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!!!
Tuesday, September 29, 2009
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!
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!
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!!!
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!!!
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
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.
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.
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