31 for 21, Day 31: God's still got our backs

The last day of 31 for 21!! I MADE IT!!  Patting myself on the back for posting every single day this month whether it was on this blog or our family blog.  I was worried I wouldn't have enough to post about, nor the time to do it, but I did it!! YAY!!  I hope during this time of Down Syndrome Awareness Month that you may have learned a thing or two- I would love to hear from you!  Was there something in particular you took away from reading?

So, back to the title of this post- God's still got our backs.  Had another one of those moments last night where after a moment of complete panic regarding one of our documents, I realized that God was totally looking out for us and made sure we were put on the right path.

I belong to a couple private online forums related to Reece's Rainbow adoptions- groups of families involved in the adoption process, and one group in particular adopting from the same country.  It was a question raised on the latter forum that caused extreme panic- we completed something incorrectly on one of our most important applications: our I-600A- application to the United States Customs and Immigration Services for permission to bring a child into the country.  Yea, just a tad important!!

Someone on the forum posed a question while completing the application, and I know God brought her to ask this question so I would see it with the responses and learn I entered the wrong information.  I would see this error before it was completely processed giving us time to get it corrected before it threw a wrench into our plans.  I started to panic right away when I saw my error, digging out the copy of the application I saved in my files.  I thought the question was asking for the location where we would be going for our fingerprints, but in fact I needed to enter the US Embassy in P's country where the approval needs to be sent!!  BIG difference!!  I immediately e-mailed our adoption agency last night.

Have I expressed how awesome our agency is??  HIGHLY HIGHLY recommend them!! I will give more info after our adoption process is complete.  Our adoption coordinator e-mailed me RIGHT back reassuring me that this error was not catastrophic.  I need to make a phone call in the morning to the government office and see what I need to do to get the approval on the right track after it is processed.  WHEW.

I call this morning- the staff I have spoken with on a couple different occasions have been wonderful also.  I was told that our file hasn't been assigned to an officer yet, but she would make a note for the change.  It would simply involve them crossing out the one location and entering the correct one.  WHEWWWW. *deep inhale..... deep exhale....*  I also mentioned that we would be out of country for the appointment date given to us for our fingerprinting and that we wish to walk into the office early to have that done.  She requested I call back the day after we have the fingerprinting completed to let them note on our file that it is complete- the officer assigned to us would normally wait until the appointment time to check and see if it has been completed.  This way they will know it is finished and our application can be processed quicker. :)  So glad I called!

Mike and I are going tomorrow for our fingerprinting- we've been assured that all should be fine and they should let us walk in with our letters and let us get printed even though it's not the date/time printed on our letter.  Keep us in your thoughts tomorrow that all goes smoothly with that!

31 for 21, Day 30: Snow?!?

Posts for Days 28 and 29 can be found at our family blog HERE. Lots of cute pics of Evan from his first Halloween party, and picture overload for his birthday yesterday.  Still can't believe my baby boy is 2 yrs old!!

I think God is preparing us for our trip to meet *P* soon..... taken yesterday:

Yes, it is still October.  Yes, we live in Maryland where we usually don't get snow until December or January.  Wonder what the weather is like in Eastern Europe this time of year?

31 for 21, Day 27: Any CPA's in the house?

Checking to see if any of P's faithful readers happen to be a CPA- we need assistance with a document to be submitted to her country for court.  It is a very simple document but needs the signature of a CPA.  Please let me know if there is anyone out there- we need this done ASAP!  Please e-mail me at kaylinsmommy@gmail.com  Thanks so much!! :))

I just had a brief phone conference with the adoption agency going over all the documents we need to complete our dossier and to bring to court for our second trip.  The next paper race has begun!!  Not quite as overwhelming as I thought it would be- we can do this!! :)  We will have another phone conference with them next week to go over all our travel plans/arrangements/itinerary etc. Exciting times!!!!!

31 for 21, Day 26: Reservations :)

***Please make note*** We have a new web address!!  Please revise your bookmark if you had the old blog saved, and make sure you click to follow us at this new address!!  Due to some concerns regarding *P*'s name and photos getting around, we had to take them all down, and I had to change the web address for this blog since it too included her name.  Lots of work getting everything moved over and set up.  My babygirl is worth it though!  We can't afford to have any glitches and will do whatever is necessary.

Whew this 31 for 21 is getting more and more difficult, especially now that we have travel plans!!  Everything is so rushed... I booked airfare today as well as our first hotel night in P's country.  Our adoption agency will make our travel arrangements into P's region and they will make our hotel reservations there as well- we will pay them those expenses upon arrival.

Our itinerary will look something like this:  we will fly into P's country- departing in the evening here and arriving the next day there... stay one night in the big city, then take an overnight train into P's region... stay three days there going to appointments and meeting P and the orphanage director, then take the train back to the big city, and fly home.

We are also on another paper chase- collecting documents for court and the rest of our dossier which will need to be submitted as soon as we return from our first trip. Busy busy!!  Things are really moving and we are getting very excited and nervous all at the same time.  Some specific prayer requests:

* please pray that all goes smoothly, that we have a safe and successful trip
* that P is in good health and spirits, and that P accepts us as her family
* for our strength as it will be so difficult to leave her after just three days
* that P will understand that we will be back <3
* for our family and children at home- that all will be well here and Evan especially will adjust ok to Mommy and Daddy being gone

Thanks so much!! <3

31 for 21, Day 25: Good news and bad news

I will start with the good news:

WE HAVE TRAVEL DATES!!!  We will be meeting our baby girl very soon!!!! :)) I'm not going to publicly post when we will be going because I am not comfortable announcing to the world when I will be away.  But, to those with ill intentions- just know that our house will NOT be empty while we are away anyway! :-P LOL The kids will stay here with family while Mike and I travel.  So excited and nervous all at the same time!!! Lots to do!!!!

