Tuesday, November 03, 2009

signs of my nervous breakdown

Please know that I am laughing as I type this email. I don't want anyone worried that I really am about to have my nervous breakdown. Maybe me laughing about all this is actually one of the beginning signs of my nervous breakdown. I always wondered what that one thing was going to be that pushed me over the edge. Ya'll hang on tight to me when it happens ok?! Don't let me fall!!! This email is going out to several of our list. I apologize for typing one long email to cover everyone.

Summary of this email: According to Abe's muscle biopsy done by Dr. Shoffner, Abe does not have a mitochondrial disease. He has an extremely rare something (disease or syndrome - I am sure he said but I cannot remember) that Dr. Shoffner has never seen in all his years. There is one other case in Boston. He has contacted his colleagues all over including internationally. They are all intrigued and willing to help name this. Oh yes it doesn't even have a name. Remember I am laughing why I type this.

I summarized this email for those of you that are interested in just the basics. OK for those of you that want to read my much needed ramblings please continue with this email.

Today we met with Dr. Shoffner. who is internationally recognized for his research in rare diseases. People from all over the world travel to see him and have him do their muscle biopsies. We only had to drive 1 hour. The best part is that now Mo is with him. Ya'll remember Mo who was in the NICU with Abe when he was born. Then the day Dr. Holt told us Abe was indeed having infantile spasms she walked in the room and told us she was with Dr. Holt. Now in hopes of helping Abe and other children she is working with Dr. Shoffner.

We or I went in there today expecting answers. I have way thought he would say Abe doesn't have a common mito disease but I do think it's some type of mito. Then I fully expected to get a direction and answers as to how we could help Abe. He has been having seizures non-stop for over 2 days. The moon yes, the weather yes & the 5 teeth he is cutting yes. I know all those play a huge factor with him and I continue to remind myself that this too shall pass. So as we sat there we got none of the above.

Dr. Shoffner said as you know we have found large amounts of tryptophan in Abe's urine. He continue to tell us that what they have found with Abe linked to the tryptophan he has never seen before in all his years. He said it's all very serendipitous. That sounds so nice doesn't it. Reminds me of a Lifetime movie. Not sure who I want to play me but I want Sean Connery to play Mike. Just a few days ago Dr. Shoffner received a call from a friend of his who is a specialist in Boston. He asked Dr. Shoffner if he had ever seen a patient with this tryptophan problem. Dr. Shoffner said yes just a few weeks ago. Again he said very serendipitous. While they sit intrigued we sit in shock, I think. I think that's one of the feelings I am feeling now. Several times throughout our meeting he said I hope I am getting my point across about how extremely rare this is. He said you are an extremely rare family. OK you know I am perfectly fine with common. A common cold, common symptoms, common anything.

He asked us what led us to have more children after Mary Elizabeth. Mike explained to him that we wanted more children and there was no reason not to. No one had ever made us aware of a reason not to have more children. I went on to tell him that we were told Mary Elizabeth's mitochondrial disease was a sporadic mutation. I realize that a lot of people think we are crazy for having more children after the first one. There are some people that wouldn't have. Then we went on to tell him that when Michala was diagnosed with Aicardi syndrome we were told that it didn't happen more than once in a family. Plus my wonderful friend MaryEllen said we had to have another child. Then Marlee Anne is born and we thought WOW we can have a typical child that is healthy. Why not have another one? Right? OK ya'll don't have to answer that. I know and have been told by some of my closest friends that they thought we had totally lost it when we told them that we were having another baby. He asked if none of the doctors or geneticist we had seen had never told us not to have more children. No we were never told that. However I want to share now that I fully believe everything happens for a reason. I fully trust and believe this children are God's children created perfectly. Maybe not in the medical eyes, maybe not in society's eyes but in the eyes of us and those that love them they are perfect. We did tell him that had we known we would not have had any more children. We would love not to have the medical, financial and emotional burdens that we deal with daily because of their disabilities. I think of our life without them and realize how unfulfilled and empty it would be. It would have been a mistake for us to take all that into our own hands. So here we sit with our extremely rare family. LOL!!!

OK if you have gotten that far please continue to read this or come back to it at a later time. It is really quite humorous and the reason that Kim & Kendra will never again call us and ask how our appt went. I threw up on them with all of this within a matter of minutes. I was so hoping that would help me process it. Laughing now but don't expect that tomorrow or don't be surprised when it hits me & I am crying about it all.

Well they had just moved into a new office and today was the first time they were seeing patients there. It's a great location, great set up, very nice, clean, comfortable and welcoming. Yes I realize we were going to a doctor office and I am not sure what I just described. We walk in and Dr. Shoffner calls us right back. He goes over everything with us, checks Abe out and we go out to wait for the labs. Michala gets called back first. Carla is the phlebotomist and is wonderful! Last time she took blood from Mike & I and neither one of us felt it. Well that's not Michala's problem. Michala's problem is that she hates to be held down ever since she was held down for chemotherapy access. So Mike takes her back. While she is screaming in the back, yes we can hear it all the way to the front of the building. I bet their neighbors are thinking WHAT just moved in next door. Any way while she is having blood drawn I bag Abe to get his urine. The diaper I take off is soaked so I think it will be a little while before he goes. As soon as I get the bag on he goes so much that it overflows the bag and gets his pants wet. I didn't even have a change of clothes for him. I just lose it right there. I start laughing hysterically. I know the mom is thinking oh my I am about to see a real live nervous breakdown right here and now. Good thing is that mom probably wouldn't think anything of it. I pick him Abe and head to the lab to get a specimen cup. I go to the next room and get the urine from the bag in the cup. Then I am thinking ok I need to get this back to the lab, clean Abe up, clean me up and the room we were just in. I walk back to the lab and Michala is still screaming, flailing about, grabbing Mike, pink tape all around one arm & really giving Carla fits. Give Carla the urine and go to get the room cleaned up. Mo sees me and says no she will get it.

I get back out to the waiting area and sit down on the verge of tears. I just know something is going to trigger it. I had already cried a little when we were in with Dr. Shoffner. As I was sitting there holding Abe while Mary Elizabeth is singing and laughing. Yes she knows nothing is going to happen to her today and she is so very happy. In walks a couple with a special needs child in a wheelchair. The mom sits down and goes oh my look at that double wheelchair I have never seen one of those before. LOL!!! We are used to looks and stares from most people but from them. No I am only joking she was very intrigued by it. Mo even asked if she could bring a mom to see it.

Mike walks out and his neck is bleeding from Michala clawing him while he tried to hold her down for blood work. He said good thing she battled cancer when she was young cause going through chemo now would be really rough. Mo comes out with scratches all over her too I think. She looks at me and says you ok. I honestly say no, no I am not. She says you want some water. Well I crack up. I said Mo water is not gonna do it. She laughs and still hands me some water.

