Sunday, February 28, 2010
There are a lot of articles out there with tidbits of this and that about Down syndrome and other diseases and conditions. There was the one last year about how people with DS lend a “cancer clue.” It is interesting to read this kind of thing, I admit.
This week I heard about news of a new link between DS and Alzheimer’s Disease. It’s a reality that people with DS develop Alzheimer’s far earlier than the average person, often between 30 and 40 years of age, but now they’ve noted some more interesting connections.
The article starts this way…
Nearly 20 years ago Huntington Potter kicked up a storm of controversy with the idea that Down syndrome and Alzheimer’s were the same disease. Now the evidence is in: He was right.
But this is the paragraph that caught my attention…
The first paper, by Antoneta Granic and colleagues published online Dec. 23 in Molecular Biology of the Cell, provides the mechanism behind previous work by Dr. Potter’s laboratory showing that all Alzheimer’s disease patients harbor some cells with three copies of chromosome 21, known as trisomy 21, instead of the usual two. Trisomy 21 is a characteristic shared by all the cells in people with the birth defect Down syndrome. This earlier work demonstrated that Alzheimer’s disease could be considered a late onset form of Down syndrome.
“…a late onset form of Down syndrome…”
How interesting… I’m still thinking about this, processing, pondering, and researching. But it is interesting.
Tuesday, February 23, 2010
Monday, February 22, 2010
Please be praying that her surgery and recovery go well and without complications. Click her button above to read her story and to check on updates from her family.
Edited to add: The surgery has had to be postponed due to Chrissie waking up with a fever today. It will be at least a month to be rescheduled. She is in a very dangerous situation with her heart in it's current condition. Please pray that she can hold on and be healthy so that the surgery can happen as soon as possible.
Sunday, February 21, 2010
I’m not a NASCAR fan. I don’t know anything about it other than cars drive around in a circle a million times and people seem to like it. Personally, I don’t see how that could be exciting, but whatever…if it revs your engine, that’s cool.
NASCAR is holding a contest for a special design car to appear in the 2010 NASCAR Sprint All-Star Race. A car design promoting Down Syndrome Awareness has been submitted. How great would that be to see this car speed around the track in front of thousands of people!
I clipped out some pics of the car, which are below. Someone went to some effort to put this together, and the kiddo on the roof is pretty cute, which never hurts. You DO NOT need a login to vote, and you can vote here every day for the next 8 days. Wouldn’t it be kinda cool if we could get the “DS gang” out in force to vote this into reality! Make it a favorite and vote when you log in each morning… not a lot of effort but a fun and effective way to spread awareness.
Tuesday, February 16, 2010
The girls and I got home yesterday afternoon, just as the gaming boys were packing the car. We said hello and goodbye and off they went. It was a really nice weekend for me, M had a good time, and the girls enjoyed Grammy’s house. So win-win-win. I’ll take it.
One of the projects I worked on was KiKi’s 1st Birthday video, and I finished it and got it on DVD, with some glitches initially, but I’m pleased with it. It’s on her blog if you want to check it out. My favorite part is the documentation of my little pastry chefs assisting me with the cakes.
I didn’t get as much accomplished as I’d hoped, but it’s ok. I had alot of quiet, some great conversation and yummy salads, and slept really well. Thanks very much to Mr. and Mrs. H for the excellent accommodations!!
Sunday, February 14, 2010
(Granted, it's a cell phone picture in marginal lighting...but still...)
I’m having a great time watching Jane Austen movies while I work on a variety of little projects. Some you’ll see soon, some are just for me. I’ve slept through the night, no waking little girls to listen for. My blood pressure is better than it’s been for a very long time, I’m sure.
Happy Valentine’s Day!
Friday, February 12, 2010
The original plan was to have Kinlee’s birthday party this weekend, tomorrow, and to have a nice Valentine’s with the girls and M, probably doing something just the two of us, Gazelle-style, of course.
Then M had the chance for a gaming weekend. So 3 guys will be arriving at my house in the next couple hours from C-U. They will eat often (constantly), be awake when people should be sleeping, and they will sleep when most are awake. They will talk of tapping and attacking and creatures and lands. They may even create some characters and and deal with a campaign. Who knows. The options are endless.
I can’t even talk like this in jest without feeling like a geek.
