Prayers for wheelchairs

Ya'll we just ordered a twin tandem wheelchair. If insurance approves it we will have the capabilities of changing the seats out so that we can have any combo of two riding together. This would be wonderful because it would free Marlee Anne up to be the 7 year old that she should be instead of having to push one of her siblings. She could still push someone at times when she wants to but will give her some freedom. Please pray that insurance approves it. I am so excited but trying not to get too excited so I am not disappointed if it doesn't work. It's really awesome and I have attached a picture.

Michala's appt yesterday went well. We loved the doctor. It seems though that he has never placed a VNS in the back. That's a little concerning to me. Also the VNS surgery itself is going to take 3.5 hours and the botox will be additional time. Didn't realize she would be under for that long. We did discuss length of stay. He said most patients stay over night but he was fine with her coming home the same day if we felt ok with that. We know that she will not leave the IV in and keeping her in a hospital or even in the hospital is going to be a job. We are still waiting to hear back about the date of her surgery.

Thanks so much for the prayers for a good and safe appt. Thanks for praying with us about the double wheelchair too. Our "wheelchair guy" David said that there is not much need for it so he doesn't know how easy it will be to get approved. We are having faith that it will just slide right through.

before Abe's surgery

Just some thoughts I wanted to share before Abe's surgery tomorrow. I am not writing this email searching for answers and I almost didn't share it. However it needs to be written for someone. For me. I need the words on paper so that when we are past this I can look back and see how far we have come. I need these words written so that when some mom gets to that phase or season of her life and she turns to that chapter in my book these words will give her hope, peace or a reassurance that someone else has felt the same way she is feeling.

First off thanks so much for the concern for me today with my ultrasound. Everything was clear!!! WOOHOO!!! God is good. I am so glad to have that behind me going into tomorrow.

Today has been terribly hard. I am worn out from battling satan cause he came at me from all angles today. First off I am dealing with being mad that any of this even has to be done. I told Mike that I know what I am supposed feel. I know what I believe. I know the scriptures. I know that God is carrying me through this. Yes I know all that. Still that doesn't take away the anger of the real fact that I HATE putting my baby through this.

That being said I love and I am so very thankful that we are so very blessed to have a wonderful children's hospital so near by where Mike can take us, be with us and then still come home at night and be with our girls. I am thankful that we have family and friends to turn to to help us during this time.

Each time today I felt as though I had hit a wall the phone rang, I got an email or a message, Mike walked in with a cherry limeade, and a dear friend sent a sweet uplifting card with money for breakfast in it. Each time satan stood tall God used someone in a big way to knock him down.

I am also thankful for the inventor of the VNS to give us hope that Abe and Michala will get some relief from their seizures. I am thankful for an amazing neurosurgeon who I feel at peace with leaving my child's life in. I am thankful for a brilliant metabolic specialist that is going to take care in using Abe's muscle and skin to come up with a diagnosis.

I am excited and sad all in one that in 6-8 weeks we will possibly have a diagnosis. I am scared of that diagnosis. I am scared of where it will take us. However I am looking forward to it so that we can move on and possibly open the door to new options for Abe. I am scare that we may not get a diagnosis. We may come up empty handy. Mad because all this has to be done.

Bags are packed and everyone is ready for tomorrow. So please keep everyone in your prayers. Hopefully we will be back home and everyone back together again on Wednesday. Thanks for keeping us in your prayers!!!

With love & much thanks!!!

Karland Jo Curtis is here!

My sweet and beautiful precious great neice has made her arrival. Thanks so much for all your prayers! Karland made her arrival at 12:41 on June 25, 2009. She and mom are doing great. Kale is one of the proudest daddy's I have ever seen. Karland weighs 7lbs 1 oz and is 19".

Update on me!

OK since most of the county knows about my mishap thanks to Mike & Lisa I thought I better update everyone. Last night our dear friends Randy and Lisa brought supper over to us and spent the evening with us. What a blessing to just sit and enjoy time together!

