I am growing up so fast!

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Amanda

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For Amanda

Our three T21 princesses

Friday, August 29, 2008

For Gayla-some more pictures of the garden.

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

Thursday, August 28, 2008

Do ya think we need to paint our front door?

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

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.

Wednesday, August 27, 2008

Another Doctor Appointment for Amanda

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.

Tuesday, August 26, 2008

A video and pictures from today!

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.

video

Monday, August 25, 2008

A picture for early AM

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!


Sunday, August 24, 2008

Responding to your comments-

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.

Thursday, August 21, 2008

Down syndrome and autism

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.

Tuesday, August 19, 2008

Please don't forget our fundraisers

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.

Monday, August 18, 2008

Poor Mandy Moo has some BAD teeth


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



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.

Monday, August 11, 2008

Bedtime

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

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.

Sunday, August 10, 2008

Walking and getting around

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.

Saturday, August 9, 2008

Almost one month home report :o)

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.

Thursday, August 7, 2008

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


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.

Tuesday, August 5, 2008

Blood tests done

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


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.

Monday, August 4, 2008

Certificate of Citizenship arrived today

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

Saturday, August 2, 2008

Meghan amd Mandy moo


Adoption Story-Discovery Health

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.

Friday, August 1, 2008

Forgot to add

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)

Good news for Amanda

The doctor and med student examined Amanda, we saw Dr Brent Barber, if you live in Tucson, he specializes in congenital heart defects.

Both heard a murmur, but the echocardiogram did not show ASD, VSD, PDA, or any transpositions, the valves were all normal, the only abnormality was what is called Persistent Left Superior Vena Cava. It is more common in children with down syndrome than the general population, but not by a huge margin.

The doctor said hers drains directly into her right atrium and does not affect heart function, the echo did not show any heart anomaly that would explain her murmur and he indicated it could be anemia causing it. Any cardio moms want to interject an opinion here? We were directed to come back in a year for follow-up.

A Medscape article says:
The embryologic development of systemic and pulmonary veins is complex and subject to considerable variation. During normal development, the anterior cardinal veins, which drain the head, neck, and arm, unite with the posterior cardinal vein in the very early embryonic stage and enter the heart as the right and left horns of the sinus venosus. With the exception that the cardinal veins on the right and the left side drain into the right atrium, the cardinal venous system is bilaterally symmetrical at this stage. Most of the left-sided cardinal system disappears, leaving only the coronary sinus and a remnant known as the ligament of Marshall. Simple failure of obliteration of the left anterior cardinal vein results in the persistence of the LSVC. This usually drains into the right atrium via the coronary sinus. On rare occasions, when developmental arrest occurs at an earlier stage, the coronary sinus is absent and the persistent LSVC drains directly into the atrium.[2]

Individuals with LSVC usually possess a normal right superior vena cava, and thus the condition is not routinely detected. The physiology is normal, and there is no hemodynamic compromise. In rare instances, the LSVC drains directly into the left atrium and may cause a small right-to-left shunt. This lesion usually has little hemodynamic effect, although a variable degree of systemic cyanosis may be seen.[2]

The importance of a persistent LSVC lies in a greater prevalence of other associated congenital cardiovascular defects and significant incidence of rhythm disturbances.[3] Wood[4] found persistent LSVC in 20% of cases of tetralogy of Fallot and 8% of patients with Eisenmenger's syndrome. Hancock[5] reported a high prevalence of leftward P axis with a normal PR interval, but its significance is not clear.[6]

Persistent LSVC can be accurately diagnosed noninvasively by echocardiography in conjunction with Doppler and/or contrast ultrasonography. One of the clues to the diagnosis is an unusually large coronary sinus on two-dimensional views. It appears as a dilated, echo-free space posteriorly in the atrioventricular groove between the left atrium and ventricle. Saline microbubble contrast can be used to enhance the accuracy.

My three little girls

My three little girls
Finally got all three to smile at once