Archive for June, 2011

Trusting God is the only answer!

As we near three months of seizure free life we were given some unexpected news today during our appointment with the Genetics doctor.  Just last night I was sharing with my Pastor by email the many examples of God’s faithfulness:

I’ve been reflecting on all the Lord has been doing in our family.  In all the years I dreamt of growing up and having children I never thought I would find myself up against such scary things.  Evelyn, by the Grace of God and ONLY by the Grace of God has been seizure free now for nearly three months.  When I think back to that evening, the night that my life changed, I can barely think upon it – an ache enters my heart.  The dreams and aspirations we have for our children and the feeling that all of it was being pulled from between my fingers, no matter how hard I grasped…  The Lord has brought me to such a place of reliance on Him.  My own flesh has made it very clear how very much we are in need of our savior!  With each passing week we see triumph and trials together.  This bitter sweet existence can be trying emotionally, but this is where I cling to Jesus and His promises for our lives.  The Holy Spirit spoke through me as I wrote Evelyn a letter a few months back and as we are facing another giant with Evelyn’s latest diagnosis I am reminding myself of God’s promise to me to heal her.  That promise stands for Infantile Spasms, it stands for Neutropenia and it stands for anything else that may come her way.  I cling to this promise and to His faithfulness to which He has already shown us over and over again.  He was faithful to bring us to the right doctor at the right time.  He was faithful in the generosity of His people as our church reached out and held us in the palm of their hands along with Christ.  He was faithful to heal her Epilepsy.  For six weeks following Evelyn’s start on Vigabatrin, the epilepsy medication used to treat her infantile spasms, Evelyn would not eat any solid food – at all.  It was so scary, the very thing that would sustain her, she would not take.  Is this not a picture of our walk with the Lord and our constant battle with the flesh?  After much work with the therapist she told me to back off of the feeding attempts and to not feed Evie any solid foods for at least a week.  A few days into this new plan I heard from the Lord.  He told me to go into the kitchen, place her in her high chair, fill her bowl with food and just say the name Jesus!  I sat in front of my baby girl, who had not taken so much as a bite from a spoon in over six weeks and I said the word Jesus.  I said it again, and again, nearly 50 times I would say – all the while holding the spoon about 1 inch from Evelyn’s mouth.  She didn’t hit the spoon, she didn’t grab at it, she peacefully stared at me as I spoke the name of her Savior.  After about 50 times of me calling out the name of Jesus, she leaned forward, opened her mouth and took a giant bite of food.  then another, then another… She has now been eating, three meals a day since that day and it has been two weeks.  HE IS FAITHFUL!

And even after the news of this day, He is still faithful!

The new ‘news’:
The Doctor explained that 95% of our chromosomes are gibberish to the scientific world and only 5% of our chromosomes are actually responsible for the production of our genes.  Of all the people who have deletions, 97% of these people have deletions within the 95% of chromosomes that are gibberish (if that makes sense…).  So, what this means, is that 3% of people who have a deletion, have the deletion somewhere inside of the 5% of chromosomes that are responsible for creating our genes.   Evelyn is in this small category and her deletion is within the chromosomes that create our genes.  This test type has not been around forever so there are likely more poeple than have been reported, however it is a seriously rare deletion, her specific deletion has only been found in 6 other people in all the world.  Of these six people, none of them have a clean bill of health having a mix of medical issues that include seizures, heart abnormalities / defects, kidney issues, and mental retardation.  With such a small set of people with this deletion, and no common thread amongst them, she said she would have no way to predict how this deletion will affect / manifest in Evelyn.

A dear friend of mine reminded me today of Gideon, in the Bible, as he prepared for battle.  He was trusting in what he could see rather than trusting in what the Lord could do.  He was walking by sight, not by faith.  This is what the Lord did to ensure that Gideon knew the Lord goes before us, He wins our battles, He gets the glory!!

