To think....when Jonathan came home in July, he still had some head control problems. He couldn't sit up on his own. He couldn't push up on all fours, or even push his tummy off the ground. He would NOT bear any weight on his legs.AT.ALL. They were complete jello. HERE is a post shortly after we met him. Oh, and he's gained like 6 pounds too! :-)
This, my friends, is the picture of what love can do for a child (and some PT too). I fully believe that if he were still in that crummy old orphange, he would still be spending his days laying flat on his back in a hard wooden prison playpen staring at the ceiling - or worse...
This, my friends, is (one of the reasons) why we chose to be obedient to the Lord's calling to adopt Jonathan to be our 7th child, our 2nd child with special needs. Most people thought we were (are) crazy. So be it. An orphanage is NO place for ANY child. Please pray about what your place is in helping with the orphan crisis, especially those with special needs.
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!
Update: Elijah's ear tube surgery last Wednesday went very well. He was in and out of OR in less than 15 minutes, woke up fine, and we were on our way home by 8:30am. The next day he seemed a little less frustrated, so I'll take that as a good sign! He'll have his hearing tested again at the 4-week post-op check up.
Prayer Request for Jonathan: Jonathan will have his ear tubes placed at about 10:30 tomorrow (Wed) AM. The ear tube part of the procedure should be quick, but they are conducting a sedated hearing test. This may take up to 2 hours. Please pray for him to handle the anesthesia ok. He did get a clearance letter from the cardiologist, but a little extra prayer never hurt. :-) Also, he won't be able to have a bottle after 4:30AM. I have a feeling he won't be a happy camper...so prayers for contentment and peace (for both of us) would be appreciated too.
One Year Ago Today: "Auntie Debbie" FINALLY made it to Elijah's city after a nightmarish trip to Ukraine through snowstorms across Europe in which she "visited" France, Italy, Germany and finally Ukraine, including a night in the Milan airport, as well as a night on the lovely Ukrainian train. I was never so glad to hear someone's voice when she called from Max's phone. But whatta friend, huh? I'm SOO grateful for Max as well. He gave up a few days of his very, very busy schedule to pick up Debbie in Kiev and then guided and protected her on the 15-hr train ride. I chronicled her journey a bit HERE, HERE, HERE (which also includes an update about sweet Shea. I'll tell ya, there is nothing like shouting about a child that you've met and then seeing a family commit to him while I was still in country! What a joy!!!) and HERE. I'm forever grateful to Debbie for willingly giving up her Christmas with her family to spend it with me and Elijah. I can't even begin to tell you how much more difficult it would have been to be away by myself over Christmas. As I'm hearing Christmas songs this year and finding myself getting weepy, I'm realizing those emotions from last year are still pretty fresh. Having Debbie with me on the way home was a HUGE help too of course. After coming home alone with Jonathan, it made me realize how much more difficult the trip home with Elijah could have been.
So, thank you, Debbie, aka "Auntie Crackers", for giving of your time, friendship and all that you gave up physically, mentally, and emotionally to travel half way across the world to be with Elijah and me. You and your family will always have a very special place in my heart. :-) Debbie did a guest post for me last year while in country. You can read it HERE. Maybe I'll ask her to do a follow-up post in the next couple of weeks...the Lord has done AMAZING AMAZINGAMAZING things in her family over the past year!!!
(Don't worry, I won't do this all month. :-) Just for the really important days.) Sarah is doing a "Days of Elijah" series all about her little brother on her blog this month. Hop on over and check it out. Also check out her new blog design. I love it! She is so talented.
Ok, one year ago today, we met Elijah's parents! I posted about it HERE and HERE (this 2nd post has a video of Elijah walking with his "toddler stomp"). I think this was the most emotional part of the entire trip. We first found out that Elijah's parents had been visiting him when we met with the director of the orphanage that first crazy day. I was very surprised as everything we had heard up to this point was how "all" parents abandon babies born with special needs at birth and walk away - forever. While this is the case for most children (like Jonathan :-( ), but it was NOT the case for Elijah. Elijah's parents, Mama Tanya and Papa Igor LOVE Elijah very, very much. They visited them often at the orphanage, even though their home town was 30+ miles away. Anyway, our meeting was VERY emotional as you can imagine. I still can't imagine the depths of their pain and loss, but I am SOOO thankful they gave him LIFE!!! I love being able to stay in contact with them and I love that Elijah will grow up knowing he has 2 sets of parents that love him very, very much.
