Schye Family

Desperation

2012-02-08T19:15:00.000-07:00

My first statement here is to the "troll", Batya, Casey, whatever you are calling yourself today, go away and don't come back to my blog! Do not leave me a nasty comment, or a comment telling me how illegal everything is that we are doing. We do not need your advise or input. I really don't care that you don't like what I'm doing, or what other bloggers are doing. Maybe try some therapy, and there are lots of prayers being said for your cold hard soul!

There have been several blog posts in the past day or two that have really caught my attention...and my heart. The first is by a momma in EE adopting and has been blessed to spend time with several of the other children in the orphanage. In fact, when the orphanage workers saw a family come for one of their children, despite the fact that they were so shocked that someone would want them, they lined up the kids and took photos so as to list them and hopefully find them families. Now several of them are listed on Reeces Rainbow! Many of them are older and in desperate need of homes very soon, some have Down syndrome, some CP, some other needs. Renee also offers an inside "mother's perspective" to these kids' abilities and personalities, and into adopting older children with special needs in general. Please visit Renee's blog here.

Next is Adeye's latest post. She has opened her blog to others to share children who are in desperate need of homes, either because of severe, unaddressed medical problems, or institutionalization. I don't know what to say. The last time I looked the list had 94 children on it. Including my sweet Lilly. I'm obviously not the only one who fears for her life. Please, go look at their sweet faces, and pray, donate if you can, and better yet, ADOPT one if you can!!

Last, but not least, I direct you to Jane. Jane lives in UK, and is going to visit an orphanage in EE...well, you can read her story. She wants to help these kids, but can't do it alone. Can we help her, help them? I looked thru this post teary eyed, until a certain photo caught my eye...Stacy! My darling Stacy, who I raised money for over Christmas is at this same orphanage! Now this has special meaning to me! I adore Stacy and pray every day for her family to find her. This photo of Stacy in the crib is a new one, taken by a family who was there recently adopting two boys out of the same orphanage.

Kellan's physical therapy

2012-02-01T22:23:00.000-07:00

Kellan has PT once per week, and he has the most amazing therapist. She works his little tail off. He fusses at her sometimes because he doesn't want to work, he wants to play! This video is what Kristi would like to do the whole hour of therapy.

So he plays her game, he humors her a little (he's doing a great job walking, don't you think?) but soon enough he is showing Kristi what he would rather do the entire hour!

He's so funny, and quite a cutie too, so he gets away with alot!!

I want to share with you what I witnessed in the past 2 days. There is a family, the Dirkes', who are adopting a little girl, Charlotte from Eastern Europe. The region she is in requires 3 trips over there, with them being able to bring her home on the 3rd trip. Their court date is February 14, and they were far from where they needed to be financially, despite a great fundraiser that had been going for quite a while. Well, the Reece's Rainbow and adoptive parents community is far and wide, so a friend reached out to another friend, who is an awesome fundraiser and has an amazing list of "followers" on her blog and Facebook that answer the call when needed. Patti wrote a great post, and put the word out on the 'net that little Charlotte's parents needed some help. And help they received! In less than 36 hours almost $7,000 was raised for this family! Enough to ensure they will leave Monday to go back to their girl. They haven't seen her since November. Three months. My heart breaks for Charlotte, meeting her mommy and daddy, then having them leave, and not really understanding any of it. But that is all about to change. In March, they will go back a 3rd time, to bring this sweet girl home, forever. The Dirkes' could still use a bit more help, for that 3rd trip. Let me tell you that this $7K that was raised didn't come in $500 or $1,000 increments (although one kind soul did donate $1k!!) It came in large part from $10 here, $25 there. Yep, a whole lotta us who love the orphan, and demand to see them in a family, loved, sheltered, every need cared for. If you feel you can help, please go to Patti's blog, there's a chip-in on the right side bar. All donations are tax-deductable and go to Reece's Rainbow. I go to bed honored and proud to be part of such an amazing community, most who have never laid eyes on one another, but still lay it all on the line for each other!!

Prayer Warrior, Guardian Angel

2012-01-22T21:42:00.002-07:00

Meet Sutton...I am his Prayer Warrior. Isn't he adorable?? He is about 10 months old, and has Down syndrome. I hope and pray his family will find him quickly so he can get started on early intervention and have the best chance at the best life! Are you able to pray for a child to find a family? If so, please go here.

Now meet Carolina. I am her Guardian Angel. This is a new project through Reece's Rainbow that is for the children with other special needs besides Down syndrome. Carolina is 5 and has Cerebral Palsy. She's so cute! She just received a large donation to her grant, so she is at $1,298. She has already been transferred to a mental institution for adults, so she REALLY needs a family quickly!

Both of these sweeties need additional funds added to their grants to help prospective families. To make a tax-deductable donation, click on either of their names. Thank you!!

Thank You

2012-01-17T15:45:00.000-07:00

I want to thank everyone who puts up with my repeated requests for prayers and donations to help "my" little orphans and the families who rescue them. I know that just because this is my passion, doesn't mean that it's yours. I have gotten many great comments from friends and family, complimenting me on what I am going to try to help. But I'm guessing there's some who just get annoyed and wish I'd leave them alone. And that's ok. If you are one in that group, feel free to not follow my blog, unfriend me on Facebook, tell me to stop sending you emails. I'm ok with that. Because guess what?! I'm NOT GOING TO STOP asking, begging, YELLING for these children who have been given NO chance at a life!! This could easily be my Kellan, and wouldn't you want to help him?

Does he not deserve a loving family? If he does, then why doesn't Lilly? Or Sutton?

I "met" some great gals over the Christmas time fundraising on a special Facebook group RR arranged for us to network. And it was great! We worked together so well, I think there were about 150 of us on there, some young teens, some not-so-old grandmas. Some with no children, some pregnant that delivered new babies while fundraising! Lots of awesome fundraisers went on: jewelry of all sorts, neat picture-on a-bottle cap-keychains, quilts, even iPads and cameras! LOTS of money was raised. Totals are posted. Go check it out...pretty amazing!

Let me end this post by saying the vast majority of donations came from folks like you and I; $5 here, $10 there. I would never ask anyone to give up their life savings, just a Starbucks, or DVD rental. (note: if you happen to win the lottery, then be prepared for me to bug you for a little bit more!)

Katelyn has a family!!

2012-01-12T12:22:00.000-07:00

Yes! Katelyn was my 5/5/5 child over the summer, which was Reeces Rainbows BIG fundraiser for all the children over the age 5. She is already transferred to an adult mental institution, so time is of the essence for saving her. As soon as I know who her family is, I'll share! Het photo is along my right side bar, she's so cute, but looks so terrified in her photo! Hang on baby girl, your momma and/or daddy's coming!

Half way there baby!

2011-12-02T16:24:00.000-07:00

I started fundraising as Stacy's Christmas Warrior on November 1. Today is December 2, half way thru the Christmas Warrior event, and I am pleased as punch to say we passed the $500 mark! Half way through and half way there! Now, it has not been easy. I did a craft show at a church that raised much less than the time and effort was worth. But I bounced back with a bake sale at the hospital where I work that raised $200 in less than 4 hours, and I had some fantastic coworkers (and mother) who helped me bake so it wasn't a huge amount of work. I created a Facebook page for Stacy that I have donated items for sale. My mom gave me aprons and pillow cases, my aunt gave my adorable stockings she makes, my daughter donated beautiful prints of an angel painting she created, and my kids and I had lots of fun creating beaded angels. Well, I'd had TWO sales in a month! So I decided to have a birthday sale and cut all my prices in half! I admit, the prices may be a bit high, but they cover shipping costs, and look what a great cause it's for! A beautiful little girl, who lives in an adult mental institution all because she was born with an extra chromosome and deemed "unfit" for society.
Now that I've gotten to the halfway mark for Stacy, I feel the need to help some of those who are having a hard time fundraising. So I am going to direct donations from Stacys store to other orphans for part of the next month. I've asked warriors on my Facebook group to let me know if they want my help. I will just ask that they spread the word on the store, and try to get buyers. I feel like the way it's gone for Stacy, I'll be left with all my stuff at the end of this, and I'd rather the money go to someone. So watch for me to announce who will be the first orphan to benefit! If you haven't donated yet, please consider doing so, even $5 makes a difference, believe it or not!
Last but not least, my little Kellan is making BIG progress in the walking department! His PT is going to put him on the treadmill next week! So watch for photos there too!

Christmas Angels

2011-11-01T21:39:00.000-06:00

To the right is my Christmas Angel, Stacy. My goal is to raise $1,000 for her by Christmas. If you would like to help, click the "donate" button which is below Stacys photo. All donations of $35 or more will receive an ornament with her photo on it! What a great way to "give" this Holiday season! All donations are tax-deductible. I'm so excited that ALL the RR children with Down syndrome have warriors this Christmas! I'm not sure how many are listed, but there are dozens! I'm hopeful that lots of new families are found through all of our efforts! My plan for fundraising is: a couple of bake sales at the hospital I work at, which several of my coworkers have graciously agreed to help bake for, and at least one craft show, next weekend. I have my pillowcases from my mom and aunt to sell, my aunt is going to give me some other things she makes as well, Christmas stockings, and stuffed chenille bunnies and bears. Another aunt of mine was in town last weekend with her extensive bead collection, and we made several angels that can be used as cell phone charms, key chains, or zipper pulls, like on a purse or jacket. I'll post photos of everything on here soon, so if anyone is interested, let me know!

