Sunday, October 31, 2010

31 for 21: Day 31 21 Things I Love About Wyatt....

1.   his sweet spirit...he is such a precious baby boy!
2.   how hard he works to do things that are so easy for other kiddos...without complaint!
3.   his delightful laugh.....sometimes it's more of a chuckle!
4.   the love he has for his brothers....and that they have for him!
5.   his sweet, always ready, smile!
6.   how he loves people.....all people!  he is very people oriented!
7.   his cute little commando crawl that gets him anywhere he wants to go! even though now he's
crawling on all fours mostly!
8.   how he brightens any room he's in....home, dr's offices, church....the list goes on!
9.   the love he has for my parents (g-mama and g-daddy)....he just lights up when he sees them!
10. how cuddly he is!  he's a real "cuddle-bug!" 
11. his silly faces....i've got to start catching them with the camera!
12. how he has drawn people together!
13. his love and interest in's so funny when he takes a book away from us and
turns around with it,  like "just for me!" "read" on his own!
14. the ministry i believe that he will have throughout his life!
15. how he has helped me realize there is more to life than "perfection"....which is SO overrated!
16. his beautiful hair!
17. how he gets SOOOOO excited about the littlest things!  
18. the unconditional love he has for me...even when i don't deserve it!
19. how he claps for's so adorable!   like, "look at me...did you see what i did?"
20. that extra twenty-first chromosome!
21. that he is our special, unexpected, surprise bonus baby gift from God!

Saturday, October 30, 2010

31 for 21: Day 30 Life is Good...We are Blessed!

wow!  have i really blogged every day this month?  i can't believe how this month has flown by!  wyatt is napping now before we get him dressed for the afternoon's festivities.  we'll probably hit a fall festival or two, and then go by my parent's house and sister's house for them to see the boys.  ethan will be dressed up like a taco bell employee......he's working at taco bell tonight~   i convinced forrest to pair up with wyatt this year....he will be a knight and wyatt will be the dragon!   i'm sure they will be so cute!   our church fall festival is tomorrow night, and it is always a lot of fun!   

tim and forrest have spent most of the morning in forrest's room cleaning out.  seriously cleaning out!   one thing that several parents of adults with Down syndrome have told me is how neat and clean their kids are!   yay!  there's hope yet!   maybe wyatt will help forrest learn some organizational skills and encourage more tidiness!   ha ha ha!   if he'll just keep his own room clean i'll be thrilled!  

most often i hear how "sweet" children with Ds are!   this from people who don't have a child with Ds....parents of kids with Ds who are older than wyatt just laugh at this one!   so far he is sweet, but he's also exhibited quite a stubborn streak!   if he doesn't want to do something....good luck!  and he's strong as an ox!   not sure what i'm going to do with him when he gets bigger!   pray for a cooperative spirit!  

we've learned so much in the past 16 months......we knew virtually nothing about Ds!   and we've had the opportunity to share and educate so many of our friends and family as well.  i know that we have much to learn as he grows and goes through different stages....just like with our older children!   they are complete opposites of each other, and we've had to learn how to parent each of them differently as well!   the biggest difference that we have had with wyatt is all the medical interventions.....our older boys were exceptionally healthy!   we have been blessed with three wonderful boys......and are so thankful that God entrusted us with our little wyatt, who was never in our plans.....but always in God's plan, which is so much greater than ours! 

Friday, October 29, 2010

31 for 21: Day 29 How Much Does Wyatt Hear?

today turned out a little differently than i expected.  that happens a lot with wyatt.  i had to "play doctor".....  at least i had to decide if he needed to see a doctor!   ongoingly, i am not sure about wyatt's hearing, if there's fluid in his ears, if he has an ear infection, if he's congested......the list goes on.   it's so hard to tell with wyatt, he just does not express much pain, and has had an ear infection with no real symptoms.   he has only been diagnosed with one ear infection, but i am concerned that he may have had other infections that we were not aware of when he has been congested in the past. 

all that leads up to today.....actually last night.  as we were playing, wyatt did not respond to the squeaky sound of his discovery toys blue ball....and he was wearing his hearing aid.  we tried over and over and got no response.  he also had a glob of yellow/green snot at one point after he got upset about something.  this week he has also sounded kind of "chokey;" like he was gagging on drainage.  he was also playing with one ear, poking at it.  this morning i told his developmentalist (who is also an RN) all this, and she tried the blue ball again, with no response.  she recommended that i take him in and have him checked.  

i am glad i did.....the ENT saw him within 30 minutes, and prescribed an antibiotic for his sinus issues.  we talked a while about wyatt's adenoids and eustachian tube, and  my concerns that he might have blockage of his eustachian tube due to his adenoids.  he decided to order an x-ray of his adenoids, the only way to determine if his adenoids are large.  we know wyatt's tonsils are large, but he told me that they do not remove tonsils at this age.  ugh!    but they do remove adenoids if they need to be removed.  yay!   so we go back in 2 weeks to follow up on that.  

