You Will Want to Help

I just know you will want to help. Once I tell you about them, you will want to join me in helping them. You will feel eager to be God's hands and feet here on earth.
My last post, was almost a year ago. Shortly after that post we moved to another state. I was told there was another family here that had adopted many children with DS, some from over seas. I thought they must be a RR family, who else adopts kids from overseas with DS!! I eventually got their names and contacted the wife, Jane, on Facebook. Indeed, they did have many children with DS, one biological, 3 from U and 3 through domestic adoption. The wife and I messaged back and forth. They did not adopt these kids through RR. They brought their first child with DS from U home in 2001. Before RR.

I should mention this family lives 1 mile down the road from us! We invited them over for pizza one Friday. As soon as her husband, Dave, walked in the door he scooped up Alanna and asked where she was from. I told him U, and he asked what region, I told him K. He said they do mission work, in a level 4 right outside of K, the very institution Alanna would have gone to when she was 4. God is amazing like that, weaving people together. They shared with us that they were starting another adoption to adopt a little girl from that institution. She is 10, and tiny of course, about the size of a 4 year old.
As months went by and we got to know each other I have simply fallen in love with this family. They have a heart for children with DS and for the country of U.
One of the Daulton's biological children has Down Syndrome. Tommy was born in 1984. Of course Down Syndrome changed them, changed their lives and their hearts. Tommy calls himself "the awesome biological child" and indeed he is:) He planted the seed that quickly grew into a passion for Jane and Dave. In 1990 they adopted Ben domestically. Ben and Tommy are the best of friends.

In 1995 they adopted another child with DS. Her parents, a well educated couple from Ethiopia, living in the United States at the time gave their daughter the ultimate gift by finding her a loving family. They knew she would be accepted and have excellent health care and opportunities she would not have in their home country.
In 1998 sweet Daniel became part of the Daulton crew. Precious boy with blonde hair and blue eyes, Stuck in the hospital with health problems, his new parents diligently by his bedside. Daniel was able to come home for 10 months before going to heaven. The Daultons loved him fiercely. This was the second son they had lost. One of their biological sons had passed away suddenly and tragically at the age of 4. Some would have grown stone hearted, but not Jane and Dave. The tears for their boys are always close to the surface of their eyes, but they carry on. In 1999, they did their final domestic adoption, Lani joined the Daulton crew. Ignorance about DS does not just happen in other countries. Lani had been neglected by the very people who should have helped her grow.
I really should mention that Dave is an adoption attorney. He has helped many families adopt children domestically and from varying countries. Some with DS. Jane and Dave have a heart for mission work as well, and in 1998 they asked a question that I believe opened the door for orphans with DS in Ukraine. While doing mission work for his organization SENSE, in Ukraine and assisting people adopt, they asked "where are the children with Down Syndrome?" "Nooone would want them", was the answer they were given. Jane and Dave said "we would" And so started their journey to their first adoption in Ukraine.
You would never guess who their facilitator was! A missionary had taken several young people on to train them in adoption and how to do business with Westerners. One of those young women,Yulia, would go on to be one of the best. I say Yulia had to of been a child herself back then. Now Yulia will tell you that her heart has been changed by these children. Thanks to the Daultons and the many Reeces Rainbow families that she has facilitated adoptions for.