The bad news:

We were cautioned by our adoption agency that apparently *P*'s name and photos have been "Everywhere".  We were told to take down all her photos as well as her name since it is similar to her birth name which is confidential.  I was always curious about why Reece's Rainbow didn't give more different names since they are often close to a child's birth name.  Sooooo... her photo and name will be coming down from Reece's Rainbow as well.  I painstakingly went through this entire blog removing every mention of her name (it took me over an hour and a half) as well as her pictures.... and I even had to delete all the precious comments people left which included her name also.  This was SO extremely difficult for me.  So many beautiful words and well wishes I hated to throw away, but it had to be done.  We don't want to jeopardize any part of our adoption.  A few posts I hid entirely but will put them back up after our adoption is final.  I also took down our donation box until we get a new one without her name listed.

Since the web address for this blog includes her name also- I am going to be changing it.  Please know that it is not disappearing!!  Please bookmark the new web address:

http://gracefulbutterflywings.blogspot.com/

  I will be e-mailing Reece's Rainbow since we need her photo and name removed from their site also, and I will provide an updated web address for our blog on that page as well.  Sorry for all the confusion! :(

I also request that if you blogged about *P* in the past- please be so kind as to remove her name and photos from your posts.  I am so moved that others took the time to blog about her. <3 Also, while leaving comments, please don't type her name, just use "P", otherwise I will not be able to publish them.  We need to protect her best interests.  Thank you so much for understanding!!

Under Construction!!

Welcome to *P*'s new blog!!  I will convert everything over in a few days after people get the news of the new web address.  Thank you for being patient and bearing with us!!

31 for 21, Day 23: Happy Birthday to me!

Yep, today's my birthday.  Oh, you forgot to send a card?  That's ok.  I have been awful at remembering to send cards also, especially since having kids.... Just ask my bff Heidi- that girl NEVER forgets an occasion, and I always feel the most guilty when I realize I didn't get a card in the mail for her birthday.  Or anniversary.  And what is up with the prices these days?  Some of these cards can cost upwards of $5.00!!  For a piece of paper with words and a picture printed on it.  I'll tell ya what... if you want to give me a birthday present or card, just donate that $5 to P's grant. ;)  You're giving me the gift of a daughter, and it doesn't get much better than that!  Evan's birthday is in 6 short days (I still can't believe my baby boy is turning TWO!!) so you could even do a two for one! ;)  Evan gave me the most WONDERFUL present this morning- he slept until 7:30! So sweet! :)

Gosh I can't wait to get my hands on our little girl!!  And with the exciting news on my last post HERE- it should be happening sometime in November!!  Hallelujah!!!  That will be the best belated birthday present EVER.  We also received our biometrics fingerprint appointments in the mail yesterday!!  For those unfamiliar with the adoption process, we had to submit applications to the US Customs and Immigration Services- part of the Department of Homeland Security, to gain permission to bring an internationally adopted child into the country.  Along with paying a hefty fee, we have to get fingerprints taken for yet another background search, and then receive our approval.

Wanna go one step further for my birthday?  It won't cost you a penny, I promise.  Go sign up at Reece's Rainbow to be a Christmas Warrior for one of the many waiting children.  Last I saw posted from Andrea- there were still 32 boys and 11 girls waiting for a warrior to be their voice.

As an extension of our Prayer Warrior project, and an enhancement to our annual Christmas Angel Tree Project, we are seeking passionate folks to be one child's Christmas Warrior this year.  

Our Christmas Angel Tree Project is our biggest and most important fundraiser of the year. All of our orphans with Down syndrome from ages 0-5 are posted on one page for people to sponsor and donate for their adoption grants. It runs from November 1- December 31, 2011. Those who give more than $35 recieve a beautiful photo ornament of their sponsored child to hang on their Christmas tree. These ornaments make fabulous gifts for your friends, family, and fellow Down syndrome advocates, while providing a life-saving gift for the child who is in desperate need of a "forever family" of their own.

When you sign up to be a Christmas Warrior   (laurie@reecesrainbow.org) for your child, you are working towards the goal of raising $1000 or more for YOUR CHILD. There are lots of ways you can do this, and the power of the internet makes saving a life even easier than you might think. Even if you don't have a cent of your own to donate, your willingness to reach out to other people is all that matters!


No, you are not in any way obligated to raise $1,000 for your angel tree child.  It's simply a goal that would be wonderful to meet.  Any efforts are appreciated!!  You can share on Facebook, Twitter, blogs, perhaps approach your local fire or police department about doing a fundraiser... find someone who is a consultant for home parties and do a fundraiser, anything!!  Please consider signing up so a child may find themselves in the home of a loving family for Christmas 2012.  I have already been scoping out special ornaments for P, and there is no way she will be home by this Christmas.  Holidays are such a special time, and these children deserve the opportunity to share and be a part of these many blessings we so often take for granted.

