Archive for category Evelyn’s Journey

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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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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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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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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Trip to Children’s Hospital tomorrow…

Hi Everyone!

Praise the Lord Evie’s numbers were up yesterday.  As of yesterday her neutrophil number was .33, it doubled from two days prior.  Once she hits the .5 mark she will only have ‘Neutropenia’ and not ‘Severe Neutropenia’.  We’ll take it!  A step in the right direction!

First Eye Exam
Evie has her first eye exam tomorrow at Children’s Hospital because of the drug Vigabatrin that she is on.  Vigabatrin comes with a risk of partial blindness in the peripheral vision.  They perform a special eye exam to get a benchmark so that in the months to come they can re-test her vision and make sure things aren’t changing.  We’ve spoken with the office already and they are aware of her compromised condition and have assured me they will take all necessary precautions.  Please pray this goes smoothly…

10 Months Old and Teething
Evie is 10 months old today and she cut her first tooth!  She’s been a little upset today, poor little thing has sore gums :(   It’s amazing how watching her go through something like teething brings me so much joy, because that’s what 10 month old babies do!!!

It’s all in the preparation!
When I think of the battles I’ve read about in the Bible it’s not the size or strength of an army that makes them win, it’s the preparation that leads to victory!  To victory and freedom!  As I entered the hospital with Evie for the second time here in town I found myself spiritually unready.  Though my artillery was the same, the lack of preparation brought struggles.  Having had such a time of intense study and closeness with the Holy Spirit before heading to the hospital the first time I found myself shaken, but not moved.  This time around I fought fear, anxiety, pride, you name it…  As Evie found herself pricked by the phlebotomist after pricking herself I fought feelings of anger and judgment.  I sought what I called ‘justice’ when really I was looking for pity for the situation we found ourselves in.  It took quite a few days for me to realize what was going on when I sought the Lord.  He was so gracious and in it all gave me opportunity to share His goodness with others.  He even brought me a woman, who drew Evelyn’s blood, that shared Christ with me!  A reminder of what it is all about!

Oh Lord I pray for your forgiveness.  You’ve told us to be ready, to dress ourselves in your character and to conduct ourselves in your likeness so that the people of this world may know who you truly are.  Thank you for being such a gracious God that you would still allow me the opportunity to rise above and share the Good News!  Thank you for protecting Evelyn from any further infection or sickness.  Thank you for taking her fever away.  I pray for continued protection for her as we head to Children’s Hospital tomorrow and continued growth in her immune system!

Love & Blessings to you all,

Jill

 

 

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Neutrophil is heading in the right direction!

Just a quick post – Evie’s neutrophil numbers went from .14 (which equals 140) to .33 (330).  Thank you Jesus!!

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Update on Evelyn…

Hello Everyone,

Just a few weeks ago I was telling Todd that I was afraid that all the Lord had taught me during this time would not ‘stick’, that the things of this world, all vying for our attention, would distract me from the things of the Lord and all He had taught me. I was praying that I would never see with my old set of eyes and that the new perspective the Lord had given me would remain. Well, we are back in the hospital tending to Evelyn and perspective has once again knocked on our front door.

We were on a vacation. This was a big step for me to take Evie out of the home, but I had talked with the lodge, they had promised they did a thorough cleaning. And I was coming armed with disinfectant wipes to sterilize the place before we brought Evelyn through the front door.

As we arrived I took her out of her car seat and she felt very warm. I told Todd I thought she had a fever and he went off to the nearby pharmacy and bought Tylenol and a thermometer. Her temperature was 102.0 and we had been instructed that anything over 100.4 warranted a call to the primary care physician.

After many phone calls to the doctor, and treating Evie with Tylenol over night, we drove back home on Saturday. We have been at the Hospital since then. Upon arrival they took Evelyn’s blood and during that procedure the phlebotomist pricked herself and then Evelyn, contaminating Evie with her own blood. This is one more thing we’ve needed to over come… trusting God that Evelyn was not exposed to any harmful diseases when this contamination happened. While here at the hospital she was treated with strong antibiotics to reduce the fever she had and she was monitored. Evelyn’s fever has been gone for almost three days. However, in the process of treating her fever, some blood work revealed a very low level of white blood cells. It also revealed that one type of white blood cells that are called neutrophil were measuring at 0.03. This reading of .03 equals 30 neutrophil, as I understand it. A normal range of a healthy person is between approximately 1.5 to 7.0 which equals 1500 to 7000. To have a neutrophil level of .03 = 30, is considered a condition called ‘Severe Nuetropenia’. Having ‘Severe Nuetropenia’ means that Evelyn cannot fight any type of infection at all. Over the first few days here at the hospital her levels dropped to zero. We found blood work that was performed on Evie back while she was on ACTH, which suppressed her immune system, and while on ACTH her neutrophil level was 3.0 which is 3000.

As of this morning the neutrophil raised from zero to 50… still much to go, but we are expectant as we wait on the Lord. The plan is to stay here for a few more days while her numbers increase and then to go home and test weekly. During our time home we will have to be even more diligent about germs and keeping Evie safe from germs. Her immune system is worse than it was on ACTH.

Thank you all for your continued prayers. My sweet little one is calling and I must run to her aid!

Love to you all,

Jill

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Joy, such unspeakable Joy!