Updated info on Lilly...not good

2011-10-11T21:15:00.000-06:00

This breaks my heart...
http://reecesrainbow.org/lilly-3g

Guess whose family found them?!?

2011-09-29T22:06:00.000-06:00

Vanessa 3G

Yep! She's now listed in the MFFM on Reeces Rainbow!!

To save Lilly and Vanessa

2011-08-30T14:28:00.000-06:00

Wow, it's been a while again since I've posted! I'm really good at keeping up with all my blogger friends to the right, but not so good at keeping up with my own! The past month or so I have seen some amazing things happen in blog and facebook world. I saw my friend Renee reach what some may have thought was the unreachable goal to bring home her sweet Paisley, who she gets to meet in less than 2 weeks!! We watched that meter rise that final $8,000 in a matter of weeks, and I for one was speechless! Now, I didn't win any of her fabulous prizes, but that doesn't matter!! Ok, I did win Renee's yummy toffee, but I couldn't have her making and sending me that when she was supposed to be focusing on bringing home her girl! She can make it for me when I come to LA to meet them!!

The next awe-inspiring event took place on Adeye's blog. Her mission was to save a sweet little girl named Liliana who is in Bulgaria. http://www.nogreaterjoymom.com/2011/08/because-it-is-our-problem.html Adeye collected, overnight, some great prizes, including 2 iPads, and with that proceeded in the next 24 hours to raise over $23,000 for Liliana!! And the word on the street is now she also has a family!

Most recently, God's work was done through many to help Amy bring Liam home. http://amyandsons.blogspot.com/ What sets this story apart is that there were no prizes to be claimed upon reaching her goal, only the knowledge that we did something good, something really good. Because really, she is adopting her 3rd son with Down syndrome as a single mother, and let's face it, that is REALLY GOOD!! She had some awesome people on earth and in heaven working for her Liam, and it only took a couple days to reach that seemingly unreachable bar! It amazes me how many people are willing to spare a few dollars to help the helpless. I know there are so many more who would open their hearts and homes to these special orphans, if they just had the money it takes to adopt. Who has that kind of money just laying around??

So that brings me to Lily

and Vanessa

These two girls have a whole lot in common. They are both beautiful blonde-haired, blue-eyed girls who happen to have Down syndrome. They both have heart conditions and need to see a cardiologist ASAP. They both are listed on Reece's Rainbow. They are both in the same region in Russia. They are very close in age, Lilly is 4, Vanessa is 2. They both have very little money in their adoption grants. They are both living on borrowed time. They both have no mommy or daddy to call their own. They both have no one to love them, tuck them in at night, cuddle them when they are hurt, sick, or scared. But the biggest and best thing (I think) they have in common, is a whole lotta people who pray for them, love them from afar. I have encountered many a momma, and sisters, who love these two and want nothing more than to see them find a home, yesterday.

Now the problem is this: none of us have an iPad or fancy camera, or lots of gift cards to give away. And most of us have blogs with not too many followers. We don't have the traffic, but we have the voices. Together, I believe we can be heard. I believe that people will give, even without the prospect of winning a prize. That being said, I know that great prizes also help alot, so if anyone has any to donate, contact me!! I would love to put together an awesome give-away, or help someone else host one. I believe the key to finding their forever family is to pour money into their adoption grants. I believe their forever family's are already out there, and already know it, they are just trying to figure out how to pay the ransom. That's where we come in. I am asking, no begging, for your help. I am putting Lilly's picture as my profile picture on Facebook for the next week or so, then Vanessa's, then back to Lilly's. Will you change yours too? I am adding a chip-in to my blog. I am starting with just Lilly, frankly because I am scared, scared no one will donate, scared no one will share. But I am even more scared for these girls, that they will not live to see a family if someone doesn't do something soon. Never done this before, but I am taking a deep breath and jumping in. I am donating the first $10, will you give too?
(all chip-ins go to Reeces Rainbow via paypal and are tax-deductible).

BTW, there are 2 awesome girls that are working hard to help Lilly as well, http://www.handiworkforelijah.blogspot.com/. Check them out!!

Look what Kellan can do!

2011-07-14T21:29:00.000-06:00

Here's the link to Kellans latest and greatest accomplishment!

http://youtu.be/oix93-p5qLM

We are SO proud of him, and as you can see, he's pretty proud of himself! It makes me sad, in a way, because it means he is growing up, and I rather enjoy this meandering through babyhood! As I type this, he is cuddled up next to me in my bed, sucking his thumb and running his blankie through his fingers, drifting off into dreamland! He's so darn sweet! He was a rockstar at speech this week, imitating almost everything miss Vicki would do. He has picked up on putting his finger to his lips like he's saying "shhhh"!!

That started the other day when he was talking on his pretend phone and Justin was trying to get his attention. Kellan turned around to him with his finger on his lips, it was so funny! I tried to upload that photo but it's not working for some reason, but it's on my Facebook page under mobile uploads.

As July is already half over, I can pretty much say I did not do so well on the 5/5/5 warrior fundraising. My Tupperware fundraiser went good, it should bring in almost $200, but the rest did not. I will try again at Christmas time. I have my eye on a little peach named Lilly at Reeces Rainbow, but I feel like I should probably continue to raise funds for Miss Kaitlyn. Who knows, maybe they'll both have families by then!

Little help here!

2011-06-18T22:10:00.000-06:00

So my fundraiser for Kaitlyn is going very slowly, but I'm not complaining! I'll do the best I can for her. I read so many other blogs where families are fundraising to children they have committed to and struggling, even 1 family that's had to withdraw their commitment to a child due to financial hurdles they couldn't overcome. I feel such a strong desire to help as many as I can, yet can't help as many as I'd like to. I guess I am led to the ones I'm supposed to help! That being said, we had a garage sale this weekend that I had decided to give 10% to Kaitlyn. Shelby had a bake sale to raise money too, so we decided to split the money with Olgas family to help get her home quickly-as she has waited long enough for a family or her own. I am happy to be able to add to both Kaitlyn and Olgas funds. My Tupperware fundraiser is going fairly well, so that will help Kaitlyn too. So if anyone is able to help and interested in my fundraisers, please see my previous post. I appreciate any help! I got a little (big) uplift tonight, seeing pics of the Cox family bringing home Mia. That just gives this fundraising more reality, something tangible to work towards. When I donated to them months ago it seemed like the day would never come that they would bring her home! Congrats to the whole family! You can see their journey at http://kareensjourneyhome.blogspot.com

Good night!

Pillowcases (and more) for Katelyn

2011-05-18T12:47:00.000-06:00

Here are some of the pillowcases I am selling for Katelyn's fundraiser. Above clockwise from left is Pink Panther, baseball, Diego soccer, boys soccer, Scoobey-Doo, and Vikings (flannel)

This is material for more: Disney Fairies, cats, and Little Mermaid (above)

Thomas the Train, Hot Wheels, and Cars (below)

yellow, butterflies in both yellow and pink, and peace sign tie dye

All pillowcases are handmade by my mom and aunt. All are standard size and regular cotton, unless noted. They are $12 each, or 2 for $20. If you have a special print in mind, we can do almost anything, special orders will be $15 each.

This is the wolf my 17 year old daughter painted. I will have prints made. Isn't it beautiful??

Here is the link to the Tupperware fundraising flier. http://order.tupperware.com/coe/app/tup_widget.show_page?fv_page_code=fundraiser_us&fv_section_name=home&fv_category_code=shop

If you want to order from that you will have to send a check to my Tupperware lady, then she will give me a check at the end with all the donations. In that case, email me at christina0469@msn.com. It's best to leave a comment on here too, since if you aren't in my contact list msn likes to put those in my junk box!

5/5/5 Warrior

2011-05-13T20:53:00.000-06:00

If you have visited my un-updated blog recently, you may have noticed the new picture on the right side that features "Katelyn". I have become her 5/5/5 warrior. Basically what this is, is that to celebrate Reece's Rainbow celebrate their 5th anniversary and over 500 orphans-no-more, they are pushing advocacy for all the 5 year olds listed. The goal is to raise $5,000, and help them find their forever family. Ok, so I admit, I'm a bit overwhelmed by those lofty goals. My blog doesn't have many followers, and that's how a lot of people fund raise. But I am determined to do the best I can for Katelyn, and so is my Shelby. She is already brainstorming ideas to raise money for her. The first fundraiser we are doing is pillowcases. I have donated a few of these to other blogger-friends fundraisers, and the response has been quite positive. My mom and aunt hand make these and we have dozens of themes. We have cotton and flannel. All are standard size. I'll get some pics posted soon, my computer crashed and it has all my photos on it, so the computer guy is trying to retrieve everything. In the meantime, pillowcase themes include cats, horses, Disney, Dora, butterflies, angels, fish, some sports teams, and lots of different colors. Each is $12. You can pay by clicking on the button to the right, it goes directly to Katelyn's adoption account on Reece's Rainbow, and is completely tax-deductable. Once you have paid, email me that you have and what type of pillowcase you want. We'll take special orders too!! Thank you for helping me help this sweet little girl, who has been an orphan way too long!!

