Our little water rats :o)

The girls have a small wading pool for the hot summer days, yes, we sure wish we had a in ground pool, especially for US when it gets hot, but ya know, the stress of keeping the girls safe with one, well, I will pass. Too many kids drown in AZ every year in backyard pools. With this pool, we fill it up every day and then pour it out using buckets that get hauled to the citrus trees and then water the grass with the rest of it. The girls stay safer that way.

We cannot get Amanda out of the pool once she goes in, but she does not like to share, she gets upset when Kara and Meghan join her, and usually neither of them do, so Amanda plays for a couple of hours, as you can see, she gets to wear a tee and hat, as she gets burned otherwise, but the girl is TANNED and it looks so sweet on her. LOL

Kara also likes the pool to herself, but does not like the pool as much as Amanda, and Meghan, with her fear of water, only gets in when she feels up to it. She is getting a little better.

Some pictures from my phone one year old.

I am one of those people whose children know more about their phone than I do. I have an old LG, takes pictures, plays music, I barely use it, I rarely leave home, who needs it when I have the home phone?

I have been taking pictures with my phone for two years, I am finally downloading them, lots of before and afters, they are not high quality images, but they are special to me.

Look how tiny our girls were last summer. This was before we brought Amanda home, they still get in the car that way, but they do not have as much room. :o)

Meghan climbed in the stroller after we took Amanda out to have her fitting for her SMO's. She is too big for the stroller, now, she seemed to grow overnight, it always sees that way, doesn't it, and Kara is SO BIG now.



Kara was home for 1 1/2 months here, still looking a little shell shocked, she was adjusting slowly to life in our family

Kara today at the orthotists, such a different little girl, so giggly and open. Amazing to be able to see the transformation. She is such goofy little girl, toddles around and smiles and plays. She likes food too much and we have to keep it out of reach, she decided nutter was fun to eat and broke my butter dish the other day, it is impossible to find a replacement and I am a little sad about it. I glued it.

This was taken in September 2008, Amanda had been home for two months. Oh goodness, she was so pale and tiny. Well she will likely always be tiny.

Amanda today, she has a tan! LOL, She is playing in the pool too much, with her Carotenemia, she has a golden tan.

She is such a sweetie pie, but stubborn and can get mean in a blink of the eye, mommy is sporting a scratch on her face, courtesy of Manda Moo.

Yea, yea, yea, I know, where have you been?

I know, where have you been? Why haven't you updated? Simple explanation, I did not feel like it, hows that for honestly? I did not think very many folks actually read the blog, it was more for me than them, and it was time-consuming to post in it, so I just stopped. Slowly I realized that I was not keeping record of milestones, I always posted them here, so I had a reminder of them later. I will try to do better.

We are pretty boring; boring is fabulous, as we have been otherwise before, and I do not wish for exciting any time soon (as in illness or strife). Some of my sons are making some serious decisions about their futures. Though we are worried, we will support them in their choices. Julia and her boyfriend broke up, it has been very hard on them, and on Mom, who hates to see anyone in pain. We have another set of kittens in the house, and yes, we know about spaying...5 kittens, two black with boots, two Siamese-looking, and one grey tabby. The kittens are always born between the 25th and the 28th of April. Without an international trip to go to this year, we are wondering how summer will be for us. Though I believed I may go to Nicaragua, I do not think that is in the plans any longer. Personally I wish we were going somewhere exciting, but after paying for two international adoptions, we have no savings to play with.

Our school district, the main one that Tom works for, is cutting music and art classes in an effort to balance their budget. They eliminated my husbands position (choral and general music), though he remained on the job due to tenure and seniority. He got his Masters in educational technology, and guess what he will teach next year? They threw him a bone and let him keep ONE chorus class. When will they realize that the arts contribute to overall intelligence? How many studies will they ignore? There are none so blind and they who WILL NOT see.. Makes me terribly sad for all the children who will miss out in learning to express themselves creatively. Have you seen the ads on TV to bring the arts back into schools? Let me tell you that even if they raised money "for the arts" the schools decide where the money can best be spent, and they may decide to use the "arts" money for new computers or football equipment. Giving money to school districts for programs you want to see in the curriculum will not work. Advocating for the return of the programs will, en mass; but how many parents care enough to try?

Oh well, enough of that, it is a sore spot in our family, two children sing, 5 play musical instruments, two are in musical theater. Two are visual artists like their mom. So yes, we believe in the importance of art in the lives of every man woman and child on the planet. Enriching lives, improving cognition, maintaining attendance in schools? Nah, not important.

We were happy that Meghan was approved for another year of swim therapy, she is terrified of big pool, she also will keep speech therapy once a week. We got a new SC for our girls, I met her briefly, she is an older woman, and because I stink at remembering names, I can't remember hers.