(Judges 7:1-8)Early in the morning, Jerub-Baal (that is, Gideon) and all his men camped at the spring of Harod. The camp of Midian was north of them in the valley near the hill of Moreh. The LORD said to Gideon, “You have too many men for me to deliver Midian into their hands. In order that Israel may not boast against me that her own strength has saved her, announce now to the people, ‘Anyone who trembles with fear may turn back and leave Mount Gilead.’” So twenty-two thousand men left, while ten thousand remained.
But the LORD said to Gideon, “There are still too many men. Take them down to the water, and I will sift them for you there. If I say, ‘This one shall go with you,’ he shall go; but if I say, ‘This one shall not go with you,’ he shall not go.” So Gideon took the men down to the water. There the LORD told him, “Separate those who lap the water with their tongues like a dog from those who kneel down to drink.” Three hundred men lapped with their hands to their mouths. All the rest got down on their knees to drink. The LORD said to Gideon, “With the three hundred men that lapped I will save you and give the Midianites into your hands. Let all the other men go, each to his own place.” So Gideon sent the rest of the Israelites to their tents but kept the three hundred, who took over the provisions and trumpets of the others.

With unthinkable odds the Lord went on to win this battle for Gideon and his men and no one could doubt that the credit was anyone’s but the Lord’s!

Evelyn is surpassing unthinkable odds each day…  Approximately 1 in 4500 babies get Infantile Spasms.  I was just reading a few moments ago that the estimates are that 1 in 100,000 people have Neutropenia.  And now this… 6 in over 6 billion!

Surely my God is preparing us for great victory and surely the credit will all be to Him.  Glory be to God!  I don’t know what Evelyn’s life will look like, I don’t know the trials we will face – the answer = Jesus!  God will equip our family each step of the way, as He already has.

Thank you all for your continued prayers.  Evelyn’s numbers for her Neutrophil count are still severely low, nearing zero, and she has no immune system to fight anything.  We are praying for a miraculous healing!  In the coming weeks they are testing our (Todd and I) blood for deletions, Evelyn will have an echo cardiogram to rule out any heart abnormalities and a renal ultrasound to ensure her kidneys are functioning properly.  We are praying and believing for a good report!  After all those tests we will meet again with the Geneticist.

She is so truly special, an appreciation for all my children is rising up and a I have a love for them that is so unconditional!  The Lord gives me just enough light for the step I’m on!  I am trusting Him for our tomorrows.

This past week I came upon a bracelet that said this:  The journey of a thousand miles begins with a single step.  So very true isn’t it…  As the Lord leads, we are the ones that  must take that first step of faith!

In His infinite Love!
-Jill

(Judges 7:1-8)Early in the morning, Jerub-Baal (that is, Gideon) and all his men camped at the spring of Harod. The camp of Midian was north of them in the valley near the hill of Moreh. The LORD said to Gideon, “You have too many men for me to deliver Midian into their hands. In order that Israel may not boast against me that her own strength has saved her, announce now to the people, ‘Anyone who trembles with fear may turn back and leave Mount Gilead.’” So twenty-two thousand men left, while ten thousand remained.
But the LORD said to Gideon, “There are still too many men. Take them down to the water, and I will sift them for you there. If I say, ‘This one shall go with you,’ he shall go; but if I say, ‘This one shall not go with you,’ he shall not go.” So Gideon took the men down to the water. There the LORD told him, “Separate those who lap the water with their tongues like a dog from those who kneel down to drink.” Three hundred men lapped with their hands to their mouths. All the rest got down on their knees to drink. The LORD said to Gideon, “With the three hundred men that lapped I will save you and give the Midianites into your hands. Let all the other men go, each to his own place.” So Gideon sent the rest of the Israelites to their tents but kept the three hundred, who took over the provisions and trumpets of the others.