M’s the only one married, maybe the only one “attached,” unless something has happened very recently. I mean, come on, would any OTHER girl allow this to happen on Valentine’s Day? I think not.
So what am I doing?
Not staying there to watch and roll my eyes and have full sole responsibility for the girls 24/7 for 3 days of a long weekend. Nope, I dropped the girls with my mom today and I have retreated to an undisclosed luxury suite. Dear friends who have known me all my life, and my parents since college, have offered to share their wonderful downstairs—a space the size of my whole house—so that I can sleep, read, blog, organize pictures, and do a few little projects I’ve been putting off forever. As an added bonus, I get to visit with some awfully neat people.
So here I sit, in a comfy recliner, laptop ready to go, Olympics tuned in, and not a soul to need me right now. Maybe it’s selfish, but I think it’s more helpful to those around me than they might know.
Some moms don’t seem to need breaks. I’m amazed by that. I am not one of those. Though this isn’t my ideal Valentine’s Day, I think I’m going to enjoy the weekend.
And Honey, stretch before all that tap and untap. You don’t need another sprain.
Your IRL Akroma.
What are YOU doing for Valentine’s Day? Do tell… celebrate it or hate it? Seems that most people fall into one of those two categories, eh? (Sorry…the Canadian influence of the Olympics is getting to me already.)
Thursday, February 11, 2010
No? Well then, we should all be going here to vote for Buddy Cruise, Inc. and this chance at a new documentary about people with Down syndrome. Wouldn’t it be nice to have a new 30-minute film out there showing it like it is now, with personal stories, instead of all the old info that so many of us have received in our time in this “club”?
It’s super simple, go over, vote for the Good Idea—yes it takes a log in, but it’s not asking for personal info or anything—and let’s help them get in the top 10!
Thanks to Michelle for her Tweet about this!
(Thanks to Courtney for the great tip... if you're on Facebook, you don't have to create an account! Go all you FB addicts!)
I’ve blogged about Reece’s Rainbow often. (Though not recently, I realize now. Bad me!) But there is now a new venture called Connecting the Rainbow that is working with families who choose to keep their little ones with DS in countries that don’t have any support system for them. The goal, of course, would be a time when there is no need for international adoptions because the parents are keeping their little ones with disabilities and had a good support system in the society to care for them.
Connecting the Rainbow is focusing on Bulgaria right now, and they have a very cool opportunity to help right now. Beyond Play is a therapeutic toy company that has agreed to give 15% of all items purchased from CTR’s wish list back to CTR. It’s a great chance to buy a toy for their cause, or for yourself, and contribute to CTR at the same time. I am so privileged to have come to know via blogs, forums, and email the friends who are making this venture happen, and they are truly wonderful, caring people. These kids are their focus, and educating their families is going to be so very rewarding.
They also have an additional wish list you can check out.
Many of these items are very inexpensive and will be an excellent gift to these families who already trying to go against “the norm” as they choose to raise their kids at home.
Please take time to glance at the items and see if there’s something you could send to Bulgaria for these families. You don’t have to mail it overseas yourself, don’t worry!
Wednesday, February 10, 2010
Even though we are just outside of the Early Intervention system, since Braska turned 3 in November, I still get a lot of contacts and questions about the differences in EI services in different states and even other counties in Missouri. Ria has been communicating with someone about this and posted their conversation on her blog today. It sounds like this mom that Ria has been talking to has been put into the new model for EI that some places are transitioning to. She asked for some input into our experiences.
In St. Louis County, next door to ours, the First Steps Program has been trying out a new parent-centered team approach with new parents and transferring families. From what I learned via word of mouth from a few in the administrative side of the system, St. Louis County agreed to be part of a testing or trial program with this new approach. So far, I’ve not heard many families who are pleased with it, unfortunately.
To contrast the two, let me first summarize our experience: Braska had in-home therapies with First Steps from the time we moved to Missouri when she was 18 months old. She had weekly speech therapy (ST), occupational/feeding therapy (OT), physical therapy (PT), and she also was seen by a nutritionist/feeding specialist due to her G-tube and difficulty gaining weight. We made some adjustments to these over the past couple years and changed OT to every other week for a while, slowed ST to every other week for her last 6 months in EI since she was so self-motivated and ahead of the curve in her speech skills, we had PT at Braska’s school for a while, and we changed the schedule for the nutritionist as well. But even in all this, we still had each provider of their particular specialty coming to treat Braska hands-on.
