Down Syndrome Awareness Walk - One day left to pre-register

Hope you local folks will consider joining us! October 4th is the date, but if you want to be guaranteed a t-shirt, please preregister by Fri, Sept 26th at midnight.

You can register for our KUTE 'KRAINIANS team HERE.  Details below. Hope to see you there!

(I'm shocked how much Elijah has grown in the past 2 years. Check out the 2012 Walk blog post here.)

There is 1 day left to pre-register online! Pre-Registration will be accepted until 11:59PM (CST) on Friday, September 26th.  Onsite registration will be accepted at the walk but t-shirts are only guaranteed to those who pre-register. Pre-registration is $7 per walker which includes a t-shirt and all pre-walk activities.  Lunch is an additional $2. Onsite (day of walk) registration is $8 per walker, includes all pre-walk activities and t-shirts will not be guaranteed.  They are first come first serve.  Lunch is an additional $2. Register Online Now! The walk is only 8 days away!! So far, there are 1013 walkers and 59 teams registered!! $28,000 raised online so far! (93% of our online fundraising goal!) Walk Day Details Saturday, October 4th at Riverside Park in Neenah   Registration and Check-In starts at 10:30am and ends at 12:30pm 10:30-1:00 Lunch Served   10:30-2:00 Pre-Walk Activities Food, DJ, 4-person Trampoline Bungie Jumping, Petting Zoo, Craft Station by The Learning Shop, Bounce House, Raffles, Resource Tent, Clowns, Face Painting, Magician and much more!   1:45 Pre-Walk Rally and Awards Ceremony Led by Kris Schuller of WFRV Channel 5   2:00 Walk Begins (Approximately 1 mile stroll through the park and along Lake Winnebago)   2:30 Raffle winners posted and announced View Details for Events at www.dsawfoxcities.org

Celebrating WDSD!

Last night we went to Monkey Joe's (bouncy house place) to celebrate World Down Syndrome Day with our local Down syndrome support group.

We all had fun, and even took some pictures! :)

Miss Grace wasn't too sure about the loud, crazy, and brightly colored place at first, but our sensory seeker quickly figured out how much fun she could have.

Elijah remembered going last year and had no fear!

Yeah, she really was this red. Playing too hard! lol

Anna and Jonathan

I (Sarah) was looking at my blog the other day and realized that the only picture I have of Grace and myself was from the orphanage and she was bald. So we took a new one. :)

Our Monkey Man is doing pretty well recovering from his surgery (a week today!). He has been drinking well, and was doing really well pain wise till the scabs came off. The past few days have been a little rough, but we'll get there.

"You mean I allowed to dive over this thing and land on my head??"

This is how all pictures of Grace going down the slide turned out. She LOVED it, and would not stop laughing, but always turned to the side coming down. lol

3-21 - Happy World Down Syndrome Day!

Today is World Down Syndrome Day!  3-21 for 3 copies of the 21st chromosome.

We love our three precious children with Down syndrome. We love you Grace, Elijah and Jonathan and are so proud of you!

Check out this wonderful video from IDSC celebrating Down syndrome!





And with my daughter's permission, I'm sharing her post from today. She's an amazing young lady and writer. I'm so proud of her! I couldn't agree with her more.  Please watch the video she posted as well.

What today is really about.

Today is World Down Syndrome Day!

March 21st, or 3/21, standing for 3 of the 21st chromosome.

I have three siblings with Down syndrome, and many other little friends with Down syndrome, all who I love to pieces.

But here's the thing.

I'm not here to tell you about how special people with Down syndrome are, and why we should celebrate them today.

Because I don't think today is about celebrating them.

I think today is about making a point of pointing out to people that people with Down syndrome should be accepted like everyone else.

When I see one of my siblings or one of my other little friends with Down syndrome, I forget in the every day that they have Down syndrome.

When I look at Elijah, I see Elijah, not my-brother-with-Down-syndrome. It's part of who he is, not something that makes him different than everyone else.

Obviously, there are doctor appointments, therapies, and challenges that come up because of their diagnosis, but even then it doesn't scream Down syndrome at me.

I don't think it's much different than when I see someone with blonde hair. I notice it, but not every time I look at them, and it's not what I think about when I look at them.

