Confessions of a Sassaholic

Dr. Mackenzie

2011-07-31T11:18:00.004-04:00

Mackenzie, like most kids, is a total pretend-o-holic. She really likes cooking and mommying (like my new word), and she especially likes doctoring. She has a doctor's kit that she has slowly, and surreptitiously, managed to add real supplies and instruments to. She's a particular fan of walking around with a stethoscope across her neck/shoulders. It's fitting, I suppose. It does make me wonder how many kids with complex histories grow up to join the medical field in one way or another... or perhaps social work. Personally, I don't care. She can be a crazy cat lady librarian, glass artist, or something more unconventional/aberrant, as long as it makes her happy.

Anywho, here's a pic from her doctoring adventures yesterday. She was focused on feeding her patients, bringing Andy, Frannie, and me cans of Compleat. She's a sweetie.

Homemade cake pop

2011-07-27T16:55:00.000-04:00

D-E-Licious
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Ten bites!

2011-07-15T17:56:00.002-04:00

Look who ate 10 bites of yogurt, earning 10 stickers!

Oh yyeeeaaaaahhhhh. Woop woop!!

We'll be focusing on yogurt for the time being. Once she masters that, we'll move on to more textured purees again. She has a lot of trouble with purees, but she does pretty darn well with the yogurt. Atta girl. :)

I've got nothin'.

2011-07-11T13:53:00.004-04:00

I don't have anything in the way of interesting to blog about, so here are a couple goodies. The first is just a random bit of artistic flare. After at least a month of being on a pseudo sabbatical, my creative side is finally coming back. ((Yay!)) The second is a really cute video of Mackenzie playing Simon Says last night at bedtime.

Summer cleaning? Sure!

2011-07-03T12:33:00.010-04:00

I spent a few hours this weekend hiding medical crap. Okay... so maybe that didn't quite come out right.

I was actually going through Mackenzie's room and making it look more like a little girl's room as opposed to having medical stuff all about. I managed to find a place for most if it in her closet, although I still need to go through it and ditch the trach supplies. I ended up putting her pulse ox, oxygen tubing, and nebulizer under her bed. When she's sleeping, we pull out the pulse ox and place it on her Dora step stool at the foot of the bed. Well, we move it so it's visible from her doorway. I still want to get a red hamper, although I'm not quite sure where to put it.

Anywho... here are a few pics. :) As always, you can click to enlarge.

If you want to see what her room looked like before, you can check out the Toddler Bed post. I didn't include pictures of her armoire in that post, but you can click here to see a picture of that side of her room. The towers of supplies and miscellaneous nursing goodies are now in her closet. That picture was taken before the first revamping when we put up her toddler bed, but it really hadn't changed much. Instead of stuffies on the top, there were chux pads and a box of 60cc syringes. The shelves held her neb treatments, pulse ox probes, gloves, and random other.... stuff. :)

Le Sigh

2011-07-02T14:53:00.000-04:00

She hasn't turned 3 yet and she's already getting pulled over.
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Low-Carb Macaroni and Cheese

2011-07-01T12:41:00.004-04:00

I was recently diagnosed with a syndrome that took 12 ~~blissful~~ years to nail down. In addition to new medications, I am having to revamp my lifestyle to that of a low-carbohydrate diet. I’m a total carb-a-holic. It hasn’t been easy, to say the least. But! I recently discovered a brand called Dreamfields that is a low-carb pasta option. It’s still not something I can eat routinely, but as a treat once or twice a month, it works well. So here is a recipe I happened to find for low-carb mac ‘n cheese. I was never a huge fan of macaroni and cheese until I was diagnosed. Then, suddenly, all I wanted was macaroni and cheese and lots of it. Isn’t that just how things work out? ;)

The recipe below makes one 12 x 9” casserole dish comprised of approximately 12 servings, depending on how you divide it up. That equates to just under 6 grams of carbohydrates but a little over 2 grams of fiber. If you buy into the idea of net carbs, which I’m personally on the fence about, that would make 4 grams of digestible carbs. I have read rumors, though, that if you overcook the pasta, some of the “hidden” carbs are somehow leaked back out. I obviously don’t know how true that is. As for calories and fat, that's really going to depend on what type of cheese you use.

