a diagnosis of Down syndrome also means LOTS of doctor’s appointment. cardiologist, ear nose and throat, audiologists, endocrinologists….and that’s just wyatt’s list! so today we have wyatt’s first endocrinologist appointment. his bloodwork at his 1 year well check was a little high, and i am anticipating medication being prescribed. just one more thing to make the little fellow take! he so loves taking meds! (not!)
babies with Down syndrome often have many health related issues; congenital heart defects occur in about 50 percent of babies with Down syndrome. they often have digestive problems, thyroid problems, hearing issues, vision issues and some may develop leukemia. respiratory conditions and increased risk of infection are common as well. it is very important to stay on top of all these health concerns!
at birth wyatt had a congenital heart defect; an asd and a vsd, tiny holes in his heart, for which he had open heart surgery at 7 ½ months. we are currently trying to determine if he has hearing loss that needs treatment. he takes fiber daily to try to prevent constipation, and now his thyroid may need meds! we also give him DHA (fish oil), vitamins, extra vitamin c, and probiotics. and that’s not much compared to what some parents are giving their kids! we’re trying to boost his immune system to help him stay as healthy as possible!
i’m so thankful that we have awesome doctors, nurses, ultrasound technicians, and all the other medical personnel we work with! and i’m thankful for insurance and easy access to medical care and medications! i know that we are so blessed……
Thursday, October 7, 2010
Wednesday, October 6, 2010
All the Therapies....
a diagnosis of Down syndrome means lots of things, but today i'll talk about therapy! wyatt now has weekly developmental, physical, occupational, and speech therapies! i'm so thankful to have a team of therapists who help me in so many ways! we are blessed beyond measure with awesome ladies (and one young man!) who love our wyatt and want the very best for him!
if i have any questions, they are more than ready to answer them, and if they don't know the answer, they'll find it for me! they talk me through many decisions about wyatt's medical concerns; we benefit from the many years of experience they each have. they show me exercises, activities and therapies to do with wyatt, and encourage my efforts! they are always so supportive of me. i really look forward to their visits every week!
therapy of course doesn't end with their visits....we do some form of therapy as we play daily. sometimes it gets tiresome constantly thinking about what to do next to stimulate, teach, and exercise wyatt while we're playing! and sometimes i worry that our play is too focussed on a desired outcome, but it's all wyatt knows, and it's all fun to him! it's amazing how quickly he learns things, too! it's like a "lightbulb" goes off daily as something "clicks" and he's doing something new! i know that i am so blessed to be able to stay at home with him and give him that extra attention that he needs! it's a busy and exhausting life....and we are so blessed!
if i have any questions, they are more than ready to answer them, and if they don't know the answer, they'll find it for me! they talk me through many decisions about wyatt's medical concerns; we benefit from the many years of experience they each have. they show me exercises, activities and therapies to do with wyatt, and encourage my efforts! they are always so supportive of me. i really look forward to their visits every week!
therapy of course doesn't end with their visits....we do some form of therapy as we play daily. sometimes it gets tiresome constantly thinking about what to do next to stimulate, teach, and exercise wyatt while we're playing! and sometimes i worry that our play is too focussed on a desired outcome, but it's all wyatt knows, and it's all fun to him! it's amazing how quickly he learns things, too! it's like a "lightbulb" goes off daily as something "clicks" and he's doing something new! i know that i am so blessed to be able to stay at home with him and give him that extra attention that he needs! it's a busy and exhausting life....and we are so blessed!
Tuesday, October 5, 2010
All Babies are Blessings...
a baby is such a blessing....you hear it all the time, you read it on greeting cards....just about everybody loves a baby! we love babies....and we were surprised to be blessed with a baby in our "older" years! very surprised indeed! i've posted about wyatt's birth in the march 18th post "our bonus baby story" if you're interested.
we did not have a prenatal diagnosis, and we therefore were not prepared for wyatt's diagnosis of Down syndrome. we received the confirmed diagnosis 2 weeks after his birth, once our pediatrician received the results of his karyotype. by that time, we were pretty certain that the dr's suspicions were correct....we'd had 2 weeks to pray, love, cry, pray more, enjoy, research, mourn....such a vast array of emotions post-delivery (as if childbirth was not enough!) ... but it was still hard....
all that to say that recently one of my mom's best friends was visiting me and wyatt, and she said "you know, not that it's a good thing that wyatt was born with Down syndrome, but it's the best thing that could have happened for your parents." i know what she was trying to say, although i initially took a little offense, and she's right about it being so great for my parents.
