Lawyer!
2007-10-29 06:31:00
This morning is our appointment with a lawyer about SSI. Yesterday, through the pain, I gathered up a list of all of the girls specialists and therapists and put them in a spread sheet (Yes, Jess...a SPREAD SHEET). I got together my SSI folder, and every possible thing they could need that my poor little brain could think of. Now I hope I got everything...and I hope that they really don't mind me bringing the two monsters...and lastly hope that the nasty hump of my shoulder and K's shiner don't make us too unseemly :P I will be posting later about the meeting and K's shiner (with pictures!!)
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Lawyer and Black Eye
2007-10-29 11:39:00
Let's do this in order. The lawyer...well, it's good news, bad news, bad news.1. Good - She'll take our case. Specifically, she's taking K's. She offered to take Molly's too because I was "so nice" and she could "Tell what a struggle this has been for us." She did explain why she thinks they turned it down and pointed out that, as we have seen, at this stage of the game they aren't too particular about getting up to date info, etc. She said I could do the appeal and come back, or let her take the case now. She's taking it now. We mutually decided to not to Molly's because her case was even more muddy and unsure than K's (yes, K's is muddy because while she has CF...her case isn't "serious" at this point so it's not so cut and dry). 2. Bad - She's predicting that it could, quite possibly, have to go to court...and that over time it will take us 18-24 months to get anything. 18-24 months...and to top that off...3. BAD - I shouldn't get a job. Financially we ar
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, Black
Cutting Corners in Desperation...
2007-11-05 12:35:00
Well, we are attempting to dip into DH's 401K now. If we get approval for the withdrawal, there will be positives and negatives to it. Positive: We can take the car to CarMax and sell it, and have the money to cover the difference. I.E. We don't have to turn it in as a voluntary repo (which we have been considering)Negative: We're taking money out of the 401KPositive: We'll be able to catch up ALL of the bills.NEgative: DH can't make ANY 401K contributions for 6 months after the withdrawal.Positive: We'll be able to fix our one remaining car (it needs breaks, has a bad oil leak, etc.)Negative: Uh...Positive: Christmas will be covered for sure.Positive: HUGE weight off my shoulders, and our finances with the car out of our hair...which means we can, in fact, go through with the SSI appeal.
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, Corners
, Desperation
New Words of the weekend..
2007-11-04 18:48:00
As I said yesterday, it's leaps and bounds in this house. Molly had a bunch of new words this weekend...I'll try to list them all.1. Oh Shoot2. Pretty3. Sure4. Dunno5. Choo ChooI'm sure there were more, but my brain has left me.I'm not sure if it's being in preschool, or she's just having a 'good period'...but I am just amazed by this little girl!! Overnight she's become a totally new person!
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, New Words
Improving by leaps and bounds!
2007-11-03 09:31:00
Last night, for the second time in a week, Molly copied words!! Not to mention the fact that she's starting to converse a little, and become more aware of potty-time (or at least willing to admit it)Last week it was Daddy, and she copied him when he said "Happy". The rest of the night she kept saying it. She hasn't said it since (common for her), but it was still a copied word!During the week I saw her go behind the couch, and you could obviously see her straining a bit. I said, "Are you going potty?" She didn't answer, so I repeated, "Molly? Are you going poopy?" She looked up at me, obviously done and said, "Yeah!! YUCK!" *lol* Again...it wasn't repeated, at least not yet, but it was a joy.Last night we were "talking". She was doing GREAT reading a book and matching objects in it (amazing the heck otu of me)...and I could tell one of the girls filled their diaper. I asked M if it was her and she shook her head vehemently no. I said, "Molly? Are you SURE?" She looke
So I can't go to playdates :(
2007-11-02 14:24:00
Well, after today I've decided I can no longer attend playdates *sigh* Why? Well...let's see.Last month I went to a playdate (finally...I rarely get to with our schedule, etc.)...Molly spent almost the entire 2 hours at my side. Today, same playdate, same situation, except I wasn't there (appointment at the chiro's...check Side Dishes for that info). She PLAYED! With OTHER CHILDREN! (well, one...but still)*headdesk* I want to go and be able to talk to the Mommy's and...and...*sigh* Joy.
The "Funny" Thing...
