MRI Results

Quick update on Ari's MRI follow-up. About that clot in her brain... yeah, you know, the one that they weren't sure was a clot and I was highly dubious about. Uh huh, well, word on the street is that whatever it was, it isn't there anymore. And what that means is probably that it was a clot. And we dodged a bullet. So this is me thanking my lucky stars (it's all relative folks) that we had that seizure so we could catch that abnormality on the MRI and that we had some crazy brave docs who went out on a dangerous limb to treat a clot they weren't sure existed, and maybe saved Ari some serious damage. Yes, this is me saying a big "Thank you".

Ari is off the Coumadin now, as planned. We hopefully won't have a reason to put her back on it either. On an unrelated med note, we are also off the Phenobarb. I don't think I'm going to miss it, but it was a big part of our lives for a great many years. And no, she's not going totally naked. She's got Keppra instead, which should help her to learn better, because it won't fog her up like the Phenobarb used to.

Onwards and upwards!

Panty Princess

My littlest one has joined the ranks of those of us who don’t wear extra-absorbent paper bundles on our bottoms.  Yes, that’s right… before she turned two years old.  She’s only had one accident this week, and I think, on the day before her 2nd birthday, it is fair to declare the little sprite:  officially Potty Trained.  She still wears a pull-up to bed at night and during nap time, because she is a stone cold sleeper, but she has been keeping her pants and her friends dry (Minnie, Dora, & Tinkerbell, that is) during waking hours like a pro.  She’s getting better at wiping, although she still needs to be reminded that we wipe before we get off the potty, not after.

I’m so proud of my Tinkerbella. :)

9 AM MWF

Ari goes to school to have the time of life three mornings each week, while my other two laze around in their pajamas, awaiting her return.

Out & About

We ventured out of the neighborhood in the power chair for the first time.  It was an adventure. And like most adventures, it wasn’t easy.  Ari was a little overwhelmed, and I don’t think she quite got that she wasn’t going to be pushed around like she always has been whenever we go to the mall.  A little bit in a daze (no doubt drained from the heat and from getting all set up), she didn’t really show off her skills like she has been doing lately.  We are planning another trip in two Tuesdays to the library.  I hope she’ll realize what she is capable of and really shine for us then.

Switching Schools

Gabe’s preschool teacher was put on bed rest for her pregnancy, so we had to do a little switcheroo until she delivers her baby and returns to teaching in January.  We were very lucky to find another home-based preschool in a very similar environment with a great curriculum that had two openings available: one for Gabe and one for Gabe’s best school buddy, Miles.  It’s a somewhat farther away and only two days a week, so we are planning on returning to the other one when it resumes, but for now, it is a perfect fit.  Gabe has been doing really well with tracing letters, he has even begun to write them on his own.  He loves school and if he had his way, he would be there every day.

Little Lady

Isabella Juliet will be turning two years old before the month is up. I'm floored. The time has gone by just too fast. My once baby is now a little lady -- one who plays with her dollhouse, is attached to her bear and blankie, is obsessed with dress-up, loves to give cuddles and kisses, sweetly looks out for her sister, plays exhuberantly with her brother, eats with the best of 'em, has no problems with getting filthy in the name of fun, speaks like a three year old, has started wearing Tinkerbell big girl pants and announcing when she needs to go potty, prefers rough-and-tumble gross motor-type toys and activities, dances whenever there is music, never fails to make someone laugh when she tries, displays 101 facial expressions, knows (most of) her letters, numbers, shapes, and colors; has no fear, talks back, says kind and loving things unsolicited, can use her prosthetic hand but prefers to go au natural, and spends her days trying on shoes in the laundry room and parading them around the house (with her mommy's high heels, her sister's sparkly ones, and her own new rubber wellie boots being her favorites). And maybe it’s just me, but I think she’s extra adorable these days. :)

Just sayin’…

Test Kitchen: My Favorite Meatloaf

I may very well be about to ruin my credibility by doing a meatloaf post.  But before you come to that conclusion, go ahead a try it for yourself.  Best meatloaf since Adele’s (my childhood nanny).

Ingredients:

• 2 tsp. vegetable oil 1 small yellow onion, chopped ¼ c. milk
• 1 c. soft fresh white bread crumbs (from 1 slice of white bread)
• ¾ c. ketchup, divided
• 4 tsp. Worcestershire sauce, divided
• 1 lb. lean ground beef
• 8 oz. ground breakfast sausage (Jimmy Dean)
• 1 egg, beaten
• 1 ¼ tsp. Mrs. Dash seasoning mix
• ½ tsp. garlic powder

Instructions:

1. Preheat oven to 350 degrees F. Heat oil in a skillet over medium-high heat. Add onion and cook, stirring occasionally, until tender, 5-7 min. Transfer to a large bowl.

