Blogging about life and raising our five kids with Down syndrome.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, September 26, 2008

We're here! We're here!

WHEW! We made it! We left about 1:30 Weds, and drove to Portage, Indiana where we stayed the night in what had to be the most disgusting hotel I've ever stayed in. Note to self: Just because it says, "Days Inn" on the sign means NOTHING! Yes, they'll be hearing from me!

Yesterday was a marathon drive. I seem to have a lot of marathons in my life these days. Anyway, we left the hotel at 8:30 a.m. and drove another 800 miles to Tink's place. I only got us a tiny bit lost on the New Jersey turnpike. Just enough that by 10:00 pm my brain was fried, it was raining and pitch dark, and I'd had it. I called Tink's husband and told him where I was, and he came to meet me...just a few minutes from their house! Really it was a HUGE relief not to have to THINK, instead just following the car in front of me!

Angela did AWESOME! She's such a great traveler, really. The last half hour was lots of, "I'm so tired mom. Soooo tired!" But she's like her mom and doesn't want to miss a thing!

Today while Tink is working Angela and I will hopefully be hooking up with friends from the DS community. I can't wait!

Wednesday, September 24, 2008

Almost ready!

Angela woke up at 4:30 this morning, "It's Wednesday! Time to go to New York!" She *really* didn't want to go to school today, preferring to stay home and help me pack, when in reality I needed her to go to school so I could pack. LOL

The last load of laundry just got thrown into the dryer so it's done before I have to leave, and while it's drying I'm going to make a quick Walmart run. The house is NOT picked up but I will try to do a little quick before we get on the road.

Dean is going to have a busy fun time while I'm gone. ;-) Zurri is in heat and will be ready for breeding over the weekend. Roman is back and will require a huge amount of watching so we don't end up with the wrong kind of puppies, and...oh yeah...we'll have an extra dog here..Zurri's boyfriend.

Sunday, September 21, 2008

31 for 21

It's right around the corner! October is Down Syndrome awareness month, and with it comes the 2nd annual "31 for 21" blog challenge. Last year I really had a great time participating, and look forward to doing so again this year! If you'd like to participate, contact Tricia and let her know. Don't forget to grab the code for your button!

GetItDown;31for21

Friday, September 19, 2008

In my spare time

Yesterday I didn't have anything better to do so I decided to teach
one of my dogs to ride in the sidecar. I've worked with 2 of the dogs
already and neither of them are too thrilled with the idea. But
Roman...aahhh Roman my red mini poodle. He's game for anything if it
means he's with Mom, so he was my victim yesterday.

I got him some mini doggles (which are too damn cute!) and a harness,
which I buckled to Angela's harness in the sidecar. He seemed ok with
that, so we took a ride up the street, and he just sat there looking
not at all nervous. Of course I gave him lots of treats while we were
doing this, so that helped!

A few times up the side streets, and as fast as 40 mph and he seemed
just fine, so we headed out onto the highway. That's when he decided
he didn't like the doggles. Actually, he's due to have his face
trimmed and I think he just couldn't see around the stuff in his eyes.

Anyway, I wouldn't say he ENJOYED the ride, but I wouldn't say he was
scared either. Maybe slightly confused about the doggles on his face,
but otherwise he seemed fine. This weekend I plan to work with him on
being in there longer than 10 minutes at a time.

I love the smiles my rig brings to the faces of older men who wish
they had one, and small kids who wish they were riding in it. And it's
pretty clear Angela is the coolest kid in 6th grade!

We're GOING

Angela and I are going to New York!!!! I sooo want Dean to come along, but he can't take any time off work. He's really disappointed that he has to miss it. But...Angela and I are going! Unfortunately it's too late to get decent airfare so we're going to have to drive, but she and I both like road trips, so we'll enjoy the time.

Here's the plan. We'll drive to my friend Tink's house next week. Then on Sunday morning her husband will drop us off at the train. Since I'm clueless about the area, I have a friend who will be meeting us on the train along the way, and she will hold me hand all the way to New York, and then to Central Park where the Buddy Walk is being held.

I can't believe we get to go to New York! Have I mentioned I've never been there and have always wanted to go?

Thursday, September 18, 2008

UGH! This makes me SICK!