we also did a quick booth test there with our audiologist and he tested wyatt at around 20 decibals in his left year!  yay!   praise God!   previously he has tested at 35+, so this is improvement.  our audiologist also indicated that the booth at that office is not that great for testing, which means he might test better in their office.  i'm glad he tested that he is hearing better, but i am still concerned about the high pitch of the ball that he does not respond to.....maybe it's the congestion.....or not.....i just wish there were definitive answers somewhere!  

kiddos with Down syndrome often have hearing is usually conductive, which means it might not be permanent.   often as they grow, the ear canals enlarge and allow for better hearing.   they also often have problems with sleep apnea, which can be treated with the removal of their tonsils and adenoids, which might be large.   so that's just another medical specialty that i am working on!    

Thursday, October 28, 2010

31 for 21: Day 28 Friendships are a Blessing.....

i've been encouraged this week.....two people that i didn't realize were reading mentioned how much they have enjoyed reading every mentioned that she hasn't been able to open her link this week and is disappointed.   another said that i'll have to keep up the daily posts!  that's the encouragement that i needed to keep writing.....thanks ladies! 

i am so blessed to have so many people who love and support us in this unexpected journey.  i know that i have blogged about some of them already, but i would be remiss to not mention two friends who have walked every step of this journey with me.   susan and shirley have been with us throughout.  they are the two first people i told that we were pregnant.  (and they were as shocked as we were!)    they are the two first people i told, sobbing, that wednesday afternoon when we got home from the hospital, that wyatt might have Down syndrome.  susan lives here and shirley lives in louisiana....i miss her so much!    they have been my shoulders to cry on, my encouragers, my supports, my friends.  

they have both given up so much to be there for us.  shirley would have gotten in her car and drove down here that wednesday afternoon if i needed her to....she offered.    she did come and stay with us for a week after wyatt was born, to help me.  she left her family behind to be here with us, which is not easy when you have 3 kids at home to make arrangements for.  she cooked, cleaned, shopped, and did so much for us while she was here.  she did the same thing after wyatt's open heart surgery.   i will never forget the sacrifices she made to be with me when i needed her.

susan made arrangements for endless meals to be provided for us after wyatt was born and after his open heart surgery.  she has been there for me in so many matter what, she will drop everything to do anything that i need!  she drove my parents and tim's mom up to atlanta for wyatt's open heart surgery.  again, no small task, having to make arrangements for 2 kids at home.  but she never hesitated to do that for us.  she was a tremendous support to us that week in atlanta, especially during the waiting.  she helped me "think" when i was too overwhelmed to process "stuff!"   

i do know how tremendously i am blessed to have these have so many of these friends!   christy and kym, who i've posted about previously....and so many others.   it saddens me to think that there are people who do not have the support system that i have.   our common bond is our love for Christ and our relationship with Him.  He brought us together at different times in each of our lives, and He continues to bless our relationships.  

Wednesday, October 27, 2010

31 for 21: Day 27 Wordless Wednesday....Pure Joy!

walking with "bubba" (forrest)

me and my dad!


the pure joy in wyatt's face in these pictures is simply beautiful! 

this is the pic we used for "wyatt's warriors" buddy walk team tag this year!

hanging out w/ethan and megan

Tuesday, October 26, 2010

31 for 21: Day 26 The Toy Store We Call Home.....

our house looks like a toy store!  it looks like toys r us exploded in our living room!   i know that i am not alone.  i've actually seen other homes that look just like ours!   it seems that just about every week one therapist or another brings a really cool toy for wyatt to work with.  "just" what he needs!   and then i'm off to get the next "must have" for him......much to tim's chagrin!    i think it's the "i've got to give him every advantage because of the Ds" mentality that causes me to buy whatever he needs developmentally at the time!   i actually do try to buy things that will last a long time and have multiple uses.....

we have TONS of books; wyatt LOVES books!  he sits and "reads" them a lot....he even says "open" when he opens the book sometimes!  we also have LOTS of balls; all kinds of balls.  big beach balls, little hard balls, medium size texture balls....wyatt loves balls, and throws the ball back and forth to anyone who will play with him!    and he loves musical toys....of all varieties!   from his baby einstein piano to his fisher price sing and play stage, to bells, shakers, etc.....the list goes on and on!   he'll sit and press the buttons on his baby einstein book and "dance;" rocking back and forth or side to rhythm with the music!   he's so funny!  

the list of toys goes on and on and on; of course it doesn't help that i actually saved lots of the older boys' toys.....they accumulated quite a few as well!   i was thinking this morning it would be good to have shelves somewhere so we could rotate toys on and off the floor....instead of having them spread out all over the living room!  oh well....he's only a toddler for a short time....  one day our floors will be clean and bare again, and we'll have a teenager "holed" up in his room watching tv, playing video games, texting his girlfriend.......sigh...