they are older and were of course, maybe even more shocked with wyatt's diagnosis than we were. it's a shame their generation has such a different perception of Down syndrome. i've actually been told that we had a local pediatrician who institutionalized his own child with Down syndrome 30+ years ago. how sad that his own personal decision probably impacted a lot of parents of children with Ds. i know of one local family, whose son is now 32, to whom this particular doctor recommended institutionalization.....so sad. i'm so glad that this couple, even in their complete ignorance about Ds (they knew nothing...had never even heard of it!) responded that their son was not a puppy, and they were not going to put him away.....they would take him home and love him....
my parents have enjoyed wyatt so very much! again today, i wish i'd had my camera or video camera to capture my dad's playing with wyatt! it's a beautiful thing to see the love of grandparents for their grandchildren displayed so openly! mom works on animal sounds with him constantly....today he was "mooing" and "oinking"! they both help him walk a lot; sing nursery rhymes with hand motions, etc.
i am so blessed and thankful that God opened up this whole new world of Down syndrome to us. wyatt is so joy-filled! he laughs and loves so easily! he has brought great joy to so many people....friends, family and to complete strangers as well! he's stubborn and hard-headed too...but in such a cute way! we indeed are tremendously blessed!
we did not have a prenatal diagnosis, and we therefore were not prepared for wyatt's diagnosis of Down syndrome. we received the confirmed diagnosis 2 weeks after his birth, once our pediatrician received the results of his karyotype. by that time, we were pretty certain that the dr's suspicions were correct....we'd had 2 weeks to pray, love, cry, pray more, enjoy, research, mourn....such a vast array of emotions post-delivery (as if childbirth was not enough!) ... but it was still hard....
all that to say that recently one of my mom's best friends was visiting me and wyatt, and she said "you know, not that it's a good thing that wyatt was born with Down syndrome, but it's the best thing that could have happened for your parents." i know what she was trying to say, although i initially took a little offense, and she's right about it being so great for my parents.
they are older and were of course, maybe even more shocked with wyatt's diagnosis than we were. it's a shame their generation has such a different perception of Down syndrome. i've actually been told that we had a local pediatrician who institutionalized his own child with Down syndrome 30+ years ago. how sad that his own personal decision probably impacted a lot of parents of children with Ds. i know of one local family, whose son is now 32, to whom this particular doctor recommended institutionalization.....so sad. i'm so glad that this couple, even in their complete ignorance about Ds (they knew nothing...had never even heard of it!) responded that their son was not a puppy, and they were not going to put him away.....they would take him home and love him....
my parents have enjoyed wyatt so very much! again today, i wish i'd had my camera or video camera to capture my dad's playing with wyatt! it's a beautiful thing to see the love of grandparents for their grandchildren displayed so openly! mom works on animal sounds with him constantly....today he was "mooing" and "oinking"! they both help him walk a lot; sing nursery rhymes with hand motions, etc.
i am so blessed and thankful that God opened up this whole new world of Down syndrome to us. wyatt is so joy-filled! he laughs and loves so easily! he has brought great joy to so many people....friends, family and to complete strangers as well! he's stubborn and hard-headed too...but in such a cute way! we indeed are tremendously blessed!
Monday, October 4, 2010
A Supportive Friend....
my friend christy has been a tremendous source of support to me since wyatt's birth. she was one of the 1st people to visit us in the hospital, and graciously brought me chick-fil-a for breakfast! love those chicken minis! after work that same day, her husband, jeff, brought us chick-fil-a milkshakes and supper for tim ....do you see a trend? the wards LOVE chick-fil-a better than anyone i know!
after we got received wyatt's diagnosis of down syndrome, when he was 2 weeks old, christy is one of the first people i told. she brought me lunch at home the day after we received that phone call, and i will never forget telling her. she immediately sat down beside me, wrapped her arms around me and cried with me. her response was loving, compassionate, and supportive. she will never know how much her reaction meant to me! i'm fairly certain that she prayed for us that day, for the huge task before us of telling everyone about his diagnosis....
christy is now pregnant with their 4th child, a precious baby girl! they are in orlando for the disney 1/2 marathon and family vacation right now, and her water broke yesterday. she is not quite 27 weeks along; she will remain hospitalized in orlando until their baby is born. she is not in labor right now....her current prayer needs are that she doesn't go into labor, no infection develops, and that the baby's cord will stay where it should.
