Adopting Amanda-Our Journey to Estonia

Miracles happen sometimes

2011-07-23T16:30:00.003-07:00

Yes, to us this is a miracle, we have worked hard with Amanda, feeding therapists have spent time with her, and her um, determined nature stopped her from doing this for 6 years...at last she has decided feeding herself is better than waiting to be fed, and all of us are celebrating her accomplishment. WTG sweet Amanda.

Happy 6th Birthday to Amanda

2011-03-26T15:49:00.007-07:00

Yes we are still here

2011-02-26T22:19:00.007-07:00

I know it has been a very long time since I have posted on Amanda's blog. I do most of my posts on the family blog, though admittedly, I have not been doing that either...

Amanda is finally interested in playing with her sisters, solitary play seemed to be what she needed for a very long while, Kara and Meghan have bonded very well and Amanda gets left out sometimes, but not to be deterred, the little scamp pushes her way into their games, and sits on them. Like it or not, they will include Amanda!

Amanda loves soft dolls and lately, Raggedy Anne is her favorite toy this week. She walks around the house holding the doll by her hair, and then sits with the doll in her lap, face to face so she can kiss and lick it. (time to wash this doll, yuck) Amanda is a 100% walking girl now, she is so adorable when she walks, still tiny and so slim, and she looks like a 18 month old, hard to believe she will be 6 next month. I have been asked a few times if she has dwarfism too. Umm, no.

She is getting sassy and bossy, she does not say words, but she does tell us off in her gibberish.

Yes, wild hair girl, she loves to run her hands over her hair after licking them and her hair looks so messy, I have a 30 minute window after it is washed to get a picture of her hair clean and smooth!

She will not leave anything in her her or on her head, so no ponytails, hats, nothing. I have found dozens of hair pretties in the dirt outside after she goes out to play.

All in all Amanda is doing very well, she survived a horrid flu season with a runny nose and some cold sores. She slept a lot for a few days and ran a few low grade fevers while other children were ending up in the hospital. We all passed the flu back and forth for weeks on end, but we are finally feeling better. Thankfully none of us got seriously ill.

2 years ago today

2010-06-25T09:01:00.012-07:00

A court in Tallinn Estonia made Tom and I Amanda's parents. In Estonia, they actually remove the old birth certificate from their records and replace it with one in our names, or so I am told. That made me feel rather sad, as if they were erasing her birth family from her existence. We do have her original BC though. I never forget to say a prayer for Amanda's birth mother and to thank her for allowing Amanda a chance of a forever family. Yes, we are her parents now, but her history and heritage will always lie in her home country, she got her genes from there, her blond hair and sky blue eyes were from someone in her family, I hope they think of her sometimes too...

Amanda on a 104 degree day

Our little waif has changed a lot, but it happened so gradually, we did not notice, now all of a sudden we are seeing her as a different little girl. One major change is a little pot belly, oh my, who would have ever thought skinny Amanda would get a belly? She is very strong though, little stinker does a Pilates-like abdominal move hundreds of times a day, I could never do it like she does. It amazes everyone. LOL She actually moves constantly, either waving objects around, or sliding them on the floor, rocking on the dog, or trying to walk across the floor, she rarely sits still. I think I would cease to have a weight problem if I did everything she did all day.

She adores this little rocking toy, originally it was purchased for Kara, but Kara is too big for it now, she tried to rock the other day and the dog refused to move for her, Kara was an unhappy gal.. Amanda has decided that it is a ride on toy and scoots it all over the yard. The bottom has been worn away so much it barely rocks any longer, and there is a hole forming along the side! We are considering getting a new one for her, but I wonder if she would still choose this one?

Amanda and Kara adore the pool, but the pool looses their bowels and mommy and daddy are so weary of fishing out little surprises and emptying that pool, scrubbing down the little stinkers, ugh. I am hoping for potty awareness soon, hoping and praying, I think Kara may be ready, I am thinking of building a privacy screen and letting her go beside the pool in the potty chair, weird I know, but we have to start somewhere. Thankfully Meghan is past this stage.

Amanda has learned to play, now that probably sounds funny, because shouldn't playing come naturally for children? Well before we had Meghan, I used to think so, but sometimes they need a little help.

When she came home, Amanda would grab objects and shake them, her favorites were envelopes and pieces of paper. She would get lost in the shaking, doing it over and over; repetitive behaviors, obsessive behaviors. Common when your child has autism too.

So it really warms my heart when I peek outside when she is playing and see her hugging a dolly baby, planting kisses on their little faces, running her hands over their hair. She is also putting objects into things now, she used to take them out and toss them over her shoulder, so that is progress as well. She enjoys rolling a ball to us, but she also throws it over her head and behind her, and she laughs her head off. Meghan retrieves it and we start over.

She is exploring different toys in the yard, and venturing into places she should not go. Like the dogs water!

No matter how well we block this off, she still finds her way to it, Amanda loves water, splashing in it, swimming, playing with the hose, a far cry from her first bath in Tallinn, when she was terrified and trembling. Now she hears water running, and she is there in a flash.

Amanda can walk, she is still getting steady on her feet, but her leg muscles were pretty atrophied, still she exercises daily and is gaining better upper leg strength. Her calves are skinny little sticks, though not as thin as they were. You can see muscles in her upper thighs that were not there before, she will continue to improve.

She still prefers to scoot to get where she is going, but she also crawls on her hands and knees now, which to me is a delight to see, gotta love motor planning progress.

After a long afternoon in the pool, what does a little girl do? She falls asleep on her favorite toy.

Adoption is such a wonderful gift; Amanda is our beloved sweetheart, sometimes frustrating, often stubborn and LOUD when she does not get her way, she is also sweet and silly and loving. Her therapists say she is the easiest to work with, that she is compliant (not sure that is a good thing either LOL) We are grateful we were allowed to be her family.

Amanda update

2010-01-09T21:38:00.006-07:00

I know I have not updated in a while. Amanda is doing well, growing slowly, but definitely growing. She is trying hard to walk, when she thinks I am not looking, she will walk 8-10 steps, but when she spies me watching, she sits down. I am not certain why she does that, little stinker.

She loves to sit in that spot above, she scoots right over there and sits and laughs and plays. The cats go over to her and sit with her. It is partly the sunlight that streams in there, but I also think she likes the dirt!

She is gradually eating more table food, but still has too much carotene in her diet and is still a little yellow from it. LOL Her speech therapist asked me if her doctors were concerned about her jaundice, I have to repeat over and over again, it is NOT jaundice, Amanda has carotenemia. Explained below, it is a benign condition, and since she is very light complected, it is very obvious in her skin, even more obvious when the flash from the camera bounces off it.

I usually try to correct her pictures a little because sometimes she looks quite yellow, this is the same picture without correction:

Carotenemia is a benign condition most commonly occurring in vegetarians and young children. Carotenemia is more easily appreciated in light-complexioned people, and it may present chiefly as an orange discolouration of the palms and the soles in more darkly pigmented persons.[4] Carotenemia does not cause selective orange discoloration of the conjunctiva of the eyes (orange coloration over the sclera), and thus is usually easy to distinguish from the yellowing of the skin caused by bile pigments, in states of jaundice.

She has learned to climb on everything, before she was a little scared to, and now, I have to rescue her off things all day. She is sitting in the sink of their play house in the picture above.

I love living in Arizona in the winter, it has been in the 70's here and we can wear shorts and short sleeves. Amanda usually wears tights under her clothes, she is skinny with very little body fat, and needs more clothing than us. It was 75 the day I took that picture.

Amanda is changing a little every day, people notice she is friendlier, laughs more, and self stims less. She surprises us daily, and it is very heartening to see her opening up more. I know adoption is hard on our kids, so many stressful changes, but I think they show remarkable resilience considering.

Gift of Adoption Fund

2009-10-13T21:58:00.003-07:00

Amanda would not have come home without the help of quite o few friends and organizations who helped us with fundraising. Gift of Adoption Fund helped us with Kara's adoption too, with Amanda, they came through when we were feeling desperate and praying hard that we would get what we needed to travel to Estonia and bring our sweet daughter home.

They have a new website, guess who is listed in their success stories? http://www.giftofadoption.org/success/familyStories.html Yep, our Amanda!

If you have extra money for donations this year, consider sending some their way, they help hundreds of families realize their dreams of adoption, families like ours!

Getting closer to self feeding!

2009-09-17T09:08:00.006-07:00

Amanda last night, three of us have cold sores form being ill, lovely huh? Amanda had feeding therapy on Tuesday and she was picking up her spoon and bringing it to her mouth! Something she would not have done even a month ago, she is getting close to feeding herself, isn't that wonderful?

Actually she has made quite a few gains in her development and we are so happy to see these positive changes.

She is beginning to play with toys, not just wiggle them, but to look at them and explore them and turn pages of books. Her self-awareness is increasing daily too. I believe it is from spending the summer in the pool and getting all that sensory feedback, but she also seems to trust us more.

She is taking 3-4 steps when she tries to walk, but I know walking by herself is months away, she has very under-developed muscles, but she is getting stronger. She is getting a social smile, actually smiling at people who say hi to her, not all the time, but anything is better than hiding her face from them!

Here she is playing outside, yes my girls get very dirty outside, she has a blast in the grass and we have also seen her eat dirt, arg!

Today we had a few people over and she went from person to person, climbing in laps and sitting for a bit. In speech she cooperated with most of her therapy too.

It is heartening to see her growing and learning and to know she will continue to improve in small ways. Her autistic behaviors remain, they are no better or worse. At this point in her life, it is not a huge hindrance in her social development because she spends the day with us and we do not demand what a school would of her, we do not overly stress her and give her space when she needs it. I think we made the right choice in keeping her home with us. I understand everyone has different priorities, I want Kara and Amanda to have a good foundation of support and bonding before they are thrust into another experience. I suppose I do not want to share the girls with others yet, I am not certain, but my heart tells me we are doing what is right for them, for us.

We are who we are

2009-07-16T09:08:00.002-07:00

Digesting information, getting used to saying "She was diagnosed with autism" to therapists, yes, that was what the last two weeks were like for me. No one was surprised, everyone expected it, Amanda is who she is.

SO now we move forward, "she is not terminal for heavens sakes", that is what I told myself as I kicked myself in the butt, "time to move on Kris".

Last night was HOT, we were all uncomfortable and no one was falling asleep, Julia was restless, Meghan was too, and Amanda and Kara were in the cribs playing at midnight. Amanda, giggling her head off and having so much fun, we had to go and see what she was doing. She was just plain happy, she is a relatively happy little girl, and she engages in simple pleasures that bring her tremendous joy. Rocking on a toy, playing in the water, being held and tickled.

We think she loves us, we love her, and we will all help her as much as we can. We are used to the scenic route in our lives journey, this is just another trip on a road we have not travelled. There is always something exciting about going a new way, lets get started!

A is for Autism and for Amanda...

2009-07-03T11:46:00.005-07:00

The pictures I don't post, the head dropping down, her averting her eyes because maintaining eye-contact causes her stress. So many of the same pictures over and over and over, hundreds of them; why show them? They actually make me quite sad because when the camera is not out we see an animated Amanda, and then when she sees it she retreats, hiding her face, avoiding me. She also does the same thing with new people, she will relax after a bit, scoot over to them and sit in their laps, and then try to scratch them with a grimace on her face, strange behavior, wish we knew why she has that urge?

We knew Amanda had some issues that were characteristic of autism, but like everyone; friends here, family, on-line friends, we had hoped and prayed it was institutional. Something that could resolve over time, and maybe some things still can and will, but we waited the year we were asked to wait, all the time seeing so many positive changes, but knowing, some things that should be better, weren't.

"Your daughter has all the makers to indicate she has autism". That is what Dr T, the developmental pediatrician we saw yesterday, said to me. She also asked me, "But now what? Do you want me to write this down, that your daughter may have a triple diagnosis? Aniridia, Down syndrome, Autism? Your daughter is a complex little girl Mrs L., but you knew that, didn't you?" and "What will it change for her, will it provide her better care than she receives? Additional therapies? With our state budget in the toilet, can you get the therapy?" So many questions, she was very kind and compassionate, I had tears in my eyes while we both looked at Amanda, both of us wishing Amanda would get a break.

We talked about Amanda's other diagnosis, Aniridia. We got the notice from the insurance, they agreed to pay for the PAX6 F.I.S.H. test. The most important issue surrounding an Aniridia diagnosis and whether or not she will need renal screening for life, the mutation of the PAX6 gene predisposes those people to renal cancer. We have not called to schedule the blood work yet, preferring to do all three girls at once, and Amanda's one year physical is coming up in a couple of weeks. If the test is negative, then her increased chance of renal cancer is gone. That would mean that our Amanda would more likely have Gillespie Syndrome. Even more rare than Aniridia. One fact remains, Amanda's pupils are huge, they are corrugated and bleed into the iris, she has poor vision, though not dysfunctional. And we have witnessed episodes of nystagmus. Something is going on there, but if it does not threaten her life, I am not going to stress about it.

Because of the nystamus and what seem to be momentary lapses in consciousness, she will also get an EEG to rule out epilepsy. Dr T does not seem to think this is Amanda's issue, but her therapists are concerned, so we will rule this out.

I hold her, love her, feed her, bathe her, she is my daughter, and yet knowing that even the professionals agree with the autism diagnosis makes me incredibly sad. I remember almost two years ago seeing her face for the first time and asking A if she had autism. I looked at her and I KNEW something was missing from her gaze, it was not engaging, it did not connect to the camera, does that make sense? So even two years ago I was concerned about Amanda having autism, but more than anything I wanted to be WRONG about that.

On to the next chapter of her life, she is making progress, and that is what really matters. She is up another pound and is nearly 3 ft tall, she IS GROWING.

Now and then-ADOPTION DAY ANNIVERSARY

2009-06-25T16:13:00.013-07:00

Random pictures from a year ago, and the last couple of days.

Posts from last year:

24th http://ukiestoniamomto8.blogspot.com/2008/06/zen-baby.html
25th http://ukiestoniamomto8.blogspot.com/2008/06/we-are-proud-to-announce.html

Daddy walking Amanda out of our apartment in Tallinn on adoption day. She was frightened poor baby.
The courtroom in Tallinn, Tom and I sat on the left, Tom was holding his Amanda in his lap. I remember vividly when Igor told us he already saw a change in Amanda. Maybe she knew she finally had a family of her own.

First thing this morning, after breakfast of course :o) Amanda is not happy until she has had her food. LOL

Amanda does not like getting her picture taken, in fact, most of the time she either ducks her head or turns away from me. Little stinker, this morning she was so happy, giggly, hugging us, think she knew it has been a year since we adopted her?

Amanda in the van waiting for Tom to fill out his embassy paperwork, he was leaving the next morning to America.

Outside after a day in the pool. Her hair is even white that it was now, all that sun.

Such a stinker, I took so many picture of her trying to get her to smile.

Getting in her pool, hard to keep her out of it.

What a face, she is such a funny little girl!

Our beautiful and complex little girl, she has come a long way, but has a ways to go to catch up. We are very proud to call her ours.

Gotcha Day-one year ago

2009-06-23T17:14:00.003-07:00

As I mentioned, we were concerned that we would not be allowed to see Amanda before her adoption day, which was the 25th of June. Thankfully Igor was able to take us to her orphanage. We watched her being fed while laying flat on her back, some broth and sugar water, kind of explains why she cannot move food back using her tongue yet, no lateral movements, and always with a sucking motion. They do the best they can in the orphanages, this is a common practic during meal time from what we have heard and seen, but it makes me sad for Amanda (and all the special needs orphans fed this way), who must be fed soft foods to this day, she is progressing but slowly.

You can read about her gotcha day here, our post from last year.
http://ukiestoniamomto8.blogspot.com/2008/06/we-have-amanda-with-us.html

Second day- reminiscing about Amanda's adoption

2009-06-22T07:45:00.008-07:00

http://ukiestoniamomto8.blogspot.com/2008/06/we-are-here.html What we wrote last year

This time last year... Tom was out and about later that evening, seeing Old Town and marvelling over it, and I was sleeping off jet lag. Our first meal in Estonia? MC Donald's!

Amanda loves to do two things, play in the wading pool and rock on her doggie (uhem, Kara's doggy)
Being out in the sun every day has brought about some changes in Amanda's skin, we just call her Surfer Girl, she looks like a little beach bum! Who would have thought that our blue-white daughter could get such a dark tan?

When Amanda saw the geneticist, he asked us if we were concerned about her slight build and weight, we told him no, not really, but everyone else seemed to be. We know how much the little mite eats, and believe me when I say, it is A LOT. Thing with Amanda is, she never just sits, if she is sitting on the sofa, she is rocking and bouncing off it. She rocks outside on the rocking dog, or sits with her legs in the air and her arms waving about. She is in constant motion. Watching her is like watching some one do aerobics for 12 hours. She likely burns off too many calories, she eats organic food, healthy food, and we do not give our kids junk food with the exception of all natural cheese puffs and organic corn chips. Though he said we could "fatten her up" with a calorie dense (spelled high fat) diet, he said that he would not recommend it, nor would we do it. Subcutaneous fat does not equal health. So in a round about way I am saying, we accept it is who she is right now. I WISH I had her metabolism.

We have decided not to take her to any more developmental specialists in Tucson, they know absolutely nothing about post-institutionalized children, and it is a waste of our time and of the money. The developmental pediatrician, while a sweet woman, did nothing at all to enlighten us in terms of behavior or their development. We got a You are doing a good job with them", and since we already had therapy in place for Amanda in areas where she needed the most help, the doctor did not recommend anything but the autism screening. Today was the day Amanda was to be evaluated for Autism, the insurance mess was never fixed, and frankly, what good would it do? This is the same office where we have seen all the specialists and we know that as a team, they are not knowledgeable about our kids from orphanages.