I really do think their presence in his life benefited Elijah greatly. I don't know how the orphanage decided which kids with Ds went into which "grouppa" but Elijah was in a fairly good grouppa. Maybe his parents played a part in that. I don't know. Also, Elijah came home with VERY few "institutional" behaviors. He has never rocked himself to sleep like so many kids do. Besides the thwapping Rachel on the head the first few weeks (and that one time at home school group), the behaviors have been pretty minimal. He has also had minimal sensory issues, was able to feed himself, and has practically zero "stimming" behaviors. I credit his parents, the Lord's mercy and grace, and his prayer warrior family that had been lifting him up in prayer from the very beginning for 3+ years. Your prayers were answered Celia! Thank you SO much!!!
(However, I just have to add this so you don't think life is all roses here (sharing my heart here)...Elijah has some difficult behaviors, especially lately. Some meals (usually breakfast) are a battle some days. He definitely has a need to be in control - can't blame him. He was never in control of anything before, but it still needs to be addressed. And thanks to my Ds mentor for this tip :-), Michelle whom we visited yesterday, I think his thought processes are ahead of his expressive language and it is frustrating him. For example, yesterday at Michelle's, I told him to come out of playing in her vertical blinds. He didn't listen, so I removed him from the blinds. He wanted to return to them, so I held him back. I can't remember that exact order, but it involved trying to hit me, trying to take my hand to his mouth to bite it, and then trying to pinch my cheek. Sigh...Michelle learned this summer that every behavior is communication. Definitely food for thought. How could I have handled this differently? Probably getting down at his level, getting his attention, telling/signing "all done", and redirecting him to a different place to play. This boy is teaching me SO much! Of course, this behavior is not acceptable and I'm not condoning it or making excuses, but some things I can change too to help him understand and communicate. Was this a control issue? Probably. Was he frustrated? Most definitely. All this to say I believe most of his behavior problems right now are more related to his age and Ds than post-institutional behaviors. I did mention that he can say "NO" now, right??? :-) I just this morning I saw a link to a free webinar on Ds behavior. I SOO have to watch it. I can post the link if anyone is interested.)
We are so incredibly blessed to have Tanya and Igor in our lives. I'm looking forward to a life-long relationship with them. I have been especially touched by the gifts Tanya has given us. Too many have been given to name, but these two stick out to me the most. I especially appreciate the hand-made items. Thank you Tanya!
Hand knit sweater vest he wore on Gotcha Day
And this BEAUTIFUL hand-knit sweater for his 4th birthday! I know it will wrap him in warmth and love this winter when the temperatures dip well below freezing.
You can read the posts about that meeting HERE and HERE if you like.
I remember how incredibly light he was when I held him. I remember how quick he was to embrace me. I remember his smell too. :-( (I was so happy to finally give him a bath after Gotcha Day.) I remember recognizing that BENCH when we first walked in. I remember how all the emotions just came flooding - and lots of tears too. I remember how surprised we were to see him walking - doing that "toddler stomp" - and how proud the nannies were of him for walking (he was the only one in the grouppa walking.) I remember falling in love! :-)
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.
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.
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.
Jonathan had his hearing test on Monday afternoon. Our unscientific test with the pot lids was pretty accurate. Neither of his eardrums seem to be working very well - if at all. I do believe he can hear something, but not much. The past few weeks he has really started to babble a lot more, so that's a good sign. So, he will see the ENT doc next week for a medical evaluation. He has super tiny ear canals (pretty common in kids w/ Ds) that were pretty filled with wax. So, please pray with me that a good cleaning (probably will have to be cleaned fairly regular) and tubes to drain any fluid behind his ear drums will take care of his hearing problems. Thanks!
Ok, on to Elijah whose test was this afternoon. I didn't have any concerns about Elijah's hearing. His speech seems to be developing well and he usually hears all that we say to him (minus "selective hearing" :-)). A hearing check was on the list, and something I should have done months ago. Well, his LEFT ear works just fine. His RIGHT one, not so much. :-( He definitely favors his left ear when she tested his side-to-side hearing. She did say she saw some wax in his right ear as well. So....we have yet another appt with the ENT doc to get it checked out. We tried to combine both boys appts but we couldn't. So, we left J's appt for next week (right after Elijah's eye appt) and Elijah's will be the week after Thanksgiving. Thinking about it, sometimes when we ask Elijah to come back from standing too close to the TV, he has his left ear turned towards it. Not always, but sometimes. That probably explains why he ignores us when he is standing like that! :-) He hasn't had any ear infections since we got home. We had his orphanage medical records translated when we got home, so I'll have to ask Dr T if any were recorded.