Everything was going great. Michala had her one on one time with Lisa. We ate a wonderful meal. Mike, Randy & Marlee Anne hit golf balls. Then they played Wii golf. Mary Elizabeth was laughing and enjoying the night. Abe pooped and Lisa gave him to me to change. OK she is back to snuggling with him again. Now the scene is set.

I go get everyone's meds and oatmeal. Get Michala fed and go back to the kitchen. I have all Mary Elizabeth's stuff together and go to the laundry room to get a towel. The last thing I remember is opening the cabinet door. The next thing I remember is Mike on the floor with me. The trim had come off the cabinet and hit me in the head. Thankful no blood but I still have the dent in my head and a horrible headache and earache.

Everyone starts scurrying to help me. Marlee Anne is concerned I need to go to the ER. They finally get me to the couch with a bag of frozen blueberries on my head, a wet rag on my face, sprite and pain meds. It was a very long night but finally the dizziness is going away. Nothing like a new baby in the family to make you start feeling better.

Well Lisa thought it was a great idea to put one wet rag in the freezer so that when the other one gets warm I will have a cold one. Marlee Anne goes to give me one out of the freezer and it's frozen solid and she about knocks me out with it. Not meaning to of course.

This morning I finally make it to the bathroom on my own, look in the mirror and gasp at the sight of something purple all over my shirt. Then I kinda remember the bag of blueberries busting and Marlee Anne putting them in a ziploc bag.

What can I say! Never a dull moment. Thankful that Randy & Lisa were here to help out while all this was going on during night time med stuff. Thanks so much to ya'll that have already been praying for me about this! I am sure the dent will go away along with the headache and earache soon. Sorry no pictures to share! It's ok to laugh!!!

Michala's surgery

Michala's surgery has been scheduled for July 22nd. Right now I do not have a peace about it. I have some unanswered questions that I am hoping to get answered today. Please pray that if it's the right thing to do as far as the right surgeon that I will have a peace about it. I think I am allowing myself to get a little no a lot overwhelmed with two of my babies having surgery so close together. Thanks so much for your prayers!!!

Abe's appt

Abe's appt went WONDERFUL!!! Thank you so much for all the prayers!!! The neurosurgeon we love! He was very thorough and very knowledgeable. Took time to answer all our questions which weren't many because he covered almost everything while he was telling us about the surgeries. He will be doing the VNS, lumbar puncture, muscle biopsy and skin biopsy. They will be getting blood and urine samples also while he is asleep. The surgery will take about 3 hours and they will keep him over night so that they know his pain is being managed well along with his oxygen. His office staff was very helpful, and friendly while still being very organized and professional. We left there with the peace we needed about the surgery. His surgery is scheduled for Tuesday June 30th at 7:30AM. Everything with Dr. Shoffner's office is falling into place too. Thanks again for the prayers!!!

weekend

This weekend we celebrated Mike's mom and dad's 50th wedding anniversary. What an amazing thing in this day and age. We had a wonderful time with the family. I am very thankful that we have such a loving Christian couple to influence our lives. They are so very special to all of us.

Today was a very hard day for me. I HATE Father's Day so very bad. I miss my daddy even more on this day. I would like to sleep through. However my children are very blessed to have an amazing daddy that loves them very much. Marlee Anne fixed him brunch in bed. Michala and Abe had a day filled with seizures so it wasn't pleasant for anyone. We are so very ready for their VNS surgeries. Hopefully they will get scheduled soon.

Tomorrow we meet with Abe's neurosugeon. Please pray for safe travels and a good report.

Hope that all the fathers whether your children have hair or fur had a wonderful Father's Day.

Prayer request

Ya'll no matter whether you are for the war or against it these men and women who are fighting for OUR freedom need our prayers.

One of our prayer warriors, Bonnie Gunter's son Ray is in the Air Force and is in Afghanistan. The Taliban hit his base with mortars. Two were killed(Ray knew one of them) and 6 were wounded.

Another one of our prayer warriors & dear friend of mine, Becky Byrum's son Scotty leaves with his squadron from Seattle Washington on Sunday for his deployment also.

Please lift up all our men and women but specifically the families of these two that were killed, along with the 6 that were wounded. Please remember Ray and Scotty also!