2. Combine milk & bread crumbs in a small bowl & set aside. Combine ¼ c. of ketchup and 2 tsp. of Worcestershire sauce in another small bowl & set aside.

3. Add ground beef, sausage, remaining ketchup and Worcestershire, egg, seasoning mix, garlic powder & bread crumbs to the bowl with the onions. Mix until just incorporated (with your hands). Mound meat loaf mixture in a 9 x 5 x 3” loaf pan. Bake for 45 min. Remove from oven & pour off some of the fat. Spread the ketchup mixture over the top. Bake for 30 minutes more. Let stand 15 minutes before serving.

4 servings

Test Kitchen: Penne A La Vodka with Chicken

I’ve written posts like this from time to time before; never quite sure of whether it’s a worthy thing for me to blog about, but due to a few special requests, I’m at it again.  I consider myself a test kitchen.  I’m not a chef; not really a cook either.  But I DO cook.  I cook other people’s recipes.  And after six years of making at least three totally brand spankin’ new recipes each and every week, I dare say, I’ve gotten pretty darn good at pickin’ ‘em too!  Any recipe that shows up here is a very safe bet and worth your time in the kitchen.  I don’t publish the flops.  With that said… happy eating!

This recipe is credit of The Pioneer Woman, but I add chicken to mine.

Ingredients:

• 1 pound Pasta
• 1 lb. boneless skinless chicken breast (broiled in a pan with kosher salt & olive oil until juices run clear, 10 min?)
• 2 Tablespoons Olive Oil
• 2 Tablespoons Butter
• 1 whole Medium Onion, Chopped Finely
• 2 cloves (to 3 Cloves) Garlic, Chopped
• ¾ cups (to 1 Cup) Vodka
• 1 can (About 14 Oz.) Tomato Puree
• 1 cup Heavy Cream
• 1 pinch Red Pepper Flakes (I use way more than this… like 1 tsp. at least, but you know, “whatever makes your skirt fly up” – PW)
• ¼ teaspoons (to 1/2 Teaspoon) Salt (I use way more than this… like 2 Tbs. at least, but season to taste)
• Freshly Ground Black Pepper, To Taste
• 1 cup Grated Parmesan Cheese

Instructions:

Cook pasta according to package directions, being careful not to overcook.

In a large skillet over medium heat, add olive oil and butter. When butter is melted, add in chopped onion and garlic. Stir and allow to cook for two minutes. Pour in vodka. Stir and cook for three minutes. Add in tomato puree and stir.

Reduce heat to low and stir in cream. Allow to simmer, being careful not to overheat. Stir in red pepper flakes, salt and pepper.

Drain the pasta, reserving 1 cup of pasta water in case sauce is too thick. Add cooked pasta to the sauce, tossing to combine. Splash in a little water if it needs it. Stir in Parmesan cheese.

Pour mixture into large serving bowl. Garnish with more Parmesan cheese.

(Hopefully) The Last MRI

Ariana had another MRI this morning. Her seventh since birth. That’s a lot of brain imaging for such a little girl, and I’m not even counting her CT Scans. This MRI was ordered by her hematologist to establish a post-treatment baseline after her seven months of Coumadin therapy (blood thinners) as an attempt to disintegrate the (possible, hypothetical) blood clot in her brain that first appeared on an MRI January 27, 2010. Ari was an exceptionally sweet patient as usual. She didn’t fuss at all – before or after the treatment. We will get the results of her MRI, *fingers crossed* this week, and we’ll be able to stop the Coumadin (yea!). I’m expecting no changes since the first MRI, because the second MRI showed no progress or change in the clot for better or worse, and because I was never convinced there was one in the first place. But it was worth a shot. Just in case there was a clot and it was real and could have really harmed her. One less thing to feel like a failure about. And that’s a good thing.

La la land…

The angel awakens.

The hospital’s last steps before discharge. Done and done!

Typical Tuesday Morning

Tuesdays may officially be our busiest day of the week at this juncture in our lives right now.  Busy but fun.  Sweaty, hot, and hard… but, yes, fun too.  Last Tuesday, we dropped off Gabe at preschool at 8:30.  We got home just in time to pop some bagels in the toaster and head out to the garage for Power chair training at 9.  Ari has made true improvements with her driving skills.  We no longer have the joystick anymore, because we never did really get very far with that.  She had some issues with understanding directionality, but she also had her gross/fine motor issues working against here there, because her left arm always tends to want to “pull” left.  So, even when she wasn’t intending to, she would veer that way.  We use buttons or “switches” instead of the joystick now.  Three, separately colored, big buttons, Velcroed to her tray.  As you might guess, one moves her forward, one left, and the other right.  If she presses forward and a direction at the same time, she can move on a diagonal.  I had my reservations about switching her to the buttons, but she (and Gail, our trainer) both proved me wrong.  And I am happy to be proved wrong when it comes to this!

