Sunday, April 26, 2009

Chitty Chitty Bang Bang

Last night Marlee Anne and I had one of the most amazing treats we have had in a very long time. I have been so excited about this day getting here.

Aunt Kim took us to see Chitty Chitty Bang Bang at the Fox. She, Grace, Lindy, Tracey and Ann picked us up around 5 and we all headed out.

We had supper at the Spaghetti Factory. I could have been embarrassed if I had been with someone else but they all understood it. I was eating like I wasn't going to get back out for another year or so. The food was delicious. Service wasn't up to their standards but after one comment from Aunt Kim and everything was wonderful!!! I was at the head of the table with no child to feed on either side. Marlee Anne was stuck up under Aunt Kim the whole night so I just breathed. WOW!!! I didn't know my mind, body, heart and soul needed that so much! I enjoyed my one on one time with Grace so much too!

One of my most favorite things of the night besides spending time with all of them was watching Lindy. She had never been out to Atlanta like that. She was just bubbling with excitement. Everything was just amazing to her. It really touched my heart. As we headed to the Fox she was taking it all in. I was so very excited and had been there many times before so I can imagine how she was feeling.

When we walked into the Fox it literally took her breath and outloud you heard her. It was really precious. We got to our seats which were perfect and when she and Marlee Anne looked up they both went WOW!

Chitty Chitty Bang Bang was amazing. It was so funny because to my left was Kim, Marlee Anne & Lindy. They were all oohing and aahing and sitting on the edge of their seats. They were so fun to watch. To my right was Grace, Tracey & Ann. They all just sat there, smiles every now & then but definitely not on the edge of their seats. It was really very funny!

When Chitty Chitty Bang Bang took flight it was absolutely amazing! I cried when the children came out and were singing. They were just so very talented. Everyone was great but I loved seeing the children that the child catcher had gotten.

Afterwards we took a thousand pictures in front of the Fox just to get the right picture. We had so much fun watching all the prom dates there and at the Spaghetti Factory.

We went to Krispy Kreme before going home. Even that was very exciting for Lindy too. Well all of us actually. We just had an incredible night. I asked Lindy if she ate her lemon donut and she said she did. She said this has been the most amazing night. LOVE it!!!

The ride home was filled with laughter all the way. Well at least from the front two rows of seats. Grace and Lindy took naps on the way home.

Thanks ya'll for a very incredible night!


When there is an anonymus comment on our blog or one that doesn't have an email address posted I am never sure how I can thank you but thank you! I am not sure people realize just how much comments of encouragement and prayers means. It is what gets us through some of the really tough days. Thank you so much for your time, kindness, love and prayers. You make the world a much better place!

Saturday, April 25, 2009

WOW! Man I hate my heart sometimes. I just take it all and have to feel it all. A trait I gladly take from my daddy but man it's tough sometimes. I was almost like a kid in a candy store or a bird set free. It was so refreshing to get out of the house with my entire family together to fellowship with others.

As we drove out to Relay in all the crazy traffic I was praying that it would be a good night. I was planning how I was going to get everyone out and to the field. Well when we parked (perfect parking place btw) Marlee Anne said here comes Leanne. Then my phone rings and it's Grace saying she is on her way to help. They get the stroller and wheelchairs out for me and everyone out. Then help me get them to the campsite. God's perfect timing!

Well I get there and get to sit. For the first year ever being at Relay I enjoyed it more than ever. I got to be the mommie of a survivor. What an amazing feeling! I have always loved being team captain and getting everything together but having that stress gone was really nice. Once I started seeing committee members I realized my heart was still there though cause I have really missed being with them and planning the event. They are an amazing group of friends. Thanks to each one of ya'll for making it the success that it was. Ya'll did an awesome job!

Miles for Michala team this year was awesome! My sister did an amazing job as team captain. My brother, nieces and nephews, aunt and cousin along with so many of the employees of Newton County Water Authority did the most wonderful job! They won top friends and family team. The t-shirts were beautifully designed by John Macquilliam. Thanks so much John! The banner was done by Martha Worley and it was awesome. Thanks Martha!

Uncle Papa and the Dalton Gang BBQ did an incredible job as always with their fried pickles, BBQ & boiled peanuts. I just realized I never got any boiled peanuts. Oh man!

