Tuesday, December 28, 2010

Are You Trying to Slow Me Down, Lord?

well, i blogged night before last about comparisons.....and i was blessed beyond measure by the responses of encouragement that i received!  my sweet fb friend, peggy, was surprised to hear that sometimes i am sad....these are her kind words:

" Oh, Penny, how sad this sounds, & it makes my heart hurt to think of you hurting for your sweet Wyatt. To me, he's just a darling little boy who's so totally loved & whose Mama takes great delight in each of his achievements. I know this ...probably won't help, but "not as fast paced" doesn't have to be a bad thing, really. Our world is far too fast-paced these days. With Wyatt, although he might be behind others his age, he's happy with the life he has, and you get to savor each and every step forward. So many moms these days live such hectic lives they totally miss their kids' first words, first steps, first everything. God knew exactly what He was doing when he placed Wyatt in your tender care----for you to be a loving caretaker & blessing to him & for him to be a blessing to you, & just maybe to slow things down & really be able to rejoice in each little bit or growth. I'll be praying for you that this sadness will be lifted and you can continue to rejoice in all of the beauty and goodness that is Wyatt. Sending love & hugs."

although i wish that i deserved all her "praises," i fall so woefully short of them..... but her kind words of encouragement did make me think.... i'm sure that God has often tried to slow me down....in more ways than one.  so often i can look back and see how i have rushed through our older boys' lives!   been in such a hurry to do other "things" that i have often missed the most important "things" that God has entrusted me with....my family....my precious boys and wonderful hubby!   and with wyatt, i'll have PLENTY of time to enjoy, treasure, and love him and all his milestones and accomplishments!    peace.....

Sunday, December 26, 2010

Those Comparisons.....

the younger boys and i travelled yesterday by plane to texas to see tim's family while tim and ethan drove.  isn't it funny how there are moments that you are reminded that your child has Down syndrome more than other moments?   the lady at the information desk at the airport commented on how cute he is....then went on to tell me that her mom works at MKL (our local school for kiddos w/special needs).   why does it surprise me when someone recognizes that he has Ds?  he looks so much like our older boys that sometimes it just catches me off guard!   and once i'm reminded, then i wonder what other strangers are thinking when they see wyatt, if they're feeling sorry for me....

i don't dwell on these thoughts often, but right now it's just a little more obvious to me developmentally that wyatt is behind other kids his age, especially in the area of walking.....i know all the statistics for kids with Ds and their varying ages of walking, but that doesn't make it hurt less to see kids younger than him running all over the place.  to hear them talking a lot more....the list goes on.   in our extended family i have a cousin with a child 1 month younger than wyatt, and when we were together on Christmas eve it made me a little sad.  funny thing is, i asked tim if it makes him sad, and he said "no...." end of story..... wish i was more like that!  

my friend carol and i were talking about those comparisons of our kids w/Ds....her son is almost 1 year older than wyatt, and he's kind of paving the way for wyatt at our local preschool.    as we were talking, she said it's like there's a "film" over his brain (i think that's the way she put it).... he's just a little slower in things.... and i feel that way as well....like wyatt's just not as quick to pick things up as other kids....which i know is the case, but it's still hard!    and it makes me sad.....and i know that i will see that more and more the older he gets....and i just wonder if/when it will get easier to accept.....that life for wyatt will be a little slower....not as fast paced, maybe.....

Saturday, December 25, 2010

Merry Christmas!

it's now midnight on Christmas eve.....actually VERY EARLY Christmas morning!  i have so much to be thankful for this Christmas, but i have just felt rushed through this entire month.  and i do not like that feeling.  we finally sat down together tonight and read the Christmas story from Luke....i am very thankful we made the time to do that!

we've had a lot going on lately; a couple of deaths in our extended family.  a local shooting at our school board meeting that could have ended in the death of 2 of our friends....only by the miraculous hand of God were they all saved.   we have so much to be thankful for....

i'm reminded again tonight of the great sacrifice that Jesus made for us, to forgive us of our sins.  we have so very much to be thankful for....

may God richly bless you and your family this Christmas.  may we each find the time to focus on the TRUE MEANING of CHRISTMAS.......the BIRTH of our SAVIOR.....JESUS CHRIST!   

and may there one day very soon be peace on earth......

Saturday, December 18, 2010

Down Syndrome: A Teenager's Perspective...

i have a facebook friend, liz, whose teenage daughter, heidi, has Down syndrome.  they live in the united kingdom.  this is what heidi wrote (independently) in response to a request from a friend who wanted to hear firsthand about what life is like for someone who has Down's syndrome:


"Hi i,am Heidi i,am 15 and i have downs syndrome. I go to tile hill wood school and has blue eyes and i,am very cute and...... has a wonderful and intelligent Personality and has a very kind and caring family .  I,am in year 9 i have lots of friends. I have been in the newspaper and on the radio because my dad wrote a book about me.


