Thursday, January 22, 2015

Trying to Save Teeth

Over the last few years, the official diagnosis on Secora's chart has rotated between "sensory processing disorder" or "sensory integration disorder" or "skin sensation disturbance" or "feeding problems" or "nutritional problems" or "eating disorder" (I hated that one...that showed up on her chart when she was 10 months old).  They're all really just different names for the same problem and the specific wording/diagnostic code depends on what search term the doc types into the computer that day.   No matter the name, the medical concerns aren't always quite as simple as just getting her to gain weight.

Lately, it's her teeth.  She's seen a dentist every 6 months since she was a year old.  We have a great pediatric dentist we've seen for years that's known as the best pedi dentist in our town.  Every dental visit, I sit and cringe waiting for him to tell me she has cavities.  I figured they were coming because her diet sucks.  I also had to hold her down for a simple exam, so I knew she couldn't sit through a filling.   But every visit, she's gotten a good report.

At the end of September, she had two spots that didn't yet need fillings, but we needed to watch.  I stepped up the flossing in an effort to head off a problem.  Then, right around Christmas, it seemed like her teeth started to all just rot away.  I could literally see chunks of tooth missing all of a sudden.  I frantically called the dentist and took her in for an exam and the news was just as bad as I'd expected.  At least half of her teeth are so rotted they will need to be capped.  A few are so bad they may need to be pulled and have spacers put in.  He kept checking the chart for the date of her last exam because even he was shocked they had all decayed so badly so quickly.  She DID cooperate with the exam wonderfully this time around, but was clearly barely holding back her panic, so she still can't sit through a single filling, much less repeated visits for such extensive work.  There's also a decent chance she'll regress on eating again anytime work is done.  So it was decided to schedule her for a trip to the hospital where it can all be done at one time under general anesthesia.  It takes a few weeks to get that scheduled, so right now we're looking at 10 caps, but there are a few other suspect areas that I'm betting will need work by the time we get there.

The dentist thinks her teeth deteriorated so quickly due to a combination of her low vitamin D and her pediasure intake.  He was very clear that if she needs pediasure she has to take it, but also said it's pretty awful for teeth.  She had already started extra vitamin D supplementation and I'm pretty much brushing her teeth every time she eats anything now in an effort to save the rest of the teeth.

Feeding problems......the gift that keeps on giving.  

Thursday, January 15, 2015

2015 Goals

There's a lot of upheaval and uncertainty looming this year, so I've had to think over what goals are both feasible and reasonable to prioritize.  I think I've narrowed it down!

1) Develop short and long term goals for my business.  During this stage of life, I've been just taking lactation business as it comes.  I work almost entirely on word of mouth referrals and have a volume of business I can comfortably handle.  As the girls get older, it will be easier for me to do more and I want to spend some time thinking about what that will look like.  Josh also feels like I should think bigger.  I'm good at what I do, I have stacks of thank you notes from mothers I've helped.  He's suggested I think about becoming a conference speaker or writing a book or similar resource.  Those would be long term goals if I decided to do them!  Short term, something along the lines of better accounting and marketing and organization in general.

2) Maintain tri fitness in the absence of races. I asked for an entry to my favorite triathlon for my birthday, but that's probably the only race I'm going to do in 2015.  Before I knew the medical bills looming in our future, I was contemplating doing a half ironman this year though.  If I want to keep that possibility on the horizon for NEXT year, I have to stay in shape.  I will be pressed for time during a large chunk of the year, so I don't want to aim too high on mileage, but I want enough to keep me in a place where I can pick up a serious training plan next winter.  With that in mind, I'm aiming to swim at least 50 miles, bike at least 325 miles, and run at least 120 miles during 2015.  I also want to log at least 75 strength training workouts.    I don't generally record my workouts, so I might have to make myself a sticker chart like the kids!

3) Not have too much debt at the end of the year. Um.....hard to quantify this one.  We don't yet know what final bills will be, but we'll probably hit Secora's out of pocket max when it's all said and done.  We also really want to make it to our nephew's college graduation this year, which will involve some amount of expense even though we plan to drive and camp our way there.   We don't generally carry any credit card debt, but I don't know that "no credit card debt by the end of the year" is going to happen this year.  Something like less than $5000 owed on credit card or not-yet-paid medical bills is probably attainable, but a reminder for me to not grab dinner at the local burger joint.

