Friday, October 24, 2014

7 Quick Takes: Of a million places to be in one week

I totally did not intend to go an entire week without a blog post, but we have been very on the run this past week! Lots of things to share, so we'll hit the highlights here. No time for pics now, will try to update with photos tomorrow.

Last Sunday, our parish children's choir was invited to sing for the noon mass downtown at the Cathedral. Sunshine was so excited! Papa Bear sadly was working, so we arranged for his twin brother & wife to keep Fidget (which allowed him to be there for our niece's birthday party) while my mom went downtown with us for mass. We were nearly thwarted in our attempts, as my mom saw a couple of small pieces fall off of my chair as she was putting it together at the church - pieces that hold the backrest on! I didn't have any tools with me, but thankfully a parishioner from an earlier mass happened to see our distress, found the Cathedral maintenance man who had just what I needed, and he came out to my mom's car to fix my chair just in time for mass. Fr. gave a sweet homily to all the children in attendance, and the choir performed well. Then as part of their "Grand Day" celebrations there was a big block party! Petting zoo, pony rides, face painting, balloon animals, live zydeco music, hamburgers/hot dogs/ice cream/drinks, a man dressed as a shepherd, and even Bubbles the Camel made an appearance. We had so much fun; Aubrey spent a lot of her time going around with one of her choir friends, which made me happy to see her building friendships through her extracurricular activities.

Monday was surprisingly an even more hectic day! We moved Fidget's morning ABA session from home to the clinic, as I myself had a dr. appointment at the neurologist. It was mostly just a routine visit for new prescriptions, but we also did a nerve conduction test on my hands, since I reported at my last visit that here Fidget is 2.5yo now, and I never have gotten full sensation back since the severe Carpal Tunnel Syndrome flare-up from pregnancy. Unfortunately the results aren't good; severe CTS in both hands, doc recommending surgery by the end of the year. So I'll go to see my neurosurgeon in 3 weeks. Normally this is done one hand a time so that people still have one good hand left, but just taking away one hand removes my ability to push my chair, transfer, use the bathroom, etc. so I may ask him about doing both at once. It means I'll be completely out of commission, but in this situation at least I'll only go down once instead of twice. The doctor actually finished sooner than expected, so we walked over to Barnes & Noble and browsed for awhile. On the way to pick up Fidget we got lunch at Dairy Queen, then once we had him shot off across town to Sunshine's gymnastics class. I don't normally go with her, so it was a treat to get to watch her practice and thankfully Fidget wasn't as much of a pill as I expected. Her coach reported she can tell she is getting stronger, which is great. We're mostly just in it for the fun and exercise, but I wouldn't be surprised if she gets into competition at some point. My main concern though is just that she develops good technique and conditioning so help prevent injury, which her gym does a great job of ensuring.

Tuesday morning Sunshine and I worked on her room while Fidget had ABA, then that evening we all went with her Daisy troop to a nearby pumpkin patch. The kids had a hayride, story time, got a snack, and each one got a mini pumpkin. Fidget esp. enjoyed himself; so many new sights and textures! He had this one pumpkin that he kept picking up and putting in my lap, so it came home with us as well. Tuesday was also my mom's birthday. None of us wanted her to just sit at home alone all day, this being her first birthday without my dad, but neither of my siblings were available, so Mom joined us for the pumpkin patch then we took her out to dinner. One of the local pizzerias was donating a portion of that evening's proceeds to our church parish, so we took her there. And wouldn't you know, we got sat right next to our priest! Papa Bear and I were a bit nervous how Fidget would do, but we actually managed to all make it through an entire restaurant meal for the first time in MONTHS! This was a huge relief and gave me hope that maybe we'll all actually survive our trip to WDW in the spring.

