Bring on 2011

It has been a rough year here, I am sure other families can relate. So yes, I am more than happy to see this challenging year behind us.

I remind myself that each hour we have in this world is a gift, but this year, oh, what a tremendous struggle, mostly financially, that is what happens when wages are frozen but prices of everything else go up and up, and I know we were not alone in this. In many ways it has been better for us than for others.

I am grateful our children have been relatively healthy this year, other than some colds and tummy flu's, we have had a good year.

I am grateful for the gains our three youngest have made in their developmental skills.

I am grateful my husband had a job, budget cuts have threatened his job for two years. 2011 will be another struggle, more cuts in store for our school budgets, prayers are appreciated.

I am very grateful for my continued remission from cancer.

I am grateful for the new daughter I gained this year via our sons Terry's marriage, we Love you Anna.

I am grateful for good friends, especially those who helped us make Christmas special for our little girls.

I am grateful for older children who are giving and caring and understanding.

I am grateful for the food we had to eat, the home we had to live in, and a running vehicle in good condition. More than many people have throughout the world.

I am happy for have all I have, for the blessings of my family and friends and wish everyone a wonderful 2011.

Who is THAT girl?

Or should I say, THOSE girls. Meghan, Kara and Amanda are growing! Yesterday was OT Wednesday, that is when M comes by to work with all three girls on fine motor skills (gross motor mixed in too). M looked at Kara and said; "Kara are you taller?" and by golly, she sure is, I noticed her tops and skirts were getting too short, but all of a sudden she just looks so much bigger. It is time to wash and pack up size 4 clothing and put it away, size 5's are coming out! Kara grows so much faster than Meghan or Amanda. She wore size 3 for about 8 months. Now Meghan wore those clothes for a year and a half. Meghan had too many clothes, and she rarely wore anything more than twice, so Kara got some nice things, and Kara destroyed 1/3 of them by ripping out hems and stretching necklines. I have a pile by the sewing machine, ready to be hemmed again.



Kara is not the only little girl who is not so little, Meghan just turned 10 and I noticed her 7's are too short, 8's still a bit big though, I dislike those in between stages. Meghan is taller, but unlike Kara, not chubby, so she can wear clothes a long time. Kara is a big girl, large boned, fleshy.

Amanda is taller, but she gains weight so slowly, that she looks too skinny, her pants are falling off, and she is eating more again.

Alopecia areata and Meghan

Yesterday, I told Meghan she looked pretty, she said; "I am not pretty" and I said yes you are, and she said, "No, not pretty Mom".

It is her hair loss that is making her sad. I noticed her looking at her head in the mirror for a few weeks, since Buddy Walk. One of the moms asked me what was wrong with her head, and Meghan's hand flew up to the bald spot. Before that she did not seem that concerned about her hair loss, but now, I guess she feels it makes her ugly?

We have never said anything about it making her less beautiful than she is, I am very sad that my girl has become self-conscious about it now.


Meghan lost her bangs this time, this side is always pretty bad, but this was not the worst hair loss she has had because of alopecia, and it is regrowing here. See the fine hair? It is pretty long now, but now she lost all the hair of the same area on the other side, looks similar to receding hairlines of men with male pattern baldness. She also has two 3 inch circular patches of hair missing from her left and right parietal regions.

Meghan 2006

Alopecia areata is a hair-loss condition which usually affects the scalp, for Meghan, it also effects her body, she has no hair on her arms and legs. Her pediatrician and her dermatologist fear she may eventually lose all the hair on her head. She has kept her eyelashes and eyebrows this time, they have fallen out completely before.

Alopecia areata typically causes one or more patches of hair loss, the nape of her neck has been hairless for a couple of years, we do not think that hair will grow back again, but we don't know that for certain. Her condition has gotten progressively worse, she had quarter -sized patches at first, now she can lose all the hair on one side of her head. People stare at her sometimes, lots ask what happened. or what is wrong with her hair. She is noticing their stares and comments now. It breaks mommies heart to see her getting self-conscious about it.