And i,am very happy to have such a wonderful sister as Suzie . I,am currentley choosing my options and i have chosen R.......E ,French, I have chosen french because my brother Tim has done it and can help me and he is very good at the french pronouncation. And also i have chosen History because it is very intresting. And i like history. Next school year when i start my gcses every thursday 9 till 3 i might be going to my brothers college to do a hair and beauty course.      Heidi"

liz and heidi
you sometimes hear that someone "suffers" from Ds.....as liz said in her post, "i don't think heidi SUFFERS from Ds, do you????"   it sounds to me like heidi has a lovely life that she lives to the fullest....and parents and siblings who love and support her!   heidi even has her own website:  http://www.heidicrowter.com/ ! 

liz is always such a tremendous support and encouragement to those of us who are relatively new to this unexpected journey of Ds.   our online Ds community has parents of kids with Ds of all ages, and we are so blessed to benefit from the experiences that they so freely share with us!   but to actually hear how a young lady with Ds describes her life is amazing and gives me much hope for wyatt's future.....

Sunday, December 12, 2010

The Whisperings....

i don't know if i'm just being particularly sensitive or not, but i have felt like there has been a lot of "whispering"  around me while i've been out shopping with wyatt this week.  i have seen several people give me that pitiful, "so sorry for you" look.   seen (and heard) the whispering amongst families and friends while looking in our direction.  i know that wyatt is awfully cute, but i don't think that's what they are whispering about!

i posted a status on facebook about the whispering, and my good friend kym (http://www.stringbean17.com/)  sent me this message:

"Depends on the whisper....I do lean down sometimes and explain to my kids LOTS of things. Why someone is being mean....what the preacher meant, what the person in a wheelchair is doing with a pen in his mouth...usually then it involves them interacting in some way. Being kind to the meanie, interesting dialog now that they understand what the preacher is saying....or a conversation with someone in a wheelchair.



I do not know if the whispering you encountered was mean-spirited, but it may not have been. If it was, a good smile or having Wyatt blow them a kiss is a good option! :) If it isn't, a good smile or having Wyatt blow them a kiss might just be what they need to come explain that they were telling their child about their best friends little brother when they were a child...and how much they loved him, but they were not sure if they could come up to you.


I think that people who do not have kids with special needs do not know that they can talk or approach others. I have always walked up to the wheel chair, engaged the worker at wal-mart, but
most people are afraid of being rejected! :)"
 
i know that it's hard to know what to say to someone who has a child with special needs, but i wish it wasn't that way.  i wish that more parents could just treat our kids like we treat theirs....as precious gifts from God.....created by the same loving God!     not like our kids have something that their kids might catch.... something extra sweet, loving, kind and innocent.......
 

Friday, December 10, 2010

I Meet the Best People at JC Penney!

i meet the greatest people at jcpenney!   that's where i met my good friend april, whose son is clayton!  our mutual occupational therapist had given me april's number, but we had not been able to connect yet.   we ran into each other there, and i immediately recognized clayton....i knew she had to be april!   clayton is 4 months younger than wyatt, and we have become fast friends....with that little something extra in common!

this week, while doing some Christmas shopping at jcpenney, i saw a young adult with Down syndrome shopping with his parents.  i immediately spoke to his mom....just "hi, how are you?"....trying to figure out what to say!   as i circled around the area where we were shopping, i was able to speak to his mom again...."i have a baby with Down syndrome" i said..... she immediately warmed up to me and we had a lovely conversation.  she told me he (wyatt) would be the biggest blessing of my life!   their son's name is nathaniel, and he is a sweet, courteous, precious 30 year old who loves to worship!   his mom told me that he even sings solos in church!   my encounter was such a blessing to me....such an encouragement!   i actually saw them again today after the old fashioned Christmas parade that wyatt and i rode in with my parents, in my dad's '31 model a!    i grabbed wyatt and "chased them down" to talk to them again!    they are an awesome Christian family.....i'm so glad i met them!

his mom told me that she was 21 when he was born.   he was born right here in the same hospital where wyatt was born.  at that same hospital they told his parents to put him in an institution. i praise God that no one said that to us when wyatt was born.  i can't even imagine.....

