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Burgandy
CA
18 Years Ago....
It was 18 years ago today that i gave birth to a premature baby boy. He was 6 weeks early, thank heavens he didn't have the complications that most premature babies have. His name is Casey. Casey is 18 today! He weighed in at 4 pounds 6 ounces and 16.5 inches long. Casey has mild cerebral palsy, with hearing problems, vision problems and global delays. He is mentally about 10 years old. Casey goes to high school and is a junior. He was in the hospital a few weeks ago with pneumonia. Last week I learned he has a heart murmur. The pediatric cardiologist said it should have been detected at a younger age because he feels it has been there since birth.
Casey has taught me a lot over the last 18 years. Some things good, some things not-so-good. *sigh* I am glad he is here, I am sad that he is not "normal". and many things are a struggle to him. Many things that others his age take for granted. Casey lives to play video games, loves his music, and told me that some day he would like to have a girlfriend. In some ways I see a boy who is 18. Sometimes he has a perception and memory that surprise me. I didn't think he would survive that first year or two. He is little for his age. He is 5 ft. 1 in. tall and weighs 78 pounds.
He has a determined and stubborn at times, he is sweet and understanding at times. I guess you would say he is typical?
I felt today would be a good day to share with the group...about what happened 18 years ago today.
Update - 2 months ago:
Today Casey has an Echo-cardiogram to rule-out a leaky valve in his heart. I just found out he needs additional blood work done too.
Please pray that Casey doesn't fight the phlebotomist today and doesn't panic over the additional blood test that he did not expect. Please pray for Casey not to have a leaky valve.
I am really tired and my plate is full over the next few weeks. Thank you.
Update - 2 months ago:
He had his echo-cardiogram done and was kind of cranky about it, but allowed the specialist to complete that. I didn't tell Casey until the last minute he had another test. This time the blood test. He would have been anticipating it and making a scene in the hospital. He grumbled many times over and swore in the hospital in front of others, and fought the entire 1.5 waiting. When it came down to the blood test, he finally got it done while arguing, then realized it wasn't so bad. Next week we will find out the levels of hormone therapy he needs and then start another not-so fun process of weekly shots. I am going to ask about medicine by mouth and plea my case. I am not looking forward to this either. Thanks so MUCH for taking time to ask. I am really scared and tired. Have a great day.
Update - 2 months ago:
March 12, 2008, I am leaving for a 5 hour drive to take Casey to an Endocrinologist. Casey doesn't do well on trips and the last time we went some where it was a nightmare for me due to his behavior. Please continue to pray for Casey...
Update - 2 months ago:
Wish me Casey and I luck. leaving tomorrow on the dreaded Endocrinologist appointment.
Casey has been a real challenge the last few days behavior wise. He fought me for about 4 hours yesterday because he didn't want to go to school because he has physical therapy. I am not understanding what the big deal is. Therapy is only 30 minutes long once a week! He has tight muscles and need even more than the school can provide!
This morning he didn't want to go to school again. He just wants to sit at home and not do anything. He is the class bully, so I don't think this is the problem. He thinks his life is tough and all I do is try and limit his over-stimulation to make things easy on him. In the mean time I spend many hours trying to anticipate what might set him off so I can help ease his issues. I am about to go into hiding and get tired of dealing with this. Even when I was married, I had to take care of Casey's behaviors and his attitude. I am praying that the next few days go smoothly. I have too much on my plate and getting really tired....
Update - 2 months ago:
THANK YOU EVERYONE WHO HAS PRAYED FOR CASEY!!!!!!!!!
Casey did well on the strenuous 2 day trip. His Dr. recommended something to help "take the edge off". He is already on medication, so I gave him a half of a dose for each day. I don't like to do this, but he agreed he didn't like being so nervousat the doctors office and wanted to try something he already knew would not hurt him. THANK YOU GOD!!! Casey's behavior wasn't perfect, but he didn't fully explode like he could have and has done in the past!!!! YEAH!!!!
GOOD NEWS!!!!!!!!!!!!!!!
Casey will not have to start hormone therapy!!!!!!!!!!!!!!!!!!!!!!!!! He is starting puberty and his growth is following what the endocrinologist wanted to see!!!!! He has a new endocrinologist and he is AWESOME!!!! He reminds me of the famous pediatrician "T.Barry Brazelton". Just what Casey needed and so did I.