31 for 21, Day 20: I have been forever changed... and an update!!

***Update on our adoption!!!*** I just received word from our adoption agency that our dossier is to be submitted to the government officials in P's region TOMORROW!!! :)) We should receive our travel dates for our first trip to meet her within the next two weeks!!! :)) SO excited!!

* * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Day 19's post can be found on our family blog HERE on the new prenatal testing available.  This post is somewhat related, and I promise it will be my last on the subject.  It's a controversial issue, and I'm not fond of debates.

This is another one of those posts that has nothing to do with Down syndrome.  I have been completely moved by a documentary in ways I didn't know were possible.  I'm hoping more and more people will watch and be just as moved also.

Well, if it weren't for Down syndrome this documentary wouldn't have come to my attention due to all the hype about the new prenatal test on the market which I've been discussing.  When I first started watching the video, I thought this was going to be about Hitler and people's views of the Holocaust.  But it turned into so much more, conveying such a powerful message.  Please take a few moments to watch- yes it's a little long, but it is worth every minute I assure you.  I urge you, I beg you... please watch.



As I stated in a previous post- I thought I was pro-choice when it came to the whole abortion debate.  I could never have one myself, but I didn't believe it was my place to tell another woman she can't.  Of course I have expressed my concerns regarding women terminating their pregnancy due to a DS diagnosis, but how could I expect a woman to carry a baby to term if she doesn't have the means to provide for this child or if she was raped?  Of course adoption is always an option, but that whole mentality has been completely blown out of the water for me.  Please share your thoughts regarding this documentary, and if you agree with the message I urge you to continue sharing it with others.

31 for 21, Day 16: P's room!

Before I get started on today's post, I need to give a shout out to one of the sweetest people I've had the pleasure of meeting online in just the past few days.  Jane has a heart of GOLD and it took me all of 5 seconds to learn this.  She advocates with all her heart and soul for the waiting angels of Reece's Rainbow.  You can find her blog by clicking her name above or from one of the two buttons in my sidebar- Forget Me Not Fridays and Sharing Sundays.  Jane was SO so sweet to include P in her blog post for today!!  I am so humbled. <3  Thank you SO much, Jane, for all  you do not only for us but for all the precious littles on Reece's Rainbow.  Jane even has a BIG giveaway going on right now- you can find all the details HERE!!

Ok, on with our regularly scheduled blog post..... ;)

We are going to begin working on P's bedroom very soon!! :)) Sooooo excited and can't wait to fill it with all things girly!  Right now it's a boring blah spare room.... it started out as an office/computer room when Mike and I first moved into the house, before we had kids.

This photo was taken about 10 years ago- don't even ask me what the mess is all over the floor!

Then it was converted to Justin's bedroom when he was first born, decorated in an underwater theme.

 


With the surprise news of Evan on the way we built an addition over the garage, adding two rooms since that worked better with the floor plan than just trying to add one. So, with the addition Kaylin and Justin each got new rooms.  Evan was put in Kaylin's old room which was my favorite nursery, decorated in neutral colors (though shame on me for not taking any pics yet since Evan has been born, and he is up there napping as I type this so they will have to wait a bit longer), and Justin's old room was going to be converted back to an office since we had to remove the closet to extend the hallway.... We slapped some plain brown paint on the walls, moved in the spare mattress and box spring, collected odds and ends that didn't find a home elsewhere, and called it a day.

But now it has much more exciting plans ahead!  

Cheerful Whisper is the color we've selected for the walls in P's room. :)  I was just browsing the Wallies website- I decorated Kaylin's new room with some super cute hearts and flowers from one of their collections (purchased at Home Depot).  Found these adorable fairies while thinking it would be fun to keep a butterfly theme for P's room.  These are so cute!!

These butterflies are really cute too...

I am getting more and more excited.....Can't wait to get started!!

31 for 21, Day 15- It's all about Awareness!

If you missed the post for Day 14 you can find it on our family blog HERE on why I'm glad I have a child with Down syndrome! :)

A great article was posted at LifeNews.com just two days ago and I want to share it with my readers.

http://www.lifenews.com/2011/10/13/down-syndrome-awareness-helps-stop-abortions-on-special-kids/

Now I will note here that I have not been one to be adamantly pro-life.  While I could never myself go through having an abortion, I don't feel it is my place to tell another woman that she can't.  It is her right to choose, and her life-changing decision she will have to live with throughout the rest of her life here on earth.

That being said, it makes me sick to my stomach thinking about how 9 out of 10 women who receive a prenatal diagnosis of Down syndrome feel they have no choice but to abort their babies.  I believe a huge factor in these awful statistics is the physician's delivery of this diagnosis.  Many doctors to this day still encourage parents to terminate when they receive a Down syndrome diagnosis.  I want to walk into these doctor's offices with Evan in tow, and wake them up to reality!  I am willing to bet a large amount of money that these doctors' lives have never been touched by someone with Down syndrome.  I am willing to bet they have never had any kind of social interaction with a person who has Down syndrome.  Before they are given the power to guide someone's future, they should be fully educated.  Perhaps go back to school and earn a degree in the knowledge of Down syndrome and what life is REALLY like.  Hmmmm... maybe I should start a class right here in my house!  Down syndrome 101 ;)  I will have to work on that syllabus....