Thanks so much for joining us in prayer on this!

Abe's appt

Most days I go through life looking at everything as if it's a gift. I thank God for each one of them. Some days, thankfully rare, I am hit with WHY ME? Not so much that I am too good for all this to be happening to ME but it's hard to watch my children suffer. It's hard struggling and searching to find answers to something that will help. This afternoon as I was having my meltdown after we got back from the morning appts Mike walks over and just holds me. Then he sits with me and listens to every sob, every cry, every scream and every longing. He doesn't try to solve it. He doesn't tell me it will go away. Instead he says, well you know God gives special children to special people. We both dislike that saying so very much because we both know that we are no more special than any of God's other children. So of course I bust out laughing. Then he goes on to share his feelings. Surprisingly enough they are many of the same feelings I am having at the moment. Man is it nice to know I am not in this alone with these feelings. He said you know it's like running a never ending marathon. He is so right. Sometimes you have to stop, grab some nourishment and keep on running. Sometimes we have to stop and refuel, regroup and get back in the game, back in the pack and keep running. I always think just keep swimming.

Today when we met with Dr. Shoffner I was taken back 16 years ago when we started on this journey with Mary Elizabeth. She was 9 months old. It was long and hard. It hit me like a ton of bricks and I wasn't ready for it. I thought I was prepared. I mentally put on my bulldog skirt to help me feel strong. I took a deep breath and tried to take in all the words, all the information. I don't do well with "what ifs" and right now that's where we are and where we have to be until more test and more results start coming in. I was thankful that the technology is leaps and bounds ahead of where it was 16 years ago. All of this means more testing for Abe. Along with his muscle biopsy and lumbar puncture they will do a skin biopsy, blood and urine test. Two more things I think that I am forgetting. We may even find out more about Mary Elizabeth's diagnosis now if we can track down her muscle tissue and if it was processed and frozen correctly.

We couldn't ask for Dr. Shoffner and his assistant Camille to be more helpful or more wonderful. He is a brilliant man and he took so much time to explain it almost in words I could understand. Camille has been there to walk me through so much of this and will be with us as we coordinate all the things for surgery.

Abe did really well for his RMR test. The results should be back in a few days. I am attaching a couple of pictures of him during the test. I was thankful that I got to hold him through it. It really stressed him and we are having a hard time getting his seizures stopped.

The most wonderful part of my day was a delicious breakfast at Mimi's Cafe with my two favorite boys. I tell ya'll what, I am a stress eater and I am surprised I don't weigh 200 lbs. It was a wonderful meal though. The restaurant reminded me of Tony's at Magic Kingdom. The food was unlike any other. Lots of neat and different things on the menu. A nice time to regroup in between appts.

It's about time for Abe to have some more rescue meds so I better run. Thank you so much for your prayers! Thanks everyone for the uplifting messages that I received throughout the morning. What a way to get us through! We even received some info on a tandem wheelchair. Woohoo!!! We will be checking into on Friday when the wheelchair rep comes.

Thanks again for all the prayers. In case I don't get to update again before Thursday please pray for Michala's appt with the surgeon.

Michala's appt

Michala's appt went great! No tumor or cyst on her hip!!! PRAISE GOD! This is a "C" mom's biggest fear and biggest relief! Thank you Jesus! They did lots of xrays to make sure there was nothing there. The problem is that she has a shallow socket so it's making her hip poke out instead of sitting low enough in the socket. They don't think this is what is causing her pain though. She will possibly have to have surgery on it but they said not right now with her seizures being so bad.

No new info on the hospital closing. However the sweet Shriner I talked to a couple of weeks ago said their last meeting seemed promising.

Thank you so much for the prayers for a good appt and good results!

Please keep our friend Emily and her precious baby in your prayers. They were going to break her water in just a few minutes so maybe as I am typing this she will be having that sweet baby boy!

Thanks again for all the prayers and support! Tomorrow morning Abe has his RMR test and then his appt with Dr. Shoffner the mitochondrial specialist. Please keep Abe is your prayers that he will be able to endure the test so that we can get some accurate results from it.