Tonight, not by chance…

I’ve spent a lot of time this evening reading old posts from Evelyn’s Journey.  Tears pouring down my face as I recall the heartache.  I haven’t looked back at those entries in quite some time, months, and find it incredibly interesting that  I have just realized that today is February 24th… and one year ago today I found myself in the emergency room, beginning the journey that has forever changed our lives.  It is hard to imagine how much we’ve been through in just one year.  Tonight I am praising God and thanking Him, with all of my heart, for the amazing progress Evelyn has made.  Thanking Jesus for His hand of protection that has carried us daily!  I know that the Lord has so much more planned for our family and I am eager to walk in it!  Knowing that any plans He has for our family will require us to take active steps of faith, steps we will take daily as we grow closer to Christ!  A heart of gratitude fills me as I recall all of the prayers, the meals, the tears, the love, that everyone poured out so generously during those first weeks and months… There has been no greater picture of the Love of God than that of the outpouring of our friends and family during this journey.   It is not by chance that I have landed here tonight, reading these posts, recalling God’s faithfulness.  It is His reminder to me of how faithful He is and how much He longs to stay in a close relationship with me. 

Lord I thank you for meeting me tonight, for blessing my heart, and of course – for your Faithfulness!

In Christ,
Jill

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What we had in mind…

Looking back at my last post I was so excited, filled with so much anticipation, that Evelyn’s next neutrophil numbers would put her over 1000 and she wouldn’t be neutropenic anymore!  As my Pastor said this past Sunday “Sometimes the plans of the Lord seem to cut short what we had in mind.”  And that is exactly how I must look at our situation, as “the plans of the Lord”.   Today was what some would call a bitter sweet day.  We had great news and not so great news.  The not so great is that Evelyn’s neutrophils (the type of white blood cells that fight infection), have gone down significantly again.  I had hoped that the drop in numbers a few weeks ago was an anomaly and not a pattern, but unfortunately that wasn’t so.  We are looking to be over 1650, three months ago we were at 812, and it was many months we waited to arrive there, and over the last month an a half she was 510, 310 and now 220.  It’s overwhelming, a bit scary, how low will they go, why is this happening again?  We are praying for the Lord to reveal the root!  Last week when I received the news that it was 310 I began to cry.  The kids were concerned and hugging me.  Annabelle asked why I was crying and I just said that Evelyn’s blood count wasn’t what mommy had hoped for, but that we just have to trust God…  She looked at me with such pure faith and said “Well, if we’re trusting God, then I don’t know why you’re cry’n..”  So great, so powerful!  Amen Annabelle!

The Great News!
After meeting with Evelyn’s neurologist today, the plan is to begin weaning Evelyn off of her seizure medication starting tomorrow! That’s a “Praise God and Yikes!” all in one!  In six weeks Evelyn will be off of her medication!  As I talked today about the Lord provision it was so wonderful to have her Dr. encourage me that Evie will do just fine, because “you have your faith.”  So true!  God is not in the business of half healing,  when He heals, He  heals.  Life is life, death is death, healed is healed!  Her brain has been made well, it has come into alignment, God is faithful!  We pray for continued strength, that the things of this world won’t leave us with fret and worry, that our eyes will be fixed on Him, filled with trust and peace!

I am confident tonight as I feel His presence, His consoling warmth, I am assured that He sees me where I am at.  I know that every moment we face as a family, every circumstance we find ourselves in, all of it has passed through the hands of God.  Though it was never His desire for it to be this way, the world is fallen and is fading away and with that comes trials and tribulations, sickness and disease…  But in all of this, as my God is not taken by surprise at all by what we are facing, I know He is holding up our family, carefully navigating us through this treacherous land in order to bring us to safety, to victory, to the other-side!  Now my choice – how would I like to get there, it’s completely up to me, with fret and worry or with faith and trust.  I tell you tonight that my heart is heavy for my baby girl whom I just want to be well, but I will have faith, I will trust, despite the ‘feelings’ that arise and would attempt to take my eyes off of the things of God and all He wants to show me.

Matthew 11:28-30
28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Thank you for all of your continued prayers! We are praying for daily direction and for wisdom!  Please pray for Callen and Annabelle, it has been clear to me that my heart is not the only one that has been heavy… praying for all three of the most special children in my world, and of course for Todd who continues to be the rock in our family, modeling Christ, bringing the peace of God to my sometimes weary soul!