it's hard to imagine that parents in eastern europe and other countries leave their babies born with Ds in the hospital to be transferred to orphanages.  it's hard to believe that people in russia believe that adults with Ds "cannot take care of themselves or contribute to society. So..it is all we can do. Maybe the conditions should be better, but many of them are violent and mentally unstable. So we have no other choice.  Sorry."   this comment was posted on my friend patti's blog (A Perfect Lily.....letters to my daughter) today by a young russian woman......  this comment leads me to ask, have they ever met a child or adult with Ds?   the most kind, sweet, precious and loving people in the world?   oh my goodness..... so sad that even today in russia people believe this.....

we must pray for these people, for people around the world to have their eyes opened to the truth about Down syndrome....  we must pray that doctors will stop counseling parents who have a prenatal diagnosis of Ds to have abortions.......   the needs are so great.....  thank you God, for wyatt....for opening my eyes to the beauty that you created with that little extra chromosome.....maybe we're the ones who are missing something......

Thursday, December 9, 2010

Olga's Giveaway

i am so proud and excited for my friend patti who is having a giveaway for the adoption fund for OLGA from Reece's Rainbow !   patti's heart has been burdened for this precious girl who will turn 5 in january....the same month patti's own daughter lily will turn 1!   

OLGA
please visit patti's blog A Perfect Lily....Letters to My Daughter to read about how you can donate to olga's fund as well!   patti is a pastor's wife, mother to 10 children, and homeschooler!   her 10th child, lily, was born with Down syndrome this year.  patti does not intend to adopt olga, but she knows that if there is enough money in olga's fund, someone will adopt her!  money is often the only deterent for families who would love to be the forever family to one of these precious children! 

i'm so excited that in only 3 days, patti has raised over $4,300 for precious olga!   i praise God that so many people have given sacrificially for this precious little girl who so desperately needs a home!   what can you do?

Wednesday, December 8, 2010

Wordless Wednesday: Thanksgiving in the Country

          just thought i'd share my handsome guys with y'all!  
          i'd hoped one of these would make a good Christmas pic,
          but not so sure about that!  we are so blessed!  

this is my crew! 
dad (tim) holding wyatt, forrest in front, and ethan beside me!

i'm not sure where forrest is looking in all these pics!

next year i don't think forrest will be able to stand in front of me!  

Saturday, December 4, 2010

A Baby for Christmas!

one of my best friends in real life is actually giving a baby a home this Christmas.  i am so excited that my friends kym and dave are getting the desire of their hearts, the opportunity to adopt!  they have been blessed with 7 wonderful children.....seriously terrific kids, but as long as i have known them, they have ALL wanted to adopt a child.  at one point it was a child from china, but i think their family size prohibits that from happening.  they are a loving Christian family who have felt strongly about adoption for a long time!   

they have been in the process of getting their home study complete; we were blessed to serve as references for them, having to answer some pretty tough questions!   they received word monday that their home study was complete, and received word either monday or tuesday that a couple had chosen them to adopt their baby.   the baby boy is due around december 26th, and they video chatted with the birth parents this week!  at that time, the birth mom told them they would like for them (kym and dave) to be there when the baby is born, and could schedule an induction to be sure that happens!   very exciting!   

and to add a sweet blessing, the birth parents shared that they had chosen a name for their baby already.....WYATT..."strong of heart!"    kym and dave were more than happy to keep that name as one of their precious baby's names.   our kids share a lot of names in common already!   kym also told me that it is very fitting, because perhaps without God blessing us with our "surprise" little man wyatt, they would never have pursued adopting a child at this point in their lives!   

i am so thrilled at how God is at work in their lives....at His perfect timing!   i am eternally grateful that He is in control.....and i am not!    peace.....

Thursday, December 2, 2010

Who Will Love The Orphans This Christmas?

i love Christmas....it's my favorite time of year!  not only do we celebrate Christ's birth, but i have a birthday near Christmas as well!   and i'm like a little kid....i love birthdays!   i like to have a party, i like to get presents, i just like to celebrate my birthday in general!  

this year, however, i'm really struggling.....my heart is so torn for the babies and childrens with Down syndrome who need homes, both here in abroad.   i'm crying as i write this.  their needs are so great!   and their Christmas is so bleek.  who will love them?  who will hug them and hold them?  i need NOTHING in comparison to those precious children.  my kids need NOTHING in comparison to those precious children.    yet we live in such a "gimme gimme gimme" society......UGH!!!!    the commercialism of Christmas takes our focus off of the real reason we celebrate Christmas....the birth of our Savior, Jesus Christ!  

yes, i'm giving to help bring a precious child home.....but should i do more?   my heart just breaks over these babies!  i just saw one on reece's rainbow....dante....who was born the same day as our precious wyatt.....and i saw christian, who was born the day before wyatt.....these boys so desperately need mommies and daddies to love them! 

i don't know what God's will for me is in this area, but i do know that He has changed my heart drastically over this past year.....yet it needs to be changed more and more to be like His.  i also know that i need to be on my knees in prayer seeking His direction......