Alopecia areata tends to affect younger individuals, both male and female, Meghan was a baby when she lost her eyebrows the first time. We honestly believed her sister had shaved them off, she was a bit jealous of Meghan and well, there was that time she cut off all the cats whiskers...Julia points out that ha ha, it was not her, how many times can we say we are sorry? :P

Alopecia areata is an autoimmune disorder, in which the immune system attacks hair follicles, that is what is believed, but researchers are not 100% certain. At one point one of her doctors told us that her impaired immune system may make her more prone to leukemia, however I have also read that people with autoimmune issues have less of a chance to get cancer. Since Meghan's maternal great grandfather passed away from leukemia at age 82, we feel there is some reason for concern, but do not dwell on it, why borrow trouble? He was also exposed to nuclear fallout like me, and it is likely that caused his cancer, and my grandmothers too, well, probably all of us. Look up RECA if you want to know more about downwinders.

For most patients, the condition resolves without treatment within a year, but hair loss is sometimes permanent. Meghan has had alopecia since infancy, so obviously it is not going away, and it is getting worse, will she lose all her hair? No one knows.

A number of treatments are known to aid in hair regrowth. Multiple treatments may be necessary, and none consistently works for all patients. We did squaric acid treatments for a few years, it helped. The idea in a simplified way; the squaric acid would be an irritant that would cause her white blood cells to go to that area and try to heal it, leaving her hair follicles alone. It seemed to work, her hair grew back, but after a time, her skin adjusted to the acid and we would increase concentration slightly, we eventually got up to 2% solution, at that point Meghan failed the protocol and we had to choose another medication to fight it. The next step was steroids, we refused them, we do not believe steroids are safe for children and alopecia is not life-threatening, she has not had any treatment for about 18 months.

Many treatments are promoted which have not proven to be of benefit. Since it is an autoimmune issue, there are very few safe treatments, the medical world wants to shut down the over-reaction of the immune system by giving medication that significantly alters a persons immune system, making them susceptible to cancer and infections, we say a big no thank you to these.

We cut out gluten, her skin cleared up, her hair grew back on one side, but fell out on the other. She has thick misshapen toenails from her disorder. They are hard to cut. So far we have not found a good way to combat this using nutrition.
If it is genetic, there is nothing we can do with the current medical knowledge of auto-immune disorders. About 10% of children born with Down syndrome have alopecia, and the alopecia gene is on chromosome 21, hmmm.
http://www.ds-health.com/abst/a0008.htm to read about this.

Hair is not necessary to live, but if you ever lost yours, you would know how badly it feels not to have it. I lost mine because of chemotherapy, but it grew back in pretty quickly, sure it was a weird shade of green, but it grew back (it did return to normal). I have two sons with different types of balding, one with male pattern, and the other has thinning all over his scalp. My husband is losing his hair exactly the way his father did. My maternal grandfather was completely bald and I think Meghan simply had bad genetics where hair loss is concerned.

Kris and Julia, June 2003

Mommy and Meghan November 2003. My hair was about 1 inch long, growing back after chemotherapy. I understand how it feels to be bald, how people treat you differently. I wore a wig so I did not have to answer questions, or have people look at me with pity in their eyes. Meghan cannot wear a wig, she is not bald enough, wigs hurt and itch, I am going to try my hand making her some hats with a circular loom. One of every color! With crocheted flowers!

I am grateful that it is all that is wrong with her, I know it could be much worse, for Meghan though, it is difficult, she will likely never have a full head of hair again.

The magical 3 year mark for Kara

When we decided to adopt there was always one thing I thought about, sometimes fretted about. "Could I love a child not born to me?" and followed quickly after that thought was "Will they ever love me?" I also thought about bonding with my other children and our newest addition, our older children were adults, they could have their own kids the ages of the girls we were adopting. Could they ever bond with the little stranger we brought home?


I had read somewhere in my hours of adoption reading that it took the little one you adopt as long as they had lived in the orphanage to forget their lives there and to fully integrate into your home. That 3 years is almost here for Kara. I have been watching her pretty closely the last few weeks, something changed in her, she seemed to have a serenity I did not notice before, a certainty that she was part of us, a Levario for good. Do I think she contemplates that, no, but I think in her little girl way she knows.


