Archive for March, 2011

My baby girl is here again!!!

There is nothing like her smile… seeing her glow and smile again brings tears to my eyes and such a sense of peace…

Evelyn has completed 7 days on Vigabatrin as of this evening. Over the last 5 days, she has only had one 10 minute episode that had about 4-5 seizures and that was on Tuesday afternoon. So, 4 out of the last 5 days she has been seizure free!!! Praise the Lord!!!

When I’m walking in fear I find myself afraid to be excited, almost as if I’m acting indifferent to it… the last month and a half have been the hardest times of my life and I’m constantly having to battle the fear of disappointment… But faith however is not afraid to rejoice! And so I do! Thank you Jesus for healing my sweet girl! Thank you that every day I have with her is a gift! I don’t know how the rest of this journey is going to play out, I don’t know the specifics, but I do know the promise – You are faithful!

I was laying in bed with her this morning and she was gazing up at me, making wonderful eye contact, content to just be in my arms, smiling from ear to ear at me. It’s like I have a whole new baby, my baby, the one this disease had tried to take – but my God is bigger, and my baby girl is here again!

She was babbling, smiling, playing with toys and even laughing out loud… Last night, Todd put Evie to bed. As he came out of the room he called me over and the two of us sat in such delight as we listened to her cackle and laugh out loud, by her self, to fall asleep. She would laugh, then pause, then laugh, then pause… I know Jesus was in there playing with her, making her laugh, comforting her. To see her this happy, amidst all the pain she has had to endure over the last month, was indescribable.  Tears of joy silently fell down my face.

Thank you for all your continued prayers, our Father hears them and He answers!!  Evelyn has some bloodwork to do tomorrow.  They said some of her work came back with elevated lactic acid and they want to confirm that it is or isn’t elevated.  If it is elevated then their is a cause and it’s the cause that could be a problem.  Please pray that this will not be elevated during this second test.  They also found she was deficient in B12, if so, it can be easily remedied with a vitamin.   The last finding they discovered was that she has a deletion in one of her chromosomes and they have setup an appointment with a genetic counselor so that they can explain this more.  The Doctor said she doesn’t think this deletion is related to the infantile spasms and that the only thing they have seen with this deletion is some muscle issues.  That is all I know and I really don’t understand it fully.  I’ll post more when I know more.  Her next EEG is April 11th, this will let us see if the progress we are seeing in her reduced seizures also extends to the EEG – our prayer is that the hypssarythmia pattern is gone and that her EEG has normalized!!

I’m sitting on the couch looking at Evelyn asleep in her swing… her chubby cheeks and sweet little hands folded on her belly are so beautiful.  She is perfect.

Love,

Jill

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Vigabatrin, Teething, Cold… oh my…

Despite our efforts to keep all germs away, Evie has a cold :( She’s really being a trooper though. So far, praise the Lord, no fever! Please pray that this cold does not settle in anywhere and cause infection. A fever would mean another stay at the hospital.

Today Evelyn has been such a delight… I never thought I would look forward to normal baby crankiness from teething and having a cold. She’s jumping in her ExerSaucer right now, babbling / whining, and sucking on her fingers while gallons of drool drip down her face…

Though her seizures last literally only one to two seconds and are very easily missed, I have not physically seen any today! Though I cannot look at her constantly, no matter what way you look at it – this is progress! It’s just about 6:00 and we haven’t had a day like today in over a month… Praise the Lord! It is my prayer that today remains a seizure-free day and the days to follow are too… I feel like I’m on the edge of my seat, staring at her face… this is where my trust must continue to be in the Lord. It is impossible for me to look at her eyes, every day, all day, I must rest in knowing that when the Lord heals her, He heals her, whether I’m looking or not! I told her today that whatever day is her ‘seizure free’ day, when her healing comes, we will make it a holiday and celebrate God’s goodness every year!

She has been on the Vigabatrin for three days now. The doctor’s plans are to have her on 250mg twice a day and work with that dosing until we see the desired results. A baby can be on up to 1000mg twice a day… Right now she is only starting and is on just the 250mg once a day, we are supposed to add the second daily dose in 4 days with her continuing on the 250mg twice a day…

We have been through so much and I’m learning to take things slow, follow through, and wait on the Lord. I feel like the Vigabatrin is working clinically (clinically being what we can see visually, her actual seizures), the EEG on April 11th will let us know how she is doing ‘inside’.

When I say ‘inside’, I mean this: One aspect of infantile spasms is called ‘Hypsarrhythmia’. Hypsarrhythmia is a very chaotic and disorganized brain wave behavior with no recognizable pattern. It’s this chaotic pattern that is typically associated with mental retardation. There are many seizure medications that work with calming the brain and reducing or eliminating seizures. However their are really only two main drug types that attempt to eliminate hypsarrhythmia and normalize brain waves. ACTH, the drug we already tried, and this drug that we are on, Vigabatrin, is the other.

