Special childern
Im not sure if I have ever posted about my 8yr old daughter.She is a pure miracle.Samantha has several heart defects,and on top if that she has Situs Inversous(it means all her oragns are on the oppisite side of her body).This is the time of year she goes to her peditriacain heart doctor.Her heart as corrective transportion,and when babies are born they are blue,and heres why the blood goes straight through the body instead of going through the lungs 1st to collect oxygen,therefore the newborn needs open heart surgery right at the time of birth.Heres where the miracle comes in,some how her vein that would need to be rerouted it fixed itself.She was born totally pink and screaming..LOL!Also she has dextra cardio and thats where the bottom portion of her heart stayed where it should be and top of her heart turned.Her ped.cardio (Dr.Wright)is just amazed and he can not understand how this happened.At 1st we went to see him every yr,then we went too every 2yrs,then back to 1yr,and now it has been 2yrs since we ahve seen him.The only issue right now is she has a valve working under high pressure when in fact it should be working under low pressure so she takes a very low dose of high blood pressure med.This time of yr i just worry so much,like when she is tried more than usual I think is this a sign of her heart failing?My little girl as stumped so very know heart docs w/ the way she is.When she was 6weeks old is when we found out by pure accident,after her 1st sonogram of her heart i remember Dr.Wright saying this baby needs a medical book all about her,and thats what he did.He started a book w/ a very known heart doc. in Denver,each time we go he is just amazed at how wonderful she is doing.He once gave me a ration on her and it was 1 in 700million ppl..LOL!he has NEVER seen anyone w/ this anatomy. Last time we went to see him he told us about a gentleman who was in will into his 70's who had dyed due too cancer,this guy donated his body for medical research,and they found he had situs inversous,and he had a valve working under high pressure in stead of low.Since Sam is being followed by many docs. they look for this type of anatomy in bodies that are donated to science.Its amazing how people go their whole life w/o even knowing about their rare condition. I just wanted to share my daughters story w/ allof you,and I was wondering do any of you have kids who have special needs or any kind of defect?If so how do you handle the extra stress? Thanks for taking time too read  |
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| I'm sorry that you have to go through this with your daughter. I fully understand how living with a loved one with a serious medical condition can be quite trying.
I have learned to accept what is unchangable, and only worry about things that can be changed. Worry about unchangable things won't change the outcome, but will make you ill. Enjoy each day as it comes and goes. It is what it is. Good luck! |
| Samantha is indeed a special angel and from the recent photo of her and Mickey she looks the picture of health. As a parent you must have experienced such a feeling of helplessness at seeing your tiny baby in trouble. It's amazing how she overcame so many obstacles and she is indeed a miracle child.
One of my sons was born with a birth defect that while not apparent to anyone as it was inside his body. I can relate to your post. He had four surgeries from the age of 6 months to 2 years. I can't go into detail as he's now a teen and would die if I was writing about him but it regarded his kidneys. I still remember that feeling of helplessness as a parent and unable to do anything but pray he was in good hands of the doctors. The waiting room at Children's hospital was the worse as I was blessed that my son would go on to live a normal life. Other parents did not recieve such a hopeful outcome for their child. I remember thinking I would never again complain about insignificant things as my child was going to be okay!!! Hopefully I will always remember this lesson especially now that he's a teen..urg! (sigh...some days). It's ironic that you wrote this post as just today my son went for day surgery and all the feelings I had years ago came flooding back. Thank you for writing this post and reminding us that all children are precious. Samantha is an angel and she is blessed to have you as her mom where your love for her is so apparent. She's indeed a very special little girl. Marianne Give Samantha and Mickey a hug for me! |
| WOW!! I didnt know about your son,Im so glad he is doing great!!Sam has her heart app. on Dec.21st so go figure im a ball of nerves........ Thanks for your kind words........ |
As someone who has met Sam in person, all I can say is she is just a delight! I had no idea that she had any problems, from what Mike and I could tell when we met her, she is a perfectly adjusted, beautiful, happy 8 year old! She ran around playing with the doggies, introduced us to her pet rabbit midnight, and showed off her lovely artwork. I wish all children were that well behaved  Tanya, you have a great daughter, and while I'm saddened to find out about her condition, I'm deeply hopeful that she will have a wonderful, full life! You're doing a great job, keep it up! I hope you all have a lovely holiday this year!