Michala is grabbing at her arms. Yes arms. Carla had to stick her 3 times to get all the blood they needed. Michala kept getting mad and tensing up and she would blow the vein. Mary Elizabeth is still laughing like na na na boo boo and singing to the top of her lungs. Mike said I am taking these two out to the van. Marlee Anne waits with me.

In a little while Carla calls us back for Abe's labs. As she is prepping Abe she says now this is Marlee Anne. I said yes. Marlee Anne goes why. She said well I need to get blood from you too. Well Marlee Anne's face goes white. I really think she is about to pass out. Then she starts sobbing. I mean boo hooing. We get Abe's blood drawn all the while Marlee Anne is crying and trying to figure out a way to get out of this. My phone was in the bag when Mike took the girls out. I can't even call him or send a message to ask everyone to pray for her. I just pray harder with her.

When Carla gets done with Abe she tells Marlee Anne she needs her to give her a sample in the cup. Marlee Anne jumps up and says oh I can do that I need to go. Well we go to the restroom and Marlee Anne does a great job. I am about to bust but remember Mike took the girls out and I have nothing for Abe to be in. I ask Marlee Anne to hold him. She tries but he is too heavy. As I sit on the potty holding Abe, Marlee Anne says you should have taken us out to sit in there chair right out there. The mind of a child. She was so right. Instead I am holding Abe while I potty. I finally get my pants pulled up but Marlee Anne has to zip them. Wash up, grab a paper towel to get the specimen cup and head out. As soon as we walk out the door Mo is there and says oh ya'll still here. I give her the look and say don't even go there.

We go back in and Marlee Anne sits down like such a big girl. She did an amazing job. One stick and she gets 3 vials filled up. She bleeds really fast like her daddy. I was so incredibly proud of her. She was so excited to show her daddy her smiley face bandage. Didn't even get a picture of her first time giving blood.Still not too sure she will be a blood donor. She said that if it will help other people she will do it.

Our plans were to go have a nice supper before heading home. Well the screaming, crying, laughing and the seizures changed those plans. Mike did stop by Cheesecake Factory for take out cheesecake and coffee. YUM!!!

We get home and I get my H1N1 vaccination. Everyone had already gotten theirs so I was glad to get mine out of the way. OK as if all that wasn't enough for one day I remove a child proof outlet cover and blue sparks fly. Then the TV, TIVO and Abe's feeding pump stop. Mike checks the fuse box and nothing is tripped. I put the cover back on and everything comes back on. Not the way that should happen. We get in touch with Uncle Roy and he says do not use that outlet tonight. WHAT? NO TIVO? That's one of my things in life that I would have to try very hard to replace right away if something happened to it. I only have about 5 "things" that are that way and that's one big one. So Mike brings in a HUGE orange extension cord and runs everything into that. LIFE! Sometimes you just got to laugh about it.

If ya'll made it this far through these heart ramblings of mine then thank you. Thank you for trying to understand and walk this journey with us. Thanks for your continued prayers and support.

With love & gratefulness
Kelli
mommie 2 4 incredibly rare and beautiful angels
married to an extremely rare angel (I truly mean that)

Saturday, October 31, 2009

Our Disney vinyl decal


Maria from the Disboards designed this for a t-shirt for us a few years back. I converted the file so that I could cut it to put on our van. I love it! Thanks Maria!


Monday, October 05, 2009

answered prayers!!!







Just thought ya'll might like to see evidence of your prayers being answered. Today we got the wheelchairs in. They are WONDERFUL!!! We still haven't put them in the van yet but Mike measured and we think they will go in OK. In other words we think we can make them fit. We are going to wait until it dries up some.

Just wanted to share some pictures with ya'll. Everyone seems to like them very well. They push really good & fold up really easily. Everything seperate is not too heavy. The double one is heavy to lift with both seats on it but I wouldn't do that by myself any way too often.

This is such a God thing from the way it happened. I received the email from the Mito listserv while sitting in Dr. Shoffner's office. That same week we were already scheduled to meet with David from Mobility Designs about their wheelchairs. I sent the email to Lynda right then. Had I not known about this we would have ordered something totally different. I cannot thank David and Lynda enough for the work they did to get these. I cannot thank the person from the Mito list that sent this out. This is the first tandem they had done. Terry brought them out. He and Lynda both were as excited as I was.

Thanks again for all your prayers!!!

Tuesday, September 29, 2009

MOPS

Well this morning I had the honor of speaking at the Mother of Preschoolers group. It was held at Hebron and I didn't realize it was going to hit me as hard when I drove in the parking lot. The last time I was there was for Terri's funeral. I spent sometime in the car praying before I walked in and a wonderful peace flowed over me. There were about 40 beautiful moms there. I was welcomed and was very excited to be there. I only knew 2 moms there so it was nice to meet so many new people. It was so very wonderful to see Kimberly and Ida.

I have really been praying about this. Kimberly asked me to speak on how being a mother changed me. WOW!!! Someone wanted me to talk about my children. Well ok then. I jumped at the chance to do that. However as I read and prayed about this nothing felt right. No direction I went in. I didn't have a clear direction even this morning. What I had intended to share went right out the window. It was not me talking. I wish I had recorded it because I don't even know if I said any uhs. That's amazing for me. I only cried a couple of VERY brief moments and for me they weren't really cries. Talk about prayers working. They did!

I truly hope that I blessed someone's life this morning the way these moms blessed mine. I was thrilled with the ladies that came up and spoke to me afterwards. Tracy told me about her 2 children and 2 foster children she has. Jennifer told me about her brother who has something very similar to Michala. She also told me about her daughter that has spina bifida. I met Erin before the meeting and she gave me a much needed peace as she shared her story with me.

One of the mentors just hugged me and thanked me for coming. She said I just opened my heart and shared so beautifully. Kimberly I don't know her name but she was sitting at your table. I told her that I had so much I wanted to share but wasn't sure what to choose. She said well God showed you because it was perfect. She went on to tell me not to rethink it and go on about it but to know it was right. WOW! How did she know I needed to hear that or otherwise I was going to go back and rethink it.

Even one of the moms Ashley gave me directions back to Snellville. Which by the way were great directions and I made it there just fine. They were all very nice. They are blessed to have such a wonderful group. Thank you to each of you for welcoming me and allowing me to come and speak. Thanks so much for the wonderful Chili's giftcard. Can ya'll believe I won a door prize. How cool is that!!!

I cannot thank each of you for holding me up and lifting me up in prayer. Several of you commented that if I talk the way I write I would be fine. Well I don't. When I write I can pour my heart and soul into it and cry if I need to. When I talk it doesn't flow quite as well. I was very blessed to have the opportunity to share how God has carried us through 24 years. Thanks to each of ya'll for being there through so much of it!!!