The article above best states these concerns here:

Certainly some are, but study after study has found that up to half of all women accepting prenatal testing did so without making an informed decision, and that half did not expect they would have to decide whether to abort following a prenatal diagnosis. To his credit, Caplan recognizes that prenatal testing can result in uninformed and unexpected decisions to terminate, due to medical professionals and general society often having “nothing good at all to say” about DS. Indeed, one study has found that almost a quarter of physicians actively urge abortion, or emphasize the negatives about DS in order to encourage it. Even for those committed to non-directive counseling, a majority of physicians and genetic counselors have said that they would abort following a prenatal diagnosis for DS, which no doubt affects how a diagnosis is presented. Other recent studies also have found that a significant percentage of adults, youths, and physicians still hold outdated views about DS and would prefer that children with DS were segregated from, rather than included in, the community and typical classrooms. Therefore, those who choose to abort often are seeking to avoid an inaccurate, uninformed, and overly negative view of a life with DS, which is not supported by the current research.


And I have found these out-dated stereotypes still exist even in my children's elementary school.  I've had a few conversations about Evan with one of the teachers who has an adult brother with DS.  She was super excited when I first told her about Evan's birth, and was very positive about the whole diagnosis thing, sharing how her brother holds a job in a neighboring town.  Yet the past couple times I have seen her, she has questioned me about where he will attend school... and she always seems surprised when I say he will attend right here in the "regular" elementary school.  This really caught me off-guard since #1- her obvious connection to DS with her brother, and #2- there is at least one other student in the school with Down syndrome.  I guess she is just thinking of her brother's educational experiences over 20 years ago... I don't know.  But hopefully it won't come as a shock when Evan is sitting in her class a few years down the road!


It's all about spreading awareness.... Down syndrome isn't the end of the world.  It was merely the beginning of mine.... <3

31 for 21, Day 13- more questions! :)

Yay!  New questions!!  Here's the first:


Erin B said...
Does Down syndrome occur equally across all races? It seems as though I mainly see people of caucasion ethnicity with Down syndrome. 

Good question!  Down syndrome is not related to race- it occurs across the board, but according to statistics the number of live births does vary slightly by race.  The following is taken from the Texas Department of State Health Services:


Down syndrome prevalence is known to vary by race/ethnicity. Hispanic infants were found to exhibit higher rates of Down syndrome than other infants, even after differences in maternal age were considered (CDC 1994). Rates for Hispanic, white, and African American infants were respectively 11.8, 9.2 and 7.3 per 10,000 live births (CDC 1994). This may be due partly to differential use of prenatal diagnosis services. Racial composition of women who use prenatal screening services varied from the racial composition of the U.S. population (Meaney 1993), though racial difference in usage was not found in another study (Naber 1987). Also, use of prenatal diagnosis services and abortion significantly reduced the birth prevalence of Down syndrome among white women but not among women of other races in Atlanta (Krivchenia 1993). That was not supported in a Los Angeles study ( Wilson 1992). Racial differences may also reflect differential under-diagnosis of the defect at birth. 


Sadly, 9 out of 10 babies given a prenatal diagnosis of DS are aborted. :( I can't begin to express how tragic this truly is.  I sit here snuggling my precious Evan, thanking God each and every day he gave me this precious gift, how LUCKY and BLESSED I am to have Evan in my life, and many people are throwing it all away.  So, the fact that so many babies blessed with designer genes are aborted will skew statistics also.  Add in new prenatal testing and the rates will rise even more I'm sure. :((


And our second question:


Sue said...
A question for you -
I have been supporting a few kids on RR this year and learning more about DS since I had a high liklihood of having a baby with DS this year (it ended up she did not have DS). Anyway, this past Sunday a mom at my church and her daughter (about 6-7 years old) were admiring my baby and trying to get her to smile, etc. I have had the feeling the little girl has DS but am not sure. I've studied her face in our church photo album but can't tell. Is there a way to ask the mom in a diplomatic way or should I just ask our pastor?

Also, we have a little boy in our son's boy scout troop with DS. He started out in the same grade as my daughter and is now 3 grades below that (not advancing). Again, I want to strike up a conversation with the mom and ask how her son is doing and if I can be of any help to her (not sure how, just want to offer because she sometimes looks tired -- but aren't we all!). She seems sort of isolated at the meetings and I'm never sure what to say to her. Any suggestions?



Since my Evan is so young, I wasn't sure how I would feel as a parent of a school age child with DS.  I posed the question to my fellow DS mommies at Babycenter.com and really liked this response:


It depends on the reason for asking. To me, it sounds like the person is interested in Down syndrome and probably wants to ask questions, but is worried about offending someone. As shema4t4 said, being yourself and being friendly is all that's required.

In the first case, it just sounds like she's curious. If she feels like she has to ask, asking the pastor is a good idea. He will probably know what the mother would want him to say, and if her daughter doesn't have Down syndrome, she'll have avoided an awkward moment. Not mentioning the scrutinizing of the directory picture is another good idea. :( She might consider not asking, and letting it come up or not.