Therapy takes up a few hours a week for us, Kara has speech on Mondays, Amanda had feeding therapy on Wednesdays, Amanda and Meghan have Speech on Friday, and Meghan has water therapy on Saturday. We are still waiting to hear about a physical therapist for Kara and Amanda. I do not know why it is taking so long, time to make another call.

This is the last week of school for everyone, I am so happy Meghan will be done, she had a relatively good year, and of course we are not going to stop teaching her over the summer. We have Handwriting Without Tears and will use it to help her with her writing, got some Squizzers so she can cut better as well. Some fine motor issues need to be addressed with her. An OT from her on-line charter called and began to tell me what Meghan needed, not because she evaluated her in person, but because "All kids with Down syndrome have these weaknesses". I am afraid that statement sends me into anger very quickly, please people, do not generalize, children with Down syndrome are as different as typically developing children. Angry advocate mommy emerged, then I had to apologize... tell me, why does that statement make me so mad?


After seeing Meghan's pictures I realized her swim suit is too small, looks like we need another one. I adore this one she has, maybe I can find a larger one on eBay? She has become such a mother hen to her little sisters, she has also taken to putting the groceries away when we go chopping. Sometimes puts things in the freezer that don't go there, but she does a great job with putting everything in it's place.

I cannot believe that Meghan is close to her tweens. She changes more everyday and we are hoping that her speech continues to improve, though I understand her perfectly, many people cannot. She is a little girl with so much to say too.

Kara was running a fever the night before, not all that well when she got in the pool, the water was not all that cold because the sun had warmed it, but she was not laughing and playing like she normally does. She and Julia both have coughs.

Finally, somewhat of a smile on Kara's face. When she feels sick, there is no denying it. I hope this passes quickly for her. Normally she is like the Tasmanian Devil, she whooshes through the house wrecking havoc. She also giggles the entire time she destroys things. Such a stinker, Kara is always the child people gravitate to, they adore her, and she is endearing and oh so cuddly, she melts into your arms and gives the sweetest hugs.

Kara is such a pretty girl, whereas Amanda is tiny and fragile looking (but is not fragile at all); Kara is robust, a little chubby, wide shoulders, tiny hips, built like a gymnast. She has also grown the last couple of months and moved into 4T's in some clothing. Meghan did not wear them until she was 6. We will have to watch Kara's weight.

Me to our speech therapist; "No Amanda does not put anything in her mouth." Uh hum, and look, she is eating a sucker, can we say blushing crimson, though I admit it, proving mom wrong in this instance is a great thing. It was a icky sucker with artificial ingredients and dyes, and yuck, she loved it, don't kids always love those very things, I buy organic suckers for them all the time, Meghan loves them, but Amanda prefers the icky ones.

Yep, she needs her bangs cut, AGAIN.

Amanda does not like the swimming pool, no way, I put her in the day after we bought it and she had a melt down, but leave her to her own devices and she decides to try it again. She spent two hours sitting outside of the pool splashing,. I guess she decided it looked good after all. She climbed in fully clothed....Meghan and Kara decided it looked like a good time and joined her, Kara took off all of her clothes and got in, whoops, and Meghan put on her suit and joined both of them.

It is fun to see Amanda overcome her fear of the water, clothing dries!

Looks at that hair, please tell me you do what I do and you wash your kids hair when they are in the kiddie pool, Amanda hates baths, so I decided to get the shampoo and have at her in the pool, I also put some Burt's Bees Baby Bath in the water...two birds, one stone...:o)

We took all the girls on a ride to the grocery store last night. I was closing in 10 minutes, so the little girls stayed in the van with me and daddy ran in to get what we needed. Amanda had a fit because daddy did not take her, she began to sob in the back seat and was inconsolable. When daddy came out of the store 8 minutes later, he took her out of her car seat and held her. She slapped his face and yelled at him... hmmm, did I mention those two adore one another, but the slapping needs to STOP. He did calm her down a little, and guess who gets to go with daddy next time he needs to pick up something from the store. :o)

Amanda cried as we drove away from the store, such a desolate little cry, heartbreaking. Her sad cries made Meghan cry in sympathy and Kara joined in because she was already feeling poorly. Tom and I just smiled at each other, the girls love one another, none of them want to see the other one in pain. Though a chorus of girls crying is not a pleasant sound by any means, it was one we were happy to hear.

Julia is pretty petite, check her out on the rocking dog, and yes, she told me not to post this picture, but it makes me smile! Sorry Julia LOL.

Just a picture

I snuck this one of Meghan.

Appeals Court rules DES can trim funding for disabled

This article is from the Daily Star, May 1, 2009, I am so saddened and disappointed in the judges who made this ruling. Can you imagine how many people with disabilities will lose everything they had to help them be better able to live as independently as possible?