Wednesday was the one relatively low-key day of the week. Fidget's ABA case worker came to do a couple hrs of parent training with Papa Bear and I while Sunshine *finally* finished cleaning her room. We got some school work done in the afternoon, Sunshine went to CCD, and Fidget had his OT session. I was extremely glad for the quiet day; after three straight days of running around I could really feel myself struggling with fatigue.
Yesterday Papa Bear took Sunshine on a field trip to go hunting! Not much to shoot, but at least they had a nice hike. Papa Bear is on a stay-cation from work so he's been enjoying having some fun time with the kiddos. Fidget had morning ABA yesterday; they recently updated his schedule so he now has a full morning on Thursdays instead of just two hours. During the afternoon Sunshine and I read up on the sun and eclipses, and made two different kinds of pin hole projectors, but unfortunately thick cloudcover moved in about 45 minutes before the solar eclipse began. So we had to settle for watching the live feed from NASA, and Sunshine helped her Daddy fix supper while Fidget had speech. I loooove his speech therapist, and will be so sad when we lose her in the spring (when he ages out of early intervention). She said he is doing so very well; it amazes even her to think back to where we started 8 months ago. He didn't even call me Mama, would only label Papa Bear and Sunshine, not use their names for any purposeful reason, and wasn't attempting to name things around him. He had little receptive understanding as well. He still needs a lot of work on articulation, and there are still some things that he cognitively doesn't understand when we speak to him, but his vocabulary is almost caught up! Absolutely astounds me.
ABA this morning was cancelled, so we had a quiet morning around the house. Papa Bear fixed breakfast, then we all played outside and the kids "helped" him wash both cars. Sunshine has spent the afternoon playing with a neighbor friend, and Papa Bear went out to run some errands for me. This evening we have a Halloween party at Fidget's ABA clinic, which should be lots of fun. Tomorrow I'm going to try to have a regular school day with Sunshine, since we've slacked a bit on the formal school work this week. Fidget has ABA until noon, and Papa Bear is taking the troop camping training class at one of our council's camps. Then we'll all gather around the TV to watch the big LSU/Ole Miss game!
I'm happy to report that although I still have a day or so of medication left to take, I successfully made it through staph-watch without a trip to the ER. There were a couple of evenings I was a bit concerned, but by morning it always looked better. Especially in light of my now upcoming surgery for my hands, it was nice to dodge the bullet of a hospital visit at least once!

For more Quick Takes, visit Conversion Diary!

Friday, October 17, 2014

7 Quick Takes: Of germs and anniversaries

I've been missing doing a link-up since there's no longer a weekly Answer Me This, and our Wednesdays are proving to be way to busy for Whirlwind Wednesday posts, so I'm going to try to start linking up with

So to anyone who may be visiting my little corner of the digital world for the first time, welcome!

Maybe not the best way to greet new readers, but anyone who doesn't want to hear about my heebie-jeebies, feel free to skip this one!

For those who have never had the displeasure of experiencing it, staph infections are miserable. And once you've had an infection, you're "colonized" with it and it can recur at any time. The first time I got it was back in either 2003 or 2004, just before Christmas. I just went through a really painful one in August, and had another one pop up at the beginning of last weekend. I've been pushing my body rather hard lately trying to keep up with all the demands of my life, and obviously pushed it a little too far. I had come down with a cold on Thursday (which was thankfully short lived) and then Saturday I noticed a spot on my leg looking a bit infected. Since this isn't my first trip around this block, I went into wound care mode right away: washing with hibiclens soap, keeping it topically medicated with bactroban, gently helping it drain once it opened up. By Monday it had grown but was still staying relatively in check; I might have considered going in to the doctor then but Papa Bear is working a big turnaround at one of the local refinery plants, and my mom had gone to Disney World with my sister and her two teenagers while the kids were on fall break. So I kept managing it at home until Wednesday evening, when all the sudden the hot redness and swelling really flared up; then I had a second spot appear on my wrist Thursday morning.  So off I went to the doctor yesterday (both kids in tow) for oral antibiotics. I got gently reprimanded from my doc that I shouldn't have let it go so long, and he said it was "a breath away" from needing IV meds. He put me on two oral antibiotics, instructed me to continue what I'm doing with wound care, and that at any sign of worsening or lack of improvement relatively soon, and I'm to go to the ER. Easier said than done with needing someone to watch both kids, someone to take me in, Fidget's ABA schedule, and Papa Bear working roughly 24 hours on two job sites today, but we always seem to have a team of people around us who rally and pitch in when we need it. I just hope that after an initial dose in the ER they'll set up any further doses through home health and not admit me; I can break away for a few hours but can't imagine being MIA from the house for several days!

It's truly only because of Papa Bear that I was able to get over my cold so fast. I've learned from experience that with my chronic fatigue and autoimmune issues, when I'm coming down with something I have to give my body more rest than an average person would need so my body can focus on healing. So thanks to Papa Bear stepping up, I was able to spend pretty much all of Thursday evening in bed, as well as Friday morning during Fidget's therapy and the afternoon while he napped. And Papa Bear always fixes me my favorite sick dinner: grilled cheese, tomato soup, and a cup of hot tea. Now if I can just remember to take better care of myself! As much as I want to tell myself that I'm living a normal life, I have to realize that being an active paraplegic does take a toll on my body, and I need to build more recovery time into my weekly routine.