(Judges 7:1-8)Early in the morning, Jerub-Baal (that is, Gideon) and all his men camped at the spring of Harod. The camp of Midian was north of them in the valley near the hill of Moreh. The LORD said to Gideon, “You have too many men for me to deliver Midian into their hands. In order that Israel may not boast against me that her own strength has saved her, announce now to the people, ‘Anyone who trembles with fear may turn back and leave Mount Gilead.’” So twenty-two thousand men left, while ten thousand remained.
But the LORD said to Gideon, “There are still too many men. Take them down to the water, and I will sift them for you there. If I say, ‘This one shall go with you,’ he shall go; but if I say, ‘This one shall not go with you,’ he shall not go.” So Gideon took the men down to the water. There the LORD told him, “Separate those who lap the water with their tongues like a dog from those who kneel down to drink.” Three hundred men lapped with their hands to their mouths. All the rest got down on their knees to drink. The LORD said to Gideon, “With the three hundred men that lapped I will save you and give the Midianites into your hands. Let all the other men go, each to his own place.” So Gideon sent the rest of the Israelites to their tents but kept the three hundred, who took over the provisions and trumpets of the others.

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What are you missing out on…

A few weeks ago I had the chance to have dinner with a wonderful sister in the Lord.  At the close of our evening she prayed fervently for me and for my walk with the Lord.  As she prayed the wind was howling and my car was literally shaking…  What was going through my mind? Fear!  I was terrifed that the wind was going to turn into something more severe and I wanted to run for cover, to hide.  The Lord had appointed my dear friend to speak words of truth to me,  for me to deposit into my soul, and I missed out on it completely because of fear…

Prior to knowing that Evelyn would be joining our family I remember contemplating “Should we have another baby?  Why test fate… we have two healthy children, shouldn’t we call it a day.”  Even after becoming pregnant I was fearful many times during my pregnancy that something wasn’t okay with the baby, I remember telling close friends of my fears…  And here we are now, I look at my sweet precious angel, who, to the world, is not perfect… but oh is she perfect to me, she has been perfectly formed by the Master Crafstman and I am in complete awe of His workmanship…  Can you imagine what I would have missed out on if fear stopped our family from growing… I can’t imagine my life without Evelyn.  I can’t imagine Callen and Annabelle without Evelyn.  We are a complete and perfect family.

Lord, help me to not be driven by fear.  Your Word says that perfect love casts out all fear, let me receive this truth and walk in it!  Let me walk in freedom!

With that, I ask… What are you missing out on…

-Jill

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Evie’s June trip to Children’s Hospital

We went to Children’s hospital yesterday.  We were met with much traffic and arrived about 20 minutes late for our appointment.  Fortunately, so was everyone else, so they were very understanding.

Hematology
Our first appointment was with the Hematologist.  We have now met with him twice and have been so impressed with the way he treats us and is so thorough when presenting all of the information.  It has been two weeks since Evelyn’s neutrophil numbers were checked, they were 220 at her last visit two weeks ago and they were 100 yesterday.  So, needless to say they have not improved.  It’s interesting that I felt like I already knew they were going to be low again.  In my prayer time I had felt the Lord calling me to be patient and to trust in Him, and to trust His timing.  So when the doctor gave me the news about Evie’s numbers it was as I had expected…  He has her wrapped in the palm of His hands and though I don’t know when this part of her body will start functioning properly, I do know He is faithful and is with me end Evie every step of the way…

The Hematologist said that her blood work otherwise looks very good and that he continues to feel that we are simply waiting for her body to recoup.  He also said that her blood continues to imply that she recently fought a virus but as time goes on, as the neutropenia persists, it is more likely that this is an antibody issues, even if it started from a virus.  He said the antibody issue almost always resolves itself but can takes months to a year to recover.  So – we wait on the Lord!