Monday, October 25, 2010

31 For 21: Day 25 Wyatt's Hearing.....

so wyatt received his bone conductive hearing aid last week.  i know that a lot of kiddos with Ds have mild to moderate hearing loss, and my goal is for him to speak as clearly as he possibly can.  the educational specialist at hope haven reminded me last week not to be so focused on his speech that i neglect other forms of communication (i.e. picture cards and signing).....i'm trying to remember that! 

bone conductive hearing aid

picture cards....

his audiologist is not convinced that he needs the bone conductive hearing aid.  his developmentalist and speech therapist think that if it helps him at all, then it's worth it.  i agree with them.  however, i am not sure how/when i will know if it is helping him!    i asked his audiologist this morning if he will give him the "booth" test to try and see if there is any improvement.  he said we can try that in a couple of weeks, once wyatt gets more used to it.  i THINK that he is responding to whispers on that side of his head, but i'm not sure.   he's probably only worn  it about 6 hours total since we received it about a week ago.  let's just say that he does not just leave it alone and go about his merry way!  he's done better with it than i thought, but it's a struggle. 

it does not look like i thought it would look; we were expecting the "baha" type that is worn on a stretchy "sweatband" type thing that wraps around his forehead.  this one is on thin metal strips that are like a headband over the top of his head, with the aid and receiver sitting behind his ears.  it does not look awfully comfortable; it has to fit rather snugly.  maybe he's getting in some good OT every time he "whips" it off his head!   every time i fit it back on him, i smile sweetly and say "thank you Jesus that Wyatt can hear!"  trying to convince him that this is a good thing!  

happy as can be! 

i'm anxious to see if there is any difference in his hearing test.  i wish that we could test him tomorrow....but i feel like i'm "bugging" our audiologist!   it would be nice to know if it's working!   last night the (very young) waitress at ihop asked us about it; specialists have recommended that her 3 year old, who has cerebral palsy, get an implant for mild hearing loss.   i'm glad that i was able to talk with her about it, from the little bit of experience and multitude of research i've done!   i love how God works through our life experiences to minister to and help others......

Sunday, October 24, 2010

31 for 21: Day 24 Looking After the Orphans.....

while the future for a child with Down syndrome born in the united states is virtually limitless, with so many opportunities available to them, the future for little ones born with Ds in other countries, particularly eastern european countries like the ukraine, is bleak.  for the most part, they are left at the hospital at birth, then placed in orphanages until the age of 4 or 5, at which point they are often transferred to mental institutions with little hope for a future.  reece's rainbow is an international down syndrome orphan ministry that seeks to match forever families with these precious children.   in the tremendous online Ds community that i am involved with, there are many families who are in the process of adoption through reece's rainbow.  we are admonished in Scripture to care for orphans: "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world" (James 1:27)

the cornish family has already adopted two children from the ukraine, are currently adopting a child with Ds in florida, and are in the process of adopting at least one, possibly two more children with special needs from the ukraine. to learn more about their adoption journey, visit their blog: or watch their video testimony: 

this poem, written by meredith, poignantly shares the plight of these little ones.

"While We Were..."
       by Meredith Cornish

While we were eating…
… they were hungry

While we were playing…
… they were restrained

While we were tucking our kids into bed…
… they were alone

While we turned up the heat…
… they laid in the icy cold

While we wrapped our children in blanket sleepers…
… they laid in their own excrement

While we sang songs and listened to music…
… they listened to the screams and cries of those around them

While we rocked our babies…
… they silently rocked themselves

While we hugged our kids…
… they scratched at their own faces and pulled their own hair for stimulation

While we cried over scraped knees…
… they moaned in their loneliness

While we brushed our daughters’ beautiful hair…
… they had their heads shaven to stave off the lice

While we fought off the flu with love and nourishment…
… they got the flu and went Home.

No longer suffering… but so many more still are.

In memory of those that have never felt the love of a family, but have passed away alone.

as painful as this is to read, i could not participate in 31 for 21 without blogging about the needs of these children.   it is amazing how God is at work in the lives of so many families who are already blessed with a little one with Ds, who are doing everything within their power to adopt and save other little ones with Ds!  

"Once our eyes are opened, we can not pretend we do not know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act." (Proverbs 24:12)

Saturday, October 23, 2010

31 for 21: Day 23 Buddy Walk 2010

well, our 2nd buddy walk has now come and gone.  it was a very fun day!  our team had a great time walking and hanging out together on this beautiful sunny saturday in florida!  we spread out a couple of blankets and just really had fun visiting with one another.  our little wyatt is so loved!  we are tremendously blessed with friends who love and support us!    and i will never forget all of us walking along doing the motions to "YMCA" ...

it was a lot of fun to meet a couple of new families who have babies with Ds!   it's fun to know that our kiddos will have each other in years to come.... i know that as wyatt gets older he will be so excited on buddy walk day...that will be even more fun!  it was great watching the older children visit and play together; they get so excited!   the joy on their faces is priceless....

we saw a clip of me walking wyatt around at the buddy walk on the news report tonight....they did an awesome piece!   lots of good info about Ds!   we also found out today that wyatt is on the cover of the calendar for 2011!  woo hoo...very exciting!   an overall terrific day....

next year i'll be walking the buddy walk! 

taking it easy in my wagon!
waiting for the awards ceremony!