We all agree Amanda does have some emotional issues, I know that every adoptive parent reading this will say "Maybe it is RAD?" and I cannot say no, absolutely not, but again, I do not think so, but who would evaluate that anyway? The doctors we saw knew of no one that was knowledgeable about RAD in our area. The only doctor I found on the west coast to help us with post-institutionalized behaviors is in Bakersfield CA. I do not believe Amanda's (or Kara's) are severe enough to warrant a trip there. Autism comes up a lot, and possible petit mal seizures have also been mentioned (just last Friday). So yes, she will see a neurologist to rule that out, though not one of the doctors who have seen her has seen anything pointing to epilepsy. Her yearly physical is coming up in July, we can ask about referrals then. She does have plagiocephaly therefor epilepsy is a possibility, though we have not noticed anything resembling a temporary lapse in consciousness or awareness. Amanda's ST thought she noticed some nystagmus the other day. Amanda does have a partial expression of Aniridia, the nystagmus could be part of that diagnosis and not point to epilepsy at all. Answers to more questions...

Amanda's health history is a puzzle to us, we do not have detailed information about her health or development. We got a booklet with medical information jotted down in Estonian, I have no idea what it says, though the doctor we saw for Amanda's exit medical went over it with me and indicated that is merely listed her immunizations and each time she saw a doctor. I have not felt an urgent need to get it translated. She is healthy, she got a runny nose this winter when the rest of us were sick with multiple flu's, strep and Fifth disease (Kara). She is happy, and so giggly, and finds so many things intensely amusing, especially the 5 kittens who frolic and play with her daily. All of our cats adore Amanda, and she is loving towards them.

We think she is adjusting well to life in a family, yet she has a ways to go too. She continues to prefer to be alone more than in the mix of things, but then so do I, and so does her brother. Some of us do not like to be around a lot of people (yes, even someone that taught group fitness for 25 years can dislike being around big groups of people). I would be more worried about that if she did not seek attention and cuddles, but she does. She loves to be held, and she loves her daddy most of all.

Last year on this day

2009-06-21T00:53:00.003-07:00

Tom and I were on our way to meet Amanda for the first time! Can you believe it has been a year? I will be doing some reminiscing over the next 19 days, the length of time it took us to adopt Amanda and bring her home. I cannot believe how fast the year flew by!

Some sweet pictures of Manda Moo

2009-04-13T20:04:00.007-07:00

After two rainy days and a 20 degree drop in temperature, we finally had a pretty day for the girls to play. Amanda had fallen asleep in the living room chair earlier today, so she skipped her afternoon nap, and while Kara slept at the usual time, Amanda was up and ready for fun! Once again we missed getting pictures of Kara, but we will get some tomorrow. :o)

Amanda is getting some fat on her, it is nice to see some toddler plumpness on her tiny little frame. Lately she has tried very hard to stand up, she usually falls back on her bum, but she thinks that is hilarious too.
She adores playing with Meghan, and was giggling so hard today, it made all of us giggle with her. She is such a sweet little girl.

I loved this one of her, she looks so precious.

Kara is having a hard time keeping Amanda off her doggie, Amanda's aunt Becky is getting her a rocking animal for her birthday. I think it will help with our little fights around here, Kara is forever pushing Amanda off the dog!. Amanda just moves away to try something else, she rarely gets her feelings hurt.

Happy 4th Birthday to Amanda

2009-03-26T08:26:00.001-07:00

We have a busy day today, so we will post pictures later on today. I cannot believe our sweet little girl is 4. And now we have two 4 year olds.

8 months at home

2009-03-25T12:14:00.005-07:00

Tomorrow is a HUGE day for Amanda, her 4th birthday, and her first birthday at home with us!

We adopted Amanda 8 months ago today! I just dawned on me that much time has passed, it seems like I was just in Estonia with her and it also feels like she has been here forever! Very confusing. Where in the world did the time go? Do you think she looks different?

Some physical changes include some added weight, darker tanned skin, her hair is getting darker, her eyes seem to be getting darker? Wonder why that is? Not the darker skin, that is AZ sun, but the other things. *G*

The thing we did not realise is how much her skin color changed, it was a gradual change, and then all of a sudden we are wondering when Amanda got a tan!. She used to be a pure bluish white, and now she is a golden tan. LOL The yellow is from beta-carotene, a dermatologist confirmed that, I hope that as she eats more foods, that should resolve. I make a conscious effort to feed her foods of all colors. ;o)

Amanda and Kara have had runny noses, and they get really sore from constant wiping. Thankfully Amanda is feeling better, I am not so sure they had colds, but instead had allergies, the pollen count here has been astronomically high.

Amanda and Kara visit a developmental pediatrician tomorrow, we will see what she has to say. I have been filming some of Amanda's quirky behavior, she often shuts down when she is around new people, and I wanted the doctor to see how she acts at home.

Answering comments

2009-03-23T17:52:00.003-07:00

Anonymous said...
i love your choice of clothes. have noticed previously you are a boutique kind of woman and gymboree. i love her hair bows.

Man, am I busted, I admit to loving the more upscale clothing for my girls. I buy from Target, but find their kids clothes do not have the hand-me-down durability of Gymboree or GAP. Most of Amanda and Kara's things were Meghan's, many were bought for resale on eBay, when I used to have a store. I rarely buy retail unless there is a good sale.

We have two big baskets of hair bows, also many were Meghan's, but when her alopecia took off, the hair pretties made her hair come out faster, so we no longer use them on her. She also complains her scalp hurts when I put barrettes on her. I am very happy to have two little girls whose hair I can put bows in again. Meghan feels badly that she cannot have them too...

BTW, I belong to yahoogroups for children's clothing, I have for 5 years, I made very good friends there.

In reference to Amanda's self stim and teeth grinding:
Mandy said...

After Alex was sick, he regressed A LOT - started doing the head banging and "bumbling" --- went on for about 2 weeks and then faded out - it about drove me nutty though! Hang in there - you are a great mom and Miss Amanda KNOWS it :)

Meghan and Kara regressed some too, but Amanda was never ill, which is why I got so perplexed from the regression, though she seems back on an even keel now. Thank you for the compliment, sometimes I feel like the worse mommy ever, especially when all three are grumpy and whiny.

Jennifer said...
I LOVE the new photos!! She is such a princess! Aidan is a teeth-grinder, and he does it more when he's off schedule, or sleep-deprived, or getting sick. Then things go back to normal.

The teeth grinding thing is something that sets me on edge, I can almost hear her destroying all that dental work. It has eased off some, she did it more when she has a runny nose, makes sense, her sinuses were probably hurting her.

Carla said...
I just love all the pictures of Amanda. She is just to precious. Victoria our 9 yr. old did the same thing when she first came home. I think when she started getting too comfortable with us she would do it afraid of getting to attached.

I wondered about that with Amanda too, you could almost see her thinking "Wait a minute, these folks are relatively new to me, what am I doing trusting them so much?" LOL

Alice said...
Any chance she has a tooth bothering? You've probably already checked. Baby teeth can flare up fast!

Last time she did this, I rushed her right over to the dentist, he said all her teeth were fine, though if it continues, i will take her back. I am feeling like I am getting the eye roll when I call the various doctors all the time, oh well, they will have to get used to me or we will find another more understanding and welcoming medical team. *BG*

In reference to scooting and buying Amanda a birthday present:

Cammie Heflin said...
Kris there are several things on the Toys R Us website, I found a pony, horse, fire engine, alligator and caterpillar!

Thank you for looking for us! I looked on there a few days ago, what we need is a plastic rocker that can endure being outside, we do not have room inside for all their ride on and rocking toys.

Meredith said...
Happy birthday little one!

The scooting is how Brianna got around for about 2 years before she started walking, though about a year before she walked she did learn to crawl but only did it on occasion. I babysat a little girl that was crawling everywhere... she caught on ;)

Emma now scoots like that too. She doesn't have the ability yet to separate her arms or legs to move, so if she tries to crawl it comes across with two hands forward then two legs like a little frog hop. We still encourage it but she doesn't like to do it.

Eventually Brianna did walk tho and does it just fine, so I'm sure once Amanda is more interested in keeping up with the older girls she'll be up and running! :)

Thanks for the birthday greetings, I am looking forward to our little family party for her.

I admit Amanda is a first for me, other than a vidoe, I have never seen a baby or toddler get around this way. It just goes to show how good we humans are at problem solving! I try to get Amanda to crawl and she giggles her head off, apprently she is really ticklish. LOL Makes it more fun to do. Getting her to kneel has been huge challenge fo rme, she fights like no ones business when I try to get her to.

I am just thrilled Emma is doing so well, I bet the frog hop is adorable to see.

Lately Amanda has been working on standing from a squat, talk about a workout, she has a lot of trouble balancing, mostly because she tries to on her tippy toes.

Lou said...
She's adorable! Mattea knows that scoot too! And I love her pretty, pretty blonde hair---

Amanda's hair is so pretty, and of course my husband, who loves blondes...like me I guess...thinks her hair is gorgeous. They are very bonded to one another, it is so wonderful to watch them together. Mattea looks so good, any word on surgery?

Leah said...

Where in Wisconsin is the pick-up for the rocking toy? Also, I was going to comment on the dry hair issue. The the olive oil on hers too! Angela's hair is still SO SOFT even 3 days later, and believe me, the winter here DRIES US OUT!!! Anyway, I 'm going to be driving out to the Wisconsin Dells this weekend, so if the pick up on that toy is anywhere on my way I'll gladly pick it up! How about a spinning thing? I have a spinning thing from Ikea that Angela used once. It's along the lines of a sin-n-spin, but they can lay their whole body on it if they want to.

Hi Leah, I have to say first, that I loved your typo; sin-n-spin sounds very naughty! As the quessn of typos, I have written some interesting things...Thank you so much for offering to pick up the toy for Amanda, but when I looked for it again on Craigslist, the listing was deleted, I guess it sold, that is so depressing! I was going to ask if they would consider shipping it.

I always thought Wisconsin was a wet place, but I suppose we all get dry hair and skin in the winter, I really do not have a point of reference for anywhere but AZ, the only state I have ever lived in. Of course I was in Ukraine for 6 weeks in the winter too, and yes, I remember my lips were very dry, i was thankful for my Burt's Bees lip balm.

The girls do not play with their spinning toy, but I bet they would yours, I will look on Ikea and see what they have, thanks!

Shea mentioned that: Could you maybe make your own spray in with a little olive oil and such. I bet you could come up with something. The pics are cute by the way.

I am going to work on some sprays for the girls hair, Olive Oil sounds like a good idea, I know they make special spray bottles for using it when cooking, why not try it on hair too? I thought the Organic hair product manufacturers may have something, but even those have some estrogen disruptors. Call me goofy, but my 16 year old went through puberty much too early, and I am convinced it is from a lifetime of regular milk, produce with pesticides that mimic estrogen in our bodies, and hair and skin products with parabens and PEG. As a cancer survivor, I am very careful about everything we eat, clean with, and bath with

Charissa said...
That last photo reminds me so much of Ava! By the way, Ava scoots too and ruins the seat of her pants. That's why I only buy her clothes at the Goodwill, at least until she is walking! :)

I just love Miss Ava! She is petite like Amanda, they do look very similar in body type. Thank goodness for Savers, I get a lot of denim for $1.99 and let maanda do what she may to them. I am glad Kara can wear frillier pants now that she is no longer crawling.

Cousin it has a sister

2009-03-22T17:34:00.005-07:00

Amanda's hair makes me giggle, it all grows forward and covers her face, she reminds me of Cousin It, remember him/her on The Adam's Family?. Of course you never she Cousin It's face, and we try to move Amanda's hair out of hers. She usually has it up in a hair tie.

We just washed her hair, it is so dry right now, we have almost no humidity here, skin, hair, sinuses, all get so dry. We need to find a good spray on conditioner that does not have parabens, PEG, or any other harmful ingredients, and so far there is nothing. Why do they put hormone disruptor's in baby products?

We got her hair in a ponytail, and she was so happy, she really dislikes it in her face too. Of course I missed the happy faced Amanda by seconds. LOL

Why we call her Scooter

2009-03-21T22:51:00.004-07:00

I thought I would share a picture of her I posted on Meghan's blog, I am not certain that people who read this one read Meghan's, which is really our family blog. Amanda's blog was meant to be about her adoption...

Amanda gets around this way most of the time, because of that, she wears jeans all the time. The rear ends of most of her jeans are wearing out, good thing we go to resale shops and get a lot of them, why pay full price for something she will destroy on the cement outside? We do get the skinny jeans most chubby babies can't wear, they fit her perfectly! Please excuse the clutter, it is always around, even 5 minutes after we pick it up! Too little room and too much stuff!

I wonder why Amanda has chosen to move about this way instead of on her hands and one knee and one foot like she did in Estonia, she still does it occasionally, but mostly she scoots. Her lats are getting stronger, trying scooting like her and see how tired you get! She is skinny, but very strong. We always joke that we are going to put a cleaning rag on her bottom and let her clean the floors for us. We can tell when we need to by her dirty her bum gets too. If she cannot go outside (rain, darkness) we put more delicate bottoms on her, and they pick up everything.

Amanda's 4th birthday is this Thursday, we are looking for another rocking toy for her, she and Kara fight over Kara's dog. So far Little Tykes does not have a different one in stock and I cannot find anything in Tucson for her. Craigslist had a rocking worm like Kara's in Ukraine, but they wanted local pick up. I believe it was in Wisconsin, so that would be too long of a drive, don't you think? Who would have thought it would be so difficult to find a plastic rocking toy? We do not want a plush rocker, there are plenty of those, Little Tykes also has a horse, but none in stock. I am so discouraged, but will not give up yet.

The worm like Kara's, I have been looking for over a year for this, I am bummed I cannot get it for the girls, I think Kara would be more inclined to use the worm and Amanda could use the dog, then we could et her a different toy!
Our other option is a sand and water table, though all three would likely play in that. I also looked into a sand box, but with 7 cats, can we keep them out of the very large litter box. What would you recommend for miss Amanda's 4th birthday, keep in mind, she is like an 8 month old in development.

Many moods of Manda Moo

2009-03-16T19:08:00.011-07:00

Amanda took an early nap today, so she was awake when she and Kara normally take their naps. It was fun to take a few pictures of her without miss Kara getting in front of the camera. LOL Kara loves to see images of herself. Amanda is learning who she is, she looks in the mirror and her eyes open wide, it is bittersweet to know she likely had not seen much of herself before then, but who knows, she very well could have. There is a lot I do not know about her first 3 1/2 years.

She has been having a harder time making eye contact lately, we do not understand why, she was doing really well, her self stim behaviors have increased and she is going off by herself again. Nothing new has happened to set this change off. Maybe just a stage for her, she does love to be held, tickled but not cuddled, that drives her crazy!

Amanda's classic head drop, this is what she does when she has had too much input or has laughed too much, or played too hard.

I just love the look on her face here, "Mom, are you done yet?"

Near the end of our little photo session, she did not want me to take more pictures, but she did want to stay on the step stool. She got nice and dirty outside today!

The promised pictures

2009-03-05T16:59:00.006-07:00

Here are the pictures I promised. It is challenging to get good pictures of Amanda because she wants to sit with me when I sit on the floor. I like to take picture on their level. I kept taking her off my lap, but she kept coming back. LOL Amanda is not growing like a weed; more like a rare flower that needs a lot of TLC. I wish I had her metabolism.

Amanda working her lower abs! Honestly, she can hold her legs in the air for 5-10 minutes at a time, her core is strong. I love her delicate little feet.

Ahhhhhh, she is such a precious little lass, isn't she? It is such a privilege to see her blossom, we are blessed to have her in our family. Her bangs need to be cut again! He her grows so much faster than the other girls does.

Look how long her hair has gotten. She also has dark roots, LOL, maybe 2 shades darker than her lightest hair. We were joking that she was a bottle blond, but it is obvious she is a true blond!

It is peculiar to me that Manda gets a dirty face 30 minutes after eating, we think she must have food in her mouth she does not swallow, and it gets all over her face sometime later. She still looks beautiful to me, dirty face and all.

I did post a couple on Meghan's blog too.

SO adorable

2009-03-05T01:08:00.002-07:00

Manda Moo, what a character she is showing us, we know it was likely always there, and she is just relaxing a little more every day.

Today I watched her climb on the rocking dog by herself, BY HERSELF!! I have been showing her how for weeks and she finally did it, I am so impressed, what a smarty pants.

She signed more to me when she was eating, FINALLY, she was very pleased with herself.

Her daddy came home from work and she squealed in delight and rushed over to him, bootie scooting all the way, saying da da da da. He picked her up and she cuddled into him, she adores here daddy. It is so wonderful to see her wanting attention and giving back affection. She is quite a love bug, and who would have figured that from the scared and withdrawn little girl we brought home?

She does grind her teeth, drop her head and breath heavily still, but not as often, and she stops when we tell her to, so she is making good progress. However, her PT evaluation places her below the 1 percentile for gross motor compared to other 48 month olds, so yes, she is very delayed, but she is also making progress, maybe she is more like a 6 month old now?

I will try to take pictures tomorrow. She finally has feeding therapy tomorrow, all the illness here kept the therapists away, they certainly did not need to catch this terrible flu.

Blog Award

2009-02-28T14:48:00.002-07:00

Jennifer at Elliot's Nest has awarded me the Premios Dardos blog award. This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day.

Step 1: respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.

Step 2: tag - eight other bloggers to do the same.

1) What are you wearing right now? Grey shorts, black tank, no shoes. It is warm here again.

2) What is your biggest fear? Losing one of my children to illness, especially after so many have been ill the past two weeks.

3) What was the name of your favorite pet? Gigi, a beautiful black cat who thought he was a dog.

4) Who is the last person you hugged? Amanda, when she went down for her nap.

5) What websites to you visit when you go online? Blogger, Care2 News, Mercola.com, Yahoo, Gymboree-Children's Place-Pumpkin Patch.

6) What was the last item you bought? Burt's Bees lip balm.

7) If you could go anywhere in the world, where would you go? Back to Ukraine and Estonia.

8) If you could go to the Oscars, who would you want to sit next to? Clint Eastwood, I think he may actually talk to me.

9) Has a celebrity's hair cut ever influenced your own hairstyle? Once, Farrah Fawcett, in HS.

10)What is/was your favorite thing about being pregnant? Least favorite? Feeling my babies move, having to go to the bathroom all the time.

11) What was the last movie you watched? Dante's Peak.

12) What is the luckiest thing that ever happened to you? Wow, there are so many, but I would say winning a dental makeover, my teeth were a mess.

13) If you had a whole day to yourself with no work, commitments or interruptions what would you do? --Read a good book, catch up on emails, watch Gone with the Wind without the family complaining about it.

14) Is there a major goal you have that you haven't yet achieved? Completing college.