Monday, September 28, 2009

Catching up!

OK this is the very reason I journal every night. If not I get behind and forget things that I wanted to remember or share. I have to go back a couple of weeks.

OK ya'll remember me telling ya'll that my friend took me to supper a couple of weeks ago. Well Sandy and I have been friends since the first day of our freshman year of highschool. Yes almost 30 years. YIKES!!! That's a long time to know me and still love me. LOL!!! We had a wonderful time! She took me out to get my birthday celebration started. Get it started it did. I don't think it has ended yet. Wonder how long I can play the birthday card?

That week we had a couple of appts that I think I filled ya'll in on. Now I will try to catch you up on the other fun stuff.

Saturday I had the Quiet Heroes luncheon. I know I say it every year but seriously one year I am getting a table so that everyone can go with me. None of my friends and family have ever gone with me but at $125 it is kind of hard to invite someone and expect them to pay that amount. Once I get there it's great because all other cancer moms are there and so many of them are my precious dear friends that I love so dearly.

The luncheon was amazing as always. They had some wonderful auction items. The food was very good. The speaker had us all in tears. Our goody bags were overflowing with terrific goodies.

That night Mike cooked my favorite steak on the grill, along with baked potato, mushrooms and salad. It was wonderful! Sunday was my actual birthday so I got to choose where I wanted to eat. Any doubt where I chose? Hendersons! My all time favorite. This is my comfort place. I eat that before and after surgeries or hospital stays. It was so very good! Sunday night our friends came over to eat with us.

Monday I was getting ready to go speak at the MOPS group. Which was rescheduled for tomorrow because of the floods. So would ya'll please pray for me tomorrow morning as I go speak. Please pray that God provides me with the words and peace that I need. Please pray that I get self out of the way so that I can be used by HIM. Thanks so much!!!

Wednesday we took Michala & Abe to the doctor on Wednesday. Mo increased their VNSs and Abe had to get blood work. Oh yes and I had to take the urine samples that I had such a hard time getting from Michala! YIKES!!!

I was concerned about Carla, the person taking Abe's blood because she was taking such a long time deciding where to go. Most times that's a good thing but she seemed very nervous and unsure of herself. Well he didn't even flinch when she stuck him. He had been having lots of seizures and I was thinking that was probably why. Well she took 40 ccs of blood from him. He flowed well and she only had to stick him once! woohoo!!! They both did an awesome job. We were getting ready to walk out of the office and Carla came out and said mom I need to get blood from you and dad. WHAT? Yes I know my children do this all the time but I don't & I do not like it. Mike gives blood all the time so to him it wasn't a big deal. I was so thankful I didn't know about this ahead of time.

I went first and she said deep breath. I knew right away why Abe didn't flinch. It didn't hurt at all. You could not feel it. Amazing! Well Mike came in the lab. He had kept Michala out in the waiting area the whole time so she wouldn't bother Abe. Well when Mike sat down and saw how nervous and unsure she seemed I could see that look on his face. He was also amazed at not feeling it. She really was wonderful!

Wednesday night my wonderful neice and one of my nephews along with their families and my sister brought supper over to celebrate my birthday. I got to pick! It was Wednesday night so ya'll know I picked Hendersons. It was so good!!! I played the birthday card quite a bit that night. I got to feed Karland and hold her all that I wanted to. Usually I don't get to if Debbie and Staci are around.

Thursday we packed and headed to the beach as soon as Mike got off work. The ride was very nice.

Since Christmas I have been saving for an embroidery machine. With my birthday money I think I may be close to getting one. I have been talking to friends that have them and one of my friends has called around and done a lot of checking for me. If any of you have one and have thoughts are advice on it I would greatly appreciate it. I am so excited about getting it but want to make sure I get the right one.

OK now I want to know which one of my wonderful Aicardi mom friends sent the word out to get me all the wonderful cards & gifts that I have been receiving. They are still coming in the mail. I am blown away by ya'll's love and generousity. What a wonderful birthday celebration this has been! I am so very thankful for all of ya'll.

I am truly blessed with a wonderful family and beautiful friends. Thanks so much for making me feel so special and so loved!

Our beach trip!

WOW! WOW! WOW!!! We just got back last night from an amazing weekend at the beach thanks to some wonderful friends of ours. I have to admit this was a selfish trip for me. I LOVE LOVE LOVE the beach. I grew up going to the beach every summer. I have wonderful memories of the beach with my family. We stayed at the same place every year. We even stayed through a hurricane (someone will have to remind me of which one it was) when the beach was evacuated because mama & daddy were friends with the owners. Mama is still intrigued by hurricanes.

I remember loving the beach and the ocean. I remember those times with my daddy so well. So this weekend it made me even more thankful for Marlee Anne to make those memories with Mike and I. There was not handicap accessibility to the beach where we were so Mike & I traded off and spent time on the beach with Marlee Anne. Everyone else seemed to enjoy there time in the condo. Maybe with the exception of Michala. My brother seems to think it was because she didn't have all her toys. To help our neighbors at the beach continue to enjoy their vacation we chose to leave Michala's drum at home. Didn't make for a happy camper in Michala though. This trip did remind me why we started going to Disney. Everyone can enjoy it all together as a family.

The beach and the ocean were beautiful! My ideal time at the beach is to get up around 7, make a pot of coffee, take my chair, book and coffee to the beach and enjoy several hours. Well Friday morning at 7 Marlee Anne is wide awake and ready to go. I sighed and thought there goes MY time. How VERY selfish is that?! However when I got to the beach tears welled up in my eyes and the joy I felt was unreal. Here I am with my anything but "typical" daughter enjoying the sand & sun.

OK bear with me here. We were the only ones on the beach that early playing in the sand. The others were out walking, running or riding bikes. Some were walking their dogs. Soon people started to come out and more and more families appeared. Once again I was reminded of our different family. Here I am on the beach with Marlee Anne while Mike is in the room with our other three children. Please understand I am not complaining, I am not asking for it to be different, I am only saying even here in this perfect setting that God created it's still not right. I would have loved to have had a family picture on the beach but there was no way to get all of us out there. Some of you understand those feelings and can relate, others try to, thankfully God has blessed me with a man that not only understands and relates but also puts me back on the road of joy that I should be on.

So thankful for the time with Marlee Anne. I love having indepth conversations with her about God and why He created this and that. Usually these conversations are always started by my deep thinking girl. We had fun covering each other up in the sand, jumping the waves, finding seashells and building sand castles. I think I better practice before next time because I was quickly informed that Mike builds better sand castles than me. Imagine that!

We had 2 full days of fun like that. Mike even got treated to a round of golf which he really enjoyed. We ate some delicious seafood. Just the change of scenery, beautiful at that!, really helps to rejuvenate you. I am thinking Michala & Abe's seizures were a little better and we should probably consider moving to the beach or at least giving them a break at the beach at least once a month.