This article appeared in the Minneapolis Star Tribune today. "State Facility Impropertly Handcuffed Retarded Residents". Need I say more? Probably not, but I will.

So, residents were handcuffed for things like biting their own hands, bumping into staff or other residents, going outside without a coat, or touching a pizza box. This went on for TWO YEARS! That means some new administrator or other leadership position decided one day that this would be a good way to control the behavior of residents. Who made that person GOD? The fact that the rest of the staff went along with it makes me even more sick. These are the type of people that scare us parents to death. Will THEY be caring for our kids after we're gone?


"When family members and guardians complained or demanded that restraints not be used, the staff threatened retaliation by limiting visiting times and withholding information, the report said."


Please please tell me that administrator is gone!

And training. Where's the training? The article states "Opheim noted that budget cuts in recent years have sharply reduced the amount of resources for staff training at the Extended Treatment Program." Shouldn't that be one of the first things on the list? I mean, you can't care for the residents if you don't know how to care for them! Good grief!!!!

Wednesday, September 17, 2008

HOM furniture: What happened with that?

Someone asked me what happened with our HOM furniture problems. Well, I'll be more than happy to tell you. HOM Furniture stores SUCK!

First, you may remember a year ago in May we bought 2 pieces from HOM. A beautiful entertainment center to the tune of $2600. We picked it out not only because it was very unique, but because we could close and lock all the electronics away, protecting them when Angela gets in a mood and the remotes start flying! We also bought a leather sectional about the same price. Plus $190 for delivery. Because the leather was "custom" dyed, none of the furniture was delivered until August. When they arrived we went out and bought a TV specifically to fit inside this huge unit.

In May of this year I noticed a major defect with the entertainment center. On all the uprights all the laminate was coming unglued. Upon further inspection (looking into the corners with a flashlight because the lighting in that room is horrible.) I found that the stain was flaking off all over the place! Frustrated, I called HOM and told them about the issue, so they sent someone out.

By the time the guy came, we'd also discovered a major problem with the leather sectional as well. The guy agreed the entertainment center needed to be replaced, as did one ene (which equals two pieces) of the sectional.

We went to HOM to pick out a new entertainment center. Remember, we had specifications (has to be able to PROTECT the electronics AND fit the huge tv we bought to put in it!) We couldn't find one single thing in the store to fit the bill. Not only that, but we found the display model of our entertainment unit, and guess what? It had the SAME defects, only someone had tried to fix them.

We finally called customer service and told them we wanted our money back on the entertainment center. We couldn't find anything to fit our needs. However THEIR policy was to REPLACE or give store credit, NOT a refund. We explained how we understood that, but they didn't HAVE anything we could USE! We fought with them for an entire month before they agreed to give us a refund..which two months to get to us. Oh, not only that, but they charged us $195 to pick up the THEIR defective piece of furniture!

As for the leather sectional, we're STILL WAITING for our replacement pieces. They were ordered the end of May, and we were told they'd be here the first week of September. Let's see....today is the 17th.

We have yet to find an entertainment center that suits our needs. All the stores (Schneidermans, Becker, Ashley, etc.) stock from the same catalogs, and it's all crap. We've decided in order to find what we want, we'll have to find some Amish guy to build us a QUALITY piece of furniture!

Monday, September 15, 2008

Now THAT was a first!

Whenever I have the sidecar out, it ALWAYS gets a lot of looks! It's very common for me to come out of a store to find some guy drooling all over my bike. How could they not? It's SO COOL!

Once, while loading a couple bags into the tub, I noticed a man on the opposite side of the parking lot (about 100 yards away) stop in his track and watch me. I finished what I was doing and looked again, and he was still standing there, car door 1/2 open, just watching. I could practically SEE the drool from where I was. I waved, and hollered for him to "C'mon over and take a look!" He spent about 1/2 hour "looking" at Nooner and Spank and talking sidecars with me. I bet he bought one the next day. LOL

A couple weeks ago Dean and I were out on our bikes and stopped at the drug store. As we were pulling out, I noticed a guy who was just throwing his leg over his own bike, STOP with his leg in mid-air to look at my bike. It was dark, and I was in the middle of the lot, waiting for Dean to back out when the guy came walking over to talk to us. I think we sat there a good 15 minutes answering his questions about my way cool ride.

