The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Sunday, February 28, 2010

Past Pics: Pretty

I’m backing up my computer tonight, doing a little overhaul.  I came across a disk that wasn’t labeled.  This was all that was on it. Three pictures.  Braska just before she turned 1.  Priceless.
smiley braska 12-1-07 Braska go bears Braska halloween 10-07

Braska: Happy Heart Day to Me! 3 Years!!

Can you believe it’s been 3 whole years since I had my heart fixed??  That’s right! Today is my Happy Heart Day!

Here’s where you can go back and see the story about all of it if you want to… I have some little friends who will be having their hearts fixed soon, so their mommies sometimes like to see how I did when Dr. F fixed mine.  And Mommy and Daddy like to go back and see how little and cute I was, and what a good girl I was in the hospital, too.

Every year we look at this picture, even though it’s scary sometimes for other people, for me and Mommy and Daddy, it helps us remember how strong I am and how much God has helped me.

And look at me now!!!! 

Tuesday, February 23, 2010

Mommy report: ENT visit

What’s new, you ask??

You might have seen on the Twitter gadget on my blog that we had several things to talk to the ENT about yesterday when Braska saw him.  I took my handy dandy fancy clipboard with my questions ready. 

We addressed her sleep issues, waking frequently, and apneic episodes that have been getting worse lately. 

We’re now waiting for the sleep center to call and schedule her appointment. Depending on what is found, she may be having tonsils and adenoids removed.

We addressed her hearing issues, the fact that she’s been getting lazy with her speech, and seems to show that she’s not hearing as well as she has in the past. 

After the oh-so-fun microscopic exam of her ears, she has fluid again, 4th time in 3 months, and we’ll be scheduling surgery to insert tubes after the results of the sleep study are in.  If we need to do the tonsillectomy, we’ll combine the procedure with her tube placement to avoid anesthesia twice.  Most likely her hearing issues are related to the fluid distorting what used to be clear to her.

We addressed her incessant teeth-grinding, letting him know that it happens when she has ear issues, and it lessens or stops when her ears are clear.

After the typical “kids just grind their teeth,” he did agree that it will likely help to have the fluid situation taken care of via the tube placement.

So that’s where we stand.  We’ll hopefully get the sleep study scheduled in the next few weeks, then after those results are in, we’ll set up the tubes procedure and whatever additional things need to be done at the same time under anesthesia… possibly even dental work that is soon due.

There. You’re up to date. Thanks for asking!

Sunday, February 21, 2010

Possibly a reason to watch NASCAR??

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.

BUT—Kelli posted about this interesting tidbit on her blog, Living Life with E’s. (If you haven’t been to see her, go visit. She’s got some cuties for sure!) From Kelli’s post

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.

DScar1 DScar2 dscar3

Saturday, February 13, 2010

Me ‘n Jack: KiKi’s party

This weekend me and KiKi are at Grammy’s house while Daddy plays games with his friends at our house and Mommy’s getting some quiet time by herself.  So here’s some pictures from last week to hold you over til I get home.

Jack and his mommy and his sister Madelyn came to KiKi’s party.  We had almost the same clothes on, and we didn’t even try to do it!

Thursday, February 11, 2010

Anyone got $50,000?

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!

Connecting the Rainbow

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.


Grab This Button

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

Early Intervention: Parent-centered team

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

Sing along, Take 2

Some of you could see my videos from Saturday, but some couldn't get them to work. So I'll try a different way to show you. Can you see it now??
(Movie clip below for Reader readers...)

(Mommy note: It's not so much "singing" as toddler rapping of sorts, but the fact that she can string several words together on command, and often without any prompting at all...that's exciting for us. And to be fair to Braska, this was late in the evening, and her enunciation always gets a little lazy as she gets tired... but it's still neat to hear!)

Tuesday, February 2, 2010

Lovely Lera


(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?!