18 months?!?! Really?

2011-04-04T21:34:00.000-06:00

(note: I wrote this last night, and am posting it now with pics!!) Kellan loves his great-grandpa

Well I was all excited to finally post again, and have all these cute pics of Kellan, but my computer sucks and I'm ready to throw it thru the window. Everything I try to do takes forever, and half the time it say internet explorer has stopped working and closes me out of everything! UGH! Maybe I'll get lucky on one of the iPad giveaways I keep entering and finally WIN! In the meantime, I can give an update on my favorite little 1 1/2 year old! It seems so weird to say that, I can't believe it's been that long, and on the other hand I can't seem to remember not having him here! Kellan is growing by leaps and bounds! He weighs almost 21 pounds and is almost grown out of his 12 month clothes! He did just end up with another ear infection, darn it. We took him in on Friday because he had 2 rough nights of coughing like crazy and obviously bugged by something. I was really surprised to hear the doctor say his right ear had pus behind the ear drum. So much for the tubes. She couldn't see the right one, but our regular doctor has always had trouble seeing that one too, so I don;t know. We'll go back in a couple weeks for a recheck and if she still can't see it I'll call the doctor who put them in. Thankfully, she is as awesome as they come, and I know she'll take good care of Kellan. The doctors and nurses at the clinic where the kids go love Kellan so much that they have asked to have his picture taken professionally and put up on the wall in the clinic! They have several photos of kids up, so it'll be fun to add our little man to the mix! Kellan has finally decided that it is fun to sit up, and it makes playing ever more fun! He's still a bit unsteady, but doing really well! So his PT is really pushing the crawling now, which he hates! Kellan rolls to get where he wants to go, and there's no where he can't get by rolling! I have some fun video of him sitting and playing and rolling around, if I can just get my computer to upload them to my youtube, I'll cross post them here. Kellan is expanding his talents to signing too. He signs "more", "eat", and "all done", waves hi and bye, and blows kisses. He still loves his thumb, and now has to have a blankie to hold too...so darn cute! He still has just the 5 teeth, but has decided that's enough to justify not eating any more baby food! He loves anything with spagetti sauce, has eaten and liked a pickle, lemon and lime! Well my wonderful computer has done it again, so I am saving this to a word doc until tomorrow, shutting the piece of #@&% off, and going to bed. Hopefully a new day will bring a better attitude to both me and it!

A day to save Olga...I got it published! thanks, Patti!

2011-02-28T22:04:00.000-07:00

Dear friends,
So many of you already know this beautiful little face....

Olga turned five last month. She has spent the last five years in an orphanage in Eastern Europe, without the love of a mommy and daddy- simply because she arrived in life exactly as God designed her. One chromosome too many, and her fate was sealed from birth.

Sealed, because in Eastern Europe, babies who are born with Down syndrome are deemed unacceptable at birth. They are discarded as cast-offs of society, and when they turn five they leave the only home they've ever known...

And I wish I could say that for most of these children, leaving that home means going to a place of safety, a place of happiness, a place where they would finally know the love of a family...know what it means to be cuddled or sung to or read to, tucked in at night, prayed for, loved.
Instead, they are taken to a place that most people wouldn't leave their family pet.

A place of living hell, where they will never know the tenderness of a parent, never know the security of being raised in a family, and there they will stay, one ugly, pain-filled day at a time...until they die.

I read a post last December that stayed with me to this day. It was called from baby dolls to bedstraps.
The blog author wrote about Elizabeth, an orphan on Reece's Rainbow who had been transferred to a mental institution, waiting for a family to step forward for her. Her words still haunt me.
I wonder where she thought she was going as they led her out of the orphanage that day. Did she think that maybe it was finally her turn? That they were taking her to her forever Mommy and Daddy?
And when they instead took her inside that dreadful place, when they shaved her head and tied her to a too-small metal crib
when they turned their backs and
walked
away…

when they left her confused, terrified,
in a room where the wails of schizophrenic adults echo through the cold air
what was going through her young mind?

Did she wonder if she was being punished?

How long did she hold out hope that this was only temporary?
That any minute, they would come and take her back to the baby house
to her baby dolls and teddy bear,
to her best friend, Angelina?

Did she long to free her arms from the restraints
to cover her head with her hands to drown out
the scary noises
the scary sights
the scary smells?

That could be my Lily….

It could be your child.
And what if it were?
What if you woke up one morning
and by some hellish, twilight-zone twist of fate
your child wasn’t still tucked into that warm bed down the hall,
what if your child was trapped
across the dark sea
in that nightmare that is
the institution?
What
would
you
DO?
Rescue those being led away to death; hold back those staggering toward slaughter. Proverbs 24:11

Elizabeth is being rescued today, thanks to the efforts of that blogging mama, and others like her.
Olga is being rescued today, thanks to so many of you...you gave so much and created such a large grant that a family was able to step forward and start the process of adoption.
The Abells have done so much already, towards rescuing Olga. I can't even imagine all the paperwork and prayer and emotion and finances that goes into an international adoption. They have done numerous fundraisers, and will continue to do so until they can bring Olga home.
Through the help of so many, a grant of over $13,000 has been raised for Olga's adoption. That grant is set aside for the final travel costs and fees that it will take to bring Olga home. It will take every penny of that and then some.
Right now the Abells are in need of raising the $7,000 that is needed to submit their dossier for Olga. Without that dossier we don't even know if Olga has been transferred yet. Here in America you just pick up the phone and ask these questions. But here in America we don't tie five year old girls to cribs to keep them from climbing out.
The Abells need to submit that dossier as soon as possible- at the very least to find out if she has been transferred already- because I know an army of prayer warriors who is going to want to know that piece of information as well. And at the very most, it could be able to hold Olga at the baby house until the Abells can rescue her. I wish I could say with certainty that she won't be transferred- truthfully we just don't know that.
Olga has been so heavy on my heart for months- friends, I want you to know that I DO trust that God has a plan here.
I prayed like crazy for a way to help the Abells. I truly believe that there is a network of people who love Olga here in blogland...a net that is woven by God and is stretching out across this blessed country we live in, and even beyond to generous hearts in other nations. I really cannot express enough how thankful I am to be a small part of what God has already done for Olga, Peter and Kareen. But I don't think our job is done.
Olga needs us.
I don't want her to spend one more forsaken day in that place than she has to.
We're not doing a giveaway here today. I don't even think we need to do one- I know so many just have a heart to help and to give, and prizes were never the real reason we all gave anyway.
So I'm just asking- for one day- for you to do whatever you could to help Olga. Whether that's $10 or $20 or even a hundred...if you are able to help raise this money for the dossier, please do so HERE... This is the Abell's chip-in.

This is the link for the Family Sponsorship Page on Reece's Rainbow...every single dollar goes to the Abell's adoption fund, and every single dollar will help.
We're calling this A Day to Save Olga, because there are about 17 of us blogging mamas and one blogging grandpa who have set aside this day to blog, post on Facebook, pray, give and spread the word to SAVE OLGA.
Will you help us?
I know you will:)
Love,
Patti

A day to save Olga

2011-02-28T21:11:00.001-07:00

Ok I'm a little frustrated with my lack of computer skills, and wanted to post this entire entry on my blog, but couldn't figure out how to do it. Patti, a wonderful blogger I follow, posted this today http://babynumber10.blogspot.com/2011/02/day-to-save-olga.html. I don't think many of us in the US realize just what happens to babies and children with Down syndrome (and other "abnormalities") in some other countries, like around Eastern Europe. Look at these pictures, and tell me you knew this was how it is there in the year 2011.

A Home For Riley: What Do Riley And The 2010 Emmys Have In Common?

2011-02-23T21:21:00.000-07:00

A Home For Riley: What Do Riley And The 2010 Emmys Have In Common?: "STAR TREK! Well, not exactly. Yes, that is Chase Masterson (Leeta from DS9), but the other person in the picture is Rob's friend Melissa Lew..."

MASHA HAS A FAMILY!!

2011-02-17T10:43:00.000-07:00

Tears of joy! I don't know what it is about that little girl, but she has one lucky family on their way to bringing her home!! Can't wait to find out who they are!!

MASHA

2011-02-13T21:42:00.000-07:00

I've been reading other blog friends posts about this sweet girl from the Ukraine, Masha. http://reecesrainbow.com/?s=masha I think of her and pray for her frequently. I've emailed Andrea from RR about her, I've emailed another blog friend about her. I've even emailed and text and talked to my husband about her!! What can I do to help this girl, who hasn't been given a chance in this world. I know, there are lots of others who are in the same boat, but there's something about this one. She is 4 years old, and weighs less than our 16 month old, who is underweight himself! Everyone talks about how sweet and friendly she is, how the workers there don't want to see her go to the institution, how she'll never make it there. So, what can I do? Well, for now, I can pray, ask others to pray, and FUNDRAISE!! Yes, that I know how to do! She already has almost $18,000 in her grant, and the total needed is about $25,000, so I hope to get her a bit closer to that! I will update soon what my plan is, because I really don't know right now!! So stay tuned!! And check out these other great photos of her and what others have said about her!

http://stclairadoption.blogspot.com/2011/01/crazy-in-love-with-masha.html

http://psalmsixtyeight.blogspot.com/2011/01/tale-of-two-birthdays.html

True Love Giveaway

2011-02-07T22:10:00.001-07:00

Please check out sweet Lily's blog by clicking the link to the right, below the RR calendar. Lily's momma has put together an AMAZING giveaway, that works sort of like a raffle. The minimum donation is $10, and there are a slew of great prizes you could win, including an iPad!! Lily's mom is on a mission to help bring home as many orphans as she can, and she is doing a wonderful job, but still needs lots of help to do it!! I'm donating, will you??