So, that's the scoop from here. I've been pretty busy with helping Pat "process" chickens and canning spaghetti sauce from tomato puree we had in the freezer from last fall. We have more meat coming this week so the tomatoes needed to get out of the freezer.
God's Blessings to all of you! Thanks for reading.
Happy Veteran's Day! Thank you from the bottom of my heart for all of you have served this country and have sacrificed so much to protect our precious freedoms!!! We are SO blessed to live in this country!
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I love the date today! I'm going to schedule this post to autopost at 11:11pm tonight. We'll see if it works! :-)
I'm not being superstitious. It's just fun to write and say.
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Today, we had our readoption hearing for Jonathan at the county courthouse. (The post about Elijah's readoption is HERE.) It really is just a formality so we can get a "Certificate of Birth Facts" from the State of WI, the equivalent to a regular birth certificate for a child born here. He will need this if ever wants to apply for a passport, plus it covers us in case his original Ukrainian birth certificate is ever lost. Anyway, the only thing the judge asked us today was if we had any questions and if we wanted a picture. LOL Sarah and I both forgot our cameras, so we used Pat's phone. If we figure out how to get the photo off there (and if Isaac will stop playing Angry Birds on it), I'll post it here.
So, Jonathan's readoption hearing was on 11-11-11. Elijah's fundraising benefit was on 10-10-10. I wonder what 12-12-12 will bring us in the adoption world. Hee hee...I wonder if our mothers are still upright after reading that...I'm totally joking though!
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GUESS WHAT?!?! Carter is OUT of the orphanage FOREVER!!!! Praise God!!!!! Hop on over to Jake and Ashley's blog at http://homeiswhereitsat.blogspot.com. Can't wait to meet that boy! Hopefully on Tuesday! Please pray for them as they finish up the visa processing and for a safe flight home!
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Lots of crazy busy appointments coming up. Earlier this week, I brought Jonathan in for an eye check up. Pretty amazing what they can tell with a non-verbal kid. His eyes are fine. Praise God! She just wants to see him every year to see how he's doing. Elijah gets his eyes checked in a week or so. Both boys have hearing tests this next week too. Yes, I should have brought E in a long time ago, but I didn't have any concerns. Well, if they audiologist could fix "selective listening", that would be a concern I'd bring up. :-)
I've always had mild concerns about Jonathan's hearing. I just never knew if it was hearing thing or a cognitive thing or a ??? (no idea) thing. But last week, I had Sarah come up behind him and bang two metal pan lids together - 12" from his head while he was drinking his bottle. He.did.not.flinch. Hmmm....Then she gave one big BANG. He only batted his eye lids. But yet, when he is laying in his crib with his back away from the door, I can come in and say his name a couple of times and he will turn to me. Hmmm....So, we shall see what the audiologist says. But you know what? If he has hearing loss, we will still love him all the more. If he has an auditory processing problem, we will still love him all the more. If he has nothing wrong and just has a high tolerance to loud noises, we will still love him all the more. :-)
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The cutest thing...Rachel is now walking around the house singing this song. It is way too cute. We'll have to try to get a video of it.
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Just all over the place tonight with this post, so I'd better stop. We are all doing well. I'll try to post some more pictures soon! Have a great weekend!
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.
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...
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. :-))
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.
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!!!
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. :-))
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 foundHERE.
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".
************************************ 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!
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.
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
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!
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 Fact: Babies and children (and adults too I assume) w/ Ds often suffer from constipation. According to http://www.ds-health.com/constip.htm "In children with Down syndrome, two factors exist to make constipation more likely: low muscle tone and decreased motor activity." Click on the link for more info (if you dare!) :-) What to do about it? This blog has LOTS of great, natural ideas. http://dsdaytoday.blogspot.com/2011/10/constipation-causes-and-cures.html
What have we done here? Eliminated bananas and most cheese from the boys' diets. We also supplement with "Trace Minerals" which has a lot of magnesium in it to help them keep things movin' along. There are days when they still struggle. I do hope to implement some of the ideas from that blog post though.
Ds Blog:http://www.nogreaterjoymom.com/ I think this is one of the first blogs I've posted of someone I don't "know" personally, but Adeye has adopted 4 girls, 2 of from Ukraine w/ Ds. Once you start reading her blog, you will be hooked! She has a tremendous gift for writing and taking photos of her little ones. But, the real reason I link to her today is the fact that she is offering a $500 Target gift card in a drawing if you donate to one of the families that is in urgent need of funds for their adoption. Please click HERE to find out more details. More importantly, if you can, find a family to encourage with a financial donation, and don't forget to pray for them. Thanks so much!