Wednesday, December 1, 2010

Wordless Wednesday.....Wyatt's Glasses!

if you're happy and you know it!
just hanging out with my daddy!

give me the camera!!!
physical therapy....with ms. joanna...
practicing standing.....have you ever seen such a contraption????

Tuesday, November 30, 2010

Wyatt's Adventures Continue....He Got His Glasses!

and so the fun begins!  we got wyatt's glasses today, and it seems that wyatt likes his new glasses just about as much as he liked his bone conductive hearing aid!   i am so very thankful that i do not have to wrestle both of them on him at the same time!  (since it's been determined that he does not need the hearing aid....PRAISE GOD!!!)   not sure how long it will take him to get used to the glasses!  they are very cute, though!   the lady who fitted them on him said it might take about a month.....we can only hope!

i want to think that if they help him, he will want to keep the on.  of course, with his beautiful long eyelashes hitting the lenses from time to time, i'm not sure that he will ever get used to them, or forget that he has them on!  UGH!   at least they have a strap around the back that will keep them on him, somewhat....until he pulls them over his head, of course!   hmmmm..... why don't they just put kiddos in contacts?   i've had friends whose kids used them......but with his astigmatism, i'm not sure that would work.....plus the whole idea of trying to put contacts into his little bitty eyes....

and so the adventure continues.....he is one good natured fellow!    we are blessed!    and yes, i'll post pictures just as soon as i can get him to keep them on long enough to take a picture!!!! 

Thursday, November 25, 2010

So Much To Be Thankful For....

happy thanksgiving!  where has this year gone?  it's hard to believe that Christmas is just around the corner!   and then 2011!!!   we have so very much to be thankful for!  where to even start.....

i'm thankful for:
>God, and the gift of His Son Jesus
>our family
>friends, both in real life and online
>good health
>awesome medical professionals who have taken such great care of wyatt this year
>2 successful surgeries for wyatt
>our home and cars
>plenty to eat and clothes to wear
>families who are willing to adopt babies and children who need homes
>love
>laughter
>the Bible
>freedom to worship
>great teachers and schools for our boys
>an awesome church family

there is so much more.....the list goes on and on....mainly i am thankful today that God is in control and i'm not, and that He is gracious and merciful to me.....i certainly don't deserve it!     peace.....

Monday, November 22, 2010

Bye-Bye Adenoids!

tomorrow is surgery day.  i have been a little nervous today, without really realizing it, resulting in being a tad bit grumpy.  my oldest son had to remind me to "calm down" this afternoon as i rushed around the house trying to get the tile cleaned (in case anyone comes over to check on wyatt after his surgery!)...crazy, huh? 

wyatt will have his adenoids removed in the morning around 9:45 (cst).  it will be an outpatient procedure, barring excessive bleeding, etc.  we should be home by mid afternoon, i would think.  everyone assures me that this is such an easy surgery, quick recovery, etc.  i believed all that last week.  now i'm stressed.   

i know it's nothing like the open heart surgery, but it still involves anesthesia....UGH!   i'm sure he will be fine, and the dr told me they will not be administering antibiotics during surgery....a major concern because he had an anaphylactic reaction to ancef during his open heart surgery....which makes surgery a little more scary for us. 

i'm glad that this time tomorrow night the surgery will be over!  i'm thankful that we have lots of wonderful friends and family praying for him.  he's such a tough little guy anyway!   thanks for caring about our family, and for loving our wyatt!  we covet your prayers for us!  

Saturday, November 20, 2010

The Less Than "Perfect" Twin....

my heart is broken.  last night our fb family's world was rocked when we heard that a set of twins were born in arkansas who had adoptive parents waiting to take them home. one twin did, in fact, go home. the other twin was born with Down syndrome and was left in tenuous health at the hospital with a do-not-resuscitate order. cries went out for a family willing to drop everything and be this boy's advocate and hopefully adoptive parents.  parents who were home study ready, preferably close by.   as of the last posting that i saw today, there is one homestudy ready family in arkansas who is contacting robin steele, who is with the dsagc national ds adoption program, to inquire about the situation!!   many of us are praying that this will be the baby's family.....