A Home For Riley: Update On Masha

2011-02-04T22:35:00.000-07:00

A Home For Riley: Update On Masha: "Thank you, everyone, for sharing about Masha and praying for her. I found out this morning that a very generous donor has raised her grant f..."

More than $500,000 in adoption grant funds available

2011-01-30T21:33:00.000-07:00

Reece's Rainbow has More than $500,000 in adoption grant funds available!! There's never been a better time to adopt!!

Kareen's Journey Home: iPad Giveaway

2011-01-28T19:38:00.000-07:00

Kareen's Journey Home: iPad Giveaway: "We are kicking off our fundraising for Kareen with an iPad giveaway! iPad Giveaway for KAREEN! Kareen is a 4 year old little girl w..."

Patience...and repetition.

2011-01-27T21:05:00.000-07:00

Kellan loves to take his socks off, then try to put them back on....

I know they go on here...

But how the heck...?

I'll just show off my flexibility!

I've written before about how much patience Kellan has taught me. Well now I've discovered the other key to success with Kellan...REPETITION!!! He is a very smart cookie, and really does learn quickly. His speech therapist can work with him and in 45 minutes have him doing something new. Every week she does this! She is amazing, I believe she has a gift. Kellan is now consistently doing "so big", giving "five", waving hi and bye bye, clapping "yay", giving kisses, and signing more and eat! I almost can't keep up with him! Now we are working on signing all done, and blowing kisses. He also will roll a ball or truck back and forth, but his favorite game is "I drop it and you pick it up and give it back to me, and repeat game"!

His speech therapist has a baby doll that she gets out now and wants him to start using a spoon to feed her. As soon as he sees this doll his whole demeanor changes...he does not like the doll! It's almost funny to watch him. She sets the doll on the tray of his chair, and he pushes her off! She always offers him the choice between 2 things to play with. She usually holds up bubbles and something, and I always know he'll pick the bubbles first! He loves to pop them! When it's doll time, she doesn't give him a choice, she knows he'll never pick her! So I guess we better dig out an old baby doll from downstairs and start playing with it with him!

Kellan had a fun playdate with his friend Shelby today. She is a bit over 2, and non-stop energy! It was so fun to see her run around and talk and be silly. It was also kind of exhausting! I guess it's good to see what I'm in for in the not so distant future!!

Kellan also had his 15 month well baby doctor visit, during which we found out he is not so well! His right ear was infected and full of fluid, so obviously the tube is clogged, UGH! Poor pumkin, so he's on antibiodics again, so I'm sure he'll get thrush again, and get it all over his sucking thumb, AGAIN!! I sure hope this is the last of these!

On a good note, my insurance agreed to pay for his surgery at in-network benefit, which is a huge savings to us. Just the doctor's office consult alone was $250, but in-network it's only $30 for us! Thank God my insurance has been so wonderful, for the most part. I owe it all to the wonderful case manager they assigned to Kellan right after he was born. She goes out of her way to help us. I may have to take a trip to Helena just to meet her and thank her in person!!

Well it's off to bed for this momma!

I spoke too soon

2011-01-15T20:34:00.000-07:00

Silly boy!!

Look at those baby blues (and messy face!!)

So I guess I was a little too quick to brag about how well Kellan was doing after surgery. He had a few great days, then the Friday after his surgery started a downward spiral that almost landed him back in the hospital. For 3 days he pretty much cried straight through, stopped eating and wouldn't take a bottle. We were giving him pain medicine around the clock, including codeine, and nothing made him feel better. At first we thought maybe his top teeth were bugging him, as they are trying to make their debut, but after more than 2 days of crying we were pretty sure it wasn't his teeth. Sunday night the only thing I could get in him was ice cream, so at 4 am we were feeding him ice cream because I was so worried about him getting too dehydrated. Monday am we took him to the doctor first thing, and she thought his throat looked infected, plus he had thrush, so she put him on antibiodics. He had lost a little more than 1/2 pound at that point, and by now I'm sure he's lost at least a pound. After the doctor he really never cried anymore, but still wouldn't eat or take a bottle, so ice cream spiked with formula powder became his staple! He went back to daycare on Thursday and his favorite girl got him to drink 4 oz from his bottle, eat a jar of baby food, and a thing of yogurt, all before noon! So now he is pretty much back to normal, which is a relief for all of us! It's amazing to me how much everyone in this house loves this little guy, and how upset everyone was seeing him suffer so much. The worst part about being a mother is feeling so helpless. But we made it through, and I'm sure it's not our last trial we will face as a family!

What a trooper!

2011-01-06T20:21:00.000-07:00

Kellan had his surgery Tuesday, and it went perfect! He was in and out in about an hour, 1 poke for an IV, and no oxygen problems! The doctor said his adenoids were nasty, so we were really glad we decided to get them and his tonsils out. He and I spent the night in the hospital, where they took very good care of us, and he and I cuddled all night. It was great to be able to spend so much time alone with him. We came home yesterday, and today you'd hardly know he just had surgery, he's eating, drinking and playing as usual! What a relief to have that over with! Pics to come...

Tonsils out, tubes in. and Dr. Hickey

2010-12-24T09:18:00.001-07:00

Well I guess it's the no news is good news when it comes to my blogging! Not that this is particularly "bad" news, but Kellan is going to have surgery Jan. 4 to have tubes in his ears and get his tonsils and adenoids out. This came about fairly quickly when his ear drum ruptured Tues night/Wed am, only 12 or so hours after seeing the doctor and getting the all clear on his ears. Granted, his ear canals are very small, so it makes it very difficult to see in there real well, but his doctor is very good with him, and if she saw no fluid or infection, I'm sure there wasn't any. That night, however, Kellan woke up at 11:45 screaming and crying. Now, he never cries, let alone screams, so we knew something was wrong. The next morning he had dried, crusty stuff all over his right ear, so I figured that's what had happened. We took him back to the doctor and she agreed, and said it was definetly red and infected. Her office called the ENT we chose and they were able to get Kellan in the next day (she can be up to a 2 month wait to see!) Dr. Kennedy is generally known in Billings to be the Special Needs ENT, and I've never heard a bad thing about her. Justin flies her frequently and also really likes her, and she already knew about Kellan because of this. She did not disappoint me. I liked her before she even came in the room! So Kellan definetly needs tubes (she said his ear drum did rupture and the other has fluid in it) but doesn't necessarily "need" his tonsils and adenoids out. But since all the other kids have had to have theirs out, she said there's about an 80% chance Kellan will at some point, and my feeling is that if he's going to have to undergo general anesthesia for the tubes, she might as well take the tonsils and adenoids while she's at it! They do better when they are younger anyway. He will have to stay over one night in the hospital, just because of the Down syndrome.
Other than all that, Kellan is doing very well. He has his first 2 teeth. I took Kellan to see a pediatrician in Denver at the Sie Center for Down syndrome at Denver Children's, Dr. Hickey, who has sort of specialized in Down syndrome for the past 22 years, and also has an adult son with Down's. It was a great visit, very reassuring. He and his nurse practitioner spend about 1 1/2 hours with us, playing with Kellan, going over his records, talking to me, assessing him. He didn't have any life-changing information or advice, just reassuring from someone who has seen hundreds of babies and children with Ds. He did start Kellan on prevacid for his spitting up, which he had still been doing tons of. Within a week of starting it we noticed a difference. He hardly ever spits up anymore, where he had been at least 8-10 times per day, and significant amounts each time. His appetite has also increased, we are feeding him about double what we were just a few weeks ago!
Kellan started speech therapy in October, and goes weekly to a wonderful therapist named Vicki. She has taught him so many things, it seems like he does something new every time he goes. He is very good at playing peek-a-boo, loves to clap, and imitates sounds. We are working on teaching him signs, "more" and "eat" being the first two. He also loves to give kisses, big open mouthed ones that if you're not careful, he'll slip you a little tongue!! Physically, Kellan is almost sitting up by himself. He stood for about 20 seconds at PT the other day, which is great because his little legs are like noodles! He rolls and scoots around on his back to get where he wants to go, despite the therapists trying to get him to get around on his tummy and learning to crawl. I'm thinking that's not going to happen! None of our kids learned to crawl, until after they walked anyway!
Kellan is ready for his 2nd Christmas. He has already tried opening a few gifts under the tree, and I suspect he will prefer the paper over any toys he may get! His brother and sisters are very excited for Christmas, and I'm sure they will teach him well the art of opening presents!
MERRY CHRISTMAS!!

