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........