Ahh A Few Good Days

Last week Little Miss Sunshine and I went to the Sewing Expo in Fort Worth, What fun that was, it was her first conference and she really enjoyed it. Even tho their was only one other child there, she is comfortable enough in her own skin to talk to anyone. In fact She talked to a wedding dress seamstress for a good 40 minutes, while I got to peruse the books in silence. Tho I do believe the phrase "They are a fun bunch of old ladies" was on her lips a few times...  

In the family tradition of "weaving" she now owns her first peg loom.  She really loved making simple bracelets on the loom set up at the show. I'm going to steal it borrow it and make a few lanyards. Finally a place to use up all the extra friendship bracelet thread.  

We took classes in what she was interested in, so here was this quilter sitting in on How to sew Luxury Fabrics,  and Sparkle Twinkle and Shine... tho how to use doughnuts to make shawls and really cool ruffles was well worth watching... and No I'm not telling you how delicious breakfast treats make shawls... well at least not till Christmas.  

It was a fantastic time, we planned it this way to make sure each of the kidlets got enough alone time with Mom. I really find PLANNED alone time is so important to our relationships with our children.  I could see when we took off for St. Louis and left the child who would be bored and rolling her eyes at all the attention the other one was getting behind with friends. I knew she would have a good time but also within hours I was seeing symptoms of trauma surface.  Thank goodness we have a friend who does massages and could step in an relieve those symptoms.  

Having just one on one time really allow's us to connect in many ways with our children. She will never forget eating hot wings at midnight, or looking at all the quilts.  Consider we out grow the T-shirt, or toss the souvenir's,  but memories are forever with us. They make up the fabric of who we are.  Yes the pun is intended; that was for you Ann.  

So many issues I face as a parent I can actually see transformed by the correct application of togetherness. Sweet Potato being left behind because at a Sewing Expo she would be the child who would be bored and rolling her eyes at all the attention the other one was getting... was happy to stay and play on campus. This time I did not shoot myself in the foot and give her pure vacation days... Noooooo I gave her all the hard bits of school... *grinning* so these last few days have been fabulous. Her work load is not overly difficult nor is it going extra long.  She also realized I'm a good parent for her, seeing how other households work can sometimes shoot us in the foot because now she wants me to brush her hair like so and so's mom does.  can give us an appreciation for the freedoms and responsibilities we have in our own households. 

We also have started co-opting with another family and I think having that presence in and out of the house has added "everyone is on their best behavior" to the equation.  I'm looking forward to sharing the load with the other mom, and I'm finding it a joy to have another child added into the mix, who has fresh perspectives and handwriting I can read without wondering if it's an E or an I.   Tho whats with all the kids wrapping their thumbs when they write. I think I'll be breaking out the golf pencils for everyone soon... 

Sweet Potato's Very Bad Day.

We had family time this weekend and we ate Lebanese food, watched Cultural dances and experienced an "Eastern" form of Christian worship. Not bad for a weekend.  Last week I was just having a rough week and my heart wasn't in my job as teacher. Processing medical stuff, and Life (with a capital L) was too hard. So I let my children off from school for 2 whole days... Why do I do this to myself? It's like setting myself up for failure...

Last night I didn't set up the workboxes, I was tired! So I set my alarm for early this morning and with the help of a thunder storm I dragged my anemic body out of bed. While I'm prepping school Sweet Potato comes in and informs me I'm wrong... You see I bought her leopard print "duct" tape as a treat this weekend, but its actually "wall" tape the fact that it's really a long vinyl sticker which I think would be easier to use, uh darling you can cut it with scissors and it doesn't stick to them... was irrelevant... it wasn't "duct" tape and I was wrong to buy it for her.  Cause I'm always wrong... right... I'm mom... I also secretly know where everyone shoes are too right??? 

Not the way I wanted to start my day, since she was !devastated! that it wasn't duct tape, (oh the horror)  I gave her 2 options:
1. I could put it on the craft shelf and anyone can use it, since she didn't like it.
OR
2. She could try again, but this time say something like "Mom I don't know how to use this tape, can you help me?"

Funny she opted for option 2.
Happily I only had to prod her to eat breakfast. She was 15 minutes late to school... alas this was a foretaste of what was to come.  As I worked through her note book I noticed missing work. As I checked her narrations I discovered a need for more guidance.  As I set up her favorite subject I noticed a distinct lack of answered questions. *sigh*  they were all character issues she struggles with, At her age I would have left them blank as well.

So after reviewing all the incomplete work that needed to be completed in the homework box... she was now a good 45 minutes behind. Yet I still had hope, dictation went quick, then we had a disciplinary issue. *sigh* Time in's take so long!  Moving on to grammar she bombed the oral drill.  I was forced to add review and literature to the homework pile.  That did not bode well for her attitude.  Upon reaching Algebra (with a capital A) and having to find the Least Common Multiple using Prime Optimization, she fell back on to the dumb game and could not tell me what a prime number is, or how to do it... I had a suspicion she was a bit lost as to the "why" tho she had the "how to" down last week.  I was planning on stopping here till she can do it without help.  Following a LSG style I'm having her ask herself a series of questions to prompt herself though the work.  She can now do long division this way so why not LCM? and Prime Factorization??