Christmas Warrior

2010-11-02T22:52:00.000-06:00

Our YES Kids group has become a Christmas Warrior for Daniel who is an orphan in Russia awaiting adoption. Reece's Rainbow is a non-profit started by a mom to help kids in other countries with Down syndrome find forever families. These kids live in orphanages, some are well taken care of, some are very poor and left alone in cribs most of the time. At age 3 or 4 many are transferred to mental institutions to live out the rest of their lives in deplorable conditions. It is very sad. The fees to adopt overseas is usually over $20,000, so RR raises funds to go towards those adoptions. We are going to try and add to Daniel's bank account in hopes that someone will want to adopt him if some of the money is taken care of. If you donate at least $35, RR will send you a Christmas ornament. All donations are tax-deductable. Thanks for helping out!!

10 18 10 006

2010-10-24T23:22:00.000-06:00

Kellans 1st birthday

2010-10-24T22:44:00.000-06:00

Kellan eating puffs

2010-10-24T22:42:00.000-06:00

Happy Fall!!

2010-10-24T22:18:00.000-06:00

Happy Fall! The Schye household has been very busy since school started. It seems like Justin was gone every 2 weeks there for a while, Shelby and Tobin started soccer, her with 2 practices per week, him 1, both games on Saturdays. Shelby is also taking 2 dance classes, and will start girl scouts this week! Kellan and I went to Bozeman in early Sept for their first Buddy Walk. Justin went to Minot a couple weeks later for their homecoming. Then we had our BIG weekend!! October 2 was Kellan's first birthday, and our first annual Buddy Walk! What an amazing day it was! To see all the pics, courtesy of the amazing Ronnie Ruiz, see our website, http://www.yeskids-mt.com/. We met lots of new friends, and had lots of great family and friends there supporting Kellan and us, then some there in spirit! We had "Kellan's Buddy" team, and sold over 90 shirts! Almost everyone at his daycare got one, and they've been wearing them lots since then! Such a great show of support. The event as a whole sold over 500 shirts! Pretty amazing for our first year!
We celebrated Kellan's first birthday with family and friends at Fuddruckers. Kellan got lots of great gifts, spoiled as he deserved!
Morgan is busy with senior year happenings, looking at colleges, and work. She also is a huge help to me when Justin is gone, so she stays busy!
The 3 youngest and I went to Anaconda this past week. I taught a class in Butte at the hospital and my cousin Terri took care of the kids for me. Terri and her family just moved there from WI, and another cousin Shelley and her fam just moved there from Northern MT. It was great to be able to spend time with them both. It's such a pretty area, I can't wait to go back. Plus, Shelley is a nurse at the prison, so I can't wait for my personal tour!!
More excitement to come in our house-Shelby and Tobin are both getting their tonsils out in a little over a week! I'm so excited, esp. for Tobin, he has so many throat and breathing issues. Shelby is the strep queen, but Tobin suffers more with stuff that can't be treated, except by getting them out! Hopefully it all goes smoothly. I took most of 2 weeks off, Justin took surgery day and the next so we'll see!!
Check out Kellans videos!!

Kellan eating puffs

2010-10-19T07:34:00.000-06:00

Kellans 1st birthday

2010-10-18T21:48:00.000-06:00

2010-08-30T22:39:00.000-06:00

Tobin, Morgan, Shelby and Jenna loving the lake!
First day of school!

Our sleeping beauties!! This is why we got a king-sized bed, right honey??

Kellan lovin' his mum mum!

Boatin' baby!

Summer is over, school has begun. Tobin is loving kindergarden, loving riding the bus, but refuses to eat hot lunch! Oh well, not exactly great for them, so I just have to remember to pack one for him. Shelby loves school of course, and is happy with anything that comes her way! Morgan even somewhat like school this year. She is a senior and has several classes she really likes. Kellan and I are enjoying some quiet time together, but the day goes by soooo fast!! Shelby starts soccer this week, dance next week and youth group soon. Tobin starts soccer this week too, and a good friend of ours is his coach, so he's pretty happy! Kellan is growing and progressing, we are still working on sitting up, which he's getting stronger every day. He's also working on crawling and standing. We taught him to pat-a-cake, which was very rewarding, still is, every time he does it! He can pick up a little bit of food but can't quite get it in his mouth yet!

We made 2 trips to Ft Peck/Glasgow this summer as a family, and then Justin took the middle 2 kids one weekend and I took all the kids when I went to Havre for the fair. Kellan did pretty good on the boat, we found a life jacket that he could reach his thumb in, but I admit I cheated and unzipped it and took one arm out for him! He liked that better! THe kids had a blast boating, tubing and swimming! We enjoyed all our time with Justin's grandparents, and hope we have many, many more trips to see them!

The Buddy Walk is in full swing and gaining momentum, which I am loving. We have several potential sponsors, with my employer already committing to us! I love to see the love everyone has for our Kellan and other special kiddos! We have had a great response from family and friends, I think I have 40 ish to order shirts for on Kellan's team!! YAY!

Enjoy the pics!!

2010-07-10T22:04:00.000-06:00

So there I go again, being delinquent!! It has been a busy summer! I have been working on starting a support group for parents of children with chromosomal disorders which I have named Yellowstone county's "Extra" Special Kids, or YES Kids. The website is www.yeskids-mt.com. Check it out. Not alot there yet, but there will be!! Billings 1st annual Buddy Walk will be October 2, Kellan's first birthday! Go to www.buddywalk.org for more info.
Kellan made his first trip up to Ft Peck last weekend. He wasn't too fond of the boat, as he had to wear a life jacket that made it impossible to get his thumb into his mouth! But the fresh air lulled him to sleep and he took a great nap!!
Justin and I took Kellan to Denver in early June to see the physical therapist that specializes in Downs. She was very impressed with his progress. He still is fairly delayed, but continues to make great progress!! He still does PT and OT each weekly, so that helps alot, I never find enough hours in the day to do as much therapy with him as I'd like, Justin is much better about it than I!
Kellan also went on his first camping trip a few weeks ago. He did very well, he and I slept in cousin Shelleys camper. It was nice to have mostly the whole family on my mom's side together.
I posted a new video of Kellan on youtube, he's in the bath, it's pretty cute! Search my name and it should list all my videos.
Hope you all are having a great summer!!

Patience

2010-05-26T17:21:00.000-06:00

I have been very deliquent in updating my blog. It seems like there are not enough hours in the day to accomplish everything I want! I am not a very patient person, I want things done NOW! Kellan has been very good for teaching me to be more patient. He just takes his time and accomplishes things at his own pace. For instance, I remember back in January telling the physical therapist in Denver that I was frustrated that he was still having such a hard time holding his head up. I laugh at myself now, as he is almost 8 months old and just really getting to the point where he has good head control! So I have slowed down, learned not to expect too much of him, knowing he'll get to each thing, reach each milestone, just at his own pace. And that's ok. Then he surprises us by doing something really well, that we didn't expect. Like yesterday, his occupational therapist decided to try him with a straw. He won't be able to use a sippy cup, due to the tongue thrust that goes along with it, so he will learn to drink through a straw. He did amazing!! Like he knew just what to do! I was so proud of him!
He is still just a little guy, but growing more attentive every day. His stamina has also improved greatly. He can make it through a whole hour of therapy without complaining, and then not sleeping the rest of the day! He has mastered playing with his feet, and even sucking his thumb at the same time! So sweet!!
In other kid news---Shelby is about to end her 2nd grade life, and is in a play tomorrow that she is the story teller for and VERY excited!! Tobin is graduating from preschool tomorrow as well, and he is pretty excited to sing for us! Morgan is one year from graduating! Oh my! She is already talking about senior pictures! She has a job at the younger kids' daycare-Tobin likes having her there! Justin and I and Kellan are headed to Denver next week-Wed-Sun. Kellan sees the PT on Thurs then we are just going to hang out and relax!
Check out Kellans video-it's pretty cute!

5-22-10 034.AVI

2010-05-22T22:22:00.000-06:00

2010-04-08T20:53:00.000-06:00

6 months old baby boy

2010-04-08T20:26:00.000-06:00

We celebrated Kellan's half birthday last Friday by getting his pictures taken and dinner at Olive Garden, where he dined with his girlfriend Kaydence. I can't believe how time has flown by, and Kellan has grown so much. I uploaded a bathtub pic from last week and one from his first bath, at about 3 weeks old. What a difference!
Kellan is still working on holding his head up, this has been his biggest challenge thus far. He is getting much stronger and can push himself up on his arms while laying on the floor on his tummy. He is a rolling maniac, he will roll to both sides from his back to belly all the time, then push up on his arms and look around. I think he's doing his own therapy!! His biggest milestone the past couple weeks is that he is now laughing! Not too much of a laugh, but enough to tease me and make me make a fool of myself trying to get more out of him! He talks up a storm still, adding new sounds all the time. We started feeding him cereal, which he LOVES!! And he does sooo well with it, we were all pleasantly surprised!
Our little friend Jack continues his battle with cancer. He is in remission, which is great, but will still need chemo for the next 5 months or so.
Kellan has a doctor appt next week, so I am anxious to see how much he is weighing these days. We'll also check his thyroid again, the Ds increased his risk of thyroid problems, and just for mommy's sake a complete blood count! The following week he see an opthamologist. Children with Ds have a greater chance of needing glasses, so they get checked earlier and more frequently.
All in all things have been fairly quite in the Schye household. Morgan went to her prom last month, looking as beautiful as I've ever seen her. She continues to be my life saver with as much as she helps me out with the little ones. I don't know what I'd do without her. Guess I better not have any more babies, as she'll be gone in a year and there goes my helper! Although I'm not sure how she'll leave her little Kellan!
Shelby and Tobin went with Justin to Glasgow Easter weekend and had a great time with great-grandparents Maas. Shelby is starting soccer, has her first communion and confirmation this weekend. Tobin is gearing up for preschool graduation and hopefully kindegarden in the fall!
I hope everyone is as ready for spring as I am, and praying for warm non-windy weather~!