15) Drinks are on the house!! Ha ha, water! I do not drink soda or alcohol.

16) What is something that those in blogland might not know about you? I have been in a movie and a few local commercials. Been in them, not starred, LOL.

17.) What is the best vacation you ever went on? Going to New Orleans on a road trip with my three youngest and hubby Mind you, I was having surgery, but I enjoyed driving all the way to LA from AZ.

I tag:
Dawn
Mandy
Kristy
Melonie
Gayla
Charissa
Joy
Meredith

Amanda is a tough cookie

2009-02-25T22:08:00.002-07:00

Meghan and Kara were hit hard with a flu, and so far Amanda has avoided getting it, I am so grateful for that, two whining and miserable girls was enough for me. On top of the girls being sick, Tom and I were too.

She is doing well, her newest BIG thing is being able to climb up on furniture. She can get on everything now, go Amanda! She has been a trooper through her families flu bug, quietly sitting and playing. You can tell she is wondering why her sisters are not their usual selves.

Just thinking

2009-02-07T16:33:00.004-07:00

Her hair grows so fast! I just trimmed it and it is in her face again. She adores playing outside, we have to pick her up to get her back in the house with us. She also loves to play in the dirt, and is getting pretty filthy. She often has black grime encircling her mouth.

Therefore, I am grateful she is tolerating baths better, no more abject terror, just some nervous singing. She does not having her hair washed either, she and Meghan both hate that.

She has had two sessions with the feeding specialist-OT. I think they want too much too soon from Amanda, I am happy with slow but steady progress, as professionals, they like measurable gains. I think we are going to have to agree to disagree with this one. She is bigger and taller, but still thin, maybe her bio mama was thin, her new mama is not, I definitely have some weight to lose.

We did a speech evaluation for her yesterday, truly could not do your typical exam with her, there was no pointing to pictures or responding verbally to anything. It was more of a question and answer session, but Amanda will begin speech too, so that is a huge relief for us, hopefully we can address her delays.

I have to be honest though, with all of these people looking at what my girls can do and telling me how to help them, I am feeling harried with all the demands placed on me for each girl. They all mean well and they are all kind and professional people, but it leaves me feeling inadequate and frazzled. “Feed her this way, hold her that way, do this when you play, use cards to help her communicate, use sign language, do you have this special spoon, do you use this book, that tool, this DVD?”

I remember going through something similar when Meghan had early intervention and joked then that she had 4 people raising her with me, her dad, the PT, OT and ST. While I joked, it felt extremely invasive. There has to be a fine line between helping your child to reach their maximum potential and interfering with their exploration and learning processes, how do children truly learn, and do we even know the best way to help them? If you read the post I deleted about schools, you will understand that I do not believe educators truly know how to teach children. They follow theories that in practice fall very short.

What has been interesting for me the rapidity that both Kara and Amanda have learned since coming home? Previously I followed along with the premise that without early intervention, a child with Down syndrome would not have the tools to learn, that perhaps their brains would fail to form the correct pathways for future knowledge without therapy. Yet both our littlest girls are learning what Meghan did, playing catch up. Yes, they are very delayed, Meghan is too, a full 4 years behind in many developmental milestones of a typical child, and she had early intervention. It begs the question, are the therapists and their ideas of what therapy should be failing the children? I know that I worked very diligently with Meghan, incorporating each task into daily living, we did our therapy homework on schedule with the exception of the year I fought breast cancer. I was not super cancer mom, you read about them, they cook, clean, and do everything they did before cancer diagnosis, surgery, and chemo despite their great fatigue. I had friends who did the same, most of them lost to cancer…I was so tired I could not stay awake for longer than an hour at a time. Would Meghan be further along without that break? I doubt it; she seems to learn at a specific pace regardless of what we try with her.

It was important to me to get both Amanda and Kara therapy as soon as I could and now I am thinking I should have waited a year to begin, they had enough to learn and adjust to already. Did I make a mistake? I think I did.

Surprise!!

2009-02-01T22:08:00.002-07:00

I think this is a case of seeing her sisters walk and wanting to join them, Amanda is amazing us in the rapidity of her developmental progress, she is one determined little girl and we are so proud of her! She has a ways to go, but every new step counts!

An overdue post

2009-01-21T20:56:00.009-07:00

Cupid bow lips, what a lucky girl. I had a hard time getting a picture of her today, she kept on moving away, ducking her head, or the pictures were blurry.Don;t you wish you could capture who your children are and how you see them daily, the surreptitious grins, the sly smiles, the coos and the giggles? Amanda is such a complex little girl, but I am frustrated in trying to get her on film, I hope you enjoy the images I managed to get the past few days.

My sassy little lassy. She is opening up every day, she still withdraws into herself, but we can see the feisty and sweet little girl emerging more and more every day.

On her favorite toy right now, I watched her try her best to climb on by herself the other day. She was standing up and every time she placed her hands on the dogs head, it would rock and she would startle and back off. After a few minutes of trying and failing, she slapped it and kicked it out of her way. Mommy came and helped her on, showing her again how to get on by herself, I have a feeling she will be able to in a few more weeks, she is determined! Yes, she is drooling, she is getting two teeth.

Sitting with mommy, and yes, I did not want to be in the picture. Look at her hair! It all grows forward. I have been putting it up in a ponytail, but this one is without it. Still my little buttercup, but less so. LOL

This picture came out red, argh, the flash did not go off, but I could not delete that precious expression, so greyscale here we come. Isn't she precious?

How is that for a face, goodness, Amanda should be in movies, she has so many expressions, she always makes us smile.

The orthopedic doctor will evaluate Amanda tomorrow; we have completed her school evaluations and are awaiting her IEP. Sadly I could not meet when it was convenient for the school (7:30 AM tomorrow, hum, no way, it is just me and the girls and no way to arrange it that early) so I am not certain when we can do it. I think I will be signing paperwork giving them more time, by AZ law; they must complete her IEP within 10 days of her evaluations.

I am frustrated with the special needs-special education system, and things are only getting more complicated. My friend Kathy keeps telling me to get "Negotiating the Special Ed Maze", but when do I have time to read it? I have 10 books here about Down syndrome (Woodbine House), and can read two or three pages at most. This weekend I am attending a Down Syndrome Connection meeting most of the day Saturday, sadly, not about education. I am planning to attend the Wrightslaw meeting her in March, and it is about special education, so I am hoping that anything I am rusty on will be reinforced and it will help me advocate more effectively.

Seems I make everyone mad with my not so insane demands and honest questions, nothing-new there, I excel at irritating and angering people, I ask too many direct questions, makes folks wary of me. According to some parents, it means I am advocating for my kids, but I do not enjoy the contentiousness of it all. Moreover, the people I ask the questions of rarely answer me truthfully; I do not like the ambiguity of the responses I get from them.

The girls SC came over today to get me to sign some paperwork for Amanda’s OT sessions. It seems Amanda will receive weekly OT and feeding therapy for 3 months. After which time they will decide whether she will continue, but it is likely they will hope I learned enough to do it alone from that point forward, it saves them money you see. I asked, "Do you think you can place a time frame on such a thing, Amanda's needs are complex, I really feel an expert should be addressing her needs for a while". The answer to that? "Well, you know, she is over three and the school should be providing this therapy for her, not ALTCS". That was not an answer to what I asked, was it? So I say, yes, I understand that, but it was determined that she cannot function in a school setting at this time. Her reply “Did you get that in writing, I bet you did not, they would never put that in writing” it goes on and on, and left me with a sour stomach and this headache pounding in my temples.

Every time we learn the rules, they are changed, and I said I believed it was to keep parents off balance, so we could not effectively advocate for our children. The answer? Nothing, she said she would not get into a political discussion with me. I am so frustrated and feel like punching something, do they do this on purpose, or maybe they are hoping we will give up and they can stop dealing with us as often (they do have to complete paperwork quarterly). My girls are too important for me to be defeated so easily, so this conflict will continue for a very long time I am afraid.

Is anyone else nervous about what may happen to special education with Obama in office? We know our new Governor Jan Brewer (Our old Governor, Janet Napolitano will be new director of Homeland Security...) Governor Brewer has already indicated she will balance our budget in AZ , and this means cutting funding to existing programs. It is belt tightening time in government (bet they won't take a pay cut though) this will likely include funding allotted for special Ed services. According to the SC, things are only going to get worse for the girls and their access services. (which the school is supposed to provide, so why aren't they, and you should .......)

I think I will stop thinking about this for the rest of the night.

Trying to walk?

2009-01-10T23:45:00.003-07:00

Amanda loves her Daddy, she will not let him sit down unless she is sitting with him! She also does something else for him that she will not do for me; she stand up unsupported. Last night she stood up and took a step. Daddies face showed his pride in her, and Amanda was so excited. Her problem is, she lacks strength in her little legs for walking, they were quivering while she stood there. She needs PT so badly, I hope one calls soon, we have waited 5 months for Kara to get one too, I suppose there are not any in town right now, otherwise, surely we would have one by now.

I need to get over to John's office, no Wendy, I did not completely forget, sorry not enough hours in the day lately/ We will get the pony rider and seat for Amanda next week. I think it will be what she needs to develop strength in her legs. I think this looks like something to motivate her too, see image above. We believe that Amanda is feeling left out since Kara began walking, and this is why she is trying so hard. She really is a jealous little girl lately, and has been kicking Kara and hitting her, uh oh!

I forgot to mention that her dental exam and x-ray showed no issues, the dentist said she may just have issues with her gums like so many kids with Ds do. Well, you know I hate it when doctors generalize about my kids (or folks with Ds), so I will keep a close eye on Manda Moos teeth and gums, I think something may be going on.

Update on Amanda

2009-01-04T14:49:00.004-07:00

I realize I have not said much about Amanda lately. She has so much going on and is so busy; she leaves me with little time to sit down.

She has been home almost 6 months (January 10). We had to send in her very first post placement report, she was adopted June 25, and so the report was due Christmas day, it was a little late because of that.

I thought the questions were difficult to answer because they assume the child can talk and let you know who they love and how they feel about things. Obviously, Amanda cannot tell us this verbally. So we discussed her behavior towards us, how she reacts to certain situations, what foods she likes, and we made a supposition about various things.

Amanda adores two people, mommy and daddy, she tolerates others, but if she has a choice, she will sit with mommy or daddy, and though she is curious about other people, she does not look comfortable interacting with them. Do we think it means our sweet girl has bonded with us, yes and no. I do think she is beginning to trust us and is comforted by us when she is sad or hurt; but the bonding process is continual with her (and Kara). I have read two blogs today by other adoptive parents and they say much of the same thing. I suppose the term “Work in progress” would apply.

She does not like to be left alone indoors; she will seek us out and stand next to us asking non-verbally to be picked up. Her giggle or sigh of delight when we raise her into our laps is priceless, I have to try to capture her coos and giggles for the blog. If she is outside, she will sit in the sun and just bask in it. I don’t suppose she was able to do a lot of that in Estonia. I have to remove her from it because she will sit and sit, non-moving, just watching the dog run back and forth, giggling at Kara and Meghan, and trying to catch the cats tails as they dash about. She continues to drop her head periodically, she will breath deeply if she is stressed or tired, but she does not avert her eyes as often as she used to.

She continues to scoot on her bottom or skirt crawls (one foot, one knee) to get around. We have to dress her in jeans most of the time because she ruins her clothing if we do not. We need a smoother surface outside; our cement is rough. She is learning to climb up on things, and this is a new thing, we sit still and let her crawl into our laps, she used to try and give up and we would help her, but now, we sit on the floor and wait for her to make her own way. Just this afternoon she sat on her stool all by herself!

I think she seems older than she did when we met her in June, more like a toddler and less like a infant. She is finally trying to drink liquids, just a few sips at a time, but it is a remarkable improvement, she sucked some juice up in a straw two days ago. I think it surprised her too. We squeeze the box so the juice moves up without any suction from Amanda.

She is not interested in self-feeding, cannot chew anything YET, we do not give up easily, but she definitely has an aversion with anything harder than overcooked pasta. We have done hand over hand spoon-feeding with her, it confuses her, she gets alarmed, and pushes to spoon away, she grabbed the spoon once and threw it away from her. She is not ready for this yet.

VENT: Our insurance denied our claim for Amanda to see a feeding specialist, they also said she did not need a developmental pediatrician, and suggested that her regular pediatrician could handle all of her special needs. We expected this and ALTCCS (Arizona long-term care) will hopefully cover this now, with AZ budget cuts, that is not a certainty either. Both doctors’ offices were closed until this week, so I am making calls tomorrow for appointments. I am very disappointed with AETNA; they cover so much less than our previous insurer United HealthCare. We pay so much for this insurance too, nearly $1,600 a month, so you would think they would cover more. It is so frustrating to me. WHY do they cost so much? You know the denial letter actually said they needed to make sure their stockholders got good returns; honestly, I do not think people should make money off denied claims; it is disgusting to me. I am hoping something positive will occur where this insurance-HMO mess is concerned. We are so lucky we can afford insurance, but it makes it hard for us to have any extra left for savings. OK, I am done venting.

As the picture shows, Amanda loves to push the glider; she will do that for 20 minutes if we do not redirect her. She will also go into the playhouse and shut the door. When she is in there she will go through her litany of self-stim behaviors. She hides in there to do them because we redirect her when she does them in our presence. Are we doing the right thing? I suppose some will say no, but Amanda’s self-stim are very loud vocalizations and it is hard for anyone to do anything when this occurs. She is now saving them to tell us she is hungry or tired, and we are working on helping her tell us this via sign language. So far, she seems uninterested in sign, she has done more a few times, so it is going to be a battle with her, or maybe she is not ready for this yet.

She loves to grab the collars of our tops and rip them, some stretch and she thinks it is hilarious when mama shows the world her bras, ugh. She likes to pull hair and attacks Kara especially, but Kara usually starts it. Amanda is learning to fight back, somehow I think she always knew this, but was too afraid at first to do it. She has learned a high-pitched scream and practices often...she does not allow us to do much as she is very demanding when it comes to attention paid to her. She takes off her shoes as fast as we can put them on, she does not like to be naked and screeches until her clothes are on. She gets cold easily and we have to put thick tights under all of her clothes. She loves to wipe her boogery face on our clothing and usually does this right after we change to go somewhere. LOL

This is not to say that she isn’t the most adorable little girl ever…she has the cutest little voice and when she hugs us, she sounds like she is in heaven! Her giggles are also so sweet and full of life. She does not think beyond her needs being met. It does seem like she is self-centered, I would expect that out of her right now. She needs to be to survive; all of us do to an extent.

Overall, I feel she is making good progress, the fact that she prefers sitting in our laps to doing anything else means she wants to interact with us, and that is a huge change for her. I do think she did act lovingly towards her nanny in Estonia and it was her fear of us as new people in her life, in being in a new home and hearing a language she did not understand, which made her withdraw into herself. I do believe she was left in her crib too often and confined to that small space too much, her behavior shows this clearly. It is not unusual in an institutional setting.

Neither Tom nor I will say that no, she does not have an autism spectrum, the changes in her behavior are subtle, and people who do not see her regularly do not see all of the positive changes as clearly as we do. When someone new enters our home, she clams up and they do not see her true self, so it leads me to believe that we did not at first either, BUT she does tend to prefer her own company to ours 50% of the time.

Only more time will give us a fuller understanding of who Amanda truly is. Just like Amanda, we are adjusting to our new lives with her in it. Last night I watched her sleeping in her crib and felt my love of her course through me. There is no doubt that we love her, and I think she knows it!

She just stood up to tell me it is time to leave the computer. I hope this is coherent, Manda was singing her unique song the entire time I was writing it and I lost my train of through often. LOL

More pictures of Manda Moo

2008-12-29T22:03:00.007-07:00

I forgot this from Christmas day, doesn't she look beautiful, truly one of Gods precious angels.

Ah our little Moo, she makes us laugh, she is smiling, playing, and laughing, and sees the camera, and you get this face! LOL

She came over to me after Daddy finished giving her lunch, and I took her picture a few times, looked down and saw how dirty her face was, something daddy tends to forget! I washed it off and apparently missed a spot. tee hee

Can you see what Amanda is getting in this picture? Yepper, a double chin! Seems she is gaining weight after all, so there OT and your feeding specialist, who Amanda will see in January anyway, she does have issues moving food with her tongue and getting it to the back of her throat, and though she is accepting a straw and some liquids, she still does nto drink anything.

I am weary of specialists who know little about adopted children. I know there are adoption specialists out there, but guess what, not in AZ, figures huh?

This picture cracked me up, what a look I got from my precious, and very sweet little girl! It seems contrary to her personality!

Couple of pictures

2008-12-16T15:34:00.004-07:00

Good news, Amanda is less yellow, we are making sure to cover all the colors in food to balance her out. LOL It is sticking around her nose though, weird! Click on her picture, the glints in her eyes are shaped like stars! I think we can say that Amanda is 100% starry-eyed.

She woke up yesterday and it looked like we curled her bangs, she sleeps with her head between her feet and it probably pushed them up when she was sleeping.

She has a slight cold, all of the women in the house have a cold. It does not seem to bother Amanda, she is her usual self.

Now she LIKES the bathtub?

2008-12-08T22:33:00.004-07:00

I heard pounding in the bathroom and ran in there, Amanda was standing by the bathtub wanting to get in the tub, so put her in the empty bathtub and let her play. You can see what she does in the video, she was trying very hard to tell me something, you can see her, I imagined she was asking to take a bath, it was the quirkiest thing.

She sure is a funny little girl, and you can really tell she feels better. Check out her silly video. Oh, and yes, our bathtub is OLD, original to the house ...it is pretty ugly. LOL

Doggone it :o(

2008-12-07T17:52:00.002-07:00

Sweet Amanda, she is such a character and we feel really bad about not giving her pain medication for her dental pain all these months. all of a sudden she is energetic, happier, and affectionate. Sadly we think she has been in pain this whole time from her cavities. :o( Poor baby!

A long Wednesday-and happy to have it behind us

2008-12-04T06:42:00.005-07:00

You can see Amanda's bandaid, this is where her IV went in.

We are so grateful that Amanda did well yesterday.

Neither of us enjoy these dental visits, having to hand our precious girls over to be put under is scary and stressful and we have to be brave for them, so they are not scared. I barely manage that.