I called her on  the dumb game and basically she was mad the homework pile is growing (so lets take extra long with math and see if mom gets mad! woohoo!)  This behavior mystifies me
I have lots of work .... ergo
I will not do my work ....ergo
I have more work to do.

This was repeated 3 more times, each time I called her on her behavior, each time she knew the answer but gave the wrong one to see how I would respond. Child give your poor long suffering Mom a break already!  Can you see me banging my head against the wall? She received lunch courtesy of my loving husband, as well as a trip to the principals office for a chat.

Many hugs later I sent her up to do her independent work, and I focused on Little Miss Sunshines teacher led work. One discussion about trusting God, a read aloud on Mozart's family, flash cards and grammar and boom we we're done. I hid in my bed room for 20 more minutes, really it's the teachers lounge.

So I hear lots of foot steps up stairs and I think I better go check. I want to trust but should I? It's not been a good day so far.  I walk up the stairs and get a glimpse of her getting herself back in her seat.  I discover she has yet to complete one of her assignments.  At least she was honest and admitted she was talking out loud to herself about her future.  *sigh*  So were back to trust but verify... setting my timer for every 25 minutes, and walking up the stairs to check on her,  managed to keep her on track. My Knight in Shining Armor helped her with Newtons principal while I made dinner. Her friend with bright eyes visited at 6:30 in hopes she would be done, but alas she was not.  It's 9pm she's actually done and tucked in her bed.

Here's to a better tomorrow. :-) I can still hope right?

And yes I have Sweet Potato's permission to blog about her day. :-) she likes fame and fortune.

Medical Update

For a year now Sweet Potato's Lung specialist has wanted me to take her to see his mentor in St. Louis.  But he didn't want her traveling north in the flu season and well we were swamped last summer.  So I thought this summer we might travel to get a second opinion... he offered 3 other places one of which was children's in Boston. Well my sister lives in Boston and just as I was starting to put the bits and pieces in place, a news story broke about Children's in Boston.  The story is about how Children's tried to terminate the "out of state" parental rights. A bit of digging showed me this seemed to be a habit of theirs and My trip to see my sister and see a specialist was off.  Instead we started to plan a trip to St. Louis to see the guy our current doctor really wanted us to see.  So we made an appointment which was months away because he's a specialist. :-)

But we hit a road block,  due to rising costs of private health insurance our ministry no longer offers it as a benefit.  Shifting over to the ACA was fraught with glitches. We easily spent 80 hours on the phone or website just trying to get past a yellow box. Talked to numerous rude and unhelpful supervisors and experienced just about every dialect in american english.  We made at least 4 different accounts trying to work around the glitches...  We deleted and started again as many as 35 applications.  If not for the help of the company our ministry made available to us, to advocate and walk us through it, I'm not sure we would be insured right now.  It was only after the wonderful young man that was helping us, insisted on our right to file and appeal did we actually get someone at the ACA to help us.  The woman at the Appeals office confide in me that she has over 400 appeal calls to do a week.  That is crazy as she easily spent 3 hours on the phone with me as - yes you guessed it we created a new application and  re-applied.  5 hours after we got a helpful supervisor I was informed by her that she managed to get "around" the glitch and we could sign up... But I had to send 4 document to be verified.

We had been without insurance for over a month.

While we were dealing with this I had to keep pushing back and rescheduling Sweet Potato's appointment.  I'll leave out the Yes she covered no she not, yes she is, no she's not, back in forth we had with the doctors office and my insurance company.  I'm *still* not sure what bills we will see even though I did do everything the Dr. Office wanted. I have to applaud the billing department at Dr Ferkol's Office they were amazing and sweet. They just want to make sure she could be seen and we could afford it.  

So after much paperwork, phone calls, dates moved we finally took the trip to St. Louis to see Dr Ferkol. Who was amazing, kind, informative, and a good educator.  After talking with Sweet Potato and us, looking at all the tests they did in house he concluded Dr Lie's suspected diagnosis as being the correct one. Well he gave us a 99.9% chance Sweet Potato has Primary Ciliary Dyskinesia (PCD).   http://www.pcdfoundation.org  You can check it out at the website. It's a pretty rare genetic disorder.  So we have let him enter her in his study, as Dr Ferkol is trying to find a less invasive way to diagnoise this disease and of course to study it.

We as a family are processing all the information he gave us and reading up on it at various websites. The good news is she is probably over medicated so she may be able to come off of some of them. The bad news is this is going to be a life long battle for her.