Todd was able to go to church today and he came home very refreshed and loved… He said it was wonderful to be around our church family again. The kids had a great time too… I asked Callen if everyone missed him, he said “They did mom… they didn’t say they missed me, but when I came in the room they were all shouting ‘Callen, Callen’” It was great for me to see the love that is being poured out not just on Todd and I, but the kids too…

Thank you again to everyone who has blessed us with your help and your prayers. Having nights each week where I can just focus on Evie and the kids and not have to make a meal has meant so much…

We love you all so much! I will write tomorrow night and let you know how her day goes…

Love,
Jill

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Vigabatrin Tomorrow…

Having not seen a significant change over the last few days, we will proceed with Vigabatrin tomorrow.  I am filled with faith, and battling fear all at the same time.  I’m afraid to have faith, afraid to be disappointed.  Thankfully I know – FEAR is not of GOD!  FAITH is of GOD!

The Lord put it on my heart to write Evelyn a letter… to write it in faith, that she will one day read it… when the Lord asks us of something, we ought to listen…

My Letter to Evelyn

My Dearest Evelyn,

From the moment I found out I was pregnant with you I felt ‘life’!  I felt the life that God was growing inside my womb and I felt a new life that I was beginning as I entered into a deeper walk with the Lord.  This new walk with the Lord came as you were being prepared to be a part of our family.  As you were being prepared for us, God had been preparing me to be your mother.  He was preparing me even before I was able to hold you and to look into your eyes.

From the moment I knew that you were to be a part of our family I fell instantly in love with you, never to be the same.  You were destined to change our family and to change our lives.  I wonder if you could ever know the depths of the plans God has for your life.  You have brought love, laughter, tears, joy, peace…  You have caused our family to slow down, take our eyes off the trivial things of this world and fix our eyes on the things above.  You have completely melted my heart and shown me how important it is to have love, the kind of love that only comes from the Father.

You have been the happiest baby I have ever known and have blessed us dearly, every single day.  When you were 7 months old we noticed something different was happening and within a few days found out that you had something called infantile spasms.  As your condition was explained, it seemed like the worst day of our lives, our hearts were breaking… Only we didn’t realize that rather than an end to a perfect picture… it was the beginning of a journey.  The Lord is bringing our entire family on a journey of faith.  My heart is saddened to see you go through everything you are enduring.  But, my sweet Evelyn, you must know that the Lord God, creator of the Heavens and the Earth is using you to change lives, He is with you, you are not alone.  You have eternal purpose that is adding souls to the Lamb’s Book of Life.  You are softening hard hearts, bringing the lost to prayer, causing knees to bow and hands to be lifted up into Heaven.  You have been made for such a time is this, and you are perfectly and wonderfully made.

I write you this letter because I know you will read it…  it is for you to read, because I believe in faith that God has already healed you.  He has gone before our family and is waiting on the other side of this journey with open arms.  The Lord has brought our family to a place where we must rely on His power and His presence to take us through this journey.

My dearest Evelyn, In the name of Jesus Christ of Nazareth, I claim healing over your body, over your life.  You will Read, you will Walk, you will Talk, you will Pray, you will Praise the Lord God with all your heart.

Thank you Lord, that we will over come this adversity, this trial, being ever changed and our faith increased…  Thank you that you will bring us through to the other side and we will all Glorify your name.

My dearest Evelyn, you truly are a miracle…

Love,

Mom

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Latest Plan…

Todd and I met today with Dr. Harini again, she is such a wonderful doctor, she talked with Todd and I and answered our questions for over an hour and a half… she’s one of the top pediatric neurologists in the country and she took the time to care for Evie like she was her own… we were so blessed…

With the exception of a few great days last week, Evelyn is still having between 10 to 15 seizures a day (that I am noticing, quite sure I am not catching them all). With that said, unless things change between now and Thursday, Friday she will begin Vigabatrin.

We feel we asked Dr. Harini every possible question that was on our minds and hearts and feel as comfortable as one can moving forward with the Vigabatrin. We continue to pray without ceasing that we will find and answer for our precious Evie and we pray that this medicine will be it.

Evelyn had her blood drawn today again to fill about 7 viles for testing, she was a trooper… They even had to tape on a little bag to catch her potty and the woman who was doing her testing said, “poor thing, I scared the pee right out of her”… in all of this, we find laughter, taking things one day at a time…

We are grateful that the Lord has protected Evelyn through all of these drugs… she’s been on three anti epileptic drugs and has yet to have a single major side effect. Even on ACTH she did not have any of the major side effects… Thank you heavenly Father for protecting her during this time.