But today, yes today was a first. At least to my knowledge! I took Angela to her Dr. appt, and on the way home, as we came up to a red light, we pulled behind another car into the left turn lane. To my right, I noticed the car next to us didn't pull all the way up to the line. I turned my head to look, just in time to see Angela waving at the guy as he snapped a picture of us!!! I smiled back, then said, "Hey! That's 5 bucks!" (I was half serious! LOL)

I have to admit that I love the attention. Mostly it causes Angela to be a mini celebrity wherever we go. As she climbs out of the sidecar people are amazed to not only see this lovely young lady, but as she takes off her helmet they're even more surprised to see she has Down Syndrome. (Like..if she has DS she wouldn't be capable of sitting in that thing????) But whatever it is that fascinates them, it causes them to TALK to her. It gives her something to talk about with THEM, and causes smiles all around. It's given her typical peers at school something to be envious of. They are GREEN with envy, and I love every second of it. After all, there are lots of things in THEIR lives that they get to do that she just isn't physically able to do. But riding in a sidecar? How many kids get to do THAT?

So I'm thinking somewhere on a MN blog is a picture of my sidecar taken by some guy sitting at a stoplight. LOL

Sunday, September 14, 2008

Update

So, Friday we went back to the ped. (not her regular one, who was at a conference.) Her fever was gone, and she was talkative (vs. falling asleep in the middle of a sentences and on the xray table the day before!) The doctor decided not to repeat the blood work since she was improving.

Friday night her regular ped. called to say her urine cultured high levels of E-coli, which isn't unusual for her. So clearly a UTI, but according to the doctor "Not a typical presentation of UTI, but then again, this IS Angela we're talking about!"

By that time Angela was already at her dad's for the weekend. I didn't hear from him all weekend and figured no news is good news.

He brought her home tonight, and she was very chatty and talkative,and no fever, but her color is horrible. He said last night she went to bed at 5:00 and didn't wake up till 10:00 this morning. After she came home she was in bed for the night at 7:00.

If it's nice out tomorrow I'll be bringing her back to the doctor. I say if it's nice, because when we got home my Tahoe won't start and so my only vehicle is the sidecar. Lovely.

Thursday, September 11, 2008

Update

Update: Ok, temp was 102 point something. She is temder around her hip/upper abdomen, but difficult for the dr. to isolate EXACTLY where. She's walking fine on it though. We did a hip xray, and pelvic xray...both fine, although they did see alot of stool in her colon, but not enough or in the right area to warrant the tenderness. We put her on ducolax to clean her out.

Because of her history of UTI's, we did a Urinalysis, and while it had a elevated white count to indicate a slight infection, not enough to warrant the high fever. (and also, Angela doesn't usually run fevers with UTI's, but hey...ya just never know.) Nor the tenderness. We put her on an antibiotic for that. She is NOT tender around her ovaries or appendix (I have this vague memory that she doesn't HAVE an appendix, but I don't remember why I know this. It's possible it was one of my other kids, or that I dreamed it. Although, two of her brothers had theirs out. Who knows???)

Her CBC was only slightly skewed. Of course, the only number I remember was her White count was 8,000, which is within normal ranges. Her platelet count was on the low end of normal. Can't remember what the exact number was...

Anyway, her regular doctor is in a conference today and tomorrow (naturally) but the dr. we saw called her anyway. She said to start the anti's tonight, and come back tomorrow morning and repeat the blood work, and that we may have to repeat it again on Monday.

So that's what I know....tomorrow I'll write down all the numbers so I can remember it once I've walked out the door of the dr's office!

Trying not to freak out

I've already talk to Ann,(my good friend who's 5 year old son John just finished 3 years of chemo for ALL) who tried her best to calm my fears. But, I'm still freaking out, and with each additional phone call I make, or keyword search on Google, I get a little more freaked out.

A few days ago Angela started complaining about her hip. She was holding the area at the top of the hip bone, and grinding her teeth. She was crying REAL tears (very unlike her to EVER cry, even during blood draws and stuff) and woke up several times during the night crying in pain. There was no bruising, and she's bearing weight on it just fine. The next morning she seemed ok.

