor he works with at Tufts and are really happy we did! Unlike the previous ENT, this one said Mia can continue with her arthritis meds (Indocin) AND take Tylenol with codeine (post surgery med) at the same time. He told us, "The surgery itself is simple, but I will not sugarcoat this - the recovery is brutal! It's two full weeks of a very sore throat." I think to myself, "Eh. She's gone through worse stuff. She can make it through this!"

The concern right now is how her body will respond during and after surgery in relation to her recovery and her arthritis.

Today, we met with a different doctor (Dr. Miller...who we LOVED!) because Dr. Lopez is on vacation and we could not get Mia in before surgery and she needed to have pre-op "clearance." First off, I loved that I did not have to introduce my children to her. As soon as she walked in, she introduced herself and  told me, "I know your family. I have known you for years. Your children's health is discussed in our meetings that we have every Friday." I was shocked. That speaks volumes...especially to a mother.

She started with Mia. She had her do "exercises" to test her joints that have never been done on her before. I was impressed, to say the least. Then she asked Mia where her pain was and Mia pointed to her right hand (her writing hand). After examining her hand, she agreed that she has two very swollen knuckles on the top of her index finger and her middle finger. She told Dr. Miller, "It hurts when I draw and when I write." Dr. Miller told me she definitely needs at 504 in place for kindergarten this fall (her pediatrician also confirmed this several months ago).

So, while we were told we may be able to start weaning her off her meds this summer, we are now INCREASING her dose because 1) her weight has gone up since her last visit (42 lbs.) and 2) her body obviously needs it. Mia will be going from 6mls (3mls, twice a day) to 9mls (4.5mls, twice a day). She can not take cod liver oil right now because it is a blood thinner. She ordered bloodwork to be done on Mia because 1) she needs to make sure she is okay for surgery and 2) make sure her blood coagulates as it should.

Good news with Mia: her leg length discrepancy has gone from 2cm difference to .5cm difference. She does not have a hint of scoliosis in her back anymore. SO HAPPY!!

On to JJ: When he is off meds, JJ's joint pain has been in the following areas: ankles, toes, writs, elbows and today he said his neck hurt. On meds, the pain is in his elbows - specifically, his left one. He can barely touch his fingertips to his shoulder without yelling from the pain. Dr. Miller also examined his tonsils and said we need to have him checked by the same ENT because she thinks they need to come out. Bah.

The really crummy news: JJ has been diagnosed with Systemic JA:

Systemic: Involving about 10 percent of JIA cases, systemic arthritis affects the entire body, beyond just the joints. Both boys and girls are equally vulnerable. Although symptoms can start any time during childhood, they generally emerge by or in elementary school years.


The first sign might be a stubborn fever, sometimes appearing weeks or months before your child complains of any joint discomfort or mobility issues. The fever can be quite high, appearing once or twice daily, before returning to normal. Your child might seem, by all indications, fine in between. Fevers also may be accompanied by a faint rash, one that ebbs and flares over the course of days. Often described as pinkish or salmon-colored, it’s not contagious.


Since this illness can affect the entire body, inflammation may occur elsewhere, enlarging the spleen or irritating the membranes that cover the lungs or heart. In many cases, the fever and other systemic symptoms fade over time. Eye inflammation isn't common with systemic arthritis, but your child’s vision will still need to be checked.


The condition can influence your child’s growth and appetite, making good nutrition a high priority. But the course of the disease, including the number of joints involved, can be highly variable and individual. Only over time will your child’s doctor have a better sense of the challenges she faces.



For the record, Mia has been diagnosed (almost 4 years ago) with Polyarthritis:

Polyarthritis: This type of JIA – “poly” means “many” – occurs when five or more joints are involved during the first six months. Roughly 25 percent of children with JIA have polyarthritis. Like oligoarthritis, it’s more common in girls. But its onset can occur any time in childhood. Both large and small joints, such as the fingers and toes, may be involved. Your child also may experience arthritis in the neck or the jaw, making chewing and opening her mouth more difficult.

