Trey just told me "Thank you for being my mom". Then he asked me to never give him to another parent. LOL
Thursday, November 21, 2013
Friday, October 25, 2013
Random posts from facebook
Trey walks in the room and anncounces he is trying to decide what he wants to be when he grows up. His thoughts are: a doctor, a stay at home parent, or work at his dad's job, or stay home and work on computers. Hmmmm....sounds good to me.
October 16
Thankful
Yesterday I was at Trey's last therapy appt (for a while). I decided to take a walk, I have been trying to walk to lose weight, so I was walking and started praying. I was praying/thanking God for the people He has put into our lives since Trey's strokes. I then decided that I would post my "thanks" every day until Thanksgiving. I wanted to remember them so I decided I would also post them here too. So here is yesterdays and today:
16 hours ago
October 24, 2013
Today while on a walk while Trey was at therapy I was praying. I was thanking God for the people He has put into our lives since Trey's strokes. Today happened to be his last therapy session for a while. I started thinking that I have a lot of things to be thankful for and that next month is Thanksgiving and usually friends start posting what they are thankful for so I decided that I would go ahead and start posting what I am thankful for today, until Thanksgiving.
So, today I am thankful for the therapists, Dr's, nurses, and medical staff that have come into our lives. ALL of the therapies and treatments that have helped Trey.
So, today I am thankful for the therapists, Dr's, nurses, and medical staff that have come into our lives. ALL of the therapies and treatments that have helped Trey.
3 hours ago October 25, 2013
Today I was having a hard time deciding what I wanted to post for my being thankful status. Trey is standing on his stretching board and told me I am the greatest mom ever. So, today I am thankful that he still feels that way at age 10 and after spending so much time with me. LOL
Trey's story
I am a member of a hemiplegic group on facebook. Yesterday someone posted that a friend's neice has been diagnosed with Moya Moya Syndrome/Disease and they were asking for others with Moya Moya to share their stories. I thought that I would share Trey's story here as well:
My son is now 10. He is smart, funny, cute, loveable, and just all around awesome. He was born healthy, no medical problems. My pregnancy was pretty normal, I had hydremia but he was fine. I had several ultrasounds because of the hydremia, he was always fine.
One Saturday morning when he was 7 1/2 months old we noticed he was twitching on his left side. We called our pediatrician and got an appt. When we got to the office the Dr. checked him out and said she wanted to call Children's Hospital in Birmingham to talk to their neuro dept. She called and they agreed to check us into our local hospital to do a CT. My son, Trey, was acting pretty normal except for the twitching, he was a little less active than usual but that was all (that I remember). We checked into our local hospital, did the CT, waited and waited and waited for what seemed like forever, I guess it really wasn't. Our doctor finally came in and told us he had had a stroke and we would be going by ambulance to Birmingham to be admitted there (we live in Opelika, AL and were going to be sent 2 1/2 hours away to Children's Hospital of Birmingham). My husband and I were able to leave Trey at the hospital (our local one) with my mother-in-law so that we could go pack a bag and when we returned we were off to Birmingham. I got to ride in the ambulance with my baby. I was scare, my baby had had a stroke. The really nice back of the ambulance guy tried to make me feel better by telling me that my son was okay and was going to be okay because he was able to be in a regular ambulance. He told me that when you see baby ambulance it's bad and when you see a medical airplane/helicopter it is really bad.
We get to the hospital and check into a unit. We met the Neurologists and their fellows. The next day we were put into a regular room. Trey was tested up and down and everything looked good. The doctors told us sometimes children sometimes have strokes and we just don't know why. One of the doctors started telling us about this rare syndrome/disease called MoyaMoya. She said although Trey seemed fine his brain still needed to heal from the stroke before they could test for that. He was put on seizure medicine and after a week or so in the hospital we went home. Trey seemed to be fine. His right leg would tremble sometimes, we had learned this was called clonus. Other than the clonus he was trying to walk again and as active as ever. We went back to Birmingham for our follow up and medicine check and everything looked good. We were going to follow up again to recheck the seizure meds and talk about why he may have had the stroke.
