We truly appreciate your prayers for Henry and that God would bring, that He would allow, seizures. We need them to come so that the doctors can see the possible triggers, so they can see where the seizures are located and so we all can be made aware of how those seizures affect Henry physically - heart rate, oxygen level, etc. Although Henry hasn't had an official seizure since our arrival on Monday, the doctors ARE seeing results and are getting information that will help us properly treat Henry.
The Therapy Dogs Came to Visit Henry!
This morning, the neurologists rounded and filled me in on the latest readings of the EEG's. Henry's EEG continues to be abnormal. Unfortunately (very unfortunately), Henry is having continual spikes on the left side of his brain. This means he could have a bad seizure at any time. It means he is prone to seizures. It means he is having seizures.
You may remember that Henry recently had two abnormal MRI scans. At first, it didn't seem that the abnormality was the cause of the seizures. It is a common abnormality, from what I understand, and most of the time it goes undiagnosed. As of now, the specialists are thinking that Henry's seizures ARE related to his abnormal MRI, but not to the part that we have seen on the test results. They think that possibly, there are other abnormalities that we just haven't yet seen, or are unable to see, on the current MRI's.
This news is heartbreaking to me, although not devastating. I know that may sound strange and could be hard to understand. As Henry's mom, I knew he was having seizure activity. I'm the one who saw it and pointed it out to doctors. I'm the one who pushed for testing. I knew something was wrong. I had come to terms with the abnormal MRI's, although Mike and I were truly upset with the news when we first found out about the abnormality. I'm not sad that Henry will again be put on anti-seizure medication, because I expected that to happen after this study. I just didn't expect seizure activity to constantly be happening in that sweet little brain that grew inside of me.
It's very hard to think that THREE out of our FOUR babies have had seizures. As their mommy, I have to run away from thoughts of "what if?" or "did I do something to cause these things?". There is nothing I could or couldn't do to change the Girls or even Henry. My head knows that, and really my heart does too. The sting is still there though and it's hard not to feel less-than as a woman and as mother. Why can't I produce healthy children? I know - the burden doesn't just fall on me, and no one in my family puts that on me. It's just a normal thought-process for a Mother.
My Babies snuggling in a hospital bed - this has become a very familiar things for us! One is always missing though. We KNOW where Ellie is and she is more alive than ever!
God now has us longing for healthy baby girl who we can adopt, in His perfect time.
My heart IS broken for Henry because I don't know what life will look like for him in the future. Will he get to play sports? Will he suffer a catastrophic seizure that will debilitate him? Will HE feel "less-than" as a boy, as a man? What will this do to him emotionally - especially in the long run?
Mike has quickly reminded me tonight how wonderfully strong Henry is. Henry is SO very bright, smart, quick-witted, and intelligent. Henry reads incredibly well, especially for his age. He is very strong in math and is reading AR books in the first grade (has been for some time now). Henry is an excellent athlete and really excels in each and every sport he tries! He is a "natural" at so many things but his true loves are baseball and soccer. He is a GOOD boy who loves to give - he will give you his favorite toy, his best pair of shoes, his nicest set of clothes. He gives GOOD GIFTS, and I love that God has placed that in his little heart. It's one of my most favorite things about Henry!
Henry's actions remind me of what a good gift-giver God is and how He gave me such a marvelous gift in Henry! God led us to have Henry. God promised Henry to us, to me. God told me he would be free of NKH, and He followed-through on His promise. God breathed life into us again, in many sweet ways, when he allowed me to experience a typical pregnancy, birth, infancy, and toddler-hood with Henry.
The doctors want us to stay until at least Friday, in hopes of us still capturing some seizure activity. They are also working with us on a plan for home, which would include new medications for Henry. So, Bubbie and I will snuggle in again tonight (he likes me to sleep in the twin hospital bed with him) and will wait out the next two days, hoping that he will have a seizure. If not, it's okay because we have a plan and information has shown up for the doctors to see and analyze. The pressure is off, although we do still appreciate your prayers for seizures.
Several Friends have asked how they can help or what they can do for us. Seriously, Mike and I are truly humbled - CONTINUOUSLY HUMBLED - over the kindness and generosity of those around us. Strangers and friends alike, you love and serve us so well and have done so for a very long time. There is no way we could still be on this journey without your faithful prayers and friendship; without your support, your encouragement, the many meals and snacks and Dr. Peppers you've provided over the years. We are truly grateful. Please know that we DO NOT take you for granted, Friends!!
Ways to Help:
- Pray for seizures in Henry's brain
- Pray for endurance for Henry and for me as we are stuck in this lovely hospital room
- Pray for Conner who is really feeling forgotten and low right now - pray that he would be encouraged and that He would know that He is a treasure to us, to God and to others!
- Pray for our families as they help with the kids, dogs, etc at home while we are away
- If you would like to help with a meal, you can sign up on the meal calendar by going to this link:
- People often ask about gift cards and, YES! Those are wonderful. We are not picky and we are truly grateful for anything the Lord leads you to give or for any way you feel led to love on us.
- For help with medical expenses, tax-deductible donations can be made to Helping Hands (we turn in our bills and they pay towards them directly OR we turn in our medical receipts and they reimburse us with available funds - ALL gifts are ensured to go DIRECTLY towards medical expenses only):
The Ellie Kate Memorial Project
Helping Hands Ministries, Inc.
P.O. Box 337
135 Main Street
Tallulah Falls, GA 30573
706-754-6884 (Office)
706-754-9247 (Fax)
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