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The progress the boys are making continues to astound me. Just today, Elijah was finishing up his lunch as some of his older siblings were already outside playing. He signed correctly (and said parts of each word!) "Swing outside"!!! Totally in context and totally correct. Whatta boy!!! Of course, I let him go for a bit before nap time. :-) Also, the other day, I saw him running. That may sound funny, but he has never really "run" before. It is usually a very determined walk that is as cute as can be. But, the other day he was lifting his feet and bending his knees. Go Elijah!
"Baby J" is making lots of progress too! He has started doing a combination of inch worm/army crawl to move himself across the floor and is transitioning from sitting to lying on his tummy intentionally (although as I was typing this, he toppled over :-)). He has started to hold his bottle a bit. And the best thing...he is tolerating a bit more texture in his food!!! Yay!!! The first few months, if he had anything except the stage 2 baby food purees, he would spit it out, sometimes all over the person feeding him. He rarely does that now. SO happy about that! Hopefully he will begin to tolerate homemade baby food soon too 'cuz organic baby food ain't cheap. :-)
So, there you have it. A little update on the boys! I'm SO proud of them and SO proud to be their Mama!
Ds fact:The "sandal gap" is often found in people with Down syndrome, but not exclusively. A sandal gap is extra space between the big toe and the second toe. Neither one of my boys have one, but Ruby has a super CUTE one. Check it out HERE.
Ds blog: http://livinonlove-lifewithextratolove.blogspot.com/ I posted a photo yesterday of Ruthann's 2 beautiful boys from the walk. I first met Ruthann at a Mom's Nite Out thru our local Ds support group over a year ago. (They let me come even though I hadn't adopted yet. Wasn't that nice? :-) ) Anyway, she moved a bit further away, so I don't get to see her as often anymore. :-( But she is a very special lady! I mentioned that she and her husband recently adopted from the orphanage Sarah visited last summer. But, their other son w/ Ds was adopted domestically at birth. Isn't that cool? Please stop by and say hi!
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Ok, some more about our "spectacle" stroller. I've decided I need to remember that the Lord called us on this journey and that I will gladly be a "spectacle for Jesus". In other words, I want to give God all the glory for our family and how He made it. :-)
So, our new family game is to count how many comments we get on any given outing. LOL At Day on the Farm it was 11. The day of the Walk, we stopped by the farmer's market first. Total for the day: we stopped counting after 20. Little Farmer: 12. Most of the comments are along the lines of, "Wow, I've never seen a stroller like that." "I need stroller like that." "Where did you get that?" "Wow, mom, that's quite a load" - usually by a man. :-) Anyway, it makes for a fun game!
The stroller is Valco Tri-mode Twin with the Joey seat purchased separately. I LOVE IT!!! Valco is fairly new to the US and is based in Australia I believe. The stroller is wonderfully made and VERY easy to push, even with 70+ pounds of kid in it. The tires are inflatable and an air pump is included. The seats can recline completely flat, so that is wonderful for when Jonathan needs to nap. The buckle on the strap is almost impossible for any child (or Grandma!) to undo. :-) The seats are each rated for 45# each I believe.
Two downsides to the stroller: It is a bit heavy and to get in and out of the back of the van, but worth it to me. Secondly, the storage basket underneath is very roomy, but because of the metal bar down the middle, it is very hard to get a diaper bag in it. We just strap the diaper bag over the handle.
J is lovin' it!
Rachel in her "Princess Seat"! She gets VERY upset when one of her brothers sits there instead. I've had J sit there on picnics so I can feed him. She fusses at me. :-)
The front wheels have a "tri-mode" function by simply turning the knobs on top of the wheels. 1. Swivel 360 deg 2. Swivel 45 deg 3. Lock straight so it can be used as a jogging stroller (Ha! Doubtful I'll ever use it like that, but maybe Pat will!)
Rebekah just wanted to be in the photo. She's not in the stroller. However, there is a "hitch-hiker" that can be purchased to add to the back of the stroller for a 4th child to stand and ride. Wow!
Ds Fact: To continue about Celiac disease from my post yesterday two days ago - oops! More from this site: http://www.ds-health.com/celiac.htm
What Celiac disease is in case you are not familiar with it: The small bowel has many roles, one of which is
to absorb nutrients from our food. Celiac disease (CD) arises when the lining
of the small bowel becomes damaged from exposure to gluten, the protein
found in wheat, barley and rye. (Oats may be involved because oats are often
contaminted with gluten from other grains during the milling process.) The
small bowel becomes unable to absorb water and nutrients, causing a number of
different symptoms.