2007-11-01 10:18:00
The "funny" thing about K's CF. If she hadn't developed a cough last year...we'd still be in the dark. Her lung functions are great (currently), she has some nasty BM's...but not on an overly consistent basis (Not every BM is nasty)...She has FTT...but that could be passed off as either genetics or her hypotonia/inability to chew. And even funnier? Last years cough never became 'pneumonia'...it seemed more like some minor baby asthma to the pulm. A little bit of wheezing...but no rattling in her lungs...nothing like that. A bronchoscope and seven sweat tests later...I'm now terrified for the cold and flu season to arrive. DH and I sit on eggshells worrying over our first real experience of her being SICK with CF. Looking back, she got "sick" a few times last year...but it was always minor fever with a rash. Dr's always dismissed it. Now each little favor has such a bigger impact...and it shouldn't have to be that way...but it is.
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, Thing
Ten things...
2007-11-09 23:14:00
After being in this for only a year, (though it seems so much longer) I have a list of things
I know that I shouldn't. My therapists and doctor's have always loved that I educate myself...so it's not a problem that I do know them...but I still shouldn't...1. Tongue lateralization - what it is and how good my daughter's is.2. Wilbarger Deep Pressure and Proprioceptive Technique (DPPT) - again, what it is and how best to use it.3. How to check my child's muscle tone, determine if it's improving.4. Thirty-plus words in sign (granted, I knew them before because my cousin has Down's...but I have no 'practical' need for them in every day life until Molly)5. Oral Motor Exercises - Not just for toddlers (which is tricky)! I know it for an older child as well (because I needed it!!).6. That the average toddler requires 1300 calories a day. Molly requires about 50% more to keep her at a steady growth (about 1900), and K needs twice that (about 2600).7. The difference between
The fallout
2007-11-09 08:58:00
Of the big-bada-boom of yesterday...K's teeth look (more) crooked, but they do not seem to be loose. Her gums are BRUISED, and you can see some blood between the two front teeth. She doesn't like me looking at it, but it doesn't seem to cause her big pain.We were at the peds office today for M's flu shot so I asked them about it. They said it was the dentists realm...and gave us a number. I called and we were told to watch out for:Signs of infection, pain/swelling, the teeth turning purple (she said if they turn grayish it's normal, bruising of teeth), signs of abscess. So, wait and see as always. M is now miserable because of her 'traumatic' experience of the shot (the doc is becoming a regular traumatic experience for her anymore). But otherwise, the world is back to normal.ETA: Not five minutes after I wrote this K fell...AGAIN. Hit her mouth (two front teeth)...AGAIN. She was kneeling down to pick up something she dropped and lost her balance, hitting her teeth on t
It's Days Like This...
2007-11-08 12:47:00
That I get scared, worried, and sick to my stomach over my girls. I'll be honest to say that I'm not so worried over Molly (most days). She's got her issues, but she's growing and blossoming...and I think that she will be pretty high functioning. Yes, on screaming fit-throwing days, I'm more nervous...but on the average day I'm fine. K is another story. Not only am I constantly paranoid about sickies and such...but her other issues worry me. The way she walks, eats, etc. Yesterday she choked again. I was right there, but she choked. Makes my stomach flop every time. Today, though...just now. It's naptime so I say, "Are we ready for night night?" K, in all of her happy glory says "Nigh nigh!!" and starts walked toward her bedroom. She has one of her (all-too frequent) missteps...but this time fails to catch herself. Crash to the hardwood floor, face first. Cue silent screaming...deep breath...LOUD screaming...high pitched shrieking. I check her lips, no blood...blo
The Best Birthdays
2007-11-08 09:23:00
Over at Crazy Hip Blog Mama's, we were challenged to write about our best birthday's (for a chance to win a free projector rental). For me it was an easy choice. Last years birthday party for the girls was the all-time best for me (M was turning 2, K was turning 1). And it was two birthday parties at that. First, we had a party for the playgroup. It was a smaller party, but Dora themed, for which I made this cake. The girls had a group of a bout 10 kids to play with, while I got to chat with the adults. Dora was playing on the TV the whole time, of course, and immediately after Dora was the Backyardigans (they didn't have the Pablo cake pan yet *lol*)Then came the real party, with our families and friends. It was a big party, tons of people in my tiny house. I made this other cake, my first attempt at a "real" cake with fondant. It was a success...even if I did make the pink the color of bubble gum (so the ribbon looked like bubble gum *G*). Molly was super hesitant about
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Our whole week - cancelled!