We praise you Lord!
Jill

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Outpouring of emotion…

The most surprising things seem to bring back so much emotion… I remember going to the doctor’s office once, quite a few years after having Callen and Annabelle, for a regular well visit and they gave me a gown to wear.  The gown smelt like bleach and I started to cry…  the smell of that gown reminded me of the days I gave birth to my kids, having worn those same overly bleached, white with blue and pink print, gowns… the day my life changed and I became a mother… 

When Evelyn got sick my family and friends so graciously came and cleaned my house from top to bottom… and when I say top to bottom… I mean tippidy top to bottom!  Even the books on the book shelves were wiped down!  In all of this cleaning my diaper bag was lost.  I have been unable to find this diaper bag for 6 months!  Today as I changed around some furniture to accommodate for the kids new homeschooling desks I found this diaper bag, stuffed inside the shelf of my desk which had gone unnoticed because the desk and it’s shelves had been put up against a wall…  I set the bag aside, happy that I found it, intent on packing it up and using it tomorrow! 

The night is coming to a close and I picked up the bag to start packing it up… I can barely stop the tears from welling up as I am overfilled with emotion.  I looked at the contents of the bag and it was completely normal things you would expect to see in a diaper bag.  I thought to myself…  the morning I packed this bag, I had no idea my life was about to change.  I had no idea that we would end up at the hospital fighting for Evelyn’s future that night… and that by the time we came home from the hospital as we started our ’new kind of normal’, this onesie would never fit again.  I had packed a small portion of dry oatmeal, expecting her to eat it within days… not months…  I packed her socks, expecting her to start crawling soon, pushing around with her little feet… not realizing that within a day of packing this bag she would stop sitting up… she would stop smiling… for sometime… 

Such an emotional night that I did not expect…  These tears remember the heartache I experienced that night and the days to come… but they are also tears of joy and thanksgiving as I am in complete awe of my precious angel and all the Lord has done in her life and in our family’s life.  Just a matter of months ago, to the doctors, her future looked quite grim and unknown…  Today she stood up in the grass, all of her own strength!   She crawls, she laughs, she babbles…  She will look at each family member by name.  I asked her at dinner time what a doggy says and she let out repeated hmmmm hmmm hmmm…  which is what she says when she sees a dog bark! 

Just as my life changed the day I packed that diaper bag, so could it change… tomorrow…  All we have is today, and what a reminder to be sure that whatever I do today invests in that which has eternal value! 

Evelyn continues to do wonderfully, her latest EEG was clean again, marking 5 months seizure free!  They reduced her Vigabatrinfrom 5.0 ml in the a.m. and 7.5 ml in the p.m. to 5.0 ml in both the a.m. and p.m.  Her Neurologist in Boston has said that we can begin a slow wean off of Vigabatrin and she is incredibly impressed with the alert, attentive, smart and capable little girl she is becoming!  So we will go to Boston in 6 weeks for another EEG and as long as all is well we will reduce the medications again.  With regards to Evelyn’s other medical battle – Neutropenia, we are seeing great progress!  At one point, when Evie was well, her neutrophil count was around 3,000.  For many months following her third hospitalization, it hovered between 100 and 300.  Back in the middle of July her numbers were 260.  In mid August they were 510!!  And then, on August 25th, they went up to 840!!!  When we hit the 1000 mark Evelyn wouldn’t even officially be considered neutropenic anymore!!!  And, well… as far as Evelyn missing some genes… clearly my God is amazing and she doesn’t need’em!!! 

Callen and Annabelle are in their second week of homeschooling at the school we call “The school of Mom!”  They want us to get T-Shirts that say that – they are so adorable.  Every day we work on the standard subjects, but above all of that we work on character development.  And in this refining of character, in them and in me, great things are going to happen! 

Thank you all for your continued prayers for our family… we are so blessed to be surrounded by such amazing women and men of God!
Blessings,
Jill

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My Purpose

For so long I’ve lived my life so in love with it’s simplicity, seemingly wanting something deeper, but never knew what was truly waiting for me, setting aside the reward for the feared cost…  People seek out purpose in their lives, I know I have, thinking purpose is caught up in what we do for a living or the title after our names…  Today I realized my purpose, it’s not in a job I’ve held, in the friends I’ve made, in the degree I have… while all those things are valuable and important and play a huge part in my life journey, it’s not my purpose…
My purpose, the one in which I will try to fulfill till the day my time here on earth ends, currently is and will continue to be, to be used by God in whichever way He sees fit to advance His Kingdom and share the Love of Christ to His people.