Since CD is more common among people w/ Ds, our boys need to be tested for it. Here is a bit on how it can be easily done.
Recent research has found that 97 to 98% of all cases of CD
are found in people with certain genetic markers. These genetic markers are
called HLA ("human leukocyte antigen") markers. There are two markers
that are associated with CD: HLA-DQ2 and HLA-DQ8. In cases where CD is
suspected and there is an IgA deficiency, these markers can be looked for
instead to determine if a small bowel biopsy is warranted. Children with DS and
CD also have the same markers. Interestingly, the genes for the HLA markers are
on the chromosome 6, so the connection to chromosome 21 still needs to be
discovered.
I think that is fascinating! And the GREAT news...Elijah does NOT have either of these markers! YAY!!! A big thank you to his parents for that one. :-) However, that still doesn't mean he may not have a form of wheat intolerance. We'll continue to investigate that...
And a very interesting tidbit I just read on that site for adoptive parents: It's important to note that infection from Giardia, a
microscopic parasite found worldwide, can mimic CD. Diagnosis of this infection
is done by special tests on the stools. Elijah was negative for Giardia, but it is good to know.
Ds Blog: http://treasuresinhiddenplaces.blogspot.com/Go check out the all of the exciting items being auctioned off to raise money to help bring Teagan home! LOTS and LOTS of wonderful things. Please go check it out. Thanks!
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Down Syndrome Awareness Walk - Saturday, October 1st, 2011
I am SO VERY GRATEFUL for everyone who came to support us and the boys for the DS Walk. It really means so much to me. The Walk was a huge success! Over 1200 people attended and over $62,000 was raised! Amazing!!!
A fun little tidbit for those of you that were at the walk - The Walk Ambassador, Tim Ditter, is Pat's 2nd cousin. Fun, huh? :-) I enjoyed talking with his parents for awhile at the walk. They are so very nice.
We had plans to be there right away at 10:30 when it started, but alas, it didn't work out. By the time we registered, got t-shirts on, etc, it was time for lunch.
This was our last chilly day, so the kids are bundled up a bit. It has been BEAUTIFUL since then! Highs have been in the 70s and 80s. (Ok, I know it IS going to get chilly and downright COLD very soon. We are enjoying it while it lasts.)
Sarah and "Big" Rachel with Micah and Lucas - Lucas was adopted from the very same orphanage that Sarah visited last summer on her mission trip! She was thrilled to meet him! I was happy to meet him too and visit with his mama for a short bit. :-)
After lunch, we were sitting listening to the pre-walk rally, and Sarah came to get Elijah to go and meet Rachel Coleman from Signing Time! There was no line to see her, so we chatted for awhile. :-)
Can you see how Elijah is trying to move away from her? He has watched her millions hundreds of times on DVD...seeing her in person was...well...just really weird for him! :-) Heck, it was a little weird for me too! But, she is very gracious and seems very down-to-earth. I really enjoyed hearing her story at the pre-walk rally the night before. I don't think there was a dry eye in the place. For those of you that don't know, her oldest daughter was born deaf. Her second daughter was born with spina bifida and later diagnosed with CP.
I asked her about this video. Her daughter, Leah, is AMAZING!
Rachel even signed "Hopkins" cards for Rachel and Rachel. :-)
I totally stole this from Sarah's blog!
Our team! (How much you wanna bet mom will steal this part for her post?? I know she will!) Back row - Left to right - "Big" Rachel G holding Jonathan, Mrs. Rheann E, me, Mom, Dad hiding behind the balloons holding Elijah, Mr. G, Josh G, Kaitlyn K, Mrs. G, Grandma Eileen B, Anita F, Auntie Debbie (aka Auntie Crackers), and "Big" Rebekah G. Front row - Left to Right - Alexa E, Andrew E, Erik E, Anna, Isaac, "Little" Rachel in stroller, and Rebekah.
Finally - the walk! Who needs the stroller when you have Daddy's shoulders???
Big Rachel and Sarah decided they wanted to carry Jonathan. He is one heavy boy! Their arms must have been tired after the one-mile walk.
Part of our team
Here I am pushing the "Spectacle Stroller". I'll post more about that in a different post.
Rachel Coleman performing some of her Signing Time songs after the walk.
