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.

Two Kids. SAME Diagnosis.

"Are you sure??"

(Deep breaths)

"Two kids? BOTH with arthritis?"

(Deep breaths)

"How can this be? How did this happen to BOTH of my babies?"

(Deep breaths)

We took JJ in to see Mia's rheumatologist yesterday afternoon and, after he examined him and checked the ultrasound results, he confirmed that JJ has juvenile rheumatoid arthritis.

I am in shock. Complete shock. And, for the second time in the last four years, time stood still for me as I listened to the doctor's report...

Your heart breaks when the nurse holds up a piece of paper with a series of smiley faces to sad faces (series of 1-10) on it and asks your child, "When you are in pain in your knee, which face are you?" And, when your child immediately points to the saddest face (10) on the page you feel just awful. No child should have pain in their body and be that sad. No child should get an old person's disease. No child should be diagnosed with arthritis at 3 (almost 4) years old.

Dr. Lopez took a look at his joints and could see what the PT saw last week - an enlarged left knee. I did not tell him what Mary (PT) saw because I wanted to see if he saw the same thing. He did. He also thought the right knee had some fluid on it, but the ultrasound showed that the fluid was all on the left. When he raised JJ's left hand up to touch his left shoulder, JJ yelled and quickly pulled his arm away. So, he asked him if that bothered him and JJ said, "Yes!" He tested the right arm and did the same thing - right hand to right shoulder. No pain on the right. Just pain on the left. So, he checked the left again and JJ had the same response (this time with a bit of anger because he did not understand why the doctor kept hurting him.) The doctor then apologized and told him he would not do that again.

"So, what is the plan? What do we do to alleviate the pain?"
(more deep breaths)

Dr. Lopez is starting him on Naproxen (5mls, 2x a day). He also wants him to get his eyes checked for uveitis. He sent JJ to the lab for blood work to check to see if he is ANA positive and to check to see if he has the HLA-B27 antigen in his body. He wants him to hold off on PT for now and wants to see him in four weeks.

He did say that while it is possible to have more than one child in a family with arthritis, it is rare. There are nearly 300,000 children in the United States have some sort of arthritis. A study done in 2002 showed that of those 300,00 children, only 300 of them are siblings with arthritis. He also told me that at some point he wants us to have James tested, as well.

So, we are researching, digging deep and looking into how this could have happened. It is not so much as "How did they both get arthritis?" as it is "Why are both of their immune systems compromised??" JRA is an autoimmune disorder. We have to remember this. I have to remember this. There is something deeper going on than what we see on the outside. The inflamed joints are a result of the immune system attacking itself.

Time to go back to the beginning and look at everything...with both kids. Time to pray and pray hard! Time to ask God again, "Lord, show me what it is! All hidden things revealed!" Time to give extra hugs and extra kisses. Time for extra understanding when they are miserable and crabby because it might be something more than just "being moody." Time to fight, once again.


In other news...better news...

Mia got a GOOD report yesterday. This is the second time since her initial diagnosis that Dr. Lopez has said, "I don't see any arthritis in her body." He wants her to continue taking Indocin (3mls, 2x a day) for the next three months and then he wants her to come back in to see how she is doing. If all remains the same, we we attempt to wean her off of meds again. This will be our second attempt at getting her off of meds.

He said he does want her to start back up with PT, though. Because the arthritis' damage to her joints, she now needs to have those joints and muscles around the joints strengthened. The good news is our insurance company JUST sent me in letter in the mail two days ago saying they will cover her again. YES!!

Diet decisions:
We are putting both kids on a GF, DF diet. Mia already eats that way, but we have let a few things slide here and there because she has been doing so well. But, right now is not the time to slip up with anything. We will be slowly putting JJ onto the diet, as well. We saw immediate results with Mia after her initial diagnosis when she was 22 months old - within a month her sed rate dropped from 60 to below 20. And, both kids will be taking cod liver oil (1 tsp, 1x a day) to help reduce inflammation in the body and lubricate the joints to protect them.

I will be back to updating this blog more often as it is one of the only ways for me to "dump" everything out of my head and "journal" it to look back on when things occurred. I ask that you pray and agree with us for our children and for our family for complete health and wholeness to their bodies. God perfects those things that concern us, especially when it concerns our children.

Thank you so much to everyone for your love and prayers yesterday. We love each and every one of you and thank God for you! And, a huge "thank you" to all of my arthritis friends who were so very encouraging yesterday with your prayers and support and kind words. We are all in this together. And, I am holding tightly onto hope that, one day, will WILL get to the bottom of this!

A Trip For Two.

Today, I ask for extra prayers.