Unlike oligoarthritis, polyarthritis more frequently affects joints on both sides of the body, such as the right and the left knees. Children with polyarthritis might face a lower risk of eye inflammation, but will still need to see an ophthalmologist on a regular basis.



Dr. Miller asked me why Dr. Lopez had not requested x-rays of JJ's elbows at his initial appointment a few months ago. I told her it was because he forgot. He sent the order in for the knees, but forgot to request the elbows. So, Dr. Miller sent me over to x-ray with JJ to take a look at his elbows. I will call tomorrow to get the results. But, for now, we are to keep JJ on Naproxen (4mls, 2x a day) and follow-up with the ENT in regards to his tonsils. 


Tomorrow, we take Mia in for blood work. Never a fun thing...especially with Mia. And, especially since she overheard the doctor mention it and she knows it is coming....


And, on that note.....goodnight!

Words to Live By...

Psalm 18:39

"You have armed me well for this fight..." 

(Psalm 18:39, MSG)

JJ has been in Naproxen for the last three weeks. He has still been having some wrist and elbow pain, but the knee pain has lessened - no more "night screams" from pain. However, the medicine has been making him extremely tired.

 JJ is my early riser. He is up when the sun is up (sometimes, he beats the sun) and the birds are chirping away. But, since he started the medicine, he has gone from waking up at 5:30/6:00 a.m. to waking up at close to 9:00 a.m. And then, there are the naps - he started taking 3.5 hour naps in the afternoon. That is a lot of sleep for a boy his age.

So, after week three of being on the meds, I emailed his rheumatologist last week and let him know what was going on and asked if this was normal for him to be so lethargic and tired on Naproxen. He said, "No, it is not normal….., so we might have to consider to switch the Naproxen to another anti-inflammatory agent, particularly if he started complaining of left wrist pain. I would suggest stopping the Naproxen over the weekend, keeping a diary of his pain, and if these are worse, making an appointment to see us next week."

So, I stopeed the medicine last Wednesday night (5/11) and started monitoring his pain. As each day went by, he got a little worse, waking up with more wrist, elbow pain and knee pain (primarily the left side, but occasionally complaining of pain on the right, too). We kept him off the medicine...until last night.

(5/16) JJ woke up yesterday morning with more wrist pain and complaining his hand hurt. At breakfast, he barely made it through half a piece of toast when he said he was not hungry (this boy LOVES breakfast...so I knew something was up). After church, I went to pick him up at his class and the teachers told me he was very tired and asking to be held and rocked. What??? My son? My very active three-year-old boy??

He went to bed last night around his normal time (7:00 p.m.) fell right to sleep. At 9:00 p.m., we heard him screaming in his room. So, my husband and I went down there and tried to calm him down so we could figure out what was wrong. He was screaming because of the pain in his knees. We immediately prayed over him and then tried to get him to calm down. When we knew he was not going to stop and that the pain was really bad, I looked at my husband and said, "Go get the Naproxen."

We gave him his normal dose (5 mls) and heated up the rice sock to put on his knees, but that did not fix it. He continued to scream and cry. So, we did the next thing we knew to do....put him in a warm bath. Before he got into the tub, I asked him to walk for me and that just made things worse because he couldn't walk because of the pain.

The bath seemed to help and, eventually, we were able to calm him down and get him back into bed.

I will be paging the rheumatologist on call today (Dr. Miller) to see what they suggest. Obviously, he needs the NSAIDS, but is Naproxen the right one? It does help with the pain, but it greatly reduces his level of activity and makes him very lethargic.

I will keep you posted on what they decide.

"…for I will contend with him who contends with you and I will give safety to JONATHAN and ease him."

(Isaiah 49:25)

May is Arthritis Awareness Month!

Did you know...