EEG
After the first appointment Evie had a follow up EEG to confirm that the level of Vigabatrin is still working for her.  This time they used a flat board with large straps that secured her tightly to the board only able to move her head to the left and right and her wiggle her legs and toes… She did so well.  Can you imagine someone strapping you down and performing tests on you and never knowing why are being able to ask why this is happening.  She acts like this is just what babies do…   With barely any protest out of her they were able to get her all setup with all of the EEG leads very quickly.  Then, as the tech’s and I talked about how to try to get her to sleep in her current position we looked over and saw she was, oh so compliant, and was completely out cold.  They were able to get all the readings they needed and after 15 minutes said we needed to wake  her up.  Poor thing was sleep deprived for the test (per their instructions), then once she got herself into a nice deep sleep, we had to wake her.  It got to the point where the tech and I were hysterically laughing because NOTHING we did could wake up Evie.  We were shaking jingle balls over her head, rubbing her arms and legs, slamming the door, taking the giant pieces of Velcro and opening and closing it right over her face… nothing was working.. so the tech took a cold wash cloth and dripped water over Evie’s face – now that is a very uncool way to wake up…  Evie was startled and was about to cry, but I was able to distract her with a game of peek-a-boo.  Once awake they performed a strobe light test to test for light sensitivity and then they were able to unstrap her.  She was such a trooper, as always.  We do not have the results on the EEG, we have a follow up appointment on June 20th with her Neurologist at Children’s, but I know if there was great concern with anything on the EEG I would have heard from them already.

Evie’s Midnight ‘Episode’
We went home after that test, Evie napped on the ride home, and then we melted at Callen’s baseball game…

Upon arriving home before Callen’s game I realized that in the busy morning routine with planning to go to Children’s for the day, I forgot to give Evelyn her Vigabatrin in the morning.  It was now 5:00pm and I did some research online and decided to just give her 7:00pm dose at 5:00pm (right then) and get back on track in the morning.  All of the posts I found indicated that doing that should be fine.  Well….. Evelyn woke up around midnight last night hysteric, I’ve never seen her so hysteric… she was inconsolable, her eyes were glazed over, she could not focus on me or Todd and was extremely ‘floppy’.  We called the neurologist on call and they told us to give her a second dose of Vigabatrin to get her ‘caught up’ on her daily dosage.  They said if we couldn’t get her to ‘come to’ then to take her to the ER.  After some time I was able to get her to play with a ball and grab at some toys.  Then I was able to get her to splash her feet in the bathroom sink with water and I felt as though it was safe to get her back to bed.  She woke up this morning seemingly okay.  I’m not sure if she was having seizures last night, it really did not look like it… I think her brain was just a little over worked and under rested.  It is so important for her to get her naps and stay on a routine as best as possible given that the Vigabatrin tends to make her very drowsy and that lack of sleep can be a trigger for seizures.   Tonight she was able to get to bed by 7:00pm and hopefully she’ll be back to getting rested.

Being a Family Again – Together – All at Once!!!!
We had Annabelle’s kindergarten graduation today and we took Evelyn.  It was overwhelming but I just prayed for the Lord’s protection over her body and for peace for me, and I enjoyed just being a family again, doing a ‘family thing’, together as a family!

We are excited to bring Evelyn back to church soon, either this week or next week is our plan… just depends on how she recoups from the last few days – she had a busy week with therapy on Monday (which, by the way, she was AMAZING at therapy – making leaps and bounds), blood work in Lexington on Tuesday and at Children’s all day yesterday…  I really can’t wait for our church family to see Evelyn, it’s been nearly 4 months since many have seen her and she’s growing so much…  Her neutrophil numbers are basically absent at 100, and she remains extremely immune compromised, but in all of this we know that the Lord can guide us and help us to be a part of our church family again while keeping Evie safe at the same time.   As we take these steps of faith we will walk in wisdom and He will carry us, direct us and give us peace!

Prayers answered and progress being made!
I am constantly reminded of how many people have prayed and are continuing to pray for Evelyn and it is humbling.  She is doing so amazing, she is able to be placed in the crawling position and she’ll stay there for a few seconds now.  She eats crackers and baby ‘cookies’ and is bringing these hand held food to her mouth for the first time ever!  She has been eating one or two servings of baby food each day which she was not doing at all until last week (stopped eating all together two weeks into her medication Vigabatrin).  She is saying sounds like ga, da, and ba again and will even wave bye bye or clap for ‘yay’ on occasion!  Thank you all so much for praying for our sweet love and for our whole family!

Praying that the Lord blesses you and that today you have the opportunity to see God’s hand moving in your lives as we are seeing the Lord move every single day!

Love,
Jill

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