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.

Monday, July 28, 2008

End of the therapy saga

Braska's OT and PT have resigned from her team. I think this is really unfortunate, but after hearing from some insiders that I didn't even know I had in my resource pocket (you guys are so sneaky!), it's really for the best all around. They are good therapists and they'll continue to be, but I'm sure we'll find some wonderful new team members.

We've decided to take a break for the month of August since we'll be so busy. We'd actually already debated this, prior to this situation, just due to the chaos of moving and such, so it's fine with me. We'll contine with ST in the meantime. Jocelyn is just a peach of a girl, and Braska actually talked for her a little today!

Thank you to those who had helpful tips and especially to you therapists from near and far who offered a great, supportive perspective. What a great email response!!! I'm glad to know this is an isolated situation. Don't worry... we'll keep showing off our girl's progress and how she gets there!

Sunday, July 27, 2008

The sweetest treat

I'm kind of grouchy. I've had a short fuse and been very blah. Maybe it's a phase of the pregnancy hormone train. If so, I hope this trip is very short! I haven't been posting because I don't like to be negative in a format that remains "for all of time....(echo, echo, echo)." And I am so blessed, that what little comes to frustrate me is really piddly in comparison. So I will simply be quiet...

In the meantime, here's something that I found this morning that made me smile. If you are anywhere near Falmouth, MA, please go buy a treat for me!

Wednesday, July 23, 2008

Hey DS Parents, Therapy session question

Do you guys take pictures of your therapy sessions? Videos? And if so, do any of you post them on your blogs or websites? Do any of your therapy providers have policies regarding that specifically?

I had a situation about this today, which I can't really post about here. I'd like some input. If you're game to help me out, leave me a comment and I'll send you the whole story. For those of you on DownSyn, it's on there too.

Thanks, Team!

Wednesday, July 16, 2008

It's a...

Baby, just one, and it wiggles. That's what we learned today from the MFM specialist, Dr. H. The due date is still iffy, in my opinion, but it'll be the first half of Feb sometime.

I was given all the ins and outs of the screenings and tests available. I explained that I'm not worried about things unless it's something that requires a change in care or delivery plan. We'll do the basic stuff and have plenty of ultrasounds.

The doctor asked what resources I found to be helpful when we got Braska's diagnosis. So I had an opportunity to talk about everything from our local group in Champaign to the blogs and forums that really made the difference for me. I let him know that I always want to be available to any practices that I'm involved in with work or as a patient if they have a situation where I can be of help. This is the office that delivers prenatal diagnoses to women, so I love that he is open to learning how to do it in a more helpful way. I told him of Braska's blog and he asked if he could write it down to share. I had blog cards with me, so I gave him a couple and said I'd be happy to talk to anyone if they ever thought it would be helpful. But often, it's much less intimidating for someone with new fears and questions to be able to simply look through a blog or forum than it is to talk to someone. So I'm so glad that we might be able to help someone get a more realistic view of Down syndrome and put a cute little smiling face with the big bad diagnosis.

Monday, July 14, 2008

Constant battle

Medical insurance issues and authorizations are my thing. It's what I do. It's been at least part of my job for more than 10 years now. I get journals and magazines and do seminars and continuing education in the field.

Even with, and maybe due to, this expertise, I get SO frustrated at how wrong some of the practices we deal with in Braska's care can get what should be a simple process. How in the world do parents do it that don't know how the system works?!? When they get an EOB (the explanation of benefits from the insurance that tells you what they pay and what they won't for a particular visit or service), and it says something is denied, do they just pay it and suffer the economic setback or do they know that there are any of 15 things that could be wrong causing that denial to be incorrect?

I've spent the morning calling our case manager at the insurance--who is little help, unlike the previous ones we've had--getting no pertinent info other than what I was telling HER. I had to tell HER how it should work and what her next step should be. Then I called the therapy location to inform THEM how to bill properly so that they will get paid. Now, mind you, I've done this at LEAST 2 times before for both these entities. I always try to be very nice when I deal with people on the phone that I know I'll be encountering again, so as not to start a bad rapport with them. But this time it was business to the point. Here's why it's denied. Here's what you did wrong. Here's how to fix it. Here's who to contact. Here's what to do next. And then I require them to call me when it's done correctly so I can follow up and make sure.

Sure, I've been a boss in this position for years, and it's not hard for me to take the demanding position, but when it's been in and out their ears with no good result, it's time to make things clear. I can recite diagnosis codes by the hundreds and I can pretty much tell you what things will be covered and what won't for several major insurances. I'm thankful I have this background in our situation, but so many of you don't! How in the world do you do it?!? I'd lose my mind... I'm close already!

Ok, I don't really vent often, but I'm just so tired of doing the work of all these other people who I'm paying to do their job! I'm very thankful for insurance, and I know the system CAN work when people will just pay attention and learn what they need to know. I can't train everyone myself! :o)

Tuesday, July 8, 2008

Doctor Therapists Realtor

I knew this was gonna be a busy week, but today was a little ridiculous.

9 am: Braska pediatrician appt. Just to get established and make sure she had all the right info. It was pouring rain when we left, and I'm no good at kid and rain combinations. We made it barely on time. My first concession of the day was to go out in schlumpadinka fashion. Yep, I've gone there. Capris, neat shoes, and cute top--didn't happen. Yoga pants and T was it. What has happened?!?