- There are more children with Juvenile Arthritis than those with diabetes, sickle cell anemia, and muscular dystrophy...all of which are more discussed in the media. JA is in the top 4 childhood diseases with cancer, allergies and asthma, and diabeties. And yet there is a huge shortage of pediatric rheumatologists and 1/3 of kids live 50 miles from a doc and 1 in 5 travel more than 100 mi to see doc. (Source: Raising a Child with Arthritis)

Good Morning!

There is a light
It burns brighter than the sun
He steals the night
And casts no shadow
There is hope
Should oceans rise and mountains fall
He never fails

So take heart
Let His love lead us through the night
Hold on to hope
And take courage again

In death by love
The fallen world was overcome
He wears the scars of our freedom
In His Name
All our fears are swept away
He never fails

All our troubles
And all our tears
God our hope
He has overcome

All our failure
And all our fear
God our love
He has overcome
All our heartache
And all our pain
God our healer
He has overcome

All our burdens
And all our shame
God our freedom
He has overcome

All our troubles
And all our tears
God our hope
He has overcome

All our failures
And all our fear
God our love
He has overcome

God our justice
God our grace
God our freedom
He has overcome

God our refuge
God our strength
GOD IS WITH US!
HE HAS OVERCOME!!!

Our Confession Over Jonathan

Just as we confess over Mia...

Jonathan Mark, III

“Our Warlike Gift From God”

Our Confessions for Jonathan:

“He's your bodyguard, shielding every bone;

not even a finger gets broken.”

Psalm 34:20

“Your body will glow with health,

your very bones will vibrate with life!”

Proverbs 3:8 (Msg.)

“It shall be health to your nerves and sinews,

and marrow and moistening to your bones.”

Proverbs 3:8 (Amp.)

“This is what the Sovereign Lord says to these bones:

‘I will make breath [a] enter you, and you will come to life’.”

Ezekiel 37:5 (New International Version)

“’But I will restore you to health and heal your wounds,’ declares the Lord…”

Jeremiah 30:17 (NIV)

“For He has fortified your gates against all enemies and blessed your children.”

Psalm 147:13

He who began a good work in JONATHAN will continue until the day of Jesus Christ – developing that good work and perfecting and bringing it to FULL completion in JONATHAN’s body.

Philippians 1:6

You have given JONATHAN abundant life. As your Word is spoken, life flows into

EVERY JOINT, TISSUE AND BONE of JONATHAN's body bringing healing and health.

John 10:10

Through Your Word, You have imparted life to JONATHAN.

That life restores his body with every breath he breathes.

John 6:63

He sent His Word and healed JONATHAN and delivered him from all destruction.

Psalm 107:20

…Himself took JONATHAN's infirmities and bore his sickness.

Matthew 8:17

…by His stripes, JONATHAN was healed.

Isaiah 53:5

…for I will contend with him who contends with you and I will give safety to JONATHAN and ease him.

Isaiah 49:25

I proclaim healing over JONATHAN MARK DEL TURCO, III. By Jesus’ stripes he was healed. The healing, life-giving, disease-destroying power of God is working in his body. It drives out all manner of sickness and disease. He is full of life, health, strength, and vitality. He is healed, healthy and whole from the top of his head to the soles of his feet. Every JOINT, TISSUE AND BONE in her body operates and functions the way God created it, with no disease or malfunctions. Every system in his body operates and functions with supernatural efficiency. Jesus, Himself, bore all sickness and disease; therefore, sickness and disease are not allowed to exist in JONATHAN’s body.

He is free from juvenile rheumatoid arthritis.

The divine life of God flows through JONATHAN, quickening and making alive his mortal body. He is free from pain, discomfort, distress, and all symptoms of sickness. God’s Word is medicine to his flesh. We are not moved by how he feels, how he walks, or any negative reports because we believe God’s Word and His Word says 
JONATHAN MARK DEL TURCO is healed! He is healed, healthy and whole in Jesus’ name.