as posts were flying all over facebook night, there was of course heartbreak, sadness, anger, exasperation, frustration....so many emotions over this upsetting situation.   it was hard to even write about it, with tears threatening.  how could a family refuse a baby who they had committed to adopt?  i can't even begin to conceive such action.  and how could they be allowed to take the "perfect" child?  none of us are ever promised perfection.   as tim has told me many times, there are no guarantees in life.  it is beyond my comprehension..... yet 92% of parents who receive a prenatal diagnosis of Ds choose to abort their precious babies.   so why should i be so shocked that a family would choose not to take a child with Ds? 

because i know of so many families right now who are in the process of adopting children with Ds,  internationally as well as in the united states.  families who are making tremendous sacrifices to be forever families to these precious children.   families who are choosing life for these babies, instead of new cars, new and bigger homes, vacations, the list goes on as to the sacrifices these families are choosing to make.  CHOOSING TO MAKE!!!!    to save a life......

God has been at work in my heart about these precious babies with Ds who need homes.   am i called to adopt?   not that i know of right now.   am i called to pray for forever homes for these babies?  yes!   am i called to support these adoptive families?  yes!   and i can tell others!    a fb friend sent me a message last night entitled "look what you started!" because of my post about this little twin.....she had been online researching adoption, knowing that she couldn't save this little one, but seeking information....the possibility of adopting at some time in the future.  i assured her that i will be praying for her as she pursues God's will in this area of her life! 

what are you called to do?  are you called to adopt?  to support others who are adopting?  to pray?   we must each DO what we are called to do........

Thursday, November 18, 2010

A Letter From Melanie's Daddy

i've added melanie's button and am reposting my friend's hubby's letter concerning their journey to adopt melanie!

It is getting to be that time of year again, it is getting cold here in the Midwest and our minds all start gravitating towards the holidays that are upon us. Another thing that a number of us start thinking about this time of year is how we can reach out to serve other people that are in difficult situations.


With that in mind, I would like to share with a story about how my wife Dena and I’s life has been changed recently and how we would like to enlist your help as the end of the year gets closer.

As most of you know, Dena and I were blessed 4 years ago to bring into this world a little girl that has some special challenges in life. Ragen Lynn Sader was born to us with Down Syndrome and Autism, a dual diagnosis that makes life a bit of a challenge sometimes for us all. But a dual diagnosis that is nothing but a pure blessing in our lives. Over the last 4 years, we have learned, gotten frustrated, grown and ultimately realized that maybe we were given this special challenge in life because we are being prepared for making a bigger impact on the world. It is at this point in time that Dena stumbled upon a website called Reece’s Rainbow and our lives would never be the same again.

The sad but cruel reality is that most children with special needs that are born in less developed countries in the world are immediately put into orphanages to live out their first four years of life and then as soon as they turn four years old, they are transferred to mental institutions, where 85% of them will die over the next two years of life due to malnourishment or lack of resources to help with basic surgeries to repair common physical impairments that they are born with.

After being confronted with this reality and really praying about how we could help, Dena and I have decided that we have been uniquely equipped to try to help just one child out of that cold, cruel and dark reality. We have been blessed with a warm home, a pantry that has food, family that has lots of love to give and experience with the challenges that will confront a child with Down Syndrome as they grow. Because of these blessings, we have made a decision to move forward and start the adoption process for bringing home a little girl that is now two years old from Eastern Europe. Her name is Melanie and her picture is below.

So, now is the part where I ask you to get involved to help us bring her home. There are three ways that we would ask that you consider helping us on this journey:

1. Donate Money- We need to raise around $20,000 for the costs of the adoption over the course of the next 4 months and any little bit helps. Even a donation of $10 will help to bring her home. The donations are all tax deductible and very simple to do online at this website

2. Pass on This Story- Dena and I have had our fair share of ups and downs with finances and completely understand if even $5 is out of the question. If that is the case for you, please just pass along this story to all your friends on Facebook, Twitter, Linkedin, MySpace and anywhere else that you connect with people. You never know who the story will touch and inspire to use their resources to help.

3. Pray- I know that some believe in God and some don’t. If you do, I would just ask that you pray for us that we might have the strength, wisdom and courage to keep pushing through, even when the process gets hard. We believe that this is truly the work that God would want us to be doing and just would ask for your prayers to that end.

Thank you for taking the five minutes it took to read this and think about helping us to make even a small difference in the life of a little girl half way across the world.

If you have any questions please just reach out to me or to Dena.

Thank you so very much,

ROB

http://reecesrainbow.org/sponsorsader






Monday, November 15, 2010

"Will You Help?" by Cathy Harms Thompson

special thanks to my friend Cathy Harms Thompson for "guest blogging" ....  she has a powerful message to share!  


I've been wondering how to write this post for weeks. You see, I really want to appeal to all of you...make you think...make you ACT. I had no idea how to start it.