Our wonderful friends at Steele Co did a great job with The Dukes of Hazard. They provided some great laughs. The also provided some delicious corn dogs!

Sheetarius and Mini Shee did an amazing job! There is going to have to be a separate email about them. Sheetarius is the 2009 Miss Relay which I think is very well deserved! Great job ya'll and thank ya'll so very much for doing so much for Relay. Can't wait to see all the pictures cause flashes were going off every where.

Marlee Anne wanted to walk around so I told her Michala and I would go with her. She played a few games along the way and we got to see some friends and family as we walked around. I just wish I could have had more time to spend with people that I never get to see any more. I miss them! We went over to the moonwalks that our friends of Affordable Moonwalk own just as Lee was eating supper. Michala kept reaching for his food. Lee fed her all of his stew. She ate every bite of it. Even later on she ate a whole BBQ sandwich. I am telling ya'll this girl is an eating machine when she wants to eat. She gets it honest.

This night was filled with emotions as Lisa had reminded me of before it started. As I walked with Mike pushing Michala for the survivor lap, Marlee Anne was right there with us and I was holding Abe. I could feel his heart racing as his seizure continued. For a minute I was taken away from the Relay and catching myself talking to God about why was this happening now. Why could we not have had at least a few hours of peace for him at least during this time. I quickly stopped and said not now satan, not ever. You are not taking this joy away from me. Michala was so excited about this night. She knew it was for her. She knows she is a survivor.

Most times the loss of her legs doesn't get to me but for some reason last night it did. Not in a bad way but as far as realizing how far she has come and how close we have come to losing her. Her precious Aflac nurse Rebekah was there with us last night. She loved Michala through those bad, hard and sick inpatient days 11 years ago. It all was just very real last night.

As we were waiting for Michala to say how long she had been a survivor our friend Robby came over and said could I take a picture for ya'll. Blown away. For Robby this was just a nice gesture he was doing for his friends. For us it was so much more than that. It meant so much to have someone take the time to do that for us. Thank you Robby! Then of course Michala's FBC fan club had to take pictures too. We can always count on Amber to be there ready with her camera. Can't wait to see those pictures too. Thanks so much ya'll for capturing these memories for us!

Michala always walks the survivor walk with our sweet friend Kylie but we couldn't find them. We were so excited when we heard Kylie say, Kylie Harris 10 year survivor. I was doing ok NOT great but ok holding back the tears. When the crowd cleared there was Kylie waiting for us. I lost it! We were able to walk with she and her sweet family then.

A special thanks to special friends Kim, Tracey and Elizabeth for volunteering to help with the CPS-3 study program. Also to all those of you that joined the study.

It was great to see so many friends but I would have liked to have more time to get to spend time with them. I enjoyed spending so much time with Abbey, Bryan, Paige, Scheree and Brandi at the Cafe and at Miss Relay. Thanks for ya'll's time to help out and walk.

I am not going to try to name names of specific people that volunteered for Miles for Michala because I am sure to leave someone out. Thanks to everyone who walked, set up, took down, served in the Cafe, did painted pet rocks, face painting and tattoos. Thanks to everyone that made donations.

We have been hearing lately how blessed we are. We are so richly blessed. So many of ya'll proved that to us last night with your love and support for our family. Thank you so very much!!!

Thursday, April 23, 2009

Abe's appt at Shriners

Tomorrow, well I guess that would be today, in about 5 hours we will be leaving to take Abe to Shriners Hospital in Greenville, SC. He has an appt with ortho for a check on his club feet. I am excited because they will be ordering his new shoes. I have duct taped the straps on his other shoes so many times it's awful. It will be so nice to have new ones. I am a little nervous because this doctor is not Dr. Ponsetti. He did train for a year with Dr. Ponsetti. So we will see what we think of him. Please pray for a safe trip and good report!

Truly nothing is worth more than this day! The doctors said she wouldn't make it. They said her body wouldn't be able to fight the stage 4 cancer that she had. Her life or her leg. We chose. Then 7 months later they told us it was time and her body had fought all it could fight. Almost 10 years to the day she is here. God willing she will take the survivor lap at Relay for her 11th time. No nothing is worth more than today!