We took Amanda in early, there was a cancellation, and we sat in the waiting room until the time of her original appointment. Figures huh? They weighed her on a regular scale and asked me to get on to be weighed and then hold her, you know, the scientific method. LOL I made DH do it, I hate getting on scales, I have not owned one in years. That is another story though.

We waited a little bit more and then one of the assistants came out to get Amanda. Now I don’t know why I am the one who takes the girls in, because it is so hard for me, but I always do it anyway. I picked up Amanda and we followed her to the back.

The first thing that I encountered when I went through the door to the back room is that dental office smell; it has always made my stomach turn, bad memories from childhood? The dentist we saw as children was brutal. So once I adjusted to the unpleasant smell of the office, I took Amanda to the same dental chair I had taken Meghan to just a couple of months before.

The anesthesiologist; a very kind and gentle doctor, (he had been there for Meghan previously) came in with the pre-op shot and when I saw the syringe, my heart began to beat faster. Poor oblivious Amanda was facing away from me while the doctor tried to find a muscle large to give her an injection in. He mentioned that Amanda had very small muscles, it was no surprise to me, she is so little. He gave her the injection in her tiny deltoid, ouch, and she began to tremble and finally cried, poor little baby, it hurt her arm and her feelings, but what can you do about it, shots always hurt. :o(

I cradled her in my arms comforting her and giving her kisses on her forehead and I watched her carefully while the sedative took effect, first her arms went limp, then her legs, and finally her head lolled to one side and her eyes lost focus, this all within 2 minutes of admission. I felt so panicky, and God help me, but it reminded me of putting my beloved cat Lancelot to sleep and I felt so scared that I was losing Amanda too. I tried to see if she was breathing, I could not tell if she was and everyone was gone from the room but me, I was scared and was breathing so hard, my heart pounding in my ears, that I had to hold my breath to listen to Amanda’s lungs. I held my head to her chest, feeling for her breath on my face. I heard her exhale and was finally able breathe myself, but I was still concerned that the narcotic had depressed her respiration too much and I walked around holding Amanda trying to find someone to help. (this took place in a very short time, but panic skews reality, slows everything down to a snails pace). The doctor finally came back and told me to lie her down on the dental chair, I gently placed her there; her body limp, appearing lifeless, and I fearfully asked if she was she OK, and he said she was fine, just sleeping. However, with her eyes are half-open, I was alarmed.

The doctor told me that I could leave; and Amanda would be fine, so I reluctantly walked back to the lobby fighting back the sudden tears that welled up in my eyes, I opened the door to the lobby and saw Tom and the girls waiting and when I sat down, I begin to cry. Tom came over to hug me; he knows it is hard for me to witness the girls being sedated.

We both picked up magazines while Meghan and Kara played in the playhouse, and talked about movies coming out and inconsequential things, anything to take our minds off of Amanda, but we failed miserably. I closed my eyes constantly and prayed she would be safe, I know anesthesia is never to be taken lightly, and even though I had 6 surgeries, 31 hours total and I did fine, Amanda was not my biological daughter and I knew nothing about her family medical history. I did not know what to expect or how she would react to the drugs. I could not help but be afraid for her.

After 45 minutes, I was feeling frantic, and began to get up and peer through the broken window to the door to the surgical suite. After an hour, I finally asked if everything was OK, and they said Amanda was on her way out, 10 minutes later they carried her into an exam room and laid her down on there. The anesthesiologist tenderly placed her in a side lying position and told me she did great, no problems. The dentist came in soon after wards to tell me what they did.

He did all the work they had feared she needed done, they do not do the x-rays until the children are under sedation, so we were not certain if he could save her little teeth or not, some may have needed to be pulled.

A bug concern was whether her bruxism would loose the upper front crowns, he said if she was a side-to-side grinder, they would be fine, but front to back may make them fall out. I believe she is side to side, but her little mouth is closed when she does it, so I am not certain. I am hoping for side to side. He told me to be very vigilant about keeping her mouth clean.

Amanda slept soundly while the dentist spoke to me, he asked about her size and development, wondered if she was getting better since he saw her last.

I called Tom in after that, he brought Meghan and Kara in the small room with us, the double stroller half in and half out of the room. Kara was sounds asleep; looking huge in the back seat, she is HUGE; we cannot believe how big she is getting.

The doctor (anesthesiologist) came in to try to wake Amanda. He pinched her trapezius muscle repeatedly, more likely he is compressing the spinal accessory nerve plexus, (think of the Vulcan Nerve Pinch in Star trek, yes, I love Star Trek, but have never been to a convention…). Amanda she did stir, but would not open her eyes all the way, so he left to work, and said it would not be that much longer. About 15 minutes later he came back and managed to awaken her somewhat, he said we could go.

We put her in the stroller when we got home, she had no control of her neck muscles and her head kept falling forward. She stayed there 30 minutes or so and then tried to climb out, we knew she was feeling more awake, but another issue presented itself very quickly. Amanda was in pain, she kept grabbing her mouth and whining, she was so sad and began to sob, I held her, Tom held her, she scratched us and pushed away and we could not do anything to help her. We could not give her pain meds yet, she could not make her tongue work, it lolled out of her mouth, useless at that point. We had to wait for her entire body to wake up.

After a few minutes, we thought she would be happier in hr crib, but that made her cry more, so I held her like an infant and gently bounced and sang to her, she finally calmed down and let me snuggle with her. We could tell she was not used to being held for comfort, it made me sad, and I hoped that she would learn that it was OK to want comfort when she was hurting. I know orphanages do not have time to cuddle infants when they are sad or scared; it is heartbreaking to sit in an orphanage and hear hysterical babies hiccuping on sobs. You want to go to the back and pick up the babies, but you know you can’t. I tried to imagine being the caregivers there, and them knowing if they held a baby one day, the next day they may be too busy to, and it may make it even worse for everyone. Still, it is not an ideal situation, and this is where attachment issues begin for many children. Sorry, off on a tangent.

After Amanda was fully awake in mind and body, we gave her a tiny bit of water to drink, she can’t drink liquids well. We gave her a pain reliever ever so slowly and she was almost her old self 20 minutes later. I got to cuddle with her until it was time to go to her sisters Christmas choral concert. She did really well, I thought she may get fussy there, but she actually tried to sing with the chorus. She is indeed an Estonian; they also treasure choral music. I heard quite of bit of it staying next to the Soprus Theater.

Julia singing in one of the groups, she is in black, bottom row, second to the left.
After we got home, she was finally hungry, so we gave her some food and got her ready for bed. She gratefully went to sleep; she had a long day.

Since I had been up since 2 AM the night before, I thought I would sleep well myself last night, but a nightmare awakened me; I had a dream Amanda and Kara drowned in the bathtub, I saved Kara, but Amanda was gone. I woke up screaming NO, and could not go back to sleep, of course I checked on both of them, the dream left me feeling unsettled, I knew I was up from that point forward, at least is was past 4 AM by then.

I can chide myself now for my silliness surrounding dental visits, but sedation of my children will always unnerve me. I know I have a fear of losing my girls, to me they are an incredible gift, as cliché as that can sound to some folks, and I am afraid that someone so precious, so special, cannot be with me forever. I have been working on that fear since we brought Kara home, I continue to feel that by adopting another child with Down syndrome, I am being greedy, hoarding them as a miser does gold and other prized things, sure it sounds strange, but is a recurring thought I have. I know that both girls also received the gift of a family, but I feel that we got so much more; we have them! I think another adoptive parent can understand my amazement over having two new children, but many folks just do not "get it" However; my fear is something I have to work through with introspection and prayer; I know it is not rational to feel this way.

Tomorrow is the day-please pray

2008-12-02T18:16:00.006-07:00

Finally getting those mean old molars worked on, one bleeds all the time when we brush her teeth.

Click the link below to read about her dental issues.

http://ukiestoniamomto8.blogspot.com/2008/08/poor-mandy-moo-has-some-bad-teeth.html

Amanda is going in for her extensive dental work tomorrow afternoon. She can't anything for 6 hours prior, and goes in at 2:00 MT. That means she cannot eat breakfast. They say I can give her juice BUT, she can't drink clear liquids, so she can't have anything, poor baby.

Please add her to your prayers, she has to be put under, and anesthesia is always risky, I am getting increasingly nervous and need to calm myself too, she needs me tomorrow.

A call from the OT

2008-12-02T15:20:00.004-07:00

She called today to see if I had the numbers she needed. I decided to face the situation and tell her how our last meeting made me feel. Interesting that she had no clue where I would get the impression she was blaming me for Amanda's delays. I repeated back her words to me and she said she did not mean it that way, she said of course she knew Amanda had only been here a short time and she would still be adjusting, BUT she never said either of those things to me when we spoke.

I am still upset with her, I realized how much so when I heard her voice today, she did say she felt bad I misunderstood her, but I did not feel that she was sincere. It seemed more of something she HAD to say but did not want to than something she actually meant. She kept telling me that I could make complaints to her supervisor, and I told her, I would prefer to speak to her and work it through between the two of us, though she seemed very reluctant to do so. Maybe deciding I was one of THOSE parents you know.

I called Child Find and our SC after talking to her the first time and both said they could not discuss Amanda with her because we did not fill out the release allowing communication between her and them. I am not certain why she needed to talk to either; our SC said it was unusual for an outside therapist to talk to her and all she gets are reports after the fact, usually from the family. She also said any communication without the release was against the law anyway.

I did get a third call back; the OT said she would send the pediatrician and me the report with her recommendations. She seemed a little less tense, less curt. It was not easy to say how she made me feel when we met, but maybe she will try harder with the next family she meets with. I do not require that they like me or become my friend, but I do demand respect and professionalism. It would be nice though, if the professionals we met up with would try to stay warm and open, some seemed so emotionally cut off.

She is recommending that Amanda have in-home therapies because new places frighten her so much. We are getting the names of feeding specialists, a neurologist, and we already have her pediatrician and her orthopedic doc. Not sure, what else she will recommend.

The issue with her request will be DDD and ALTCCS will not want to pay for therapies that essentially are the schools responsibility, but since the psychiatrist recommends Amanda stay home until next August, we cannot get school therapy unless we take Amanda in to the school, and we are back at the "New place makes her shut down" issue. The school can send someone here, BUT TUSD is hurting financially and I do not think they would spend the funds on Amanda, I do know they would not have anyone available for quite a few months, and Amanda needs help now.

December 1 pictures

2008-12-01T22:14:00.008-07:00

Amanda the day we took her from the orphanage 6-23-08

I cut Amanda's hair, it was so shaggy and even though it was long, it did not look very good. So about 1 inch came off, and I think she looks better now. She still has three layers to grow out from her orphanage cut, you can see the results below, what do you think? I think she looks adorable, and it is a little crooked, all three girls got a hair cut today, but Meghan and Kara would not sit still for pictures like Amanda. Maybe tomorrow.

The flash washed out Amanda's face, but I thought this one was cute. :o)

Amanda's pupils get larger when she is tired. I sometimes think the doctors made a mistake about her eyes and her having aniridia, but then I see pictures like these and realize they did not.

She looks older, doesn't she?

Our little Gelfling, isn't this hilarious? I was taking the picture

and she stood up into the camera, whoops, but so cute and so funny.

Blogger personality type

2008-12-01T18:59:00.001-07:00

The analysis indicates that the author of http://ukiestoniamomto8.blogspot.com/ is of the type:
ESFP - The Performers

The entertaining and friendly type. They are especially attuned to pleasure and beauty and like to fill their surroundings with soft fabrics, bright colors and sweet smells. They live in the present moment and don´t like to plan ahead - they are always in risk of exhausting themselves. The enjoy work that makes them able to help other people in a concrete and visible way. They tend to avoid conflicts and rarely initiate confrontation - qualities that can make it hard for them in management positions.

A not so great meeting with an OT

2008-11-28T12:34:00.006-07:00

Two words condescending and accusatory.

That sums up the attitude of the woman we saw today. She wanted to know, "WHY CAN'T she walk yet”, "Why is she so skinny" "Why is she so delayed" She said this with a raised eyebrow and a look of distrust and dismay, as if something I did prevented Amanda from reaching those milestones. You know how it is though; you want to give folks the benefit of the doubt, so at first you shrug off these statements. I already told her, Amanda was adopted and had been home less than 5 months.

She asked me why Amanda could not drink from a cup, I told her how they fed Amanda at the orphanage and I repeated she spent many hours in a crib and she had no early intervention therapy, her response, "She needs to see a neurologist, nutritionist, and a developmental pediatrician immediately, something is terribly wrong with her." I thought to myself “REALLY? I HAD NOT NOTICED”. (Oozing sarcasm) I told her that was why we went to Child Find; to have her evaluated so we could begin to get services for her, she said, “What do they have to do with that, Down syndrome alone is enough to get services.” Excuse me; but nothing is further from the truth, I wish it were this easy. Apparently, she does not know that in AZ that is not the case. The CHILD, even with Down syndrome, has to have specific mental and physical delays before they will get OT, PT, and ST, or qualify for ALTCCS. WHY wouldn't an OT know this, she should. So she says, “Has she had a DDD intake yet”, I say of course I say, three days after we got home.” She repeats, then why are you just now seeing an OT for evaluation. Hello? You called us when you had the first opening, and that was on Wednesday the 26th of November, TWO DAYS AGO, almost 5 months after you got the referral. She says, "Well sometimes it takes a year to get in here", but she is asking me why we are just getting in there, is she on drugs? Grrrrrrrr, in addition to that, we HAD to get her evaluated by the school district first, to determine her delays; it is the school districts responsibility because Amanda is over the age of 3. She says “Why, why them, are they qualified, I need their names”. She had already said she knew who Child Find was, but her questions said she did not.

"Did you know she was this delayed when you adopted her" hum, yes, we did spend 18 days with her before she came home. "What is WRONG with her?" well lets see; she has Ds and Anirida, and she lived in a special needs orphanage all her life. "what is aniridia, I never HEARD of THAT?" "What was it like in the orphanage?" So I tell her what aniridia is and say; Hey, we have no idea what the orphanage was like, we were not given a tour, and in fact, all we saw was a small kitchen and a living room. We did not see any other kids, we did not see Amanda's room, her nanny, her groupa, and we saw no one but two caregivers. we know very little about her family, we know very little about her life before we brought her home, she simply says "Well, why don't you know?" (You see why I am getting hot under the collar now?)

She was treating me as if I was lying about who Amanda had seen and what we had done for her, she implied we were not feeding her enough food even though she has gained 3 pounds. The energy coming off her was disdain and distrust. Little by little, I began to feel angry at her questions and her implying I was not feeding Amanda well, and was not being a good parent to her.

I listed for her the doctors Amanda saw and why because I was beginning to feel defensive and irritated, and she rolled her eyes and said it did not matter, all she needed was our support coordinators name and the contact person at Child Find. I am not giving her the information, I hope to never see this horrid woman again, and I did call her supervisor to complain about her lack of professionalism, left a voicemail, and wonder if I will ever hear back, somehow I doubt it.

When we take our precious girls in to an evaluation, we are looking for answers, for someone, a professional, to help us help our new children. We need them to be helpful, patient, understanding and kind, everything this young woman was not.

When we see so many positive changes in Amanda and are so proud of her, it bothers us, ME, to have some judgmental young woman tell me we/I am not doing enough. Amanda is not dying of starvation for heavens sake, she is thriving, she is happier now than she was when we met her, seeking love and attention and today she stood up in the middle of the floor, no support, and it was awe-inspiring. It is the small pebble that sometimes causes an huge avalanche, and it is the tiny steps that are needed to improve our girls lives, why can't others see the small miracles we do each day, and why is it that they only see the negative.

The OT could not fathom Amanda’s life before she came home, good orphanage or not. It was not a loving family who took care of her, she did not get the therapy she needed to be stronger, smarter, healthier, as much as they may have loved her in Estonia, and I hope they did, she did not have a mama and papa. It makes a difference, and if they want to label Amanda failure to thrive, fine, but SHE IS NOT, she is thriving, growing, changing, and damn it, the paperwork The oafish OT had was from July 18th, right after we arrived home. As far as I am concerned, anything written then is no longer accurate.

Thanks for letting me vent, I was so upset, I could not see straight after that appointment. My poor husband was getting a crown on a tooth he broke and grumpy about the $480 he had to pay for it. I called him all upset and he was in no mood to hear it, but he too is weary of so called professionals who think they know more about our children than we do. He does not want Amanda near the woman again either.

We have both decided, it is time to find positive people to deal with where our girls are concerned, no more of these burnt out people who only see the bad in the world, we need someone to celebrate every tiny victory with us.

Forgot to mention

2008-11-25T19:31:00.001-07:00

Our Amanda is turning yellow, apparently carotene will settle there, and I guess all the sweet potatoes, yellow squash, and carrots she eats are having an effect on her. And yes, the white of her eyes are WHITE. She is OK, but with yellow hands and feet. LOL

Amanda is 4 months old

2008-11-25T12:26:00.005-07:00

Eating her lunch after our appointment.

Well, according to the folks at Child Find, that is her developmental age. We just got back from her evaluation, and yes, I agree with them, Amanda is very delayed, she can crawl and sit up, so she does have motor skills that are beyond 4 months, but in everything else, yes, she is very much like a tiny infant.

After much discussion, I admitted to the very nice staff (An OT, OT, ST, nurse, and psychologist) that I do not feel it is prudent to send Amanda to school in January. She is making tiny steps towards attaching to us, but sending her to a school now would just confuse and scare her. The psychiatrist agreed with me, we should wait until she has been home a year before sending her to school.

We discussed sending her to the Myers-Ganoung Project Able because they have children with profound special needs in the classroom, and they feel she would fit in better there. I do not like the idea and this is my issue with it; I am of the mind that if you want a child to model peers, putting them with children with severe delay (most more delayed than themselves), that they would not progress and could perhaps regress as they model the behavior and mobility of the children they are with. This was the reasoning we used when we placed Meghan in fully included Kindergarten. We could see that she wanted to be like the children she spent her day with in her project able, most only there for slight speech delay.
Amanda came out kind of yellow in the original of this picture, so I did a color correction, check out her eyes, LOL, they are grey blue normally. :o)

I am happy to say that for the very first time since we came home with her, Amanda sat in the tub and did not cry in terror. She even splashed and actually enjoyed herself!