In the second case it sounds like the person doesn't know how to start to be friendly, and it's good that she asked, because "How is he doing?", the question she proposed, is not a good question. A parent can hear that as an inquiry into how the child is doing in school/milestones, etc. That's personal, and parents should be in charge of opening that subject if they want. I find,from people who already know us, "What's James up to lately?" is a better question, because I can answer it any way I want. Since she doesn't know the mother well, she needs to consider whether she wants to be a friend, or whether she just wants to ask questions/offer help. If she wants the first, she should, as with any acquaintance, find a common interest. Book recommendations are something I often ask for, because I love to read and I know I'll follow through--I'll say I've just finished [blank] and am looking for something new--does she have any recommendations? No special approach here, just what usually works with anyone else. If she is feeling isolated, and the person is good friends with one of the other moms, after she has talked with the mom of the child with DS, she could introduce the friend and mention something they have in common.

I agree that offering help, kind as it may seem, may not give the right feeling to the mother. She almost certainly doesn't want to be pitied, even if she does seem tired. :) There are things she can do to help, though, that will be truly nice. Taking pictures at Scout outings and making sure to get a good one of her son and sending it to her, with "So glad [blank] is in Scouts with [son]. I love this picture of him!" and meaning it. Doing the same for other boys in the troop so she doesn't feel singled out. Making a point of greeting all the other boys in the same way. Being interested but not nosy. I think it's cool that she asked rather than bulldozing ahead. Some days I don't mind frank questions and can answer them easily and nicely, but I don't always feel like it. Everyone probably has a different idea of what would work best for them, but I think being normal and friendly is good advice, and works however bad or good a day we're having. :)

I totally agree with the above suggestions- just be yourself and try to strike up casual conversations that are not focused on DS.  


Thanks so much to both readers for asking great questions!! I am truly enjoying these- keep them coming!! :))

31 for 21 Day 12: i have a voice

Powerful words.  Stunningly beautiful photos.  All God's children.



Please please ask  me some more questions about Down syndrome! :)

31 for 21, Day #11- Perspective

This post was eye opening, and oh so true.  Please take  a moment to read.

I still browse through the little cherubs on Reece's Rainbow who are still waiting; in another month I will be advocating for one little beauty in particular as the Angel Tree project gets started.  You too can sign up to spread awareness and help a little one find their forever family!  There are still 45 little angels who need a Christmas Warrior- simply someone to spread the word about them and try to raise some donations to their grant.  You don't need a fancy giveaway, just simply advocate for them and do what you can.  Every little bit helps, even if it's in the form of prayer alone.

While looking through the little angels waiting, of course the first to draw your attention is the photo.  Since these children aren't surrounded by loving families and don't always have the blessing of a full tummy- it's not always going to be easy to coax a smile out of them for the camera.  I'm sure they don't know what a camera even is, and how often do they have reason to smile?

The next thing to look at- medical condtions.  Of course there are diagnoses which are quite serious, but there are also plenty with long medical terms that are fairly common and highly treatable.  Yet when strung together, it sounds like this child has too much going on and gives prospective parents doubts about whether or not they will be able to care for a child with what could be serious needs.

Then there are diagnoses that are found to be false- one family found this to be a blessing though, for had the child been properly diagnosed, he probably wouldn't have been available for adoption due to this particular country's requirements for special needs adoptions.

Next, you read on about their milestones they have and haven't met.  Do consider that these records are quite often outdated.  Also look at how old the child looks in the photo compared to their actual birth date (though children in orphanages grow slower and often look quite younger than their actual age).  Sometimes updated photos are available but written records are not until you've committed to a child.  Sometimes like in our case, they aren't available until at least the dossier is submitted but possibly not available  until we travel to meet her in person- this goes for medical conditions also.  We have received no information on Pauline aside from what was listed on her RR page, which wasn't much at all.

So when looking through these little sweethearts on Reece's Rainbow- do remember they are children first, and had they been your biological child, I'm sure you would do whatever possible to care for the love of your life.

These children deserve to be the love of someone's life.  Please help spread the word.  You'll be hearing more about this little love muffin next month. ;)

Giveaway WINNERS!!!

Yayyyyyyyy the fun part!!!  I entered all names into a spreadsheet... an enormous spreadsheet, for there were 1,847 entries when all was said and done!!  I entered names in the order in which the donations were made, and then added entries from comments left for sharing the giveaway on Facebook, Twitter, or blogging at the end.  I also included a couple names who donated through the Paypal button directly to our FSP instead of through the ChipIn just in case they meant to enter the giveaway also (all winning numbers did happen to enter through the ChipIn).  I used the website http://www.random.org/ entering 1 as the minimum number and 1847 as the max.  Our winners are:

iPad2: #726 Joyce G

Tastefully Simple Gift Basket: #68 Ruth E

Yellow and Gray Damask Necklace: #1267 Wendy B

Ombre Purple Scarf: #1493 Ronald C

Infinity Scarf: #1227 Donna M

Congratulations to all the winners!!  And a HUGE thank you to EVERYONE who contributed- thank you's will be sent out this week. <3  You truly have made a difference in the life of an orphan.  Make sure you save your confirmation e-mail from Reece's Rainbow for tax purposes.

I will send an e-mail out to the winners requesting mailing addresses for your prizes.  Please let me know if you didn't receive it.

With the two additional donations to our FSP during our Giveaway, the total amount raised was $3,980!!  God is good.

We are still waiting to hear from P's country with travel dates for our first trip- crossing our fingers for the end of October, but prepared to receive a date in November.  This waiting game is tough!  We love you, babygirl, and can't wait to meet you and wrap our arms around you!