2007-11-08 09:15:00
We have cancelled our entire week this week! This is what my week was supposed to look like (the blue indicates rescheduled, red indicates canceled):Monday - M Preschool 12-3:30 Meet DH with K and have lunchTuesday - M Flu Shot 9:10AM K Speech Therapy 1:00Wednesday - M Preschool 12-3:30 Me Chiropractor 11:45 K Pulmonologist 2:30Thursday - K Physical Therapy 12:30 K Speech Therapy 1:30 M Nutritionist 2:00Friday - M Flu Shot 9:10AM (may still be rescheduled)The only thing NOT cancelled due to illness was Molly's preschool on Wednesday. I cancelled that because of the doctor's appointments that I ended up cancelling. Good thing this was a mild week.
On tip toes...
2007-11-07 10:44:00
Well, once again, I have to avoid my baby girl as much as possible. I have a TERRIBLE cold. Actually, Molly had it first. When she got up yesterday K had a TINY bit of one...and by last night I had a full blown painful cold. My throat is on fire, my head feels like it's in jell-o...K was supposed to have an appointment with the pulmonologist today...but me going into a CF clinic with a full blown cold, and Molly just getting over hers...NOT a good idea. When I said it to the nurse, she agreed but then instantly got on the "Kennedy isn't sick, is she?" I said that she had a tiny bit of a cold...but not severe enough to cause panic yet. Her nose ran a little yesterday, but that was about it. I gave Molly a bath yesterday because she has the tendency to "run and wipe" (i.e. Nose runs, she wipes it...into her hair). She was all clean and shiny and soft-haired...and by the time her nap was over...so was that idea. *sigh* I hope she gets over her cold soon so that she no longer
Terminology Tuesday
2007-11-06 10:12:00
Starting next Tuesday
, I'm going to start a weekly snipped called 'Terminology Tuesday'. I'll be going in depth with definitions and terminology that special needs parents know. Different conditions (autism, CF, Fragile X, etc.), and therapies and equipment. If you have a topic you'd like to see covered, please let me know! Either respond to this post, or email me. I'll be happy to take suggestions!!!
Breaking the law...
2007-11-14 09:48:00
Judas Priest reference...yeah. Good way to start your day *lol*I'm not...technically...breaking the law. I'm taking Molly to preschool today! No, it hasn't been 24 hours since that nasty little 102.5 temp she had last night...BUT...she has nothing today. She's still a little stuffy...but nowhere near as bad as she has been for the past week. She's a little crabby...but...Honestly, not sure if I'm doing it for her, or me...but I think she really needs to go today. She missed one day last week and I don't want her to get out of the habit of being comfortable at school. Plus...it gives me a couple hours. Is that a bad reason?
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Terminology Tuesday
2007-11-13 20:17:00
For the first TT, we're going to cover SID - Sensory Integration Dysfunction (also commonly called Sensory Processing Disorder).Definition of SID:A neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception).The layman's definition: Difficulty processing sensory input. SID can be a standalone disorder, or it can be symptomatic of other disorders (such as forms of PDD, Tourettes, or even dyslexia).SID is usually diagnosed by an Occupational Therapist.
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Still...again...not sure which
2007-11-13 19:41:00
Molly has a fever. When I first took it, it was 102 by ear. I gave her motrin and it went UP to 102.5. I'm monitering it, knowing that fevers always peak at night, but if she's still high tomorrow we're goign to the peds. She did just get a flu shot on Friday. *sigh* Looks like we're missing another day of preschool.So, of course, by default we have to monitor K closely too...because if she develops a fever we have to have to call the pulm. Oy.
The Plunger Debate
2007-11-12 13:24:00
This occured yesterday...**DH: *taking mitt out of trash* Why is this here?Me: It was on the plunger.DH: We can clean it up, sani-Me: It was on the PLUNGER. You know, the poop-sucker?DH: You have cleaned up poop and vomit and all sorts of things...can't we..Me: It's an exfoliating mitt...it's been on poop-encrusted rubber poop sucker....No, it stays in the trash.**I'm sorry. I'll clean poopy diapers. I'll clean vomit. But I will not exfoliate my skin with something that has been sitting on a plunger. I must draw the line somewhere...right?