10:15 am: Back to the apartment. It's so darn trashed there's not anywhere on the sectional to sit down. But I feel rough, so it's plop in the recliner for me while Braska plays. Dealt with some work and emails but mostly I just sat still and tried not to be dizzy.

11:00 am: Knock at the door. The PT is here. Forgot about that one. I sent an email to find out when my appt was, but didn't get a response. Darn email keeps going to spam. Ok, welcome to disaster central. Braska did great, made some big strides with pulling up to her knees at the couch. But I could hardly keep my eyes open.

12:10 pm: Feed the kid in 3 minutes. (Thank God for tube feedings at times like this.) Rock her for a minute, put her to bed, and collapse into bed myself for a quick nap. But it doesn't happen. I can't nap. I always just race through the things I need to do and what I'm NOT getting done by resting. I get so mad that I can't go to sleep that I end up more agitated every minute. I laid there for about an hour and closed my eyes even though I couldn't sleep. We've got so much to do still today! I need to get some energy!!

1:10 pm: M comes in from work for lunch. I get out of bed. I've made no lunch obviously, so he has a pudding cup and some pretzels. Thank goodness he's not a foodie. We chat a minute. He gets Braska up because speech will be here in a few.

1:30 pm: Jocelyn comes for ST. Braska plays and cooperates some. She's not much for mimicking on command yet. But she had a good time. She likes Miss Jocelyn. M heads back to work at 1:45.

2:30 pm: We leave as Jocelyn does, heading out to the realtor's office. I had texted my sister Rachel to pick me up some food on the way to meet us there since I hadn't had a chance to eat yet. She came along to corral the kiddo while we visited several places.

2:45 pm: We met up with Sandra the realtor. Headed out on our tour of 6 places. We ruled out 3, I'm on the fence about 1, and we like 2. That's not bad overall. Houses in this price range are going quickly here, so a few that we had wanted to see had already sold over the weekend. I was pleased we found a couple standouts at this price point. It was really hard to actually walk through places that we were considering. I love looking at houses. Love it! But we are downsizing, and that's proving to be more of an adjustment than I expected. We loved our 2-car garage, but no more. We loved having 2 baths, but no more. We loved our spread out room for us and guests, but no more. It will be fine. We'll have room to be, but it will be an adjustment for sure. Not to mention the pool....... but it's ok. It really is. It'll be less for me to keep up with, and I like that. I actually was pleasantly surprised, as were Rach and Sandra, at the good places we saw. I was afraid everything would require a great deal of work, but two of the options are just about turn-key. That's important since we're trying to get all this done and moved in by 8/31...the end of our short-term lease in the apartment.

5:15 pm: Back to the realtor's office. We head home. I collapse and hand Braska to M. The local DSA meeting is in 45 minutes, but nope...just can't do it.

And from that point on, my mind races. I'm replaying every bedroom, bathroom, kitchen, finishes, carpet, neighborhood, etc. I'm betting there won't be much sleep tonight. My brain doesn't have a turn-off switch when I need it. So I pray God will show us "our house" just like he did 4 years ago, clear as day. I gleaned a few little hints today, so maybe more will come. We go back tomorrow night, me and M, so he can take a look at the top 3. My hope is for a clear choice or more rule-outs.

Monday, July 7, 2008

The new same ol'

I've had alot I thought about blogging about, but I can't seem to find 5 minutes of lucidity to compose any thoughts. How you 3-a-day-post-people do it....I'm so clueless.

Braska's got 5 therapy appointments per week now, so that in itself makes for busy. And this week we added an appointment for me today, and an appointment for her with the pediatrician tomorrow. That's alot of places to be in 5 days. Oh, and we're also going to look at houses tomorrow night, but it's very preliminary.

This weekend we spent 3 days in South County with the fam, I'm thinking we need a vacation home there already. Am I glad the drive is only 40 mins? Yes!! Do I kind of wish for weekends like this it was 10? Yuppers. I'm so darn exhausted. We had a great 4th hanging out at Cindy's place by the pool. Then Saturday Cheryl had a graduation party and we hung out some with Jerry and Nadine, relatives from Iowa, who were in town. Sunday it was back down for church and lunch before Jerry and Nadine took off, then hangtime at the parents for the afternoon. This coming weekend my brother-in-law is getting married, so we're headed south again, but they're worth it.

We had to find another place for Belle to go. She offended her host, so we found another willing party to take her. Thank you Nancy!!!!!!! I think she'll be very happy. I just want her to be happy, but I'm sure she is confused, and that's sad to me.

For those of you who like preg updates... I'm feeling icky and un-good, but nothing like the bad most of you probably deal with. Just a constant not-good that lets up for a few hours in the middle of the day. It sure makes normal things more difficult. I'm having some sleep issues, but I think they're related to exterior influences, not the tummy baby. I went to the OB today, very nice doc. She is sending me to an MFM (maternal fetal medicine specialist) next week for an ultrasound to determine when this baby's gonna get here. And of course, I'm high risk, ya know. Will be 35 when I deliver, history of baby with chromosomal issues and heart defect.... and some other stuff. High risk. Watch out! I agreed to go because I don't mind ultrasounds, but I made clear that I'm not interested in the invasive testing... what? we may have a kid with a chromosomal abnormality? No! Say it ain't so! Yeah, that would be the easy option, we've decided. We KNOW how to do THAT! It's them regular kids we don't know what to do with.

Alright, enough of this stream of consciousness blogging. Dangerous, it is. And I don't cotton to such things. Time to try to sleep again.