Tuesday, October 13, 2009
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!
Thursday, September 17, 2009
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.
Thursday, July 16, 2009
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!
Friday, July 3, 2009
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.
Thursday, June 25, 2009
Posts from last year:
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
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.
Tuesday, June 23, 2009
You can read about her gotcha day here, our post from last year.
Monday, June 22, 2009
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?
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...
Sunday, June 21, 2009
Monday, April 13, 2009
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.
Thursday, March 26, 2009
Wednesday, March 25, 2009
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.
Monday, March 23, 2009
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:
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.
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.
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
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.
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.
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?
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
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.
Sunday, March 22, 2009
Saturday, March 21, 2009
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.
Monday, March 16, 2009
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.
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!