Tucson Region

Appeals Court rules DES can trim funding for disabled

By Howard Fischer
Capitol Media Services

Tucson, Arizona Published: 05.01.2009

PHOENIX — Arizona is free to cut services to an estimated 30,000 residents with developmental disabilities, the state Court of Appeals ruled Thursday.
In a unanimous decision, the judges found that nothing in state law bars the Department of Economic Security from reducing services, overturning a trial-court ruling blocking cuts made in response to a legislative order to trim spending.

The three-judge panel rejected arguments that those who have been getting help from the state are legally entitled to the services that have been specifically recommended for them.

The judges also concluded there was nothing illegal about the state reducing what it pays to organizations that provide services to those with disabilities — funding cuts challengers said would affect those services.

Thursday's ruling comes less than two months after Judge Joseph Heilman of Maricopa County Superior Court blocked the DES from cutting services. Heilman said he had reached the "inescapable conclusion" that the haste with which DES acted in cutting its spending "has served to create nothing less than mass confusion, anxiety and uncertainty" among those who receive benefits from organizations paid to provide services.

Heilman also said the DES acted to reduce services even though lawmakers did not relieve the agency of its legal responsibilities to provide care for those with mental-health problems.

Jennifer Nye, an attorney for the Arizona Center for Disability Law, said she was disappointed in the ruling.

"We know that thousands of adults and children with disability are going to be harmed by these cuts in services and rates," she said. Nye also called it "very shortsighted on the part of the state to balance its budget on the backs of its most vulnerable population."

Lawmakers made $580 million in spending cuts in late January as part of a plan to deal with a $1.6 billion budget deficit.

The DES share of that was close to $100 million. But the agency said its total cuts really amounted to more than $150 million, with cash taken from special accounts and the refusal of lawmakers to provide additional needed funds.
The DES, in turn, cut payments to service providers by 10 percent. It also eliminated services for people who are moderately developmentally disabled who, with support, can work in the private sector. And it dropped funding for early-intervention services for 2,000 children, from birth through age 3, who are at risk for developmental disability.

The appellate judges said lawmakers did nothing wrong in making a lump-sum cut to the DES budget and letting the agency decide what services to trim. They said legislators were faced with "a sobering assessment of plummeting revenues."

UNDERSTAND WHY by BERNIE SIEGEL, MD

UNDERSTAND WHY by BERNIE SIEGEL, MD

Many years ago my great grandfather told me of the persecution he experienced in Russia which led him to come to this country. He said the Cossacks would pursue him at night, when he was out teaching, and slash him with their sabers. One night he was on the hill above his village with his rabbi, the Baal Shem Tov. As they looked down they could see the Cossacks riding down and killing their Jewish brethren. They might have felt the same had they seen their loved ones being taken away to become slaves in a foreign land.

My great grandfather heard the rabbi say, “I wish I were God.”

He asked, “Do you want to be God so you can change the bad into the good?”

“No, I wouldn’t change anything. I want to be God so I can understand.”

Remember our present problems are not new to mankind. Ninety percent of the natives of South America died when the explorers brought infectious diseases to their continent that they had no immunity to and forty per cent of Europeans died during plagues of the past. Man made wars and holocausts have taken millions of lives and with today’s destructive weapons we are more of a threat to each other than are infectious diseases, which we can learn to resist. The question is not, will there be difficulties and threats to our existence, but how will we deal with them and what can we learn from them. How can they become blessings to society, as a life threatening disease is to an individual, by teaching us about the meaning of our life and existence?

When I was a young boy several of my friends became seriously ill and one was hit by a car while bicycling to my house. When they all died I asked my father, “Why did God make a world where terrible things happen? Why didn’t God make a world free of diseases, accidents and problems?”

He said, “To learn lessons.” I didn’t like that answer and asked my rabbi, teacher and others. They said things like, “God knows, Why not?, Who knows?, That’s life, To bring you closer to God.” Some were honest enough to just say, “I don’t know.” This didn’t leave me feeling satisfied or enlightened. When I told my mother what they said she answered, “Nature contains the wisdom you seek. Perhaps a walk in the woods would help you to find out why. Go and ask the old lady on the hill that some call a witch. She is wise in the ways of the world.”

As I walked up the hill I saw a holly tree had fallen onto the path. As I tried to pull it aside the sharp leaves cut my hands. So I put on gloves and was able to move it and clear the path. A little further along the path I heard a noise in the bushes and saw a duck caught in the plastic from a six pack. I went over and freed the duck and watched him fly off. None of this seemed enlightening.