Proverbs 1:22  How long, you simple ones, will you love simplicity?  For scorners delight in their scorning, and fools hate knowledge.

Dear Lord,
Whether in my marriage, with my children, at the hospital caring for Evelyn, in the grocery store buying bread, sitting at church next to a new friend, having a cup of tea with an old friend – let me be used!  Impart ‘life freeing’ wisdom upon me to share with all those I meet – simply, in love, to share the freedom I have so freely been given…  Let me flee from ignorance and cling to the wisdom and understanding that only You offer.
In Jesus name,
Amen!

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My kids are ministering to me!

Heart and Kidneys

After Evie's Renal Ultrasound - So Happy to get up!

Well, Evelyn was just perfect in Boston last week for her Echo Cardiogram (testing her heart) and her Renal Ultrasound (testing her kidneys).  What a patient little sweetie pie!  She had to lay still on her side for over 40 minutes for the Echo Cardiogram.  My sister came along with me for the long trip andit was great to be with her!  We brought wipes and disinfected each room they brought us to throughout the day – we were getting quite skilled at it :)   After meeting with the Cardiologist and talking with the Ultrasonographer for her Renal Ultrasound we received great news that whatever this deletion may be – it has not affected her heart or kidneys and both reports were perfect!  Praise the Lord! 

Neurology
I had also, a few days prior, met with her Neurologist in Boston who confirmed that her latest EEG was perfect!  She said that we could consider weaning Evelyn off Vigabatrin in as little as 5 months from now… it’s exciting and scary all at the same time!  What do you know – trusting God is a daily choice and one we are presented with over and over and over again… it’s as hard and as easy as that! 

Evie has an eye exam coming up that requires sedation and a special type of contact that is placed on her eye to measure how much she can see (I believe they put leads on her head and can actually tell what activity is happening in her brain as she is presented images – some seriously amazing things!).  However, if Evelyn remains Neutropenic than this is an exposure to germs that I am not comfortable with at this time.  Her neurologist agreed that we could wait on this test depending on Evelyn’s neutrophil counts.

Boldness in Callen!
Last week had some emotional moments with the kids.  One afternoon Annabelle really wanted to use a gift certificate at the mall at build-a-bear, something we’ve been talking about doing for quite some time.  Unfortunately we already had some ‘necessary’ errands to run and I felt it was just too much exposure for Evelyn in one day and too much time away from home (we attempt to stay on her nap schedule to help her body stay on track).  Annabelle started crying, and crying, and crying… at first I was consoling because I understood that this situation is tough and hard to understand at times. As she cried Annabelle was asking why God couldn’t heal Evelyn right away.  This journey has been difficult for us all and we have all had to make some sacrifices in order to help Evelyn stay well.  I do believe consoling Annabelle was the right thing to do… for a time… however her crying began to spiral out of control and we were now in the territory of pity! 

Pity is such a freedom stealer!  When we are telling some one about our woe’s… When we explain how we had been wronged… When we gossip about how we are treated in our family…  When our eyes are so fixed on what we believe is so incredibly unfair…  What are we looking for??? PITY!  It traps us into a place where we feel bad for ourselves rather than praise God for all He does for us, for our freedom, for our lives, for the very air we breathe! 

So, in this, I realized that Annabelle was past the point of consoling and she was now, without really realizing what was going on, searching for pity.  She was frustratingly saying “Why is Evelyn still sick?  This is so boring?  Why can’t we do what I want to do?  This isn’t fair?  My life is boring?”  After a few moments of this I sat down with Annabelle and I firmly said “Annabelle Christine, you are letting your emotions get the best of you and you need to see this spiritual battle that is going on.  God would not want you to focus on all the things you believe are unfair.  He would want you to focus on His Truth f or you.   You are a blessing to this family, and in turn you are blessed to be a member of this family.  This family is a team and we all do our part to make this family work.  You do not have a boring life, you have a blessed life.  You have parent’s that love you, a brother and sister that adore you.  A Savior that loves you.  We laugh, we play, we go to the beach, we make memories.  You need to take a deep breath, calm yourself down, and pray that God would help you through these tough times – He can help you!”  We prayed and she seemed to have some peace about her situation.  I walked away for a few moments.  Upon returning her tears started all over again and this is where the Holy Spirit spoke through my son and it was amazing!!!

