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.

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.

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.

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.

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!

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.

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.