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Picking Myself Up...
2007-11-12 09:19:00
In case you couldn't tell (from my posts on all 3 blogs), I was pretty miserable and peeved off yesterday. Among other things it was time to change my estrogen patch...and it's my last week (yup, Jess...that time)...and I was just in a cruddy mood . I thought my cold was going away, but I'm still running. I shouldn't be surprised by that, Molly is still running, too. Onto kiddo stuffs...**K is about to drive us completely batty! She had a sleep study done way back in April, and was found to have "minor" sleep apnea. They told DH that her disturbances were about once an hour and not enough to mean much. The child doesn't sleep. She acts tired ALL the time, but I put her down for a nap and she sleeps for, at most, 45 minutes. Heaven forbid I change the laundry during nap time (in our teeny house, the laundry is right outside the bedrooms), she wakes up immediately and starts shrieking, whether her sister is done napping or not! At night we have a little better luck. She s
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I hate weekends...
2007-11-11 13:59:00
I know, I used to love them once upon a time. Now I hate them. DH is home all day, I have the girls to deal with, and DS is not in school. My BFF is never online to play, and I get totally overwhelmed with house, and family...and there is no escape (It's hard to come up with things to do that are FREE...and since we have no money, free is all we can do). This weekend we add on one sick hubby and two girls still recovering from sicky...not to mention that I still feel like crap (today is the best I've felt all week).
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Because I'm such a follower...
2007-11-19 21:23:00
On top of my usual baby-filled posts...I'm going to follow the 'cool girls' and post my "How I met my hubby" story here. Well, the story of me pre-hubby will be involved...and I will warn you...I was STOO-PID, NEEDY, and PITIFUL. But, hey...I grew up...sort of.Oh yeah...and involved in that story (and it's aftermath) will be the story of how NONE of my children should be possible...and how/why some days I blame myself for K's issues for several reason (no, not the CF...that's a genetic roll of the dice).Anyway, the story of poor, poor, pitiful me (and subsequently my poor DH) will start (barring any hospital runs) tomorrow!
Back from the hospital...
2007-11-19 15:48:00
Whenever my blog starts working again, here's my update!!Bad news - definite crackling in one of the lungs. Wheezing on both sides.Good news - Not severe enough for admittance yet. Because of good history over the summer of good throat cultures and lung function, he's going to trust the antibiotic for now. How we proceed - Continue on as we have been. If there is ANY change in how well she breathes, she's going to be admitted. Translation: If she wheezes harder, or has labored breathing (seeing ribs when she breathes) we're to call immediately and get her in. For now we trust the meds...and cross our fingers!!
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We go to the hospital...
2007-11-18 23:43:00
We're taking Kennedy into Riley in the morning (or tonight if she gets worse). The precaution of an antibiotic was too late. She developed a fever last night, and has been having bad coughing fits all day today despite 3 percussion treatments and two nebulizer treatments a day.So we called again tonight. The doctor said we can take her to the ER tonight, or wait until tomorrow and just take her in when the CF clinic is open. For the moment, we're opting to take her tomorrow. If she has trouble sleeping because of her cough, we'll take her during the night.Erik has called into work tomorrow and we are likely all four of us going up to the hospital
in the morning (Denver will be in school). She may or may not be admitted. I'll try to keep you updated. But tomorrow will be very long for the girls...there will be X-rays, a lung function test, and probably IV antibiotics for K. Please keep her in your thoughts...we' re hoping that we'll be nipping it in the bud and that it isn't too
This is my life....
2007-11-18 09:48:00
Right now while K is sick, this is my life. 3 times a day, 30 minutes a piece - plus 5-10 minutes on the nebulizer (I do not have that on video because I have to pin her down on my lap to do it properly) twice a day. If you listen closely, you can hear her letting her voice vibrate with it (I know it's tough over the sound of the machine).And for an update on her being sick. The pulmonologist put her on antibiotics as a 'precautionary' measure. We started them this morning, but we started them too late - she spiked a fever tonight. She's miserable...red nosed, red-eyes that are tearing, sneezing, coughing, and vomiting...it's breaking my heart. Her first real illness since the diagnosis, and every cough just makes me tear up. Will I get 'used to' this?
