Wednesday, March 31, 2010

Not a spring chicken after all

This was mid morning.  She was pretty chill and quiet this morning, but smiles were there.  (Note the shirt…spring chicken…funny.  Thanks Amy and/or Jen!)


This is about 5:30p. 


She stayed there for a while, then sat up, scooted over a little, and…

Something’s not right.  She has a fever of 100.5, which is quite significant for her generally cool normal temp. 

My issue: She is on day 4 of her Omnicef, Zyrtec, Singulair, and Nasonex combo.  She has been very obstinate and difficult at school this week—though she was a little better today, according to report.  She’s only going half-days (90 mins) at school this week, on advice from the doc to give her more rest and time to strengthen from all this illness. Her congestion is better, though she’s still pretty snotty.  It’s been nice to have her sleeping better, breathing quietly while sleeping, and I’m pleased with that improvement.  So until the fever today, I was a fan of the new regimen.  And I have no hard evidence that any medicine is causing her personality changes.  But I don’t like unknowns.

Could it be that she’s just 3, as far as her behavior?  Sure.  But combined with the other issues, who knows. 

Oh, and she has not wanted to walk tonight, while she’s had her fever.  She won’t hardly sit up, and will NOT stand or walk.  She’s been loving walking, since she’s progressed so well, and has been spending more time on her feet.  Then yesterday at school, and before school even, she wasn’t wanting to walk.  She did do ok at school, bearing weight some, but she was throwing things and yelling her protests, not cooperating, all very unlike her.

Once again, no answers, but something in my gut feels like something’s just not right.  I’m about ready to have some blood work run, just to make sure nothing odd shows up.  I called the dr tonight that we saw on Saturday, so we’ll see if she calls me back. I told them it wasn’t urgent, so it might be tomorrow.  Hopefully she’ll perk up soon.

Thoughts or ideas anyone?

Tuesday, March 30, 2010

html+css=Fun! (Subtitle: geek wannabe)

I’ve spent far too much time lately on blog designs, learning html code for adding fonts (and downloading TONS of fonts) to various parts of the blogs, changing the html code to create various three column formats, and adding post dividers.  Some of these fun new things can be seen at Braska’s blog, and the layout changes can be seen at Dashlyn’s blog.  I’m working on several makeovers for other friends, and I’ll link to them when they’re done. It’s really becoming addictive to marry my digiscrapping obsession with learning the html and css coding. 

I could do this for hours a day, and occasionally do if I have a chance, but I’m neglecting other things.  Everything in moderation…  but wow, it’s so fun to see things take shape, and to make the blogs feel like they’re different instead of the cookie cutter Blogger thing.  Not that it’s bad to be basic, but I like to be unique.  I’ve got a long way to go to be anything more than hobby amateur, so I’ll be glad to practice a lot.

Sunday, March 28, 2010

Big news in my world!

Walmart has an Equate verson of Aquaphor!!! Almost 50% less. Woo hoo!!!

(mobile blogging post)

Saturday, March 27, 2010

Scrappin’ Good Times

Here’s the view from my perspective right now.

Julie and I are at a scrapping event put on by the Pujols Family Foundation for moms of kids with DS.  They provided lunch, they gave everyone TONS of stuff (albums, papers, stickers, more papers, more embellishments, and on and on…), and we got some stuff done.  I’ve been working on backgrounds, both the free kind for whoever and those that are commissioned by people for a specific purpose.

I was the only one sitting behind a laptop, doing the digital version of the “real thing.”  They had little mini classes about stamping and scrapping and even digital scrapbooking.  A great event overall, and I’ve been out of the house for almost 5 hours! Woo hoo!

What did you do today?

Friday, March 26, 2010

Danger: Down in front

More drama on the homefront, but this time a bit more painful physically.

Everyone in our family is ok. Just clarifying for those of you who yelled at me last time I saved that til the end.

Braska's nutritionist was due for a visit at 1pm today. I was getting ready and saw her drive in at 1:10 pm or so. I was putting away lunch things and straightening up the living room. The therapists, I've found, often finish their phone calls in the driveway or for some reason don't come to the door right away. So I continued doing the last little pick-up for a few more minutes. I glanced out at the drive to see the truck was there, but I couldn't tell if she was still inside. At that moment, I heard a loud crash against the front storm door. I headed there to open it, and as I turned the door handle, I heard, "Help! Please help!" I flung the door open to see her face down on the porch with her head against the door. The screen was partially up, so I asked her if she was ok (duh! habit, I guess), and she responded with, "No, I don't think so." I ran back through the kitchen, grabbed my phone on the way, out through the garage--where of course the button to the garage door picked NOW to be stubborn--and I got around to where she was. She was still face down, and I was very afraid she had hit her head on the brick ledge right below the doorway.

She said she couldn't move her arm or shoulder, and that she had fallen right on it. She couldn't move over to the side. It was very clear that she was hurt pretty badly, but she was talking some, so I asked if she wanted me to try to help her up or call 911. She said to call, so I did. We live in "the county" since we're about 2 blocks from where the city limits actually stop. So they had to transfer me after I gave my info the first time. Take 2--I gave the 911 operator all the info, and they were on their way. While we waited, she tried to right herself and managed to get turned over at least on her side that wasn't as injured. She is from about 40 minutes away, so she had me call her husband and tell him to call her daughter who lives nearby.