Speaking of Papa Bear, yesterday was our 10th wedding anniversary. Statistically we probably shouldn't have achieved this milestone: we were together less than four months when we got engaged, only about 14 total months when we got married, we married before 25, I was disabled less than six months after we got married, we've been through debt struggles, unemployment, and now raising a child with special needs. I'm pretty sure all of those should raise our likelihood of divorce, but before we got married we both discussed the fact that we intended this to be a life long commitment. "Irreconcilable differences" just isn't an option for us. We even went so far as to choose a covenant marriage license when we got married to ensure that if there was damage to our marriage, we would have to do absolutely everything in our power to repair it. Now, I know that I have my share of personal faults, just as there are things that Papa Bear does that bug me. But it's kind of like with kids - you have to pick your battles. Some things might be annoying, esp if they are habitual, but not worth making an issue over. If something is worth making an issue of, we try to address it calmly; he's not my third child, so there's no reason to fuss at him as if I'm fussing at one of the kids. (Though also like with kids, there are definitely times that we lose our temper with one another.) And for myself, if I feel like a bunch of little issues are piling up and I'm really getting aggravated with him, I try to sit down and literally make a list of all of his good points so that I don't let it build up until I snap. When I sit and remember all the reasons I married him in the first place, and all the ways that he has proven himself to be a good husband, then the little things don't seem so bad. I also try to sit and think about my own behavior, and if I have possibly done or said anything to provoke him annoyances. And unless one of us says we need time to cool down and finish a discussion later, we try to never go to bed angry. It means we've sometimes stayed up well into the night to work things out, but our marriage is certainly worth it.

While we were certainly excited and proud to have achieved such a milestone, our celebration yesterday was much less exciting. I spent the morning at the doctor, Fidget had two therapies, Papa Bear worked a little late, and he had to get to bed early because of his early wake up and long hours today. So for now it was just Papa John's pizza and Pitt football on the tv for our "celebration". (Hey, at least Pitt won!) Papa Bear has to take his vacation time soon so he doesn't lose it, and we have some gift cards to go out to eat, so hopefully we can actually enjoy a date night in the relatively near future.

The one exciting thing we did do for our anniversary was to get new wedding bands. Neither of us can actually fit in our wedding rings at the moment, not to mention that mine was getting a bit banged up from constant contact with my wheelchair rims, and Papa Bear isn't allowed to wear his gold one to work. So for our anniversary we got silicone wedding bands from Qalo, which will be both more forgiving of size fluctuations, as well as more suited for our lifestyle at this time. It was only recently that I had to quit wearing my original wedding band, but it's been quite awhile since Papa Bear wore his; it was nice to look over during dinner last night and see a ring on his finger again.

With me not feeling well and so much to juggle, school for Sunshine has been rather minimal this week. We did take an afternoon Tuesday to work on the basics, but mostly we're working in more of the fun things right now. (She's expressed to me some feelings of me never having enough time to do fun things with her anymore.) Last week in my bed we did 3-D illusion pictures of our hands, we've been reading books about cave men and germs, and working on some skill challenges for her DIY membership. Yesterday she drew what she thought a swimming skill badge might look like and made a list of potential requirements to earn it, as one of the challenges for the Maker badge. Another challenge is to make something that is your avatar picture, so we started making some lady bug rocks which we hope to finish today.

As for Fidget, we seem to have gotten past a reappearance of his fecal smearing. I think he was cutting a molar, and also HE IS NOW PACI FREE!! We are seeing an uptick in the pica as a result of no paci, which we knew would happen, but are working with the therapists to address that in an appropriate way. And he's been doing a lot of pretend play recently which is a big change for him: just this morning he and Sunshine were trotting (or at least he tried) back and forth across the living room pretending they were riding horses. Another funny thing he's doing is if he's on his way to find you in another room, he'll say "Coming! Coming! Coming!    What?" as if you had called for him (even if you didn't). So stinkin' cute.

For more Quick Takes, visit Conversion Diary!

Wednesday, October 8, 2014

A wonderfully delicious, not typical day

In contrast to yesterday's "typical" routine, today was anything but. Wednesdays are the only weekday that Fidget doesn't have morning therapy, so it's always a roll of the dice how our morning is going to go. Some weeks he'll play nicely on his own so that I can oversee a fair amount of Sunshine's schoolwork. Some weeks he'll be all about Mama time, and inevitably those are also the weeks that Sunshine can't manage to complete a single assignment without me hovering over her.