Lord, I know you know how much I love my little girl, how much my heart breaks to see her go through all of these tests… and most of all, I know You love her even more than I do – which is hard to even imagine… I give her to you Lord, please heal her sweet body. As your word calls us to come into alignment with all that you are, I pray that the brain waves within Evie’s body will come into alignment, into perfect peace.

Thank you all for your support – we love you so much.
Love,
Jill

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Off to Boston tomorrow…

2 Corinthians 5:7
For we walk by faith, not by sight.

The past few days has come with a myriad of emotions. On Thursday she had 14 seizures or ‘events’ as they call them. This has been about the amount we have been seeing over the last week or so. Her events are only a few seconds long so I am only able to keep track of the ones I can see happen. On Friday she only had 2 events and on Saturday 3 events. I’ve been excited, elated, hopeful… and today, she’s had at least 7 already… I WALK BY FAITH, NOT BY SIGHT! Today is a constant reminder that I cannot look at the physical world around me and take what is going on around me and use it as my gauge as to how I am doing or how I am feeling… We live in a spiritual world and I must rely on what God says about my circumstances… He says:

Jeremiah 29:11
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Deuteronomy 31:6
Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.”

I am praying for continued strength… I’ve read a few stories of some amazing children who have survived this disease and it brought me comfort, I thought I would share:

Jacob’s Story: http://www.netnomad.com/is.html
Success with Vigabatrin

Eliana’s Story: http://www.charliefoundation.org/ketokids/elianas-story
Success with Ketogenic Diet

Logan Andrew’s Story: http://loganandrew.com/
Success with ACTH

Our appointment in Boston is at 3:00 tomorrow. I’m not sure how they will decide to proceed as we have seen some improvement at home over the last four days… We have the Vigabatrin in hand and will see what the doctor says. Please pray for wisdom on behalf of ourselves and the doctors and for peace for little Evie… She’s a smartie and gets very stressed at the sight of a nurse or doctor…

Thank you all so much for everything,
Love,
Jill

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Change of plans again…

So, after talking with Evie’s doctor and the entire team again, they’ve decided that before they walk away from ACTH, and say it has not worked, they want to be sure they’ve given it a complete try so that we are never left wondering if we kept her on it long enough. So, rather than start weaning tomorrow, we are adding an additional week of the high dose ACTH before weaning. If you read a lot of the success stories on ACTH most saw almost immediate results with seizures stopping within days. The general time frame to measure if the drug is working is two weeks into the high dose and Evie will be at the two week mark tomorrow. One of her doctors, Dr. Harini, said that their is a small percentage of patients that take more time to respond and we want to rule that out before moving onto plan b. 

Our time at Children’s Hospital in Boston was humbling… it really made me step out side of myself and my situation and lift up these poor children to the Lord in prayer. There was one point when I had stepped out of the room while they were putting an IV into Evelyn, it was too much for me to see her be in pain like that, my mom stayed with her. While I was waiting, sitting on some chairs near the elevator a man came down the hall with a large rack of bins, these were transparent bins, sharps containers (the containers that doctors / nurses put used medical needles in). There must have been 30 large containers, each nearly the size of a trash barrel. Each, completely filled with used needles… and I realized, I’m in a “Children’s Hospital” and all those needles have been used on poor, sick, children. It was so humbling, heart breaking and it brought me to tears and to prayer.

I have spent days and days staring at Evelyn’s face, and mostly at her eyes… waiting for her eyes to roll back in her head, track to the side, or for her head to drop or her body to go limp… each time, clicking a button, saying what happened out loud to the video/audio recording, and writing it down. By the end of her EEG study I was exhausted and tired of pointing out all of her ‘flaws’… I realized that I hadn’t really ‘looked’ at my daughter in hours, just examined her behavior. I can’t let this horrible thing, these seizures, define my relationship with Evelyn. I have to look past her condition and look at the condition of her heart. I looked at her today and said, “My sweet Girl, who ever God plans for you to be, whatever that may look like, to me – you are perfect and I will love you and care for you always.” Of course I want the Lord to heal her, but I MUST be okay to walk in and through whatever plan he has for us, I must trust Him.

She is so wonderful, such a blessing, just like Callen and Annabelle. We came home from the hospital tonight. Todd came for a quick visit, with a mask, but is staying at his mom’s for one more night until his follow up appointment with the doctor tomorrow (he has a horrible case of pneumonia). I put Callen and Annabelle to bed and then spent 2 1/2 hours of heaven with Evelyn. She was talkative, rolling over, kicking, squealing and was in mood to cuddle and let me rock her… It was wonderful! I enjoyed her… I stopped counting all seizures, and just enjoyed my daughter!

Again, I cannot express my grateful heart in words…. We are so blessed by everyone’s generosity and especially prayer. So many people are praying for Evelyn – I KNOW God is hearing our prayers and I know He is going to answer. The walk of faith is that I don’t know when and how and I have to leave that to Him.

