Anju pics (catch-up)

Enjoying her birthday watercolors

Book bingo at school

Anju won quite a few books for someone who refused to play bingo!

Diva Anju!

South Indian Musician Performs in Northwest MN! (posted by Shawn)

When we want to expose our children to various cultures, other than Scandanavian or Native American, we usually have to drive 250 miles to the Twin Cities. But, thanks to a tax levied on Minnesotans that also supports fishing and hunting, our local library was able to sponsor a concert by South Indian musician Nirmala Rajasekar. She plays the veena, which is the national instrument of India. The Saraswati veena is a seven stringed instrument with 20 frets and a bell. The veena may be traced back 2,000 years, and there are references to forms of the veena in Hindu scriptures going back 4,500 years. Nirmala was born in Chennai, where my sister's fiancé is from. She began her performing career in Bangalore, where Anju was born. She began studying the veena at age 6 and has been playing for over 30 years. She has played at Carnegie Hall and for the U.N. and now has played for 25 northern Minnesotans in a library. I assured her that there was one South Indian in attendance!

Anju really responded to the music. She was shaking her head from side to side and tapping the beat throughout. The music is called Carnatic, which refers to southern India. It was very different from the music of Ravi Shankar, who collaborated with Beatle George Harrison. Ravi Shankar's sitar music is from northern India or Hindustan. Carnatic music is much more melodious. The veena is similar in tone and in phrasing to the human voice. Three base notes- drones- are strummed and the four higher notes are picked.

Nirmala was accompanied by a man playing the mridangam, an Indian drum. Anju, for whatever reason, thinks it was hilarious that the mridandgam player had a mustache. She laughed about it at the concert, and now days later is still laughing and saying, "The man at the show had a mustache!"

A question and answer session followed the concert. The most embarrassing northern Minnesotan question was "I thought Indian women wore veils." Nirmala shrugged it off, replying, "I think you're thinking of Saudi Arabia. Indian women can dress however they want."

SB Clinic Report

I received the report from the clinic in the mail.

The pediatrician reports: Lower back is soft and swollen with fluid. Tight heel cords, left more than right. Everything else normal.

The physical therapist gives her age equivalencies: stationary activities= 41 months, locomotion= 31 months and object manipulation= 28 months. In 12 months, this shows a 20 month gain in stationary skills, a 14 month gain in locomotion skills and a 6 month gain in object manipulation skills. She displays tight heel cords, with toe-walking on her left foot.

Anju's urology report shows that her renal ultrasound was normal- both kidneys and bladder. Her urologist writes that he is "extremely pleased about these findings."

The whole team comes up with a formal plan for each kid after the visit and makes their group recommendations in the written report. Here's Anju's:

Diagnosis: #1: Myelomeningocele, #2: Short Stature, likely genetic.

Plan: Needs new UCB's, Plantar flexor stretches 3-4 times daily, Follow growth, Return in 1 year.

So, she's still small, and still a bit behind developmentally, but has made significant progress in one year. It cracks me up that they have added a diagnosis to her chart of "Short Stature". I was very happy to see that her ultrasound was normal--as I'm expecting this to be one of the first things to go (along with further leg tightness). As I've stated in the past, this is a condition which starts out as good as you're ever going to be and regresses with growth and age--so I'm glad that right now she's functioning so close to normal.

More about how this relates to Anju's tethered cord syndrome here.

We're rejoicing with our wonderful report! Now I need to post my kidney on Craigslist or Ebay to pay for her new orthotics. :-)

Highlights of yesterday's trip to Fargo to the myelodysplasia clinic with Anju:

1)Waking up at 5 a.m. to make her her 8'o clock registration and trying to stay awake through the 5/6-hour appointment.

2)Driving over 200 miles through constant rain or snow.

3)Trying to get a 3-year old to pee in a cup on demand. Doesn't anyone in the medical field have small children? My husband says I'm complaining about this too much, but I don't remember him spending 20 minutes on the floor of a hospital lab bathroom trying to encourage a reluctant child to pee, or then walking all the way across the hospital back to the clinic only to have her THEN have to go potty and of course peeing in her pull-up 30 seconds before the cup was ready.

4)Renal ultrasound twice--once with full bladder, once after the pull-up was full.

5)Questions from nurse/social worker:

"Anju, did you come in a car seat today?" "Too tight!" (Made her wear her winter coat.)

"How is it going with your sister, Solveig?" "Sobay nice."

"How is it going with your brother, Jonah?" "Donah mean."

"What do you do with your mom?" "Puzzle."

"What do you do with your dad?" "Wre-ttle."

6) Anju's doll, Violet, passed her eye exam with flying colors.

7) Upon seeing a girl in the waiting room with pink arm crutches, Anju tried to remove her shoe inserts and said, "I no want these anymore. I want pink things help Andu walk."

8) Anju befriended a little boy in the waiting room who spoke Spanish with his mom, but English to her. They both had juice, so of course had to be friends.

9) Anju was a brave little girl who allowed an eye doctor, pediatrician, urologist, orthopedist, physical therapist, nurse, and ultrasound technologist to examine/touch/play with her without too many tears. The worst was the ultrasound. She didn't like the jelly on her tummy and there were a few tears and "I no want this."

10) Everyone said she was doing wonderfully. We will find out results of the ultrasound next week. I'll give the official report when I get it in the mail from all areas.

11) Only current needs: Her left heel cord is so tight that she can't put her heel flat on the ground. The right one is also too tight, but not so bad yet. We need to do some therapy exercises with her daily to help loosen these, as they are causing her gait to be awkward. If the exercises are not successful, the next option is Botox injections or surgery in a couple years. The physical therapist seemed pretty confident that at this point the exercises would do the job.

