Manda Moo is not digging Halloween

Video of the girls

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

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

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

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

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

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

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

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

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?

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

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

New picture

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

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

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

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

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

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

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

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

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?

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.