31 for 21, Day 9: Lord, I Need You

Please pray for all the little ones on Reece's Rainbow, the angels still waiting for their forever family... so deserving of love, affection, belonging.

And please continue to ask any questions you may have about Down syndrome!

31 for 21, Day 8!

First, I want to express a HUGE thank you to all those who participated in our Giveaway!! I will be sending out individual thank you's hopefully next week. <3 I will be working on adding all the entries into my spreadsheet over the course of the weekend.... crossing my fingers I will be ready to announce winners on Monday! I will keep you posted on the progress. :)

Today's 31 for 21 post is again found on our family blog- today's subject is an Evan brag! :)) Be sure to check it out HERE.  Enjoy your weekend, everyone!!

31 for 21, Day 7, and a LAST CALL!!

Today's 31 for 21 post can be found on our family blog HERE with the topic "One thing I LOVE about Down syndrome." :)  Yes, I limited myself to just one or I could go on for a while I'm sure! ;)

Also, our Birthday Bash Giveaway ends TONIGHT!!!!  Hurry Hurry Hurry and enter before it's too late!!  Several awesome prizes up for grabs, and a tax-deductible donation towards saving the life of a child- doesn't get much better than that! :)  Please consider helping us bring our little girl home, and please share share share our blog with others on Facebook, Twitter, whatever!!  I've had friends write the most beautiful e-mails and blog posts- I am and will be forever grateful.  Just reading the words from the hearts of friends touches me beyond what I can express.  Thank you thank you THANK. YOU.  The winners will be announced hopefully Monday- after I add all the entries into my spreadsheet (which is mostly done to date) and confirm donations through Reece's Rainbow.  Best of luck to all of you!!

31 for 21, Day 6: Time's running out!

This post is going to be short since I'm sick today.... feeling like I've been hit by a Mack truck.  But.... We're down to our final 2 days of our Birthday Bash Giveaway and I wanted to throw out something extra in honor of Down Syndrome Awareness Month.  If you make a donation of $21 for that extra perky chromosome, you will receive 3 entries instead of just 2!  One entry for each of P's 21st chromsomes. :)  So go hurry and donate, spread the word- this giveaway ends tomorrow night!!!

First up- the Big Kahuna.... an Apple iPad 2 

32 GB with Wi-Fi

Your choice of black or white as well as engraving

Retail Price $599
***UPDATE***
Winner of the iPad 2 will also receive a leather smart cover in your choice of color!

 Next up:  Tastefully Simple Share the Love Gift Basket

Share the Love™ includes:

• Bountiful Beer Bread Mix®
• Homestyle Biscuits & Gravy Mix
• Chicken Tortilla Soup Mix
• Cinnamon Muffin Melt Mix™
• Chocolate Ugly Cake Mix™
• Wahoo! Chili
• The Trio
• Spinach & Herb Dip Mix
• Roasted Garlic Infused Oil
• Tuscany Bread Dipping Mix™
• Seasoned Salt
• Perfectly Potato Cheddar Soup Mix
• Oblong Storage Tote**
• retail value: $124.95

Baby Teether and Necklace for Mama all in one!!

This chic teething necklace is made with premium 100% cotton, beaded with natural unfinished beads, and knotted for a beautiful fashionable accessory for any mama to wear!  The necklace is tied back into a cute bow with satin ribbon.  But best of all, you don't need to be a mama to rock this necklace!!  This necklace is beautiful to wear on just about any occasion.  Handcrafted by my dear friend, Jenna- please go check out her Etsy shop- she has the most beautiful things there from adorable paper products to beautiful diaper cakes and gorgeous jewelry.  She is one of the craftiest people I know! 

Another super sweet crafty friend of mine, Erin, is donating this beautiful ombre purple scarf in super soft chenille.  She takes custom orders and can crochet just about anything!! You can find her on Facebook HERE. I have to tell you, last winter I ordered the most ADORABLE angry birds hat for Justin and he absolutely LOVES it.  

Erin will also be graciously donating a hat- photo coming!!

Our cousin, Jazmin, is generously donating this beautiful infinity scarf- wear it long or wrap it twice for a tighter look and feel!  You can find her Etsy shop HERE- beautifully crocheted items as well as jewelry and other art items- check them out!

Sooooooooo.... how do you enter to win these awesome prizes??  Super easy!! 

Make a donation using the Birthday Bash ChipIn Widget above- this is tax deductible!!  It goes through Reece's Rainbow so PLEASE be sure to specify "P for the LIVINGSTON FAMILY" in the comment section while checking out.  Very important, otherwise P doesn't get her birthday present!

$10 = 1 entry

 $21 = 3 entries

  $25 = 5 entries

    $50 = 15 entries

  $100 = 50 entries

After you make a donation, you can get a freebie entry each day you share on Facebook, Twitter, or if you blog about it (please share a link) - just be sure to leave a comment on this post when you do so.  PLEASE spread the word!!  This Giveaway will end October 7th at midnight Eastern Time.  This Giveaway is open to US and Canada residents only.  Each prize is separate aside from the iPad 2 and cover.  Winners will be chosen using www.random.org.

Happy Birthday, baby girl.... I can't wait to throw you a big birthday party of your very own.... You are so special and deserve a special day all about YOU. <3

31 for 21, Day 5: Mosaic Down syndrome

Question:   On Reece's Rainbow, I read that it was thought P has Mosaic Down Syndrome. How is this different from the other types of Down Syndrome? Is it a milder form? 