I'm not trying to take away from the fact they have blonde hair by not pointing it out to them, and I'm not trying to take away the fact someone has Down syndrome by not pointing it out to them.

Today is about acceptance. Accepting people with special needs for who they are, and not treating them different than anyone else.

I'm not saying not to be more patient and understanding when they don't behave perfectly, and I know with some things you have to take their diagnosis into account.

But, you don't have to constantly thinking about the fact they have Down syndrome, and treating them like it.

When we are out and about, yes, I still notice if there is an adult across the restaurant who has Down syndrome. But do I need to to go over with one of my siblings and introduce myself? Absolutely not. Sure, I'll smile at them if they smile at me as they walk by, or I'll say thank you and smile at them if they hold the door open for me. But I won't do anything more than I would do anyone else. I don't introduce myself and my sibling with Down syndrome to point out they are both the same and different than everyone else.

Acceptance.

If you see a woman who is a complete stranger with no hair, do you go up to them and tell them that your sister-in-law also had breast cancer? Or smile sympathetically at them and stare at their head? Why should it be any different with someone with Down syndrome?

Be patient, listen carefully if they try to talk to you, but don't act like they are different.

Because they are as different from people without Down syndrome as you are from me.

Do you the same face and body type as me? Nope, and they don't have the same one as you. You accept me for who I am, so accept them as who they are.

Happy World Down Syndrome Day!

Sleep Study Update and Round 2 Tonight!

Sorry for the delayed update, but Elijah's sleep study went very well - amazingly well - miraculously well!  Thank you Jesus!  And thank you all for praying! He only fussed a bit while they stuck all the wires on his head.  We put the no-nos (arm boards) on his arms right away so he didn't think he could start yanking off playing with the wires. Just 2 things really bothered him. It wasn't the canula up his nose or even his mesh "hat" holding all the wires.  It was his hospital wristband and the thing on his toe to measure his oxygen levels (I think).  I took his wristband off. I figured it was the least I could do. :) I'm not surprised about his toe either. He HATES, I mean HATES to have his toe nails trimmed. Very sensitive feet. Anyway, as he was falling asleep, I took his no-nos off and he was asleep in 5 minutes. I was shocked!! He did GREAT! He didn't even fuss at the finger poke the next morning. Frankly, I was shocked - that was a good thing!

He set the bar pretty high for his little brother. Jonathan is much, much more sensory "defensive" than his brother. I joked with someone I was going to have to pray and fast for a long time before Jonathan's test for it to go as well.  J's was scheduled for October 4th in Milwaukee, but after being at the New Berlin sleep lab, I wanted to go back there. It was very nice w/ a private bathroom.(Plus it was the night before our DS walk.) So, I rescheduled it for Oct. 30th and put him on the cancellation list.

They called this AM with a cancellation for TONIGHT! So, Jonathan and I are off this afternoon for sleep study #2.  Please pray his nose stays clear. (Both boys have sniffley noses but Jonathan's was fine this morning when he woke up.) Please pray he tolerates this well and can fall asleep. I would keep the no-nos on him but he always always falls asleep with his right two fingers in his mouth. I'm not sure how this is going to work. Prayers I can sleep too would be appreciated. 

Thanks so much everyone! I appreciate you all so much!

(Here's the link I posted last time about sleep studies in case you missed it. http://www.sheknows.com/parenting/articles/986521/sleep-studies-for-children-with-down-syndrome)

Sleep study x 2 - Comin' right up!

Yep, both Elijah and Jonathan will be having the notorious sleep studies.  I'm heading off in a few minutes for Elijah's and Jonathan's will be in a couple weeks. I'd appreciate prayers tonight for all to go smoothly for both of us. :)  I'll try to update tomorrow, which happens to be Elijah's 6th birthday! Fun way to start a birthday I'd say.

Sorry it's been so long since I've update here. We've been too busy livin' life to blog about it I guess. I'll try to update more soon!

Thanks everyone!

World Down Syndrome Day

World Down Syndrome Day is tomorrow - March 21st -- 3-21 -- for 3 copies of the 21st chromosome. We will be celebrating with our local DSAW group at Monkey Joe's.  The kids are very excited!