She is a dreamer. Though I do not know yet what she dreams about? Likely yummy food right now. She still loves to eat though she has become a picky eater, I never thought that would ever happen with her.


Kara seems like such a serious little girl, she can stare at you with the saddest brown eyes and make you wonder if she has sorrow in her little heart you cannot reach. Then like someone flipped a switch she will tilt her head to the side, get a quiver in her lip and jump at you in a fierce hug, giggling in happiness. She has the most adorable and contagious giggle. This is a favorite game of hers, trying to look non-chalant but unable to control her little face, and POUNCE. We play this game after I change her diaper. After the 2nd or 3rd time Meghan and Amanda are right there jumping with Kara. Kara is not a fan of sharing her mama. Amanda is not a fan of it either, they are possessive of my attention and time. I guess I would be too if I never had a mama before?

I think Kara does think of me as her Mama completely now, there were times when I felt like she just thought I was a person who got her food, but she is learning what moms and dads do. She makes herself cry so we will come to her side, and she sobs into our necks, and then there goes that switch, she smiles, wipes away the tears and goes about her business. I know that there were two women in her orphanage that may have answered her cries, but I also sat and heard infants hiccuping sobs in the back while I played with Kara in the front room. So I am sure there were plenty of times that our daughter cried out in pain or loneliness and no one was there to kiss her tears away.

I am glad I stayed in Ukraine the entire 6 weeks to bond with Kara, it was sometimes unbearably lonely especially in the middle of the night with no TV to watch or Internet to surf. I think it was important to bond as much as I could with little Kara and lay a foundation for our future as mother and daughter.

It has not been a walk in the park. Kara was a daredevil with destructive tendencies and impulsivity usually aimed at Meghan. Hair pulling, scratching, pinching, biting, things a toddler may do, and Kara was much like a 8 or 9 month old when we brought her home.


There were so many days I could not wait for nap time so Meghan and I could spend quiet time together, I think it was hardest for her to share me with Kara. It was also hard for Julia, as I could not jump in a car and take her things to school or take her places because Kara napped 2-3 hours every afternoon. There were times when I felt like I was babysitting her, especially those first 6 months home. Bringing Amanda home 9 months after Kara also made things hard for Kara and set us back quite a bit in bonding, she was green-eyed with jealousy and so mad at me.


Little by little I adjusted to Kara being my daughter, and Kara learned to be a member of a family. She and Meghan play so well together now, with minimal hair pulling. In the morning Meghan will search out clothes for Kara, help her dress, put on her shoes and take her hand and say; "Come on Kara" and Kara follows her outside. They tour the back yard and watch cars drive by and then come back in ready for breakfast.


When I saw Reece's Rainbow the first time, all I could think about was how sad it was that so many children were left in a hospital, alone and cold, while their parents carried on with their lives (I do not think it was easy for them). I had a dream of a little girl being a sister to Meghan and them bonding for life. I think that magic has happened for those two. Since Amanda is still so much like a baby, they kind of ignore her, she does get into the mix many times, and she is one determined little girl herself. I am sure as soon as she is walking all the time they will begin to include her in more things.

Kara went from a little baby to a girl in the last three years, at age 6 she is very much like a two year old, things will likely move slower for Kara, but she is progressing and that is what is important. She is consistently using three sign "sentences" with prompting, and is vocalizing more and more.

Maybe in three years she will talk my ear off? I sure hope so.

"She has run of the mill Down syndrome"

Ah, I was reading a blog about how they found out their precious daughter had Down syndrome, and I remember how the news was delivered to me.

It's out of the ordinary; but Meghan was almost 2 months old before we finally got her karyotype test. She was not one of those babies who looked typical and parents find out when development lags that they have Down syndrome. She looked like a baby with Down syndrome. She was beautiful, gorgeous eyes with Brushfield spots that made them sparkle like diamonds, and the prettiest soft skin.

I can't remember why we finally did it, odd, insurance is likely, so much was happening at the time, whatever the reason was, she did not get the blood test for a while.