I know we are not out of the woods yet, but this was DEFINEATLY GOOD NEWS! I wasn't looking forward to trying to give Casey shots everyday! Casey wasn't looking forward to it either.
On the trip, I lucked out and got to meet up with my brother, Casey's favorite uncle, and spend a few hours together. Had a great time. We also managed to link up with my brothers ex-girlfriend. She is really sweet and has a special place in her heart for Casey! We had a great visit. We got home late last night.
THANK YOU ALL FOR PRAYING FOR US. I know your prayers helped Casey's condition! GOD IS WONDERFUL!!!!
Although we still have a challenging road ahead of us, this was a HUGE BLESSING!
Again, Thanks EVERYONE!!!!!!
Update - about 1 month ago:
Casey has been having a hard time getting motivated to go to school. He wants nothing to do with school, because there is one person who he doesn't like. Please pray for his motivation! He has a great school program in which there are a lot of us trying to oversee. The person he chooses not to like lost her daughter to a problem with a heart and lung transplant. THANK YOU EVERYONE WHO HAS PRAYED FOR CASEY ADN THANKS TO ALL WHO WILL PRAY FOR HIM IN THE FUTURE!
Respond to this prayer request
You are Such a Good and loving mom and you have been blessed with a special child, Full of his own spirit. I know in my heart God walks along side him everyday and blesses him Amen. But I want to share a hug for you Mom, Good Job . May the Lord bless the prayers of your heart Amen. Cathy
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caroy
East Troy, WI
You and your family are in my prayers. I can sort of understand how hard it is for you. My brother had duchenne muscular dystrophy. There were some really tough days. He sounds a lot like your son, he lived for video games. lol He was mentally about 10, even when he was 21. It was really hard. I am glad you have help for schooling. My parents had to fight to get what my brother needed. I will keep you, Casey and your daughter in my prayers. God bless you!!
Burgandy - about 1 month ago:
Thank you! LOL Casey lives for video games and wants to be a "professional gamer". I have to fight for everything too. I have a really solid team that are helping out! How is your brother doing? I am almost afraid to ask, because I saw you talked about him in the "past tense"? Maybe I am paranoid? lol Thanks so much for the prayers! It means a lot to me!
caroy - about 1 month ago:
My brother Chuck died Thanksgiving morning 1996. He is in a much better place now. He's walking, running, and driving the monster trucks that he loved LOL. He is no longer suffering or in pain. He was in a wheelchair since the beginning of 5th grade, so now I like to think of him running around in Heaven. Ever since I can remember I prayed for God to heal him and then I started to pray for him to be at my wedding and to be able to see my kids. He stood up at my wedding and he got to see my first two kids. He was a great uncle!! He was always playing with my daughter and watching movies with her. She even got him to watch Barney. LOL But, he'd deny it if anyone found out. She had him wrapped around her little finger. Chuck also wanted to be a professional gamer. He thought he could test the games and then get into designing them. Most boys with his disease die in their teens. He made it to his 21 birthday. He was so happy. It really isn't fair that you have to fight so much to get help for these kids. You would think that people would be more understanding. I'm glad that you have people to help. If you ever want to talk or vent I am willing to listen, or if you just need a friend-I'm here. I will keep your family in my prayers!
Say thanks to caroy
Roxana_Allyson
Australia
Dear friend, How is your precious son doing? Our prayers and best wishes are with you and your loved ones. You are doing the best you can under stressful circumstances, I'm sure your hard wok will pay off in the long run. I don't have children but I remember being a somewhat difficult 15 year old. It's an awkward age for daughters and their poor mom's. I pray it passes soon and you move on to being the best of friends as my mom and I are now!. wishing you the best!.
Burgandy - about 1 month ago:
Casey is doing OK. I still need to get some blood tests done for him and also a pneumonia shot. I am not looking forward to that. He told me he is tired of doing all of these tests that require needles. I don't blame him! Thanks for asking! Thanks for the beautiful picture too! Things are still stressed between my daughter and I. I am really tired of trying to figure out what to say and what not to say to her! Oh well. Hope Jason is doing well!
