Monday, September 28, 2009

E-mealz

E-mealz. I just heard about this today from a friend of a friend, so I've been sharing it with a few people who I thought would find it especially helpful. But I thought I'd just throw it out there. It looks like it could be a pretty great tool to lessen mealtime stress and spending!

In summary, it's a website that will give you a meal plan (with recipes) each week along with a grocery list for that meal plan based on the store you choose (there are a few specifically and then generic ones too) and using the sales for that particular time! How cool is that?!? And they have an Aldi list, too, which averages around $30 a week to feed two people. $30!! (They have family plans too.) It costs $5 a month to subscribe, but it's pretty clear to see that it pays for itself pretty quickly.

They also have specialty plans, for particular diets and such, like one that gives the Weight Watchers points for the meals. All in all, it sounds like something very interesting, and I'm going to check it out. It might not work at our house...with a certain excessively picky eater (and it's not Braska, me, or Kinlee!) but who knows. Maybe I'll try it anyway!

Anybody used it before?

Thursday, September 24, 2009

One very neat young lady

I saw this on one of the DS forums. I'd love to meet this girl for tea and have a chat.


Tuesday, September 22, 2009

Great article: Seen through loving eyes

Beverly Beckham writes for the Boston Globe and has many wonderful articles in her archives.  Sunday, she had another winner, called Seen Through Loving Eyes.   What do you think? Have you had similar experience? Share your thoughts in the comments.

_______________________________

My granddaughter Lucy is six years old and is part of a class of people that is quietly being eliminated in my country. She has Down syndrome, a genetic condition that frightens so many women that 92 percent of those who learn they are carrying babies with it choose to abort.

Dr. Brian Skotko, a genetics fellow at Children’s Hospital, fears this number will rise. Prenatal tests are invasive, carry a risk to the fetus, and are given in the second trimester, so many women choose not to have them. But a simple new and non-invasive blood test, to be given early in a woman’s pregnancy, is coming, perhaps as early as next year.

“As new tests become available, will babies with Down syndrome slowly disappear?’’ Skotko ponders in a soon-to-be-published article in the Archives of Disease in Childhood, (a British medical journal) available online now.

It’s easy to understand why parents fear a diagnosis of Down syndrome. You Google definitions of it, and even now archaic words and misinformation pop up. It’s the same in doctors’ offices. Pregnant women are told only the negatives. Old stereotypes linger.

My granddaughter cannot do all the things that typical kids can. She doesn’t come home from school full of stories. They may be in her head, but we can’t see in there. She speaks and sometimes we don’t understand. She can’t make a teddy bear with paper and glue, not without help. She can’t understand why her grandfather would rather watch baseball than Shirley Temple. She does not have the same skills and abilities that her 5-year-old cousin Adam has.

But Adam doesn’t have the skills and abilities she has. He doesn’t always enter a room and greet everyone with a big smile. He doesn’t always leap to his feet and race to his father when he comes home from work. He can’t sit for hours in a fancy restaurant or through a long movie. And he doesn’t know instinctively when someone is sad and needs a hug.

He can field a ball and she can work a room. He sings a whole John Denver song, and she sits and applauds.

This is what doctors don’t tell mothers having babies with Down syndrome, that you will see in your child amazing things that you won’t see in ordinary children.

Of course, parents want healthy kids. And some get them. But children get sick. They get in accidents. They lose limbs. They suddenly stop talking one day.

Children in wheelchairs, on ventilators and crutches? Children hooked up to IVs getting chemotherapy? People on waiting lists for transplants? People with chronic diseases. Soldiers changed by war. Civilians changed by an accident.

They weren’t born this way. But if there were a test that showed their future - that showed diabetes and cancer and autism and muscular dystrophy and mental illness and depression and alcoholism - would women take it? And seeing what would be, would they choose to abort?

Last week we took Lucy to Davis’ Farmland in Sterling, where we played with the animals. Then we went to a wine tasting at Nashoba Valley, where Lucy drank juice and shared our cheese and crackers and enjoyed the day.

All kids with Down syndrome are not like this. But this is Lucy. She makes me notice the ordinariness of people who don’t have it.