The whole time we're sitting on the little concrete square that is our front porch, talking of how she just missed the sidewalk and stepped in a low spot in the grass between the sidewalk and the porch at the corner. I've done the same thing more than once, going in and coming out. We really do need to do something with it, I guess. Although it's not technically where one should step, people seem to hit that few inches alot.

Kinlee and Braska had jumped down from the chair they were in when I fled from the living room, and they were standing at the door watching things happen 2 feet in front of them. Braska looked less than pleased at things, especially when Miss C would move in a way that pained her. She's so sensitive to people in pain. They were great though, I have to say. They managed to stay out of trouble for the 30 minutes I was outside with her. They both stayed very close to the door the whole time, just taking it in, then sitting down for a minute tickling each other or being goofy, then they'd stand back up and watch, all somber and serious for a minute.

The ambulance arrived. And drove right past the house. But the guy on the passenger side saw us on the porch as they passed, so they went to the corner a couple houses down and turned around. I suppose the huge house numbers on the mailbox post aren't quite big enough. There were three paramedics who came to the rescue. They were very calm and very nice. Not rushed at all, but thorough. They got her up into a sitting position, and after some painful maneuvering, they had her in a very rough sling. Unfortunately, she has bad knees on a good day, and this didn't help that at all. So between the shoulder and the knees, she got to ride the stretcher to the ambulance.

I sure hope that it's nothing lasting as far as damage goes. She kept apologizing for being clumsy and such. Apologizing. She's just too nice. And while she couldn't hardly talk due to the pain, she asked how we liked the sample formula she'd sent us to try with Braska. I said we could talk about that later... seems unimportant at that moment. Her truck is still in the driveway for now. I'm praying all is ok in short order.

Wednesday, March 24, 2010

Sleep Study. Check.

I’m exhausted, but so many of you have been looking for an update… I can’t live with myself if I keep you waiting.  I’m a pleaser. It’s rough sometimes.

Tee hee. I jest.

The study went well, as far as I can tell.  Donna, the tech, was great and said they got what they needed. She doesn’t give results, of course, as the doctors will look it over and give an official report.  BUT she did say that she didn’t notice concerning pauses.  I was surprised because Braska pauses a lot when she sleeps, it’s almost like she’s holding her breath for a few seconds. 

Get this…did you know that for them to be concerned, the pause in breathing needs to be 20 seconds?!?  20 seconds?!? 

That’s a long time, if you ask me.  I’d be freaking before I got to 15 if I was counting.  Of course, if the patient is having dips in the oxygen saturation numbers (desatting), that would also cause concern.  Donna did say that Braska did not have any desatting during the night, so that is great. 

Honestly, at this stage, I’m wondering if the study will show any problem at all.  And though it’s good NOT to have a problem, I would like to have some answers, and if we don’t get them here, I’ll still need to find them.  Oh well, we’ll deal with that when we get there.

Our ENT, who ordered the study, doesn’t have OR time until June 2.  This does NOT make me happy.  They’re working on getting him more time freed up, and I’m hoping they succeed.  For now, we have scheduled surgery for June 2 tentatively.  We just wanted to get on the books so we don’t have to wait longer, and in the meantime, we’ll wait for the results, the doctor or nurse will call, and we’ll decide at that point exactly what is going to be done at the procedure—just tubes, or tubes along with tonsils and adenoids, or leave the tonsils and lose the adenoids and add the tubes.

We’re in a waiting game for now. 

I expressed clearly how much school she is missing, how I do NOT want to wait til June to take care of this.  There’s not too much that can be done, but I’m going to stay on top of it just in case.

The good news is that she did great with the sleep study. She was a true gem.  Donna said she was the best patient she’s had in a year, and that includes kids up to age 12. So that makes me proud.  I can’t believe she tolerated all that stuff and slept.  Granted, she was up several times, as is her norm, but that’s good too so that they could get a true picture. 

I’m glad it’s over. And I’m thankful that we were able to do it.  Now to try to be patient for the results and next steps.

Tuesday, March 23, 2010

Closing the day on a good note

Wow, what a long day.  It began with so much frustration, but we survived.  Thankfully, God lets me yell and complain at Him and He still loves me and waits until I calm down to say, once again, “I’ve got it. You don’t have to worry. I’m in control and it’s all going to be ok. No matter what it looks like right now.” 

I believe that. Even when I let myself get distracted. Thank goodness He is patient.

I also want to say thanks to Sara and Tricia for encouragement today via phone.  Sara called and got more than she probably bargained for. And Tricia answered her phone and might have wished she’d have let the machine get it.  Though I’m not much of a phone person generally, it was nice to talk to you guys and learn from your similar experiences. My apologies for all the blah blah blah you had to endure!

Braska and M are at Children’s snoozing away right now.  I took them down and stayed through the prep process.  (There are pics on Braska’s blog if you are so inclined.) I’m heading back there at about 6:00 am.  It went very well, and I was very pleased that she wasn’t nearly as congested and snotty once we were there.  Makes me think again that there’s something in or with the house.  But M thinks I’m just paranoid or on a mission to get rid of this carpet.  And maybe that’s true…but the pattern is sure enough to make me wonder.

I still don’t know what to think about the spot on her tongue except it doesn’t seem to bother her, so I’ll not worry about it.  Thrush just might fit, as so many of you have mentioned.  (Hi to Melissa and Aunt Chris and Uncle Don too! Thanks for the tip!)  I really hope they see what they need to during the study.  The tech was SO wonderful, really nice and so accommodating.  And she was talking geek and Trek with M when I left.  Oh dear.

