Yes we are still here

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

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

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

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!

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

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...

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

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

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

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.