Today, I ask that questions be answered. 

Today, I ask that concerns be put to rest.

Today, I ask for favor with doctors.

Today, I ask for strength.

Today, I ask that my mother's heart be flooded with peace.

Today, I stand strong on God's promise for my children - "They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV)

Today, we take not just one child to see the rheumatologist, but two.

For the last eight or nine months, our middle child, Jonathan, has been complaining of joint pain. I'd be lying if I said my heart does not sink just a little at the thought of what we might be dealing with here. But, I am trying my hardest to not "go there" and remain in a place of hope and peace.

I'd like to say it is something he picked up on from hearing his sister complaining about her joint pain. But, I honestly don't think that is it because Mia has been pain-free and her inflammation has been drastically reduced since she switched from taking ibuprofen to Indocin in August 2010. Thank God!

I'd like to believe it is growing pains, but when a child not only goes to bed with joint pain and then wakes up first thing in the morning (or all throughout the night) with joint pain, I can't help but wonder if we are dealing with something else here.

It started with his left knee (same as Mia). Pain that would wake up up in the middle of the night with tears and screams. Pain that would prevent him from walking from his bed to the door. So, I would do what I knew to do...pray, heat up the rice sock and put it on his knee and, if it was really bad, give him some ibuprofen. 

He does "W sit" and plays very hard on his knees, so we thought that might be the reason. But, we have really been watching him with it and correcting him if he is sitting the wrong way and even then days where he has not been rough on his knees he still has the episode of joint pain at night. 

We had blood work done end of March at the pedi's office and everything came back normal. However, the PT and rheumatologist said they look at symptoms first and blood work is always second. I've been told by other JRA moms that their kids blood work always comes back normal, but their kids still have painfully swollen joints.

Then, on the morning of April 2, he woke up crying and complaining of pain in his toes. Specifically, his big toe on his right foot (same as Mia). We were already heading in that day to have x-rays done of his knees, so when I got there I had them add toes and feet to the list. 

Two weeks after that, he woke up complaining of pain in his right elbow (same as Mia). Mia was already scheduled to see her PT that week (I always take her in to see Mary to get her opinion before a rheumy appt.). So, I brought JJ with me and asked Mary to take a peek. She confirmed that his left knee is bigger than his right - 1cm bigger around. 

Is it just sheer coincidence that he and Mia have pain in all the same joints (Mia also has ankle pain)? So weird.

So, here we go. Deep breaths today. 

Hyperacusis? Nope! Tonsillitis? Possibly...

I took Mia to see my baby's ENT yesterday for another opinion on her hearing sensitivity issues. I told him what the other doctor quickly diagnosed her with near the end of our appointment with her and he did not agree that she has hyperacusis. He said that this is very common in children around age four to have a "severe hypersensitivity" to sound. He believes that is what she has....and she should outgrow it by age six. Yay! We have been seeing this doctor for the past year now for my youngest son (who we got a GOOD report about yesterday. James is outgrowing his laryngomalacia and will not be needing surgery!!) and totally trust his opinion.

One unexpected issue that came up was he took a peek in her mouth and said her tonsils are the size of two huge walnuts and he thinks she needs to have them taken out. He asked me:

"Does she sleep with her mouth open or closed?"
"Closed."

"Does she snore?"
"Yes."

"Does she choke on certain food and, if so, which ones?"
"She has in the past...and just two days ago she choked on carrots. Usually, it happens with raw fruits and veggies."

"Have you ever seen her stop breathing at night?"
"I actually have, but figured it was just a fluke thing."

He said these things are all a result of enlarged tonsils. She is a slow eater because she is working harder to chew everything up so it can pass between those two large walnuts in the back of her throat. Poor girl! And, here I am trying to get her to hurry up and eat not knowing there is a reason why she is eating soooo sloooow.

He went on to tell me when she is asleep, everything in that area relaxes and those tonsils get closer to one another, preventing air from getting through. Her brain then send off a trigger to her body saying, "WAKE UP NOW! BREATHE!" and she quickly starts to breath again. This prevents her from ever entering into that deep sleep that her body needs.

So, the ENT believes they need to come out. But, for now, I am supposed to keep an eye on her at night for the next two weeks. He wants me to go in and sit in her room while she is sleeping for a few minutes and just listen to her breathing. And, then a decision will be made in two weeks if those big walnuts need to come out or not.

IMPORTANT: Should the tonsils need to come out, she will need to stop her JRA med (Indocin) four days before the procedure and for two weeks afterwards. Cod liver oil will need to be stopped, as well.

Which is something we will be bringing up today when we make the trek into Boston for an appointment with her rheumatologist....