So tonight I go to bed. Things are ok.  I will survive.  I wish I didn’t get in those super overwhelmed and frustrated valleys, but I’m human and I suppose I’ve still got alot of growing to do.  Thanks for being a sounding board, friends and strangers.  Good night.

To add to the fun—a tongue spot

Wow…that was the most negative post I’ve done in a while. sorry about that, but it’s where I am sometimes lately. So very frustrated. It comes and goes. I usually try to hide it because it’s not pretty, but I’m too worn out to sugar-coat today.

Because we didn’t have enough fun things to wonder about, I found this on Braska’s tongue this morning.  It’s a fairly large white spot.  It won’t scrape off with a Nuk brush, doesn’t move. 


A close-up for your viewing pleasure.

Ideas?  I’ve already been Googling and perusing my medical resources (my years in medical practices comes in so handy sometimes) but I don’t find much that matches this. It’s not a tonsillolith—the white spots sometimes seen in and around the throat and tonsils.  It’s much larger than a taste bud or two that’s swollen.  So I’m not sure. 

Related to the upper respiratory issues?  Who knows…

Invention possibility??

Snot diaper. Mucus catcher. Goo grabber. Something to attach to the face to save the multiple boxes of tissue we’re going through.

I don’t know what I’d call it, but I am losing my mind at the constant snot coming out of Braska’s face. It is literally nonstop, and it’s coming out her eyes too. That is BEYOND gross. It’s not like the pink eye goo, but just like thick snot showing up in her eye corners every 10 minutes.

What in the world?!?

I can’t tell you how frustrated I am at this constant sickness/snot. It’s actually making me angry. I’m tired of the piles of used tissues everywhere because we can’t have enough trash cans around to hold them. I’m tired of the shiny streaks of junk on the couches, chairs, every piece of clothing, and carpeting. Just the sound of the snot bubbles is making me want to throw things. It’s so maddening.

Clearly, there are people who are dealing with more. I get that. I know this isn’t truly the end of the world. But for 4 solid months I’ve been totally unable to do anything about this mess of a little girl and all the mini-messes she leaves everywhere. The teeth-grinding is making me crazy. I’ve had to put her in other parts of the house in order not to start pulling my hair out. I am past the sanity line.

It’s not my thing to share my weaknesses, but I’m failing miserably at getting through this gracefully. I can’t stand when I feel out of control like this, and it makes me so angry. Angry is a word that’s useful alot lately, and even THAT makes me angry. I’ve been in tears, I’ve yelled, I’ve slammed car doors and just walked out of the house a few times to breathe deeply without hearing the incessant grinding and gurgly inhaling. It doesn’t help that I’ve been sick too, that Kinlee is more than her normal grouchy self thanks to teething molars, or that M is generally less than hands-on helpful. ( In fairness, if I ask, he will usually pitch in for a moment.)

Tonight is the sleep study for Braska. I’m fearful that they’re going to refuse to do it because she’s so congested, but there’s nothing we can do about that. I’m going to lose it if they won’t do the study. I want those tubes, I want the tonsils and adenoids out.

But mostly I want to figure out WHY all the snot is everywhere and will not quit.

We have no answers. No one knows what’s causing it. I keep hearing that we need to figure that out, but no one has any plan for how to do that. Yesterday we got out of the house for a couple hours and she was less snotty while we were out and about. So is it the house? How do we know? What do we test? How in the heck do we find out what the cause is? Can it be fixed with cleaning? Do we rip out the carpet just to try something?

Tell me how to fix it and I will do anything!!!!!!

Enough griping. There’s more snot to clean up.

Monday, March 22, 2010

Interesting visual on healthcare bill

I wouldn’t even know where to begin to talk about this right now.  No, I’m not celebrating the historic day that was yesterday and this healthcare bill issue. You would have thought Diane Sawyer was announcing Ann Taylor was giving away clothes from the way she was so excited last night.  Disturbing.

Thanks to Kayla for mentioning this on a board.  It’s from here if you want the interactive version.  You can click to make the picture larger if you just want to get a better peek at the image.

image

I’m not into predicting, and I’m not asking for any defense of either side of this debate, really, but I feel sure when people work this hard to pass something that doesn’t even pertain to them personally, the rest of us should sit up and take notice.  At the very least, if the legislators are going to put this through, they should have no choice but to have to live with it as well…all the way to Mr. Yes You Can himself. 

I can just see him toasting last night to the chants, “Yes you can!” as he thinks, “Yes YOU can, but thank goodness I don’t have to.” 

Ok, so I guess I did have something to say.

Oral motor: Day 1 success

Oh.my.gravy. (Yes. We actually say that in my house)

Braska just tolerated IN-MOUTH oral motor therapy for the first time in two years. I'm blown away!

(mobile blogging post)

BrocChick Journey: Milestone


Photobucket


 
And a whole bunch to go... but celebrate the small victories, right?!?

Today marks the end of 9 weeks. The goal this week is to get more exercise in the schedule...if it's a 530am trek downstairs to the treadmill, then so be it. Maybe nap time, maybe at night. But I've got to step up the exercise. With 2 poorly sleeping girls, a sleep study, no school due to sickness, and a generally poor mood on my part for a variety of reasons...it's going to be a tough week.

Friday, March 19, 2010

Return of the family of 4

KiKi came home from Grammy’s today.  She didn’t want to have anything to do with me.  She was giddy to see her sister, and they wrestled and hugged and giggled like crazy. But when given the option, she returned to Auntie Julia, her new best pal.  After Grammy and Auntie Julia left, Kinlee wouldn’t even come to me to get up from her nap.  She stayed in bed almost 40 minutes just waiting for someone ELSE to offer her a way out.