Friday, October 22, 2010

31 for 21: Day 22 Buddy Walk Here We Come!

tomorrow is our local buddy walk.  in case you're not familiar with it, "the Buddy Walk® was established in 1995 by the national down syndrome society to celebrate Down syndrome awareness month in october and to promote acceptance and inclusion of people with Down syndrome" according to the NDSS website.  it's so fun to join with other families who have kiddos with Ds for this fun day!

last year i was VERY nervous at this point, having never participated in a buddy walk before!  we did have a HUGE team last year...almost 60 people...and we raised the most money for our group!  we had tremendous support from our church least 45 of those folks were members of our church!   we were overwhelmed with the support that we received!   it was a beautiful and fun day...we felt very loved and encouraged!  

this year we have a much smaller team....about half that size!   i know that many folks are busy, and i just didn't "push" for anyone to join our team.....i put out the announcement about the walk, and let it go at that!   our group is not using the online mechanism for fundraising, which makes a huge difference in the financial aspect.   the economy is very different this year too, so i didn't want anyone to feel obligated to join us!    i don't know how other walks go, but you pay to walk in ours.....curious if that's the "norm"....

i'm looking forward to seeing our friends with kiddos with Ds.....and to spending time with our friends and family.  it's supposed to be a beautiful day!   i know that as wyatt gets older, this event will mean a lot to him, and i look forward to many future buddy walks.....

wyatt's first buddy walk last year!  
what a cutie!

Thursday, October 21, 2010

31 for 21: Day 21 Hope Haven Evaluation

so lots of folks have asked how wyatt's evaluations at hope haven went yesterday.....for those of you who don't know, hope haven is the only Down syndrome clinic in florida, and is located in jacksonville.  i've had lots of friends who highly recommended a visit there for wyatt.  we feel very blessed to have had the opportunity to full a cancelled appointment slot much earlier than our scheduled appointment of april 2011!  

we loved hope haven!  everyone there is so kind and gracious.  upon my frantic arrival (i was running late!), i rushed up to the door pushing wyatt's stroller and was met by a young man with Ds who had jumped up to open the door for this frazzled mom!    what a great way to start a busy day!   everyone just encouraged me to slow down and catch my breath as we got checked in!   i liked that there were not 20 people in the waiting room....there was one other mom with 2 kiddos, and the young man!   i knew that we would receive wonderful individualized attention!   and we did!

we started with the educational evaluation; wyatt playing on the floor while i told laura all about wyatt and the therapies he already receives!    she enjoyed and appreciated his focus on playing alone.....and his acceptance and exploration of the new toys she introduced!   she gave me ideas that we need to focus more on....mainly picture cards.  soon after wyatt was born we worked more with that, but as therapies mounted, i slacked off on that area.  i plan to really focus on that again, especially on cards more pertinent to his daily life.  she highly recommended that for his communication skills.   as i expressed my desire that he speak clearly, she gently encouraged me to not allow our speech work to impede his other means of communication!  (i needed that!)

we were whisked off to speech eval with melanie.  she played with wyatt as we talked about the skills he already has.  she also encouraged what she called "sabotage," where you withhold an object until he responds in some way.  she also worked on some oral motor things like drinking from a straw and using a z-vibe and jigglers for more oral stimulation to "wake up" his mouth more.  he really seemed to enjoy the jiggler, especially on the tooth that we discovered popping through!    

occupational therapy was next with myesha!  she is a lovely young woman that wyatt took to immediately!  she played fun things with him, working on fine motor skills, discussing sensory processing issues with me (he really only has sound sensory issues, i think!  he hates loud sounds.....).   she was very pleased with his drop/release, and gave me lots of good ideas to work on in many areas.....ripping paper, wadding up paper to develop hand strength; laying on a skateboard and pulling himself along; more weightbearing on his hands, etc.   much to do!

finally we met with monica for physical therapy!   wyatt was exhausted by this time!   but he actually did very well.  she had him walk behind a weighted little tikes shopping cart, since he's too tall for most push toys!  he did great with that.  she also encouraged more bench work, reaching for things above his head, standing from kneeling position, and lots more core work on the exercise ball to strengthen him to be able to hold himself up to walk.  

the only real concern that they expressed for wyatt was that he tends to tilt his head slightly to the left.  there could be several causative factors that we will pursue, including occular, vestibular (inner ear) and orthopedic (not likely).....i've already spoken to our local team and we will be discussing that further next week! 

we ended the day back with laura, our educational evaluator, who is FABULOUS!   she was very impressed overall with wyatt, and thinks that we have done great things with him.  he works very hard and is a terrific "patient!"    he loves new challenges, and is so easy to work with!   of course, he was exhausted and was asleep by the time we got to the van.....and my head was "spinning" with ideas to share with tim and our team!   it was a fantastic experience, and i'd go back next month if i could!   but we'll see them again next year and go from there!   