Especially recently, Ari has been adjusting her direction in order to head to where she wants to go.  She is also getting a lot better at approximating her proximity to her target and inching towards it gradually as she nears it, rather than plowing full speed ahead and crushing our toes the way she used to.  All of these skills are prerequisite to her passing her drivers test and getting a chair of her own.  As it stands, we have done 11 training sessions.  We have only one left!  We are really trying to get qualified to get her 12 more hours of training through DDD (Division of Developmental Disabilities), which would be what hopefully cements these skills for her, but it’s still very tentative right now. 

We have little exercises and games that we play with her to encourage and facilitate the development of her skills.  For instance, we let her “go shopping,” which is where she gets to carry around a shopping bag and fill it up with dress up clothes when she reaches us.  Ari loves clothes and container play (filling & emptying items from containers or bags), so getting two in one is playdom at its finest for her.  I also bribe her with bites of fruit and of blueberry bagels with honey nut cream cheese.  We read to her out of books and let her turn the pages.  We have her catch me so she can give me a tickle or get a ball off a cone in order to throw it and watch me make a silly production out of retrieving it.  On really hot days, she might aim to reach my spray bottle filled with cold water, so she can get sprayed, or better yet… spray me. We let her run into towers of stacked, empty boxes so she’ll learn what happens when she bumps into something. Jake lets her take him on walks and decide where they head.  All this to make it a fun and motivating and, above all, an educational experience for her when she gets into the chair for up to an hour at a time when it’s 115 degrees out.  It isn’t easy – for us or for her.  But, it’s important, and we try our best.

Of course, little Bellarina, Bella of the Ball, insists on dressing up in Ari’s “shopping” loot each and every time we do power chair training.  She doesn’t mind the extra layers of floor-length polyester, um… I mean, taffeta, and the crushed velvet slippers on her feet when her hair is already at the point of completely sticking to her face from sweating so much.  Ah no, that’s just the price of beauty.

Ari loves drinking from an open cup right now.  She can sometimes do it, but she usually makes a crazy mess that I have to clean up every time she attempts.  I let her try anyway… not because I’m wonderful and idealistic and think she should be taking all her liquids independently from an open cup right now.  Just to avoid a huge melt down every time her brother and sister demand an open cup.  She loves cups so much, in fact, that I get to use them as positive reinforcers in her power chair.  Even when they’re empty!

We ask Ari to point where she wants to go, before pushing a button.  This helps her locate the appropriate button to push in order to get there.

Almost there!  Man, independent mobility is exciting!

Miss Gail, our creative, persistent, and resourceful trainer loves my little girls!

Right on the heels of power mobility training is OT.  We were (and still are) so sad to have lost our wonderful OT, Miss Becky Huppert, to preschool scheduling conflicts.  But we got so lucky that we were able to find such a great OT to take her place.  Our new OT is also a Miss Becky, and she is fun and cheerful and warm and, of course, Ari loves her already.  OT is no longer home-based for us like it has been Ari’s whole life up till now.  We go to a facility called Lauren’s Institute for Education (LIFE), and it is a wonderful place full of fun and exciting obstacle;, new challenges for Ari that are way above and beyond what she’s gotten bored with at home.  She’s old enough and mature enough now that she can appreciate these types of experiences outside the home.  And I’m happy to do it for her, even if it is an inconvenience at times.  Bella and Gabe don’t hate it either. :)

Over The River… (Day 3)

Better late than never.  Day 3 in Holbrook, which would be last Sunday, we moseyed around; more enjoying the morning.  And what a beautiful morning it turned out to be too.  No surprise there, given the last two days we’d experienced.  Uncle Ryan & Aunt Chantelle’s family had tentative plans to go to church, but never did follow through on those… much to our delight in getting to spend our last few hours with them. 

We got to pet their bunny rabbits, and the kids even got to watch the bunnies… um, be bunnies? If you know what I mean.  After getting all dirty with the rabbits and the chickens and the garage, they headed back and got all sudsy clean at a bath party.  Three or more people in the tub at one time and we call it a bath party ‘round these parts.

Uncle Ryan wrestled the rabbit and the rabbit nearly won.  Poor Ryan was left with a battle wound to remind him not to mess with his rabbit stud.

These days are the kind to remember.