Karen  |
| Give Sam a hug from me! As a person who deals with huge amounts of stress...I agree with Ron. Worry about things you can change, not what you can't. It's hard to do but I've found my puppy helps. When I start to worry about things I can't change, I play with Nab, or hug the kids for no reason. Sounds silly but it helps me.
Della |
| No it doesnt sound silly at all NAB,it sounds just about right Thanks so much ~hugs~ |
| Tanya,
You have a beautiful daughter! She also sounds like a wonderful miracle when she came to you pink and screaming! I can only imagine the emotion and relief you must have felt after preparing for the worst. I hope that your appointment coming up brings still good news. That sounds like a great present! I have been very blessed with healthy children. Joey gave us a scare when he wasn't gaining weight, they did 2 tests, one for Cystic Fibrosis and the other for celiac sprue, I can't tell you how nervous I was for those tests to come back. We did a happy jig when they were both negative and our little boy was just fine. Thank you for sharing your Samantha with us, it is nice to hear about each others upright babies as well. Happy Holidays, Stormi and co. |
| Stormi,your words to me mean so much to me,they really do,and i appreciate your words of encouragement.Im so happy that your son is healthy and happy and that his test came back ok. And LMAO@jig dance of happiness I so know what that dance looks like,thanks of reminding me how great that dance is. Best wishes and Happy holidays to and your family God bless Tanya and the boys |
| Hi,
I know that I'm new here, but your timing is perfect. My four year old son was born with a large birthmark on his knee. No big deal you would think. The problem is that as we have all been told we need to watch for changes in birthmarks and moles. The problem with a large birthmark is that by the time you notice a change in it, it would be too late for a good prognosis. The solution is to have the birthmark removed. In order to do this, they surgically inserted a tissue expender in his groin area on September 22nd. Then they filled it weekly with saline to grow a thick piece of skin. The expectation was 10 cc's a week. He was able to tolerate 60 cc's a week. Because of this we came to the next step last Monday. We went back into the hospital, removed the birthmark, used the skin that was created by the expander to do a skin graft and put him into a cast from mid thigh at the top and we can see the tips of his toes at the other end. In addition, we have two healing incisions and a drain. MERRY CHRISTMAS! He is a great little guy and has come through it wonderfully! The drain will be removed next week and the cast will come off on the 30th. Then 2-3 weeks in a foam athletic cast and we're done. When my daughter, who is now 8, was born the corners of her mouth hadn't fully developed. This cleft pallette on the sides. When she was two the surgeon went in and redid all of the muscles in the sides of her mouth and closed off the corners. Now anytime someone comments on her beautiful dimples my husband and I smile. They aren't dimples at all, but the scars from her surgery. Through all of this I have decided that all kids end up having something that their parents have to stress about. It might be crooked teeth, the need for glasses, a learning disability, etc. But the fact remains that they all have something. I do feel very blessed. After spending tiime at our local children's hospital I realize just how lucky I really am. These are all just minor bumps in our lives compared to some of the other kids in the pediatric ward. The little boy in the room with my son is six years old and he has had 14 surgeries. Even after all of this, his dad was helping ME try to get my son to go to the bathroom! Sorry this is so long, but I guess it hit a chord with me. Thanks for listening! Renee |
| Tanya, Samantha is a beautiful little girl, and I can just imagine how worried and frightened you must be, but it sounds like you've done a wonderful job, and I'm sure that will make all the difference.
We'll all be thinking about you and your little girl, and please let us know how the appointment goes! |
| Renee,wow!your little guy has been through alot its funny how they are stronger than us parents,and dont our childern really teach us paitences?Im so happy for you guys and i hope your little guy will not have any more surgeries.Please keep us posted IM very interested in knowing the outcome.Thanks so much for sharing your story,its hard sometimes to talk about things that involve our babies,but then sometimes it helps to ease some of our stress,and w/ all the support I have been getting by my fellow OES lovers it truely has made a big difference. Willow thanks so much for caring about my baby girl,its funny when you get some encouraging words from ppl it honestly helps,and knowing you will be praying for my angel Willow it makes me very happy,and makes me feel blessed. Renee,feel free to pm if you ever need to talk about your child,Ill be here if you ever need me.. Thank you all so much for your sweet and encouraging words ~big sheepie kisses too all of you~ |
| Tanya,
Sam is a simply beautiful little girl! Children have a way of coping with things so much better than adults, I just wish we adults could re-learn that from our kids! I'm sure Sam's next dr appt will go fine - she's amazed them up to now, right?? Enjoy your Christmas with all your angels, both 2 legged and 4 legged! Chris |
Will tomrrow Sam goes to her heart peds.I have been sick all day w/ worry.Infact Im still in my pj's  .I really hate the wait from making the app. to the actual app. in my heart I know things will go great,but the worry wart in me still says What if?I have no clue how I would ever handle that,in fact I dont think I could handle it.People ALWAYS tell me God doesnt give you more than you can handle............I sure hope thats true. |
| Hi Tanya,
Sam's appointment will go just fine, just keep yourself on the positive side. I don't think God gives us more than we can handle, but we sometimes can't see ourselves going through it until it is here and upon us. I can give this advice, but I am just as much a worry wart as you are. Remember, children pick up on our emotions as well, and you don't want Samantha to think something is/or could be wrong. Take today to color and play games and tomorrow go to that routine checkup and when you get home, tell us all the great new about Samantha's heart! It will be an early Christmas present to all of us here. You and Sam are in our thoughts and prayers.