Say thanks to Roxana_Allyson
you are such a kind and caring soul. thank you for praying for my dearest mother, my family and me. my heart goes out to you and casey. he is a dear soul and i'll bet he is a gem in so many ways.
needles are never fun for anyone. i was blessed with some decent skill with IV's, venipunctures, and giving injections when i was in the medical profession. i would have enjoyed being able to work with casey if i had the chance. we could have been 'buds'.
thanks for your kindness, and prayers. i have been feeling poorly. my health seems to be getting worse. chest pain again that seems to never go away, bad headache and legs/feet pain.
i think i might have peripheral vascular disease going on. i'm concerned about a heart attack or stroke as well. i have had some close calls over the years.
god bless you and your dear family.
Burgandy - 2 months ago:
Harley, Thank you for your kind words. Just like you, I do what I have to do everyday to get by. Some days are easier than others. Some days I don't have to look at the big picture. He turned 18 last week as you know. I am now thinking more about his future, because it is here. He has a year and a half before he graduates, so there is time there. Just getting through the next appointment is going to be HUGE! I am So not looking forward to this!
He does well with others that won his trust and I think you could have calmed him down, once you could see where his emotional state was.
Maybe you should get to a doctor, like YESTERDAY! Not like it's any of my business, but this prayer site needs to have you here for a loooooooooong time to come! Sorry, sometimes I play "mother hen" with others and it gets me into trouble! (sorry)
I hope things are going better for your mom and everyone else in your family is doing well.
Casey can be a character at time and at times he can act like a teenager, go figure! He is a little boy with a BIG heart, once he is won over, he is really cool! Thanks for your concern and thanks for praying for us. I know your plate is full and you have enough on your mind. I wish I could do more for your family... but praying is the most powerful gift I can give. Thanks again!
Say thanks to Harley Rider
CherylO
Pawtucket, RI
Lord I ask that Casey's bloodwork go smoothly and that his heart be in perfect working order. Lord, please bless this boy and allow him to feel your blessings in life.
Burgandy - 2 months ago:
Hi CherlO, thanks for taking time to pray for my son. He has no idea how many people are praying for him! Every prayer from every person means a lot to me....
Say thanks to CherylO
Roxana_Allyson
Australia
Dear Lord, PLease watch over Casey today and always. May he take these tests well and not panic at all over them. Please bless Casey and his mom with understanding, gentle and compassionate medical staff to comfort and reassure Casey through this procedure. Please bless his test results with good news, positivity and hope. I pray Casey's heart is perfect and strong in every way. In Jesus name I pray.
Dear Burgandy, My prayers and best wishes are with you and Casey today. God Bless.
Burgandy - 2 months ago:
Thanks for taking time to pray for my son.
Say thanks to Roxana_Allyson
loved1
michigan
lord please bless this mother and give her everlasting strength and love May casey become strong and healthy and find an abundance of love and joy in this life in jesus name I pray
Burgandy - 2 months ago:
Thank you for taking time to pray for us.
Say thanks to loved1
bighill
Felton, CA
Lord, may Your peace that passeth all understanding fill Casey's heart and mind. Comfort him and bless the phlebotomist with flawless technique. May Casey's heart valves all be sound and strong. In Jesus name I pray. Amen.
Burgandy - 2 months ago:
Bighill, Thanks once again for praying for my son and I. I am really getting scared and about to cry! Casey thinks he doesn't have to get blood work today. I am really dreading telling him...
Say thanks to bighill
shirlgirl
el paso
GOD bless GOD's child!
Burgandy - 2 months ago:
Thanks for lighting a candle for my son and the prayer!
Say thanks to shirlgirl
memo
Los Angeles, CA.
Precious Heavenly Father God:
I lift up precious casey to you and pray that you will wrap your loving arms around him and bring lots of Blessings to him as well as to his mom Burgandy. Lord we are thankful for the blessings that you give us and we are thankful for all the beautiful and wonderful miracles that you bring in our lifes.
Bless this child with all he deserves.
In Jesus Mighty Name I Pray.............
AMEN...............
Burgandy - 2 months ago:
Memo, thanks for taking time to pray for my son.