Today fell into neither of those categories. Sunshine brought me a bowl of cereal in bed. Fidget couldn't yet be bothered with food, and started playing cars. After she ate, Sunshine joined him. And they then spent the ENTIRE MORNING playing together! They played with his cars, they cooked in the play kitchen, there was some serious banging and giggling coming out of their room, and a declaration from Sunshine that her brother got bitten by a spider and died - "but don't worry mama, we're just pretending together."

Did I seriously just hear that??  They are pretending together. In a game that doesn't involve emergency vehicles and putting out pretend fires, which is what most of his pretend play has been surrounding lately. She was dictating the course of a game, and he was following. If I could have frozen time and savored the moment, I totally would have.

I did have to peek in at them at one point, because Sunshine had closed the door on Fidget's bottom bunk with herself inside and couldn't get the latch back open. While I was in there he started emptying out a doll high chair - my old Rainbow Brite doll high chair - and was about to climb in it. Thankfully I stopped him in time, and offered him one of Sunshine's baby dolls to put in it instead. He did so, made a comment that "doll eat" which inspired Sunshine to start a new pretend game. They carried the baby & high chair back out to Fidget's World, and fed the baby doll play food from the little kitchen and read it some of Fidget's board books.

Before long it was approaching lunch time. Sunshine hadn't done a single moment of school, and I didn't care a bit. What had just transpired over the course of our morning was so much more important than anything I or a school book could teach her. She's harbored some difficult feelings about her brother's autism, and the fact that he usually can't play with her like a neurotypical child his age, but I pray that this morning she saw a light at the end of the tunnel and can take comfort in the knowledge that all this therapy is helping, and in time he will become a more equal companion for her.

Fidget requested three bananas in a row, and several spoonfuls of peanut butter for an early lunch. Not surprisingly, he then declared "all done. go nap?" and went down a bit early and without complaint. Sunshine and I ate lunch together, then had about two and a half hours to do the essentials of school work before she & Papa Bear left for CCD and children's choir at church.

(And can I just say I think it is so sweet that he spends the entire two hours there on the weeks he is able to take her? He either goes upstairs to the chapel in the faith formation center or back to the adoration chapel -  in what used to be a sister's residence in the early days of our parish - and prays while she is in class, then he sits in the church and listens to the choir practicing. I loved my man before he was Catholic, but it is so beautiful for me to see him living out our common faith since his conversion.)

While they were at church, we had our first actual therapy session with Fidget's new therapist. We made the choice to part ways with our previous OT for a variety of reasons, and the new therapist is contracted as a "special instructor" with early intervention, which means she can actually work on multiple disciplines. As well, she's a special ed teacher at the school which he would attend, so hopefully she will be able to provide some valuable insight as we near him aging out of early intervention in the spring. She came out last week for just a meet & greet, and within five minutes of starting therapy with Fidget this evening, I could tell she will be a much better fit for both him and our family.

Papa Bear & Sunshine picked up pizza on their way home. Yes, it means that we totally broke Fidget's dietary restrictions, but sometimes the kid deserves the pleasures of a normal life. He sat nicely in his high chair and we were all able to enjoy dinner, and both kids got to watch a little of their favorite shows before bed: Full House for Sunshine, and a particular Fireman Sam movie for Fidget. There weren't even any crazy antics or stall tactics at bedtime.

I know the chaos which is our normal will return, probably first thing in the morning. But the blessing behind that chaos is that when simple days like this drift by, I am now so much more appreciative of them.

Homeschool 2014-1015: A Day in the Life of A Mom on Wheels

I've been wanting to chronicle a typical day in our house since my curriculum post, but I'm honestly not sure that we've had a typical day in that time span! Papa Bear had some weekdays off last week, a re-emergence of Fidget's fecal smearing, and some other non-standard stuff. Thankfully this week we seem to be just dealing with the normal levels of chaos and frenetic energy.

Tuesday, 6:30a Hubs leaving for work, says both kids are wide awake in their bedroom. I fall back asleep.

7:45a Sunshine has gotten her brother out of bed. They come to wake me up, then she fixes both of them cereal. Fidget, despite having asked for the cereal, dumps his all over the table then tosses the bowl on the floor. Yay, I love messes when I'm half asleep.

8:00a Sunshine has finished her cereal, the kids go in Fidget's World to play with cars while my brain wakes up. Finally get my version of coffee, a can of Dr. Pepper.

8:30a Realize that therapists will be here in half an hour, I take my meds and go get dressed. Sunshine eats more breakfast (yogurt and an orange). I then try to coerce Sunshine to get dressed herself. She wants to stay in her PJs, and isn't pleased with what I set out for her last night, so she reluctantly traipses off to find a different outfit. I'm way behind on putting away clean laundry, but getting caught up is not an option for today.