Monday, April 20, 2009

Friday's appt

Friday morning we are up and ready to leave around 6:30. As soon as Mike puts Michala in the van she starts having a major seizure. Maybe the excitement of leaving that early. She thought we were going to Disney World probably. What a way to start a morning. I just said let's get them out of the way first thing.

We get to Monroe and Mike goes to Starbucks and Chick-fil-A. We were all happy and ready to ride by this time. Everyone did really good.

We stopped at the rest stop before the hospital to get everyone changed and ready for Abe's appt. It had been a year since we had been and that was when Abe was in the NICU so I didn't go. I was really excited for Abe's appt.

We get off the elevator and this is the first time ever we weren't greeted by at least one Shriner. Mike had told me last time they were in the process of changing a lot of things. In the attempt for organizing things they have made it very cold and uncaring. It's like being cattle pushed through. I was shocked. It's not family oriented and definitely child oriented any more.

Once we went to the different places to get registered it was about 30 minutes before we got called back. That worked really well cause it gave us time to get medicines for everyone. When we were called over the intercom to go back we went to where we were told. A nurse came up and told us we needed to move down to the other end of the hall. We moved down there and another nurse asked what we were doing there. We explained and she said we were not supposed to be there. A third nurse came up and ask who we were. She looked at the board and took us to our room. About 20 minutes later a nurse came in and asked where we had been because she had been paging us. We explained what happened after we were paged the first time.

She went over Abe's meds and told us that the doctor would be in shortly. The PA came in and ask a few questions about Abe's medical history mainly at birth. She said that she would go get the doctor and they would be right back in. In a little while the social worked came in and was about to go over everything and realized we had been there several time before with the girls. She talked about Abe and wanted to know what kinds of problems he was having with his hips. We explained we weren't there for his hips but his clubfeet. She had the wrong records. She told us what type of treatment they would do as far as casting and we told her we had already had that done. She asked who did it. When we told her she was very excited. She said oh Dr. Westberry is going to be so excited. She said you have to tell him about your experience because he trained under Dr. Ponseti.

About an hour later Dr. Westberry came in. Everyone was getting ansy waiting that long but I like when it takes a doctor longer to get in because usually it means it's a doctor that will take up as much time as needed with you. He walked in and introduced himself. He was across the room from Abe. He asked who did Abe's casting. When we told him you could see a look on his face or so we thought. He said well what are you doing here. We told him Dr. Ponseti was no longer seeing patients and had recommended we come to see him. He said well what do you want from me. We told him we wanted to make sure his feet were fine and he wasn't relasping. From across the room without every touching his feet he said they look good. This was definitely not a certified Ponseti doctor. Dr. Ponseti would be terribly upset if he knew how Abe was treated. He asked what shoes Abe has been wearing. When I showed him he said we don't use those. He said you need to try these and if he doesn't do well with them you will have to order those on your own. He was in the with us less than 5 minutes.

The PA came back in and checked his hips and back. The nurse came back in and sent us to ortho to get his shoes. We checked out and went to ortho.

When we got in ortho we were at the Shriners hospital we knew. They were amazing with the child that was there ahead of us. After Mike knew that that was going to go good he and the girls went to the playground while Abe and I waited. Once he was done with the child before us he asked what we needed. Then he asked a girl what she needed. Hers was something quick so I told him to please go ahead and help them because I didn't mind waiting. He measured Abe's feet and asked me to put his socks on and take him to the room and he would bring the shoes out. He said he wanted to try them on him before he attached them to the bar. When he came to the room he asked what type of shoes Abe has been wearing. When I showed him he said oh no you don't want the shoes that we have. He said the chances of him relapsing with these shoes are much greater. I showed him the problem we had with them. He said you know what we have a leather guy here. Let me see what he can do. He asked who casted Abe's feet. When I told him he said now is that his son or grandson. I said no he doesn't have any children it was actually Dr. Ponseti. He said is he still practicing. I told him that he was 93 when he did Abe's casting and he would be 95 in June. He explained to me that the shoes Abe had been wearing were Dr. Ponseti's design and they were the best shoes. He said I would not change. He touched Abe's feet and really checked them out. He said this is amazing. He said he curls his toes alot. He is hoping with the new straps that will help. It wasn't long before the leather guy brought the shoes out. He put a new piece of leather on the two straps that were covered in duct tape.