They committed to 2 little boys, those little boys are now Jack and Philip. When they got to Ukraine, however, the boys' paperwork was not ready. There had been a miscommunication. They were told to go to another region, that they had children with Down Syndrome who were registered. They did, and they brought home Anya from Vorzel. From what I've heard Anya chose them, she was not a wall flower. To this day Anya is spunky, a typical teenage girl in everyway. Anya has traveled back to Ukraine twice with her parents on missions trips. What better way to show U the potential all children have.
They went back in October 2001 to bring home Jack and Philip. With them they took equipment for the children with special needs, something they have continued to do through the years. Jack was able to come home, Philip still had a paperwork hold up, and they would go back for him in June of that very same year. Both boys were 4, and Philip was set to be transfered to the institution, but the Daultons begged, and they kept Philip at the baby house till they could get back for him.
Of course they said they were done adopting. They went on helping others adopt from near and far. While being interviewed on CBN, Jane was asked what her goal was. She said, "to change the heart of a country." Between Jane and Dave, they have made over 25 trips to Ukraine. Their non-profit Father's Heart, continues to work with children with special needs, and to educate Ukraine about Down Syndrome. Dave and Jane introduced Pastor Sasha of www.almazgo.com to the plight of special needs orphans. Pastor Sasha, his wife and their church family has a passion for orphans and has been working with them for years. Now that they know more about the orphans with special needs, they have decided to partner with Father's Heart, to continue missions with special needs orphanages. You can read about their last mission trip this past summer here: http://almazgo.com/news/summer-2012/ Together they hold conferences to help educate and equip parents, health care professionals, churches, etc... in Ukraine. At their last conference they had over 200 people from Russia, Ukraine, and Belarus.
You can read about one of their conferences here http://www.fathersheartorphanministries.com/pdf/2011%20Ukraine%20Conference%20Program%20in%20pdf.pdf
The institution they are adopting from this time is one that they have worked with many times. The director has an open heart, and together they have greatly improved the conditions there. They pray that they will become an example for other facilities of children with special needs.
The Daultons have met the sweet girl they are adopting. They intended to adopt 2 girls, both they have met several times while on missions trips. There was a problem with the second girl's paperwork. They cannot adopt her. She is not registered, and it is not possible to get her registered quickly. Her baby orphanage did not register her, she was seen as unwanted, not even given a chance.
The Daultons need to raise about 12,000 in 5 days. WE can do this. Dave and Jane have poured so much into their children and into missions. I could not stand to think that we, God's people, would not rise up for them.
Go here to make a tax deductible donation:
http://reecesrainbow.org/?s=daulton

Almost 2 years Old!

I can't believe I haven't blogged in 2.5 months. Actually I can, because I thought of it often, just never did it.
In un-Alanna news, we are moving!! As in RIGHT now we are moving. We are PCSing to Langley AFB, VA. I am so excited. That has always been at the top of my list.
We are in between places right now. Trying to buy a house. Just LOTS going on.

Of course what you came here for Ms Alanna.
I cannot believe my baby will be 2 in a couple weeks! She has grown so much in the barely 8 months that we have had her. To think she didn't know how to smile, laugh, reach up to be held, cry for attention, etc...

Let's see, how about a Stimming Update first!
I realized it had gotten much better, but I didn't realize HOW, much better till my FIL said to me the other day "she doesn't hit herself in the head anymore does she?"
Well, she does, but I would say about mmm, maybe 10-15% as much as she used to. No joke! She did become obsessed with bouncing the back of her head off the couch cushions for several months, but that has eased up quite a bit.
I contribute this mostly to her knowing to come to me when she wants something so she is  not as stressed as before. Also, she is just too busy! She went from having little interest in toys, unless we sat them right in front of her and played with her to her dragging out all her toys to play everyday, for lengthy periods of time.
My goodness, as a I typed that tears run down my face. She is no longer trapped inside her little neglected body, too emotionally neglected to know how to deal with things. She is so full of life now!
People who have down syndrome are know for not liking change and she def displayed this when we went on a little trip just her and I to Ohio to visit my sister and my new nephew. First she had a little stomach bug, but then she was just all over the place emotionally. Refusing to eat, screaming at even the sight of food, every meal except the one she slept through was spent with her screaming.
She does display some self harm behavior when she gets upset, which tears at me. She will scratch and pry at her mouth, she pulled her own hair, etc...
The minute we were back home, she was back to her old self. Like someone flipped a switch!

I know that trip was hard for her, most likely combined with the stomach bug she had. But we are always on the go, so I think the best thing is just to keep her as used to it as we can. We have been at my inlaws for a week now, and she is doing really well.

I'll post a few pics and update more the next couple days.

21 Months Old!

My Lanna girl is 21 months old today. It makes me sad she is getting big too fast. The changes I see in her are amazing to me. Every single one makes me so emotional.
She is exploring her environment sooo much more. She crawls all over the house. We used to have to put her toys in front of her. Now she goes over and picks out the ones she wants and drags them over to play. She is starting to have a sense of humor. She has her favorite Baby Signing Times DVD and when I put it in she gets so excited.