Wednesday, October 20, 2010

31 for 21: Day 21 Wordless Wednesday.....Jacksonville/Hope Haven Trip!

"the boys" playing....wyatt, caleb and mr. david!

"this is such a fun game...makes great music too!"

"too early in the morning to say goodbye, ms. karen!"

ms. melanie...speech evaluation

ms. myesha...occupational therapy

ms. monica....physical therapy

"why is she doing this to me?"  
so tired...end of 4 hours of evaluations!

Tuesday, October 19, 2010

31 for 21: Day 19 Hope Haven Here We Come!

i don't have much time to make this post....i'm a little "OCD"....must post, must post, committed to posting everyday for Ds awareness month!   haha!     so today ended up looking nothing like i thought it would!  as i was getting ready to take forrest to the dr this morning, the phone rang and it was hope haven, the Down syndrome clinic in jacksonville.  they had a cancellation for TOMORROW!   so after a brief phone consult with tim, we accepted the appointment.   after forrest's appointment, i sent him home with my mom and flew through the house packing for jacksonville!

amidst the chaos of packing, there was a "flurry" of texts between myself and my facebook friend karen prewitt (mom to caleb, 3 1/2) who had graciously offered her home to us several weeks ago!  little did she know that i would take her up on the offer with about 8 hours notice!  wyatt and i were on the road by 1:30 pm....he was awake until about 3 pm and then slept until about 5:45~a terrific traveller!  

here i sit in karen's house blogging.....never would have happened with wyatt's diagnosis!  we never would have i consider her another dear friend.   we've met in person a couple of times at conferences this past summer, but had not spent time together like this!   we had a blast tonight!   her hubby david played and rolled in the floor with our was so fun!     the boys were so cute together!   wish i had my camera cord to post pics here.....oh well!    

again, i am so blessed.  God has broadened my perspective and "enlarged my territory....."  with a little extra chromosome that i never suspected would change my life in so many terrific ways!    off to complete the paperwork for hope haven.....

Monday, October 18, 2010

31 for 21: Day 18 Friends Linked by an Extra Twenty-First Chromosome

if you've been reading for a while, you might remember the pic that my friend cassie had printed on stretched canvas of wyatt and brennan kissing....around the sides of the canvas she had printed "friends linked by and extra twenty first chromosome brennan + wyatt". it is adorable! if you missed it, here it is:

i love this picture!  it is so sweet and i have it hanging in my "blue" of our living areas....i didn't just want to "hide" it in wyatt's room....i want everyone to see it!  
we met cassie and her daughters brennan and logan at a chick fil a in madisonville, louisiana this summer on our vacation.  we'd been facebook friends, but had not met in real life!  we instantly connected and share a special bond!   i was in tears when i received this unexpected gift in the mail!  i treasure it dearly!  
all that to say....i am so blessed by my friends who i would never have met them had it not been for wyatt's diagnosis of Ds.   i am so thankful for our cyber Ds community!   they are a great source of information, support and encouragement to me....we are indeed "friends linked by an extra twenty first chromosome!"

Sunday, October 17, 2010

31 for 21: Day 17... Who Will Wyatt Marry?

probably one of the things that worried me most when we received wyatt's diagnosis of Down syndrome was the misconception that he would never get married.  one of  the first things his pediatrician (who has thankfully retired!) told us was that "they are all really sweet children....he'll do little things you'll be so proud of.....and he'll always be with you...."   um, not really what a parent of a newborn wants to hear, is it?    as much as we love our children, we know that they are eventually supposed to live independent, fulfilling lives, right?  

i was so excited the very first time that i heard about a couple with Ds who were married.  i stumbled across the story of josh and bernadette, who were the first couple with Ds in tennessee to be married.  i was thrilled!  and as i read and watched their video, i was so encouraged!   i love what josh said, ""Our responsibility is, grow up. Be a young man and young lady.  We together. It's nice together. Sometimes it's good and bad. We work it out."  they have been lifelong friends, since they were preschoolers, and have been married almost 3 years now.  and their last name is PUTMAN!!!!   (our last name!) 

because i love being married, i want everyone to be married!  when i have single friends, i always try to think of a "love match" for them!   i have always looked forward to our older boys being married, and pray frequently for the young women that God is preparing to be their wives!     and i now know that although it has not traditionally been the "norm" for adults with Ds to get married, more and more it is happening, especially due to their longer life spans!   just this past week the documentary "monica and david" premiered on hbo....a documentary about another young married couple with Ds!   i think the publicity this is giving to the Ds community will only make marriages between adults with Ds more and more acceptable and expected! 

and although i know that a young married couple with Ds  needs lots of extra support from their families....we will be more than happy to give that support to wyatt and his bride....whomever she might be!  he has "girlfriends" around the country....louisiana, oregon, new jersey, texas, and of course name a few!    will he marry brennan, melody, grace, isla, annabella, or another precious girl we haven't even met yet?  only God knows.....but i do know that it is a very real possibility for wyatt....and that makes me very happy.......peace!   