Our last day there Marlee Anne decided she didn't want to go to the beach. So off I go with my book, coffee, & chair. OK 2 hours of that and I was ready to take on the world. Seriously I do not know what it is about the ocean and the soothing powers it has to the soul. It truly does though. Once again a reminder that God thought it all through. Whether I think it or not or possibly sometimes question or doubt, it is all perfect in His sight. He makes no mistakes!

Monday, September 21, 2009

Mary Elizabeth & Abe endocrine appt

Wednesday we took Mary Elizabeth & Abe for their endocrinology appts. We took Michala & Marlee Anne with us too. When we got there the waiting room was packed. We tried to get them in the corner away from everyone.

As I was waiting for them to call me to check them in I heard patients being called back to see Dr. Parks. Even though we weren't seeing him that day because I thought he had already retired I was so glad he was there. As we were waiting for vitals to be done I heard Mike say hey Dr. Parks. I was so excited to see him. When Mary Elizabeth saw him she got so excited. He kissed and hugged her and she got the biggest grin on her face. I got to quickly go over some things we were questioning since test were starting to come back. He said he would sit down and go over all that.

The appt went Megan for Mary Elizabeth was quick and easy. She did have to have lab work done though. Abe's appt was longer and Megan went over all the what if's. One thing they are thinking is the possibility of diabetes insipidus. Not to be confused with sugar diabetes. Diabetes insipidus is a condition in which the kidneys are unable to conserve water. However typically your sodium levels in your urine are high and they are not in Abe. Hopefully it's not something he has. If he does it may be something that he is controlling on his own right now. He didn't have lab work done because he and Michala have to go Wednesday to the metabolic specialist. Abe for more labs and both of them for VNS check.

Many of you have asked about their VNS. We have had some times where it has interrupted, slowed down and a couple of times where it has stopped their seizures.

I took Mary Elizabeth to have her lab work done while the rest of them went out. I prayed and prayed for someone that could stick her the first time. NEVER happens. We have to do at least 3 sticks. First time, first try. This lady was amazing!!! I started crying and told her I needed her name and phone number so we could make sure she was there everytime. She was precious!

Mary Elizabeth's thyroid came back low so we increased her synthroid. Thank ya'll so much for all the prayers!!!

Tuesday, September 15, 2009

Life

I apologize for cross posting this message but it was the easiest way to get it out. Thanks for understanding!

I really hate when life just gets so overwhelming that I cannot get my thoughts down on paper or rather computer. Lately life has been overwhelming to me. A lot of it is because I think too far ahead and too many what ifs. I didn't realize there were a good many people not getting emails from me if I send them from my phone. If some of you have already read some of these updates I apologize for the duplicates. To those of you that haven't received them I am so sorry! I will try to do better.

Where should I start? I will start with my precious angel Mary Elizabeth. She has been holding her own and being such a very sweet and patient big girl.

Marlee Anne has also been doing very good. She has been working hard on her school work. Her favorite thing lately is doing projects at night with her daddy. She and Mike have been doing a project almost every night. They both are really enjoying that. They have painted and built a solar system. Caught a catapillar, Connie will have to remind me of the kind. It has been wonderful watching it take it's journey through changing and becoming a butterfly. We are anxiously waiting to see what color it will be. A very neat experience! They have also been doing lots of experiments. Thankfully as of now the house is still standing.

Michala - my sweet girl is still having a tough time. Still 2 really hard seizures a day. The good news is that the VNS seems to have gotten rid of the little annoying ones and cleared some of the "clutter" going on in her head. She still has times when it seems she is having migraines possibly. Survivor clinic should be able to help us answer some of these questions because we are thinking some of this is the after effects of chemotherapy.

Abe sweet Abe! No way in the world did I dream that this little bitty baby that made his appearance last Valentine's Day would.... I cannot even think of a word. So many emotions everyday well up inside of me because of this little life that some how God thought I could care for.

I got head and I thought heart strong to wean him from some of his seizures meds. Ya'll may have remembered my thoughts were if he is going to have hundreds of seizures a day on that many meds then I would rather him have that many off meds. When I started to wean him from the Vigabatrin which I knew would be hard, he started having withdrawals. Just like a drug addict or alcoholic would have. He screamed, cried, had seizures and what I thought could be hallucinations. It was all so very bad. Several times I thought I would quit and put him right back on it. I am so very thankful for strong friends that supported me through this and said that I could do it. And even when I couldn't they said it's ok. I did end up increasing his Vigabatrin again because he started having seizures again that make him stop breathing. He is on a lower dose than he was so that's some success. Once he settles down some and his body is ready I will try to decrease his phenobarbital.

This life can be so incredibly hard sometimes and I am so very thankful for God's reminder that He is always there with me and never leave or foresake me. I see that through the people He has surrounded and blessed me with in my life. I apologize for being a ME person lately. I strive hard to be a good person, support others and lately that hasn't happened because I have been drowning. I was reminded that when I get these feelings out it helps me heal and go on so much better.

I am so thankful for the friends in my life that have stopped and said hey you need a minute, you need some time, take it and let's do something. I am so thankful that Mike notices those times I am that way and supports me through them. As a family we got to go to the Fuzz Run and had a great time getting out together. That evening we got together with 2 of Michala's Aicardi sisters and had a delicious dinner together.

Sunday my sweet friend took me to the Yellow Daisy Festival. I had a blast!!! LOVE LOVE LOVED it!!! I haven't been in years. It was great to spend some quality time with my friend and get out. The plan was to take all the kids but Mike said no let them stay with me. I have a hard time leaving them especially when any of them are not doing well but I have to say I did enjoy it.

Monday night I got treated to a wonderful meal out with another dear friend. We sat and ate. Took our time and chatted. We even went to Scoops for coffee. It was such a peaceful and very refreshing night.

After those 2 days I am ready to tackle the week. Tomorrow I have a dentist appt for the permanent filling to go on. Then Mary Elizabeth and Abe have endo appts. We thought that those appts would be quick and easy but because of the way some of Abe's test results have come back they may lead to more endocrine problems. We will be discussing some of that tomorrow.

Ya'll have been patient with waiting on test results and I thank those of you that have been concerned and have asked about them. Thank you to the prayer warrior in my life that was there praying when suspected results started coming in. Your words were very comforting and I thank you!

About a week ago I was told that some of the results were coming back. Then yesterday we received the report. I have not even counted how many pages it is but it's huge. Most things have come back negative or normal. Some things have come back questionable and concerning. Abe will have further test done to see if we can find a directions to go in. Mary Elizabeth & Michala will also have some test done to rule out some possible links so they will know which directions to go.

