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Showing posts from September, 2009


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&

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

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 "nor

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 t he 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

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!

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

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.

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

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 .