Small but very rewarding steps.

A dirty but a happy face

2008-11-23T22:13:00.003-07:00

Amanda is a hard person to photograph, but when she smiled, she is just so adorable! She was giggling at me and having such a good time here, and yea, she just finished eating, and we have to get new bibs.

She goes for formal evaluation Tuesday, part of me wishes they would see how far she has come, but most folks fail to notice what we do, we are not going to get glowing reports, but at least she can start services.

Things that make us smile

2008-11-18T15:50:00.006-07:00

Amanda loves the rocking dog, but she has not figured out how to climb up on it. I have been helping her step by step, but so far she has not made the connection on her own.

I am certain we will address her lack of mobility at her Child Find appointment next week. She is severely delayed in motor skills.

I think the small things she does show how well she is adjusting, after lunch, she creeps to her crib for her nap. She does not always sleep, but she seems to need that time alone to re-energize regardless.

Thankfully her cold is almost gone and she is not the snot machine she was. My goodness, but she can create a lot of ...mucous.
I cute her hair a little bit, trying to keep it out of her face, I will be glad when it is all one length and I can put clips in it. Or little bows, maybe even pigtails?

A very good friend is in Estonia right now adopting her sweet daughter Alina. Their court date is tomorrow, please pray all goes well for them. Alina is their 4Th Estonian child.

Getting used to being in her new home

2008-11-08T22:59:00.000-07:00

It is so exciting for me to see Amanda come alive before my eyes, I know that there is much to be learned about her, but lately, she has come to me to be held and tickled. She has begun to trust me enough to lie back and be held like and infant, at first she would peer up at me with a furrowed brow, and now she smiles up at me with a twinkle in her eyes. What a privilege to see this transformation in her.

She is beginning to show emerging skills in playing and spends all day saying mama ma and Dada, also bababa.

She spends less time with self stim behaviors and more time wanting attention and love. PTL for this, I have been so worried about how shut down she was. She still does have issues, it takes a lot to get her to come out of her stupor and play, but each time it takes less time.

Her giggle is musical and always brings Kara and Meghan to our sides, Meghan adores Amanda.

Can you say hallelujah with me?

The word for today is HOPE.

Tropical Tree Frog Costume GIVEAWAY!!!!

2008-11-02T15:31:00.000-07:00

Tropical Tree Frog Costume GIVEAWAY!!!!

Christmas Angel Tree Program

2008-11-02T12:55:00.000-07:00

Reece's Rainbow began their Angel Tree program on the 1st of November. Since 2006 this has been a major fundraiser for this Down syndrome adoption charity.

You can make a donation towards an individual child's (children) grant fund. Every cent donated remains in that child's grant fund until they are adopted. This year there are 100 precious children, all with Down syndrome, who desperately need forever families, some who will soon face institutionalization.

Amanda received donations in her Reece's Rainbow grant fund which helped us with the costs of her adoption. Donations like these make a huge difference in a family to afford adoption, it also helps a family commit to a child who has a large grant. Please give generously.

Please remember that there are other places who offer individual family grants as well, such as Gift of Adoption Fund, they have helped our family adopt both girls, and have been very generous with us. We could not have completed Kara's adoption without their help, and they continued to help by awarding us a post-adoption grant that helped us pay off $2500 of the $7,000 we still owe in adoption debts.

This holiday season, instead of buying another DVD or CD for a gift, please think about giving the gift of a forever family to an orphan. Please donate today.

Manda Moo is not digging Halloween

2008-10-31T19:25:00.000-07:00

Video of the girls

2008-10-28T21:37:00.000-07:00

You can see Amanda deciding no more push-over for her! Meghan and KAra can mow her over, Amanda needs to walk to keep up!

Amanda's first Buddy Walk

2008-10-27T11:00:00.000-07:00

Wendy and Amanda, Amanda took to Wendy immediately, it was very sweet to see her do this, she does not like many folks. I posted these pictures on Meghan's blog, but wanted to post here for folks who only read Amanda's.

I think all the people really bothered Amanda, but she did well.

One thing for today

2008-10-26T08:02:00.001-07:00

I was reading this website today and came upon this Estonian proverb:

The mouth is the interpreter for the heart.

So true, so very true.

The mouth is the interpreter for the heart. part 2

2008-10-26T07:39:00.001-07:00

I was not going to say anything about this, in fact, I saved it as a draft for a few days, but this needs to be said, and I guess I will jump in with both feet and get it over with.

The mouth is the interpreter for the heart.

Considering my feelings lately when it comes to the unkind things that folks say and do; this proverb speaks to me. My reprimand for saying how I feel is to be ignored absolutely and completely by people I thought were friends, people who I helped when they asked for it, not expecting anything in return except their friendship.

I had a couple of folks come to me upset about something and we talked about our feelings, I have never heard from either one again. It saddens me to think they were on a fishing expedition, or they did not mean what they said, sadly it appears this is so. I suppose it serves me right, I was not all that kind about the situation, we reap what we sow.

The mouth is the interpreter for the heart.

I wonder when these folks decided to get information from me, did they tell themselves that is was for the greater good? Did they consider how it would affect me and my family? Nothing else illustrates how a person feels about you that when they do something this unkind to you.

I think the absolute worse expression of this was leaving comments on a blog and having it removed, not once, but three times (different comments, all benign, things like: I am happy for you, or what a cute picture) It was giving me the message, I was not welcome there, and I no longer read the blog. How sad, but by words and actions of others, I got the message, you are not one of us and we do not care to be associated with you.

The mouth is the interpreter for the heart.

Does it matter? I believe it does, I think folks do and say things in cyber land they never would in a face-to-face encounter. Awfully cruel things, wounding things. I love my Internet friends, I cherish their friendships, but I do not cherish the pain they cause when they punish me for saying how I feel. They not only turned away from me, but the children I adopted, and my precious little girls did nothing wrong. I suppose I deserve that for not toeing the line, for being different, I suppose it makes it OK, and it is such a Christian way to treat me and my family.

The mouth is the interpreter for the heart, and actions sometimes speak louder than words, thank you, all of you who decided we were unworthy, for letting us know how you truly feel about us.

A sincere thank you to those who love us regardless, we love you too.

Stage one of the Pre-school screening process complete

2008-10-22T17:00:00.000-07:00

I took all three girls to Child Find today, I honestly do not have a babysitter for my children, no family or friends to watch them. My friends all have FT jobs, at least those who would watch them, so do my sons. So we always go as a huge group.

We sure get a lot of attention when we go places. Inevitably I am asked if the girls are my grandchildren, makes me feel like I am 60, actually, it makes me feel really bad, but that is vanity speaking, isn't it? I still cannot believe the woman looking back at me from the mirror is me, I do not recognize her.Anyway, back to topic, I always tell them the girls are my daughters, then they ask if they are adopted, I say yes, two of them are, the oldest is homegrown. I like the looks on their faces, shame on them for assuming huh?

The ladies at Child Find are very sweet, funny there is not one man working there. Kara went to Child Find in April and again in June, they were all amazed at how much she has grown, we are too. They thought Amanda was just precious, and of course we do too. We turned in her paperwork and she has another appointment for the official evaluation at the end of November.

Meghan went through the office closing doors...I am telling you, this week is not a good one for her. I don't know why, but she is being a peel.

Fluid on the ears, well ear

2008-10-21T15:28:00.000-07:00

Amanda did not pass her repeat hearing exam because she had fluid on one ear (Kara had it in both), I was wondering if their colds were going to skip their ears, poor kids, so Thursday we are off to the pediatrician to get antibiotics. We simply cannot go tomorrow, Amanda has her Child Find appointment and we cannot miss it or it will be another 3 months before they can evaluate her. She passed the previous test with no issues other than not wanting to participate with the booth test. This time she did well in the booth, go figure...she does not appear to be in any pain, thank goodness.

Renal ultrasound is done

2008-10-17T22:16:00.000-07:00

Our day began with a quick breakfast, throwing clothes on the girls and running out the door. Amanda's appointment for her renal ultrasound was at 10:00. I sent out a plea for prayers because I get very nervous about scan, especially where cancer is in the mix. I have had 5 cancer related scans, my heart still flutters when I think about them.

Then there is childhood cancer, and a very thorough mommy who read all about Wilm's tumors and the chemotherapy and radiation given for them. Oy, saying I prayed before bed, when I woke up and at stoplights is not exaggeration.

We had to wait for 35 minutes before they called us back. We got a very sweet technician who was kind and gentle with Amanda. Amanda was trembling in fear and I was holding her hand and soothing her, she calmed down in about 5 minutes, I think because the technician was so sweet to her. (no this is not Amanda's kidney, I simply wanted to share what the image looked like)

She scans the first kidney and I looked intently, it looked like a regular kidney to me, smooth shape, no lumps, bumps, or cysts anywhere from any angle. I could breath, was I holding my breath? So far so good, thank you HF.

We turned Amanda on her other side and scanned the second kidney, still looked fine, but to the right was her full tummy, which looked black, and to the left was her bowels, which looked white, the tech said, because they were full of air, which I know is true, Amanda has a lot of gas. The second kidney looked good, not as smooth as the first, but the tech did not look concerned. She checked Amanda's bladder next explaining that aniridia sometimes is associated with malformations of the urinary system. Amanda does void her bladder in a huge gush, very peculiar, so I would imagine something is up there?

I said I was relieved and was reminded that Amanda would need to come in every 6 months for sonograms of her kidneys because of her aniridia, now I thought they believed she had it, but the medical professionals are saying she DOES have it. I figure they won't know for certain until they do the karyotype. However, her irises are not normal, no doubt about that, so I suppose they do know better than I. Until a few weeks ago, I never even heard of aniridia.

We will know everything is 100% OK once the radiologist reads Amanda's scans.

Amanda thinks it is fun to grab things and pull hard. Like my hair, dozens of times today, my scalp hurts, and we will have to work on this one. Killer grip, yes indeed, she is STRONG! Kara also was the recipient of hair pulling from little sis. I put her on the rocking doggie and she did this, it made me laugh, and she was so proud of herself. I think it is time to trim teh girls hair, it is not fun, they fight us, refuse to sit still and all of us get sad afterwards...

Book available on post-adoption blues

2008-10-16T15:56:00.000-07:00

http://adoption.about.com/od/guidereviews/fr/postadoptblues.htm?nl=1
I know I can use this book for certain, I wish I had it 7 months ago! If you are adopting or have adopted, I think this should be on your must have list.

Seems I have a few books to buy, now if only I had time to read them.

You can buy it here: BUY BOOK

New pictures

2008-10-16T14:08:00.000-07:00

Amanda is looking right at me in each picture, if you remember, she did not do that before, it is so good to see this change for the better, don't you agree?

Yes, we are still fighting the Battle of the Booger. Both Kara and Amanda hate having the noses wiped, and I use a warm, soft wash cloth too.

Attachment disorder?

2008-10-16T08:18:00.000-07:00

I can see how watching a 20 second video of Amanda would lead folks to make that assumption. She does not self-stim all day, she explores the house, sits in our laps, plays with us, plays with Meghan, and is a relatively happy little girl.

Yesterday after I read comments and thought about my plea for advice, I thought, asking for advice from a very limited view of who Amanda is. It is like the blind men with the elephant being asked to describe it from different points of view. Truly unfair of me, I think my wanting answers to help her ASAP is what drove that. I called autism groups a few weeks ago, and a neuropsycologist and they all agreed, we should wait a year before diagnosing anything, it will take her a while to adjust to her new home and family, a new language, and a completely different life. The neuropsychologist agreed to see us, but she fell ill on the day of the appointment, and since Amanda was also ill, we thought it best to wait until she was more like herself again.

I did not want to hear that we should wait, I wanted answers NOW, but truly, is that fair to ask of anyone? Not really, who Amanda is now, and who she will be in a year is something no one can predict. The positive changes we see in her daily encourage us, I will try to get some pictures, she has so many different smiles, silly faces, and is a playful little girl, but she does not like her picture taken, so it is hard to capture.

I have had wildly different answers to my question, and as I expected, they left me feeling rather inadequate (my issue) and just as confused as before. We made up our minds to treat both Kara and Amanda like infants and allow them to develop though all the stages as an infant does. We have seen that Kara has done this, albeit, very rapidly, in months instead of years, and we felt we could do the same thing with Amanda. Treat her at the developmental age she is currently, which I would say is 6-8 months at this point.

She getting cuddled, coddled, and fed like an infant. She is fighting a cold, and this made her self-stim behaviors increase, but I expected that too, just as a toddler who gets ill wants his pacifier again, or a bottle, or to breastfeed more. They want what comforted them before, and for Amanda, it was self-stim behaviors. She is not used to people cuddling her when she is ill, I am certain she was left in her crib. I can tell by her constantly crawling to her crib and standing to be put in there. She only stays 5 minutes before she decides it is not a great idea, and we take her out and hold her.

I am also a very good reader of body language and know when she has had enough and needs space. I let her have what she wants, she will go off and play and return in 15-20 minutes to be held again. Today she came when she was called and asked to be held. She also signed more food, and said Da when I asked her a yes or no question, makes you wonder what other surprises she has for us. Hopefully more good ones than bad (no more bad medical news for our baby girl please)

She is making progress, we think it is remarkable, the self stim behaviors are trying on our nerves, I have been singing with her and she thinks it is the funniest thing ever, maybe it is the beginning of the end for the self stim (most of them). I thank every single person who gave us advice, each of you gave me pieces of a puzzle that will be easier to solve now. I apologize for not depicting the entire picture when I asked for your help.

Another video

2008-10-15T16:33:00.000-07:00

Don't know about you, but I think I got my first eyeroll from Amanda, LOL. :o)

New picture

2008-10-15T14:30:00.000-07:00

Gotcha day for Amanda June 23.
You can see how much her hair has grown, and it has been trimmed once too.

I finally got to take some pictures today, I loved this one of Amanda. :o)

Replies to comments

2008-10-15T13:46:00.000-07:00

Thank you to everyone who answered my questions here and via email, it helps to get different perspectives.

our daughter still occasionally rocks after 1.5 years home, we gently stop her, it is a coping mechanism that they must be weaned off of when tired or frustrated.

She looks EXHAUSTED in this video and appears to fall asleep during it or have a mild seizure? She about falls over and closes her eyes for long periods of time. Could she have a sleep disorder that is causing such exhaustion she appears autistic and touchy during the day?

hi Amy,

She is sick, she has a cold, so she really is tired, but she just woke up from a nap there, so that may also explain how she looks too.

Amanda drops her head all the time, she is not sleeping, she hangs her head to breath deeply and grind her teeth, it part of her self-stim pattern. I was sitting right in front of her, so I know this for certain. Though seizures are definitely not out of the question for her. She will see a neurologist for her plagiocephaly and aniridia, he can do as many exams as are required to diagnose her.

watch video-11 seconds through 17 seconds in-eyes closed falling asleep!!24 seconds-head falls over, she trembles and then pops back out of it. Please check for a sleep disorder or seizure disorder. Show your doctor this video.Amy

I can send him to the website to watch her, I actually did this video for a friend who is having a doctor look at it for me. (thanks Dede)

Video and baby picture

2008-10-14T20:42:00.000-07:00

This is for Dede, you had asked if I had images showing Amanda's Aniridia, this shows it very well. (Isn't she darling, my sweet Amanda, I have no idea how old she was here, isn't that sad?) The ophthalmologist said she has a partial expression of Aniridia. You can click to enlarge this picture. Her left eye (right in the picture)shows the irregular edges of the pupil.

In her video if you turn up your sound, this is a quiet form of her "singing", you can also hear her grinding her teeth, it is a terrible sound. You can also see Kara's Buddha Belly, and her huge belly button, it is apparent that she had a hernia when she was a baby. Also thought to mention, my husband and I are talking about filming Amanda sideways, we can't find a program that rotates it, so I filmed her again with the camera upright,we are talking about the camera, not Amanda.

Gosh, this is frustrating-please help

2008-10-14T16:52:00.000-07:00

I called the geneticist today, no openings until May. We only have one Geneticist in Tucson, ONE! I made the appointment, but I will look into getting an appointment in Phoenix for her, meanwhile, I am still waiting to hear from the Pediatricians office about the ultrasound.

Amanda did not sleep well last night, vocalizing from 2 AM on. She and Kara finally went down for a nap, Meghan and I sat down to do her HS'ing, and she is taking a little break. So I am updating Amanda's blog.

I am asking everyone who adopted from Europe for advice about Amanda's vocalizations, it is so loud and upsets Kara and Meghan; frankly it is wearing thin for all of us. She is held, cuddled, fed, and dry, there is no reason why she should be agitated at all. As soon as she climbs down from our laps, she begins the vocalizing while rocking. I have been picking her up to see if she wants to be held, she will scratch or pinch, and push away, so I know it is not what she wants.

I need suggestions about what to do about it, how did all of you, those who adopted from Europe, help quell this behavior? HELP? Check out Kara's blog for another question on behaviors.

6th Picture folder

2008-10-13T21:13:00.000-07:00

Meghan in 2005

There were other pictures in this folder, all of our garden when it actually was blooming... this is the first picture of a person in that folder, my Meghan!

She is decked out head to toe in Gymboree, what a surprise! LOL

Sweet Amanda has been home 3 months

2008-10-11T12:33:00.000-07:00

I finally got a call back from the pediatrician about the peds geneticist, I have the number and will call Monday. Not really focusing too much on the Aniridia, we are trying to get her through her first cold. Other than a nose which will not stop running and a low grade fever, she seems fine. I just get concerned when my little ones fall ill.

Sadly we had an issue with her insurance and spent the last week fixing that, I also have to call Monday to make sure she has the same primary care doctor listed on her files as Meghan and Kara, for some unknown reason, they switched her to a new one.

She seems to need a lot of cuddling with her cold, she stands up and asks to be held a lot, and I am not complaining a bit. It is good to see her coming to me and Daddy for comfort, I think prayers are being answered here.

We canceled her appointment with the Neuropsychologist because she was sick and we need to get the Aniridia tests out of the way first. Gillespie Syndrome does list autism as one of the issues folks with it have, so we need to see what we are facing here.

Doesn't change how much we adore her, how sweet yet feisty she is, and how well she seems to be doing.

Her favorite thing is to go out and sit in the sun, she adores the sun, the warmth of it. She is always so cold to the touch, no body fat to keep her warm either.