5 months old

2010-03-06T19:44:00.000-07:00

Tell me he's not the most handsome pilot ever!!

Chillin' with Momma

Check out that hair!!

I can hardly believe Kellan is 5 months old already! He had a doctor appt on Wednesday and weighed in at 11 lbs 11 oz! He is starting to wear 3-6 month clothes and outgrowing size 1 diapers. He is getting very strong in the neck and holding his head up fairly well, but still has some work to do. As soon as he can hold his head up, we'll start feeding him cereal. At the first of this month, as I realized Kellan was approaching his 5 month birthday, I had a big dose of reality, just how delayed he is. I'm usually very careful not to compare him to other babies, or even his siblings at this age, but it's impossible to not think about it sometimes. Kellan's occupational therapist, Linda, set up a mom's and babies play group for her clients with infants and toddlers with special needs, and that has been wonderful. One of my best friends from grade school thru high school, Suzanne, her little sister has a 2 year-old boy with tetrasomy 18, a rare genetic disorder that results in delays. Anyway, they come to the group so she has been great to talk to. She said the reality checks are a part of life now, and we just have to accept that. There is one other mom with a little boy with a brain malformation, and then Piper and her mom. Piper is the little girl just older than Kellan with DS. One other mom and boy that will come eventually are the ones that are in Denver, because little Jack has leukemia. I'm so thankful to Linda for setting this up for us. Next month we may even venture out to lunch first-God bless the restaurant we pick!!

I was directed to a blog by my husband, who found it off a friend of his wife's blog, and wanted to share it with anyone who would like to read it. Her name is Kelle, and she has a baby girl with DS...well, I'll let you all read it for yourselves. Warning: have a box of tissues handy. http://www.kellehampton.com/2010_01_01_archive.html

This so could have been written by me, well I can't express nearly that well, but the thoughts, feelings, are all so similar to my own. It's amazing how connected I feel to her, and I don't even know her. Some day, I will write Kellan's birth story.

Have I said how much I love this little boy?? He is so precious, growing and developing such a personality! Today I had a massage and he talked and cooed the entire 30 min!! We decided he remembered hearing the music and smelling the relaxing scent of oils, and was just plain happy. And he knew his momma was too!! Every time I get out the camera to take a picture of him smiling or video of him talking, he instantly turns serious and looks at the camera intently, silently! Like he's saying, no mom, I am too camera shy!

Today I got to spend the entire day with him alone. Justin's parents took Shelby and Tobin for the day, which was awesome and much needed! We took a long walk and just sat and cuddled. There's something about a baby that is so good for the soul.

Well, enjoy the pics, and Sarah and Aimee, thanks for visiting my site!!

Airplane trip #3

2010-02-07T17:44:00.000-07:00

Kellan had an eventful week starting with a visit to an Ear Nose and Throat doctor, which really was a waste of time. He had been having such terrible congestion that began when he was 2 weeks old and really got worse the beginning of January. Worse to the point he could barely breathe, especially at night, and I was not sleeping, scared he'd stop breathing. So one of the pediatricians consulted the ENT and put him on an antibiodic, sudafed, and a different anti-acid medicine. Within a few days he was way better-back to where he was before Jan, not 100%, but we'll take it!. Wednesday Kellan woke up with torticollis and tortipelvis-where his whole body is in a "C" shape. We pretty much left him alone, didn't try to straighten him out, and after a nap at Aunt Maries he awoke just fine. Thursday was our trip to Denver for physical therapy. I could very easily get sick of flying with an infant! Getting through security is a nightmare, thank goodness for other passengers! Shannon, the other mom I go with, and her baby Piper, and Kellan and I must be a sight! We just laugh. We rented a car, and getting that back and Shannon dropped off by the shuttle was slow so we almost missed our flight! Well, that and we stayed last at the hospital meeting a new friend. My mom works with a man whose grandson has Downs and was diagnosed with leukemia a few weeks ago. They are in Denver, so we went to visit Jack. He is one handsome boy and what a trooper!! He is my newest hero! We enjoyed meeting Jack and his mom and dad, and spent some time visiting. If everyone could keep them in your prayers that would be great!

Friday was not a good day for Kellan. Justin's morning flight was cancelled so Kellan stayed home with him while I went in to work for a couple hours. He called me saying that Kellan had been unconsolable, screaming, crying for an hour. That is VERY unusual for Kellan, who almost never cries. He got him to calm down some and brought him to me at a friends house. He ended up sleeping for a while then woke up just fine, so I don't know what his deal was, but glad it was over!!

Kellan has a doctor appt Tuesday, so we'll see how much weight he has gained, I know he's getting longer!!

The picture is of Kellan reaching for a toy-something he learned after our last trip to Denver. His PT was very impressed when I sent her this pic! Now he has moved on to learning to play with his feet! I'll post pic when he is able to do it!

BPT it is

2010-01-14T20:10:00.001-07:00

I talked with the doctor from Boston Medical Center last Friday and he wanted some additional information about Kellans episodes, which I emailed to him. He then emailed me Monday and said Kellan "almost certainly has" benign paroxysmal torticollis. That combined with my 99% sureness that he was never having seizures is enough for me to breathe easier and say with confidence that this is BPT. This is a relief for me in that I am glad these are not seizures. But the downside is that there is no cure or treatment for BPT. Dr. Rosman assured me that it almost always goes away by the time they are 3. He has not had an episode since Christmas Day. Dr. Rosman did say he would like to see an EEG during an episode just to eliminate that small possibility that these are focal seizures, which he wonders about because of the eye deviation during the episodes, which he said isn't typical of BPT, although on the blog Justin found, several of the parents describe similar eye deviation. Our local pediatrician is in agreement with us on this and just thought that if he begins having numerous episodes then we would try to go to the hospital for an extended EEG, like they suggested in Denver. I am so grateful to Dr. Rosman. For him to have helped us like this is truly amazing, I know how most doctors are!!

So Kellan has been off his anti-seizures meds for a couple weeks now and is doing really well. Cooing more, smiling more-I even got a picture! I took him to Denver last Thurs to see the physical therapist that specializes in treating kids with Ds. She is amazing!! She got Kellan to reach for a toy! I was so proud of him! I videotaped most of our therapy so Justin could watch, and so I could remember what she wants us to do with him. She would like to see him monthly until he walks, then much less frequently, like every 4-6 months. We'll have to see with insurance and all, but I sure would love to take him to her every month.

Justin and I meet with the genetic people from Shodair next week. Not sure what all they'll tell us, but should be interesting. I got on the computer at work and printed the chromosome sheet they did, and sure enough, there it is, that little 3rd one on #21. Weird to see it.

I hope you enjoy the picture. Kellan is a great cure for a bad day!!

Kellan's awakening

2009-12-28T20:31:00.000-07:00

So it's been almost 2 weeks since we've started weaning Kellan off his anti-seizure med, and the difference in him is amazing! He is AWAKE so much more, more ALERT when he's awake, SMILES frequently-several times a day, and COOING!! It's so nice to see his personality coming through. I admit I get a little weepy every time he gives me a big smile! He is so sweet! And he is still sleeping his 7-9 hours at night, which I hear is fairly common with Ds. Christmas night he had an 'episode' that lasted about 2 hours. I got some pretty good video of it. We sort of discovered that it seems like when he starts the head tilt we can almost elicit the seizure-like activity. He had the head tilt again yesterday and this am, but we let him be tilted, didn't try to straighten him, and it passed and he relaxed quickly. I had called the pediatrician on call Fri. night, who happened to be the one we went in to originally the first time this happened, on the off chance she thought we could come get an EEG in a timely manner. She didn't think that would happen but she wanted to call Denver to see if they wanted to re-load him on the seizure med. I told her we didn't want to do that at this point, and she agreed that was ok. She was going to see today if we could put a plan in place so that we could bring him in when he starts having one to get an EEG during it. We'll see what happens with that. I am still 95% convinced he has BPT, I just wish we could get an EEG to prove they aren't seizures, or are, if that's the case. I did find a doctor in Boston that possibly has some experience with BPT and emailed him. If I don't hear back from him I just might schedule an appt with him and catch a plane to Boston!

Christmas was very nice here. Justin's family was here, cousin and fam from WI, parents, grandparents, and my mom, dad, sister and niece all came for dinner-21 in all! I only had to do the turkeys, everyone else pitched in on the rest! It was a wonderful dinner and so nice to spend time with family we don't see very often. The really nice thing for me was that every time Kellan was hungry he and I could escape to the bedroom for some peace and quiet!