Tonight she warmed up some as she walked all over the living room.  Little crazy girl.  Fall down, get up, walk walk walk… fall down, get up, walk walk walk…  I was tired just watching.  And Braska didn’t even attempt to keep up. 

The flip-flop has happened, as far as gross motor is concerned. Kinlee has passed Braska right by.  So far, no one seems to mind at all.

Privileged to pray for Toby

Reece’s Rainbow has a great program, Prayer Warriors, which matches a volunteer to a child, so that someone specifically is praying for that child every day until they find a home. I’ve known about this for some time, but I keep forgetting to get with it and ask for a child to be assigned to me.

So this week I did, and yesterday in the mail I received news of my new “project.”

toby-PW-button

Meet Toby. One truly adorable little guy. He’s about 5 months old, living in Eastern Europe in an orphanage. His birthday is only 5 days after mine! Is he just precious or what?!?

So every day I will be praying for little Toby, that he finds a family, and that he is safe and loved until that time. And I have a picture on my fridge to remind me, besides just showing me how cute he is.

I’m also praying for and trying to raise money for Zoe still.

Though I can’t physically bring one of these little ones home, I can definitely take a few minutes out of my day to plead with God on their behalf. Do you have a few minutes to spend to change a child’s life as well? Let Charissa at Reece’s Rainbow know, and she’ll be happy to send you information about your little special prayer buddy.

Some can adopt, many can give, but we ALL can pray.

Thursday, March 18, 2010

The impatient shall be made to wait

After my visit with the doctor today, I've got no new plan. He says wait. He says it will get better. He says I must give it time. It's been 8 days now. I feel like that's plenty of time.

The ear is just plain driving me nuts, but I'll survive. If it's not better by Monday, I'll be perched on his doorstep again insisting on a more definitive plan. There's got to be some way to get this fluid out of my ear...

And he says the ear issue is causing the throat pain...drainage down the back of my throat.

Lovely.

KiKi comes home tomorrow, Braska's on the mend, though slowly. I've got a lot to get done this weekend. We'll see if I have the energy to get it all accomplished.

For one positive point...BrocChick total: 27 lbs.

From one night to the next

What a difference! Braska slept all night, though she did wake a couple times for just a moment. Or at least she stirred a little bit. But she didn't get up til about 8:20 am, almost 12 hours of sleep. I think that's a first! Granted, she was covered in dried grossness this morning, with her nostrils completely occluded, but she slept. And I slept. And that's awesome! Thank you, God! (And thanks JD, too.)

We're heading back to my doc again this morning. I just don't get how I can be on day 4 of a Z-pack and not be improved. The obvious answer is that it's not the right med for the job. So we'll see... I'm losing my patience, though.

Wednesday, March 17, 2010

Sequestered Sickies

You might have seen the update over here regarding Braska’s strep infection. And Kinlee’s subsequent fever. It’s good times, let me tell ya.

We’ve got a divide-and-conquer plan in place, though, so we’re surviving. Braska’s here with me, while Kinlee is still at Grammy’s house. It seems that we caught KiKi’s at the beginning, so we started the amoxicillin and she’s doing well. M is trying to steer clear of this sickness, so he’s bailed on us and isn’t coming home til we’re germ free, I suppose.

So Braska and I are hanging out, playing a little, trying to nap… ah yes, trying to nap. I would love to get caught up on the house or something, but I still don’t feel very well and I’ve got no energy at all.

Sleep was not something either Braska or I accomplished last night. Unfortunately, I forgot one small thing when we started Braska on the ever-present, bubble-gum-flavored, bright pink amoxicillin suspension liquid yesterday afternoon.

She has a very unpleasant reaction to red dye. Anyone wanna guess what makes bright pink amoxicillin so pretty? I didn’t make the connection til this morning, after I’d given her another dose, because I guess I’m just that out of it.

[Let me interrupt this rambling and most likely far too boring post for most readers to interject an important element… if you have experience with red dye issues, health or behavioral, please do share… please.]

She slept for about 3 hours after I put her to bed, and though it was restless, that’s not all that abnormal. Hence the sleep study this coming Tuesday evening. But she got up at about midnight, and we were almost consistently up until about 7am. We spent some time in the recliner in her room, and she would sleep for about 15 minutes at a time. It would have been better if I was able to sleep in it, too. She couldn’t breathe through her nose, and this kid just almost refuses to breathe through her mouth. She holds her breath a lot, like she’s trying to force her nose to clear and let the air through. But it doesn’t really work that way. For a couple hours I tried to cuddle her in my bed, since M wasn’t in there, we could try to find something that worked. But she would doze for maybe 3-5 minutes and then be thrashing around again.

I’m sure that many times, if not most of the time, she was at least partially asleep for many of the thrashing episodes, but just not resting. She has had several nights of strange waking that’s not really waking. She sometimes sits up, even says something, then collapses again with a snore. A couple times I put her on the changing table to do some saline drops in the nose, she would count the drops like she always does (“1, 2, 3, 4 drops” “other side”), but then she would instantly be quiet, and her breathing maintained the deep rhythm, even though it was labored. Then in 5 seconds, startling again. So weird.

This is what we’ve noticed with the red dye. The excessively restless sleeping pattern, and during the day, she is more obstinate, not playing as well, more busy and more grouchy in general. I can’t find any other common denominator, and after chatting with a few moms who have pinpointed a red dye issue, the experiences are very similar. And remember, since she doesn’t eat willy nilly any food out there, the only time she gets the red dye is in medicines. So it is easier to isolate the situation, I think.