She has some fat on her thighs and belly now, it is good to see, and her pulling to a stand all the time is helping her quads, hamstrings and calves develop.

She is very strong, a wiry strength with a killer grip. I always think about Andrea saying watch those earrings, which I do, I stopped wearing them. The other day Amanda ripped the collar off my tee, it is ruined, but who cares, it is only clothes. She has a habit of grabbing your clothing when you are lying her down, I think it scares her to be lowered after we hold her.

Her brothers all agree she acts less scared and more outgoing, today Julia said "Mom, she is acting more like Kara now" and she is right, it happens so slowly, you do not notice until all at once.

No pictures, I am sorry, Julia has her camera with her most days, and mine is broken, and only 2 years old too, how depressing. I dropped it in Estonia, probably broke a connection somewhere. Looks like we need a new digital camera, maybe for my birthday? (hint to DH here LOL)

Pin pillow contest

2008-10-10T08:10:00.000-07:00

Thanks to an anonymous donater, Stitch Pink was offered this adorable pin pillow.

The little ballerina was stitched, and made into a pin pillow.
Included also, is the heart pins shown in the picture.

If you would like to win this cute pin pillow -What you need to do is leave a comment to this post (anyone can leave a comment), and on Oct 17th, a winner will be selected! NonBlogger entrants must have an email to be entered.

Please if you could, advertise on your blog for this contest, it would be much appreciated. Enter the contest here

Answering comment day

2008-10-09T08:29:00.000-07:00

Jennifer said:
I hope you get some answers soon. Remember, this won't change the Amanda you love!!

Jennifer, absolutely, she is still our same special girl, but we will be better equipped to help her with all her needs, and know how to protect her as well.

traceylynndel said...
You are right to find out all you can. Better to know too much about something you don't need than find out you don't know enough. It also enables you to ask the doctor intelligent questions once you do find exactly what she has. I'll continue praying for sweet Amanda and her family too.

I know that forewarned is forearmed. Thank you for your prayers, we have not heard about her referral yet, it is time to call the doctors office.

carol said...
Kris, I am so glad that you have the access to the internet so you can search. Amanda is very lucky to have a mom that is such a good medical detective. I hope you find all of the information you need. Good luck Kris. I wish there were more people like you out there that take the time to find answers to their problems. We cant always leave it up to our Drs. as the dont always have the time or energy it takes in finding all of the information needed.GOOD LUCK

Carol, thank you for always supporting me and my family

Christina said...
Kris,I can relate to the frustration you are going through. It reminds me of our experiences with our son. It seemed like every time we saw another specialist, they found something else wrong! I started to feel like there was some form they were trying to "check" every box on! It never fails, whenever I hear the words "odd are your son does not have this/that", from a physician, I know to get ready, prepare, and reasearch because "odd are" he WILL end up with it. I know it can be frustrating, but you are being a great mommy to Amanda, and doing the right thing to reasearch and be prepared. I will be praying for you and your sweet baby girl!
S.P.S. I love the pic of Amanda at the top of your blog -- is that a new one?

Christina, exactly, I feel the same way about sweet Amanda, the dentist, the heart doctor, the eye doctor, at least her hearing was normal. I am almost afraid to take her to another specialist, what will they tell me about her?

The picture of her is new, yes, I love it too!

WheresMyAngels said...
Never heard of this. Also has she been tested for celiac's, that could cause weight issues. Mercede was always a very thin child. Her heart was part of the problem but she also has a very high metabolism because she eats more than all my kids.Prayers that you get some answers.

She has not seen the GI doc yet and I know they did not test her blood for Celiac, she does not eat any wheat products, so the test would not be accurate anyway. I guess after she can chew and eat breads, we can test her for Celiac.

deanie said...
Kris, your family is always in our prayers. Amanda is such a precious Angel and has so much to teach the world. We are praying that her problems are not life-threatening and that God cradles you all as Amanda goes through these tough times.

Thank you Deanie, she truly is a very special little light in this world. She is beginning to giggle and interact more and come out of her funk (depression from being in a new home is likely) She does continue to exhibit autistic behaviors, but at least she is coming to us for love and attention. As long as she will be OK despite all her special health issues, then I am OK too, the main thing I am concerned about is the Wilm's tumor, if she has it, or is she susceptible to it.

GoldenAngelsWorks said...
Prayers for our dear Amanda... Poor little thing just keeps having more added to her....I pray for the best outcome on this... I pray also for your family to receive comfort and peace that God is in control and knows what is going on.

Thank you Dawn, I know with prayer she can be OK.

Randy and Sheila said...
I don't have this condition but the eye dr is always saying that my pupils react too slow...I got to wear sunglasses at school and thought I was the coolest! I hope it turns out to be just an inconvenience for her too.

I hope so too Sheila, that would be the best case scenario for her.

Pediatrician visit

2008-10-03T13:41:00.000-07:00

Amanda saw her primary care doctor today, he looked at her eyes and we talked about the findings of her eye doctor. He will be ordering her referral to see the geneticist and will order the ultrasound to check her abdomen.

She was laying there quietly contemplating the doctor as he talked to me. Very strange behavior for her, she seemed calm, she was not gnashing her teeth or breathing hard. Seems she trusted him, we do too, or he would not be her doctor.

She and Kara are napping, Meghan and I need to homeschool. Will update her blog when we know more.

Gillespie syndrome?

2008-10-01T11:13:00.000-07:00

Yesterday I posted to groups I am on about the newest scare we have with Amanda, my heartfelt thanks to those who responded.

I have to tell you I am scared for Amanda, I am trying not to borrow trouble, but Aniridia can be life threatening for her. Since she is so thin and fights to gain weight, the possibility that there is something wrong is high. Cancer takes life-giving nutrients and takes it in, but does not allow them to keep the "host" body strong. Amanda eats a lot; she eats as much as Kara, who is getting overweight. Her thyroid is within normal limits, so it is not that.

We have many doctors to see still, GI, ENT, a nephrologist, and a geneticist. Every medical professional who has seen Amanda has asked if there was something else going on with her other than Down syndrome, and of course we won't know until she sees every doctor she needs to see.

I have been reading about Aniridia, and it is possible that Amanda could have Gillespie Syndrome, which is quite rare, but she does not have complete Aniridia, but partial.
http://www.socialstyrelsen.se/en/rarediseases/Gillespie+syndrome.htm This of course would be a better case scenario for her. Her risk of renal cancer would be no higher than any other child's.

Since most cases are in Sweden, and since Amanda is from Estonia, not that far away, the possibility is there. I wrote an organization in Sweden for more information, yes, I know, perhaps jumping the gun? I am relentless when it comes to finding answers, I think I should have been a detective.... Yes, Amanda having Gillespie Symdrome is all supposition, but when either I am facing a health issue, personally or in someone that I love; my first response is to learn about it, and that is what I am doing now.

Please pray for Amanda (and maybe us too)

2008-09-30T18:15:00.000-07:00

You know, how many more things can a poor little gal have?

Amanda saw the opthamologist today, we were really worried about her strabismus, it is pretty severe, but probably because she is extremely far sighted, she will have to wear glasses, we tried some on her today, ahhhhh, she looks so cute! Doc says if she needs them, she will leave them on, I hope so. With her face shaped the way it is and that tiny nose, her glasses do not even rest on the bridge.

Something had always bothered me about Amanda's eyes, since that first picture of her on RR, I thought they looked abnormal, it was the size of her pupils that bothered me. They are huge, I thought they must be giving her meds to make her sleep (Benedryl). Still they do not constrict (get smaller in bright light) as much as they should, but I thought they were getting better.

The opthamologist said it worried him, her pupillary light response is delayed and one pupil seems to bleed into her right eye. He then asked if we knew if she had another genetic condition in addition to her Down syndrome, and we said no, we did not know. He said he thought she had Aniridia.

He wrote this to her pediatrician-verbatim:

Amanda has REALLY LARGE pupils and on my exam I am concerned that she may have a partial expression of anaridia. The raises the possibility of Wilms tumor. I would suggest that a kidney ultrasound be considered and an evaluation by a dysmorphologist.

From this website: http://www.aniridia.org/conditions/

Aniridia literally means "without iris." In most cases this is the most visible sign of the condition. However, aniridia is caused when the gene responsible for eye development - the PAX6 gene - does not function correctly. This causes the eye to stop developing too early and when the baby is born most of the eye is underdeveloped to some degree. Some aniridic eyes are more developed than others and therefore it is difficult to say exactly how aniridia will progress in an individual, however, in general people with aniridia are prone to.

From Wikipedia:
Aniridia may be broadly divided into hereditary and sporadic forms. Hereditary aniridia is usually transmitted in an autosomal dominant manner (each offspring has a 50% chance of being affected), although rarer autosomal recessive forms (such as Gillespie syndrome) have also been reported. Sporadic aniridia mutations may affect the WT1 region adjacent to the AN2 aniridia region, causing a kidney cancer called nephroblastoma (Wilms tumor). These patients often also have genitourinary abnormalities and mental retardation (WAGR syndrome)

So after he told us about that, he asked if we knew about her family history, which we do not, but maybe can find out, I have to ask our agency? If it was hereditary, perhaps it is not as bad? Still, she will need karyotyping to determine if she does indeed have another syndrome. That said, I just don't feel like Amanda has Anaridia, but we will find out soon.

Kara does not need glasses, he thinks her Nystagmus is associated with her Down syndrome, and her strabismus is mild. Thank goodness for that!

Both girls go back in 6 months.

Hey Alice

2008-09-30T13:00:00.001-07:00

You read my blog, now you get to do the same thing! :o) tag-you're it!

Tag-you're it

2008-09-29T10:24:00.001-07:00

Three blogs I read all the time have asked their blog readers to participate, so here is ours.

20 years ago, I had been married 10 years and was the mother of 4 sons, Fred 11, Terry 9, Eric 6, and Brian 2. My father suffered a stroke and was in the hospital, it was hard to see such a strong man ashen and unable to move, he recovered well enough to take his long walks again, but his lungs were damaged and he passed away 1 year later.

I worked full time at a health club working as a fitness instructor and weight trainer. Brian came to work with me and stayed in the daycare. The girls there loved him and took him out to movies and ice cream; he was and still is a charmer. My husband was teaching 50 miles away and he was unable to go to any of the kid’s functions. It was hard, but we survived. I was taking some classes at the community college and teaching one class for them, tuition was free.

15 years ago, I was 32, I became a mom to 5 and had my first daughter. Julia. I was president of Southern Arizona Fitness Association and Co-chairperson of City of Hopes "Workout for Hope". I ran the group fitness program and work and had a terrific staff whom were like family to me. I loved my job for the most part, my boss was difficult, but bosses often are. My husband was looking for a job in town to help more with our 5 children. The 50 mile commute was wearing on all of us, as we often had to take him to work.

10 years ago I was 38, Fred and Terry had graduated from high school, Terry had moved out pretty much after graduation, Eric was in HS, and Brian was in middle school, Julia was going into Kindergarten. I was working at another health club along with the first one, teaching 16 classes a week, all I did was teach, and it was great not getting phone calls from instructors 5 minutes before class to tell me they could not teach. I had my time and life back. Tom was working in Tucson and was finally able to go to parent teacher conferences and the kids school performances. I remember being upset that I gained 5 pounds I could not lose. :o) A whole 138 pounds, egads, I wish I weighed that now. Perimenopause was beginning, yippee!

5 years ago I was 43, Eric graduated HS in 2000, Brian was in HS. Julia was in 5th grade. I was diagnosed with breast cancer and weaning my then 2-year-old daughter Meghan so she would not be too upset when she could no longer breastfeed after my mastectomy. I went through 4 months of chemotherapy and attended my first cancer retreat. I took over a breast cancer support group after the owner left, I still run that. I had to fight to keep my job, apparently someone with cancer is a liability to businesses, so many people get fired when they are going through cancer treatments, and it is perfectly legal to do so if the employee is part time, like I was. FMLA does not apply for us. In December I was so grateful to still be alive I often had tears of gratitude in my eyes. I attended Nutcracker with Julia and sat there wiping tears away, I was also ecstatic to be able to see LOTR! Small things, everyday things, were more meaningful than they were before. My hair was one inch long.

3 years ago I was recovering for reconstructive surgery, I got a new job teaching at a new club, Eric took Meghan to school M and F. Fred got a job doing IT for a mortgage company, Terry came back home for a while. Eric was going to college and working for a resort, Brian was living in his first apartment, and going to college, Julia was in Middle School, and Meghan was going to Project Able preschool. Tom was talking about getting his masters degree. Eric and Fred were still living at home and I enjoyed having someone here all day with me (when they were not working or going to school)

One year ago we were getting ready to travel to Ukraine to adopt Kara,. Fred had lost his job at the mortgage company, First Magnus, they gave the employees one days notice, and many never got their final paycheck. Eric was put in charge of special events at his job, Terry was still working and trying to go to school. Brian was going to school and acting in many plays. Julia was a freshman in HS and Meghan was in 1st grade, home schooled through AZVA. Fred and Eric had moved out a year before that, and we were still getting used to not having them here. They did and do come home every week to watch our favorite TV show and have dinner. Life was centered on fundraising and paperwork, taking care of our girls at home, and enjoying being a family. Tom finished his master’s degree.

Today we have two new daughters, are adjusting to caring for two three year olds. Our sons are doing well, Julia is a sophomore, Meghan is in 2nd grade, and I am not working at all. I lost my teaching job after we adopted Kara, apparently I was not very reliable going off to Ukraine to adopt. I miss teaching, did it 25 years and feel like an integral part of me is missing now. Tom got a PT job , very PT, teaching at an online school. He still has his FT job. I take the girls to their appointments and home school Meghan.

Tomorrow I take Kara and Amanda to the eye doctor.

Gift of Adoption Giving Circle

2008-09-23T23:11:00.001-07:00

When you are considering adoption, one of the first things you think is "I can never afford it" thankfully there are grant foundations out there to help families realize their dreams, Gift of Adoption Fund is one of them.

From the Gift of Adoption Fundraising Page:
Amanda is a beautiful three-year-old girl who has lived her entire life in an Estonian orphanage. Amanda has Downs Syndrome. Unfortunately, many children in international orphanages who have Downs Syndrome are transferred to mental institutions at the age of four. The odds of them being adopted after that are extremely low. Knowing this, Thomas and Kris decided to act.

Toms and Kris have four grown sons and two daughters, their youngest is Meghan and she has Down syndrome. In 2007 they adopted for the first time when they welcomed Kara into their family from the Ukraine . Kara also has Down Syndrome. Knowing there are so many more children like Kara who are in need of the love and security of a family, Tom and Kris soon began a second adoption journey. Financing a second adoption so closely on the heels of the first proved to be difficult. After hosting several fundraisers, soliciting family and friends, and starting a small home business, they were still short. Because time was of the essence, they turned to Gift of Adoption for assistance. A grant from Gift of Adoption will provide the last bit of funding needed to give Amanda a forever family and allow her to be all she is meant to be.

With your help, we can fund the grant that gives Amanda a family. Any amount raised over $3,500 will be used to unite even more children with forever families. We are also excited to share that if we reach the goal of $3,500, all contributions made to this page will be matched 100% by the Ralph and Eileen Swett Foundation, doubling the impact of your contribution.

The Gift of Adoption Fund is a national 501(c) 3 organization that inspires adoptions by giving grants that put adoption in reach: in reach for the 140 million children worldwide in need of families, for qualified parents yearning to adopt, and for those of us who want to do something concrete to move a child from a dire situation into a life of hope and promise.

Gift of Adoption was co-founded in 1996 by adoptive parents Gene and Lucy Wyka. Realizing how grateful they were to be able to afford the time and cost involved in adopting and understanding the importance of giving their children a family, they began to wonder what they could do to help bring more children home to a loving family. They began a foundation in 1996 with a single focus – to put adoption in reach for more children and families.

Any U.S. citizen adopting from anywhere in the world (domestic or international) who has an approved home study from a licensed agency or social worker is eligible to apply. Financial need must be demonstrated. The number of biological children or adopted children in the home does not impact eligibility. Gift of Adoption does not consider an applicant’s marital status, gender, race, creed, national origin, or religion when reviewing applications.

For more information on Gift of Adoption, please visit http://www.blogger.com/www.giftofadoption.org.

For more information about Gift of Adoption Giving Circles and how you can create a page like this to help unite a specific child with a family, please visit www.firstgiving.org/giftofadoption.

Our story:

When we decided to adopt the one thing that could have prevented our adoption was financing. Towards the end of our paper gathering for Kara’s adoption, we realized we needed additional finding for in country expenses, we applied for a grant from Gift of Adoption fund, and the day before we were leaving for Ukraine, we learned we were approved for this grant. It paid for the last two weeks in Ukraine, including our passport fees and orphanage donation.

We had sent our dossier in to Estonia to adopt Amanda the week we left for Ukraine, and when we returned, we learned Estonia approved us to adopt Amanda and in January our agency asked us to submit for a court date. We had no money left from all the fundraising we did for Kara's adoption; indeed, we had accumulated debt in excess of $3,000 and were in a panic, how in the world could we raise so much money in a short time?

We used income tax returns, economic stimulus money, did fundraisers and many friends donated money for our adoption. One very dear friend donated $1,000. In the end, we applied for, but we were turned down for a second grant with GOAF. We went to our credit union and took out a loan against our minivan to get the rest of what we needed. GOAF told us we could reapply for a grant upon our return home from Estonia, and we did. Thankfully, GOAF approved us for this post-adoption grant; it is a Godsend and with it, we can begin to pay back a portion of the $6,500 in adoption debts we still owe.

Gift of Adoption Fund came through for our family twice. We want to help them raise money for more families to adopt their children, and you can help with your very generous donations. Every time you read that family did not get a grant, realize this is because funding can only offer so many families the help they need. With more donations, more children will get the forever family they dream about every night as they sleep in their orphanage bed.

A sweet picture of Amanda

2008-09-19T14:51:00.002-07:00

Dirty face and all, she has just eaten and escaped before we washed her face off. She was so happy today, giggling, playing, and seeking me out for more attention. Kara, poor sweetie is not feeling well. Her tummy hurts, she has gone through a lot of diapers today.

She qualifies!