Saturday, October 16, 2010

31 for 21: Day16 But He Doesn't "Look" Like He Has Down Syndrome....

last night was our buddy walk t-shirt party.  there weren't too many people there, but 2 of my best local Ds friends were there with their husbands and their kiddos, and we had a blast!  it is so fun to be with friends who are sharing this unexpected journey, who fully understand what you're going through!  make no mistake, i have other best friends, friends who don't have a child with Ds, and as much as they love, support and listen to me, they don't know what it's like to have a child of their own with Ds!   i know that i am truly blessed to have SO many friends who encourage us!

as we were talking last night, i mentioned that i recently saw a baby with Ds out shopping, as i blogged about earlier this week.  my friend jessica laughingly looked at her husband and remarked on how when annabella was born, she didn't really look like she had Ds.  and she was always kind of surprised, maybe a little sensitive, when someone recognized and commented about her daughter having Ds.   i know exactly what she means.  when wyatt was born, he looked just like our other boys, seriously.  while waiting on his karyotype, i tried to convince myself that he didn't have Ds, because he didn't "look" like he had Ds!   i couldn't imagine how anyone could recognize that he had Ds!

all three couples then started talking about how our young kids seem to be "growing into" looking like they have Ds.  sometimes it's just a certain look they have, a lot of times it's when they're tired.  does it matter?  no...they have Down syndrome....whether they look like it or not!  it's just good to know that we're not alone in our myriad of feelings about our kiddos and their Down syndrome.....feelings that change frequently....often set off by the innocent comment of a stranger.....

Friday, October 15, 2010

31 for 21: What's Wyatt Been Up To Lately?

what's going on with wyatt?   today was our developmental therapy day....i love this day!  vicki helps me stay on top of so many things!   i feel like she has such a wide range of expertise, and i'm so glad that she shares that with us!   she uses lots of charts that have "age ranges" for specific "milestones" or activities.  i like to be able to check things off of my own "to do" lists, and she likes to check things off wyatt's lists!  i especially like it when she has to flip a few pages to get to a "higher" level than she was anticipating!   although i don't have those lists....i wish i did... i will share what wyatt's been up to lately!

wyatt jabbers and babbles A LOT!  he's said mama and dada for several months; bubba sometimes.  my parents are "g-mama" and "g-daddy"....they pretty much get mama and dada too!    he's starting saying dog a lot lately, and elmo.  the other night he said apple with tim, when they were looking at his "b is for bear" book.  (haven't heard that yet myself....)  he said hello the other morning when we opened his door.  sometimes he says ball,  he even said a form of "flower" this week in therapy.    now, does he says those things all the time?  NO....but can he?   YES!   it just depends on his "mood," i guess!   silly boy!

wyatt LOVES to play ball....we have lots of different balls, weighted, bumpy, flashing, "O ball," the list goes on.....he loves to throw and catch the ball reciprocally! (this really impresses his developmentalist!) he would play ball about as long as anyone is willing to play it with him! ( a LONG time!) here's a video of him playing "yell ball" with forrest....

wyatt started "commando" crawling at 12 1/2 months...while we were on vacation!   he can get anywhere he wants to!   lately he is getting up on "all fours" a lot more....taking a few "true" crawls before reverting to his "commando" crawls.   he "walks" assisted all the time.  he's constantly pulling up on us to "walk".....we just hold his hands and away he goes!   he also is pulling up more on other things in his environment, including the handle on the bathtub!   
wyatt loves to play...he especially loves to play with his musical toys!  the baby einstein piano is an all time favorite of his, as well as the fisher price little superstar sing a long stage!   he loves his bell and his shaker toys as well!  he really enjoys his books that have buttons that play music or make sounds!  
and he LOVES books!   "how big is elmo?"   "b is for bear" and "little feet like" are some of his favorites!   he gets very excited when we get out books to read.  even this morning i found him rummaging through his books with 6 or 8 spread out around him!  he's so cute when he "reads"....

this is just a little bit about what wyatt's up to these days....i'm sure i'll think of lots more as soon as i post this!  he's doing terrific....we're so happy with how much he seems to learn every day!  his therapists are very pleased as well with his progress.....