Fast forward 67 days later (after the first stroke) Trey started twitching on the right side. He had had a fever the night before. As soon as he started twitching (seizure--he only had seizures when he had strokes no other time) I was on the phone with the dr's office. I was crying and telling them it was happening again. We saw the third Dr. in our practice, he told us since Trey had had a fever the night before that it was probably just a febrile seizure but he admitted us to our local hospital and a CT was done. We were to early. The CT only showed the first stroke. We were in the hospital for 3 days before they discovered he had had a stroke. We told the doctor's every day something was wrong and they told us because of the CT they didn't believe it was a stroke and that sometimes it takes a while to snap back after a seizure. This started on Wednesday by Friday the doctors agreed with us that he should have been himself so they ordered a second CT. We went down to CT by the time we had gotten back to the room our room's phone was ringing, it was the doctor telling us that he had had a second stroke. This stroke was much larger and the helicopter would be there to take us to Birmingham. I lost it! Remember, the nice ambulance man telling me my baby was going to be okay because he was in a regualr ambulance. Now we are going to be transported to Birmingham by helicopter. I think my mother-in-law had just arrived to the hospital when we were being told this, someone had arrived so we left Trey with her or them and my husband and I went home and packed a bag. When we got back to the hospital we found out that there was an accident or something and the helicopter was needed elsewhere so there was an ambulance waiting for us. Trey and I got in the ambulance. We were 2 1/2 hours away, we got to Birmngham in 1 1/2 hours, my husband actually said we made it in less time than that. He was following in our car as close as he could. When Trey and I got to Children's we were admitted to a room instead of a unit, we should have been in a unit but we had an awesome doctor that knew we wouldn't want to leave him. After my husband arrived the doctor hit us with news we weren't ready for.....they didn't know if he would make it and we needed to call our family. We prayed, we cried, and we asked for a chaplin. We called our families and the next day, Saturday, our families were right there by our sides. God is good, the swelling in his brain went down, he was getting better. MRIs showed that half of the right side of his brain had been hit, hald of the right side of his brain had "died". I think we were in the hospital for 2 weeks. The stroke had left him hemiplegic on the left side of his body. But he was alive.
Our lives changed after that hospital stay. I don't remember at which point, which month, but tests were done and he did have MoyaMoya Syndrome. The week he turned one he had bilateral brain surgery. On Tuesday he had the right side done and on Thursday the left. By Friday we were sent home. After the first surgery was done we were able to go in and see him. He was sitting up in the bed, my dad (who passed away earlier this year) and I went in to see him first, he was sitting up in the bed and when I walked in he said, "Hi Momma", he had always said Hi or Momma but never together. I am so glad my dad was there with me, he loved to tell that story. Only two people at a time could visit so my dad and I left and other people were able to go in and see him.
So, we went home on that Friday. His first birthday was the following Monday, he was one!!!! We had a quiet birthday party. That was June. In August we started OT and PT. Later he started speech as well. We were lucky, he qualified for Early Intervention so we had therapists come to our home and we also went to private therapy.
He is still in and out of therapy, OT and PT. He is hemiplegic. He has had several CTs and MRIs. He has had botox and serial casting of his left arm and leg. He has had surgery to try to help the tightness of his leg. We have had scares due to getting to hot and dehydrated, there have been a few hospitalizations just to make sure he was ok. He has not had a third stroke, we pray he never will. Nine years ago we were told if he had a third stroke they weren't sure if there was anything else they could do, but that was 9 years ago and I am sure, I pray medicine has advanced. He has just this year been discharged to an as needed basis for Neurology. We are being referred to a specialist in Birmingham for his maturing stages. I don't remember the title of the doctor, we have to chose between the three we were told about. He sees and opthomologist because the first stroke hit his right optic nerve area. He will never see 20/20, even with glasses. He sees a low vision doctor for this as well. He sees an orthopedic doctor in birmingham to monitor his hemiplegia and well as seeing an orthopedic clinic locally. He goes to OT and PT, actually he has just been discharged from therapy and will just be checked on for a while. He has ADHD and occasional migraines. Both the ADHD and migraines may be hereditary because I probably have ADHD and I do have migraines but we have been told because of the brain injury he was susceptible to both. He has had some other rare things happen to him, medically.
We have just started homeschooling him. He is a smart little man, has LOTS of common sense but he does struggle academically. He is on a first or second grade level in school, he is in the 5th grade. He doesn't let anything hold him back or get him down. He is such an inspiration.
He is good, he is okay. He has been in a special needs cheerleading team, pyramid topper. He players Miracle League Baseball, and just finished his first season of special needs soccer.
I am sure for as much as I have told you that I have probably left out just as much.
Tuesday, August 6, 2013
Thursday, August 1, 2013
Monday, March 18, 2013
Embracing the camera Feb 25 2013
I have been embracing the camera. I even took a picture of myself with rollers in my hair. LOL
It didn't curl, just gave my hair more body. LOL
It didn't curl, just gave my hair more body. LOL
Thursday, February 14, 2013
Thankful Thursday
I am behind from my post in January saying that I would keep up with my blog. Sorry about that. I did forget about the Thankful Thursday but today is Thursday and today I have a lot to be thankful for.
I have to back track 9 years then catch up to today.