We were on our way and had a great afternoon out and about.

That last email went out before I was finished with it. I have been medicated for the past two days and just found out that I have a really bad UTI. Hopefully the antibiotics will take care of that. I wanted to say sorry for the late night text messages that went out last night during my cry for help. Thankfully Amber and Brooke were up late and came to my rescue. Thanks so much ya'll!!!

We did discuss the changes and things with Shriners. We were told that they may be shutting the hospital down. The final word on that should come July of this year. That will be very sad because we have met some amazing doctors and nurses there.

Thanks so much for the prayers for this visit. It reconfirms that we did the right thing by taking Abe to "the man" in Iowa. Amazing doctor! The orthodics technician was saying how sad it is that a doctor that amazing has tried so hard to pass on something so incredible and it just doesn't seem to stick. If Abe has to have any treatment in the future besides just check ups we will definitely go back to Iowa to Dr. Mouquende.

Thursday, April 16, 2009

quick update

I am sending this out to several list so if some of this doesn't pertain to you please overlook the part that doesn't. There is probably something in this email though that I needed to share with you or ask you. It was just easier to put it all in one email. Thanks! Slowly turning into more than a quick update.

First I have a praise. We got to see Abe today for a few minutes. Most days he is having so many seizures when he is awake that he is not there. I believe it's his body's way of protecting himself from what's going on. If not having seizures he is out of it from all the seizures or the rescue meds. Tonight we got to see him smile and he even squealed a little. It lasted about 10 minutes and then he was gone again. I am thankful that God gives me those glimpses. Those reminders that he is still in there.

Marlee Anne started reading! That is a HUGE praise because we have been struggling with this. She has been wanting to read for so long. The fact that her teacher has one of the worse Southern drawls there is doesn't help things. Yesterday I was in tears as she read her first book. Last night she read it to her daddy. We are so very proud of her. I love to see her face when she reads the words and it all clicks. Yesterday she said oh mom that makes me think of the playground. I don't know that she needed anything else to trigger her imagination but it is definitely opening new worlds for her. Thanks to those of you that have helped with reading and sight word materials.

I heard a loud nose in the therapy room and when I went to see Michala had pulled herself up on the bookshelf. She had her leg extended and was almost flat footed. She still has a hard time turning that foot completely straight. There was some books she wanted down and she was determined to get them. She did! And before my scrapbooking friends ask - NO I didn't get a picture!

Mary Elizabeth of course is the precious angel she always is. I am thankful for her laugh, beautiful smile, and lovely singing - even at 2 in the morning.

Monday night we got to go to Camp Sunshine Spa Sydell Night. Early in the day I had posted on my facebook status looking for a Reese Egg. Well imagine my surprise when I got back home and my sweet friend Casey and Jessica left me a 6 pack of eggs. I wouldn't even share with Mike tonight. Well I only have 2 left.

Yesterday we had a wonderful surprise from Rachel and Kylie. Kylie came in with a huge basket of eggs. She wanted to have an Easter egg hunt at our house. How very sweet was that. It was too windy for Abe and Mary Elizabeth so they stayed in. Rachel hid the eggs, then Kylie, Michala and Marlee Anne went out and found them. Such a great treat for us! Lots of fun.

Abe's gtube sight started bleeding yesterday. Could this be granulated tissue? It looks irritated some what but not sure why. Any thoughts?

Also his nose started bleeding. Rachel thinks possibly his cortef is too high. Could be. Also anyone have trouble with nose bleeds from Zyrtec or Keppra?

Today we got a call from Egleston asking when we were going to pay our $800 bill. WHAT? For some reason the insurance is not covering a bill. Please pray that this is just an oversite by the insurance company. Also please pray that he will be approved soon for Katie Beckett. This will help tremendously with the medical and especially the monthly medicine bills. We have just been setting up payments for the hospital which we will do but it would be a blessing if they call back and say oh it was just a mistake.