She started coughing--deep, like trying to clear her throat or chest—and kept coughing. From 4:40 am to almost 6 am. It was very disturbing, and I generally don’t get bothered by that kind of thing. But she just couldn’t quit, and I couldn’t do anything about it. There was a point when I thought I was going to have to take her to the ER. She was getting pale, not catching her breath, and just had the worst look on her face. Not fun to watch. It reminded me of her congestive heart failure days of 3 years ago.

No, sir, I don’t care to do all that again.

I finally took her into the bathroom and ran a very hot shower to steam up the room. I pounded on her back as she coughed, and she would move my hand back to her back when I paused. She finally calmed down some, and she asked to get in the bath. So she had an early morning bath. Once she was out and dressed again, we got back in the recliner and she fell asleep about 7am. I was able to put her in her bed, and we both slept about an hour.

After quite a few phone calls to pharmacies and our pediatrician, (And our family medical connections of all kinds sure do come in handy.) we finally got a prescription for amoxicillin capsules that I can open and dissolve for her to replace the pink stuff, dye free. KiKi will use the pink stuff, since she doesn’t seem to have a problem with it.

The bad news for me, beyond all that lack of sleep stuff, is that my sore throat is not going away, and my ear and head congestion is still present and my ear still is hurting and totally full of fluid. I’ll be talking to my doc again tomorrow to see if, with the info about the girls having strep, if he wants to rethink my diagnosis and prescription. He didn’t test me for strep or even talk about it, quite honestly. So who knows. I’m just ready to be done with meds and sick and all of this. I’m ready to be able to hear out of my right ear. I’m ready for my throat to not hurt enough to make me wince every SINGLE time I swallow. I’m ready for my eyes to not be blurry all the time and scary looking. I’m frustrated that we keep getting hit with this stuff. I’m tired of being powerless to keep them from getting the next thing going around. And I’m done hearing that “all kids who go to school get sick.” We’re past that. This is going on 4 months of almost constant illness. That’s just plain ridiculous. If I haven’t said it before, I’ll tell you now. Braska’s going to get an extra week off school next week. Call it “Spring Break: The Do-over.”

I just put Braska down, she’s sleeping well so far, breathing much better tonight, and I’m dashing for the bed while I have the chance. Who knows what the next few hours might bring. I’m praying we snooze all night long.

Mobile blogging-- Testing 123...would i use mobile blogging much?? Who knows. But I'll see if it works and go from there. Anyone do mobile with Blogger?

Monday, March 15, 2010

The eyes have it too

Nice, huh?  This is me right now.  Wanna guess how it feels??

Over the last 10 days, Braska has had pink eye, Kinlee got it, of course, and this is how I woke up today. 

The fun part is that this isn’t the worst of my current health situation.  Wednesday evening I started feeling like it was coming.  You know, when you can tell you’re going to get sick, but it’s just torturing you by coming on nice and slow.  It drives me crazy.  Nothing I can do but wait for it.  Thursday I had a sore throat, not a “normal” one, but way more painful.  It got worse throughout the day.  That night was very un-fun.  Nothing would help the throat. Not ibuprofen, not Tylenol, not Chloraseptic, not cough drops, not gargling salt water, not even straight salt on the throat.  (Yeah, I was ready to try anything.) 

By Friday morning, I was feeling beyond just “under the weather.” I can’t imagine the girls having this.  How miserable they would be and how would they tell me?  My mom was coming by that day already, so I packed up the girls and sent them with her for the weekend. 

It was a very good thing I did.  Not only did I get progressively worse—aches, cold/hot cycle, HORRIBLE throat pain, congestion, ears full of fluid, and sharp ear pain—but M found out that he had to work all weekend, so he wouldn’t have been available to help with the girls. 

I managed to get out for a while Saturday, watching a game while M worked it, keeping about 30 feet from everyone. I literally sat by myself with about 30 seats around me on all sides in the arena.  But I’ve felt worse as the weekend went along.  By this morning, when I woke up with my eyes all matted and gross, after sleeping not very much EVEN though I took Nyquil, I was ready to see the doc.

This morning at 9, I showed up at my doc’s office.  No one was there, he saw me on the spot, and I headed to the pharmacy to get a Z-pack.  He diagnosed me with an “atypical bacterial” infection, and he said he’s seen a few cases last week, so he expects it’s spreading and will be popping up in our area a lot.  He felt like the eye issue was related and wasn’t actually pink eye/conjunctivitis.  So he said just let him know if it got worse. 

I’ve been sleeping today, up a few times to move to the couch for a while.  But my eyes have been getting worse all day.  I got ready to go pick M up from work, and as I was washing my hands in the bathroom, I glanced up at the mirror.  I couldn’t believe my eyes. (ha…kinda funny)  So I called the doc again, thankful that he answered the phone after his hours were technically over.  I made it clear my eyes were much worse and were very uncomfortable. He called in antibiotic drops for me.

So far, I’m not feeling better yet.  I had planned to go get the girls today, but clearly that’s not going to work.  Tomorrow is not looking great at this point, but we’ll see how I feel in the morning.  Thank goodness this is Braska’s spring break week.

I can only tell you that this is miserable.  Really seriously miserable.  I’d give just about anything to get rid of this throat pain.  It just never stops, and swallowing is the worst. 