I asked what I should tell people and I was told to say that Abe is a very special little boy (no surprise to me there! LOL!!!) and he is very complex. This is a complicated process. Therefore this is going to take some time. Hopefully some of the test can be clarified soon with testing that will be done next week and we can at least help him with some of those things.

So as I take a deep breath and go back downstairs to take care of my babies I ask that ya'll pray. Please pray for guidance for the brillant specialist we have working on all Abe's stuff. Pray for the doctors that will be looking into the endocrine stuff tomorrow. Pray for us as a family as we once again feel so very close to something that may help while knowing we may once again hear God say No or Not Right Now. I am reminded by my sweet friends words - A Greater Yes!

This is NOT our life. This is not why God has blessed us with these children. I am not supposed to struggle daily with the Whys and What ifs. PLEASE pray for my heart, my life, that I will once again turn this all over to God and KNOW that HE is the one and only that can do this. He knows what the future holds and I know that He holds my every tomorrow. I am supposed to be in the here and right now. I don't want to miss a thing! As I watch my children struggle with seizures and just the simple things in life like breathing it hurts my heart. My heart literally hurts. I am overwhelmed and want to focus on HIM and let HIM once again carry me.

Thank you so very much for your continued prayers and love for our family! Please continue to pray!!!

Tuesday, September 01, 2009

Save Water Newton PSA

For those of you that don't have our local tv station I thought you might want to watch Mike's commercials for www.savewaternewton.com . Yes I am proud!!!

http://www.youtube.com/watch?v=YXgykARZHZ8&feature=channel_page

http://www.youtube.com/watch?v=Em11wEHU8SI&feature=channel

http://www.youtube.com/watch?v=l_TMFx6YQRw&feature=channel_page

http://www.youtube.com/watch?v=lMZwxBxe2bg&feature=channel_page

http://www.youtube.com/watch?v=Kch5yengPdk&feature=channel_page

http://www.youtube.com/watch?v=D_csD5y0tpE&feature=channel_page

http://www.youtube.com/watch?v=agyEbjXyieM&feature=channel_page

Memories!

Saturday was the 10 year anniversary of my brother Tommy's angel day. It really hit me a lot harder than I expected it to. I had already planned a day with friends in hopes of staying busy. Busy I stayed. I even learned to make a crocheted dish cloth. Ya'll better watch out!!!

Throughout the day a memory would hit me so very hard. I remember one of the hardest times of my life was when he moved to Florida. I thought I would literally die. I missed him so very much. Little did I know what truly missing someone was all about.

I hear his voice in my head and it's like he is right here with me. I can can feel him hug me and my heart hurts. I long for him to know my children cause he would love them so very much! He would surely be competing with my brother Bryant to see who could come and see them the most.

One example for you to know how very much he loved me and loved my children happened right after Michala was diagnosed with cancer. He had just gotten the motorcycle he had always dreamed of. It meant so very much to him and he was so very proud of it. Then Michala was diagnosed. He told my mom he wanted to sale his motorcycle and give us the money to help pay for her medical bills. She told him absolutely not because I would be very upset if he did that and be very sad that he had given it up. The next year we had Michala's celebration of life service and that was the last time I saw him. He died the next weekend.

I still hear him and see him in the spitting image that his son Dylan is of him. I still know his sweet caring heart in his dear daughter Shelby. I am so very thankful his legacy lives on through them. Thanks ya'll for making him proud!

This is one of those things in life that I still don't understand. The only thing I can see is that God needed an exceptional angel there with Him because Tommy was definitely that.

Thank you so much for the words of comfort and prayers that some of you extended to me on Saturday. They meant so very much. Thanks to those of you that asked about him and wanted to hear my stories and memories of him. It was so nice to share with ya'll.

I hope that each of you continue to make wonderful memories to hold on to with your family & friends. I have attached one of my favorite pictures of Tommy. He is fishing with his daughter Shelby.




Saturday, August 22, 2009

GOD is GREAT!

What a day filled with blessings from God!!!

Today I had the priviledge of hosting a shower for Mike's cousin Deneen's daughter Ashlee. WOW!!! What a huge blessing that was. It was so wonderful to spend time with family and with Will's (groom to be) family. Seeing Ashlee grow up all these years has been so wonderful.

I have to thank my dear friends Gail, CAM & JoLynn for great shower ideas. Marlee Anne & I had a wonderful time fixing everything together for it. As we were getting things done this morning she asked if you ask the blessing before you eat at a shower. I told her yes you do. She asked if it was ok if she asked the blessing. I told her of course that would be fine. I know she is my child but I was so very proud and very touched at her sweet words that came straight from her heart. It all turned out really nice I think and it was so much fun.

While the shower was going on the pine straw guys came to the door. They come around every so often but usually won't stop if there are lots of cars. They came up to the door and said Mr. Keith Dalton ask us to deliver pine straw to ya'll. Some how Uncle Papa knows when there is a need and what it is. Perfect timing! I called to tell him thank you and through some texting with Grace found out that they were at Tanger Outlet. After some more tracking I got Aunt Kim and put in Abe's order for some needed clothes. WOOHOO!!! How could that have worked out any more perfect!

After the shower I cleaned up real quick and started supper for Mo & Luke. We were all so incredibly excited about them coming.

Well Michala had been whining and fussing the WHOLE day!!! It had been really really bad! Right at the PERFECT time (if there is one) Michala start having a seizure. She was right beside the refrigerator where we keep one of the magnets for the VNS. I notice this "strange" look on her face so I watch her closely. Sure enough she started into a seizure. As soon as she made the first noise I grabbed the magnet and swipe her VNS. It stopped it!!! As I type this I have tears. I really wish ya'll could feel the excitement I have about this! Something IS working. Not something might be or something could be, something IS working. PRAISE the LORD! God is GREAT is all I have to say! This is the first time the VNS has worked in this way. WOW!!! I still cannot get over it. She slept for a little while afterwards and I am not sure what was up with that. Maybe enough relief to be able to sleep or that the part of the seizure she did have was strong enough to wipe her out. When she woke up she was once again really fussy. Still not sure what all that's about. Maybe just a pre-teen. Guess I can't ask for 2 precious girls to breeze through pre-teen years like Mary Elizabeth. LOL!!! Well it was a HUGE blessing and I will take it.

Right after that Mo & Luke arrived without any troubles finding the house. We had an amazing meal prepared by my amazing husband, wonderful fun & fellowship with them. Mo increased Michala's VNS to 1.25, 1.50 on the magnet and she did just fine. She increased Abe once and then a second time before she left. She got him to the same as Michala. It was really neat because up until now Marlee Anne had not seen her activate their VNS. She was really anxious to see it and ask Mo questions. Mo was great of course and took time to explain it all to her.

Luke loves coffee so it was nice to have someone to enjoy a cup of coffee with tonight. Mo & Luke were great sports and played the Wii with Marlee Anne way more than they should of had to. They seemed to enjoy it as much as Marlee Anne.