i can't stand that i'm not there in orlando with them to give them support, encouragement and hugs. to bring them chick-fil-a, take care of their kids, and just be there for whatever they might need....to "love on them!" just as they've been there for us and loved us!
the support that they and so many others have given us since wyatt's diagnosis has been so amazing and beyond what we ever expected, i wish i could do more for them! but i am doing what i can do....i AM praying, and asking other prayer warriors to pray for them....and i know that is the best thing i can be doing for them right now....
after we got received wyatt's diagnosis of down syndrome, when he was 2 weeks old, christy is one of the first people i told. she brought me lunch at home the day after we received that phone call, and i will never forget telling her. she immediately sat down beside me, wrapped her arms around me and cried with me. her response was loving, compassionate, and supportive. she will never know how much her reaction meant to me! i'm fairly certain that she prayed for us that day, for the huge task before us of telling everyone about his diagnosis....
christy is now pregnant with their 4th child, a precious baby girl! they are in orlando for the disney 1/2 marathon and family vacation right now, and her water broke yesterday. she is not quite 27 weeks along; she will remain hospitalized in orlando until their baby is born. she is not in labor right now....her current prayer needs are that she doesn't go into labor, no infection develops, and that the baby's cord will stay where it should.
i can't stand that i'm not there in orlando with them to give them support, encouragement and hugs. to bring them chick-fil-a, take care of their kids, and just be there for whatever they might need....to "love on them!" just as they've been there for us and loved us!
the support that they and so many others have given us since wyatt's diagnosis has been so amazing and beyond what we ever expected, i wish i could do more for them! but i am doing what i can do....i AM praying, and asking other prayer warriors to pray for them....and i know that is the best thing i can be doing for them right now....
Sunday, October 3, 2010
I'm Doing What I Can....
are you doing what you can? do you reach out and help where you can? do you offer a kind word and a smile to someone who is lonely? what can you do? something to think about....i just finished reading, and have been challenged and encouraged by, the little book, "she did what she could" by elisa morgan.
this book is based on Mark 14:3-9 in the Bible, and centers around the story of mary of bethany, the sister of martha and lazarus (who was raised from the dead), anointing Jesus' head with an expensive jar of perfume. this happened a little over a week prior to His death on a cross, His sacrifice for the sins of the world. she was quickly criticized by some of the men present for the lavish gesture; the perfume was valued at approximately a year's wages. they scolded her, saying the money from the sell of the perfume could have been used to feed the poor. Jesus quickly defended her actions, telling them that "she did what she could," anointing his body for his imminent burial. under the circumstances there was nothing else she, a woman, could have done, and her actions were lauded by Jesus as a "good thing..."
this book has helped me evaluate my life right now. is my life what i thought it would be? no; by this point i had hoped to be in the process of writing/publishing a book. but i'm where God wants me to be....a stay at home mom to three sons, one who happens to have a little something extra....Down syndrome! without a doubt, i know i'm right where God wants me!
but am i doing all i should be doing? probably not; it's a busy life and i must pick and choose daily what i'll attempt to accomplish! but i do realize that i am doing what i can do. i can love my family and take care of them and their needs. i can make sure wyatt gets all the therapies and doctor's appointments that he needs. and the list goes on....
i can raise awareness about Down syndrome by blogging and talking to people i encounter daily about wyatt's Ds. i can support and encourage my friends locally, as well as my friends online who have children with Ds. i take seriously this responsibility, and feel that it's a tremendous blessing to "share life" with other families who've been blessed with a loved one who has Down syndrome....because we need each other!
this book was very freeing in emphasizing that we can't do everything, but we can do something! i'm doing what i can.....what about you?
this book is based on Mark 14:3-9 in the Bible, and centers around the story of mary of bethany, the sister of martha and lazarus (who was raised from the dead), anointing Jesus' head with an expensive jar of perfume. this happened a little over a week prior to His death on a cross, His sacrifice for the sins of the world. she was quickly criticized by some of the men present for the lavish gesture; the perfume was valued at approximately a year's wages. they scolded her, saying the money from the sell of the perfume could have been used to feed the poor. Jesus quickly defended her actions, telling them that "she did what she could," anointing his body for his imminent burial. under the circumstances there was nothing else she, a woman, could have done, and her actions were lauded by Jesus as a "good thing..."
this book has helped me evaluate my life right now. is my life what i thought it would be? no; by this point i had hoped to be in the process of writing/publishing a book. but i'm where God wants me to be....a stay at home mom to three sons, one who happens to have a little something extra....Down syndrome! without a doubt, i know i'm right where God wants me!