Today was my first day back at work. 12 weeks sure flys by!! I missed Kellan, but thankfully Justin was off so he brought him up at lunch for me to snuggle!

I hope everyone had a wonderful Christmas!!

One last thing-Kellan has taken to sucking his thumb the past couple weeks too!! It's sooo cute, but I really don't want him doing it!

2009-12-15T17:48:00.000-07:00

Kellan having his EEG.

Back from Denver

2009-12-15T15:19:00.000-07:00

Wow! What a trip to Denver! Kellan and I flew out Sunday night after his Baptism, which went great! I never realized how hard it is to fly alone with an infant! Thanks to my new friend Shannon's husband though, he was also on the flight and helped me! We got into Denver around 6:15 and my friend Kyle-Anne and her husband picked us up from the airport. The first thing she told me was that she cancelled her trip to Billings the next day so she could help us get to our appt, etc! How thankful was I!! Monday am we got to Denver Children's at 8:30 for Kellan's 9 am EEG. When he woke that morning he was doing the posturing with his head that was the questionable seizure activity, and I got a pretty good video of it on my cell phone. Of course he didn't do it during the EEG! He hated the whole process of attaching the electrodes (30 some of them!) and cried the whole time, which he NEVER cries! He was hungry and tired, and I finally was able to feed him but couldn't hold him, and he only ate about an ounce and fell asleep.
We got to the neuro office and he ate a little more, then puked on me, quite a bit. You'll see why I mention this later. We saw the neuro nurse practioner first and she spent about an hour with us, taking history and then examining Kellan. During the exam he again began to posture, but again was awake, alert and not obviously seizing. He did it for quite a while with her in the room. Then the doctor came in with the NP and kind of did the same thing-listened to the NP tell her the history, etc. They had had a epileptologist look at his EEG, and he said it was neither normal nor abnormal! What??!! How the heck does that happen? No seizure activity, however, so that's good. I did tell her how he has rolled several time, and she asked if he did it while arching his back during the posturing, which I told her no but she maybe didn't believe me. He proved it to her by rolling from his back to tummy on the exam table! She was very impressed with how strong he is but did admit that he is still low tone and delayed. I told her he sleeps 18-20 hours per day and I believe that is partly why he is so delayed, he's not awake long enought to develop and gain strength. I believe that his sleepiness is may be partly due to the phenobarb. So we talk about reflux and Sandofer's syndrome, which is commonly mistaken for seizures, and she brings up a somewhat new possibility-Paroxysmal Torticollis (see my favorite links). I haven't had a chance to look much up with it yet, but Justin did and says some things are very familiar. The doc says they associate this with migraines in infants. Obviously, they don't know when a baby has a headache, but they do know that small children get vertigo when they get migraines and sometimes will cock their head to either side, no preference, to alleviate the pain and or vertigo. The doc asked if anyone has migraines in the family, and yes, many do, me included. Vomiting also goes along with this, and Kellan will frequently "spit up", but not very often really "throw up". Yesterday he did several times. He also postured most of the morning. Related? I don't know. The doc did watch the video I tookl earlier and she that made her lean farther away from seizures. So after all of the doc's exam, she decided she wanted to do a 4 hour EEG, to see if we could catch these episodes and rule out seizures. And if he didn't do any of it during this EEG, they would want us to come back for a 3 DAY EEG!! She said he makes a good case for all the above, so we need to try to rule out the worst. So Kyle-Anne got to run us to a whole different hospital for the EEG, which thankfully was close to her house so she could go home while we were there. OF COURSE, he did none of the posturing the ENTIRE 4 hours!! He did do some of the smaller things we have noticed, stiffening his arm, etc. The tech told me he was having some weird electrical activity, especially when he was nursing and falling asleep, but not seizures.
After all that, Kyle-Anne took us back to her house and made a very nice dinner, then we headed back to the airport. The flight home was good-the airplane was full and we were in a middle seat between a large woman whose butt was partially in my seat, and a young-ish guy. Kellan was hungry and needed to nurse and I'm thinking my boob is going to be on one of these twos lap! The guy agreed to trade me places but I told him I'd try to get the flight attendant to move me first. They did, we got a whole 3 seats to ourselves in the back of the plane!! By the time we got home it was 11 pm, I was exhausted and had a headache from hell. My mom was here and helped me feed Kellan and stuff before she went home. AAhhh-my nice warm bed!
So this afternoon Amanda, the nurse pract., called with EEG results. Again, she had the epileptologist look at it. Again no seizures, even when he did the arm thing. But he does have epileptiform waves-electrical activity that is not normal and puts a person at higher risk for having seizures, but does not necessarily mean they WILL have them. In patients with these waves they do not medicate, they wait and see what happens. This other doc recommended weaning him slowly off the phenobarb (YEA) and see what happens. I honestly would have probably taken him off it even if they hadn't given the OK, but I'm sure glad they did! It will take 3 weeks to wean him, but I'm so happy we can! Now if he has the big episodes of posturing before Jan. 7, then they will set us up for a 3 day EEG when we go back to Denver for our PT appt. Let's hope not. I can't imagine doing that!
Let me just say the NP and doc there are amazing! Very thorough, attentive, compassionate. I wish I would have had the afternoon to explore the hospital and check out the Special Care clinic-the Down syndrome clinic, but there's always January! From what I saw of the hospital, it was great-very colorful and kid oriented, of course. I highly recommend their services if anyone ever needs it. From the valet to the receptionists to the doctors, very exceptional.
I think that about covers it. We will see about working Kellan up for reflux, or just trying zantac when he stops the phenobarb. I hope everyone is well and ready for Christmas! My kids are very excited, esp because their great-grandparents and cousins on Justin's side are coming!

Trip to Denver

2009-12-04T18:30:00.000-07:00

Kellan has an appt with the pediatric neurologist Dec 14 in Denver, with an EEG first. I had Justin call and verify the date and times, just to be sure! Kellan and I are flying down on Sunday. I have a friend who lives right in Aurora so she is very kindly picking us up from the airport and letting us stay the night with her. Hopefully Justin will be able to work something out to be able to be there too, we'll see. Kellan is also being baptized on the 13th, with my cousin Wendy and her husband Dave as Godparents.

I am also trying to prepare for Christmas. Shelby REALLY wants a Nintendo DS. I explained to her that they are very expensive and we'd have to see, and she went to her room and gathered up all her money to give to me to use-$17.62!! She was so cute!! I did a little shopping tonight. I found on another mom's blog a list of good toys for baby's with Ds, so I ordered some things off the internet, such an easier way to shop! Justin is gone this week, then home next and then gone again for a week, so it makes shopping time fairly sparse.

Kellan weighed in at 8 lbs 5 oz at his appt on Tues! He got 3 shots, which covered all but 3 of the 2 month recommendation. I opted to wait on the polio, hep B and rotavirus. He'll possibly get the polio and rota at his visit next month.

We got our Christmas tree yesterday. The kids are very excited to decorate it, so we'll start tonight. It's not as much fun without Justin around, seems empty. He got to spend a few days in sunny Key West. He's going to miss both of our work Christmas parties, but will be here for Tobin's Christmas program so that's good.

Check out Kellan's hair in the one pic-it is so curly right after it's washed!

Friends

2009-11-27T21:42:00.000-07:00

My Holland, My Italy#links

I found this on a fellow Ds mom's blog, and it really touched me. Follow the link to read.

7 lbs 15oz!!

2009-11-24T22:43:00.000-07:00

Wow! Kellan must be gettin' some good milk! I hope it is coming off me ounce for ounce that is going on him!! I should hear from Denver tomorrow about getting him in to a neurologist. I have spoken on the phone twice with a gal who has a 3 month old baby girl with DS (we are going to meet them tomorrow!) and they had to go to Denver for the baby (Piper) to have open heart surgery. Shannon-the mom-told me about a physical therapist there that literally wrote the book on gross motor and DS. They are trying to start a DS clinic there and recruited this gal to help get things started. Sooo...now I'm trying to get Kellan in to see her too! I've always thought you should go to the best! Hopefully he can see a speech therapist also. I know it seems crazy to see all these therapists when he does nothing but eat and sleep and poop, but this video we watched talked about how you have to help kiddos with Downs learn things the right way, like speaking that starts with cooing, eating, rolling, sitting, etc. Kellan has already mastered the rolling thing-he does both back to belly and belly to back!! We just want to make sure we stay on top of things, without going overboard, of course! And by the way-he smiled at me! Love that little guy!

no neuro appt

2009-11-20T22:18:00.000-07:00

So I screwed up Kellan's neuro appt, it was supposed to be Thurs and I thought Fri so we showed up a day late. They said they couldn't get him in, which the doctor comes from Seattle and was flying out this afternoon, so I can't really blame them for not being able to see him. Still, it sucks. I called the pediatrician office crying and one of them called me back and said not to worry about it. She said we'd talk to Kellan's doctor on Monday and see what she wants to do. Justin is thinking he just wants to take him to Denver as soon as possible, I'm on the fence. Kellan is doing really well. His last weight was 7 lbs 5 oz. He is eating more and more, esp at night. Sometimes he'll down 5 oz! His awake times are getting more frequent and lasting longer. He smiled at me twice Thursday! Everyone else is good too. I talked to a mom who has a 3 month old daughter with Downs that lives here in Billings and we are going to meet Monday. I'm looking forward to meeting her and the baby and exchanging stories/advice/whatever!