Stormi and co. |
| Stormi,you are so RIGHT!!Im such a worry wart,but your right,I need to just mellow out wrap up w/ Sam and watch some cartoons or something.....once again THANKS so much!! |
| Tanya, I have a daughter who will be 30 in a few months. As a child she had a heart problem then once diagnosed correctly she had surgery. I always took her for her check up in Dec. She had an enlarged heart and the surgery fixed the problem and one night in Dec the doctor called to say her body had caught up to the size of her heart and he wished her well. That was my Christmas present always. You are Samantha's mother and would know if she was not feeling well, trust your judgement. Go to sleep early tonight. God bless. Dolores |
| Dolores,yes once again another mom w/ excellant words.Thank you so much and your right I would know,wouoldnt I? God Bless you,your words really touched me for some reason I just started crying after reading what you said too me.Thank you very much.I hope one day i can be the one saying the healing words that will help one of you get through a stressful time. |
stormi wrote: Remember, children pick up on our emotions as well, and you don't want Samantha to think something is/or could be wrong. I was 30 years old when I found out that my mother had a morbid fear of the dentist, and had all of her life. She never let on to me that she was apprehensive, and of course she accompanied me on every appointment, including trips to the maxillofacial surgeon to have some poorly placed teeth surgically removed.
Good luck, Tanya! |
| Will everyone I am one HAPPY mommy right now We went to the docs and Sam got a clean bill of health!!!!!She is 47inches tall and 60lbs.Her heart is strong!!and healthy!!She has a minute leaking w/ her valve thats working under high pressure instead of low,but Dr.Wright said if was too take 100ppl off the street atleast 85 of them would have the same amount of leaking so the amount she has is "noraml". I thank ALL of you so much for giving me you kind words and helping me get through some VERY stressful nights.My heart and love to you all,it really means so much too me that all of you cared enough tot ake time out and help me,and i really appreciated it. Merry Christmas too all of you.......... Tanya,Samantha and the boys |
| Great news Tanya! |
| I ditto Willowsprite! Great news Tanya and Samantha! I know you are one happy Momma right now! Go out and celebrate, give your beautiful little girl a great big hug from us! Jack and Annabelle want credit for the hugs too, and the Ragdolls send kitty kisses!
Happy Holidays, Stormi and co. |
| Tanya,
Glad to hear the news about your daughter. My 6 yr old son Ryan is developmentally delayed. He didn't walk or talk until he was about 3 1/2 years old. He is in special ed to so he can receive all the services he needs. Speech, Physical and Occupational Therapy. His gross and fine motor skills are significantly delayed. He basically functions on a 3 yr old level with those skill. He is very smart though. He had a lot of problems before he could communicate and would bang his head on the floor a wall...me anything that he was close to. Thank God once he was able to communicate that stopped. But he would also hit and bite. He has quite a few autistic traits, but not enough for a diagnosis. He still to this day has major melt downs...temper tantrums in public where he will throw himself on the ground scream, kick...etc...Ryan was also diagnosed with a Pineal Cyst on the brain that has to monitored by MRI every year and half. If it grows 5 mmls he will need brain surgery to have it removed. Talk about stress!!! After the first diagnosis of Ryan's problems my husband and I started having problems. He couldn't deal with the fact his son wasn't normal. We divorced when Ryan was 2 yrs old. Now I have a wonderful husband and child number two on the way. Of course the stress if always there with Ryan and the chance he might eventually have to go through brain surgey. If you need someone to talk to.... I'm here Take Care Elissa |
| Glad your daughter is doing well! You couldn't ask for a better holiday gift. |
| Tanya!!! So delighted to hear that Sam is doing great!! Big hugs for both of you!! Have a spectacular christmas!