Yesterday she went to school and was fine. However, she came home, went for a short walk with me when she said, "I wanna go home get a drink, and take a nap."

yes....Angela asked to take a nap.

We came home, at without eating dinner, at 5:00, she got herself into her PJ's and went to bed for the night. I woke her up at 9:30 so she could watch herself on TV (another post....sorry).

This morning, after 14 hours of sleep, I DRAGGED her out of bed for school. Once awake she was fine, ate breakfast and went to school. However, they called me at 11:30 (she comes home at 12:30) to say she was begging to go to bed, and complaining about her hip.

At this very moment she's in my bed, crying hysterically because her hip hurts, and she's got the chills from the fever she's running. She got up to get a drink and could barely hold the glass because of the tremmors. I just went in there to try to calm her down but she doesn't want me to touch her.

I'm taking her in, but because her chart is flagged that she needs extra time, I can't get her in until 2:45. That's an hour and a half away, which with her crying and in pain seems more like 3 days away.

I just got off the phone with Ann again. Poor Ann always gets my phone calls when I'm near hysteria. It doesn't help that we're dealing with other major issues right now with Tyler, and that we're supposed to be out of town this weekend for my parent's 50th anniversary.

An hour and a half.....Angela is no longer crying, and is instead moaning in bed. Still won't let me touch her. I don't want to give her Tylenol as it will mask the fever when we go in.

I'm praying for strep or synovirus or something else that doesn't require this level of freaking out but that all of us do anyway when something like this happens.

My internet connection is sporadic right now. If I can't get online to update I'll call Ann and let her do it. Sorry Ann.

Wednesday, September 10, 2008

WOW!

You remember my twin Tink? On Labor Day her daughter sang the National Anthem at the race track. When you listen to them, her daughter Anna is the harmonizing voice, the one you hear the most, and that hits the high notes. Stuff like this gives me the chills.

Life Support

I put my computer on life support overnight, and was able to revive it. This morning it's functioning on it's own, but I don't know how much time it has. Could be hours, days, or even weeks, it's just hard to tell. Lets just enjoy it while it's here, shall we?

Tuesday, September 09, 2008

Disconnected

Ok, I think my computer is officially trash. About 2 weeks ago, while using Word, that program would shut down in the middle of whatever important project I was working on. (it's always the few times I do something "important" that something happens! This one happened to be my parent's 50th anniversary project!) Then a few days ago it stopped registering that it was connected to the modem, and now won't read the modem at all.

So, if you're trying to reach me via email...forget it. Also, if you're trying to reach me via cell, forget that too! Mine is disconnected for several weeks as I try to scrape together funds for New York.

Right now I'm at the library so I could finish my parent's project for their party this weekend. The library near our house is closed for remodeling so I had to find a different one. What a pita.

Anyway, My posts will be few and far between till I can get things figured out.

On a good note, the house is clean. ;-)

Monday, September 08, 2008

Building and Bowling

We got that darned play set up! The 500 page instruction booklet says, "two skilled craftsmen: Approximately 24 work hours". Ummmm I would not call Dean and I "skilled". We're not dumb, and we can read directions and stuff, but we are not skilled.

Angela's favorite PCA Brett was DYING to help us build this thing. So Saturday morning I picked him up in the sidecar (his first sidecar ride, which he loved...I think.) and we were working by 10:30. We did the very first 2 or 3 steps and had to re-do them a couple of times because boards were the wrong way. This caused some frustration, (and a bad word or two) and to be honest, I was really worried that this project was bigger than us! Once we figured out the quirks of the instruction book though, things went much more smoothly.

At 7:00 I came in the house to make dinner and realized I had totally forgotten a birthday party Angela was supposed to attend, that started at 5:00! It was a hotel pool party until 9:00 so we ran over there. The big pool had been closed due to a toileting accident by a little one, but the small pool with all the great water toys was open and Angela has a BLAST playing in there! And really, and hour and a half was her LIMIT anyway, so it turned out to be a perfect evening.

Sunday morning Brett was here at 7:00 a.m.! That boy is ruthless! He was so excited to see this thing going up that he gave up his only day to sleep in to come help with it. He was able to stay until noon before he had to leave for a family event. He didn't WANT to leave though. He was soooo excited. It didn't seem we had that much further to go. Dean and I took a break for a short rain, and worked until 8:00 pm last night. We got the last of the floorboards on, and the roof. Today while Angela's at school I promised to attach the slide. Then Tuesday Dean and I will finish up by attaching the swingset part that's still in the box.

