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)

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!

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!!!

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!!!

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!

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!!!

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!!!