Say thanks to memo
ogriffy77
Texas
Lord we thank you for the miracle of children. I ask that you watch over this young man and nurture him and grow him into the man you would like him to be. Straighten his paths and lead the way for him to follow. Bless his family and may they be surrounded with your love.
In Jesus name, Amen.
Burgandy - 2 months ago:
Thanks for taking time to pray for my son. I am nervous today and next week is going to be a HUGE challenge. I am taking 5 hours away to an Endocrinologist to learn why he is so small and then he may need shots weekly for growth hormones... Casey is the kind of kid who needs to be retrained on a gurney for shots. I might have to be the person to administer the shots. I don't do needles, so I am going to find out if my pediatrician will administer the shots. I will keep every one posted on all of the goings on with my son.
Say thanks to ogriffy77
Ms_Sudhaa
India
Beloved Father thank you for sending this lucky child such a wonderful mother who loves him for who he is. I pray for this mother and son relationship. Let Casey continue to be a strong boy and eventually become a strong man. Dear Father grant him the clarity of mind, your wisdom and your love to Casey. Heal his body and mind. Take away the murmurs from his heart as we know that he is wonderful person with a beautiful heart. Let the talents of Casey shine out in to this world. I pray for him in Jesus name.
Amen
Burgandy - 2 months ago:
Thank you for taking time to pray for my son. As you can see there are a lot of challenges ahead in the next few weeks, months and years. The more people praying for my son, I feel I am not alone and have hope...
Say thanks to Ms_Sudhaa
Roxana_Allyson
Australia
Dear Lord, Thank you for the precious gifts of unconditional love and joy this special boy has brought his loving family. Please watch over him and protect him now and always. May he always know how special and loved he is. Please bless all his medical tests with only good news, positivity and hope. I pray his future is filled with perfect health, love and happiness. In Jesus name I pray.
Burgandy - 2 months ago:
Roxana_Allyson, Thank you for praying for my son. As you can see, there are still many challenges ahead. He was in the hospital last month with pneumonia. That was the second time in his life for this to happen. The doctor said they might need to cut a hole in his chest to drain the lung. I prayed for things to be OK and God came through to help him through the respiratory therapists and their work.
Burgandy - 2 months ago:
Thanks for lighting candles for Casey! I didn't realize this until I went to your page. THANK YOU!!!!
Say thanks to Roxana_Allyson
faydralove
long Island New york
Dear Burgandy; Thank you so much for your prayers for Joe Joe.he has more time now by the grace of God.You picture was beautiful it made me cry,I pictured God holding Joe Joe in his arms,that was so nice,I am so sorry for all of your challenges you are facing,I know it is very hard for you but you have as i said before a beautiful spirit and a strong faith and that is what is going to get you through this along with all of prayers for you and you family,take things one day at a time so your not so overwhelmed,I will keep you in my prayers,as always.That Our dear Lord look down upon you and relieve you of some of you burdens, I ask this through Christ Our Lord Amen.
Debbie xoxoxo
Burgandy - 2 months ago:
No problem Debbie. I am glad you liked the picture! My son has an Echocardiogram tomorrow. The cardiologist wants to rule out a leaky valve. Next week he has to see another specialist to find out if he needs weekly shots for his loss of growth. I am really tired of dealing with all of this. Plus, in many ways he is typical because he is strong willed and determinded about not doing what he is told. I think that is age typical, but this guy goes on for hours and hours over things that are bothering him! I am sorry to go on. My prayers and thoughts for you are not to worry about others and take care of the things that matter to you. I stretch myself too thin, dlea with depression, internalize because I don't want others to feel sorry for me. I am complicated LOL. I like praying fpr others because I feel the more praying for a cause or concern, gives us strength and not losing faith. I sometimes I feel I am sharing too much on here and feel foolish because I type what I do.
Thanks for your prayers and please continue to pray for me, only if it doesn't take time away from the things that matter to you. Joe Joe is lucky to have someone with a strong faith to take time to post and reach out to others for prayers. Good Luck Debbie
Say thanks to faydralove
CherylO
Pawtucket, RI
Lord I lift this sweet boy up to you and ask that you bring blessings into his life.
Burgandy - 2 months ago:
Thanks for taking time to pray for my son.
Say thanks to CherylO
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