Wow, it's the last day of October and National Down Syndrome Awareness month! I missed several days of blogging, but that is ok. I'll try not to drop off the face of the earth now! But did you know that November is Adoption Awareness month??? For us, those two months go hand in hand. I'm sure I'll be posting a few things about adoption during the next month. :-) I still have A LOT of catch up posts to do and several posts rumbling around in my head. Hopefully, I can get some of those out this next month.
I think a lot of the things I posted about Ds have been more "medical" things and not really "big picture" things. So, I've borrowed the following facts to help you see the "big picture". Keep reading below, as I have a neat thing to share with you.
Down Syndrome Facts - Taken from the DSAW-Fox Cities brochure
Down syndrome is the most commonly occurring chromosomal condition.
One in every 691 babies is born with Ds.
There are more than 400,000 people living with Ds in the United States.
Ds occures in people of all races and economic levels.
80% of children with Ds are born to women under 35 years of age.
People with Ds have an increased risk for certain medical conditions but many of these conditions are now treatable, so most people with Ds lead healthy lives.
A few of the common physical traits of Ds are low muscle tone, small stature, an upward slant to the eyes, a single deep crease across the center of the palm.
Every person with Ds is a unique individual and may possess these characteristics to different degrees or not at all.
Life expectancy for people with Ds has dramatically increased recently from 25 to 60.
People with Ds attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
All people with Ds experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
And may I add - ALL people with Ds are loved unconditionally and cherished by their Heavenly Father, just those without Ds are. I believe God has a unique plan and purpose for each of their lives.
Ds Blog: http://dsdaytoday.blogspot.com/ I recently came across this blog from a link on one of the Ds yahoo boards I'm on (not adoption related). I was fascinated by what I started reading there. She talks about treating Ds as a "biomedical" condition. VERY, VERY interesting stuff! She posts LOTS of nutritional information as well that I find very interesting. All of her info is a bit overwhelming at first, but the "New? Start Here" tab is a great way to start. I also realize that much of what she posts about may be somewhat controversial in the Ds world, but I've never been one to just go with what is "normal". LOL I hope to start implementing some of these strategies with the boys very soon.
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I've been asked many times if Elijah and Jonathan are brothers. Nope! :-) Are they from the same orphanage? Nope to that one too. I've also been asked if most kids with Ds (from Ukraine?) have blue eyes. A definite NO to that one too. I explain that they get the color of their eyes from their parents, just like you did. I will never know what Jonathan's parents look like, but as I've said before, we had the extreme honor of meeting Elijah's birth parents on 3 different occasions. (Twice at the orphanage and once while we were in Ukraine adopting Jonathan. Yes, they took an overnight bus, not even the "luxurious" train, to visit us for a couple hours.) Anyway, I can definitely say that Elijah very strongly resembles his parents and other family members that I have seen photos of.
This got me thinking about a post Michelle did a couple years ago about how much Ruby looks like her brother did when he was little. Here is the link http://zoromski.blogspot.com/2009/04/photographs.html I love what she says: "But really, even though Ruby has some features that are shared with other people who have Down syndrome, she's still genetically more like us, her family." Please click over and check it out. The resemblance is amazing!
I've been meaning to post this video all month, and this is a perfect way to end the "31 for 21". It well worth the 5 minutes to watch it. Enjoy!
MORE ALIKE THAN DIFFERENT!
Ok, now that October is over, maybe I can get to sleep before midnight...maybe...
Monday, October 31, 2011
Saturday, October 29, 2011
Flashbacks and Regression - UPDATE!
A couple of weeks ago, I posted THIS about Elijah's behavior during our home school group when he was in the nursery with me. It was NOT good. Elijah's birth mother is reading my blog now. (How fun is that??? :-) Hi Tanya!) She was just as upset about his behavior as I was.
But, I am VERY HAPPY to report that yesterday, in the same nursery with the same kids, he did GREAT!!! I prayed over him the night before, which I know helped tremendously. I also brought our little portable DVD player and played Baby Signing Time DVDs. I know that helped too to have something familiar. I still watched him like a hawk, and I don't remember a single time he was aggressive towards any of the other kids. Praise God!!!
Thanks for letting me share!
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Ds Tidbit: This one is new to me. I learned this from the "After the Rainbow" yahoo group the other day. I thought it was just the way Elijah was and didn't realize it was somewhat common to individuals w/ Ds. It's called Pectus Carinatum or "pigeon chest". Basically, it is a deformity of the chest characterized by a protrusion of the sternum and ribs. If severe, it can cause medical issues. But our pediatrician did not think Elijah's would cause any problems at this point. It can worsen in the teenage years.