I have to admit that there were times I was hoping they would tell me "Well, we made a mistake, it is not Ds at all", I suppose most of us do wish that, life is so hard, growing up can be really hard for kids, even if their only difference is a stutter or needing glasses, so of course we want our kids to have less reasons to be picked on by others...it concerned us because we always wanted Meghan fully included in school from her birth (but that is another story for another day).

On the day of the blood test I was uneasy, Julia was with us, she had just told off some interns (she's not a lab rat you know), she has always been a girl who knew her mind in that respect, and we had finally asked about blood tests, everyone was shocked, what do you mean? The hospital does those at birth...except Meghan was born in a birthing center with midwives, not in a hospital, so that was yet another routine test or discussion that fell through the cracks.

We navigated a confusing basement area to find the lab to draw Meghan's blood; it had to be a special lab, one for genetic testing only. My heart was thumping, when Eric, our third born developed life threatening jaundice from ABO incompatibility, and he had to be hospitalized 3 days after his birth. I will never forget his painful cries as they attempted to get an IV into his tiny body, coming out to tell me they were thinking of doing a surgery to reopen his umbilical artery and putting it in there, it ended up in his leg... They made me stay outside of the room and I was only able to comfort him after they were done, I was livid with them for forcing me out; 3 days postpartum and majorly hormonal, I stood against the wall in tears, sobbing. As a result of that experience, we knew getting blood from Meghan was going to be tough. It is traumatic to see them repeatedly try to get into the vein of an infant, I always feel like I will pass out. That is probably why they made me wait outside for Eric…who wants mommy fainting?

After a lot of struggle, they got enough blood and wrapped Meghan's arm up in elastic band and we went back to the examination room to put her clothes back on. Julia turned white and said "Why is her arm purple mom?" Sure enough the elastic had cut off the flow of blood to her lower arm; we quickly removed the too tight elastic from her little arm and watched it regain a normal appearance. It scared Julia, she still remembers that day, but she finally understood why mommy was always so sad after Meghan saw the doctor. They seemed more careless with Meghan than our other 5 children, or maybe we were more sensitive?

A month passed, and I remember being asked what the genetic tests had found and saying; "Hmm, I don't know, no one ever mentioned if they got the results". So I called the pediatricians office and the nurse said they had been there for weeks, but she was not allowed to report the results to me, even though she knew what they said, that a pediatrician would call me with them.

A few hours later a harried sounding doctor called and said, oh yes, here are the results "You daughter has run of the mill Down syndrome". I thanked him and hung up. Well, no surprises there, but an ever so slight disappointment in the back of my mind, “So it is true”.

I told another mom what the doctor had said, not really thinking about it, and she was aghast, how flippant of that doctor to say it in such a way, I guess I was used to them being insensitive, I had not given it much thought until I saw her reaction.

So Meghan has run of the mill Down syndrome, so do Kara and Amanda. I am certain their moms did not think it was so run of the mill when they heard the news either. 90% of babies born with Down syndrome have Trisomy 21; the other types, mosaic and translocation are much rarer.

Hmmm, run of the mill Down syndrome? What does a child look like who has run of the mill Down syndrome?

When Meghan was younger, I spent a lot of time checking off her Ds characteristics, she has the palmar crease on one hand, not the other, her nose looked like mine but she has a flat facial profile, but so did I as a child...her almond shaped eyes are just like mine too, but she had epicanthal folds, did I, who knows? Her skull is smaller than average, so is mine. She had thick thumbs and shorter fingers, but skinny feet. Her arms and legs are slightly shorter than average. She has stick em out ears, no little folds along the tops. She also had moderate hypotonia and loose joints. Stabisimus which eventually required corrective surgery, and is becoming slightly near-sighted. She also had a heart defect; also minor compared to other children’s, major to us. When you think about it, all those things are pretty minor, except that to us, who never has a child with any major health issues, they were not.

I will never forget the way I felt when a mom who was working with our family to help us adjust to our news said "Oh, your daughter is high functioning" and there was a bit and sorrow and jealousy there. High functioning compared to what? It was the first time I heard those words in relationship to a child. Her daughter was born with lots of medical issues including cataracts which made her legally blind, I suppose to her, any child without vision issues would be "higher functioning" than her daughter. Her daughter also had trisomy 21.