Until this morning...

Lily and I have our morning routine. Every single day, I kiss Lily, plop the peanut in her crib with a bunch of her toys, turn on some music, and then hop in the shower. As soon as the water is off, I listen to hear her still playing in the crib.

This morning was no different. After my shower, I heard her banging her toys around and I could also hear that she had restarted her little music box. OK...safe for me to blow dry my hair now. As I shut off the blow dryer, I didn't hear anything coming from her room so I walk down the hall to check on her.

Lily is sitting in the corner of her crib...no toys...no music. My first thought is, "Ahhhh...poor baby...no toys (they were all on the floor)...no music. You are all alone in that crib with absolutely nothing to do." I scooped her up...and gave her a kiss...

And then...I started crying...

It hit me...

Well...maybe God hit me...

I was so worried about my little peanut who was alone in a crib for 5 minutes when across this world there are so many orphans who face this...


EVERY. SINGLE. MOMENT. OF .THEIR. LIVES.

I am asking for your help in bringing one of these orphans home. Mark, Lily, and I were fortunate to meet the Sader family this past summer at a local zoo. Their gorgeous daughter, Ragen, is blessed with a little something extra, just like Lily.




God has been working hard on Deanna and Rob. They have committed to adopt Melanie. Melanie is an orphan...abandoned just because she has Down syndrome. She's an adorable little girl...I personally think she even looks a bit like her big sister Ragen.

Deanna, Melanie's mommy, posted this today on Facebook...

This is Melanie...she is an orphan in Eastern Europe who is seen as imperfect all because of one extra chromosome. My husband and I are trying to adopt this little one with all our might and God's help. She needs medical care for her heart and intestines...she will not get this where she is and could die. If she stays in her orphanage, she will go into a mental institution at the age of 4...85% of these precious children die within the first year of institutionalization. Please help us save her from this fate.


International adoption is very expensive. You can help bring Melanie home!!!! You can donate to her adoption fund through Reece's Rainbow. Just click here to do so. If you are not comfortable making an on-line donation, you can mail a check to the following address:

Reece’s Rainbow
PO Box 4024
Gaithersburg, MD 20885

Be sure to put Melanie/Sader adoption on the memo line. You will get a receipt for your taxes for your donation.

Your donation might help Melanie to spend one less minute alone. Every child deserves to know the love of a mommy and a daddy. Melanie HAS a mommy, daddy, and a big sister. It breaks my heart to know that money is what is keeping them apart.

Donate today...and pray...pray not just for Melanie, but for all orphans.


God bless you, sweet Melanie...

We can't wait to meet you!!

>visit Cathy @ 

Thursday, November 11, 2010

Wyatt's Big Old Adenoids Have Got To Go!

took wyatt to the ENT for his follow-up appointment from his infection two weeks ago.  the dr. had ordered an x-ray of his adenoids, mainly because of my concerns about wyatt's "gagging" when he seems congested.  we did the x-ray this week, and the results are very enlarged adenoids.  "obstructive" was one of the words used in the report.  so it looks like we'll be facing surgery to remove his adenoids soon.  the dr. says that it is a fairly "easy" surgery....outpatient in the hospital, most likely able to go home the same day. 

although i really felt like this was coming, it's still hard!  and i'm still second-guessing the decision to proceed with surgery!   it's almost like i'm in a fog....kind of weird.   he did so terrific through his open heart surgery, i have no reason not to expect awesome results again.  just hate surgery for our little man.....

and then i get on facebook and see my online friends whose kids also have Down syndrome, who are having such bigger issues than we are facing right now.  my friend renee's daughter lucy has had a tough time with her open heart surgery recovery.  praise God for a better day today!  tracie and john's baby, mattie, a newborn that they are adopting, has had a rough start since birth.....praising God that he is getting better and stronger daily as well!    and now christie's son joseph has just been transferred to a children's hospital with an uncertain diagnosis; osteocrenosis.....perhaps Legg Calves Perthes Disease.   such a scary time for them....i can't even imagine......please join me in praying for them....   

i'm so thankful that our God is Jehovah Rapha....our Great Physician....our Healer.  i'm thankful that He hears and answers our prayers......and sees and collects our tears.....