Sanitize, people.  NO ONE wants this thing, let me tell ya.

Saturday, March 13, 2010

21.3.10: Meet the precious Zoe

In honor of World Down Syndrome Day on March 21, Reece’s Rainbow has a special project this month to help sponsor children for adoption. 
21.3.10
I have chosen little Zoe as my special girl, to spread the news and put her cute little face out there, hoping that someone might want to scoop her up and bring her home. 
zoe-rr Her birthday is just 6 days before Braska’s.   She has just 8 months left in her “baby house” before she will be sent to a mental institution.  Rarely do small children live more than a year in that environment.  I just can’t bear to consider my Braska going to a place where no one would interact with her and she would be left to fend for herself, IF she’s not restrained to her bed.

How I wish I could go and get her, along with several other little ones, or at the very least find families to give them homes.  Yet all that is open for me right now is to tell everyone about the need, and pray that people will open their hearts for little Zoe.  She’s healthy!  She’s walking and eating and active and will blend so well with a new family!

From the Reece’s Rainbow site:
Beautiful blonde hair and a glowing personality. She is healthy, with no heart condition. She is fully functional...walking, active, many words, able to eat and dress with minimal assistance, and an orphanage favorite.

She is facing the institution, please consider adopting Zoe!

More photos available, please inquire.

We have many children waiting in this same orphanage who can be adopted together. Children in this orphanage are not held much past the age of 4, so we need a family quickly.

I’m asking 3 things of you all, every reader…
1. Prayerfully consider if Zoe might be waiting for YOU specifically.  Do you have a place in your family for her?  You may not feel you have much to offer, but is a family not better than an institution for a 4-year-old??

2. Can you give just $21 to Zoe’s fund?  If you are unable to adopt her yourself, can you share this minimal amount with the family who WILL come for her?  There are so many families who desperately want to adopt but simply do not have the finances to do so.  Can you help THEM if you’re not in a position to bring her to your home? You’ll see a Chip-In box in the right margin under Zoe’s button. Donations are tax deductible.

3. Will you post Zoe’s button on your blog or Facebook page, asking others these same questions?  The code for the button is below and in the right margin.Photobucket

Friday, March 12, 2010

Kinlee: Princess of the Year

At least that’s what her shirt says… so we’re going with it.

Wednesday, March 10, 2010

Fighting for feeding

Ok, so it’s not so much a “fight” but it has felt like it a little in the last couple days.  If you didn’t see the post on Braska’s blog about yesterday’s feeding demo (and if you want things to make sense) you might want to start there first.

Today the goal was to talk to the contact at the school and Sue, a superb OTR/L with excellent feeding skills and experience.  She was our OT for about 3 months at the end of the summer, right before Braska’s transition out of EI.  She is wonderful, as a person, with Braska, and at what she knows as a professional.  I wanted Braska to stay with her when starting school, since Sue works there as well as privately, but the school is set up so that each classroom has an OT who works with the kids in that room.  Since Braska wasn’t in one of Sue’s rooms, we went with the OT in the room.

 Let’s just say that has not worked out the best.

There’s a lot that could be said about that, but I’ll leave most of it alone except to mention that this is actually great timing.  I was only becoming aware of some concerns within the last couple weeks, so a change now is great.

Sue didn’t work with Braska on feeding when she was our OT. This was at our request.  At that point we were still under the impression that Braska’s issues were behavioral, for the most part, and so we weren’t doing focused feeding therapy at that point, trying not to “push her.”  Oh what I wish we’d known then…

Anyway, the good news is, for right now it seems we will be able to make the changes needed to get Braska back with Sue and working specifically on feeding.  We’ll be trying to make this work in Braska’s school schedule on the days Sue is there.  But if that doesn’t work, we’ll possibly go early or something like that to work on the oral motor specifically.  And if all else fails, we will see Sue on a private basis outside of school.  In fact, depending on how receptive Braska is and how it goes initially, we may do both if we can handle it financially. 

We have a lot of lost ground to make up.  But I was so encouraged by the fact that Sue wants to work with her and is sure that it’s not “too late.”  Her muscles can be trained and what behavioral habits have been learned are not too deep to relearn correctly.

We will also be developing a plan to includes Braska’s ST, who we really like a lot.  Ann works so well with Braska and Braska responds well to her. This way they will be coming at the oral motor elements from different directions but working on much the same skills, used for different things.

I’m hopeful that things will be righted soon, and I’m glad to know that we do have good people available.  Of course, I’m still frustrated that we were on a wrong path for what seems like such an important part of her young life, but I have to let that go. 

If I could hang out in NICUs and tell parents in our position NOT to take kids off the bottle completely, even if it just means letting them take 5 or 10 cc with the bottle before tube feeding… oh how I wish we’d have had someone to clue us in…  what a different picture we’d have now.  But it doesn’t work that way.  I can only help those who come behind us, and every child is different, but it’s worth sharing our experience so people can make a more informed decision.

Hopefully, over the next few weeks we’ll see some exciting things.  I acknowledged to Sue that we are willing to take the risk of regression in oral intake to get things done right and help Braska to get where she needs to be in the end. In other words, we may have to take some steps back before taking steps forward. We’ve always been hesitant to have specific feeding therapies because Braska would then refuse to eat for days or weeks at a time after something new was presented in therapy.  But now, I fully believe that we need to back up and do this right.  Teach her the right way to use her mouth and tongue and all the parts around them.  We need to help her eat properly and it won’t be such a difficult thing for her.  THEN maybe she will want to eat as it gets less difficult because her oral motor skills are better.  So if we must rely on the G-tube solely for a while, so be it.  She’ll get her nutrition and we’ll start the journey to being rid of the tube eventually. 