4) Start Christmas sewing early.  There have been too many years where I get a grand plan to sew some big Christmas gift in November.  This year, I'm going to actively look for gift ideas in July.  Then I have to convince myself to actually work on and finish them without a deadline looming, but it's gotta be better than my usual last minute ideas.

The first half of 2015, at least, is going to be just getting through each challenge one step at a time, so I think that's enough for this year!

Tuesday, January 6, 2015

The Next Step

I've been sitting on this post since October.  I write a little bit, then I save it.  Then I write a little more, then I erase everything.  I'm not completely sure what the mental block is about other than that my own feelings about all of this are so fluid, it's difficult to write about it succinctly (because I do succinct soooooo well under even the best of circumstances).

Ever since Secora was in the hospital back in May 2013, every bit of feeding progress has been an uphill battle.   Her preferred form of calories is pediasure.  Given the choice, she would subsist on nothing but chocolate pediasure.  This is actually a big improvement.  When she was younger, she didn't take pediasure and we had no "back-up" for oral intake.  In fact, for weeks after she was in the hospital, she would ask me to take her back and put the "needle" in her arm again so she didn't have to eat.  With weekly therapy, she did eventually get back to taking mostly solid foods.  Her typical diet consists of waffles or oatmeal for breakfast, chicken nuggets for lunch, a corn dog for dinner and dried mangos, vanilla yogurt or nilla wafers for snacks.  Every. Day.  There is slight variation from that, but it's very slight.  Tyson stopped manufacturing the chicken nuggets she eats for a little while and we were scrambling to find her something else with some protein in it and we had people searching for them in several different cities.  Some days she might eat pretty decent and take in a good number of calories with "real" food, but she has not gained weight without pediasure since she was in the hospital.  For a while now, feeding therapy has consisted of working for about 2 months to get her to the point of taking small bites of a food (actually eating 1-2tsp), then she stays there for a few weeks and then completely drops the food again.  She's dropped long term "safe" foods for baffling reasons---granola bars because she saw something she thought was a peanut in one (it wasn't, but she hasn't touched a granola bar since), strawberries for who knows why, even candy has been dropped lately.  Making food extra sweet was a way to entice her in the past, now she won't eat chocolate unless it's plain.

Eventually, her therapist said we really needed to consider taking her to a specialized feeding program for an evaluation.  Such a thing doesn't exist where we're at, we have to drive 3 hours to get there.  We got all of the paperwork put together from the therapist, the doctor and us and got her on the books for the evaluation.  She went just before Christmas.  This is a program that uses an integrated approach, each child sees an occupational therapist (OT--they work on sensory issues), a speech therapist (SLP--they work on oral motor and swallow coordination problems), a dietician, and psychologist (to look at the behavioral side).

As a mom who tends to fret about not doing enough, I was worried about how this appointment was going to go down.  A not small part of me was worried they were going to tell me I had royally screwed up and just not tried hard enough.  Instead, they told me we were trying too hard and need to push her less.  I knew she didn't have motor problems (which the SLP confirmed), but I thought the psych might say her problems were behavior based.  That she was a regular ol' picky eater that we let get way out of hand.  Instead, she told me there's not really much of a behavior component at all, that she's willing to work even when it's clearly really really hard and that she's easy to motivate.  I've always felt like the problems were largely sensory and that was confirmed with the OT's report that there are ALL sorts of sensory things going on and while our at-home sensory work has made the outward signs of that better, the part of it that directly relates to feeding isn't really being addressed adequately.  She sees an SLP at home, not an OT, so this fits.  We used to do OT, but we had a less than fabulous experience and chose to drop it years ago because it wasn't resulting in any improvements.  Secora adores our SLP and works well for her, so we've settled for the SLP doing a limited amount of sensory work with her (she has access to a full OT gym and supplies).