In the play “Cabaret,’’ set in Berlin as the Nazis rise to power, a man loves a woman he’s not supposed to because he’s Christian and she’s Jewish. He tries to explain his love to his friends. And because “Cabaret’’ is a musical, his explanation is a song.

“If you could see her through my eyes, you wouldn’t wonder at all. If you could see her through my eyes, I guarantee you would fall, like I did. . .’’

Like I did. Like Lucy’s mother and father did. Like all the people who know Lucy and people like her did. Like the world would, too, if only given the chance.

Monday, September 21, 2009

Some answers for our normie

Just got back from the dr's office with KiKi. She has blisters on the back of her throat. Well, whatta ya know?! Something IS wrong! I'm relieved in a way, because this whole deal of the unknown is the most challenging to me. Dr. A also gave me a script for lactulose to help with her constipation too. Braska had this issue and did well on this med, so I'm glad she agreed to try it for Kinlee. Hopefully, if we can get those two things fixed (just pain support for the blisters) then maybe Happy KiKi will return.

I keep meaning to do a full post on this, but I'll just state it for now: "Everyone" seems to think kids with DS are hard work, but Kinlee is WAY more difficult and more exhausting and more frustrating than Braska has ever been in her almost 3 years. That doesn't mean we don't love her and enjoy her differences, of course, and there are rewards, but for the record, normies are no cake walk either in my book!

(Just to clarify our "normie" and "Downsie" terms... they are terms of affection given by M to the girls. Nobody is claiming they're PC, but if you've been around us AT ALL, you'll know that's not really a forte of ours anyway. So don't be upset... I kind of see it like calling a roly poly baby "chubkins" or "our little Michelin baby" or whatever. There's only love there, people. )

Divorce and Down syndrome

Jeffrey Pomranka, the COO of the DSAGSL, wrote a letter to the editor of the Post-Dispatch that was recently published.  It was related to the popular story from last month when a fan fell over the wall at a baseball game and was assisted by Albert Pujols.  The fan had a son with DS.  Jeff’s letter is well worth the read.  Click here for the letter and Jeff’s explanation.

I don't cotton to this, no thank you

It's possible that I am not meant to parent a "normie," as we call them affectionately in our house. A typical kid. One with 46 chromosomes. The regular kind. However you say it, and no matter how cute she can be at times, Kinlee is pushing my buttons in ways that drive me to the edge so quickly.

Something is up with her lately, and I'm so fed up with trying to figure out what it is. For the last week or so, she's been getting up again at night. Two--sometimes three--times in a night. Waking and screaming. I give her a bottle, she takes about 3 oz and restlessly goes back to sleep. In about 3 hours she does it again. She won't eat like she was doing before, bottles or baby food. She fusses all the time. It's a whiny, grunt/growl, complaining thing that wears on my nerves like I didn't think was possible. She won't sit still for the world. She must climb on me, stand in my lap, turn around, sit down, and do it again. All the while whining and being generally uncomfortable.

I can't tell if she's hurting, or if she's bored, or if she is tired since her naps are also all screwed up. Last week we had an insanely busy week, with appointments and events every day, several a day. Maybe she's just off her routine? But this seems excessive for that situation. But what do I know? All I have to compare it to is the easiest kid ever, always pleasant (99.9% of the time), self-soothing, pleased to have company or be alone. Braska is a breeze. Maybe Kinlee is sick. Maybe she's uncomfortable, because she also hasn't been having dirty diapers nearly as often. I just don't know and it's driving my crazy. She wants Mommy alot, but when I have her she's still unhappy and so restless and whiny, once again.

M was very good to take the girls with him to visit his parents on Saturday. I got alot done and I felt so much better. But when Kinlee got home she was a mess. She wasn't as bad while they were gone, but still not her happy self. Then yesterday we were down there again for football and she did ok, but still a bit weird at times. Then last night, up twice again, not wanting to go back to sleep, thrashing around. SOO frustrating. I'm spoiled, I know it. But knowing that doesn't help me either.

Maybe I'll take her to the doctor today just to check her ears/throat/etc. She has been messing with her ears some, but she has done that since she was born, and they've always been fine. Maybe it's a combination of everything, but if that's the case, what in the world am I supposed to do to fix it? Stay home and let her "reset" for a week or so? I want to help her. I want her to be happy. I want to be sure she's not actually needing something I'm missing, but this is hard.