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| It is hardly even noticeable here. |
Friday, October 28, 2011
One year ago today...submitted!
Yep, last year on October 28th, our dossier (for Elijah) was submitted to the SDA in Ukraine to officially register us as adoptive parents. I blogged about it HERE. Wow...what a year it has been!
We've added not just one, but two beautiful boys to our family. Between both adoptions, I've flown to Ukraine three times and spent about 9 weeks of the last year there. You would think I should be fluent in Russian after all of that! :-) Nope, not even close...
But all the glory goes to our Lord and Savior, Jesus Christ! Without Him, NONE of this would have possible. To Him be the Glory! I praise Him for ALL of the beautiful children the Lord has given me...whether they grew under my heart or in my heart.
We've added not just one, but two beautiful boys to our family. Between both adoptions, I've flown to Ukraine three times and spent about 9 weeks of the last year there. You would think I should be fluent in Russian after all of that! :-) Nope, not even close...
But all the glory goes to our Lord and Savior, Jesus Christ! Without Him, NONE of this would have possible. To Him be the Glory! I praise Him for ALL of the beautiful children the Lord has given me...whether they grew under my heart or in my heart.
Wednesday, October 26, 2011
Single Palmar Crease
Ds Tidbit: Some individuals with Down syndrome have a "single transverse palmar crease". What that means is the two creases in the palm that most of have are fused into one crease.
I remember Michelle posting about this during her adoption of Lilya, so it was one of the first things I checked on Elijah during one of our first visits. Funny thing is, I only checked one hand - his left. After being home for three weeks, I was wiping his hands after supper and noticed he had a single palmar crease on his right hand! I thought it was pretty cool! :-) I have no idea if it is "typical" for individuals w/ Ds to have it on one hand or both. I'd love to hear from some of you "Ds mamas" out there...do your children have it one hand, both hands, or neither? (Jonathan doesn't have the single crease on either hand, although the two creases are very close together.)
Just in case anyone is wondering, there is absolutely no health issues associated with this. :-) Just one of those fun Ds things!
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| Elijah's right hand |
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| Both together |
OH, and I forgot to add that Jake and Ashley passed court on Monday and are now officially parents of Carter Benjamin!!!! Congratulations to the Gibson family!!!
Sunday, October 23, 2011
Court for Carter - Please pray!
Jake and Ashley will stand before a judge tomorrow (2pm EE time, 6am our time) and ask to be named legal parents of Carter Benjamin. Please pray all goes smoothly! Please pray for favor with the judge/court officials and we hear great news in the morning. One less orphan! Check out their blog here: http://homeiswhereitsat.blogspot.com/
Thanks so much for your prayers. :-)
(Yes, I missed a few days of blogging. I've decided sleep is more important! We had a super busy weekend and I'm still wiped out. I'll share about our weekend in the next few days. :-))
Thanks so much for your prayers. :-)
(Yes, I missed a few days of blogging. I've decided sleep is more important! We had a super busy weekend and I'm still wiped out. I'll share about our weekend in the next few days. :-))
Thursday, October 20, 2011
Sarah's Hairbands for Logan
Ds Tidbit: Children
with Down syndrome do grow and develop differently than most other children and
generally tend to be shorter and shorter extremities and fingers.. Therefore,
Ds growth charts have been developed. They can be found HERE.
Speaking
of growth charts, Jonathan had his 15 mo check up today. He continues to GROW!
He now weighs in at 23# 13oz and is 31 1/4" long. He grew almost an inch
and gained over 2 pounds in the last 2 months! No wonder my arm aches after
holding him for a few minutes. :-) (It doesn't help that he doesn't "clamp
on" with his legs, so I feel all 23# pounds of him.) So, on the Ds chart,
he is over 90% on both height and weight now. Amazing! He is just a BIG boy!
Many people have commented how much he's grown since he's been home. I didn't really believe them, but now I do. :-) Plus, I was looking at his Gotcha Day photos last night (I'll post them soon) and I can definitely see the difference.
Ds Blogs: http://ralphcrew.blogspot.com/ & http://psalmsixtyeight.blogspot.com/ are both blogs by my friend, Stephanie. She adopted 2 boys w/ Ds from Elijah's orphanage a few months before we got there. I feel like Stephanie was like my "mentor". :-) She put a lot of time and energy in to help families coming to Simferopol after her. I'm SOO grateful she was willing to share all of the ins and outs of the region. And I can pretty accurately say she probably saved us hundreds of dollars in transportation costs by telling us how to ride the bus for $2/day instead of paying a driver $30/day. But really, all of that is minor compared to the transformation her boys have undergone since being home. Plus, Stephanie was so burdened for the children left behind at the orphanage that she, along with two other adoptive moms, started an ministry called "Project TLC". They are "dedicated to improving the life of disadvantaged children in Crimean communities and orphanages, serving their spiritual and physical needs with the love of Christ".