Abe is getting really long and soon we will have to get him a big boy carseat. We still need something that will recline especially during seizures and because of his lack of head control. If anyone has a suggestion on a brand that they have used please pass that info along.

OK one last praise & thanks for all those of you that have been praying for Brooke. Her results from her mammo were ok. We are thrilled!

I have a special prayer request for one of Abe's NICU nurses that is very special to us. She was having bad headaches and day before yesterday her husband took her to urgent care. The found out she has a brain tumor. Today they did surgery and we are still waiting to hear the results. Praying it's benign. Please lift Terri up in your prayers!

Thanks so very much to all of ya'll for all your prayers and continued support.

Sunday, April 12, 2009

Our weekend!

Friday a lot of my day was spent thinking about Jesus on the cross. I cannot understand how God watched him suffer when he could have done something about it. Instead he allowed that to happen for a reason. A reason I will be forever grateful for because I am so not worthy. As I thought of that I thought of how I would do anything in the world not to watch Abe suffer. I want him to quite screaming out, I want his seizure to stop. For whatever reason this is part of this season of my life. That's where my battle lies at this moment. Understanding and learning from this season in my life. Right now is extremely hard to go through this.

Mike had a wonderful day at the Masters. I was so excited for him to get home and share his day with me. I love hearing about the golfers and the beauty of that amazing course. I actually just love to hear Mike talk and share his day especially when it's one he has enjoyed.

Saturday we celebrated Grammy's 70th birthday. It was so much fun seeing her so excited and surprised. It was a wonderful night with a fabulous meal cooked by Uncle Papa.

Easter Sunday tradition was broken mama said. She doesn't remember that a couple of years back two years in a row we were in Disney World. I didn't plan for everyone to come to our house for Easter because I was tired. I am physically, spiritually and emotionally exhausted! Usually I will push on past it but I just couldn't. We were invited to go to Kim's and I know I let out a huge sigh of relief not to have to plan or do anything. I missed my sister and her children but was glad to be with mom and Bryant and the Anglin clan. It was a such a beautiful relaxing day. Marlee Anne enjoyed playing with all the kids and hunting Easter eggs. She has never been involved in an Easter egg hunt that big except for at Camp Sunshine. The girls and Abe loved the attention from everyone and enjoyed a relaxing time at their second home. Everything is set up and perfect there for them. Makes life easy for us cause we don't have to pack up and move to go over there. Mike ended up taking Abe and the girls home to rest (and watch the Masters) while Marlee Anne and I stayed and played. I had a selfish moment of lying in the wonderful sun for about an hour. Talk about rejuvenating. I am ready for another week now. Well ok maybe we should just take another night for now.

Tradition should be going to buy Easter outfits and new shoes to go to church on Easter morning. Instead our morning was spent battling seizures instead of going to church. I wish this was different but once again I am realizing it's a season that we are in right now. Mike and I are used to working with the children and the youth. Right now we don't fit any where. It's hard! It's hard because we cannot leave them in class without us and we can't take them in service. I think sometime this is one of the biggest struggles for us.

I have to share a very special moment in our home this morning. The Easter bunny has never been a very big deal in our home. Several Easters were spent in the hospital with Mary Elizabeth, then one with Michala in the hospital on Easter and some we were out of town. We have just never really talked about it much. Well Marlee Anne has seen talk of the Easter bunny on TV so she has been talking about it more and been very excited. Yesterday she asked me to call the Easter bunny to make sure he knew her daddy wanted a big white chocolate bunny. Well Mike went out early this morning to get himself a big white chocolate bunny. Too funny!

Last night Kendra gave Marlee Anne a carrot to put out for the Easter bunny! Thanks Kendra!!! I was thinking ok milk and cookies for santa but a carrot for the Easter bunny. Well it had to have bite marks and leave a little piece of the carrot behind. It was cute!