In honor of this special day, I invite you to watch the following video produced by IDSC. It has a GREAT message!

A special song for parents of special needs kids

This is a beautiful song! Enjoy!

"Your Child' by Jennifer Shaw - A song celebrating every life

Please pray for this family...

I can't even imagine... :-(

http://www.abcactionnews.com//dpp/news/region_south_hillsborough/riverview/body-of-missing-10-year-old-girl-found-in-pond-near-riverview-school

Hearts

I'm shamelessly copying this from Sarah's post the other day. She's a MUCH better blogger than me! Here is a little bit of info on heart defects found in children with Down syndrome. I had never seen this before, so it was interesting to me.  Please check out the rest of Sarah's post too! SO many children with heart problems need families!!!!!!

Ds Fact - (source) The overall incidence of congenital heart disease in the general population is 0.8 percent. The incidence of congenital heart disease in children with Down syndrome is up to 50 percent.

The types of heart defects in children with Down syndrome can be broken down into three broad categories:

1. Atrioventricular septal defects 
2. Ventricular septal defect (VSD), atrial septal defect, or patent ductus arteriosus
3. Other complex heart disease

Atrioventricular septal defects (AV Canal) is greatly over-represented in these children, making up approximately 60 percent of the congenital heart disease found in Trisomy 21. For comparison, AV canals account for only 2.9 percent of the congenital heart defects in the general population.

Ventricular septal defects, atrial septal defects, and patent ductus arteriosus comprise another 20 percent of the congenital heart disease associated with Down syndrome, although these defects are much more common in the general population compared to AV canals.

Other complex congenital heart diseases including Tetralogy of Fallot andhypoplastic left heart syndrome comprise the rest of the heart disease seen in Trisomy 21.

In addition to the heart defects associated with Down Syndrome, isolated elevated blood pressure in the lungs (pulmonary hypertension) is seen with higher frequency in patients with Down syndrome. This high pressure may be related to malformation of the lung tissue, although the exact cause is not known.

The higher pressures may limit the amount of blood flow to the lungs and therefore decrease the likelihood of symptoms of congestive heart failure seen in babies with complete AV canals or large ventricular septal defects.

However, since the pulmonary hypertension can become irreversible, particularly if these large holes are not surgically corrected by a year of age, children with Down syndrome and AV canals or large ventricular septal defects are often referred for surgery earlier than a non-Down syndrome child with the same heart defect.

If the baby does have evidence of high pressures in the lungs, it may complicate postoperative management and hence prolong the recovery time.

Triple Trouble and DS Walk Saturday

The 3rd Annual Down Syndrome Awareness Walk for the Fox Cities will be held this Saturday!  We are very excited about it (even though the weather forecast is crummy). The kids have had a blast the past 2 years. And of course, it is a wonderful way to raise awareness for Down syndrome. If you are local, we would love to have you join us. you can click HERE to register. Find our team called "Triple Trouble". If you can't make it but would like to support our awesome local Ds support group, please see the donation box at the top of my sidebar. Thanks so much for your support! Preregistration closes at noon on Wed to be guaranteed a t-shirt. Registration is available at the walk.

(You can see photos from last year's walk here.)

"Triple Trouble"...why did we name our team "Triple Trouble"?

This might give you a hint...

(By the way, these were the best out of 110 photos!!! Can you tell on the last 2 photos that I had gotten the iPad out? It got the big boys' attention, but then Elijah got VERY mad he couldn't have it and we were done...)

Yep, it's Carter, Jonathan and Elijah! (We were going to name our team the "Cranky 'krainians" but thought better of it...for this year. :-)

SPREAD THE WORD TO END THE WORD

(I copied this from Sarah's blog. :-) She's a MUCH better blogger than me!) I also posted my personal thoughts on this subject HERE.

Today is the day to raise awareness about the R-word (retard. retarded). To put an end to the use of it. When you use the word, it hurts those with special needs (such as Down syndrome, like my brothers have), their families, and their loved ones.

Why does it hurt? The R-word hurts because it is exclusive. It’s offensive. It’s derogatory. The R-word is hate speech. (Taken from here, click to read more about the history of the R-word.)

Today, I'm going to ask you to PLEASE stop using the R-word. 