As Annabelle cried Callen stopped her and said ”Annabelle, you have to trust God.  It’s like when Mary and Martha wanted Jesus to heal Lazarus.  They wanted Jesus to heal him right away, they were sad that Jesus didn’t come right away.  But it was when God wanted it to happen that Jesus healed Lazarus - he had been in the grave four days Annabelle!”  Annabelle cried again and said “It’s not the same Callen, Evelyn isn’t dead!”  And Callen replied “It is the same Annabelle, you have to see that you have to be patient and wait for God to say it is time to heal Evie.  And when He does it will be so that everyone knows it was a miracle and people know Jesus, just like when Lazarus was healed, people believed in Jesus!”  At this point I had tears streaming down from my face – seeing my son begin to step out in all boldness and share the truth of Jesus was amazing!  He completely gets it!  The story about Lazarus is not just a story about how amazing Jesus is, it’s also about how it affects our lives today!  This story shows the Glory of the Lord and it teaches us how to wait upon the Lord, and what comes from waiting on Him!

Annabelle did not really respond very well to Callen’s claims, she was caught up in her own emotions and couldn’t see the truth presented right to her from the Lord who loves her.  How often are we looking for answers and because our emotions drive our lives we miss that they are right there in front of us!  I told Callen how proud I was of him that He allowed the Holy Spirit to speak through Him and minister to Annabelle and I.  He was gleaming, he said, “It was weird mom, I didn’t even remember the whole story and the people’s names when I was at church the other day, but all of the sudden I remembered it all!”  Was the Holy Spirit not speaking through Callen to impart truth in Annabelle’s life!  Praise the Lord that He loves us so much that He can use an 8 year old boy, willing to be obedient, to share His word!

And then…
A few days later Annabelle and I were looking at our strawberry plants.  She looked at me and said “I love God’s nature mama, like that strawberry, it’s God’s miracle.”  I said, “It sure is honey, that a little tiny seed would make a perfect strawberry!  If you really think about it, it is amazing that it all works out right and becomes a strawberry!”  She agreed and asked if we could pick it.  I showed her that though the front side of the strawberry was red, the back side was still green and we had to wait for it to ripen.  She looked up at me and said “Like what Callen was saying mama, we have to wait for God’s miracle, we have to be patient and wait for God’s time…”  I gave her the biggest squeeze and kiss!  I was so proud of her for receiving the truth that Callen shared with her!  Small strawberries – Big God!

Prayer
Over the week on vacation with family we got the news from the state that the kids health insurance was not approved under the current plan that they have with NH Healthy Kids and that Evelyn had 10 days left of insurance.  I struggled with fear immediately.  I wanted to send out emails and phone calls for prayer.  Only I realized that I myself wasn’t turning to God, I wanted to turn to friends for what I would call ‘consoling’,  however this was probably more likely a search for pity for our scary situation…  I heard from the Lord as I confessed my lack of trust in Him and He told  me to bring this to Him, and so I did in prayer.  It was such a lesson to me.  In this journey with Evelyn it has been so easy to let my prayer life slip away feeling confident that the prayers of others have us ‘covered’…. this is such a lie from the enemy – Prayer is not about having our situations ‘covered’… how foolish of me… it’s about a relationship with Jesus!  It’s about having deep and intimate conversations with my Heavenly Father so that I can learn His voice and learn to listen for His leading, trust His voice and find His direction for my life…  I’m so grateful that He will use any situation to set my perspective straight!

With much prayer and many conversations with the State we are getting closer.  We do not have an answer yet and I have felt the leading of the Lord to now ask for prayer, that the timing of this was in His hands.  I trust Jesus!  How many times must He show Himself faithful for me to trust Him immediately!  I am told we will hear on Monday and I am patiently waiting upon the Lord. 