[Just before I hit publish, she woke up, playing in her bed, smiling, but with a VERY crusty nose. After some un-fun cleaning of the nose, she was fine, went in Braska's room to play with her for a few before we take Braska to school. Seems fine, but how long will it last today... Any insights??]

Tuesday, September 15, 2009

Feeding this baby--What and how much?

Ok, all you moms with littles... I've never had a kid that eats before, so give me some help.

What do you feed a 7-month-old?
What's the progression from cereal to baby food to _____ look like?
How does the balance go between milk/formula and "other"?

And don't give me the "oh, you'll know...she'll tell you." I don't work that way... need some specifics here!

Thursday, September 10, 2009

Our worst fear

Today on one of my DS forums, a very small forum, one of the mothers posted that her precious little girl--only 2 months younger than Braska--"went to be with Jesus" on Monday after a "terrible accident." I Googled the little girl's name and found an article describing the situation. (I won't link for privacy purposes. They are not bloggers.) Little J was outside with her family while they were washing cars in the driveway. They noticed she was not right there with them, and they soon found her in their pool in the backyard, but it was too late.

It makes me physically sick. I can't even begin to imagine the pain and horrible darkness that this family is dealing with. The mom mentioned that the oldest daughter, a teen, is struggling with being there when they found the toddler and blaming herself.

I often fear accidents, I think about them more than I should. I pray for protection, for my own instinct and wisdom to keep them safe. But life on this imperfect earth comes with heartache. And oh my goodness, how their hearts must ache beyond comprehension just now.

For the first time today, I was thankful that we no longer have a pool, petty as it may seem. We've already experienced a fall down a whole flight of stairs, and that was enough to almost cause me to fall to pieces in a split second. I hope I never am given this kind of experience to prove my ability to get through it.

Please pray for this family. I'm pleading with God to provide them the peace that passes all understanding and to surround them with people who will be their strength when they have none of their own.

Hold tight those little ones you've been given. Every single day is a gift to be treasured. I need to remember that and live like I believe it.

Saturday, September 5, 2009

Oh happy day, Less question mark!

As a follow up to yesterday's post, I got word today that we will NOT be assigned to the new guy, but we will have an experienced coordinator after all. I feel SO much better.

I also learned some other info today that made me think I still have some kinks to work out, so I'll be taking care of that this next week.

I'll be SO glad when this transition/IEP stuff is behind us. I want to do the very best I can, but there's part of me who wants to just hide and let it all happen without me.

Friday, September 4, 2009

Trading a sure thing for a question mark.

I have mentioned before that our service coordinator with EI is the best.  And she is.  Or she was.  Today was her last day with First Steps, and I’m not anywhere near happy about it.  Sure, I wish her well, she’ll be a great asset at her new place and she’ll do a wonderful job.  The kids will be blessed to have her. 

But we’re less than 3 months from transition from EI to school.  It’s a BIG transition.  I’ve done my homework and I’m continuing to learn, but I was SO counting on her to make sure we got through it safely.  The timing is just so plain sad.

And, though I’m trying to be open-minded, our new coordinator is new to the First Steps system, and that is enough to make me not feel confident.  He’s probably very nice, he’s probably really smart, and he’s probably good with kids, but will he be full of experience and knowledge when I need it most?  We’ll see… I’ll hope so. I’ve just come to find out today that some that were in her caseload are going to a much more experienced person.  Since we’re transitioning in less than 90 days, it would have been nice to be in that crowd.

Thankfully, I’ve recently gained another ally in the process who I’ll be leaning on even more now.  I’m going to be setting up a meeting with her next week to touch base and get on the same page.  She’ll be involved with us for the next 3+ years at Braska’s school, so I’m looking forward to that.

It’s not the worst thing ever, it’s probably a really great thing for her, but still, I’m bummed that it will mean a less-than-smooth transition.  It’s selfish, I know. 

We’ll sure miss her, no doubt!

Thursday, September 3, 2009

It was HIS idea. Just to be clear.

M asked me to guest blog a recent adventure with medical procedures for the purpose of keeping further “surprise” babies from showing up.  I wish I had video of the whole experience. As his mom put it, it was “comedy gold.”

If you’re interested in the “Snip/Tuck” story, click here.