Archive for April, 2011

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:

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!

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,

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Thank you Jesus for healing our daughter!

Oh Lord, thank you. Lord thank you that you have sustained me every day and in every moment of this journey thus far. I know that this journey is not over, but I claim the victory today! For my God is the God of all, King of all and He has set us free and healed my daughter.

For many are called, but few are chosen
—Matthew 22:14, KJV

Oh Lord, thank you for the call upon my heart. Thank you for your gracious invitation to sup with you, to be called a part of your family, to be called your own. Your word says that if Your people will humble themselves and pray, then You will hear from heaven. Thank You gracious Father for hearing our prayers and healing our sweet daughter.

Mark 10:52 says: “Go,” said Jesus, “your faith has healed you.” Immediately he received his sight and followed Jesus along the road.

My prayer today is that this faith that has been stirred up in our home will continue to grow and bloom. There is so much freedom in a walk with the Lord Jesus. He has gone before me and will help us every step of the way.

Praise you Lord God!

Our Day Today…

Today is 13 days seizure free on the Vigabatrin! I woke up at 4:55am, got myself ready and then woke up Evie at 5:15 to prepare her to go to Boston. My dad came with me and drove us down.

Evelyn was such a good girl. She was so patient for her EEG.  I had been feeling so confident for the last few days and the few moments before they turned the EEG on I felt sick to my stomach.   I didn’t know exactly what I was looking at, but I knew it was ‘better’ from the moment she turned the EEG machine on.  The tech of course couldn’t tell me anything… but I was very hopeful instantly!  Once we were able to meet with the doctor she confirmed that the EEG was wonderful!  She said she saw one small spike, but otherwise was perfect.  She said “I couldn’t have asked for a better EEG!”  I praised the Lord for healing Evelyn and the doctor said to me… “We think it is the drugs that heal these children, but it work for some and not at all for others, I agree that there must be something more, there must be some grace.”

It is only by the grace of God that our daughter is smiling again, that she is cooing, sitting up, learning, smiling, and that her brain has come into complete alignment.

Thank you for your continued prayers.  They are going up on Evelyn’s Vigabatrin to a standard dosage (she was on a very low dose) to keep things at bay.  Please pray this does not affect her development or make her too tired.  She will be on this medicine for 6 months to a year.  Our next follow up in Boston is in two months.  The doctor said that when we wean her off of the drug we will want to watch for a new development of different types of childhood seizures.  Apparently this happens often for infantile spasm patients.  However – I’m believing a healing is a healing and our girl will never have another seizure again!!! Please pray and believe with us!  We are also going to have to make some decisions in the next year or so about vaccinations, I’ll explain more later, but we are seeking the Lord’s direction in this as well.

The doctor said that in a few weeks her immune system would start to rebuild itself… truly not getting back to ‘perfect’ for 6 months from her taking the ACTH.  She said we need to continue to watch for infections and try to keep her away from germs as much as we can.  To those who don’t know, her immune system being compromised is not due to her condition of infantile spasms, it is due to the medicine she just completed.  She has finally finished the weaning schedule and had her last shot this past Friday.  This new drug does not have the side effect of harming her immune system which is wonderful.  Please also continue to pray that the one main side effect of this drug, partial blindness, does not happen to our sweet girl.

We love you all!

What else can be said, but… Lord you are amazing and faithful!!!!! Thank You!


Jill & the family!

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8 Days Seizure Free!

Today is 8 days in a row that Evie has been seizure free!! She has been amazing – babbling, smiling like crazy, playing and simply being her sweet self!

Each day I am completely in awe of what she learns to do in just a day… She’s picking up toys, banging them on her high chair. She’s pushing her body up off the floor again, very well… I don’t think it will be long before she tries to get up on those chubby knees!

Since we can’t bring Evelyn to church right now, Todd and I have decided to take turns each week going with Callen and Annabelle. This past Sunday was my first Sunday back since all of this happened. I kept saying to myself the entire ride there “I’m fine, I’m totally fine.” Then, as we sang the first song of worship to the Lord, the Lord told me to go meet Him at the altar, and so I did. Tears flowing down my face, releasing the pain and fear I have been holding on to. I was so encouraged as my sisters in Christ surrounded me and prayed for me. Thank you Lord for this body of believers and for all of my family and friends who are joining me in prayer. We are not meant to walk this journey alone, thank you for this provision.

While at church, at the altar, a lovely woman whom I care for dearly came to me and shared with me that her daughter had struggled with a serious medical condition as a child and that she had a dream and in her dream her daughter was well. At that moment I prayed that the Lord would give me a dream. After leaving church on Sunday I was delighted to come home and be with Evie since I don’t spend much time away from her. I did not think about that prayer until the next morning when I casually started telling the visiting nurse about a dream I had where Evie was happily playing and crawling. In that moment I said “Oh my goodness, I got my dream!!!” I am so grateful to the Lord that He is so personal that He would touch me and send me this dream. Thank you Lord that you love me this much!

I got word today that Evelyn’s lactic acid levels came back normal! This is wonderful! Praise the Lord! One more step in the right direction!!! I still don’t know any more about the genetic test that came back abnormal, but we do have an appointment with a genetic counselor in Boston on the 28th.

I spoke with Evelyn’s neurologist that is here at home today, she is so encouraging and I consider her a great friend.

Also, Evie starts therapy next Friday, to begin working on the areas that are lacking due to the medicines she has taken. Monday is her EEG in Boston, my dad is going with me, we will leave at 5:45 am!! I am looking forward to this day, for a great report!!

Thank you all so much, I am so encouraged by your prayers and your uplifting words. And I truly thank you for letting me share this journey with you, it helps me walk it, and I appreciate your friendships.


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