Neutrophil
Evelyn had her blood drawn today, it has been a month since her last numbers.  At that time she was 100.  I have a confidence that has come over me today as we prepared for the blood draw.  I just keep feeling confident that her numbers are better… I also know that this confidence is peace that comes from the Lord when you trust Him.  We are in His perfect timing, within His perfect plan, and I will take each step placed before me, in obedience, as I wait for all to be revealed!

Blessing to you all,
Love Jill

John 11:1-44
Jesus raises Lazarus from the dead:

The Death of Lazarus
1 Now a certain man was sick, Lazarus of Bethany, the town of Mary and her sister Martha. 2 It was that Mary who anointed the Lord with fragrant oil and wiped His feet with her hair, whose brother Lazarus was sick. 3 Therefore the sisters sent to Him, saying, “Lord, behold, he whom You love is sick.”
4 When Jesus heard that, He said, “This sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it.”
5 Now Jesus loved Martha and her sister and Lazarus. 6 So, when He heard that he was sick, He stayed two more days in the place where He was. 7 Then after this He said to the disciples, “Let us go to Judea again.”
8 The disciples said to Him, “Rabbi, lately the Jews sought to stone You, and are You going there again?”
9 Jesus answered, “Are there not twelve hours in the day? If anyone walks in the day, he does not stumble, because he sees the light of this world. 10 But if one walks in the night, he stumbles, because the light is not in him.” 11 These things He said, and after that He said to them, “Our friend Lazarus sleeps, but I go that I may wake him up.”
12 Then His disciples said, “Lord, if he sleeps he will get well.” 13 However, Jesus spoke of his death, but they thought that He was speaking about taking rest in sleep.
14 Then Jesus said to them plainly, “Lazarus is dead. 15 And I am glad for your sakes that I was not there, that you may believe. Nevertheless let us go to him.”
16 Then Thomas, who is called the Twin, said to his fellow disciples, “Let us also go, that we may die with Him.”

I Am the Resurrection and the Life
17 So when Jesus came, He found that he had already been in the tomb four days. 18 Now Bethany was near Jerusalem, about two miles[a] away. 19 And many of the Jews had joined the women around Martha and Mary, to comfort them concerning their brother.
20 Now Martha, as soon as she heard that Jesus was coming, went and met Him, but Mary was sitting in the house. 21 Now Martha said to Jesus, “Lord, if You had been here, my brother would not have died. 22 But even now I know that whatever You ask of God, God will give You.”
23 Jesus said to her, “Your brother will rise again.”
24 Martha said to Him, “I know that he will rise again in the resurrection at the last day.”
25 Jesus said to her, “I am the resurrection and the life. He who believes in Me, though he may die, he shall live. 26 And whoever lives and believes in Me shall never die. Do you believe this?”
27 She said to Him, “Yes, Lord, I believe that You are the Christ, the Son of God, who is to come into the world.”

Jesus and Death, the Last Enemy
28 And when she had said these things, she went her way and secretly called Mary her sister, saying, “The Teacher has come and is calling for you.” 29 As soon as she heard that, she arose quickly and came to Him. 30 Now Jesus had not yet come into the town, but was[b] in the place where Martha met Him. 31 Then the Jews who were with her in the house, and comforting her, when they saw that Mary rose up quickly and went out, followed her, saying, “She is going to the tomb to weep there.”[c]
32 Then, when Mary came where Jesus was, and saw Him, she fell down at His feet, saying to Him, “Lord, if You had been here, my brother would not have died.”
33 Therefore, when Jesus saw her weeping, and the Jews who came with her weeping, He groaned in the spirit and was troubled. 34 And He said, “Where have you laid him?”
They said to Him, “Lord, come and see.”
35 Jesus wept. 36 Then the Jews said, “See how He loved him!”
37 And some of them said, “Could not this Man, who opened the eyes of the blind, also have kept this man from dying?”

Lazarus Raised from the Dead
38 Then Jesus, again groaning in Himself, came to the tomb. It was a cave, and a stone lay against it. 39 Jesus said, “Take away the stone.”
Martha, the sister of him who was dead, said to Him, “Lord, by this time there is a stench, for he has been dead four days.”
40 Jesus said to her, “Did I not say to you that if you would believe you would see the glory of God?” 41 Then they took away the stone from the place where the dead man was lying.[d] And Jesus lifted up His eyes and said, “Father, I thank You that You have heard Me. 42 And I know that You always hear Me, but because of the people who are standing by I said this, that they may believe that You sent Me.” 43 Now when He had said these things, He cried with a loud voice, “Lazarus, come forth!” 44 Andhe who had died came out bound hand and foot with graveclothes, and his face was wrapped with a cloth. Jesus said to them, “Loose him, and let him go.”