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If any of you are following my daughter Sarah's blog, you know that she LOVES a little boy very, very, very, very much. :-) She recently started a fundraiser called "Love for Little Logan" to help his family with their initial adoption expenses. She has made hairbands to sell and a friend has donated hair bows to help the family. Please click on over and check it out! http://matthew18vs14.blogspot.com/p/love-for-logan-fundraiser.html Yes, that is Logan you see plastered all over the background on her blog. :-) Some of those photos she took herself last summer! While you are there, feel free to grab her button too. She works tirelessly to help adopting families and those precious ones that are still waiting. I'm so very proud of her!
Lots of Hairbands to Sell for Logan!
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Tuesday, October 18, 2011
Please pray for Nathanael!!!
This precious little boy needs your prayers!!!
Nathanael has a life-threatening condition called hydorcephalus. If Nathanael would have been born in this country, he would have had surgery to place a shunt to drain the excess fluid on his brain. He most likely would have lived a fairly normal life. But...he was not born here. Many attempts were made from this side of the ocean to get him the life-saving surgery he needed, but these attempts were in vain as he was not "allowed" to have surgery.
His potential adoptive family sped through the dossier prep process to get their paperwork over to his country ASAP. They were then slowed down by the infamous "special needs list". Hydrocephalus wasn't on there. (Hoping to hear about the new list this week.) Now, his country is changing things (again) so they face yet another delay.
But today, his family found out his birth mother has been visiting him. She has already relinquished her rights, but has said she would contest his adoption. WHAT?!?! So, basically, she will not give him the treatment he needs and won't allow a family to adopt him to give him the surgery he SO desperately needs. He WILL die if he does not have surgery.
Ok, here's where you come in. PLEASE PRAY for the softening of his mother's heart to allow this adoption to happen!!! PLEASE PRAY for his family to be able to get over there ASAP!!! And finally, PLEASE PRAY for Nathanael's health...that he would hang on long enough for his family to get him home safely. Thank you so much. I believe God can and will save his life.
His family's blog is http://savenathaniel.blogspot.com/ if you want to stop by and leave them an encouraging note.
Nathanael has a life-threatening condition called hydorcephalus. If Nathanael would have been born in this country, he would have had surgery to place a shunt to drain the excess fluid on his brain. He most likely would have lived a fairly normal life. But...he was not born here. Many attempts were made from this side of the ocean to get him the life-saving surgery he needed, but these attempts were in vain as he was not "allowed" to have surgery.
His potential adoptive family sped through the dossier prep process to get their paperwork over to his country ASAP. They were then slowed down by the infamous "special needs list". Hydrocephalus wasn't on there. (Hoping to hear about the new list this week.) Now, his country is changing things (again) so they face yet another delay.
But today, his family found out his birth mother has been visiting him. She has already relinquished her rights, but has said she would contest his adoption. WHAT?!?! So, basically, she will not give him the treatment he needs and won't allow a family to adopt him to give him the surgery he SO desperately needs. He WILL die if he does not have surgery.
Ok, here's where you come in. PLEASE PRAY for the softening of his mother's heart to allow this adoption to happen!!! PLEASE PRAY for his family to be able to get over there ASAP!!! And finally, PLEASE PRAY for Nathanael's health...that he would hang on long enough for his family to get him home safely. Thank you so much. I believe God can and will save his life.
His family's blog is http://savenathaniel.blogspot.com/ if you want to stop by and leave them an encouraging note.
Monday, October 17, 2011
Facts about siblings
Ds Fact: A newly released study by Children's Hospital Boston reveals how children feel about their siblings with Down Syndrome.
The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older
(estimated response rate, 19 percent).
Of the siblings age 12 and older:
• 94 percent expressed feelings of pride about their sibling
• 7 percent felt embarrassed by their sibling
• 4 percent would “trade their sibling in” for another
• 88 percent said they felt they were better people because of their sibling with Down syndrome
Of siblings aged 9-11:
• 97 percent said they loved their sibling
• 90 percent felt their friends are comfortable around their sibling
My daughter, Sarah, had this to say on her recent blog post: (Please click over there to see what Carrington's big sister had to say too.)