Things seemed to be settled down some right now. Well except for Mary Elizabeth singing loudly. She loves when everyone is quiet so that she can be heard. I am praying for great nights with the increases in their VNS and great results tomorrow.

It was such a great day and I truly thank God for each one of the special blessings he brought us today. Before I close tonight I have a huge request for prayer. Tonight I found out that Torianna, our precious little friend down the street that has Cystic Fibrosis, had a fever of 103 and had to be taken to the hospital. She is home now and I don't have any details except that. PLEASE lift up this sweet baby in your prayers! Thanks so much!!!

With love & a thankful heart!!!


Thursday, August 13, 2009

OK this is really long but I have a full heart that really needs to share!

Mike had a conference in Savannah this week and he was sweet enough to take us with him. I have a lot I want to share from this trip but first things first. The most touching and amazing moment to me the entire trip. Those of you that already heard are thinking it was meeting Paula Deen and her family. While that was very special and I will share that with ya'll that wasn't the most special.

If you take nothing else from this note I pray you see how God is still working in our lives. As I sit and think back over this past few days I am blown away by God's love for our family and how he prepared each step of each day.

When at home it's easy to focus on the seizures, medication and all medical stuff. This trip was much needed and way pass due. I realized this week it has been since Iowa that we have had time for just us to be away like that. It was such a blessing and time to regroup and refill.

I have always admired Mike as a business man because he carries himself the same no matter who he is around. He doesn't change his beliefs to get a job done quicker, easier or better. Each day he walks he allows God to shine through. I believe evidence of the type of person someone is is shown in the friends that they keep. This week I had the opportunity to meet two very special colleagues of Mike's who have gone far past being just colleagues. They are extremely unique men, strong in their walks with Christ and they also allow that to shine through. I have heard Mike speak of Mike Thomas from Henry County quite often. Most times are when Mike is sharing with me that Mike is praying for us. I was honored to get to meet Mike this week.

The other colleague I got to meet was David Battson. David sponsored us in the Ronald McDonald run last year in Iowa and also Relay For Life. He sends word by Mike to let us know we are in his prayers. We are also on their prayer chain at his church. David had planned to come by our room to meet us Tuesday night before he went home to Macon. We missed his call and were already going to Lady & Sons to eat when he got in touch with us. Not long after we were seated David walks up to our table. First off I am very touched that he took the time out of his schedule to come and meet us. After Mike introduces us to him David asked if he could pray for Abe. The tears are flowing now as they did that night as David knelt beside Abe's stroller, held his hand and prayed over his precious body. Is there any more wonderful, unselfish gesture than to put self aside, allow God to flow so beautifully through oneself in the middle of a very busy restaurant. I was so over taken by the moment as I touched David and Abe as David prayed that I have no idea what the rest of the restaurant did. My prayer is that someone was moved that night to question their salvation and their walk. I pray that as David was praying for my precious son that God not only cleansed and healed his precious body but anointed mine to be bolder and braver in my witness and my walk.

Thank you for letting me share that most wonderful moment and memory. Thank you David for your love and boldness for God!

Sunday I posted a question for suggestions for restaurants in Savannah. I had always wanted to eat at Lady & Sons but thought because of the usual wait time we wouldn't be able to go. I didn't want to make everyone wait a long time for me to eat there. Well my friend Rene' told me that if we went to Uncle Bubba's to eat, which we wanted to do any way, they would make us reservations at Lady & Sons. Thanks Rene'! Everyone gave us lots of great tips. Thanks!!!

Monday morning we got up and had a wonderful drive to Savannah. Some where along the way we passed, yes I said passed a perfectly easy accessible Starbucks. Mike thought he was getting away with something. With very little coxing I convinced him to turn in to get me a delicious coffee to enjoy on the way.

Before we knew it we were in Savannah. We checked and our room wasn't ready so we decided to go to Uncle Bubba's to eat. As we were driving along Marlee Anne said the people in Savannah are sure proud of it. I asked her why she said that. She said because look how clean it is. She said there is no trash any where. They really take good care of it.

We had a delicious meal at Uncle Bubba's. Fried shrimp, grits, fries, crab stew, pecan pie and chocolate crème brulee. All of it was yummy! They were very nice and made us reservations for the next night at Lady & Sons.

We called and our room still wasn't ready. We rode around downtown for a little while then decided to head on to the hotel any way. We checked in and he said the room on the river side was ready. We took that and were very excited to get in the room. I have to say that the service at the Westin Savannah Harbor was wonderful! We were very impressed. We always compare service to the perfect Disney service and this definitely held it's own.

Our rooms were wonderful. The view was unreal. Within minutes one of the big container ships came by our window. It was huge. It was so unreal how it had no wake whatsoever. Really neat to see. We saw many of them throughout our stay.

As I unpacked and got us settled Mike and Marlee Anne walked to the convention center to get Mike registered. Mary Elizabeth, Abe and even Michala were loving the heavenly beds and resting well. When they got back Marlee Anne & I went down to the pool. I forgot Mike's swimsuit but not on purpose. I wasn't crazy about putting on a swimsuit and going to the pool. Note to self - buy new swimsuit!!! It only took about 5 minutes for Marlee Anne to make a friend. Camilla Anne (Millie) and her parents are from Gainesville, Florida. They are very nice. Millie is 6 so she and Marlee Anne hit it off right away. Before long I found out that Talmadge was a vendor at the conference. That was a big joke that I was already meeting people from the conference before Mike did.

Millie walked back to the room with us to play a game with Marlee Anne. Mike's friend Mike came by the room to meet us. We had a wonderful time talking and visiting with him. Again shocked and thankful that he took the time to come by.

Mike and Marlee Anne decided to give the ferry across the river a trial run. We wanted to make sure the wheelchairs would fit because the bellboy wasn't so sure. The rest of us finished getting settled in. I wish I had a picture of Marlee Anne's look on her face when she walked back into the room. PRICELESS!!! She was so excited and couldn't tell me stuff fast enough. As we looked across the river that night it was beautiful to see everything lit up.

That night I got a message from Mike's cousin Leslie that Paula and family were going to be at Uncle Bubba's on Wednesday. I sent a message back asking for more info cause I wasn't sure how to find out more.

Abe didn't have a good night. About 5 in the morning I decided to put him in the bed with me. He went right to sleep. Mike and I figured out he had gotten spoiled with the heavenly bed and didn't like the pack n play. The next two nights he slept just fine with me.