9:00a Therapists arrive as I am changing Fidget for the day. I try to quickly sweep the living room; Fidget swipes GF "Oreos" from the pantry. I finally get him to sit on the couch and eat a banana while watching Mater's Tall Tales on my iPad. Therapist P has a trainee today, so it takes them a little bit to get ready. Sunshine takes out the recycling and brings the can to the road, and fills up her water bottle before retreating to the office/school room. At some point Fidget talks me into a second banana.

9:30a I finally make it into the office, leaving Fidget and a bag of grapes in the capable hands of his therapists. Sunshine is coloring a picture of Our Lady of the Rosary which I printed out last night.

10:00a Sunshine finishes coloring. Claims she needs a snack already. No dice kid, you haven't done any school work yet. At least get through your morning journal, then I'll get us a snack. Fuss fuss fuss, whine whine, then finally she complies.

10:25a Halfway through journal, we have a prolonged potty break.

10:40a Finally getting back to journal. (She can do her whole journal in about 20 minutes; this is just typical almost-7yo dawdling and stall tactics.)
10:42a Sunshine is muttering under her breath that Fidget and the therapists are outside.

10:50a Journal done, we have pretzel thins and cheddar cheese for a snack. Typically I give Sunshine time to go ride her bike about now, but we've been dealing with some major sassy mouth and task avoidance issues lately, so no bike today. I point out that this is a natural consequence of making a 15 minute journal assignment take nearly an hour.

11:00a Get Sunshine going on English.
11:05a Sunshine is whining that this is boorrrrringgggg, I haaaaate schoooool, etc etc.
11:08a Sunshine gets back to work.
11:11a English done...amazing how quickly things done when you focus! Try to capitalize on the momentum, offer to let her do the workbook portion of English after lunch, and keep moving forward.

12:30p we've made it through spelling, a map skills worksheet, and half each of science and math.  LUNCH TIME!

1:40p Kids have eaten lunch, therapists are gone for the day. Fidget has been changed, read a story to, and put down for a nap; Sunshine has about 20 minutes of free time. She opts to get the iPad and go read on her Epic app in my bed. I throw in a load of laundry, check the dinner menu (thankfully just leftovers), catch up on this blog post.

2:10p Twenty minutes turned into thirty, but we're finally getting back to work.

3:15p Papa Bear is home. Reading and religion are done, still need to finish science, math, and the aforementioned English workbook.

4:00p We finish the day's school work just as the public school bus is passing by. Time to start getting ready to leave for Sunshine's scout meeting. Never did get to that English workbook; it will have to wait until tomorrow.

4:15p Papa Bear wakes Fidget to get him ready to go. A litany of "where is..." are sent my way. Smock, tote bag with her Daisy books, the movable pieces that go on the kaper chart I made for her troop, shoes, wipes, sippy cup, etc. One of the most exhausting parts of a SAHM's job is having to know where everything is!

4:30p Leave for meeting. Meeting runs from approximately 5-6:30. They review one of the petals for the sake of our new girls, and finally start their new journey book. Try to keep Fidget from being loud and disruptive in the meeting room, keep him away from the craft project that one of the older siblings is working on out in the hallway. Realize while the girls are eating their snack that I never ate lunch. Or breakfast, actually. Just that snack Sunshine and I had mid-morning. Monthly awards at the end of the meeting - their safety pin, last month's patch of the month, and a couple fun patches from last weekend's trip to camp. After the meeting, talk to her leaders about the investiture ceremony I've been working on plans for.

7:00p After stopping at the store for a couple things, we arrive back home. The remains of the pot of chili are quickly turned into a quick dinner of frito pie.

7:45p Send Sunshine to get ready for bed; Papa Bear and I tag team Fidget to get him changed, teeth brushed, and into jammies. Should probably offer the potty first, but we're all running out of steam, and we're still in the early, low key phase of just getting him used to the potty, so we skip it tonight. At some point when we hit heavy duty potty training we won't have that luxury.

8:00p Read stories to Fidget
8:15p Read stories to Sunshine
8:30p Kids' lights out (though Sunshine will probably read to herself with her little LED lantern). Take my meds, get myself ready for bed.

9:00p Crawl into bed to watch Chicago Fire with Papa Bear.

10:30p Lights out for Papa Bear. I'll pull out my iPad and check FB, play a few games, read until I'm drowsy enough to fall asleep. Set an alarm with intentions of getting up to see the lunar eclipse, but forget to un-mute the iPad from the Daisy meeting, so no eclipse for me.

11:30p Put the iPad away, say my prayers. Good night world until tomorrow!