When Braska turned 2, she went to what I called “pre-preschool” for two hours each Monday. The teacher was a developmental therapist (DT) and it was a great experience. Braska loved it, she learned a lot, and I firmly believe it helped her with the transition to preschool when she turned 3. This was an added benefit to the home-based therapies, but I wouldn’t want to have it be the only thing. I wouldn’t have wanted a group setting with one therapist to be her only treatment each week. In some cases, I’m told that’s happening.
The guru for what is called the “team approach” around here is Robin McWilliam, Ph.D. (He has a blog here if you’re interested.) He’s widely known in the field of EI for promoting what he calls a PSP or primary service provider model. My paraphrase of the model, combining what I’ve read and what I’ve heard from parents who have been in it, goes like this… There is a team of providers—PT, OT, DT, ST, etc.—who meet regularly to discuss little Suzy. They are all involved in working on her IFSP goals and they are all familiar with her. BUT not all of them have met her, and in many cases they may not.
The feature of this model, also called the transdisciplinary model, is that there is one person identified as the “primary service provider (PSP)” and that person is who sees Suzy in the home regularly. That person conveys all the instructions and thoughts or concerns from the team. The PSP is usually the therapist who deals with the child’s most delayed area, as far as I can tell. For instance, if Suzy is 2 and she walks well and eats well and can scribble, but she doesn’t use words yet, she will probably have the ST be her PSP. What that means is that the ST will come to the house weekly or biweekly and work with Suzy, but she will not only do ST but will also address concerns in PT or OT areas also. The PSP will research and discuss with the other team members issues that come up and she will then report back to the parent. But all concerns about any modality will go through the PSP—the ST in this scenario.
To me, it’s clear why this approach is frustrating for a parent. What if my child has two areas that are in great need of work? What kind of delay in answers must come when a parent must ask an ST about the inversion of her child’s ankles and wait for the ST to talk to the PT and then get back to the parent? Wouldn’t it always be wiser for the provider who is offering the advice to be the one actually seeing and working with the child? From what I’ve been told, parents receive a lot of handouts and information for where to research and find their own answers for issues that might come up. This is better than nothing, maybe, but it still pales in comparison to the idea of a person, trained in THAT field, observing the child and discussing the plan with you.
I’m told by those who know these things that being in this trial group is not mandatory in St. Louis County, though they don’t tell you that, and that you can opt out of this team approach. But last I heard, they were putting 1 out of 4 new families, either by birth or by transfer, into the new model. And there have been quite a few unhappy families.
We’re just one county over, and we did not participate in this model. I’m thankful for that, though I’m told that all of Missouri may end up going this route soon if some people in high places have their way. We’ll have to see. I hope that’s not the case.
I can’t imagine having to deal with one person about all our issues…G-tube, no/limited oral feeding, not walking, and very delayed fine motor. I can’t imagine the strain on any therapist who would have been put in the position of our PSP. I can tell you that I wouldn’t have been fun to be around much after about a week in that system. It just doesn’t seem like the best interest of the child is in the forefront in this system. Maybe some like it, maybe some have had success, but for a child with multiple delays and challenges, it just doesn’t seem to make sense.
Have you had experience with this new approach? Thoughts?
Monday, February 8, 2010
Sunday, February 7, 2010
Yesterday in doing the usually time-wasting routine of blog hopping and clicking names of people I don’t know on others’ blogs to check out their blogs, and so on, I found a post that struck me.
It’s not a debate about abortion, it’s addressing those of us who believe killing a child both before and after birth is wrong. It’s challenging us, we who use that “pro-life” term. And I think it even hits on many of those I know who still prefer the “pro-choice” term, though only by a thread are they over that boundary line.
Here are some blips from the post… (I highly recommend reading the whole post.)
The author quotes C Everett Koop, the former surgeon general of the US, saying she sees being prolife as meaning that you “do things to give a person all the life to which he or she is entitled.” This means not just those who live in our home, but also orphans who live nearby or around the world.
She asks this question…
“Why are so few Christian families adopting orphans? Is it just that they are blissfully unaware that there are languishing children out there desperate for a loving home? If so, news flash friends... there is a child waiting for you.”