A journey I thought we started long ago, but we were following the wrong map.

***As I was proofing this, the school called.  They are willing to check out the options, create a plan, and help us make some changes to get Braska the therapy she needs.  The ball is rolling…I’m so glad for that. 

****Oh my goodness.  As soon as I posted this, the school called back.  They already have discussed with appropriate people and we have a plan in place.  Woo Hoo!!!  Sue will be handling the oral motor part of Braska’s OT (30 mins a week) and the classroom OT will be handling the fine motor part (also 30 mins a week).  I’m pleased with this and I hope that it works out as well as I expect it to! Yay! 

Thank you, God, for presenting and then solving a problem I wasn’t even aware of…and in short order.  Awesome!

Tuesday, March 9, 2010

Kinlee: 13 months, "Baby" on the move

Kinlee's really showing herself to be running straight for toddlerdom. She is signing and "saying" (approximations) lots of things now. She signs daddy, more, please, eat, milk, yes, all done, and dog. She has consistent words/sounds for daddy (da), mommy (mama), belle (bubba), milk (muh), hair (ha), sissy (sisis), no (nah), yes (yah), shoe (shuh) and eat (eah, with a short sound at the end, but no T). Her more word-like words are hat, uh-oh, bye, and hi. When Baby Signing Time is on, she rocks her little "baby" self like crazy, as shown below...

video

She is also doing well with her walking, increasing her steps a few each day, it seems. Today she went 12 or 13 steps at a time, a few separate times. But these are from last night, and she was tired, but still...it shows how much she likes to try again and again.

video

video

She is really loving her increased mobility and manages to get into just about everything she has access too.

Sunday, March 7, 2010

Past Pics: NG days

Love this one.. .back when the tube was an accessory, including it being in a little bow and clipped with the ribbon bow, too.  This was also pre-glasses, as you can see from the non-straight gaze.  Cute little bug…

7/19/07—2 days shy of 8 months old.
image

Saturday, March 6, 2010

New experiences coming right up

(This is a scheduled post…so I’m writing it Friday night, but you won’t see it til Saturday.  That’s because I want to be sure you have time to see this post with the exciting news!)

Tomorrow/today (Saturday) I will be spending the day at our local/regional DS conference.  The DSAGSL puts this on each year.  I’ve never gone, for a variety of reasons.  But this year, thanks to my buddy Adrienne, I ended up on the planning committee along with Julie. Both of us first-timers, and kind of representing the “moms of younger kids” set.  I also was asked to be part of a workshop with a parent panel on the process of doing the first IEP, transitioning from Early Intervention to the school system.  So tomorrow will be a busy day, one that I am expecting to be exhausting in a few ways, but I hope that it will go well for those who come.  I really hope more are in attendance than what it sounds like there will be.  Julie is picking me up at 7 am. Neither of us like to be up and presentable at that hour.  I believe some caffeine will be involved.

Then on Tuesday morning, Braska and I—more Braska than me—will be “the entertainment” (or the lab rat) for a demonstration by Lori Overland, all the way from Connecticut, at a seminar for therapists here.  Braska will be exhibiting her trouble moving food around in her mouth appropriately and her struggle with liquids remaining in the mouth when she tries to take a drink.  I’m really looking forward to this because Lori is a very well regarded expert on oral-motor issues and feeding, and we get an evaluation and recommendations from her for Braska as a “Thank You” for volunteering.  (Worth like $600!)  I’m all for any expert help with feeding!! And I love that we can be a part of helping people learn about issues that a tiny part of an already small population deal with daily. It was really neat how the kiddos who were originally scheduled were unable to attend and we jumped in to fill a need at the last second…just setting this up today!  Can’t wait to see how it goes.  I just hope Braska cooperates with what they need.  I do have to give a bit of case history to the group, so that will make me nervous, but I’ll make it.  It’s been a while since I’ve had to speak to a group of healthcare professionals, but I think I can remember how.

So it’s going to be a busy weekend around here—I already had an event tonight that I helped with at church, conference tomorrow, Father-in-law’s birthday on Sunday, couple appointments on Monday, and oral-motor seminar on Tuesday—I think I’ll have quite a bit of new and helpful information by the time I get to sit down, breathe, and process it all.  I’ll be sure to share.

Friday, March 5, 2010

Exciting news (almost) in our family

Jack’s going to have a little sister!!! Woo hoo!  Julie and Allan have committed to and started the process of adopting little Dasha from Eastern Europe through Reece’s Rainbow!  Her name will be Dashlyn Belle, which I think is SO neat.  This has been on Julie’s heart for some time, and it is now so very neat to see them finally able to move forward!

Grab This Button

Be sure to visit their adoption blog here (put it in your reader, Reader users), grab the button above to add to your blog or your Facebook page, and spread the word that another little one has a Mommy and Daddy on their way to get her soon!  Of course, if you’d like to donate to the costs of bringing her home, they’d more than appreciate that as well.

I’m kind of living my adoption dreams vicariously through my friends, and this family is practically family to us, so I’m really happy for them and can’t wait to get to see this little doll smile and play with my girls as they all gang up on Jack.  She’ll be Braska’s new best girlfriend. Can’t wait!

Congrats Julie and the rest of the fam…and many prayers for a smooth process!

Thursday, March 4, 2010

BrocChick Journey: 6 1/2 weeks

(If you’re just joining us…here’s the backstory.)