We did make a modification to the struction, and still aren't sure it will work. We turned the swingset portion so instead of making one long structure it's now "L" shaped. I did remember that my video camera takes still pictures as well, so I took LOTS of them. Now, if only I can figure out how to get them on my computer. I seem to have lost my firewire for uploading from my camera.

Other fun for the weekend. Angela started Special Olympics bowling yesterday. She skipped two years due to her HUGE ventral hernia, but got to okay to bowl this year. We've bowled for fun a few times over the last year though. For Special Olympics, if you bowl with bumpers you can't bowl in the tournaments. In the past, the athletes who needed bumpers could bowl with everyone else, they just couldn't participate in the tournaments. But this year, because we have such a H-U-G-E team and not enough coaches, (really, I think it's too big and needs to be split.) the bumper bowlers can't participate. So...this is Angela's first year without bumpers.

It didn't go so well, and one mom was really annoying me. Her daughter, who is much older and can bowl without much instruction was paired up with Angela. She kept wondering out loud why they paired up the athletes the way they did (I reminded her that this coach is new to the team and doesn't know ALL the kids, so the first week it's inevitable.) and after Angela's 15th gutter ball that got stuck 1/2 way down the isle she asked me, "So at what point do "they" decide a kid should be bowling with bumpers? I said, "Ummm it's really not up to the coaches, but the parents. Angela's at the point where the bumpers aren't helping her learn how to get the ball where it needs to go. You know, if you don't want your daughter bowling with her, how about you talk to the coach instead of me?" She really irritated me. I totally understood her frustration, as her daughter (who seemed fine with it) was having to wait a lot. But at the same time, GOOD GRIEF..have some PATIENCE woman and know IT'S THE FIRST WEEK there is stuff to be ironed out!!!!

Angela was being a great sport, and not getting upset with all the gutter balls, and really by the second game was starting to understand she had to keep her eyes on the pins, and that where her arm (sideways) is where the ball would go. I think she and I will be doing some bowling on our own this week so she can get some more practice in.

Friday, September 05, 2008

Prayer please

Ok... I'm not quite sure what to do. Angela's picture is being shown on the Jumbotron (or whatever that big screen in Times Square is called) on the 28th, and I still don't have the money for airline tickets. We have a place to stay, and a hand-holder to get me from the train to Times Square, but...no money to get there in the first place! UGH! My sister asked how much I'd raised in my first-giving funds. Apparently she (and maybe others?) thought those funds were for the trip. THEY'RE NOT! Those go directly to the National Down Syndrome Society.

All I can do right now is ask people to pray for this. That those funds come in. I mean, it's kind of a big deal for your kid's face to be shown 40 feet tall in the middle of Times Square, right? Something you kinda might wanna be there for!

There is a few thousand dollars that is owed to me. Some of it was paid back in July, but I haven't seen any since. If even $500 were to come in, I could manage the airline tickets.

So that's what I'm praying for this week...money to get to New York.

Call Before You Dig

Ok...I kinda fell off the planet for a couple of days. Well, not really, but it sure FELT like it! You know that whole "Call Before You Dig" thing? Well, we did call, but it was way back in June when we were getting ready to put the new fence in. LOL Anyway, some of the flags were still up in the area we're putting Angela's playset, and we hand dug around those lines. Unfortunately we discovered the hard way that there was a whole BUNDLE of lines (5 individual cables) that were NOT marked, and so they were severed by the bobcat.

It was a long 4 days without ANY services. Just so happened that the timing of this event coincided with my cell phone bill...well....that's a whole other post. (Tink, I'm still dealing with Sprint from the JULY incident!) which left me absolutely 100% disconnected with the world.

The house is clean, every stitch of laundry is done, and life is good. Just in time too, because we got hooked back up yesterday afternoon!

I've started a new, unrelated blog. "Leah's Off The Couch", which is my attempt to do just that...get off the damn couch. Actually I've been doing pretty well, and am now up to walking 3-4 miles several times per week, but this blog is my journey through the Couch to 5K program. Should be interesting!