I can’t believe two weeks have past since my last post… time flies when you are in awe of the Lord! I look at her, and at Callen and Annabelle and Todd, and I really can’t believe all that we’ve gone through over the last months…

God is doing such a fantastic work in our family, He has given me a new set of eyes. Eyes to let go of the things of this world that don’t matter. Eyes to see to the heart of issues that rise up in our home. Such an appreciation I have for my family, for each moment with them, it’s like a gift, everyday. It should have always been like this, but the distractions of life allowed the truth to seem blurry.

When I rock Evie at night and she rubs her little face up against mine and buries her face in my neck I simply melt… Her little hands grab at my hair and my cheeks and she smiles – could there be anything more precious! The other day I fed her a bottle and she looked at me with a big grin and spit up a Huge amount all over me…. it got in my hair, my shirt, my pants, my socks and I was elated! I laughed, I squeezed her, I kissed her and I praised the Lord that I have this little baby who will spit up all over me!

The other day I went for a walk with Evelyn and I came upon an old house. It was a small cape, falling apart in many places. It was dark red and the yard was over grown with patches of dirt and crab grass. The shrubs were out of control and the trees in the front yard were jagged and looked as though they would not likely bloom for much longer… Right smack dab in the middle of this seemingly disastrous yard was a small patch of beautiful yellow daffodils. These daffodils didn’t care that they were blooming in a desolate place. These daffodils were just as beautiful as the daffodils you’d find on a nicely manicured lawn. Daffodils are meant to look a certain way, they grow a certain way, regardless of where they are put… My prayer is, that through this situation, through these circumstances, our family will grow as the Lord has planned and that we will walk in the plan He has set forth for our family, regardless of what is around us and what we can see with our eyes.

Thank you for your continued prayers, Evelyn is doing absolutely wonderful, getting stronger each day. As far as her immune system, other than the six month estimated time line, no one can give us an exact ‘back to normal’ immune system time frame, so we just pray for wisdom in this.

I continue to pray for peace and increased trust in the Lord each day. Now that Evelyn has had a seizure disorder this puts her into the category more at risk for seizure development with high fevers, so in this I must pray and trust God for her protection for now and years to come. We are also going to have to decide how to proceed with vaccinations. There have been some studies linking infantile spasms with a vaccine called DTaP (Diphtheria & Tetanus Toxoids & Acellular Pertussis (vaccine)). The studies I read attributed the infantile spasms to the DTaP vaccine if the child had normal development until time of diagnosis, if all tests including MRI, Spinal Tap, etc came back normal and if the onset of symptoms for the infantile spasms occurred within approximately 1 week from the time of the injection. Some studies said within a week, others said 10 days. Evelyn fits all of this criteria. As best as I can approximate, her seizures began on or around February 1st and her DTaP shot was given on January 21st. When we found ourselves in the Emergency Room in the third week of February and when asked I had estimated that we’d seen the awkward ‘eye tracking’ for about three weeks – give or take. Three weeks would have put us at February 1st (11 days from the vaccine injection), but it is quite likely it was a few days before Feb 1st which would put Evie even closer to the time of vaccination. Even the CDC (Center for Disease Control) says to not give the DTaP any more if a seizure disorder began within one week of an injection. I found out about this proposed link between IS and the DTaP by ‘chance’, reading a blog post one day, and believing that everything is spiritual – I believe this was NOT by chance and that God is instructing me to seek wisdom in this area of vaccines and pray fervently before giving her any more. Please pray with us, it is a big decision to decide to withhold certain vaccines.

We also started Evelyn on a new hypoallergenic formula because we were noticing a trend of hives after some formula feedings. She seems to be doing better, a few hives, but less than before. Praying that the Lord will reveal the root of this for sure.

Callen and Annabelle are really coming along. We’ve had a rough few weeks and we are still working through some emotions that have come up during this time, but I am seeing God move! He is opening the lines of communication between me and my kids and we are having breakthroughs that really matter. Forget the ‘small stuff’ – we are going in deep, getting to the root of problems and plucking them from the garden! God is in the business of wholeness and restoration and my kids are becoming amazing children of God through this process!

Evelyn has adjusted just fine to the higher dose of the medicine. The doctor let us ‘up it’ slowly so that was great. She started saying yaya, gaga, and dada this week and it is the absolute sweetest sound in the world. She is giggling, smiling, rolling over, sitting longer once placed in a sitting position, grabbing toys and jumping in her ExerSaucer! Tomorrow Todd is going to put a chin-up bar in one of the doorways entering the kitchen so I can put a larger style baby swing in the kitchen for when I’m cooking – She’s going to love it!

I started back at the Holy Spirit class I was taking before all of this happened. This class, this God, the only True God, is what has sustained me and I miss time with Him so much. As I picked up my notes to begin again I saw the very last note I had written prior to going to the Hospital with Evelyn and prior to knowing anything was going on, it said:

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It’s embarrassing to say but I never really knew what anointing meant? I basically had surmised that people who were anointed were ‘special’ to God and that it was a type of person rather than an experiential anointing. I am realizing so much time has been lost, wasting time, not truly getting to know what it is I’ve said I believed.
It’s exciting to think that God will anoint me to fulfill a purpose of His. That I can walk in His Power, anointed, to bring about changed lives through Christ!
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In all of this, He knew what I was about to come against. He has anointed me to fulfill His purposes and I am blessed!

Love to you all,
Jill

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