Monday, November 8, 2010

No Hearing Aid for Wyatt!!!

i have a HUGE PRAISE!  wyatt does not need to wear the hearing aid!   PRAISE GOD!   our pediatrician had recommended a second opinion since we had never been able to get a good tympanogram reading in wyatt's left ear, especially since he is about to get glasses.  there are two audiologists in the group that we have been using; one had recommended the bone conductive hearing aid, the other (who we go to church with) thought that wyatt did not need it.  he was right!!!

so after being encouraged to seek another opinion by not just our pediatriacian, but wyatt's speech and developmental therapists, we went today with the goal of trying to get a better reading.  kiddos with Down syndrome have such tiny ear canals that it is difficult to get good readings.   we are so thrilled that she was able to get a good tympanogram in both ears.  not such good results with the OAE, due in large part to the shape and size of his ear canals, but great results in the booth!  she recorded 15 db in his left ear  and 20 in his right (which is normally better than that!).   she said that her report would be that wyatt has "normal" hearing....not just for a child with Ds, but overall!   yay yay yay!  

i am so thankful that i followed my mother's instinct (God's leading...) and proceeded with more testing.  it was just such a hard decision!  it would just be so much easier if God would just write instructions on a tablet for us to read daily, wouldn't it?   i felt like i have been "beating a dead horse!"  i'm so glad my friend susan could go with me to "back me up with another set of ears" when tim was not available!  i always leave appointments wondering if i am remembering everything they told me when i don't have tim with me!  

so very thankful for this awesome news!!!   peace......

Sunday, November 7, 2010

Today Is Orphan Sunday....

this morning in worship, our choir sang "orphans of God"....at first i just "leaked" a tear of two....then the "waterworks" were turned on....it was awful!  thankfully i had tissues in my purse.....of course it would be the day i wear mascara, which is not very often.....

today is "orphan sunday," and as my friend jennie posted earlier, there are more than 140 MILLION orphans in the world today.  oh my goodness....how can this be?   as i sat there crying, and looking at our precious wyatt, thinking about how much he is loved by so many people, i was burdened again about all the babies with Down syndrome in this world who are orphans.  my heart just breaks for them.  of course i know that there are so many orphans who have no "special needs"....but i was reminded of those babies and children with Down syndrome who are virtually alone in this world, without the love of a family.  

i am so thankful for those families who have been and are in the process of adopting.  what a blessing they are to these little ones.  i will continue to pray for them, share about them with others, and support them as i can.  may God bless them as they commit to being "forever families" for these precious orphans....

Friday, November 5, 2010

Today was Lunch Bunch Day!

our lunch bunch group of mommies of kiddos with Down syndrome met today at my house!  our group expanded this week to 6 moms, and we had a great time.  we had 2 more mommies who were able to join us for the first time today, and 1 who couldn't be here because of a sick kiddo.  we had 3 little boys, ages 1-2, who were cute as can be!  they played lots of ball!   all kinds of ball, too!  

the funny thing about our group is that we talk all over each other....there are usually 2-3 different conversations going on at any given time.  we just may have to make rules!   like "raise your hand to speak"....."1 person talking at a time!"....you get the picture!   hahaha!  perhaps we just need to meet more often so that we can talk more!  it seems like we all have something to say that just can't wait!  it's pretty funny.  it would drive a man CRAZY!!! 

i love this group of ladies.  it seems like one of us always has an answer to another's questions!  we are so blessed to have each other and to learn from each other's experiences.    and i know our kiddos benefit as well, as we help each other along this unexpected journey!    peace....

Thursday, November 4, 2010

I Don't Like Drama....Even Online!

well, i now know that there can be real drama online, not just in person.  maybe now i will learn to "keep my mouth shut" online!   interestingly, in our Bible study this week, beth moore had talked about being "punk'd" in her ministry.  someone had posed to be one thing to her and they then revealed that it had been a lie.  not sure the details, but we've been working on that in Bible study this week, and how we must be careful not to be deceived.  we must use the discernment of the Holy Spirit to guide us in every area of our lives.  we have been given this great gift of His presence, and it is up to us to allow Him full access! 

her warnings to be careful, especially in regards to the internet, and how someone can pretend to be anyone they want to be online, made me especially cautious when questions arose about a particular online fb friend who was asking for money to help her family, and their young son with Down syndrome.  in this huge online Ds family that i'm a part of, we have a very diverse group from all over the world, united by that extra twenty-first chromosome!  i know very few of them first-hand, however.   apparently several people were very concerned when this mother started asking for money.  naturally, since we don't really know each other, many folks were immediately suspicious.   i was involved in one conversation about this.....and although i don't believe i said anything "wrong," i just wish that i had not even joined in the conversation!  there was no reason to!    this woman's feelings were hurt by many people who questioned the validity of her requests and identity.  i have apologized to her and feel really bad for her....life is so different in other countries....i realize i have no idea how "good" we have it in the united states in regards to services for our kiddos w/Ds! 

so what have i learned about this?   i don't have to be involved in a conversation that i really have nothing to do with!  i certainly don't want to "judge" someone i don't know...actually who am i to"judge" anyone?  i can pray for that person....that their needs will be met, physically, financially, mentally and spiritually.  i want to present the love of God to everyone i have contact with, that they will be drawn to Him through my life.   i never want to do anything that will push someone away from Him, and the great gift of salvation available through His son Jesus Christ.   peace....