You have no idea who you are hurting by using it, and it's socially unacceptable. You can sign the petition here (or click on the button below) to stop using the word. Thank you!!

Let's replace the R-word with a new R-word: RESPECT!

"You're allowed to be humiliating, degrading and hurtful. I'm allowed to petition you to at least recognize what you say and be aware of the option you have to stop." Tim Shriver

Also please take some time to watch this awesome video! :)

The 2nd out of over 3000 (Jonathan update)

The good news from today is that Jonathan did really, really well. His procedure was almost 3 hours late, but he hardly fussed at all due to his empty stomach. He (we) napped for a bit and then they gave him some Versed, so he was a bit out of it by the time they took him to the OR.  He came out of the anesthesia well too. Thanks for praying!

Now, the title of this post...when we saw the ENT doctor last month, we were discussing J's small ear canals. Dr P said he has placed over 3000 ear tubes and only ONE time was he not able to get the tubes in due the child's small ear canals. This child also had Ds. Well, J's right ear canal was too small. It was just not formed properly. The tube was 1 mm, but so was his canal. So, Dr P was able to get most of the sticky fluid out of the eardrum, but most likely it will return. There is a chance that as he grows, it will widen enough to allow for a tube insertion. However, he did get the tube in the left eardrum (also full of sticky fluid), so that's good news! The other good news is the audiologist did not find any real hearing loss. If his ears are fluid and wax free, he should be able to hear just fine! Praise God! Both boys go back in about 4 weeks for a check-up.

It was a long day (didn't get home until about 4:30pm), but overall a pretty good one with some helpful answers to Jonathan's hearing situation. Thanks again to all those who prayed. Jonathan is a real champ!

Ear tube surgery scheduled 2x - check!

Yep, both Jonathan and Elijah need to have tubes placed in their ears to help drain any fluid that may be built up behind their eardrums. Elijah's will be a very quick procedure on Dec. 14th, but Jonathan's will take a bit longer on the 21st as they want to do a sedated ABR hearing test (which stands for auditory brainstem response). This test can take up to 2 hours.

The ENT doctor did not see any signs of infection in either of the boys' ears, so we are being aggressive with the tubes and that's fine by me. They need every chance they can get to help develop normal speech, and hearing is an important part of that. Yesterday, the audiologist did a very quick tympanogram (measurement of the energy passing through the middle ear) on Elijah, and both ears were "flat", unlike his test a couple of weeks ago where his left ear showed some movement. (This might explain his increase in behavior problems as of late? We'll see.)

This procedure is VERY common in kids with Down syndrome. The doctor explained to me that usually their ear canals are smaller and also shaped differently. This allows fluid to build up in the eardrum even without an infection. See, I'm learning all sorts of new things these days!

Speaking of which, (admitting my lack of knowledge here) I never knew where the "tubes" went in the ear. I had heard about it of course, but never really knew. Click HERE and go to the 11th slide on the slide show. This photo shows the tube in the eardrum. The doctor showed me an actual "tube" in the office and it is of course super tiny. It looks like a microscopic spool. They operate under a microscope. Who knew? :-)

Bottom line - Elijah and Jonathan are getting a GREAT Christmas gift this year! The GIFT OF HEARING! (Lord willing the tubes will return their hearing to normal.)

Oh, one last thing I don't think I posted about. Elijah passed his vision test too. He's a tad far-sighted, but not enough for the doctor to treat him. We'll follow up in a year.

A Day of a Few Firsts

Just a quick note about some of the fun "firsts" we experienced today!

Rebekah lost her FIRST TOOTH today!!! How fun! Go Rebekah! You are getting so grown up!

Jonathan sitting up in his crib for the FIRST time!

Now, I have to explain this. Because J spent the first year of his life laying down w/ zero stimulation, he has not been able to transition from lying on his tummy to sitting...until Sunday night. I put him on his knees and hands, and he pushed and pushed until he could sit up! Way to go Jonathan! He even did his new trick for the PT on Monday AM. But today...my little man can get from flat on his tummy to sitting up - and quickly too! YAY!!! He's getting so much stronger.
So...nap this AM. He thought it was fun to sit up and NOT sleep. :-) Thankfully, he can go back down to his tummy when he wants too. He'll sleep when he's tired enough I guess...just about time to lower the mattress before he surprises me by pulling up and standing. Now, that will be a celebration!