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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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Back from Boston

Evelyn was such a trooper today.  She is such a blessing and my love for her can’t even be expressed in words.  Callen and Annabelle have become so understanding and have really begun to embrase their roles in helping keep Evie safe.  The Lord is really using this time to show Callen and Annabelle perspective, to learn to look ouside of their wants and desires and put someone else’s needs above their own.  It is wonderful to watch them grow and become closer to the Lord, to eachother and to Evelyn.  I am a blessed woman and love them all so very much!

The first sigh of releif – After our trip, the hematologist called and confirmed that she does not have Leukemia (which is one cause for neutropenia) – PRAISE THE LORD!

After having bloodwork we met with the hematologist.  Her bloodwork showed her neutrophil count or ANC (Absolute Neutrophil Count) was .22 or 220, which is up from .1 / 100 from yesterday!!   He reviewed all of Evelyn’s previous tests as well and said he felt confident that the issue causing her neutrophil to be depleted is either a virus or an antibody issue.  There is certain types of activity in her blood work that are indicative of a body that has recently fought a virus.  He also saw some other activity that you usally see just prior to neutrophil going up.  He was very hopeful and encouraging.  Neutrophil recovery from a virus, he said, can take days, weeks or even months.   If the underlying issue is an antibody problem it generally takes months to a year to recover.    So, moving forward, regardless of whether it is a virus or the antibody, we need to keep on doing what we have been doing to protect her from germs and they will periodically keep testing her levels.  They said that, while her numbers are below 500,  if she has a fever over 101.00 for any reason that it’s a trip to the ER and IV antibiotics.  I asked if we could do bloodwork first to see if the fever was viral or bacterial and he said that unfortunately we can’t.  Though she would not need antibiotics for a viral infection, only a bacterial infection, they cannot wait for test results to come back to begin a course of IV antibiotics.  The risk is too high with how life threatening a bacterial infection could become, very rapidly,  given her condition,  while we would be waiting for test results to come back in.

We left feeling very encouraged and must rest in knowing that the Lord has her in the palm of His hands.  And while we don’t know the timing of her healing, the Lord does, and we can trust Him with that!   It all comes down to trust – wanting to know the outcome before we get there… If I trust the Lord, I don’t have to worry or fret about an outcome – He has it under control and is in control! 

Thank you all for your continued praying, I know I say that a lot, but I mean it each and every time.  Prayer is what is getting us through these difficult times.  God is good, He is faithful!

Love to you all,
The Cote’s!

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Evie’s Neutrophil Numbers

Hello Everyone,

Evelyn had her blood work taken today and the results came back poor.  Her number did not increase over the last eight days, it decreased.  It went from 330 to 100.  They are referring us to hematology in Boston and we are heading down to Boston tomorrow morning.  We are continuing to pray for her protection and for wisdom on how to move forward.

I’d be lying if I said I wasn’t overwhelmed… I’m continuing to keep my eyes fixed on Jesus!  Praying that God will heal her sweet body, renew her body and her strength! I love her so much and I want so badly for her to be okay, I want my kids to be able to cuddle with her and roll around with her.  I want to enjoy her with friends and family and praise the Lord with her at church… Jesus, please hear my prayer… She is so strong and so brave!

For further updates:
During the time that I was in the hospital the first time I kept reading the story of a little boy named Logan Andrew (http://loganandrew.com/Logans_Story.html)  I was so encouraged to hear what they went through, all they overcame, and that I wasn’t the only one who has traveled this same journey.  With all that the Lord has shown me during this time I decided to start a web-site for Evelyn so that others going through what we are going through might find our web-site and learn that the true hope that we all seek only comes from the Lord…  All of Evie’s latest updates will be on www.letfaitharise.com.  I can’t tell you all how much it means that you have continued to join me in prayer for my sweet baby… The Lord has heard us all along and I know He hears us now!

Thank you all so much,
Love Jill

Evie’s Sue’s Updates:  www.letfaitharise.com

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