I and our therapist suspected the therapy recommendation was going to be a few days at the feeding program every few weeks, then implement techniques at home in between.  So I was a little shell shocked when they recommended day patient treatment.  That means all day, 4 days a week for 5 weeks in a row.  She will have two meals a day at therapy and LOTS of OT work in between.  Because it's so far from home, they give us a referral to the Ronald McDonald House while we're there.  We have friends and family that can help with the big girls, plus they CAN go with us (though it's obviously not ideal).   The logistics are a bit nightmarish, but don't bother me as much as the what ifs.  They think they can get her off pediasure in 5 weeks.  They think they can teach her and me enough that she won't need any formal feeding therapy after she's done.  This would be great.  Hopefully it happens.  Forgive me if I'm skeptical.  We don't have many options left though, we are kind of at the point of either sinking our eggs into this one basket, or just giving up, because we haven't made any real progress in a very long time and every illness sets us back for weeks.  Other things, like her tolerance of food smells she doesn't like (peanut butter is big....she HATES it, her sister LOVES it) has steadily worsened over time.  So we will do what we can to assure the big girls that they are loved and cared for and we aren't pushing them off to the side, while we interrupt our routine in a big way to support Secora in what will be a full-time job worth of therapy for over a month.  We will count our blessings that we aren't there for anything more serious and that even if it was all pediasure, at least she IS taking all her food orally.  We'll be glad this program even exists within driving distance and that there are lodging options to ease the financial cost.  And we'll hope that an integrated, intensive therapy program makes it easier for her to tolerate or even enjoy this most basic part of life.

Sunday, January 4, 2015

Family Quilt

This year's big Christmas quilting project didn't take quite as much work as the Twilight Sparkle quilt last year, but I still didn't finish it until 1am the night before.  Mostly because I kept running into small road blocks.

I had seen a family tree quilt online that used family member's handprints as the leaves.  I loved the idea and wanted to do one for my mom.  Once I got started though, I couldn't find a wood grain patterned fabric and I also decided we didn't quite have enough hands to make it look good.  I started looking for other family tree type quilt ideas.  I came across someone who had done a crossword quilt and decided to merge the ideas.

First I did the cross word part.  I was able to use a black with red hearts and plain pink fabric I already had on hand for the background.  For the letters, I used freezer paper cutouts to paint them on.  I just cut a few pieces of freezer paper to 8.5"x11" size, then ran them through the printer so I had basic font letters on the paper side.  Then I cut out the letters with an exacto knife.  With a press cloth between the paper and the iron, I ironed the paper, waxy side down, onto each square of fabric.  This sticks the freezer paper in place and makes a great stencil.  I painted over it with acrylic paint mixed with fabric medium, then carefully peeled the paper off while the paint was still wet.

I had traced all the kids' and grandkids' hands on paper and cut them out.  I ironed interfacing onto white fabric, then used my paper as a template to cut out everyone's hands.  I also ironed interfacing onto another fabric I had to make circles for backgrounds.

I had picked up some stitch witchery (which I'd never used before) and was counting on it to hold the hands in place while I quilted around them.  It kept the hand on the circle, but did not adequately stick the circle to the quilt.  So I pulled the hands off, and zigzag stitched the hands to the circles and set them aside.  I machine quilted around the crossword, then pinned the hands on and zigzagged around them (through all layers of the quilt).
I couldn't decide what to do with the rest of the quilting.  I needed something to fill the big spaces around the edge, but I didn't want a pattern, because I didn't want anything over the hands or names.  Stippling to the rescue!  I finished this up with a soft light purple sheet I had in my fabric stash for the backing and made binding out of the same sheet so it matches the back.

You can't tell from the picture, but each person's hand is next to their name and the boys' hands are zigzagged in blue and girls' are zigzagged in pink.  Between the two of those, it's easy to figure out whose hand is whose.

When Josh was helping me take out basting pins and I was fretting about little details I felt weren't 100%, he rolled his eyes and said my mom was gonna cry when she got it.  Then I rolled MY eyes and said, "whatever".  I lost.

Saturday, January 3, 2015

Christmas!

It took me a little while to get pictures together, but yes, we did have a fun Christmas!  It did sneak up on me just a bit, but everything turned out okay in the end.

On Christmas Eve, my parents came up a little after lunchtime.  Everyone visited and I started baking for Christmas dinner.  The little girls girls made their cookies for Santa.  Secora chose chocolate chip and Sedona chose carrot cake cookies because she thinks Santa needs to be healthier.  Sierra is in on the Santa bit, so she supervised/helped her sisters instead of making her own cookies.  The carrot cake cookies were better than I expected, they just left out the pineapple.