but am i doing all i should be doing? probably not; it's a busy life and i must pick and choose daily what i'll attempt to accomplish! but i do realize that i am doing what i can do. i can love my family and take care of them and their needs. i can make sure wyatt gets all the therapies and doctor's appointments that he needs. and the list goes on....
i can raise awareness about Down syndrome by blogging and talking to people i encounter daily about wyatt's Ds. i can support and encourage my friends locally, as well as my friends online who have children with Ds. i take seriously this responsibility, and feel that it's a tremendous blessing to "share life" with other families who've been blessed with a loved one who has Down syndrome....because we need each other!
this book was very freeing in emphasizing that we can't do everything, but we can do something! i'm doing what i can.....what about you?
Saturday, October 2, 2010
Stretch Me Lord....
isn't it amazing how God opens a whole new world to you when you have a child born with Down syndrome? i know all these wonderful parents, self-advocates, support groups, national organizations, buddy walks, step up with downs walks, etc. were there before, but i didn't know about them. or maybe i didn't want to know about them... didn't want to look too long at a world that i didn't want any part of? sad to admit, but i'm sure that i was scared of the unknown, the challenges; a life different from what i knew. i know i didn't want to look too long at someone with down syndrome, didn't want anyone to think i was staring; that i felt sorry for them...
little did i know that a great percentage of those parents i saw certainly didn't want me to feel sorry for them because they had been given a gift. a precious child chosen by God to be theirs....for whatever reason! i know that was the one thing in the beginning that i didn't want people to do....feel sorry for us. was it pride that made me feel that way? probably....i've always had issues with that...but that's another story! i hated to hear someone say "i'm so sorry" when i told them about wyatt's diagnosis. now i know that for the most part they just didn't know what to say, they were doing their best.
yet with as much as i've learned about down syndrome, i know that there are so many other disorders, chronic illnesses, diseases, disabilities....the list goes on...that i know nothing about. but my world and vision have grown exponentially....i am so much more aware of the needs of others around me. and i'm so thankful for this new awareness; thankful that our hearts have the amazing capacity to be stretched and tugged and enlarged beyond what we ever imagined was possible....
little did i know that a great percentage of those parents i saw certainly didn't want me to feel sorry for them because they had been given a gift. a precious child chosen by God to be theirs....for whatever reason! i know that was the one thing in the beginning that i didn't want people to do....feel sorry for us. was it pride that made me feel that way? probably....i've always had issues with that...but that's another story! i hated to hear someone say "i'm so sorry" when i told them about wyatt's diagnosis. now i know that for the most part they just didn't know what to say, they were doing their best.
yet with as much as i've learned about down syndrome, i know that there are so many other disorders, chronic illnesses, diseases, disabilities....the list goes on...that i know nothing about. but my world and vision have grown exponentially....i am so much more aware of the needs of others around me. and i'm so thankful for this new awareness; thankful that our hearts have the amazing capacity to be stretched and tugged and enlarged beyond what we ever imagined was possible....
Friday, October 1, 2010
A Great Start!
what a great way to kick off national down syndrome awareness month! the mexican fiesta at carol's home was truly delightful! noel, kristen and i were treated to delicious food in a beautiful home provided by a gracious hostess! carol really knows how to entertain!
it's so fun to get together with these ladies; they are the mothers of michael(2), logan(4) and chloe(5). they have other children as well, but these are their children who were born with that extra chromosome that makes THEM so special and that draws US together. otherwise, our paths probably would not have crossed, and these friendships would not have formed!
i can't help but laugh at our conversations, though. sometimes we just about talk over each other, we have so much to say! (we're a talkative bunch anyway!) maybe a monthly meeting is just not enough! we have so much to share about doctors, therapists, school, and life in general.
we are truly blessed to have each other in this unexpected journey that we find ourselves on!
it's so fun to get together with these ladies; they are the mothers of michael(2), logan(4) and chloe(5). they have other children as well, but these are their children who were born with that extra chromosome that makes THEM so special and that draws US together. otherwise, our paths probably would not have crossed, and these friendships would not have formed!
i can't help but laugh at our conversations, though. sometimes we just about talk over each other, we have so much to say! (we're a talkative bunch anyway!) maybe a monthly meeting is just not enough! we have so much to share about doctors, therapists, school, and life in general.
we are truly blessed to have each other in this unexpected journey that we find ourselves on!
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