She's getting a little sense of humor. She likes to hear me laugh, so she gives me this big cheesy smile. It cracks me up everytime. I looove it. She does it to other people to like her therapists. Little Ham.
She is pulling up on everything and cruising! She signs eat. She says Mama!! (not regularly but at times)
Her favorite place to be is in my lap. She pulls to be picked up then turns her little self around to sit down. We had friends over watching a movie and she sat in my lap the whole time.
When she got restless in church service this past Sunday I went and took her to the 2 year old (the 1 year old room was empty, I guess everyone turned 2) Normally this would just trigger a lot of stimming. The room was packed. She crawled right over to the toys and pulled some toys off the shelf to play with. I was so proud and happy for her!
This morning she crawled into the dining room, normally she goes in there to lick the chairs, haha. I could hear her, I didn't hear any stimming just babbling. A couple minutes later I went in there and this is what I found

My Smart Head Banger

This chick is too smart. Her favorite stims have to do with her head, mostly hitting the side of her forehead. Sometimes very hard, mostly when she is tired or something is wrong. Her new stim. (overall her stimming has lessened) is bouncing her head off the couch. She sits with her back to the couch and bangs/bounces the back of her body off the couch cushions. If she is in front of the arm of the couch it is hard and she cries, then scoots over to where the cushions are, LOL. She tests banging her head on other surfaces, like walls, tables, floor, but she does it very slowwly and only once then she decides, nope that will hurt. Thank God!! I let her bounce her head off the couch because it's much better than any other surface!!

A Few Of Her Favorite Things

It's somewhat challenging to find toys that are easy enough for Alanna to manipulte in a manner that will keep her attention. So I thought maybe you guys might want to see some of her favorites and maybe your kiddos would enjoy them as well.

I picked this up at a nice toy store, I think it was 12.99, they have it on Amazon for a couple bucks cheaper. I love amazon! You fill it up with water, there are little floating fish. She can hear and see the water splash as she hits it, she loves it.

http://www.amazon.com/Earlyears-Fill-Fun-Water-Mat/dp/B000E82WRM/ref=sr_1_1?s=books&ie=UTF8&qid=1314401898&sr=1-1

Another favorite is her Leapfrog activity table. I love any Leap Frog products, they are well made and engage the children well.

http://www.amazon.com/LeapFrog-Learn-Groove-Musical-Table/dp/B000ETRENI/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1314401983&sr=1-1


This ball popper toy, she loves!! What kid wouldn't. But we have to be right there to pick up the balls that pop out and to push the button to make it go, it is too hard for her. She knows to push buttons, but this one is too hard.
http://www.amazon.com/Hasbro-8490-Playskool-Busy-Tumble/dp/B000GB4EAA/ref=pd_sim_t_37

Apartly if you are that determined, you can buy this modified one.
For a hefty price of course.

http://www.amazon.com/Enabling-Devices-Adapted-Air-tivity-Popper/dp/B004XJ4MX0/ref=sr_1_68?s=toys-and-games&ie=UTF8&qid=1314402591&sr=1-68

We have a regular Fisher Price xylophone, but she doesn't hold onto the stick to wack it. This one she I linked to she loves!! The keys are very easy to make go down, and it's fairly loud.  

http://www.amazon.com/Little-Tikes-Baby-Tune-Piano/dp/B001QXDIVS/ref=sr_1_17?s=toys-and-games&ie=UTF8&qid=1314402350&sr=1-17

I'm not sure what this toy is called. But it's for young babies to lay under and hit and play with the toys. She loves going In things, so she goes under it and places, or rocks back and forth.

She loves this Baby Einstein Ball.

http://www.amazon.com/Baby-Einstein-30974-Bendy-Ball/dp/B001UF8BL4/ref=sr_1_1?ie=UTF8&qid=1315360267&sr=8-1

And this ball popper, it is easy enough for her to push down. She has another one just like it that she can't do.
http://www.amazon.com/Hasbro-8490-Playskool-Busy-Tumble/dp/B000GB4EAA/ref=sr_1_12?ie=UTF8&qid=1315360356&sr=8-12

Her number one favorite toy is her Johnny Jump Up, I picked it up at a consignment store for 12.00, the BEST 12.00 ever spent.
It is great for her sensory needs. The things she does in there are amazing! She sticks one foot to the floor then uses the other to go around and around, then lifts her legs to spin around. etc...
She is outgrowing it. I have been looking at indoor swings, does anyone have one they love?
I highly recommend the Johnny Jump Up with the tray, it provides a little buffer between them and the doorway.
Like this one

http://www.amazon.com/Graco-Bumper-Jumper-Little-Jungle/dp/B000WJLKQM/ref=pd_sbs_ba_1

What are your kids' favorite toys?