She has outgrown her shoe inserts, and will have an appointment next week to have casts made for new ones. The orthopedist said they're working well for her, and perhaps next year she'll be able to downgrade to just custom insoles. Great news!

12) Personal highlight- getting myself a mocha at McDonalds before arriving at the clinic. Instant happiness. :-)

One of those days

Let me preface this post by saying that making the decision to add another child to our family via adoption, and specifically following the path which led us to Anju, was one of the few decisions in my life that I feel was 100% right on. I've no regrets, and she is not only a perfect match to our family, but fills a gaping hole that was in our lives that we didn't even realize was there. I can't imagine my life without her, and she brings me joy beyond description, as do my other 2 children.

However. Yes, I'm going to say it, however, there are days. Anyone who is a parent knows there are days. I've been parenting for over 10 years now, and I know full well it comes with the territory. They're cute when they're sleeping. They're cute when they mispronounce a word or sing a funny song. They're cute when they're telling you they love you with their tiny hands on your cheeks. They're not cute when they are throwing up on you, their bed, the floor, their doll, their sister, and pretty much the whole house at 2 a.m. They're not cute when they're blatantly misbehaving in public where they know your retaliation options are limited. They're not cute when they're demanding and selfish. This is called parenting and you sign up for both cute and not cute when you conceive or tell the judge you're committed to this child for life.

It's probably not PC to point out the difference between this adopted child and my previous biological children. I love them all equally- but differently. They are all unique with different needs, weaknesses, strengths and "tricks" to learn to help them grow. But Anju has presented me with unique challenges.

None of my other children had periods of "I neeeeed you Mama!" all day long. Of needing to be held 24/7. Of completely freaking out when the power goes out even though it's still light outside and clinging like a baby koala for 2 hours afterward. Of constantly testing to see if I'm around. And more. And more. I understand it. I know why she does it. It's expected. It's in every book. It's healthy for her. But honestly, sometimes I simply have hit the threshold of holding her. Of sitting with her on my lap for hours. Of listening to the "Mama! Mama! Mama! Mama! Mama!".

Once in a while, I'd like to be able to hold one of my other children on my lap before they're too old to want to. Anju rarely allows this. I'd like her to "need" her dad sometimes--maybe as often as she "needs" me.

I'm only human, right? Moms are just people---there's a Mother's Day card for you. They love their kids, but they have all the emotions (plus some) that other people have. There's no special valve that shuts off all desires for self once you've got a tot around. To me, being a Supermom means that you acknowledge that you just aren't super all the time. You're not patient all the time. You're not selfless all the time. You're not any of the things Hallmark says all the time- sometimes any of the time. (The Proverbs 31 woman? I think it says "Who can find one?" because really, where are they?) And that's OK.

Whew. It feels good to say it. All we can do is pray, and try to do whatever is within our power to do. Where our weak spirit fails, the Lord is there to help us carry on. I pray daily to help me respond to the needs of His little lamb the way He would want me to. There's no other way.

Now, I hear a little voice that needs me once again and so here I go. Happy Mother's Day!

Thank God for Mom Guilt!

Anju had her 3-year old pictures taken today. Now I can finally wipe off my "guilt" list the fact that my other kids were taken to the studio likely 5 times during their first 2 years of life and have photo albums full of 8x10's of babies/toddlers at various stages of development and to date Anju has a couple blow ups of orphanage pics (with mis-matched or wrong sized clothing) and a couple pictures I took in hers. While I think my pics are nice, it's not the same as a well-framed professional shot.

She posed like a true model, and although she was very serious through the whole shoot, she would laugh and smile when the photographer tickled her mother with the "tickle wand" or when she saw her Daddy play peek-a-boo with her doll, Daisy.

At the mall after the photo session, I was looking in JoAnn in the scrapbooking section (again, motivated by guilt in combination with a great sale) and ended up next to a grandma-looking lady who was admiring Anju. It turns out she has a granddaughter the same age as Anju who is also small for her age, and quickly in our conversation it came out that she also has a granddaughter who will soon be 5 who also has the same type of spina bifida Anju has. With one child born with lipomyelomeningocele in every 10,000 births, it isn't really an everyday occurrence.

And, this child lives not far from a good friend of mine in the San Diego area. In fact, the picture she showed me of the girl was taken at the Wild Animal Park only a few miles from my friend's home! Hopefully this mom will contact me, as her child is struggling with toileting issues and this is something I've done research on.

So, my "mom guilt" gets me some beautiful portraits of my princess, and some networking with another sb family. Maybe there is a purpose to it after all?

Little Anju

All the comments from strangers lately about how tiny Anju is, and "She's three?????" are starting to get to me. She's Indian, right? She's supposed to be little? And her growth was stunted by growing up in an institution, right? Plus, I know a couple other girls within a month of her age who aren't too much bigger than her.

Well, I decided to compare her growth to the Indian growth charts used by Indian pediatricians just to see how she fares compared to people who supposedly have her same background. (On the American charts she looks like skin-and-bones, ready-to-die, seriously ill/malnourished.) Keeping in mind, of course, that these are averages of "affluent" children.

Well, comparing her height and weight to two growth charts, here and here, she is still behind. Her weight is about the 3% on one and 10% on the other, but her height is well below the 3%.

I'm wondering how much "catch-up" growth is yet to come. I've also read that children with spinal defects tend to be short. Any India mamas or daddies out there with older kids that could shed any light on this issue?

Obviously, my Anju is perfect at any size. :-)