Most of the time I forget that my brothers have Down Syndrome! It doesn't define them, and no they'll never "get over it", but I love them just the way they are! And honestly, if I had the choice, after knowing them, I would never change the fact they had DS! No, of course I wouldn't want them to spend as much time in the orphanage with out a family as they did, but because of them, I am a much better person then I was before we adopted them! I don't avoid people with Ds like I used to, now I got up and talk to them. My brothers have changed me forever to the better, and I am soo very grateful!! ♥
Sadly, I believe one of the biggest reasons parents site for terminating a pregnancy of a baby with Ds is how it will affect their other children. As you can see, that is so NOT the case. Please help me get the word out! That is also the same reason some people give for not adopting too. It is also the same "objections" that were given to us when we announced our adoptions. It just isn't true. (I had a moment to sit down and do this post while the "middles" were out playing and the "littles" were napping. :-) I'll try and ask the "middles" what their thoughts are and get back to you.)
Ds Blog: http://cornishadoptionjourney.blogspot.com/ Meredith and Mike are AMAZING people and parents! Pat and I had the pleasure of meeting both of them in Kiev back in Dec and then I was able to meet up with Meredith again after Christmas when we both had our new kiddos with us. Mike and Meredith have adopted 5 children, 4 from Ukraine (2 of which were from Jonathan's orphanage) and one domestically. I love Meredith's blog as she often shares very helpful hints and tips on how she manages life with 6 special needs children and obviously a large family. I especially loved her post about the iPad apps she uses for her kids. Maybe one of these days I can put that to use. LOL
The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older
(estimated response rate, 19 percent).
Of the siblings age 12 and older:
• 94 percent expressed feelings of pride about their sibling
• 7 percent felt embarrassed by their sibling
• 4 percent would “trade their sibling in” for another
• 88 percent said they felt they were better people because of their sibling with Down syndrome
Of siblings aged 9-11:
• 97 percent said they loved their sibling
• 90 percent felt their friends are comfortable around their sibling
My daughter, Sarah, had this to say on her recent blog post: (Please click over there to see what Carrington's big sister had to say too.)
Most of the time I forget that my brothers have Down Syndrome! It doesn't define them, and no they'll never "get over it", but I love them just the way they are! And honestly, if I had the choice, after knowing them, I would never change the fact they had DS! No, of course I wouldn't want them to spend as much time in the orphanage with out a family as they did, but because of them, I am a much better person then I was before we adopted them! I don't avoid people with Ds like I used to, now I got up and talk to them. My brothers have changed me forever to the better, and I am soo very grateful!! ♥
Sadly, I believe one of the biggest reasons parents site for terminating a pregnancy of a baby with Ds is how it will affect their other children. As you can see, that is so NOT the case. Please help me get the word out! That is also the same reason some people give for not adopting too. It is also the same "objections" that were given to us when we announced our adoptions. It just isn't true. (I had a moment to sit down and do this post while the "middles" were out playing and the "littles" were napping. :-) I'll try and ask the "middles" what their thoughts are and get back to you.)
Ds Blog: http://cornishadoptionjourney.blogspot.com/ Meredith and Mike are AMAZING people and parents! Pat and I had the pleasure of meeting both of them in Kiev back in Dec and then I was able to meet up with Meredith again after Christmas when we both had our new kiddos with us. Mike and Meredith have adopted 5 children, 4 from Ukraine (2 of which were from Jonathan's orphanage) and one domestically. I love Meredith's blog as she often shares very helpful hints and tips on how she manages life with 6 special needs children and obviously a large family. I especially loved her post about the iPad apps she uses for her kids. Maybe one of these days I can put that to use. LOL
Saturday, October 15, 2011
You have got to see this!
Ds blog: A family adopting a precious girl w/ Ds, Carlene, is having a fundraiser right now. PLEASE go check it out! http://operationorphannomore.blogspot.com/2011/10/when-god-wraps-his-arms-around-you.html You have got to see these photos!!! I sat last night looking at all of them, bawling my eyes out. So many beautiful touching photos with babies, soldiers, families, children and about Luke 2. Wow!
Visit the photographer's website HERE and she will donate 40% of the sales to help bring Carlene home! But only through Wednesday, Oct. 19th. Just put "For Carlene" in the comments section. I can't wait to have some these hanging in our home. Thanks for helping!
Flashbacks and Regression
Ds Fact/tidbit: Very tragically, the termination rate of pregnancies with a prenatal diagnosis of Down syndrome is about 90%. Interestingly enough, when a child is listed for adoption domestically (w/in the US), often there are 30+ families on the list or interested in adopting that child. Ironic it, isn't it?