I keep wanting to get on here and update, document for later, etc.  But I always have something that is higher on the priority list.  That will probably continue to happen, so I’m going to try to do a quick blurt out of some info and tips that some have asked about.

~I’ve lost 21 lbs so far, and I’m not burnt out yet.  That’s pretty amazing. I’ve made a few tweaks to the deal, but the basic plan is still in place. More on that later.

~The Wii Fit has become a very expensive scale and spreadsheet-keeper to document my progress.  I need to find a time that I can make a workout work.  It’s been frustrating that neither early or late or while the girls are up OR when they’re napping has worked for a variety of reasons.  Most of them are named Kinlee, though.  Julie and I have done a little walking, but we need to do better.  I’d be making more progress if I could kick up my exercise, that’s for sure.

~I’m feeling much better overall, and that’s been the case since about day 5.  It’s not like I bounce off the walls with energy, but I can tell I’m just functioning better in general.

~My new favorite breakfast is an Earthgrains Thin Bun (same as Arnold Sandwich Thins basically) in Multigrain done as french toast via 1 egg white.  The Plan calls for breakfast to be 2 egg whites, 1 cup oatmeal (prepared), and 1 cup milk.  I took Aunt Doris’s advice and first made the egg whites and oats, with a splash of milk, cinnamon, and Splenda into a pancake-ish thing.  It wasn’t bad at all… I did that for a couple weeks, every morning.  But THEN someone gave me these Thin Buns, 4 pkgs of them (I was ecstatic!!) and I got to comparing.  The oats have more calories and more carbs with less fiber than the Thin Buns, so I substitute the Thin Buns and I run them through a mixture of 1 egg white, cinnamon, Splenda, and occasionally a tiny bit of milk whisked in.  It’s the perfect amount of egg coating, cooked up in a pan with spray oil, and the cinnamon and Splenda makes it down right enjoyable.  If I really need something else and I won’t be able to have my apple for morning snack that day, I might put a spoonful of unsweetened applesauce on for a topping.  But not usually.  This also works well with Healthy Life 100% Whole Wheat Bread…those slices are even less calories and carbs.  But the end product is not quite as yummy, in my opinion.

~Broccoli Slaw is another fave of mine lately.  It’s at WalMart and a few other grocery stores around, maybe everywhere. It’s with the bagged lettuce and such.  In a small bag.  It’s just shredded broccoli stalks with a touch of carrot and red cabbage, but it works GREAT as a substitute for a lettuce salad.  I like to put a few little bits of tomato and sometimes a bit of avocado in with the broccoli slaw, add some onion powder, garlic powder, salt and pepper and mix it all up.  It never gets old.  Occasionally I will shred some chicken up in there too…  If you haven’t tried Broccoli Slaw, it’s a great option for a good, filling, crunchy way to get your vegetables with lots of ways to kick it up a little.

~For my meats, I’m still doing mostly chicken breasts, some tilapia, salmon, and rarely turkey.  I keep roasted chicken deli meat in the fridge and if I’m in a hurry…which is often at least during lunch…then I grab a handful of the chicken, roll it in some romaine or spinach leaves and that’s lunch.  Eat on the run, but better than a burger.

~I still often crave a big juicy burger with all the fixin’s and fries.  But I haven’t caved yet.

~I’ve had 3 “free” days so far, planned days off, and even on those days I’m pretty darn careful.  Other than those days, I’ve been right on track, and it hasn’t been bad at all.

~Unfortunately, this isn’t for everyone… Julie’s had a hard time mostly because she’s got a houseful of people eating all the time and she has to be the one fixing for them.  And teenagers, they make it tough.  All they’re candy and pizza and bottomless bellies.  Melanie’s done well, though she doesn’t have much to lose because she has done the work for a few years now and looks great! My hero!  And Jen joined in for a bit, had a little success, too.  (She didn’t need much success to start with…little hottie.)  But I’m amazed that I seem the most unfazed by the whole thing… SO not like me, if I’d have predicted how this would go.  It’s really becoming my new normal.  Whoda thunk it?!?

So there ya go… if you have other questions, toss them out here and I’ll answer them.  It’s doable, people.  Not easy, but totally doable.

Tuesday, March 2, 2010

Phone pics: Crate, barrel, toys, pebbles

I take a lot of pictures on my phone, some video, and it lives there, unless I send it to one of a couple of people who might enjoy it and can receive those messages.  So when I noticed some cute ones tonight, I thought I’d share.

Did some shopping at a local warehouse boutique…also known as Rachel’s storage unit.  I just thought the stacks  of Crate & Barrel boxes (this was only one of at least 3) were too funny.  Wedding presents unopened because they have no place to put them yet.  Next on the checklist for them, buy a house.  BUT I found an entertainment center and got a GREAT deal!
crateandbarrell

I had a whim and acted on it. That’s not always wise in my experience, but we’ll see how this one goes.  I put Kinlee’s bed in Braska’s room and made Kinlee’s room a playroom.  I quickly realized that 9 x10 is not that much space for so many toys, but they are loving it.  A further toy purging is to follow very soon.
playroom

Pretty self explanatory… goofing around with KiKi and self portraits. She thought the shutter sound was pretty funny.
momkiki

I managed to get Kinlee’s hair in a little “sprout” or Pebbles ‘do.  She didn’t mind it nearly as much as I thought she might.  It’s not doing anything but sticking straight up, but it’s kind of silly cute.
kiki1 

kiki2