That morning bright and early Mike headed to his conference. We got a phone call from Millie's mom Holly asking how she could help us. WHAT? Are you kidding me? She was so very nice. This is a lady that had just met us the day before and was offering her help with whatever. I had already decided I was going to try to make it to the pool with everyone. Well she said she would be glad to come up and help us get down there. We parked ourselves under a cabana by the pool which we soon found out was $50 to rent. They never said a word though so Mary Elizabeth, Michala & Abe really enjoyed the cool breeze under there while I watched Marlee Anne & Millie in the pool and talked with Holly. Later that afternoon when we got ready to go back up to the room Talmadge, Millie's dad helped us back up. Millie was excited to help push someone upstairs for us. I was amazed by the love of God shown from this family.

We ready and waiting when dad got in from his conference. He had a good day but it was nice for him to be back with us. We got to Lady & Sons and had just enough time to walk through the store and take pictures with the cardboard Paula (cause I had no idea what was in store for me) before they called our name. We got seated and had plenty of room for the wheelchairs and Abe's stroller. They were all very nice and helpful here. Marlee Anne & I made it to the buffet first. Marlee Anne got a little of each and was really excited about it all. I fixed Michala's plate so Mike could be feeding her while I fixed my plate. Finally I got to enjoy it after taking pictures, posting them to facebook and texting them out on my phone. Mike got his plate and I don't think we said much of anything until David walked up. That was when once again I was reminded how blessed I am to have a wonderful Christian man that loves me and our children unconditionally. I was reminded of the important things in life.

Several times the waitresses walked past our table with this beautiful dish that had lattice pastry on top. I asked our waitress what it was. She told me chicken pot pie. WOW!!! Soon the table next to us got one served to them. I got up with my camera and asked the lady if she minded if I took a picture of it. The man sitting next to her laughed. She said of course not. As I thanked her and walked off she said bring me a plate and I will share. I laughed and so oh no I have embarrassed my husband enough. She wasn't taking no for an answer and was already cutting it for me. We laughed and she asked where I was from. Was it my accent that gave me away. I said Georgia and she said oh yes that's why you didn't mind coming over to me. I asked where she was from and she said California. They all worked for the Marines and were there for a meeting.

As we waddled out the door we all took bets on who would get sick first from over eating. Thankfully none of us did. Oh did I forget to tell ya'll what we had to eat. Hoecake, biscuits, fried chicken (the kind my mommie and mom used to make, the kind Mike's granny used to make, the kind you used to stand in line for at the Porterdale hotel), pot roast, BBQ ribs, green beans, squash casserole, mashed potatoes, rice, candied yams, collard greens, mac & cheese, banana puddin, peach cobbler, gooey butter cake and sweet tea with a sprig of fresh mint. OH MY!!!

We got back to the room and all relaxed. The next day Mike headed out and we had a nice relaxing day in the room. Mary Elizabeth & Abe enjoyed stretching out while Michala roamed as much as she could. Marlee Anne & I played every game she brought at least once and some more than that.

When Mike got in we decided to head over to Tybee Island. On the way we stopped by Bubba's. Still at this time I didn't know why Paula's family was going to be there. When we got there this sweet girl asked if we were there for the book signing. OH!!!! I asked was that ok. She said well I have given out all the armbands so you aren't guaranteed to see her but you can try. We decided to go ahead and go to Tybee Island to eat. The whole time I am thinking I am really going to see Paula Deen.

Those of you that don't know she is in our home everyday. We have one of her shows on at least once a day. Mary Elizabeth and Michala love to hear her talk and laugh. They laugh with her. Marlee Anne always wants to make at least one thing we had seen her make that day. It's just a special time for us and it's Paula that brings us together.

We stop at The Crab Shack to eat. Mike had told Marlee Anne about the alligators and she wanted to see them. That's all we ended up doing there before trying to find another place. As we were riding around looking we found where Miley Cyrus was filming her new movie. We didn't see her though.

It started storming and Marlee Anne really wanted to get seashells for Mackenzie. She and I went running out to the beach during the storm and grabbed as many as we could. The storm was getting really bad so we decided to head back to Savannah. As we were riding we saw some dolphins. Mike circled back around for us to get another great view of them.

He dropped Marlee Anne and I off at Uncle Bubba's to see if we could get to see Paula. The girl there said to go on back and see. Once back there this young girl waiting said her sons and Michael just went in the restroom. She was waiting to get a picture with them. They were all very sweet to her. As I walked up to Jamie and Bobby I busted out crying. I wasn't in awe of them. I was touched by their love for their mama cause I know that love all too well. I was touched by their kind spirits that were obvious. They could easily be very snooty. Bobby put his arm around me and said what can I do for you. I held up my camera and through my tears said some mumbo jumbo. They got the message and I got a picture with them. As I turned around there was Michael. He immediately bear hugged me. You know those big real hugs. Not real big hugs but those big "real" hugs. I started crying more because I closed my eyes and I was in my daddy's arms again. He was the sweetest thing. My daddy was too but I am talking about Michael now. He bent down and talked to Marlee Anne. Told her how beautiful she is and was just precious to both of us.

Well the girl that told me they were in the restroom was standing there with her friend and mom. Her mom asked if I was ok and started wiping my make up from my eyes. She said we can't have that when you meet Paula. I told her I didn't know if I would get to because I didn't have an armband but they said I could wait and see. She handed me a yellow armband and I started crying once again. She said I had an extra one. They were the sweetest mom and daughter. They were there for the book signing and were eating at Uncle Bubba's that night. They were going to be at Lady & Son's at 8 in the morning to see if they could get in. I shared Rene's tip about asking them to make reservations for them when they had supper that night. They were all excited. I haven't heard if they got in or not. I am sure it all worked out though with them helping me like they did.

Everything was run just great. There was a very nice lady that worked for Paula that had been standing there talking to us. She was in charge of all the people trying to make it run smooth. Someone asked what she did for Paula and she said publicist and production. Well before we left Kendra told me about an idea she had for Paula to write a cookbook for patients with cystic fibrosis. Patients with CF like Torianna have to have lots of fat in their diet to help keep them well. Kendra said make sure when you see Paula you tell her about that. When Theresa said what she did I thought that's perfect I need to talk to her. I told her about Torianna and about Kendra's idea. She said have her email me. She pulled me to the side and gave me her email address. After hugging her and thanking her we were off to the next area.

Before long there were about 20 of us in the room with Paula and her family. We could take pictures with our own cameras up until we got up there then the professional photographer took them. We stopped to talk to Bobby & Jamie first who were very nice and lots of fun. Before I knew it Marlee Anne was already over with Paula giving hugs and just chatting away. Well it was my turn and of course I wanted a hug too but before I could make it to that I started crying. I couldn't compose myself long enough to tell her what a blessing she is to us. She hugged me even tighter. You know how you do when someone is crying. You hug em and let em get those tears out. Well when I got done I told her about Mary Elizabeth, Michala & Abe and how all of us watch her everyday. By this time Jamie, Bobby, Michael and Uncle Bubba are leaning in listening. Paula is tearing up as is Michael. I compose myself so that I can share with her about Torianna & Kendra. As I share that the mom's of CF patients often use her recipes for the good butter, cream and fat content she brightens up. I am so excited about the possibility of her doing that for this precious families. As I was talking to Paula, Marlee Anne is hamming it up with Michael & Uncle Bubba. I get great hugs from both of them and we are out of there.