2008-09-19T14:51:00.001-07:00

Amanda does qualify for long term care, even without a diagnosis of MR, the school district has to determine that, so that is good, but it is oh so sad that she is THAT delayed.

Bad thing is, I still had to cancel her dental appointment because the finalization of her paperwork and the issuance of her new insurance card cannot be completed before then. She seems to be OK with her teeth so far, I suppose a few weeks will make little difference.

I thank all who prayed for this to come to be.

Amanda is a true AZ baby now

2008-09-18T23:20:00.001-07:00

Amanda is Estonia Amanda has a tan! I did not think she could with her skin being so white,

but she definitely has more color to it now. An look at the difference in her hair!

Amanda home in Tucson, two days ago

We have such great news

2008-09-18T23:20:00.000-07:00

Our sweetie Amanda is beginning to walk holding our hands! It is a funny walk, and on her toes, but it is SO stinking cute to witness, She is so proud of herself, she just beams. I will try to get a video of her walking this weekend.

God is answering our prayers!

We humbly ask that you pray she gets approved for ALTCCS before her dental appointment next week, otherwise we have to cancel it until she has her supplemental insurance in place. The sad thing is; she will likely get approved without an MR rating (I know, I do not like them using MR either) because she is so terribly delayed. Since the school has not evaluated Amanda, she does not have the designation of cognitive delay, just speech and developmental delay, that's all...

Pictures from today

2008-09-15T21:06:00.000-07:00

Amanda loves to play outside, she is more animated, happier, content, and loves to sit in the sun. Though when she has had enough, she crawls to the shaded areas and plays there.

She has times when she is loving, playful, and sweet as can be.

She hates seeing the camera aimed at her, she turns her head

or covers her face, and these were done without flash.Kara was sick today, she woke up with a tummy issue, and was so

unhappy all day. Poor Kara, needless to say, I did not get pictures of her.

Isn't Amanda's hair getting cute?

Kara avoiding me, yesterday she was clingy and wanted to be cuddled most of the day,

I should have know she was getting sick. Amanda looking away from the camera, and

Meghan hamming it up, as usual. She used to duck the camera like Amanda does.

Amanda getting out of the sun, she is a smart cookie.

HOPE

2008-09-05T13:09:00.000-07:00

Today I was sitting with Meghan, Kara, and Amanda. I was tickling Amanda, and when she laughed, Kara laughed, and when they were both laughing, Meghan joined in. All four of us were giggling away and I felt so incredibly blessed to be sitting there with them.

Just having Amanda interacting with us and she being happy enough to grab my head a plant a very slobbery kiss on my lips, well, it gives me hope Amanda will be OK. It may be a long road before she comes out of her shell, and perhaps she will always want to retreat into her private world, but today, she wants love and attention.

The past week we have seen more and more life in Amanda’s eyes, and orneriness we find encouraging, no we do not generally want this in our children, but she is displaying a wider range of emotions, and that is good. She gets so happy when we pick her up and kisses us and hugs us, she is less scared of new things. She even had the gumption to sneak out the front door and make her way to the van, we found her there waiting to go bye bye, her favorite thing to do in the world.

The word for today is HOPE.

For Gayla-some more pictures of the garden.

2008-08-29T23:50:00.000-07:00

Julia's Mesquite tree, story of it below.

My fountain, it used to be in the back yard, but fell over and broke, I had to use cement repair to mold the wings together again, I went to the Mexican Pottery Store where i had bought it and asked if I could get the paint used for it, he called Mexico and the gentleman who made the fountains agreed to bring me some. I repainted it and begged my family to bring it to the front yard, it took a year, it weighs hundreds of pounds and took 3 men to carry it usually, but my son Eric muscled it in the front for me, it is made of cement and re-bar.

My river rock walkway, well, I decided I wanted to lay this as a path through my yard. My youngest son Brian and his friends walked through the yard and there was dead grass all the way to the front door. Now my friend Robin and her husband were building their dream home and the fill dirt was full of large rocks, I love rock gardens, and I asked if I could take some, they said of course. I filled up the back of my old Caravan with rocks, so much so that the front end elevated and made it hard to steer, I had to drive very slowly to get home. I unloaded the rocks and thought about the garden I would make and then I thought, what about that walkway? Ah, and idea was born.

I laid out the hundreds of rocks and knew immediately that I would need more. They were building a recreation center down the road by the Community College campus. I had seen huge piles of rocks there (I admit I had rocks on the brain during that time, and looked for them everywhere, I even picked them up along the highways throughout AZ, on the way to our family reunion, to visit grandma, etc) I walked through the construction site and asked for the foreman, I got chided for being there without a hard hat, but I quickly asked about the rocks and boulders piled everywhere, he said if I got a truck, I could take them all. My oldest son Fred called his best friend and together we filled the bed of his small truck 2 times. I thought; surely this will be enough stone for my walkway. Well, no, because many of the rocks were actually small boulders, and they ended up lining the walkway instead. We took the minivan back to the pile of stone three or four more times, still not enough stone...so we finally made 5 or 6 trips to the creek bed and harvested stone from there, smooth and wonderful river rock which was the best for the walkway.
I thought for certain that after I gathered all the stone that I could do the path in a weekend or two, however 6 weeks, 33 bags of mortar, 33 bags of sand, tons of rocks and 99 feet later... I laid that pathway stone by stone. My husband, God bless him, is not a person who loves this kind of work, so he was the cement mixer, he handed me the bigger rocks, he massaged my sore muscles! I worked on the walkway before I taught my 2 fitness classes in the morning and after I was done in the afternoon. The last five feet were done by the light of my minivans headlights, I just wanted the small project to be over with, my back hurt, my hands were a mess, and I was exhausted.

Our Chilean Mesquite, now purists will yell at me for having this Mesquite and not an Arizona Mesquite, I never knew I had to be politically correct in my trees too. I received this tree at my 15 year old daughter Julia's baby shower. I had told my friends that the idea of planting a tree to celebrate her birth would be very special. She was my first daughter. So in 1992, this tree was planted here. It was 4 feet high, only a twig really.

I walked outside everyday to give it water; you have to water newly planted trees a lot in Tucson because we get so little rain. When Julia was 4 weeks old and I walked out to water the tree and it was gone. Ripped out of the ground. Being a symbolic tree to me, I was convinced in my postpartum confusion that this meant my daughter would be taken away form me, oh no, the tears were flowing as I went door to door asking neighbors if they saw anyone take it.

Three days later the man across the street brought a very dead looking tree to me and said he found it in the corner of his back yard. I bought some B-6 and poured it over the roots, and I replanted it. The leaves fell off, but it still had supple branches, so I refused to give up on it, my husband kept telling me it was dead, I had HOPE and FAITH it was not. In the spring it got new leaves and it began to grow quickly. Now, 15 years later that tree is growing into the street, I have to trim the branches so the UPS truck and school buses do not hit them.

My beloved fountain, it took a beating when we had an unexpected snow, it was running and the water froze in it and cracked it. I have the cement repair kit to fix it, but I just never got around to it. We bought it almost 10 years ago, I really love the sound of the water trickling, I miss it. It is the second time it has suffered an accident.

Oh yes, we really need to repaint our house, we needed to in 2006 when we said yes to adoption, painting costs money, that money went into Kara's adoption fund....I love my wind chimes.

No grass, no way, it costs $150 a month to grow grass, we were saving to adopt, grass or bringing Amanda home? Amanda wins!

OK, I admit it, my yard is overgrown and no longer looks this pretty, goodness I need help in my yard, I miss the pretty flowers. This was planted along the brand new walkway, you can see the large rocks I used to make the rock garden. Admittedly, I do not have the abounding energy I had then. When I had Meghan and caring for her took me away from the yard and then 2 1/2 years after she was born I got breast cancer. The chemotherapy seemed to sap my energy, my old life, from me, and though I have recovered much of my vim and vigor, I have never been the same. Cancer survivors call it "The new normal" My yard has never been the same either. My neighbor said he could tell something was wrong with me because my yard became overgrown and sad looking, I would wonder how he missed me walking around bald? LOL

Do ya think we need to paint our front door?

2008-08-28T16:53:00.001-07:00

This picture was taken in the winter, no flowers.

I have posted pictures of Amanda and you can plainly see that our door is in bad shape. Oh, how embarrassing. (blush) I actually sanded the finish off of the door a year ago in an effort to get ti ready for a new finish, and then got so busy I never got around to it.

So what color should I paint it? It was a walnut gel stain, but the Tucson heat baked it off a while ago.

We actually need to replace fascia and paint the entire house, I can never decide what color to use, I have gone to the paint store numerous times and nothing seems perfect. We have thousands of pink flowers, roses, lilies, but we also have blue flowers, there is so much green any green color would blend in.

How do you pick the colors you are going to paint your house? we have a brick Ranch with wood trim, only the trim gets painted. I like Terra cotta, but half the neighborhood has those colors...

Amanda passed her hearing test

2008-08-28T15:03:00.001-07:00

Amanda's audiology appointment went well. She passed both the tympanogram and the OAE. So that means when she is not acknowledging us when we talk to her, it is not because she can't hear us...I guess the same could be true for most children, huh? Just another thing we are concerned about RE autism.

Another Doctor Appointment for Amanda

2008-08-27T22:37:00.000-07:00

If you read both our blogs, you will see both my littlest girls had appointments today, we were only home a few minutes in between, enough to to feed and diaper the girls. I am exhausted and cranky, so were the girls, no one complained about going to bed tonight.

This was Amanda's official well child check-up. She has seen three doctors, but never had a regular check-up. I took her to the nurse practitioner because I thought she was knowledgeable and thorough. Well, Amanda has so many issues that the NP told me she did not feel comfortable caring for Amanda and told me to take her back to the pediatrician. Ugh, no offense to him, he is a good doctor for typical kids, but he does not know what tests to order for the girls and did not have a Down syndrome growth chart until I told him where to find it on-line. I do not want to be the person having to remember everything, I want the doctor I pay to be the guardian of their health to KNOW as well. Is that too much to ask?

At any rate, Amanda was weighed for the first time without clothes on and she only weighed 17 1/2 pounds, down 2 pounds from August 1, a different scale and she had alll of her clothes on. I felt like cold water was thrown over my head when she said how much Amanda weighed. How could she have lost weight with all we have fed her?

We were so pleased that she was accepting vegetables and meats in her diet now, even though they are pureed, but at least are not overly sweet and full of sugar. We have huge issues with her diet because she won't eat hot food, refrigerator cold food, and will not drink anything. I emailed a few moms today about this and they all gave me good advice, but we tried most of those things with her already. We add butter to all her foods, cook with coconut oil, and we add enriched (organic) rice cereal to all her fruits and her yogurt. We add Elecare to her yogurt as well. I have not tried heavy whipping creme (thanks Meredith) that is definitely worth trying, I could whip it up and add it to yogurt, and I am sure she would love that. She loves creamy foods.
We will not try Pediasure because of all the artifical sugar in each serving, sugar is an inflammatory agent and we do not eat a lot of it. I did find this Organic version of Pediasure. It is called PediaSmart She does not like the Elecare, maybe this would be a good alternative? PediaCare is really expensive, ouch. I would have to add it to puddings, she won't drink it. I also think it is time to get her a honey bear to drink fluids with, it is how we taught Meghan to drink from a straw, Amanda simply does not know how to drink or to chew.

Still I believe there has to be an underlying condition with her, she eats enough calories to be gaining weight, she has more energy than she did and moves all around the house, and she truly never stops moving through rocking and fidgeting, so she may be burning more calories than she takes in. Her color is better, she seems happier, so I am just confused. So we will add more fat to her diet (good fat). I also believe her teeth are hurting her (why she won't eat hot-cold and very sweet things right now).

Please pray for her, she is such a sweet little miss, she sure does not deserve all these issues. Tomorrow is her hearing screen, 9 Am, lord help us, it is too early for us.

A video and pictures from today!

2008-08-26T18:10:00.000-07:00

I went on a picture taking frenzy today, I think I got some good ones of Amanda, she is so delicate and drops her head so often, it is hard to get a good picture. Isn't she adorable?

This one was really yellow for some reason, so I did a color correction. Not bad, but I need to learn how to use my daughters camera better, mine is in pieces as DH tries to find out why it is not working (no offense to my hubby, but he is not very handy...) I may need a new camera.

The video is grainy, but it shows Amanda's personality more than a picture. I hope you enjoy it.

A picture for early AM

2008-08-25T00:41:00.001-07:00

You can see that her thighs are getting a little fleshier, she is still pretty skinny though. Yes, she still has mosquito bits, she scratches those buggers like mad, and makes them bleed. I have to put the bug spray on her and then a soothing salve, summer is almost over, they should be going away soon.

Right after dinner, she will do anything to avoid a picture. I caught her looking right at me, just before she put her head down. Meghan used to do something similar, argh!

Responding to your comments-

2008-08-24T15:35:00.000-07:00

I would love to be able to email each of you, but I did want you all to know how grateful I am for your support, prayers, and advice.

Responses to your comments"

Oh, :(. I know its not much coming from a complete stranger, but let us know if there is anything we can do for you? Take care and kiss your girls.

Thank you Debrah, it really does help to know we are not alone, and it truly is not the end of our world, it just makes it a little more interesting, right? I refuse to worry about Amanda's future yet, so much is being learned everyday.

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Oh Kris.... just another thing you and the family need. Poor Amanda... hoping she would be able to adjust and get comfortable with her new home.Praying for all of you and know I am here for you.

Dawn, Thank you, you are always here for our family, and usually the first friend to leave comments for me. ((((((((((((hugs)))))))))))))

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This is Ecki's blog: http://oppositekids.blogspot.com Her youngest daughter has Ds and Autism. We researched this issue a lot this year...signs and symptoms and treatment options. There are no easy answers.

Thank you Shelley, I checked her blog out, I will be going back again. Interesting that after I admitted Amanda was withdrawn, she because to be more affectionate. Loving little girl, we know it does not mean we were not right, but it is good to know she is beginning to trust us, maybe like us.

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Praying for you all!

Thank you Alice, prayers help so much, bring so much comfort.

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I'm praying for you and Amanda. Thankfully you are aware of the signs and have a lot of experience with autism. Amanda is blessed and will have the life she deserves with all of you as her family. She needed you. God Bless! Amy

Amy, I hope so, I spoke to a friend who said we should treat her autism and not her Down syndrome, though I admit, that seemed odd to me, it was the advice she was given. It is overwhelming to try to listen to advice right now. Prayers are appreciated.

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I am so sorry . I don't know what to say. I hope you can find a Dr. in your area that can help you find therapy for her. If there is anything I can do please let me know. carol n

Carol, we see the pediatrician Wednesday, I can address our concerns to him then. Though no one here in Tucson has given me any names of doctors yet...looks like we find information ourselves.

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My daughter Kayla (age 4) has DS/Autism. Shelley already mentioned my blog above, so if there's anything I can do to help, please let me know. There is a DS/Autism Yahoo group, although many of the kids on there are much older.

Thank you, I did visit your blog, loved it, there is so much there! I will be a frequent visitor. I truly do not enjoy groups when the children are significantly older, I tried one when Meghan was born and the advice was all about school, sexuality, puberty, and certainly did not help a mom with a baby. :o) Are you a member too?

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Kris, I know several people whom have children with DS and Autism, but none of them with girls. I'm pretty sure there is a Yahoo group for the dual dx, let me check for you. Also, want to give you big cyber hugs and prayers. I know that it is a big scare to face a dual dx.

I have always wanted girls because I was so afraid if I had a son with DS, they would also have Autism (much higher percent then girls). But after meeting my friends Son Russel so many time. That fear eased in me.

I only knew parents with sons as well Gayla, that was one reason why we thought it was orphanage behavior, maybe post-adoption depression? Thank you for the cyber hugs and everything else you do to support our family! :o)

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Is there any chance it's RAD? I don't know how often that occurs with DS, but it's somewhat common (that's maybe not the best word) for children who have been institutionalized, especially since birth.

Courtney I thought about that, there are definitely common characteristics with both, I am hoping and praying that it is not though, RAD is terrible, I know children can be helped, but it seems to tear families apart.

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Kris if you want to talk privately let me know. I am a fully trained Autism Consultant and would love to try to help.

Cammie, thank you, I got your email, I have just been busy, I will contact you soon.

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Praying here, too! We have a son with autism and I know those sad days of realization, too. The good news is that you know what to do and can help Amanda. Hang in there....

Julie, thank you for leaving a comment, I truly appreciate your support.

Down syndrome and autism

2008-08-21T20:07:00.001-07:00

OK, I have spent nearly two months telling myself Amanda has orphanage behaviors, she likes to be left alone because she was not socialized, she does repetitive things because she is learning, she won't smile at us when we smile at her because she is adjusting. She doesn't make eye contact because they don't do that in Estonia...I am fooling myself, something is terribly wrong with Amanda.

I am afraid Amanda has autism, my heart says she does, I have to admit it so we can get her help (we have already dealt with autism spectrum disorders, so we know the signs). I try so hard to get her to look at me, to smile when we play. Kara was not comfortable when I played with her at first either, but after 6 weeks she cuddled with me and loved to be held, would not let me put her down. Amanda actually pushes us away with feet and fists, she will also scratch and pinch to get us to put her down. Right now she is in the hall rocking, I tried to hold her and she pushed me away. She prefers to keep herself company. I enjoy feeding her just to get her to look at me, otherwise, she just shuts me out. She seems terrified of hugging, she is afraid of any physical contact to be truthful. She likes her legs rubbed, but not her arms, face, or back.

I finally go the nerve to look it up, I am afraid this describes her to a T. I just want to cry, but I am also afraid for her future. The doctors and therapists who have seen her have all asked about her smiling, interacting, playing with the other girls (she doesn't at all, Meghan tries to play with her) Meghan's speech therapist brought up autism with me today, she recognized the behaviors as well. She voiced what I have been afraid to.

http://www.altonweb.com/cs/downsyndrome/index.htm?page=autism.html
From the webpage:
So the key areas to watch for in a child with Down syndrome suspected of having a complicating behavior disorder such as autism is in the social and emotional areas. Some professionals will argue that social and emotional development can be expected to be affected by delays in cognitive development and it is not evidence of a separate disorder. This is where the subjective nature of autism diagnosis comes in. It's a matter of degree.

