I have started this email so many times so maybe it means it doesn't need to be written. Marlee Anne is at VBS, Abe just had rescue meds, Mary Elizabeth is being her sweet sweet self, & Michala is resting from yet another blow out seizure. That in itself is enough to make me stress but wait there is more. This email is more for me so that I can get my thoughts in order but I know that some of you want details to keep up and pray specifically. So here goes. Please overlook the rambling if it's all over the place.
Sunday I was blessed by having the opportunity to go to North Covington Methodist for their homecoming. Little did I know that God was once again pouring the strong foundation for me to get through the coming week. I hate not being able to go to church as a family but was glad that I got to go.
My life long friend Terri sang In This Very Room. Whenever I heard that song I would think about the room/church we were in. Sunday for some reason my thoughts went to our home. I was flooded with a peace that yes in the very room where I hold my babies as they are having seizures and having trouble breathing HE is there with HIS joy, HIS love, HIS hope and HIS power. What a powerful message in that song.
Then my sweet friend Julie sang A Greater Yes. I had never heard this song. I am always blown away by Terri, Julie and Leslie's voices but this song just spoke volumes to me. I have always been a song person and love the words of songs.
This entire song spoke to me but here is the chorus. You never pray a prayer, your Father will not answer He can't ignore His child's earnest request While you're waiting and believingFor what you thought was bestTrust God if He says no….. You're still Blessed There must be a greater yes
I needed to hear those words and be reminded that my Father does hear me. I do not understand why things happen the way they do and I really do try to be patient and remind myself minute by minute this is only temporary.
Leslie sang Grace Will Always Be Greater. These words gave me peace. I praise You becauseI am fearfully madeYou formed my frameIn a secret placeAll of my daysOrdained before I breathedWritten in Your bookI needed to be reminded that my children, all 4 were perfectly made by GOD for a purpose.
Sunday night I took Marlee Anne to VBS kick off at FBC. Brooke had created a special needs class so that Mary Elizabeth & Michala could go to VBS. I was touched beyond words that she made that class for them and other special needs children. I know how many times it's easier to let them go unnoticed and how many times they get left out of things because there not always thought of in the general population. Not that anyone means to do it and I am not trying to step on toes here but it does happen all too often. Mike and I both were touched that Brooke thought and took the time to do that. Of course Marlee Anne thought it was the greatest thing ever. However they didn't get to go because of the "sickness junk" going around. With Michala and Abe's surgeries coming up soon we didn't want to risk anyone getting sick.
Marlee Anne decided she would still go to VBS. Monday didn't turn out to be the best day. I noticed she was on the playground all by herself and the girls were playing in another place. I didn't think anything about it though. When I picked she and Carson up and asked how it went she said she felt lonely. I asked her why and she explained that the girls in her class left her out. She said she asked a girl to be her friend, the girl said yes but then went off to play with her friends. When Marlee Anne went over to join them they walked away and ignored her. They are 7 years old! WHY does this petty girl stuff start so young? I hate it for her.
Brooke knew that something wasn't right and called her. After talking to her she asked if she would like to go in the 3rd grade class. She did that on Tuesday and so far so good. She seems to like that better. Each day she has come home sharing something good that she has learned.
She likes Mr. Jason, who the next day turned into Mr. Pastor Jason. She is too funny! OK speaking of Pastor Jason. Carson said his desk is a glass door with bibles as the legs of the desk. Someone please share that story with me. I am sure the door and the bibles have a story to tell.
Wednesday we had an after VBS pool party at Aunt Kim & Uncle Papa's. The kids all had a blast and really played good together. I got to spend some time with my long lost friend Sandie and that was really nice. Such a blessing to be with she and my other friends to catch up.
OK fun stuff aside here are where I need to sort my thoughts. Monday Abe had a very strange seizure. Not one that I can explain very well. Tuesday he had 2 of them. Wednesday he had several. They are not stopping easily with rescue meds and when the meds do stop them it only last 30 minutes to an hour. Last night it did last 2. So now we look at all his seizure meds and pray the VNS surgery gets scheduled soon. Another way of God confirming this is the right decision.
Tuesday I got a phone call from Dr. Shoffner's nurse. I am sure some of this won't make sense and will be confusing. It's confusing for me and that's why I need to get it all out on paper so I have it there to sort through. Dr. Shoffner is the mito specialist in Atlanta that diagnosed Mary Elizabeth. He wants Abe to have a resting metabolic rate test on Tuesday morning. This is at a place we have never been for a test we have never had. I am a little anxious.
Monday Mike and Marlee Anne are taking Michala for limb deficiency clinic at Shriners Hospital in Greenville, SC. They have to leave at 4:00 AM so we decided it would be best for Mary Elizabeth and Abe to stay home. Over the past week Michala has a place on her hip come up. We think it's her hip bone. It's on her good leg. Mike is going to request an xray be done if it's not time for one. We want to make sure it's not out of place or something. Please keep them in your prayers. Praying specifically for good results and a smooth appt. I am sure I will send a reminder prayer request.
Next Thursday we will be meeting with Michala's surgeon that will be doing her VNS. He is an ENT that will put her VNS in her back. We are also going to discuss Salivary Gland Botox Injection to possibly help with her drooling. They say that once we meet with the surgeon the VNS surgery is scheduled fairly quickly.
After we meet with Dr. Shoffner on Tuesday we will set up the appt to meet with the neurosurgeon about Abe's VNS surgery. We are hoping to coordinate some if not all his surgeries at the same time to cut down on sedation.
So many of you have asked about me and been praying for my health. Thank you! I am scheduled for a follow up ultrasound on June 29th and we will go from there. Thank you!!!
One last prayer concern please. We have about $3500.00 worth of unpaid medical bills for Abe that we are appealing with the insurance company. I KNOW that God will provide and take care of this. However having it looming over us is not good for any of us. Please pray that the appeals are accepted and insurance will cover them. The paper work in itself is more than I have time for right now.
OK I am so hoping that this email will give me some added peace and kinda of a release. It will help me get my thoughts in order to prepare for the days ahead. Thank you so much for continuing to pray with us!