Please continue to pray that the ACTH does not harm Evelyn, especially with an additional week of the high dose now. She continues to struggle with frustration and screams horribly loud. She does not have tears when she screams, it just seems like anger, so it seems she is not in pain. Please also pray that if we are to move onto Vigabatrin that this drug will work… as I see it, we don’t have a lot more options left to try.

One last thing… There are two types of infantile spasms, cryptogenic and symptomatic. Symptomatic infantile spasms means that there is an identifiable underlying cause, brain damage, genetic issue, etc… cryptogenic means that they cannot identify a cause. Interestingly enough, children who are cryptogenic generally have a better ‘outcome’ long term, being that the symptomatic cases have other underlying issues that need addressing… So far, we have not been able to find a reason for Evelyn’s infantile spasms, so this is good… I heard from on of her doctors this afternoon, Dr. A., that all of her latest blood work and her spinal tap came back negative! This is great news!

We have our next appointment in Boston next Monday…

Thank you again for all your prayers,
Love Jill & family…

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Next step in our journey…

So, after a 24 hour EEG, the doctors came this afternoon and told us they feel the ACTH has not worked… they will begin weaning her off the ACTH on Thursday. They also feel the other two meds, the Phenobarbitol and the Keppra are not effective and they are starting the weaning process for those medications immediately.

The next step is a drug called Vigabatrin… it is a very controversial drug and comes with a specific serious side effect of partial blindness…

We should know within the first few months of the Vigabatrin if it is working. They will monitor her vision through specific testing over the months. If this drug is not successful the next step would be the Ketogenic Diet which is basically a last resort. This diet comes with its own side effects that are similar to that of taking a drug and is not started lightly.

Thank you very much for your prayers and all your support… we feel the prayers… Evie has had a few hours tonight where she’s chatting up a storm and acting like herself, it is such a blessing to see her alert and smiling.

We’ve met some great friends at the hospital and it’s been great to be on a pediatric neurology floor where EVERYONE on the floor has a detailed understanding of her condition…

Well, my roomie here at the hospital has let me borrow her laptop, so I must go… Thank you for your prayers for our sweet Evie Girl and our family!

Love,
Jill

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At Boston Children’s Hospital

We had our appointment with the pediatric neurological at Boston Children’s, they decided to admit Evie for 24 to 48 hours… its looking like it may be more… while the ACTH seems to be affecting her EEG in a positive way, clinically (in real life) her seizure events are actually increasing. She had a few huge ones in front of all the doctors… If I were being honest…. I’m scared… the doctors here are different, a team of 6 come in, spout out some facts, jot lots of notes, and leave… They don’t take great precautions in keeping Evie germ free… we are sharing a room with another family, they are very nice, but have lots of loud company… Please pray for peace and direction as we move forward with additional doctors….

love,
Jill

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Giving thanks, praising God!

Written by Auntie Amy

Hi all,

I can not begin to express the gratitude I feel for all of Evie’s friends, family, neighbors and some people we don’t know who have brought meals, gifts for the kids and groceries. I believe that it is prayer and all those things that is getting them through each day. All of these gifts from all of you is being appreciated by them so much. What is being done, and continues to be done reminds me of the Acts 2 church. Amen.

Thanks again, Auntie Amy

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Evie’s Day today

Evelyn had some blood work this morning, she was very brave… it took three tech’s to get the blood so she was pretty angry by the time they got it… the downside of being an adorable but ‘chubby’ baby… hard to find what they needed through all her chub…

She was pretty tuckered out from the blood work that she ended up sleeping through the entire EEG – thank you Lord!

I met with one of the Doctors for a few moments, Dr. Gupta, but because he is not officially her doctor, he really couldn’t tell me much, he was mostly just letting me know that she did well and encouraged me to keep on, keepin on…

Tonight has been a rough evening for me… I AM walking in faith, it just doesn’t always mean my feelings line up with my faith… She had a few ‘events’ tonight, they call the ‘seizures’, ‘events’. While burping her after she ate, her eyes went all over the place, her head bobbed back and then bobbed forward before she regained her composure… I just keep saying to myself, I walk by faith and not by sight… It is utterly terrifying to watch my little baby ‘leave’ me for a moment…

The medication is wearing on her, she screams for hours and I just pray this drug that is intended on helping her, doesn’t harm her… When she is so upset, she doesn’t seem or act like my Evelyn and I pray for moments that she’ll smile at me and I can be assured she’s still ‘in there’…

I am seeking the Lord and all He wants to teach me through this experience, and in this I continue to pray for His mercy and His healing touch on my sweet baby girl who I love with all that I am…

I’ll send an update when I hear from Evelyn’s doctor on the results of the EEG. We also have our first appointment at Boston Children’s Hospital on Monday at 8:00 am….

Till then,
Jill

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