Oh no, forgot a day

Still trying to get better from our colds.

Meghan had another alopecia treatment with the squaric acid and we are trying to find out if we can self-administer it, as it is getting expensive to have to go every three weeks. The good news is it keeps Meghan's hair from falling out, and that helps her self esteem.

I got some creme for Kara's eczema, her cold has made it re-emerge on her cheeks and her thighs, she has the worst of the cough, I know she had bronchitis in Ukraine a couple of times, that tends to recur, so if she is still feeling badly tomorrow, we will take her in to the pediatrician. The doctor told me to put it on Amanda's mosquito bites, the Skin so Soft seems to be working some, but the mosquito's bite her wherever we miss a spot, like her eyelids and ears, the nasty suckers, poor Amanda. At least her arms and legs are clearing up.

The little girls got some pretty little dresses from our friend Melonie, they are so sweet, and I want to get their pictures done in them. Thank you Melonie! BTW, Julia is wearing her bracelet!

Goopy noses, watery eyes, bad tempers (kids) and grumpiness (mom) :o)

Wish I could say we are all better, the girls have coughs now and their noses are forever running or getting goopy and green, icky. They do not like their noses wiped at all, especially Kara, who fights like a tiger to prevent it.

Meghan is still OK, I hope it stays that way.

It is Julia's 16th birthday today, I truly wanted to decorate the house, but with all of us feeling ill, it is not going to happen. I know she will feel sad about it. :o( Sometimes illnesses are ill-timed too.

Our boring day

Since the little girls are feeling so down, we had a quiet day today. Meghan and I did her schoolwork, still need to do speech. Kara slept for a while, and has played outside most of the day, Amanda refused to take a nap. She has been so sweet today, seeking me out to be held and just chuckling when I pick her up. She tries to kiss Mama with a snotty nose, don't know about you, but booger-y kisses are not my favorite. Here comes Amanda again! She is sitting with me. She kicks the keyboard so that I can't type. Kara and Meghan joined her.

So much for blogging. :o) I am such a lucky mommy.

Sniffles and coughs

None of us are feeling all that great, I was feeling happy about how healthy the girls had been, and bam, we all caught a cold.

Oh well, this too shall pass.

Not much to say to day, just wanted to post as promised.

Such a great tribute to our kids

OCTOBER IS DOWN SYNDROME AWARENESS MONTH Click on syndrome to read this great article.

Stereotypes and Down syndrome

Baby Meghan, after her bath

We always get reactions when we take the girls out, most are positive, we kind of ignore the others, we are used to be stared at, makes me want to be sure I am well dressed. LOL

Most people who do not have someone with Down syndrome in their families assume that all kids with Ds are affectionate, outgoing-friendly, and lovable.

Meghan was the first child we have seen who is not all of that (we have seen many more since she was born). She is cautious around strangers, shy even, does not hug anyone unless she knows them well or they are children, she will hug and kiss other children, much to their dismay. Today in the pediatricinas waiting room she was sitting by a couple with a 3 month old baby, she was entralled with the cute little girl, but I had to lead her away. The mom and dad we using that happy voice folks use when her attention makes them uncomfortable.... She does not seek out the company of adults unless they have small children, and then she would follow them anywhere, not SAFE at all, we have to be very careful with her.

She is also quick to lose her temper and she lets you know, can be uncooperative, hates doctors visits and refuses to stand on scales. (who can blame her, she is a girl, we all dislike that!) She literally freaks out when she sees a person in a white coat. She also does not like therapists, they have been in her life since she was 4 months old, but she has zero tolerance of them., except for her beloved speech therapist, but then she is more like family now.

She hates having her hair washed, and she likes to dress herself. Often mismatched clothes, picking shoes from two different pairs, usually on the wrong foot. Lately I am proud to say, she has chosen matching clothes and shoes, maybe she does listen to me? What drives me crazy is her changing them 3-4 times a day, ugh, so much laundry.

Now Kara is the affectionate and outgoing stereotype. She is everything people expect from a little girl with Ds. That friendlieness; going to and hugging strangers, that is our Kara, people are enchanted by it, but it bothers Mama because it can be dangerous. We need to teach her that it is not safe to be so open. Certainly with trusted friends she can be, but she does not discriminate between family, close friends, as opposed to strangers.

Kara is not cautious with anoyone, she is less of a daredevil now that she has been home for a few months, but she still seems unaware of danger.

Kara has a slow temper, but when she gets upset, she is slow to recover, she prefers whining to crying, and is very dramatic about it. She does not mind having her hair washed and just tolerates it, which is good, because she often puts her food in her hair and needs baths twice a day to wash ot out. I cannot get her out of the bathtub, she loves being in there.

Will talk more about this Saturday

Day 2-31 for 21

Yesterday I spent the day researching Aniridia, it is a rare genetic disorder, 1 in 60,000 people have it in America. Of course Amanda was not born here, and it seems it is slightly more common in Estonia.

Though Amanda seems to have a few more issues besides Down syndrome, we just look at her sweet little face and feel overwhelming love for her. Her having Down syndrome, plagiocephaly, partial aniridia, strabismus, extreme hyperopia, PSLVC, and autism spectrum; well, they are all part of who she is. I guess what bothers us sometimes is that others do not find her as endearing or as special as we do, more often they feel pity for her, and protective, which is good, because it makes them more willing to help us help her. We have been told several times that her behavior and appearance are "off-putting". People are being honest, it is true, but if they spent all day with her they would see all of the things that make her our special and beautiful daughter.

This Aniridia website describes some of the issues people with Aniridia face, I can find many issues Amanda has , but they can also be associated with Down syndrome. I am fact finding, and she will see her pediatrician tomorrow. Hopefully he can refer her to a neurologist for an MRI, and we can get the US of her abdomen done to check for Wilm's tumor. We will see what he says tomorrow. Meghan has a swim lesson tomorrow and Kara has pre-school, tomorrow will be another busy day for us. I think the hardest part for me is feeding all the girls on their schedule when we are running around, and nap time is completely disrupted, and that makes for some very grumpy girls, especially Kara.

Tuesday night Kara was inconsolable, we woke her up from a late nap and her pupils were still dilated from her eye exam, she was really upset about it and refused to eat dinner. We had to turn down all the lights to help her calm down. Meghan also has a really hard time recovering from the dilation, it takes her twice as long, no doubt related to low tone and likely combined with slow metabolism? Amanda's eyes did not really change when they put the drops him, her pupils are always pretty large, in fact, it did not seem to bother her at all.