Valentines 2004, Trey is 7 1/2 months old. He was always such a happy baby and healthy. He started having these twitches on the right side of his body. We would just hold him or lay him down and watch his right side move, sort of like he was shrugging only his right shoulder "I don't know" and lifting his right leg at the same time, not like a kick. We call the doctor's office, it's a Saturday so they aren't open their usual day hours but they are open until around lunchtime. So we go in and our doctor calls Birmingham and talks to them about what he is doing and how he is acting. We are sent over to our local hospital and a CAT Scan is ordered. A few hours after the CAT Scan we found out that Trey had had a stroke on the left side of the brain which effects the right side of the body, also his right optic nerve because it happened on the right side of the brain. We were sent to Children's Hospital in Birmingham. We spent about a week in Birmingham, had lots of tests done, came home not really knowing exactly what had happened but knowing that other than the fact he had a stroke he was completely healthy. We were told there was a disease called Moya Moya Syndrome he had symptoms of it (the stroke) but there were other symptoms of this disease that he didn't have. But any further testing would have to wait until after his brain had healed from this stroke. He came home, he was his normal happy self.
Almost/around two months later we had our follow up with the neurologist and everything looked good, upon physical exam. We talked to the doctor and were just going to continue follow ups for a while. Trey was almost 10 months old and he had a really large stroke on the right side of his brain, left side of the body. This was a big and bad stroke. Long story short, he could have not made it, God had a different plan!!! He lived!!! This time there were some effects from the stroke and he did have Moya Moya Syndrome. The week he turned one he had bilateral brain surgery.
Nine years later, he is Trey. He has medical issues, not health issues really just physical and some academic challenges but he is Trey.
So, this Thursday, Valentine's Day, I am thankful for knowledge, the knowledge God gave the doctors. I am thankful for medical miracles.
I have to back track 9 years then catch up to today.
Valentines 2004, Trey is 7 1/2 months old. He was always such a happy baby and healthy. He started having these twitches on the right side of his body. We would just hold him or lay him down and watch his right side move, sort of like he was shrugging only his right shoulder "I don't know" and lifting his right leg at the same time, not like a kick. We call the doctor's office, it's a Saturday so they aren't open their usual day hours but they are open until around lunchtime. So we go in and our doctor calls Birmingham and talks to them about what he is doing and how he is acting. We are sent over to our local hospital and a CAT Scan is ordered. A few hours after the CAT Scan we found out that Trey had had a stroke on the left side of the brain which effects the right side of the body, also his right optic nerve because it happened on the right side of the brain. We were sent to Children's Hospital in Birmingham. We spent about a week in Birmingham, had lots of tests done, came home not really knowing exactly what had happened but knowing that other than the fact he had a stroke he was completely healthy. We were told there was a disease called Moya Moya Syndrome he had symptoms of it (the stroke) but there were other symptoms of this disease that he didn't have. But any further testing would have to wait until after his brain had healed from this stroke. He came home, he was his normal happy self.
Almost/around two months later we had our follow up with the neurologist and everything looked good, upon physical exam. We talked to the doctor and were just going to continue follow ups for a while. Trey was almost 10 months old and he had a really large stroke on the right side of his brain, left side of the body. This was a big and bad stroke. Long story short, he could have not made it, God had a different plan!!! He lived!!! This time there were some effects from the stroke and he did have Moya Moya Syndrome. The week he turned one he had bilateral brain surgery.
Nine years later, he is Trey. He has medical issues, not health issues really just physical and some academic challenges but he is Trey.
So, this Thursday, Valentine's Day, I am thankful for knowledge, the knowledge God gave the doctors. I am thankful for medical miracles.
Wednesday, January 30, 2013
Makeup Makeover
Thursday, January 24, 2013
New Year, new goal
I didn't make a resolution this year but there are a few things I would like to do or accomplish. Of course there is the weight loss goal, doing pretty good with that. Then there's the "I want to do better with my blog" goal, so that's why I am here.
I read a friend's blog. She posts pretty often and she prints out her posts to make a memory book for her children. I think that's awesome!!! I don't know if I will do that but I think it's a great idea! I was on Facebook and one of the special needs pages that I follow had the idea of "Thankful Thursday". The idea is to write down 3 things that you are thankful for, look back at the things later and it will make you happy.
Jibberish from Trey:
eraedzdzsdzsdzBdzcZASsqsaxzasWARTAEAFSRGDXSRTETRWTRWSRFW4RW45WAFEADEQEQ
Last year was not the best year! There were deaths and illnesses. As I reflected on the year and looked back at pictures of our loved ones I noticed I didn't have a lot of pictures of family. I noticed I didn't really have any pictures of myself and hardly any of Jason. So, I have a friend of a friend who blogs and takes a picture of herself/her kids/her husband every week. No matter what she is wearing or what they are doing once a week she takes at least one pic. I think I am going to try this too. It will 1. keep me blogging and 2. give me more pics of my kids, self, husband. I think this is a great idea.