This is a good example though of celebrating all of those little milestones that my chromosomally enhanced boys reach. I don't remember even noticing when my other kids reached this milestone. They will reach those milestones, just takes them a bit longer. :-)

And our 3rd FIRST for the day was going grocery shopping....with ALL SEVEN CHILDREN!!  Yes, this was the FIRST time since Jonathan has been home with all of them. I don't think I ever went with all 6 after Elijah came home either. I must say, having a daughter old enough to babysit ROCKS!  But anyway, today was just a quick stop at the small store here in our small town. The kids did GREAT!!!! We had 2 carts and E & J were both sitting up front. Rachel sat in the big part of one of the carts and away we went. We were going to count comments (much like we count comments about the stroller), but we didn't get any. Imagine that! Sarah said we got lots of looks though and people doing the little "head nodding" thing.  The "head nodding" is when people are silently how many kids there are. LOL Love it! (To be honest I do the same thing when I see a big family. Love big families! :-))

Speaking of which, here's a photo from Monday just for fun....Ok, do the head nodding thing and see if there is anyone missing!

Look how nice and big and straight Jonathan is sitting. He's come SO far in  4 1/2 months. Hard to believe he still had head control issues in June when we met him. 

The Last Day...

Today is the last day to enter the iPad2 giveaway to help bring Teagan and Kelten home! Click HERE to donate and read the details. Just $10 gets you an entry. Every single dollar helps the incredible Burman family bring home their boys.  Teagan and Kelten are in an orphanage in EE. But many of the children in this orphanage are VERY tiny and VERY malnourished. As you see below, Kelten is TWELVE YEARS OLD and is an infant walker!!! Teagan may very well be in the same shape as Carrington was when she came home.  (As you may remember, the Burmans adopted Carrington from Elijah's orphanage earlier this year. She was literally hours from dying when they got home.)

One of the precious little ones has just come home from this orphanage. Little Katie weighed less than 11 pounds and is 29" inches long. Now given that my children were about 7 1/2 pounds and 20" long when they were born, you will realize that Katie is long and very thin (by baby standards). What you wouldn't know by looking at those stats is that she is NINE YEARS OLD. Yes, she is the same age as my 4th grader, Anna. I was looking at the photos on her blog and just started weeping. I was holding Elijah at the same time and just keep thinking that could have been him...

Folks, Carrington, Katie, Kelten and Teagan are not the only ones in this state of just existing (they are not even in the same country)...locked away from society. Why??? Just because they have Down syndrome. That's it. This is why these children, Teagan and Kelten need to get home ASAP. This is why it is SO important to support adoptive families with your prayers AND your financial gifts. Please don't let money stand in the way of Teagan and Kelten coming home to their mommy and daddy and a whole lot of siblings that are going to love them to pieces. :-)

Oh, that reminds me of another thing I wanted to say about large families adopting (again). But I guess I'll save that for another day. It's one of those posts I've had swirling in my head since we got home with Jonathan. Sometime soon I hope I can get that post out of my head and onto the screen.

Please pray for the Burmans to pass through USCIS and to have all of the funds they need to travel to get their boys.

Teagan Chance         Kelten Drake

 

4 years old                12 years old

Last Day - More Alike Than Different

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...

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.

It is hardly even noticeable here.

When I first undressed and bathed Elijah, I had no idea what was causing it and was afraid he had an enlarged heart or something! :-) And it was MUCH more noticeable before when he was so thin. I never notice it now because of the weight he as gained, but also because it is just a tiny part of who he is. I LOVE THAT BOY!!! (I debated on whether or not to share this, but I thought it might relieve a future adoptive mom from freakin' out a little bit. :-))

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!

Elijah's right hand

Both together

 Ds Blog: http://rachelsorphanblog.blogspot.com/  Rachel is Sarah's best friend and is currently over in EE with Jake and Ashley!!! She is loving it!!! She has a HUGE heart for special needs orphans as you can see from her blog background and advocates heavily for them. I'm loving following her version of the trip. She loves the Milka chocolate just like I do! :-)

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!!!

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!

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