I had 15 close friends who had babies around Meghan's age, a blessing at a time when so much was new. One of those sweet girls had epilepsy, and trisomy 21. Another little guy had Tetrology of Fallot and AV Canal, he was also very ill post surgery and had many other health issues following it. He also has trisomy 21.

Just as a side note, there were only two of us in that group who were older moms, the rest were younger than 35, one was 18.

When we adopted Kara it was plain that she had the curved pinkie finger, no palmar creases, but the little fold on her lower set ears. It was not until I took her from the orphanage on Gotcha day that I saw that she had webbed toes, her 2nd to her 3rd, and her 3rd and her 4th, she also has a huge space between her big toe and the rest, and short, flat, wide feet. Kara also has extremely low tone and very loose joints. She has trunk weakness and shoulder girdle weakness and tends to gain weight easily. Kara has nystagmus and strabismus, but has normal functional vision. It was reported to us in Ukraine that she had "wild eyes" and we quickly learned they were referring to the rapid movement of her eyes when she was tired. When we picked up Kara her facilitator kept telling me she did not look like a “Down syndrome baby”. For Kara the “look” was transient when she was three, but more obvious now.

Amanda Moo? We have a couple of pictures of her from adoption websites, she always looked like an infant with Down syndrome too, in one she looks grumpy LOL, the other disinterested. I wondered about autism and her pupil size when I saw her picture the first time. She has some other issues not associated with Down syndrome; positional plagiocephaly, not certain if it was from the womb, or from being left in a crib too long, a partial expression of Aniridia, one in 80,000 people have this condition, varying from partial to full (no iris, just the black of the pupil) interesting that most people with aniridia are nearsighted, but Amanda is far sighted. She also has minor strabismus. Amanda has a persistent left superior vena cava, only 2% to 4.5% of the population have dual superior venae cavae. Amanda is just unique! Oh, and she also has run of the mill Down syndrome, and autism....

31 for 21-day 23-Our Buddy Walk ;o(

Goodness, we got there so late because none of the girls were really gung ho about leaving home today, we missed the walking part entirely and spent the time there just chatting with really nice folks. Honestly, I love to chat, but the day was about my children, not me, and I did not feel much of a celebration going on, maybe because I missed the walk part?


Pictures I took of the girls before we left, you can see how they felt about going.

I think that folks planning the Buddy Walk need to find their inner child, because looking at from a child's POV, it was not very magical, and from a teens, maybe a bit more interesting, they had a band. I cannot tell you what the adults felt, but even they seemed blase' about the "party to celebrate them"..

That is all I have to say about this, probably said too much already, it was just OK, which is sad, because it should be AMAZING.

31 for 21- The Da Vinci Players

Our son Brian is an actor, for a few years he has been associated with a local theater group; "The Da Vinci Players" from Studio Connections.

Last weekend we took the little girls to see "Man of La Mancha" and as always, were impressed with all the actors, the show was wonderful. Got a great review and of course proud mom loved seeing her sons name :

From the review:
Around these three principals are arrayed the "sane" people of the world: the well-meaning innkeeper (Todd Luethjohann), a spineless priest (Rob Roberts), the cynical Dr. Carrasco (Brian Levario) and Quixote's calculating niece (Julia Higgins). Encila has chosen his cast well, and each of these performers shines.

It was difficult getting up the energy to go, we had a long week, a funeral that broke our hearts, audiology appointments for all three girls, ugh, three hours in a small office with three active girls...and a choral concert, and our schedule was a little off, which in turn throws off the girls behavior as well. Now normally we take the girls to a play and they watch happily, clap when the acts are over and are the best audience members, except this time the audience was, well, grumpier than normal and the girls were exhausted from a crazy week too.