Some key behaviors that may point to the possibility of autism in a child with Down syndrome are:
Extreme Autistic Aloneness - The child does not relate to people normally and seems to prefer to be left alone. The child seems to consider other persons as objects, not people. He will not join in group play with other children. Unlike children with Down syndrome, who are very lovable and huggable, the autistic child does not want to be held. (True, yes, this is Amanda all over)

Anxiously obsessive desire for the preservation of sameness - Any differences in daily routines can cause a large upset. (This does not seem to be an issue, we do stick to a pretty regular schedule)
Lack of eye contact - Autistic persons typically do not make eye contact but will look away or "right through" other people. (When she eats she turns her face away, closes her eyes, and ignores us, I play with her and act goofy to get her to SEE me when she eats)

Shows repetitive, "Stereotypical" movement, like sitting for long periods of time with an object in his hand and just waving it back and forth looking at it. (Yes, 80% of the time she is awake)

I am constantly going after her to bring her back into the room with us. She crawls away and shuts herself up in a room.

I would love to hear from others who have children with a dual diagnosis.

Please don't forget our fundraisers

2008-08-19T18:58:00.001-07:00

We truly need your help to raise the funds needed to pay back our loans for our adoptions. If you would like to post the codes to your blogs, let me know.

Thank you to everyone who has already contributed, it means a lot to us, and rebecca, we need to hear from you please.

Poor Mandy Moo has some BAD teeth

2008-08-18T19:09:00.000-07:00

Well, Amanda did not have a good dental check up, I did not expect her to, but I am shocked at how bad her teeth really are. Keep in mind, she has not had x-rays yet, so these are only estimates of what she may need.

If you are a dental assistant, you can appreciate the fallowing:

Baby teeth are represented by letters. A-J are the upper teeth. That is 10 teeth total, 7 need work.

Work needed on her upper jaw:
Tooth A-two surface composite filling
B-Pulpotomy and stainless crown
D-Pulpotomy and resin crown-white
E-Pulpotomy and resin crown-white
F-Pulpotomy and resin crown-white
I -Pulpotomy and stainless crown
J-Two surface composite filling

Lower teeth are represented by letters K-T, 10 teeth total.; 4 of her teeth need work here. Amanda is just getting in M and R, so thankfully no decay there. N,O,P and Q are all worn down from her tooth grinding, no cavities found using the dental probe.

Work needed on her lover jaw:
Tooth K-Two surface composite filling
L-Pulpotomy and stainless crown
S-Pulpotomy and stainless crown
T-Two surface composite filling

Total due after insurance pays their $855 is $3,067. Ridiculous, and why do we pay so much for dental insurance? I forgot to mention, this total does not include anesthesia....hopefully Amanda can get her ALTCS before this appointment.

Please, please pray for Melonie and Les

2008-08-18T05:53:00.000-07:00

My very good friend has had a tragedy in her family. Please all of you who read my blog, say a prayer for Les and Melonie as they face the days, weeks, and months ahead.

Please Lord, give them the strength they need to live each day without their beloved son. My heart breaks with the thought of their pain. http://adoptingalina.blogspot.com/ I know they will appreciate your comments on their blog.

Bedtime

2008-08-11T22:25:00.000-07:00

I just put a very tired but giggly Amanda to bed. Today was the first day of school and a little wacky.

I am always so tickled when Amanda makes overtures of affection, she is truly coming alive before my eyes, what a privilege to witness her transformation. Kara is still jealous of Amanda and vice versa, you should see the look of delight disappear from Amanda's face when Kara sits with us. Kara beams up at me and I kiss her and Amanda glares from the corners of her eyes. Oy Vey these girls. Time should take care of the green eyed monster, I HOPE.

Mosquito bites

2008-08-11T15:28:00.000-07:00

Thank you all for your suggestions, Amanda has such white skin the bites look even worse, and then she scratches them too. We are waiting for an order of Skin so oft. Hopefully it helps.

Walking and getting around

2008-08-10T07:54:00.000-07:00

I forgot to mention Amanda's mobility. She still scoots and crab crawls to get everywhere and is incredibly fast. Lately she has been pulling up more to furniture, cruising the coffee table (knocking everything off).

Yesterday she held my fingers and walked 10 steps, all on her tip toes. It seemed to wear her out, she does not have a lot of stamina for walking, and her legs are so thin, I know she needs to develop more muscle. Her ankles and especially Achilles tendons are very rigid, not the loose joints I am used to with Meghan and Kara. We definitely need to get Amanda seen by an orthopedic doctor as well. She also desperately needs a PT.

I just loved her holding my fingers and walking, it was the first time she has for me, I think she has done it previously with her caregivers. Yesterday she climbed off the sofa on her own twice. She knows how, but does not attempt it very often. I am happy to see that progress.

Almost one month home report :o)

2008-08-09T06:15:00.000-07:00

The stink eye? LOL
Lack of flexibilty is not an issue here

Funny girl

Mosquitos are just eating her up, Kara too. Fresh blood?

Tomorrow Amanda will have been home one month! My camera is broken, I am having terrible picture taking withdrawals, I hope to post some a bit later, but will have to borrow DD Julia's camera.

First of all I cannot believe she has only been home a month, besides Kara not wanting to play with her yet, she has just blended into our family almost seamlessly. I am amazed at her resilience and I believe that it must be a gift little ones with Down syndrome possess; because Kara also adjusted more easily than I had anticipated, (she is readjusting now that Amanda is home). Perhaps it is also their age.

Some positive changes in Mandy Moo:

Socially:
Her spontaneous smiles and hugs, sometimes even kisses.
Seeking out the company of her sisters instead of wanting to be alone (half the time, she still seeks solitude).
Face to face playing with Meghan, and Mommy and Daddy, she has the cutest little coo and laugh, so sweet, endearing.

Eating:
She is eating food without turning away and spitting it out, and eating more at one sitting. She does turn her face away, but I think it is to prevent us from shoveling food in; she seems to be savoring each bite and truly feeling the texture of the food, tasting it, and enjoying it. I know the orphanages do this to save time, but feeding her while she is flat on her back and pouring food down her throat was not the best way to teach her to love food. She does not move the food to the back of her throat correctly, she sticks out her tongue and sucks it down, and she does not chew, seems strangely familiar and leads me to wonder if there is some weird feeding manual all orphanages use, “How to save time when feeding 200 children”. Kara had so many of the same issues, though she never turned her face away from much. LOL

She is gaining weight, especially in her legs and belly; we are hoping her ribs will not show as much after 6 months. I am trying to picture her face when it is rounder, when she has more hair, a pageboy would be darling on her, and putting pants on her that do not fall off. The only thing that stays on is leggings, size 12 months!

She is accepting foods that are not as sweet and is no longer needing extra sugar put into her food, something we are very happy about, her teeth do not need the extra sugar.

Playing:
She is beginning to play just a bit more with toys; I saw her playing with the dollhouse, looking at the windows and doors. She was there for 30 minutes exploring each little nook and cranny. She does not play appropriately with toys yet, all are picked up and wiggled, and she throws even more. Right now playing with paper makes her the happiest.

Mobility:
She is pulling to a stand more often and cruises furniture a little more. (Why do these little girls love to throw everything on the floor?)
She tries to climb up on the sofa, but lack strength and height. I am going to remove the cushions to help her.

Teeth:
Though she hates it so much, Amanda is letting us brush her teeth and they do look better, she smells better too. Her gums have almost stopped bleeding completely. Neither one of us loves tooth-brushing time with her though; her abject cries of misery are heartbreaking.

Things we need to work on:

We need to help Amanda to feel more comfortable with playing and being close. I know this will come with time, so I am not overly concerned about it. She plays with us more than she used to, but after some silliness and giggles, she needs hugs of reassurance, at first she would tremble in my arms if I got silly and laughed while playing with her. Now she smiles at me looking into my eyes and tries to kiss me but the saddest thing of all is, she has no idea how to give kisses.
So she smushes her wet little lips on my face and wipes her face on mine (a very wet, but very sweet little kiss). Did I mention she was adorable?

In my round about way, I am saying she does not really know how to give or receive affection the American way, but why should she. She is learning, but it scares her, and it worries me that she is scared about hugs or nose kisses. We are a very affectionate family, it was hard for me to hug my boys less as they grew up, two still like hugs, and two do the MAN hug. The little people still love hugging though. Amanda looked at us as if we were nuts when we hugged her the first time, the only hugs we got those first few days were when she was clinging to us for life, but poor little girl was terrified. Therefore, her progress here is that she loves hugs if they are quick, and enjoys being held, she no longer turns her back to us when she sits in our laps, but wants to look at and play with us, and she asks to be picked up more often (sits at our feet, that is how she asks, otherwise she crawls away to a room by herself).

Amanda enjoys going places, she is so happy in her car seat, she gets an almost regal set to her head as she sits in that tall seat, one could almost picture her doing the parade wave! LOL We also have to watch her when the front door opens because she will crawl out and be in the middle of the yard before we know it. She is beginning to get curious about where she lives, admittedly, we do not have the girls outside all that much during summer, it is just too hot for them, and none of them can handle the heat well. The only time Meghan and Kara want to venture out to the back yard is after a nice rain, Amanda though, wants to go out the front door, not the back. When it is cooler, I need to put some jeans (she scoot on her bottom, you should see her pants at the end of the day) and shoes on Amanda and let her follow me out when I water, but since she cannot walk, I worry about ant bites. I cannot wait for the bugs to go back to sleep for winter, especially mosquitoes, they adore Amanda. She is all spotty from their bites and she truly loves scratching them.

I think she is doing well, she does refuse to nap, and throws off Kara’s naptime, Meghan is indignant when Amanda “sings” very loudly during naptime and tells her to be quiet repeatedly. Kara, hearing Amanda’s singing, refuses to sleep herself and jumps up and down in bed, and Mommy does not get a couple of hours to clean up messes and have a little time alone with Meghan and Julia. The caregivers warned us that Amanda did not like to nap; I suppose the napping when we first came home was from jet lag? LOL I would LOVE it if she and Kara would nap at the same time…Amanda does sleep 10 hours a night though, so at least that is a good thing.

4th place? No FIRST place in our hearts forever and always

2008-08-07T22:29:00.000-07:00

It has been a long day, we were busy all day, but nothing noteworthy happened. I made appointments at the social security office to apply for SSI for the girls, I made an appointment for Kara to see an orthopedist as she pronates excessively, walking on her inner ankles, and needs orthotics. I called to get Kara’s immunization records sent to me to register her for school as somehow they were missing when we tried to do that Monday. I talked to the pediatrician’s office about Kara’s blood test results (all normal) and I spoke to a friend about a gorgeous little person available for adoption…OMG is she gorgeous and I am dreaming…

Actually, I have a pretty boring family, but the blogs were written for the girls to have a story of how they got here to America, they were not written to be entertaining, though at times I fall victim to that. Honestly though, nothing makes me happier than reading successful adoption stories, I also read those that do not end as well with tears and prayers, but I am a sucker for a happy ending.

I am joyful that so many families in the last year have had their storybook endings, some of them are minor celebrities (not us) and some use their adoptions as a stepping stone to advocate for children still in the orphanages(I would say most of us do this). If you were to listen to those families’ stories, you would hear 100 different reasons why they were adopting, and 100 interesting stories to follow. The majority of us adopting children with Down syndrome or other special needs do not always get support for our dreams, even as far as family ignoring our journeys. Lucky folks have the full support of theirs.

I would like to encourage anyone who reads my blog to read and comment on other adoption blogs as well; I see some blogs getting thousands of hits and others a dozen. Each family is special, all the children they are adopting are God's angels, and all deserve an audience as they enter into their new families. I know it is a lonely feeling for me when I see the mobs elsewhere, most days, I don’t care, others, it really bothers me.

Oftentimes I feel like a 4Th place winner in the Olympics; getting there was incredibly difficult, but no one remembers my name! LOL I would love for folks to give Kara and Amanda their standing ovation, even if they are 4th place winners in the adoption world. They will always be 1st place winners to us and our close friends, and that is what truly counts.

I will soon begin to print out the pages of their blogs for their life books, when they have been home a year, I will stop writing in both, I will miss it, but it will be time.

Blood tests done

2008-08-05T15:41:00.000-07:00

Taking three little girls for blood work is NOT fun, I hate hearing the girls cry and I am not fond of needles. All three were very upset, they were worried about Amanda's because she is so tiny, but hopefully got all the blood they needed, we got juices for the girls, Amanda will get extra in her food. Whew, so glad it's done.

Amanda got titers for immunizations, I guess they did not trust that she truly got them, though I do. She also got blood drawn for thyroid, CBC, HIV and other STD's. Covering all the bases I guess, poor baby could not have any other work done.

Kara got CBC, thyroid, and her genetic testing as her syndrome has never been confirmed via blood work (karyotyping). She was also tested for Celiac.

Meghan got blood drawn for CBC, Celiac, and thyroid hormone levels.

Mandy Moo's teeth

2008-08-05T00:15:00.000-07:00

We have been dutifully brushing her teeth with a power tooth brush and following the brushing with baking soda, her gums are not bleeding as much and her teeth are white! No more nasty yellow pirates teeth, and no more stinky Amanda! It takes the two of us to brush her teeth, she may be skinny, but she is not weak.

She cries the entire time and it breaks my heart. I can see shepossibly needs two teeth pulled, they seem to have rotted to the gum line, but I can't get a good look, they could be deformed instead.

I have to call the dentist tomorrow for all of the girls, I wanted to be certain Amanda's heart defect was stable before I let a dentist poke around in her mouth.

She is beginning to allow us to hug her more, she is so confused about how to give affection, with Tom she gets excited and pinches him, but she does not pinch me, she pulls my hair. She truly dislikes anyone too close to her face, though she kissed me several times today. Afterwards though she places her forehead against mine and breaths hard. It is so hard for her, but she craves the attention. In time I think she will ask give and receive affection without the fear she seems to have now.

She is covered in mosquito bites despite our dressing her in long sleeves and pants, we are finding the mosquito's and killing them, but they just come back. I need to get Skin so Soft for all the girls, despite the parabens in it, we have to protect them from those nasty bugs.

Certificate of Citizenship arrived today

2008-08-04T12:43:00.000-07:00

Amanda is an official American citizen! Yea Mandy Moo, our sweet new daughter. It is a good day for her!

Meghan amd Mandy moo

2008-08-02T14:31:00.000-07:00

Adoption Story-Discovery Health

2008-08-02T07:27:00.001-07:00

I am sure many adoptive parents watch Discovery channels Adoption Story. I used to be addicted to it, just as if I watched birth stories repeatedly while pregnant.

I have two favorite parts, them meeting their child for the first time, and their welcome home. Nothing describes that feeling you get when you see your child the first time, I held back tears both times, but I wanted to weep with joy! Amanda was so thin, when we saw her the first time we did not recognize her as the baby whose picture we had been looking at for over a year. It did not matter; as soon as she wrapped her trembling arms around my neck, I was enthralled with her.

Getting to know this special and very sweet little girl has been such an unbelievable privilege for us, we are still at the “pinch me, I must be dreaming” stage of having her. She has been with us 6 weeks, her sleeping is now back to where it was in Estonia, she is eating more, gaining weight, and feeling more comfortable with our family.

She adores looking out the window, when she rides in her car seat (Thanks Georgiana) she takes in the landscape with a smile on her face, where I though she would be frightened, she is animated and engrossed. She is such an amusing little girl, making many faces to go with her countless moods; she makes us laugh when she goes through 5-6 of them in quick succession.

Amanda prefers being by herself, but she rarely gets to be, Meghan adores her, and yesterday they played a lot together, but this left Kara out, and Kara, though somewhat of a bully, is a sensitive little girl, and it wounded her feelings. She sat with mommy and daddy a lot, I think she is going to learn no one likes being hurt by her and it will bring a halt to that behavior. She is still such a baby and does not understand how her actions affect others. We adore both of our little ones, but they are vastly different from one another in temperament.

I am exceptionally sad for Amanda and Kara; their births were not celebrated with their family’s cooing and awing over them. Their adoptions were of similar response; indeed with Kara’s adoption Tom and Meghan were unceremoniously let out of the car as we, the facilitator, translator and I, sped away. Meghan had a stinky diaper…I left to go to the orphanage directors office to hand over our donation, seemed the timing could have been better, it felt like we were paying for Kara, but then the whole donation scenario (being told what we HAD to give, instead of us deciding) left a bad taste in my mouth. I had read stories of dinners and drinking vodka (not that we drink) to celebrate the adoption, perhaps it was because we do not drink that we were not invited anywhere. Instead of a dinner, Tom, Meghan, and I walked through the snowy streets to visit our newest family member Kara, despite the lack of joy from our team, it was a special day for us. We know it had a lot to do with Kara having Down syndrome, no one there could understand why we wanted her and not a healthy child.

We adopted Amanda as she sat in Tom’s lap, it was an incredibly serene experience and still my palms were moist, my heart fluttering. The officials were very kind to us and they did not seem sad that we wanted to adopt a girl with Down syndrome, they seemed grateful, relieved for her. Our facilitator shook our hands and tickled Amanda under her chin, you could tell he was fond of her, but as soon as the adoption was over Amanda and I returned to our apartment; Tom left to go to the embassy to fill out his paperwork. Do not get me wrong, we were let down, but not that much, we were new parents to a beautiful little girl, and that was a glorious feeling, one I suppose we wish others had shared with us. When something as stupendous as adding a new child to a family occurs; there should be trumpets blaring and lively celebrations to match the jubilation of our souls, it should not matter that the girls were not born to us; they were still our children.

I suppose I am disappointed that we do not get the banners flying, family packed welcome at the airport, though seeing my husband, son Terry, and our girls there lifted my spirits and I truly felt like I was finally home. I believe that they only do those sorts of homecomings for television, but I could be wrong, and if I am, I do not want to know.

It makes it hard to watch adoption story though, I want it to be more real, the quiet entrance many of us have into our new lives with our newest child. When I gave birth to five of six of our children, it was just my husband and I at their birth and at my insistence, so I suppose people are honoring that request now…LOL.

Forgot to add

2008-08-01T16:27:00.000-07:00

My little bitty girl gained 1 1/2 pounds, she is now over 19 pounds! Go Mandy Moo! (yes, she has a nickname now, Kara, bless her heart is Kartoshka Baby, the girlie is mad for potatoes)