Thursday, October 14, 2010

31 for 21: Prenatal Diagnosis.....90% Abortion Rate

after spending 15+ months daily with a baby with Down syndrome, and countless hours with other babies, children and adults with Down syndrome, i continue to be appalled at the exceedingly high number of abortions performed on babies diagnosed with Ds.  it is estimated that 90% or more of american babies diagnosed with Ds prenatally are aborted.  it is absolutely sickening to think about.

i find myself asking others "did you have a prenatal diagnosis?", just out of curiosity. we chose not to have prenatal testing because we knew that it didn't matter what the prenatal tests showed, God had chosen to give us our precious baby.....but friends have told me that it helped them to have the prenatal diagnosis to be prepared when their baby was born, having already gone through the "grieving" process. i've found that some people believe that others ask that question because they wonder how you ended up with a baby with Ds, because if given a prenatal diagnosis, you would surely "terminate," right? UGH!!! i've never felt that type of attitude in that question, but maybe i'm just naive!

when you consider the statistic that 1 out of 733 babies are born with Down syndrome, and there are 90% more babies with Ds who were aborted, that's a lot of parents who have been affected by Ds.  there are a lot of parents walking around who have aborted a baby with Down syndrome.  parents who see our precious little ones with Ds, many of whom i'm sure have regrets for the choice they made. who grieve for the baby they chose to "terminate."   i'm sure they are surprised to see the joy that our little ones bring to our families, and to so many others with whom they have contact.   they are probably surprised to see how fulfilling and wonderful their lives can and will be.  we have great hopes for wyatt's future.  it is such a tragedy that others choose a different path daily....what a shame that our society has allowed the atrocity of abortion to gain such a foothold in our country; an "easy" fix to an inconvenience......

Wednesday, October 13, 2010

31 for 21: Wordless Wednesday

"no mom, it wasn't me who knocked the tree over!  really!"

"i'll make a quick getaway!"
"i love being outside!"

see-sawing and swinging at the park!  

our happy wyatt!
he loves to laugh and clap when he's pleased with himself...
which is most of the time!  


Tuesday, October 12, 2010

31 for 21: Ronald McDonald House Charities

another of the many things i might not have experienced had wyatt not been born with Down syndrome is the ronald mcdonald house. wow! what an amazing charity that is! when wyatt had his open heart surgery in atlanta, we were told that we might be able to stay in the ronald mcdonald house if there was availability. i did not realize what a blessing that "house" would be to us!

the first night we were in atlanta we stayed in a hotel near the hospital for the "bargain" rate of over $100. we knew that we would have at least 2-3 more nights there, if we were not able to get into the ronald mcdonald house. i must admit that i was a little scared about exactly what a ronald mcdonald house might look like....i envisioned an old house, to be honest with you! boy was i surprised!

we drove around looking the ronald mcdonald house and the hospital the first night we were there. WOW were we surprised when we drove up to a "posh" looking hotel that was the ronald mcdonald house! it was beautiful....and huge! its interior was beautifully decorated as well! atlanta's first ronald mcdonald house with 16 bedrooms, the 4th in the world, opened in 1979. since then ARMHC has expanded to two houses for a total of 61 bedrooms. ARMHC is proud to have served more than 35,000 families over its proud 30 year history!

we were so happy to be accepted into the ARMHC on the second night of our stay. we stayed there 4 nights, for the truly bargain rate of $20 per night (which i believe they waive if you are unable to pay). the rooms were pretty bare, but very comfortable! there are living areas throughout the downstairs and on each floor with comfortable couches and chairs, televisions and books available for use.

on the ground floor is also a HUGE kitchen with lockers for personal food storage, as well as shared food. every night different groups provide meals for the residents of the house. groups from churches, service clubs, offices and corporations graciously give of their time and resources to minister to families in their time of need. the 2 nights prior to wyatt's surgery we enjoyed delicious meals with our extended groups of family and friends as well....they insisted that we all eat! it was such a relief to not have to go out to eat at the end of a long day! it also gave us the opportunity to get to know other residents of the house!

i will never forget our experience at the atlanta ronald mcdonald house, and highly recommend it to families facing surgeries and other long term hospital stays....