Daddy's Home!!

2009-11-15T20:10:00.000-07:00

After a long week of single parenting, Justin got home Sat. am, just in time to see the older 3 off for the majority of the day to birthday parties, etc. I was so excited to be "free", I headed shopping, getting a head start on my birthday!! Kellan enjoyed an afternoon of Daddy and the Griz. Kellan has had a good week-eating, sleeping and pooping! Throw in a few roll-overs, and that's his excitement! Our friends next door came over one evening and he rolled 3 or 4 times for her, until he got too tired and had enough. He is such a cute, sweet little pumpkin! 6 weeks old and he has my heart wrapped around his little finger. As busy as life is now, I can't imagine what it was like without him.

Another good day

2009-11-10T19:37:00.000-07:00

Kellan had another good day today. We started working with an occupational therapist on our breast feeding issues. She was very impressed with his suck and how strong he is in general. He even rolled over again for her! He does not like tummy time! She will come again next week. We saw the pediatrician yesterday and he had gained another couple ounces. She was trying to get us in to see the pediatric neurologist next week that comes from Seattle to see patients. His schedule was full and the office here wouldn't budge on letting us in, so she called him in Seattle and asked him to squeeze us in so we wouldn't have to go to Denver. He said he was happy to! I am anxious to see what he has to say. In the meantime, we are managing through each day with Justin gone. Not exactly easy, but not too bad either.

Home, Sweet Home

2009-11-08T20:03:00.000-07:00

Kellan was discharged from the hospital today. He had a good night last night, we moved out of the PICU last evening, which I thought meant we'd leave the monitors behind, but no. We took them with us, but not the nurse to monitor them! So that left me to watch them, and listen to them alarm every time Kellan moved. Not a very restful night. The room we moved to was right outside the PICU and there was a window between my bed and the crib that the other baby in PICU was in. I could hear her crying off and on all night, and felt so bad for her. Her alarms went off frequently, she is a very sick little baby-11 days old. I just talked to her mom and they are flying her to Denver now. They don't know what is wrong with her. I feel so bad for them. We are so lucky to have gotten to come home with everything being OK. Kellan has been awake and alert for the last 2 hours, so nice to see his blue eyes looking around! He hasn't had any more spasms or spells or whatever it was that happened Friday. There is possibly a pediatric neurologist that comes to the specialty clinic here so we'll find out more tomorrow about that. Thank you to everyone for prayers and support. Please add Kellan's former PICU roomie to your prayers.

Out of PICU

2009-11-07T22:29:00.000-07:00

Kellan's MRI and EEG both came back normal, which is great news. Although now we are still left with more questions than answers, which is frustrating. The doctors here want us to go to Denver in a couple weeks to see a pediatric neurologist. I hope that will give us some answers. Kellan had a good day. He was mostly sleepy, but woke up to eat every few hours. He even christened the PICU and showed everyone what a great urine stream he has!! He is taking anti-seizure meds and will stay on them until further notice. We should get to go home tomorrow. I am not looking forward to Justin having to be gone all week for simulator training in Dallas, but he can come home quick if needed, and I'm sure everything will be fine. We have such great support here and we appreciate everyone's thoughts and prayers.

PICU and seizures

2009-11-07T14:22:00.000-07:00

Kellan was admitted to the PICU yesterday afternoon with possible seizures. Justin and I noticed him having what looked like muscle spasms and cocking his head to the left. We took him right over to the clinic where they called an ambulance to take us to the hospital. He had an EEG of his brain then was given a loading dose of an anti-seizure med that then made him very sleepy. He had a good night, and thanks to 1 to 1 nursing, I got some sleep too! He had an MRI of his brain this am and did so well with it he didn't even need sedation, which was good. We hopefully will get both test results later this afternoon. There is no pediatric neurologist here so the EEG had to be read by one in Denver. They will also have us go to Denver in a couple weeks to see a neurologist. For now, Kellan is just real sleepy but waking to eat. Please keep him in your prayers. I will keep this updated as much as I can.

2009-11-04T12:03:00.000-07:00

Kellan had his pediatrician appt yesterday and was up to 6 lbs 6 oz, 4 oz in 4 days!! YAY! Today we saw the cardiologist, and his patent ductus closed, another HUGE YAY!! the other is still a little leaky but no big deal, he never has to see the cardiologist again! He seemed very apprehensive at the cariologists office, sucking away on his paci and looking around like "what's going on? Don't poke me!" It was a painless visit. His EKG needed 15 leads put on his chest, which is tiny, so he looked funny with all that. Justin took pics so I'll post them when we get them uploaded. He was really alert when we got home, looking at his black and white toy for some time. I laid him on his stomach for some "tummy time" on the loving room floor and he rolled back over to his back!! No joke, and he was completely on his abdomen when I laid him down! He's a strong little bugger!

2009-11-02T21:36:00.000-07:00

Our little pumpkin

2009-11-02T20:59:00.000-07:00

The last 4 plus weeks have been extremely busy in the Schye household. It seems we are at the doctor's office twice a week. Kellan was jaundiced pretty bad at his 4 day check up, so we spent the next 24 hours almost force-feeding him to get his bowels moving and excreteing the bilirubin. He was and still is a very sleepy baby, which I have since found out is typical for babies with Downs, would have been nice to know 4 weeks ago! I thought he just was content to sleep! He had been poked for blood some 20 times in the hospital for the genetic testing so I was determined that he was not going to have to be poked every day the rest of that week so we really kept on him, making him wake up and eat every 2-3 hours. It worked, he pooped like 7 times in the next 18 hours! His poor little heels were a mess of scabbed over slits, where they had poked for blood, not to mention his ankles, hands, & arms. Kellan had been doing well breast feeding and gaining weight for the first 2 1/2 weeks or so. On October 15 he weighed 6 lbs 8 oz. I had always thought he didn't suck as well as Tobin when he was nursing, but thought since he was gaining weight all must be well. On October 26 I thought his skin on his thighs looked loose, but then thought I was just being paranoid, but then Morgan mentioned she thought his arms looked loose too. So I took him in the next day and weighed him. He had lost 11 oz! So the pediatrician had me start pumping and fortifying breast milk for him, at which time I discovered I wasn't producing enough. Babies with Down's typically have low muscle tone, which Kellan really doesn't over all, but obviously his mouth and jaw muscles are a little lacking. She wanted him to gain 3 oz by that Friday, so again we worked hard, and he was up 4 oz, with one tired momma. He sees the doctor again tomorrow so we'll see how much more he has gained, he still seems so skinny and tiny! We also see the cardiologist this week again for another echocardiogram. He had one in the hospital when he was about 18 hours old because about 50% of babies with Down's have major cardiac defects. Thankfully Kellan didn't have any major problems, just 2 minor. One is patent ductus arteriosus, which usually closes at or shortly after birth so it may have closed after the echo. If not, then he will have to have a heart cath when he's one to plug it, as long as he doesn't have complications from it sooner. The other is another opening that probably won't be closed but is not a big deal and they just leave open. Also this week Kellan will be evaluated by Early Childhood Intervention to see if he has any immediate therapy needs (which I'm hoping we can address his low muscle tone in his mouth). This will also set us up for the next 3 years. Lastly, we have Justin's birthday! It will be a busy week again. Thankfully Justin is off all week!
We are eternally grateful to all of our family and friends who have supported us through the past 4 weeks. We wouldn't have gotten to this point without you. If anyone had told me that I'd have a baby with Down syndrome and be accepting of that fact this soon, I'd have said they were crazy! It's hard to describe the emotions we have gone through, really the grief process, but there is a short essay that really says it all. Follow this link to read it, if you wish. www.our-kids.org/Archives/Holland.html. So we are in Holland, and we love Holland just as much as we loved Italy.

2009-10-29T19:56:00.000-06:00

Kellan Michael Schye. Born October 2, 2009 weighing 5 lbs 13 oz and measuring 18 inches. Being the final addition, he rounded out our family at 2 girls, 2 boys. Our joy was somewhat overshadowed by my suspicion that he possibly had Down syndrome, which was confirmed 7 days later. The diagnosis didn't make us any less happy to have him, just made us worry about things we never thought we'd have to worry about-heart defects, intestinal problems, and a whole host of other concerns that go along with having a baby with Trisomy 21, Down syndrome. For those that don't know, Down syndrome occurs when there are 3 copies of the 21st chromosome instead of just 2 like there should be, for what reason is unknown, although there are several theories. I won't go into too much detail about Down syndrome itself, there are lots of great websites you can visit for that, like http://www.ndss.org/, my fav. My reason for creating this blog is partially for keeping family and friends updated on Kellan's progress, but mainly for myself, to keep track of things, like journaling, and to give myself an outlet.
At the present moment, my little peanut is demanding my attention so I shall continue later!

2009-10-29T19:47:00.000-06:00