Back to this morning. This is kinda long but I really want this for my memories. Mike was sitting in the kitchen while I was getting everyone's morning meds together. He asked Marlee Anne to come in there so he could talk to her. She was busy with the stuff the Easter bunny brought but she came right away. Mike said you know Easter is not about the Easter bunny. She said yes sir. He asked her if she knew what it was about. She said Jesus died on the cross and was put in the grave and on Easter he rose up. Mike asked her what the most important thing was and she said to believe in Jesus and to ask him into your heart. He said what happens when you do that. She said you will go to Heaven when you die. He asked if she knew what was Heaven. She said Jesus and God are there and everything that you want. He said what will happen to Mary Elizabeth and Michala when they get to Heaven. She said they will get to run and play. They will talk and Mary Elizabeth will sing. He said how long will you live in Heaven. She said forever. He said what will not be in Heaven. Kind of a tricky worded question cause I was trying to figure out what he meant and I could tell she was too. He said what's mommie doing. She said crying and there will be no more tears in Heaven. That is what it is all about. If I am only here on this earth for that one thing then I am glad. I am blessed! I know Mike thought he was going to have to explain a lot of the answers to her. He doesn't realize that he lives it everyday. It doesn't take sitting her down talking to her, teaching her, lecturing her. She hears his words, sees his action and knows his heart. I am blessed!

Well I am sure I have left out so much that I wanted to share. My mind and heart is still reeling from so much.

I hope that everyone's weekend was filled with blessings!

Friday, April 10, 2009

Abe's update

We started Abe on Keppra almost 3 weeks ago. Like with any seizure med with him right away it seemed to help. His awake times have been so much better with him being active, alert, rolling around, and squealing. We were getting better seizure control but still having seizures. I went ahead and went up to his max dose. After doing that the seizures increased. He has also started having seizures as he falls asleep. However this was also at the same time that the bad weather started coming in. I am not quick to change or increase meds when it's bad weather because we know that makes things worse for he and Michala both. After taking with Dr. Bebin in Huntsville we have decided just to leave things as they are for another week and see how things go. Hopefully the seizures will decrease and so will the need for rescue meds.

Also I talked with Mo and Atlanta has been in touch with Dr. Shoffner about Abe. None of the labs are back yet. Once those are back we will decide if the muscle biopsy is still needed. If so we will coordinate that along with his VNS surgery. The only possible complication with this is that the muscle biopsy needs to be done at Meridian Mark outpatient center which he has never been cleared for surgery at before since he is high risk. However the Atlanta docs seem to think it will be ok. The VNS hinges on him weighing 20 lbs and we are not there yet. We will discuss all this in depth before making decisions.

I just wanted to give an update since some of you have been asking. Thanks so much for your continued prayers!

Wednesday, April 08, 2009

With a full heart....

Sometimes when my heart is full I just need to share so this is just some ramblings over the past few days. It's days like today when all this builds up I wonder why God created my heart like this. Sometimes I wish I didn't feel so deeply about things. Then I am sure I would miss out on things if I didn't.

Sunday morning I received a call early that Tim's daddy had died. He had a stroke two weeks before and it was time for him to rest in peace. He was 86 years old and lived a very full life. This was an amazing man. I am blessed to have known him and have my life touched by him. I was blessed to have been able to spend time with his family the past two days. I don't do funeral homes or funerals well at all but especially not when it's someone's daddy or brother. Well Scheree knew that as soon as I walked in yesterday but I so wanted to be there for this entire family. Today the funeral was amazing. Just to look around at the people in the congregation here for this man. To hear the wonderful stories about his life. He was a well respected man and rightfully so. His family has a lot to live up to. I told Mike I pray that I live my life in a way that when I am gone no one has to make up good stuff to say about me. I pray that my life and the way I live it speaks for itself. Mike is a very good man in my eyes and in memory of Mr. Howard he wore a Georgia Bulldog tie. He doesn't do anything Georgia Bulldogs ever. This meant a lot to me that he did this for such a wonderful man. I feel for Tim losing his daddy but my heart hurts for the girls. They will miss their daddy. Linda spoke beautifully about her daddy at the funeral. I know he is proud of them all.

Abe's seizures have continued to be bad. He had about 30-40 today lasting from 5-20 minutes. He had one really long one. Thankfully they stopped by themselves. Still waiting to hear from the doctors.