Further up the hill I saw five boys lying in a tangled heap in the snow. I asked them if they were playing a game and warned them the cold weather could lead to frostbite if they didn’t move. They said they were not playing but were so tangled they didn’t know which part belonged to whom and were afraid they’d break something if they moved. I removed one of the boy’s shoes, took a stick and jabbed it into his foot.

He yelled, “Ow.”

I said, “That’s your foot now move it.” I continued to jab until all the boys were separated but still no enlightenment.

“As I reached the top of the hill I saw, in front of the old woman’s cabin, a deer sprawled on the ice of a frozen pond . She kept slipping and sliding and couldn’t stand up. I went out, calmed her and then helped her off the ice by holding her up and guiding her to the shore. I expected her to run away but instead of running away she and several other deer followed me to the house. I wasn’t sure why they were following me so I ran towards the house. When I reached the porch and felt safe I turned and the deer and I looked into each others eyes before I went into the house.

I told the woman why I had come and she said, “I have been watching you walk up the hill and I think you have your answer.”

“What answer?”

“Many things happened on your walk to teach you the lessons you needed to learn. One is that emotional and physical pain are necessary or we cannot protect ourselves and our bodies. Think of why you put on gloves and how you helped those boys. Pain helps us to know and define ourselves and respond to our needs and the needs of our loved ones. You did what made sense. You helped those in front of you by doing what they needed when they needed it.

“The deer followed you to thank you, their eyes said it all, for being compassionate in their time of trouble. What you have learned is that we are here to continue God’s work. If God had made a perfect world it would be a magic trick, not creation, with no meaning or place for us to learn and create. Creation is work. We are the ones who will have to create the world you are hoping for. A world where evil is to not respond to the person with the disease or pain whether it be emotional or physical. God has given us work to do. We will still grieve when we experience losses but we will also use our pain to help us know ourselves and respond to the needs of others. That is our work as our Creator intended it to be. God wants us to know that life is a series of beginnings not endings. Just as graduations are not terminations but commencements.

“Let me tell you about people who have been my teachers. The first, a teenager sexually abused by his parents who now has AIDS. When he was about to commit suicide by jumping in front of a subway train I asked him why he didn’t kill his parents instead. He said, “I never wanted to be like them.” Love has sustained him and he is alive today.”

“Another young man with a life threatening illness said, “What is evil is not the disease. Many great creative works will come from individual suffering but what is evil is to not respond with compassion to the person with the illness.”
“An example are parents I know who because they had a young child die are improving the lives of other children and raising funds to find a cure for the disease which took their child so other children will not have to die as their child did.

“How do we turn our afflictions into blessings? How do we use them to help us complete ourselves and our work and understand the place for love, tolerance and kindness? How can we learn as Jacob did from his experience of wrestling with an angel? Justice and mercy must both be a part of how we treat those who terrorize because when you understand you can forgive and when you can forgive you do not hate and when you do not hate you are capable of loving and love is the most powerful weapon known to man. It is not an accident that we say, kill with kindness, love thine enemies and torment with tenderness.

“As Golda Meir said, "The only way to eliminate war is to love our children more than we hate our enemies." When we raise a generation of children with compassion and when parents let their children know they are loved, teachers truly educate them and not just inform them and the clergy let them know they are children of God we will have a planet made up of the family of man where our differences are used for recognition and not persecution. Words and experts cannot be our Lord. Abraham did not bargain or refuse his Lord’s request and Jesus, who was capable of performing miracles, did not jump down off the cross to impress everyone with who he was. Our Creator must be who we have faith in so we can live as Abraham and Jesus did fearing only separation from their Lord. Think of what Noah experienced too. He didn't argue with God over what was about to happen. I think he knew that living was more difficult than dying and that we are all here to learn what it is to hurt and be hurt and only then will we be perfect enough to love and be loved.

In closing let me say that as a surgeon I know something you may not; that we are all the same color inside and members of one family. To paraphrase Rabbi Carlebach, let us hope that some day all the Cains, will realize what they have done, and ask for forgiveness of the Abels they have killed. In that moment we will all rise and become one family accepting that we are here to love and be loved. Until that moment may you accept and learn from your mortality what is truly important in the time of your life. Rather than from further disasters.

It has been rough going around our house lately, maybe yours too? I have not felt like writing on our blogs. Please pray for our family and family friends.

Happy Easter

We have been busy, still fighting the flu's running through the house, Kara was the latest to succumb to the belly bug. Brian has strep, and mommy is a rashy mess from being exposed to strep too many times, still, none of this is fatal, and we will all recover soon (me in a few months, scratch, scratch)

I took these pictures a few nights ago, we had a spectacular sunset, just breathtaking, I love that part of AZ.

We are excited to have Amanda her for her first Easter, she will like be non-plussed by it, but mommy and daddy are thrilled she is here this year.

All of us wish all of you a very Happy Easter.