Karen |
| Yeah!!!!!!!! That's great news Tanya, and of course the best Christmas present you could recieve!! Give Samantha a hug and one for the four legged boys in your house too.
Pepsi's mom - Thanks for sharing your story with us as well. As a Special Ed teacher I know you have some challenging moments but also some very touching ones. Hugs to your little guy from me. Marianne |
| Thank You Marianne!
You are right about the challenging moments. I do wish there were more of the touching ones. It does make it worth it through. Take Care, Elissa |
| Tanya and Sam - WONDERFUL news!! And just in time for Christmas - what perfect timing!
Elissa, I will keep you in my thoughts and prayers. Christmas miracles DO still happen, don't they? Keep the faith! Chris |
| Hi i read your story and hope things continue to improve all the time for your daughter, i am now a 43yr old man i was born with cardio dextra heart and after further investigation i was found to be born totally situs.
i wasn't diagnosed until i was 5yrs old and through my early years i remember conversations with doctors and nurses and my parents that i may not be able to have children etc, However i met some one we fell in love and we had two children a daughter and a son who have grown up healthy and well and i also have two beautiful grand daughters. So hope this helps to reassure you as a parent your dreams for your children are possible, my mother helped me by making sure that i had as normal a childhood as possible and not someone contantly in hospital used for medical research. Best wishes Chris. |
| Tanya. hello there I knew a psychiatric consultant a Dr Ludlow when I worked at the local hospital. At the time I was quite stressed about my personal life. The advice he gave me was, if you are worrying about something allow yourself to worry about it even have a cry if you need to, set aside certain times. Then keep your self busy with things you like to do. If I am stressed Ihave learned if I only give it a small amount of time. I am more constructive with how to handle the problem. luv pepe |
| Chris,thanks so much for sharing your medical issues w/ me.I dont think i have ever met someone w/ total situs(like Sam has)and dexter cardio *sp?How are you doing?Did you need a pacemaker?Its funny how life is isnt it?The doctors say she wont have any issues since ALL of her organs are mirrored image(wrong side),so im wondering have you had any issues w/ your situs?have you taken any meds?Right now Sam takes a very low dose of high blodd pressure its a prevenitive so her valve keeps working under low pressure.Samantha is truely my angel,she is a typical 8yr old(soon to be 9 Aug.24th)she loves animals,skateboarding,biking,swimming,roller coaster and etc....Im sorry for all the questions Chris,as a neverous mommy Im very curious.Thanks so much in advance. |
Shaggydog wrote: ............ trust your judgement. God bless.
I have a grandson born with Tars Syndrome. Meaning, he has a low platelet count requiring infusions, at times with blood. He has many allergies due to this condition, such as milk products, detergents, etc.... He was born with only the top bone in both arms, meaning his hands are where our elbows are, only somewhat shorter. The kids were told that if he makes it to his second birthday he should live a normal life span. Praise the Lord, he's now 17 months old. He too, has had some critical moments, especially in the first few months, but the Lord is fighting his battles for him and he will be healed. Never give up hope. Keep the faith! My daughter (in-law) spoke with a few mothers of children born with this syndrome and was also told to "trust their judgement." This is a rare enough condition that the medical world is just getting familar with it. Parents know their children, they're with them daily, and sometimes "DO" know whats best, even if it doesn't agree with the doctors. The Lord works in mysterious ways. She teaches handicap children and our son is a paramedic/fireman, as well as a minister. They are both well qualified to care for a child with handicaps, but there's no preparation for giving birth to your child and finding it has serious medical issues at birth. This little guy will be slower to walk, etc...but, he rolls across the room faster than the speed of lightning or scoots across on his butt by using his legs to pull himself. My concern was "how's he going to be able to tend to bathroom necessities on his own or will he." We've watched him figure out how to do so much with his feet and legs. If somethings on the floor he wants, he decides whether he wants to pick it up with his little arms or his feet, plans the "roll" and then lands tight on top of it in order to pick it up. Its amazing and such a blessing to watch him. Of course, we'd prefer he not have to struggle, but to him its all normal. Thats the one positive thing in all this, the little ones learn to live with the adjustments they have to make. They are so much stronger than we are. Its easier to say than to do, but moms, don't spend all your time in worry. Cherish each and every moment, try not to spoil them, and don't forget the rest of your family. They need you too! I know a lot of