*pointing a finger*
2007-11-17 15:14:00
Go over to Side Dishes for Silly Saturday!! My fav puppeteer, Jeff Dunham, is featured today :D I love that guy :D
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How many times have I done this?
2007-11-17 12:09:00
I've been a mom for how many years? I've faced how many illnesses? I myself was a sickly-ish child with allergies out the arse (Seriously - Milk, Corn AND Wheat? Did God hate me??)...So why is it I get paralyzed with fear when I find THIS:(clickie for better view of hideousness)Seriously...I took off Molly's PJ's to prep for bath and rash all over! Instead of calmly saying, "It's likely roseola"...I freak and call DH. "OMG! There's a HIDEOUS rash on Molly! WTF?!?!"DH ever so calmly reassures me (I love that I'm calm when he's flipping and vice-versa) that it explains the fevers of the past couple of nights...and was probably roseola...and he'd had it when he was a kid...and he had to get back to work.*thunk*Yeah. I have called the pediatrician. I'm waiting on a nurse call-back.I have also called the pulmonologist's CF nurse because our worries have been realized...K is coughing. Wet, phlegmy, nasty cough (which I think is good...means she's bringing it up)...so I
More Accomplishments...
2007-11-16 06:52:00
Yesterday I promised updates of another Molly accomplishment, and here it is...Wednesday I took the girls into the bedroom where DH was watching a movie. They were playing on the bed, climbing all over him and me...just have a grand old time. While playing, I often play 'word games' with the girls, trying to get them to repeat the sounds. K is always game, copying to the best of her abilities. So somehow that night we ended up saying "Up, Down." I think K had said 'happy', and it sounded similar to up/down, so I went with it. Anyway, I start saying "Up, Down. Up, Down." K is copying it...and suddenly I take note of Molly.She's standing up, and sitting down. Standing up, sitting down. She KNOWS what Up/Down means!!! Thinking it was a fluke, we moved on...and then started again...and she started doing it again! Up, down, up down...Then she started jumping to get us to say it faster!!! We always suspected (pretty much knew) there was more knowledge in her head than she co
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Is it Potty Time?
2007-11-15 13:20:00
For some giggles, check out my Side Dishes today...it's all about the men :P**********We started at 18 months, but potty training was a useless endeavor then and fell to the wayside. We started again at 2 years, very little success. Then, about four months ago we started having potty time freakouts. Molly didn't want to go anywhere near the potty! She'd cry and scream.Over the past few weeks she's been 'hiding' when she goes. Going behind the arm of the couch, in the corner, looking mildly destressed. There are times when I ask if she's going potty...and she ignores me, or vehemently shakes her head no (I don't push her)..but then there are times that she nods her head emphatically and says, "Yeah! Yuck!!" (Yes, we are fond of the word 'yuck' in my house).Today, I changed her dry diaper and said, "You want to go potty?" She actually nodded yes (wow!) - and we went. She sat on the potty for five minutes...nodding yes when I asked if she wanted me to leave the room.
She said Mommy!!!
2007-11-25 15:47:00
I'm in heaven today...Molly said MOMMY!!!! This is huge huge huge for us!! Neither of my girls says Mommy
on a regular basis (we're all about Daddy in this house)...and Molly has NEVER said it!! I was very excited to hear it :D Now I'm a proud Mama!! More stuffs coming soon, later today...It's time to get the little brats out of bed!
A Day Off
2007-11-24 19:43:00
Today I had a day off!! Well, a work days worth!! I left at 9AM today and didn't see my kiddos until about 2:30 in the afternoon. We spent the afternoon together out. We (sort of) got rid of the car (long story, for another day...and you will get it). And then came home and the girls crashed.I got a WONDERFUL pedicure w/ a neck massage (brief, but wonderful), a great massaging chair and some wonderful scented oils of my own choice. My nails are all painted (something that has not occured for a LONG time) in a beautiful shiny burgundy color (It's called 'Wrapped in Rubies')...and my feet feel sooo soft. My manicure was nice, but more for the humor of my manicurist than for the manicure itself...it wasn't over the top and he didn't even massage my hands (my fav part of a manicure)...BUT, he himself was hilarious!!So, I got a nice little Mommies Day Out. Got to chat and relax with the girls, ahve a little lunch (that got cut short for my car appointment)...and it was sooo wo
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