Monday, October 11, 2010

31 for 21: "Perfect in Mind, Body and Spirit...."

my perception of "perfect" has changed so much in the 15 months since wyatt's birth. we had a dear friend who was our sunday school teacher several years ago, and when he prayed for a woman who was pregnant, he would pray that their baby would be born "perfect in mind, body and spirit." that sounded like a great way to pray for a baby.... and i started praying the same way for many years. i'm sure i even prayed that for wyatt....

i mentioned this to a friend recently, as i struggled over how to word praying for an unborn baby. i didn't feel like i could pray that "perfect in mind, body and spirit" prayer since wyatt had been born with Down syndrome. she quickly pointed out that wyatt was born "perfect" just as God intended him to be. perfection is overrated....God's and man's perceptions of perfect are likely not the same thing...not that i can speak for God by any means.

i know that wyatt having been born with Down syndrome was exactly God's plan for his life and ours. i find myself now praying for other's babies that they will be born "perfectly as God intends them to be...." because His plan is so much greater than ours..."He is the Rock, His works are perfect, and all His ways are just. A faithful God who does no wrong, upright and just is He." (deuteronomy 32:4 niv)

Sunday, October 10, 2010

31 for 21: Holland is a Lovely Place.....

i've never posted this poem on my blog, and thought today would be good day. i love this poem! i first read it while sitting in books a million with tim and wyatt, who was less than a week old, desperately looking for any books we could find on Down syndrome. we were waiting for the results of his karyotype, and were searching for information. the only book i found was Road Map to Holland by jennifer graf groneberg, and this poem was the basis for her title. i love this poem and have shared it with many moms since i discovered it.....

Welcome to Holland
by Emily Perl Kingsley

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. Michelangelo's 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.

Copyright © 1987 by Emily Perl Kingsley
All Rights Reserved

holland is a lovely place....i've met so many fantastic people's not what i was expecting, but lovely nonetheless!

Saturday, October 9, 2010

Day 9:31 for 21.....Beautiful Babies....

i was shopping today, and as i was leaving ulta, this family was walking in with a baby in a stroller. a beautiful baby girl... with Down syndrome. i'm positive that she had Ds. but i was in a hurry, the guys were waiting in the van for me. i didn't have time to figure out how to approach them. without appearing to stalk them. i think i may have spoken to the mom on the phone several months ago, for our new parent outreach, but have never had the opportunity to meet them in person. but it might not have been them....

so, what do you do? last year when we were waiting to receive the definitive Ds diagnosis for wyatt, tim and i saw a young woman in target with two beautiful little girls, one i was certain had Ds. i now know her through our local support group and consider her a dear friend...her daughter annabella has Ds; she's a year older than wyatt. but i didn't say anything to her then....a complete stranger....

last spring i was in jcpenney and saw a another woman with a beautiful baby boy....i knew by looking at him that he had Ds. wyatt's occupational therapist had given me the name and phone number of a "new baby" with Ds; clayton, whose mom is april. i had left them a message but had never spoken to them.... as she and i exchanged our "oh what a cute baby...." compliments, i asked her son's was clayton! i said "and you must be april...." we hugged and made plans to get together soon. and we did. and i'm now blessed to call her a close friend!

but sometimes it's really hard to tell with babies if they have know for sure just by looking at them. but i usually have a pretty good idea... it's just so hard to know what to say....what if i'm wrong and their baby does not have Ds? then what do i say once i've stuck my foot in my mouth? what do you do?

Friday, October 8, 2010

Day 8: 31 for 21: A Thyroid Crash Course!

meet a new specialist, learn something new! yesterday we met dr. hsiang, the chief of endocrinology for nemour children’s clinic (Pensacola). she is an extremely intelligent woman who was very informative. we received a “crash course” in the function of the thyroid, and how important its proper functioning is, especially in children with Down syndrome. not that i fully understood all that she was saying (she even drew pictures) but all i needed to hear was that elevated thyroid is related to impaired cognitive development! i know i’ve read this before, but somehow had forgotten that fact. it is especially important in regards to young children, birth to age 3; the critical time when the brain is developing. that is why it is so important that their thyroid levels be tested every 6 months.

at this point wyatt’s level is only on the “high side of normal,” so she is going to keep a close watch on his levels. he was tested at 13 months (yes, i delayed his well-check appt by 1 month! july was BUSY!); we will test him again next month at 16 months. She also wrote orders for a bone age study that can help evaluate how fast or slowly wyatt’s skeleton is maturing, which can help her diagnose conditions that delay or accelerate growth such as hypothyroidism. he did terrific holding his little hand on the table for the x-ray! so cute! (why didn't i get a picture of them getting his picture??? oh yeah, i was holding him!)

today i will call our new pedi to have wyatt's 6 month thyroid bloodwork sent to dr. hsiang for further comparison. she will then have 2 bloodwork results to start tracking wyatt’s thyroid function! wyatt is off (above) the down syndrome growth charts in both height and weight, but not in his head circumference. i think it’s probably because of the smaller head size, as well as his “sluggish bowels” (that can be an indicator of hypothyroidism) that she ordered the bone scan….i’ll be anxious to get those results!

i'm sure it's this way when you have a child with any syndrome, illness, or disease, but just when i think i've kind of got things under control; i've researched, asked questions, read tons of stuff, etc..... i realize that i have so much to learn!

Thursday, October 7, 2010

Day 7: 31 for 21....Medically Speaking

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……

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!

Tuesday, October 5, 2010

All Babies are Blessings...

a baby is such a 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 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 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 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 "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?

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....

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!