Then she addresses an excellent point that I’ve never quite considered…
Here are two very good reasons why you might not want to go rescue them; You do not have enough money or space for a(nother) child and You couldn’t handle a (special needs) child. Did you know those are the two biggest abortion reasons? Not enough resources and can’t handle a child. You don’t accept those excuses from pregnant women...
And she references a difficult and convicting verse from Proverbs…
“Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12
This topic was also addressed similarly, but differently, by Melanie at The 30 day journey…For hope in a post in December. This idea that those of us who claim to be Christians, Christ-followers, believers, or whatever your preferred term is… that we are responsible to put our actions where our mouths are. Melanie said it like this…
Will God call you to lead a Bible Study while He calls others to adopt orphans? No. As long as there are orphans in the world, we are ALL called, because these children deserve to have a family and a chance at life; they need to know God loves them. If every Christian family in the United States adopted only one orphan, we wouldn't have an orphan crisis around the world, and many Christian families have room for one more child in their homes. I firmly believe EVERY believer is called to care for orphans unless you are aged out of the system, are financially limited or have a physical condition that prohibits you from adopting.....and in those cases, you can still help raise money to assist others in adoption.
You might not agree, and that’s your option, of course. But regardless of your degree of agreement, I think it’s cause to really think. It sure makes me think.
Saturday, February 6, 2010
Thursday, February 4, 2010
In the past several years, I've owned a business that had to be dealt with in complicated ways. At least they were complicated to me, as I muddled through the process each April. We have written checks, large checks, to the IRS for several years. Tax refund?!? People still get those? We couldn't imagine that. With self-employment tax and all the fun that goes with contract employees and home offices... well, it was always a stressful several days to get them done and ready to file. I always thought I'd "have someone" do them, but it would have taken as much work to prepare things to take to someone, so I just stumbled through somehow.
But this year...no business, no moving expenses, no houses bought or sold. Only an additional kid. And that seems to work in our favor! We will have a refund for the first time in many years, and there's a plan for it. Vacation? New car? Home improvements? Nope...though I'd like to discuss that last one, actually. The refund will go to one of a few possible places, but spend it, no way. Not with Mr. Gazelle at the helm. And that's ok with me. We didn't know we were getting it, and though we could sure have some fun with it, saving or sharing are great options.
Best part is that it's done. In one evening. Not a bad deal. The simple life has it's perks afterall.
Wednesday, February 3, 2010
(Taken from Bethany’s blog.)
She is an orphan living in a baby home in St. Petersburg, Russia. The exact same city from which (Bethany’s daughter) Nika came.
Lera needs a family ... like, yesterday. She had a family committed to adopt her, but that fell through and now she needs another family.
But time is not on her side. At age four, orphans are typically transferred out of baby homes. Lera is 4 1/2 years old ... and by the grace of God, she is still at the baby home.
She has an $8,605 grant in her name through Reece's Rainbow. This is a HUGE start for any adoptive family. She also has another $2,000 that was raised for her by the first family that planned to adopt her -- they want to give that money to her new family.
Could you be her family?
Lera has Down syndrome. She is reported to be very high functioning and by the looks of her dolly, she is engaged in pretend play. She is reported to have a heart murmur, but no other health concerns.
So ... what do you say? Could you be her family?
For more information, please email Andrea at Reece's Rainbow. Please?!
Tuesday, February 2, 2010
Ok. Don’t tell anyone.
(looking over both shoulders)
As of today, we are not sick. Everyone is well, as far as we can tell, anyway. Braska went back to school today. It was nice for her to go, but I find myself counting the days to see how long it will take her to catch the next bug. We’ll see…
The diet is still going well. No faltering days yet. I’m at about 14 lbs for the current loss total. Obviously it’s slowed down, as is to be expected, but I’m going to hopefully be able to get back to my workout, or at least the treadmill, this week since I’ve missed some when I was sick and treating the sick.
Super Bowl Sunday is my first “day off” and I’m trying to figure out what kinds of things to take to snack on. Veggies are a clear choice, sans dip. Maybe baked chips? Thoughts? Anyone know some yummy but not too dangerous snacks so I’m not tempted to hit the really bad and very yummy stuff that will surely be there?
I’m hoping this will be a pretty uneventful week. I’d welcome that for a little while. Nothing much to write about would be ok with me. Maybe THEN I’d have time to write about the stuff that’s been bouncing around in my head for months… maybe.