So, I am going to do better with my blog. I will be thankful and embrace the camera at least once a week, I hope. Let's see how this goes. LOL
I read a friend's blog. She posts pretty often and she prints out her posts to make a memory book for her children. I think that's awesome!!! I don't know if I will do that but I think it's a great idea! I was on Facebook and one of the special needs pages that I follow had the idea of "Thankful Thursday". The idea is to write down 3 things that you are thankful for, look back at the things later and it will make you happy.
Jibberish from Trey:
eraedzdzsdzsdzBdzcZASsqsaxzasWARTAEAFSRGDXSRTETRWTRWSRFW4RW45WAFEADEQEQ
Last year was not the best year! There were deaths and illnesses. As I reflected on the year and looked back at pictures of our loved ones I noticed I didn't have a lot of pictures of family. I noticed I didn't really have any pictures of myself and hardly any of Jason. So, I have a friend of a friend who blogs and takes a picture of herself/her kids/her husband every week. No matter what she is wearing or what they are doing once a week she takes at least one pic. I think I am going to try this too. It will 1. keep me blogging and 2. give me more pics of my kids, self, husband. I think this is a great idea.
So, I am going to do better with my blog. I will be thankful and embrace the camera at least once a week, I hope. Let's see how this goes. LOL
Happy Birthday, Honey!
Today is my best friend, my husband's birthday.
We met almost 12 years ago, 12 years ago next month. The night we met I knew we would be together forever, I knew he would be my husband. I thank God for him everyday. I thank God for our family and our life together. Happy Birthday, Honey! I love you!!!
We met almost 12 years ago, 12 years ago next month. The night we met I knew we would be together forever, I knew he would be my husband. I thank God for him everyday. I thank God for our family and our life together. Happy Birthday, Honey! I love you!!!
Harlee turned 4!
I just realized that I haven't put a recent picture of Harlee up in a while. I can not believe that she turned 4 years old a few weeks ago. I sure do love this little lady!!!
Monday, January 14, 2013
Welcome To Holland by Emily Perl Kingsley
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Celebrating Holland - I'm Home by: Cathy Anthony
Celebrating Holland - I'm Home
Cathy Anthony - parent
I have been in Holland for over a decade now and it has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on when I first landed in Holland. I remember clearly my shock, my fear, my anger, and the pain and uncertainty. In those first few years I tried to get back to Italy, my planned destination, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more, but this too, has been a journey of time.
...
I worked hard; I bought new guidebooks; I learned a new language, and I slowly found my way around this new land. I have met others whose plans change, like mine, and who could share my experience. We supported one another and some have become very special friends.
Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many encouraged me; many taught me to open my eyes to the wonder and gifts to behold in this new land. I discovered a community of caring - Holland wasn't so bad!
I think that Holland is used to wayward travellers like me and grew to become a land of hospitality, reaching out to welcome, assist and support newcomers. Over the years, I have wondered what life would have been like if I had landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging, and at times, I would (and still do) stomp my feet and cry out in frustration and protest. Yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too, and look closer at things, with a new appreciation for the remarkable beauty of Holland and its tulips, windmills and Rembrandts. I have come to love Holland and call it home.
I have become a world traveller and discovered that it doesn't matter where you land; what is more important is what you make of your journey and how you see and enjoy the very special, the very lovely things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn't planned yet I am thankful, for this destination has been richer than I could have imagined!
Cathy Anthony - parent
I have been in Holland for over a decade now and it has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on when I first landed in Holland. I remember clearly my shock, my fear, my anger, and the pain and uncertainty. In those first few years I tried to get back to Italy, my planned destination, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more, but this too, has been a journey of time.
...
I worked hard; I bought new guidebooks; I learned a new language, and I slowly found my way around this new land. I have met others whose plans change, like mine, and who could share my experience. We supported one another and some have become very special friends.
Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many encouraged me; many taught me to open my eyes to the wonder and gifts to behold in this new land. I discovered a community of caring - Holland wasn't so bad!
I think that Holland is used to wayward travellers like me and grew to become a land of hospitality, reaching out to welcome, assist and support newcomers. Over the years, I have wondered what life would have been like if I had landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging, and at times, I would (and still do) stomp my feet and cry out in frustration and protest. Yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too, and look closer at things, with a new appreciation for the remarkable beauty of Holland and its tulips, windmills and Rembrandts. I have come to love Holland and call it home.
I have become a world traveller and discovered that it doesn't matter where you land; what is more important is what you make of your journey and how you see and enjoy the very special, the very lovely things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn't planned yet I am thankful, for this destination has been richer than I could have imagined!
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