John our craniosacral therapist called last night and said I have something God wants me to share with ya'll, could I come over. Sure. When he got there he said that awhile back he asked me when Abe's seizures started. I told him right after one of his immunizations. He said you blame yourself for allowing him to get that immunization. He said this is not your fault. He said God knew his life before he brought him into this world. He had a plan. He shared so much with me. I wish I had had a tape recorder and could play it for all of you. He went on to say that he doesn't understand why God chose Mike and I to take care of these 3 special ones. Then of course he added Marlee Anne but he said that she is wise beyond her years and she knows without a doubt why she is here. With the responsibility of taking care of these children He has entrusted us just like any other parent to raise our children to be blessing in the community to help better our world. To help prepare the world for Christ return. WOW! & WHEW!!! Talk about responsibility. It's enough in itself to know that we are here for a purpose but to realize when we are trusted with children to raise for their purpose it's a lot. John went on to give me some tips and ideas of massage techniques to help with Abe and with all of us and our home. I asked if he was planning to leave the country or change his phone number cause he was throwing a lot out there to me. He laughed and said no I will still be here and you can call me anytime.

Tonight we were blessed to have one of Michala's Aicardi sisters and her dear family come to visit. We had a wonderful time with them. I know I say this often but I have to say it again. I would not have chosen Aicardi syndrome for Michala but without that our lives would not have been blessed by all the wonderful families whose lives are also affected by it. This family is so very dear to us and we love them so much. They have loved us, supported us and prayed us through so very much! As Pam was holding Abe he started to have a seizure. She said does he always have a seizure when he is going to sleep. DUH!!! What an AH HA moment for me! He has just started that over the past few days and I didn't catch it. I was thinking that he was having a seizure and then going to sleep. No he would have some good moments which he did with Pam. She say his eyes clear and him look at her. Then a few minutes later she asked that question. She was so right and a light bulb went off in my head. That's exactly what is happening. He has always or for quite sometime had seizures when he wakes up but these have started recently and that's it. That's when he has some spasms with him jerking some, he does the eye blinking and his eyes roll back in his head. What a blessing it was for her to be holding him, realizing this and then talking it through with me. Thanks Pam!!!

Well my heart still feels full. In a good way, but maybe I left something out. I am sure I will fill in any missed spots soon.

Oh I know! I wanted to share once again about my precious husband. I know ya'll get sick of this and if ya'll want to ya'll can delete the email now and not read this. Yesterday he and I were talking to friend and he told them it was hard living with super woman. HA! We had some really wonderful conversations while we were together yesterday. Last night when he came home from work he brought me the most beautiful roses. I was so very touched by that because it's just not something he does any more mainly because I would always fuss and say I could have used that money for something else. He used to send me flowers every Friday at work when we were dating. Instead of fussing I sat stunned while he got on one knee, handed me the flowers, kissed and hugged me and simply said thank you for all you do. I think I often forget how far thank you can go and how very much it means. Marlee Anne was so excited to see him do that for me. She immediately grabbed the camera and started taking pictures. I am thankful she sees how much he loves me. Then this morning I received an email from him with a picture of Greg Norman. OH MY!!! Yes he is one of my 3 famous heart throbs. I was so hoping Mike could get a picture of him for me at the Masters but since he can't take his camera I will just have to hear a play by play from Mike and settle to watch him on TV.

This journey we are on is not easy right now. However I am so very thankful that God knew ahead of time just what I needed to make it through it. He has blessed me with the most amazing man who when it is all said and done will have no made up stories about him only true stories holding him in the highest regards. The most wonderful family and friends that anyone could ask for. Thank you so very much to each of you for your love, support and prayers. My prayer for each of you tonight is no matter what trial you are being faced with that you will allow God to bless you even if you have to searched deep to find one, find it, cherish it, hold on to it, share it and be thankful for it.

with a heart full....

Flowers from my sweetie!

Beautiful flowers from my sweetie and pictures taken by Marlee Anne. She wanted me to be sure I shared them with ya'll.

While I am sharing these pictures I have to share something sweet that Marlee Anne said. Hannah had been in her wheelchair for a long time so Mike got a blanket out for her to sit on. Marlee Anne said WOW I didn't know Hannah could sit up. She said that's great! It was really so very sweet to see her excitement about that. She also said something really sweet and now I can't remember it. Pam do you remember. Pam said girl you have been here before. That remember me of what our friend Linda always says about Marlee Anne being an old soul.