By this time it is storming really really bad. I had been texting my pictures and trying to get the word out that I was meeting all of them. So my phone is ringing and I am getting text messages back. It was really funny. I get Mike on the phone and they are heading back in that directions. We didn't think everyone could handle the wait in their wheelchairs. Total time was only about 2 hours and that was waiting 30 minutes on our to go order.

As we are waiting for our order and for Mike and them to get back Marlee Anne wishes she had gotten everyone to sign her shirt. Right them Bobby walks out. She asked him to sign and he smiles that cute little smile and says sure I will. He says come on with me and we will get the rest of them to sign. He takes her right back in there.

Well as we are waiting again I think of a cookbook that I really really need to get signed. All of this happened so fast which is a good thing because if I had prepared I would have been trouble with all the money I spent on stuff to be autographed. Thankfully I purchased 2 cookbooks and that was it. Well I asked ??? I can't think of his name if he would PLEEEEAAASSEEEE take it in and get it signed. He said absolutely not. Paula was trying to finish up and catch a plane. Once again I smiled and asked very nicely please. He said oh ok give it to me. SUPER nice people!!! I thanked him and told him it was my fault for being so flighty with all this.

I have had this dream before. My friend Connie says if there is something you want you visualize it, you believe it and know it's gonna happen and it will. Well Connie I believed it and it did. I was shocked. Thank you so much Leslie for letting me know they were there. I would have gotten home, found out and been so sick. To top off our supper from there we got the key lime pie everyone suggested. Very very good!

Well if that wasn't enough excitement for the trip when we got back to the room I saw a message that my Disney friend from Virginia had 2 more states before being in Vero Beach. OK one of those had to be GA. I sent her a message and at 1:30 this morning they were stopping 15 miles from us. I told her I would check with Mike to see if we could stop by to meet her. For 8 years we have been emailing, texting, posting on our Disney scrapaddicts board, calling each other and supporting each other. This morning I finally got to meet her. I tell you that's right up there with meeting Paula and family. It was great! I have to say thanks to Mike and my sweet children to have the patience to let me do this. Without Mike taking me I would not have gotten to meet Paula & family or Maggie. Thank you Mike!!!

The ride home was good. I have to agree with Marlee Anne it seemed really quick. Thanks Mike for a great trip! Thanks again to David for taking the time to bless us so much! Thanks to everyone for all your prayers for a safe trip. Thanks to God for preparing the way for such a wonderful time. If you made it this far through our trip thanks! I am sure I left out important details but this was a start.

Love,
Kelli

















Wednesday, July 15, 2009

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.

Monday, June 29, 2009

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!!!

It's me again!

right and God sending one of His angels my way.

This morning when I went to the doctor mom came and stayed with everybody. She doesn't do that much any more so Mike called to check on her. He asked Marlee Anne how granmama was doing and she said she looks like she was just dumped. Mike said what? Marlee Anne said she looks like her boyfriend just broke up with her. When Mike told me he was laughing so hard. OH MY WORD that girl. We were all in tears laughing about it.

Tonight Marlee Anne was packing a bag for Abe & I to take to the hospital. She does this everytime someone goes to the hospital. She handed me the bag and said mom look inside. When I did I saw money she had put in there. She said mom I wanted to make sure you had money to get something to drink if you wanted it. PRECIOUS! PRECIOUS!!! She had put her birthday money in the bag so that I would have money while I was at the hospital. That girl and her heart.

She is laying with Abe right now, praying for him. I love to hear her when she doesn't know I am listening. Please say a special prayer for her as she is a big girl while we are gone. She asked me a little while ago how long I thought we would have to be gone. She has hugged me at least a thousand times, told me she would miss us and that she loves me. God IS good!

OK I have put it off long enough. It's time to move forward to tomorrow. Thank you so much for the emails! It's amazing to send out an email and then just minutes later have responses filled with encouragement, laughs and prayers!

Thursday, June 25, 2009

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".










Wednesday, June 24, 2009

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!!!

Monday, June 22, 2009

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.

Sunday, June 21, 2009

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!

Tuesday, June 16, 2009

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.

Thursday, June 11, 2009

life

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!

A parent's greatest joy!

I think my prayer for my children to be saved started before they were even born. Mike and I both remember the day we were saved very clearly. We try to live our lives so that our children and others see Christ through us. There are so many times when we falter and our children see those times too.

For so long Marlee Anne has talked about Jesus living in her heart, what happens when she dies and how to live her life that is pleasing to God. Lately each time Mike and I go to the funeral home or to a funeral she ask what is going to happen when she dies. Last week when Mr. Bill died Mike and I shared a lot about how he lived his life and what he meant to us. I know that Mr. Bill played a large part in my salvation along with seeing and hearing my mama and daddy read their bibles and praying. There were so many people at Calvary Baptist Church that played a part in my salvation. Another one of those God planning my way.

Well last week Marlee Anne asked Mike if he would baptize her. I don't know of a greater joy for a daddy than to have his child ask that of him. So many nights as we pray Marlee Anne thanks Jesus for living in her heart. We wanted to make sure that she understood it all. As she asked more and more questions we could tell there was an urgency for her to feel secure and grounded in her faith. Today we sat down with her went over the scripture again and made sure she knew what she was doing. She prayed and asked Jesus into her heart. There were lots of tears of joy.

If I was any more blessed my heart would surely bust. I am thankful for my wonderful husband who lives his life daily and allows God to shine through so that his daughter wanted what he has and wanted what he lives. I am thankful for our loving Christian parents that raised us to know who Jesus is.

I heard the saying once would you rather live your life as if there is a God and die to find out there isn't or live your life as if there isn't a God and die to find out there is. I am thankful I know! I am thankful that my family will be with me in Heaven. My prayer is that I will have childlike faith and not question what surrounds me each day. That I will trust and allow Him to handle all that is around. I am sure He has lots to teach me through Marlee Anne.

Thanks for sharing in this joy with us! We told Marlee Anne that we will always be there for her to come to us. That we will hold her accountable and that she can hold us accountable. Mike laughed and said she already does that. She really does. At least once a day she reminds us that something we did wouldn't make God happy. So know we ask each of you to join us in lifting her up in her walk. Help us grow this child that God has loaned us to be more and more like Him each day. She has a good heart that wants to learn and take it all in.

We love and appreciate each of you for your love, support, friendship and prayers!

Karland's nursery

This is a vinyl scripture I did for my great neice's nursery.