"So this is my prayer: that your love will flourish and that you will not only love much but well. Learn to love appropriately. You need to use your head and test your feelings so that your love is sincere and intelligent, not sentimental gush. Live a lover's life, circumspect and exemplary, a life Jesus will be proud of: bountiful in fruits from the soul, making Jesus Christ attractive to all, getting everyone involved in the glory and praise of God. "    (Philippians 1:9-11   The Message)





Wednesday, November 3, 2010

He's As Strong as An Ox.....

wyatt is as strong as an ox!   i'm not sure if that's another trait of Down syndrome or not, but i don't remember our other sons being so strong.   it's a wrestling match just to change a diaper lately.  and now that we have regular poops (thanks to miralax!),  it's a nasty wrestling match!    if wyatt doesn't want to do something, it's pretty hard to get him to do it!   and that applies to wearing his hearing aid as well....once he takes it off, it's hard to get it out of his grip!   it's also hard to get a spoon away from him when he grabs it ... especially when it has food on it!  ugh!  he's a strong little guy!  

every time tim and i talk about how strong wyatt is, we're reminded of one of the first children's books we bought for ethan. we loved and read repeatedly "quick as a cricket" by audrey wood.....an awesome book about many different traits of a boy compared to various animals.  it has beautiful illustrations....one of them depicting "strong as an ox!"  it brings back great memories of when ethan was a little guy.....a long time ago!  he's now 6'2" and 17 years old....a senior in high school!   where has the time gone?

Tuesday, November 2, 2010

His Glasses Will Be Blue......

i asked tim to go with me to help pick out wyatt's glasses.  smart thinking, huh?   wyatt flailed, threw his head back, slung his head from side to side, anything he could do to avoid getting those glasses on his face!   it was so dramatic that it was comical....except it wasn't!    not sure how on earth we are going to convince him to keep them on his face!   with the hearing aid as well.....

wyatt's speech therapist happened to come into the optical shop at the same time, and gave us another set of eyes to try to figure out which pair would work best for wyatt, in conjunction with the hearing aid.   she is so optimistic and positive, she just kept telling me that we'll (together) "figure it out!"   i appreciate her! 

so we're going with the miraflex (plastic) glasses this time.  i know that everyone swears by the specs 4 us, made especially for folks with Down syndrome, but i don't think a metal frame is the best thing for wyatt right now.  seriously.  we've talked about it and made the decision.  done.   and we're going with a blue frame, since tim would not let me order red....i really wasn't going to order red, but he knows it's my favorite color, so he just assumed that would be my vote!   hahaha!  he doesn't know me as well as he thinks he does....but if orange had been an option.........

as we're leaving, tim said "you don't think you could have done that by yourself, huh?"   not on your life!  

Monday, November 1, 2010

Glasses Too?????

so today was wyatt's yearly opthamologist check-up.  he needs glasses.  i feel so confident that she knows what she is talking about....i don't need a second opinion.  i'm just so sad.  i cried when i talked to tim.   i told my friend carol (who has a son w/Ds).......isn't it enough that he has Ds, had open heart surgery, is wearing a hearing aid.....do we have to add glasses?   i know i've said this before, but it just makes me so sad that he has to have one more thing that makes him appear different from everyone else!   UGH!!!   her son also has glasses...

so now i research glasses, which ones are best for him....everyone has an opinion, and i think they're all different!   i read that approximately 87 % of kids with Ds will need glasses by the time they are 3!   i didn't realize the numbers were that high.   his appointment was pretty tough, once they got his eyes dilated, it took 2 of us holding him while the opthamologist looked in his eyes.  she is very thorough.....she said "i hate to tell you, but he's going to need glasses.....not sure how he's going to keep them on!"   hopefully better than the hearing aid.....as much as he likes to snatch everyone else's glasses, i'm not sure what we are going to do with him!   and now everyone in our family will have glasses!   more alike........

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 books....it's so funny when he takes a book away from us and
turns around with it,  like "just for me!"....to "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 himself....it'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 loss....it 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 day....one 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 ways.....no 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 friends.....to 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!

wow!

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 side....in 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:  http://cornishadoptionjourney.blogspot.com/ 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 family.....at 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 met...now 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 boys....it 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.....