Kara was wiggly at the play, Amanda decided that she should sing a long with the cast. We got those backward glances from people when they made a noise, all older folks...60-70. At one point after Tom and I switched kids on laps, Kara began to do the slide, are you familiar with the slide? When your child seemingly loses their bones and oozes repeatedly to the floor from your lap in a puddle then quickly regains their use so they can run around. Meghan did the slide on the way to Ukraine, but she was half asleep and just wanted to lie on the floor and sleep. Amanda began singing with the cast very loudly, she purely loves music and is moved to join, this is just plain truth! I could not get her to stop, and did not want to ruin the play for others, so I got up to take her to Tom, who already exited to keep Kara happy. As I was trying to climb down a very steep step, a woman in the back placed her finger to her lips, scowled at us and said SHHHH. She turn her head indignantly as I left, oh it irked me. To be clear, we have always removed our children if they are disrupting a movie, play, musical performance, but we find some people less tolerant of our girls because they have Down syndrome, and you can always tell who these people are, our girls make them visibly uncomfortable.

Tom decided to take both girls to the van, and I stayed and watched the first act with Meghan, she was a perfectly happy girl, watching the show and loving one on one time with mommy. She kept snuggling with me and kissing my cheek, we need to get out more, just she and I. Except my thoughts turning to Tom missing the show. We have never had to remove the girls from one of Studio Connections plays before. The audience has always been very sweet to us, and understanding of the girls too.

At intermission Meghan and I went out to the van to find Tom sitting in the open sliding door, Amanda playing in the back seat and Kara eating. (Kara is always eating). He said he was perfectly OK being out there and I should enjoy the show without him, he was going for a drive with Kara and Amanda. I love him for not being mad about leaving, I missed having him there. He said, he wanted to tell that woman, "Of course Amanda wanted to sing, she is Estonian after all". I was still perturbed at the woman who rudely shushed us. I dislike people acting in a bad way and excusing themselves because they feel you messed something up for them. That righteous justification...maybe she was from New York? (family joke)

Meghan and I returned to our seat for the second act and the woman sitting next to us asked where Kara and Amanda were. I told her people were getting annoyed with them, especially the woman who got vocal about it. She said "F*** her, yes, my mouth was agape too, your girls had the right to watch the play too, and they were just enjoying themselves, and what a shame people had to act so rudely". Have to love it when people say what they think.

We watched the rest of the play, met the cast, and found our son, we told him we were sorry about his sisters, he said it was fine, they were fine.

The next day Brain and I talked about the show, I told him about the people who were annoyed and how we were afraid his sisters would ruin the play or cause a scene, which is why we removed them. He said he told the entire cast his sisters were coming, and if they heard slightly off key singing coming from the audience, it was likely them. They had been waiting to hear something, when Amanda joined in, someone asked "What is that" and Brian said, "my sister", and everyone smiled. He said they were all OK with the girls too.

Studio Connections has always been a comfortable and safe place for us to take our girls because everyone has always been understanding if they get excited or Meghan says hi to her brother while he is on stage...we have always felt accepted there and it gave us a chance to do something as a family. So it makes me sad that as Studio Connections gains more recognition and more people attend the plays, some of those people will not be as accepting of my three little gals as the previous audiences were.

Studio Connections is moving to a bigger theater after this show, they have outgrown this one which is fabulous for them, they are successful! However I am rather sad too, it means it may become one less place I can take my three sometimes loud, sometimes unruly children, a place where they are completely accepted. I am realizing that there are not many places where they are, and it makes me angry and sad.

Hopefully my girls will outgrow this phase soon...they had always been better behaved (not perfect) before.

"Why didn't we leave the girls with a babysitter?" everyone asks us this when they see the girls with us. They never take their kids to adult performances, they stay home with grandma. My children have one grandmother and she does not live here, and if she did, she is not up to caring for them, she has too many mobility issues. We tend to not ask immediate family to take care of their sisters, they have their own days planned, babysitting is not usually on their lists. If they volunteer, great, if not, oh well. What about their respite worker? He is Brian, who was in the play.

We want the girls to be able to enjoy theater too, and "Man of La Mancha" was a musical, which they love the best. For some of the more serious plays, we do try to find someone to take care of the girls, but our options are severely limited, honestly, we usually miss those plays completely. However we want the girls to understand what it means to be a respectful audience members.