guilt is associated with things like this, but no one did anything wrong. Even the case with my grandson, both parents had to have the gene for this to happen. And, rare as it is (thank God), it still was no accident that these two fell in love, married, had two perfectly normal sons, and then our little Isaac, the one with the Syndrome. Children are God's prescious gifts to us, to love and care for, for the duration. They are all blessings, but those with handicap issues seem to be born with something in their spirit that "normal" lacks. The strength they're born with is nothing short of a miracle. Knowing they have health issues that can be life threatening makes you appreciate not only life, but time. A sadness comes with their birth and whatever the issue is, but yet such joy, peace and comfort they bring as well. I pray and praise God for all their healings, and thank Him for what they have taught and given me in my life. If I've said something that may have offended anyone, I'm sorry, jmo. Be happy, healthy and hug a Sheepie. That always helps! |
| Hi mouthy,this is tanyathenurse,and in NO way did you offend me.I am a strong beleaver that God gives us only what we can handle,and in the tough times God is there holding us up.Your grandson sounds simply amazing.before my 8yr old I always thought the childern who have to struggle a bit more,or have extra doc app.,or just are differnt in any way are truely gifted childern.Some times i feel ok God this is something i can NOT handle,please help me,and even tho tough I do get through it.The stress is UNbearable at times,those times I take a deep breathe,and ask God PLEASE hurry help me!!Seems he has come through every time. Please give your grandson my best,and let him know theres a wacky family in Wi rooting for him!!!  |
| Thank you, will do just that!
Now, you do this for him. Whenever you feel stressed out, look at your daughter. Take a deep breath, feel your love for her, exhale, then smile, with or without tears. Remember, stress causes illness, as well as death. From the name,Tanya (thenurse,) I don't think I have to tell you that. You must stay well for her. Grieve for her, a little at a time. I know it sounds cold, but if you are willing to look death in the face, your fears will begin to disappear. Your peace will be restored. You will know in your heart that everything is going to be ok, regardless. A new light will then shine on you and your daughter. You'll both be free then to have an open, honest relationship, filled with true love. Truely, I understand and hope you understand that it is not my intention in any way to offend or upset up you. My husband has tried for years to get me to discuss certain things pertaining to illness and death, but my life was so full of both, that for years I refused. His recent illness has forced to face possible death once again, only this time I am not afraid. To make a long story short, I lost my dad to cancer at the age of 14. My mom remarried, had 3 daughters, etc..... Years later as I was writing about him, I stopped and thought how much I would've loved to have had him in my life all these years, to see my son, grandchildren, etc... I thought, "Okay, if you had a choice, what would you do? Choose dad or your sisters?" I choose my sisters. He was a wonderful man, 36 years old at that time. If I would have chosen dad, I'd have lost out on all the life and love I've shared with my sisters, along with that of the families they now have. We never know what the future holds, or when time will span from the past to present, and become the future. What we do know is that we have the present, its ours to cherish. There's a time for everything, but worry won't change anything. God bless. |
| Yes your right I am a nurse,and i DO know what stress does to anyone heathly or not.Kids sure make us adults grow up dont they?Every day I look at my 8yr old and think how much i love this kid,Id lay my life down for her,I know IF it ever came around and IF she could take my heart I KNOW i would give her mine in a heartbeat.I take alot of breathes,and look long and hard at her,and all i see is this beautiful,smart,silly 8yr old girl who loves life,that usually knocks some sence into my head. You tell your grandson for HIM I will take more time to relax,and KNOW what God has given us. Im so sorry about your dad,but yes life is wacky thats forsure.Altho I didnt loose anyone when I was a kid I was abused severly by my "mother".Left home at 16,and was Pg at the time.I never thought id get out of my own misery,but 17yrs later,my 17yr old daughter lives w/ me,hubby,and Samantha,and I feel Im at the highlight of my life right now.Altho I pray and wish I would some day feel loved by my "mother",reality is I will never get anything close to love from her.Therapy has HELPED tons!! For yrs I wondered how was I going to be a good mommy if I never knew what it felt like to be loved by a mommy.Well Im proud too say,I know Im very good mommy,I shgow ALL my kids how much they mean too me every single day.So yes mouthy life is wacky,you never know whats going to be your next story,do ya? God bless you and your family |
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