Excellent question!!  As most of you know, Down syndrome, or Trisomy 21, is when there is an extra copy of the 21st chromosome.  With your standard run of the mill Down syndrome that 95% of those with DS have, just like our Evan- the extra chromosome failed to separate before or at conception on either the sperm or the egg.  As the embryo grows and cells replicate, the extra chromosome is present in every cell of the body.  


In 1% of the cases, the nondisjunction of chromosome 21 occurs after fertilization- after cells already started replicating.  There is now a mixture of cells with 46 chromosomes and cells with 47.  This is mosaic Down syndrome.  Translocation Down syndrome is the third type and accounts for the remaining 4%.  With Translocation DS, part of the 21st chromosome breaks off and attaches to a different chromosome, usually number 14.  You can read more about what causes the three types of Down syndrome at the NDSS site HERE. 


Some may consider mosaic Down syndrome to be "milder," but in reality there haven't been many studies conducted comparing the two.  From ds-health.com:


At the present time, there is not much research on the similarities and differences between simple trisomy 21 and mosaic trisomy 21. One report published in 1991 on mental development in Down syndrome mosaicism compared 30 children with mosaic Down syndrome with 30 children with typical Down syndrome. IQ testing showed that the mean IQ of the mosaic group was 12 points higher than the mean of the non-mosaic group. However, some children with typical Down syndrome did score higher on the IQ tests than some of the children with mosaic Down syndrome.

The Department of Human Genetics at the Medical College of Virginia has had an ongoing study project of children with mosaic DS. In a survey of 45 children with mosaicism, they found that these children did show delayed development compared to their siblings. When 28 of these children with mosaicism were matched up with 28 children with typical Down syndrome for age and gender, the children with mosaicism reached certain motor milestones earlier than children with typical DS, such as crawling and walking alone. However, the speech development was equally delayed in both groups.

I believe the assumptions that P has mosaic Down syndrome are made by looking at her photo and not seeing many of the common facial features of children with DS, and also from the description of her being "high functioning."  We have not received any of her medical records, so we do not know her specific diagnosis or how that diagnosis was made.  Down syndrome and mosaic Down syndrome are diagnosed by blood tests, and these tests are expensive.  We don't know when P's birth parents turned her over to the orphanage, and if it was at birth- we don't know if there would be money to run this test on an orphan. We intend to ask the orphanage director about how her diagnosis was made when we arrive for our first visit.  Regardless, once we bring her home we will have the test run again along with all the other bloodwork she will have taken.  


Thanks so much for asking!  Please keep the questions coming!  I also answered a question today on our family blog regarding my two cents about "high-functioning" so be sure to check it out HERE! :)

31 for 21, Day 4: Crazy Hair Day!

Today's post can be found on our family blog- don't miss some cute pics!! :)  Also, just 3 days left in P's Birthday Bash Giveaway- don't miss out!!

31 for 21 Day 3- Answers to Questions! :)

Thank you thank you to the two people who asked questions!!! :)) And they are excellent questions at that. :)
Questions:
Young Christian Woman said...

We are in the process of adopting with Reece's Rainbow, and we fell in love with a little girl who did not have Down Syndrome and are hoping to bring her home next year. One of the things I couldn't find much information on as I tried to research Down Syndrome adoption was what the actual, day to day differences are with a child who has Down Syndrome. I am guessing it's pretty much hard to say because all the kids are so different, but maybe you could try to describe the differences? Thanks!

October 2, 2011 12:00 PM

Anonymous said...

Can you tell me how hard is it to care for a child with down syndrome? How is it different from caring for a child who does not have D.S.? Thank you.

Being that Evan is still young- only 23 months, I may not be able to personally answer these as well as someone with an older child, but I'll start by giving you my two cents worth as far as the day to day differences between children with and without Down syndrome.  The photo above can pretty much sum up how awesome it is! :)


When we are out and about- I still think there are many people who don't realize Evan has Down syndrome.  I was stunned to find this out at the bus stop just a couple months ago when school started this year.  One of the moms who has known our family for three years- has seen Evan daily at the bus stop for a year and a half- had no idea he has Down syndrome.  My point- there are very few differences at first glance between Evan and his 46-chromosome carrying peers, especially at this age.  I do think people may mistake him for being younger due to his smaller size (he is actually very tall for a child with DS but around the 50th percentile on the "typical" growth chart), he isn't walking yet, nor talking.  He's just riding along in the stroller or grocery cart looking extremely adorable and sociable, and people notice his red hair right away. :)

Now as stated in the first question, yes, there can be huge differences across the board in children with DS and how that extra chromosome has affected muscle tone, and whether the child was born with a heart defect or any other major health concerns.  We were the lucky ones- Evan was born perfectly healthy with no heart defects or anything else requiring major surgery.  The above photo was taken at 12 months when Evan had an inguinal hernia repaired and undescended testicle brought down- very minor issues that can happen in the general population as well.  He has reflux which is very common in the general population (our older son had reflux also) and that's pretty much the extent of his medical needs.  He does have regular check ups with a few specialists since children with DS are more prone to hearing and vision problems- he sees an eye doctor once a year and an ENT every 6-8 months to have his ears cleaned out; hearing tests are once a year.  He was seeing a GI doc for his reflux but that has been under control, so we just continue with our regular pediatrician for treatment.  He has been seeing the pediatrician about once every 3 months so far, but I know that will be slowing down after our next visit at 24 months.  He saw a nutritionist when we were beginning solids, but she was most impressed with his diet as far as variety and quantities go, as well as his growth patterns, so we will only go back if a need appears.  If children were born with a heart defect, obviously they would need to be followed by a cardiologist.