Eye Appointment

Alanna's eyes cross. They both cross in, but not necessarily at the same time or to the same degree, and not all the time. The doctor looked at her eyes, he agreed "yes, I do think they are crossing" mmmk.
So they gave her the drops to dialate her eyes, we waited 20 minutes then he took a lense and a light to look and check for refraction to see if she is farsighted. None of which she appreciated.
He explained all kids are far sighted, but kids with with disabilities such as Down Syndrome are more prone to it. He said the plan would be for her to wear glasses all the time. Until sometime when she is 5,6,7, 8, or so she will outgrow the farsightedness. Her eyes are crossing in an effort to see, so supposedly the crossing will stop with the glasses because she will be able to see.
He said he wanted to see her back in 1 month. Of course there is an eye shop attached to his office, so he gave us a coupon and sent us on our way. They tried 2 pairs of glasses on her, both metal frames, which seemed very unrealistic to me, the glasses will be over 200.00 and I can see her reaching up and breaking those in about 10 seconds flat. So I am researching our options.
As I was about to leave the room, the docotor says he wants to ask me something personal. "Why in the world would you want to adopt a 4th child when he already have 3" (he had asked earlier if she was my only child) My big response was "because we wanted to, and we could, so we did"
I did not get the vibe this is what he wanted to ask me, I think what he was getting at was why did you adopt a child with special needs when you have children already. He went on to say he just didn't understand, etc... Why would anyone want so many children? He said he had 3 and that my kids must just be better behaved than his because it was hard. To which I said "must be, my kids are pretty amazing"

www.solobambini.com
www.miraflexglasses.com
www.tomatoeye.com
www.specs4us.com



Other useful sites

http://leahlefler.hubpages.com/hub/Kids-Glasses-Choosing-Eyeglasses-for-Childrens


http://littlefoureyes.com/photo-gallery/

18 month Check Up

Alanna had her 18 month check up several days ago. Yes, she is almost 20 months. My intention was to make her 18 month appt when we moved so it could be her first appt with her new Dr but of course we never moved.
Alanna is amazingly healthy. Her heart diagnosis that we recieved overseas was an extra chord (no big deal, like an extra finger). And a small hole that has closed up, no murmur can be heard. But I really wanted her checked out just to give her the all clear on her heart, so she has an appt for an ECHO next Friday.
I find it interesting that both times I've taken her to the dr. for her routine check ups they hand me the same sheet they hand me when I take my other children. This just seems odd to me. I'm not overly sensitive, trust me, but couldn't there be an alternative with real information on children who have Down Syndrome? Does everyone's elses doctors do it the same way?
Also, I had read about the Down Syndrome Growth Chart. Our children with designer genes tend to be smaller, so there is a custom growth chart. The doctor didn't refer to that, he used the typical growth chart. Again, it does not offend me, but as a mother wouldn't I want to know how my child is doing in comparison to children like her. Again, I'm not seperating her. But how would you feel if you took your child to the doctor and they used a growth chart for children with Down Syndrome. Would that tell you anything about their development?
My Lanna girl is 90th percentile on height
                            50th percentile on weight
                    and  75th for head cirmcumference
That is on the Down Syndrome Scale, I forget what the dr said about the typical scale.
The Down Syndrome Scale can be found here www.growthcharts.com

I'm going to do another post on our ENT visit and see what you guys have to say about that, I love others input.

She goes to PT once a week, both myself and the PTs agreed this was adequate, she is very strong for a child with Down Syndrome and I work with her at home as well. She will be starting OT with an a lady out of her home soon. There is very limited resources in our area for pediatric PT and OT, it is shocking really. My girls see some great PTs but it was like pulling teeth to get them access at first. I only found out about the OT through someone else who goes to her.

Alanna does not handle the immunizations well. (please don't start an immunization debate on my blog, there are other places for that) I only allow them to give her several at a time and she still runs a low grade fever after and sleeps the next day away. We woke her up from her nap after she'd been sleeping for 5.5 hours!!