We put the kids off on opening presents for a little bit, but as soon as dinner was over, they were chomping at the bit.  Things were a bit modest this year because we know we have a lot of cash outflow coming up this spring, but the kids were still really happy with what they got.

Super excited to have her own "school books"!
And socks.  This child has been excited about socks all her life.
Books and games and clothes, oh my!
We recently moved a spare bed out of Sierra's room.  She told me the empty space was a PERFECT reading corner and that she really wanted a comfy chair to go in her reading corner.  Well who could resist that?
The one present they all REALLY wanted was a set of walkie talkies.  We had an old set just sitting around, so we bought another set that could use the same channels and then wrapped them all up together.  Since this present was to all of them, it was set aside to open last.  After they opened the rest of their presents, sweet Sedona says, "well, we didn't get walkie talkies, but this is still the best Christmas!"  And then we gave them this last present to open.  They were SO excited.
I only got a blurry picture, but Secora and Sedona were really happy to get matching gymnastics outfits.  It took about 4 days to get these away from them.  It seemed no matter what we did, they'd show up in these again.
Another favorite gift was a big swing from Uncle Coo and Aunt Jen Jen.  It took a couple days to get this hung up for them, but once we did, we couldn't get them off of it!
After more visiting and some ice cream, grandma and pa-paw went to spend the night (and open presents the next morning) with the other set of grandkids.  We checked NORAD and found out Santa was already in Florida.  These girls ran off to bed faster than I've ever seen before!

The next morning, it was time to see what Santa stuffed in their stockings:


And, of course, Santa Paws always leaves a treat for puppies (he wasn't too interested in waiting to pose)
At lunchtime, all the family members came back over for "the big Christmas Feast" as Sedona calls it.  A good time was had by all!  One of the best parts is Josh was off work all last week.  Even though we were home, it felt like vacation.  We've all had a chance to just sit around without ten million things to do!!

Friday, January 2, 2015

2014 Goals Wrap-Up

My computer decided to die right after Christmas, so it's taken me Josh a while to fix things up so I can get pictures on here and write up the regular end of year posts.

First up is the 2014 goals wrap-up, because all I need is basic internet connectivity to do that!

1) Rank in the top 10 in my age group in a sprint triathlon. I did technically accomplish this by getting 5th place out of 18 at Bucket List Tri.  This is billed as a beginner's triathlon though, so it wasn't as competitive as the race I was really hoping to do this at.  The race I wanted to meet this goal at got moved up by 3 months, so I did not get to train as well as I'd planned before it.   My rough goal was a 10:30 400m swim, a 41:00 12mile bike, and a 32:00 5K run with transitions in the 2-3 minute range.  When I look back at all my races this year, I met that goal on the swim (at Bucket List Tri), was 2 minutes too slow on the bike (at Tejas Tri) and was 2 minutes too slow on the run (at Tri Aggieland).  My transitions have improved and tend to range from 30 seconds to 2 minutes.  If I'd put all my races together into one super race with a moderately competitive field, I probably would've been good!

2) Redo the header at the top of my blog. Done!  Now I really need to work on cleaning up everything else.

3) Finish school by the end of May. I think we did, but I honestly could not tell you at this point whether we did or not.  Which just goes to show you how important it is to stick to some arbitrary date, I guess.

4) Take some sort of first-aid and/or CPR training. Done!  I took a CPR/FA course so I'd have it for Girl Scouts this year.

5) Pay at least $1,000 extra on student loans. Nope.  Did pay about $300 extra.  We have discovered Josh qualifies for a student loan forgiveness program because all of the work he's done since graduation has been in government positions, so we got the ball rolling on that and he has to put in a few more years of work before it can be done, but there's not a financial point in paying more than the minimum in the meantime.  There is a small chunk that doesn't qualify for the program that we'll still be working on, but at 2% interest, the savings is so small it's hard to be motivated to do much extra.

Not all that bad.  I've got some 2015 goals bouncing around, some of them might end up being less concrete.  Definitely something triathlon related and something stress reduction related.  Maybe a better school record keeping goal now that Sierra is getting to middle school.  I do better with something to DO instead of trying to limit something, but some sort of social media limit goal is probably in order too.  Time will tell, I've got to work on those Christmas posts before grandparents start hunting me down for pictures!

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