There can be huge differences in children with DS and their muscle tone issues- and this is what sets them apart from their "typical" peers.  Some can have trouble swallowing, some can have more trouble with their trunk, legs, and hips, some can have more trouble with their arms.  Most all children with DS have speech and language delays.  A few months ago I wrote an entire post on our family blog dedicated to muscle tone- what it is and how it affects children with DS, found HERE.

Evan does have some issues in the feeding department regarding swallowing liquids as well as chewing solid foods.  I had someone ask a feeding question on our family blog and wrote a quite extensive response- you can check it out HERE.  Feeding is really the only area I'd say Evan requires *extra* care.  And really, it's no big deal.  We add thickener to his drinks, and we cut his food smaller.  He receives feeding therapy once a  month and we are given little exercises to work on improving his jaw strength.



With speech- Evan only has a couple verbal words right now, but he has at least 20 signs.  Above is a little video of him demonstrating just a few- the attention span only lasts so long when a camera is involved. ;) I keep telling myself I need to write them all down, because I can never remember them all when his therapists ask!  I guesstimated about 15-20, but when the speech therapist asked which ones, I easily rattled off 15 knowing there were a lot more.  We own just about the entire Signing Time and Baby Signing Time series which is absolutely FANTASTIC.  These videos have taught our entire family- I was quite worried how I would do trying to learn another language, but these videos make it SO easy.  And they are absolutely adorable- all three of the kids love them.  Evan's speech therapist visits the house with his occupation therapist three times a month- once a month for feeding as stated above, and two more times for speech and fine motor skills.

Evan has NO problem climbing on top of the play table to get a better view of Baby Signing Time!

Another strength for Evan in addition to signing- gross motor.  The boy can climb ANYTHING, and is super duper fast at crawling and cruising furniture.  Seriously, blink your eyes and he is across the room.  We are working on walking- he is now taking steps while holding hands, but lacks the confidence to take steps on his own.  His physical therapist and I believe it is truly a confidence issue, period.  He has the strength and coordination, he just needs the guts to try it on his own.  His arm strength is crazy- if you clicked the muscle tone post above you saw him doing his pull ups on the baby gate.  He has also taken to doing this on the entertainment center, using the shelves and knobs as a rock wall!  I haven't caught him with the camera yet on that one.  Evan's physical therapist visits twice a month.

Social/emotional- he has been pretty much on track according to his general educator who comes once a month.  Intellectually he's right up there too.  Kids with DS are often misjudged as not being very smart simply because their speech is a little slow or slurred.  This is a muscle tone issue and not an intelligence issue.  They also can understand much more than they may be able to express verbally.



So I have rattled off a bunch of therapies- Evan receives 1-2 therapies a week: Every other Monday is physical therapy (45 mins each), 3 Wednesdays a month is OT and speech/feeding (feeding is an hour; fine motor/speech sessions are 30 mins), and the first Friday of the month is when the general educator comes to play for 45 minutes.

As Evan grows older, I'm sure the gaps may grow more, but you really can't compare kids today with adults you may have seen with DS.  The adults with DS today didn't have half the opportunities our children have now with therapies and education plans tailored to their specific needs.  Students with DS today are graduating high school, attending community college, and even living on campus to participate in college programs.  The future is SO bright, and I know the opportunities will be growing and growing by the time Evan is ready to graduate high school.

So now that I've rambled a bit- I will tell you that Evan has been my easiest baby of my three children.  He was by far the best sleeper and still is, he has the most easy going temperament and will go with the flow of most anything.  I hate to be stereotypical, but he truly is a happy child.  He is full of smiles, but also can have a temper when he doesn't get his way.  He's a busy busy bee, and keeps me on my toes at all times!!  Above all else, he is an extreme joy.  I have truly enjoyed the slower pace a baby with DS brings- milestones come a little later so you get to enjoy each step a little longer.  The baby gear gets used a little longer before it has to be sold at the next yard sale.  I can't say clothes last longer since Evan has been a fast grower, but oftentimes children with DS are smaller and stay in clothes a little longer.  He is more alike than different compared to his siblings and "typical" peers.  He has his own personality, and shares common traits with his brother as well as his sister.  He is a mama's boy and loves snuggles- he will come over and nestle right into my neck for a brief moment between playing, and it melts me every time.  He loves reading books together as well as singing songs.  So, caring for him looks a lot like caring for any other child at his level.  Our weeks are a little busier with therapists coming to the house, but overall it has been just like raising my other two children.

I'll leave you with the trailer of an ADORABLE video titled Deedah- a documentary of a brother and sister, the brother having DS.  I just purchased this at our Buddy Walk a few weeks ago and we all LOVED it.  Justin has watched it several times- he can't get enough! :)  You will see that Jonathan in the video is much like his peers.

I hope I have answered both questions (you may have read more than you were prepared for!).  If you have any other questions please please do ask them!  I would be more than happy to clarify in any area or answer a totally different question.  Thanks so much for asking!! :)