Ds Blog: http://the-scenic-route-momto6kids.blogspot.com/ This blog chronicles the adoption journeys of my friend, Debbie, and her husband, Jeff as they have given FOUR children w/ Ds a forever home! I'm in awe of how big their hearts are. Pat and I were privileged to meet Jeff in Kiev last December as we were both just starting out our first adoption journey. (We also met the Hansons at the same time. It was funny b/c all three men that night had red/auburn hair. :-)) They adopted 2 cute boys from Jonathan's orphanage in Dec (they have changed A LOT!) and just brought home 2 darling girls about one month ago. They are such a wonderful, precious family. Hop on over and say hi!
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What goes through an adopted child's mind when he is placed in a smallish room (i.e. church nursery in an old church that is somewhat institutional looking) with toys and about 5 or 6 other children (mostly boys) about his same size??? (Remember Elijah was in a grouppa with about 5 or 6 other boys...) My poor baby...I'm not sure what exactly went through his mind, but I saw the behaviors that happened. He started throwing toys, pinching, hitting, etc. Frankly, it was awful. To make matters worse, it was our first meeting of the year of our home schooling group, and I was in the nursery with my three little ones, along with two moms that were new to the group that I had only met once before. I felt absolutely terrible, but they were so very gracious and understanding. I'm deeply grateful for that. I realized that Elijah has not been with this many little children at one time since he was last at the orphanage almost 10 months ago. Break my heart. His behavior was very similar to how he acted when he first got home towards Rachel. (The thwaping on the top of the head was a dead give-away. I haven't seen him do that in a LONG time.) I believe he feels like he needs to establish a "pecking order". So very sad. I want him to have friends and play with the other kids, and I don't want the other kids to be afraid of him.
You can take the child out of the orphanage, but you can't take the orphanage out of the child (at least not for a long time). :-(
Elijah has come SOOO far in 10 months and I am SO very grateful for that. But days like today, I'm reminded of where he spent his first 3 years of his life. I also don't want to use that as an excuse for his behavior either. We are working on it. "Hands to yourself." "Nice touch only." He's a smart kid! We will get there!
What am I going to do in two weeks for our next gathering? Bring a portable DVD player and put in "Baby Signing Times". Hey, don't fault me! LOL It will be something familiar for him and hopefully it will keep him calmed down a bit. I will also pray about it, try to talk to him about it ahead of time, and try to keep my stress level low too. I'll keep you posted!
Ds Blog: http://the-scenic-route-momto6kids.blogspot.com/ This blog chronicles the adoption journeys of my friend, Debbie, and her husband, Jeff as they have given FOUR children w/ Ds a forever home! I'm in awe of how big their hearts are. Pat and I were privileged to meet Jeff in Kiev last December as we were both just starting out our first adoption journey. (We also met the Hansons at the same time. It was funny b/c all three men that night had red/auburn hair. :-)) They adopted 2 cute boys from Jonathan's orphanage in Dec (they have changed A LOT!) and just brought home 2 darling girls about one month ago. They are such a wonderful, precious family. Hop on over and say hi!
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What goes through an adopted child's mind when he is placed in a smallish room (i.e. church nursery in an old church that is somewhat institutional looking) with toys and about 5 or 6 other children (mostly boys) about his same size??? (Remember Elijah was in a grouppa with about 5 or 6 other boys...) My poor baby...I'm not sure what exactly went through his mind, but I saw the behaviors that happened. He started throwing toys, pinching, hitting, etc. Frankly, it was awful. To make matters worse, it was our first meeting of the year of our home schooling group, and I was in the nursery with my three little ones, along with two moms that were new to the group that I had only met once before. I felt absolutely terrible, but they were so very gracious and understanding. I'm deeply grateful for that. I realized that Elijah has not been with this many little children at one time since he was last at the orphanage almost 10 months ago. Break my heart. His behavior was very similar to how he acted when he first got home towards Rachel. (The thwaping on the top of the head was a dead give-away. I haven't seen him do that in a LONG time.) I believe he feels like he needs to establish a "pecking order". So very sad. I want him to have friends and play with the other kids, and I don't want the other kids to be afraid of him.
You can take the child out of the orphanage, but you can't take the orphanage out of the child (at least not for a long time). :-(
Elijah has come SOOO far in 10 months and I am SO very grateful for that. But days like today, I'm reminded of where he spent his first 3 years of his life. I also don't want to use that as an excuse for his behavior either. We are working on it. "Hands to yourself." "Nice touch only." He's a smart kid! We will get there!
What am I going to do in two weeks for our next gathering? Bring a portable DVD player and put in "Baby Signing Times". Hey, don't fault me! LOL It will be something familiar for him and hopefully it will keep him calmed down a bit. I will also pray about it, try to talk to him about it ahead of time, and try to keep my stress level low too. I'll keep you posted!
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