In any event, servings freeze well in air-tight containers. Just thaw in the fridge and reheat. :) I baked it last night and I'd say it took about 45 minutes to prepare and cook. I let it cool for about about 1-1/2 hours before freezing in serving-size bags.

Low-Carb Macaroni and Cheese

Ingredients
1 box (13.25 oz) Dreamfield’s elbows
4 cups shredded low-fat cheese (I used 3 different times of cheddar, but I think Colby-Jack would be good, too.)
2 eggs
2 tsp dry mustard mixed in 1 TBS hot water
1-1/2 cups milk
1/4 cup finely grated parmesan cheese
Salt/Pepper to taste

Instructions
1. Preheat oven to 375˚F and lightly grease a 9 x 12” casserole dish.
2. Bring a large pot of salted water to a boil. Add pasta, bring back to a boil, and reduce heat. Allow to cook for 10 minutes. Drain pasta and set aside.
3. Whisk together mustard, hot water, eggs, and milk in a small mixing bowl. You can add salt and pepper to taste, although I typically only add a little bit of pepper to anything I cook. Salt is the debbil. ;)
4. In the large pot you used to boil the pasta, combine pasta and milk mixture. Add the 4 cups of cheese and stir.
5. Pour macaroni mixture into the casserole dish, pressing down to evenly distribute. Sprinkle parmesan on top. Bake uncovered for 30-35 minutes. The cheese should all be melted, and the cheese on top should start to brown slightly.

Poor Pup

2011-06-29T09:54:00.003-04:00

Frannie actually seemed to enjoy the ride... er, after the initial scare of Mackenzie almost tipping her over. She didn't want to get out of it after Mackenzie was done pushing her around. She's a good pup. She puts up with a lot. :)

Feeding Daddy

2011-06-23T23:08:00.002-04:00

It's 11 pm... what am I still doing up? I haven't a clue. I somehow managed to catch a cold in June, and it has my sleep schedule all sorts of funkified. Sssoooooo... I thought I'd share a hilarious video of Mackenzie feeding Andy some ice cream. To be more accurate, he was the canvas and the ice cream was her paint. I haven't laughed so hard in ages. I love that kiddo... especially when she starts wagging her finger at him. (She must have gotten that from the Wiggles? That's the only show/person I know that actually does the finger wag.)

Enjoy!

Sunday... sweet Sunday.

2011-05-22T20:39:00.003-04:00

Andy and I trade off on taking care of Mackenzie during the weekend. Since I work Saturdays, Andy gets to field Mac that day. Diaper changes, feedings, baths, nebs... whatever needs done, it's Andy's job. That leaves Sundays for me. It works well with keeping a healthy balance. Our former day nurse mentioned her and her husband did this with their twins, so we adopted the practice.

Our Sunday morning ritual is doing our nails. Well, really it ends up with me doing Mackenzie's and getting the polish off mine... and then I wait until she's asleep to actually paint them. But anywho... I'm not sure if I mentioned it before, but we found this wonderful nail polish for kids. It is Hopscotch Kids and is a nontoxic, water-based nail polish that dries within seconds. The downside is that it peels off quickly, but it really is fabulous polish for the little kidlets. Mackenzie enjoys getting her nails done and will even ask me during the week to do them (in "Mackenzie speak," of course). We put on a nice cartoon, and she splays her fingers out on my lap like she's at a salon. She even insists on having her toenails done. I think she loves how colorful it looks.

I've also started baking on Sundays. Most know there are only a handful of dishes I can make, although to my credit, I am a master at them. General cooking just isn't something that comes naturally to me. Baking is a whole new ballgame. I love to bake, especially from scratch. My 2 current favorites to make are an apple and cinnamon breakfast cake (think of a bake of cinnamon and freshly chopped apples topped with a sprinkling of cinnamon sugar on top) and a Nutella pound cake (exactly what it sounds like - a pound cake with Nutella swirled in). Thank goodness the guys Andy works with are always open to homemade sweets. :)

I think that's all for now. I'm going to do the Nutella pound cake later in the week, so maybe I'll take pictures and post the recipe. Stay tuned!

Adjusting

2011-05-18T23:19:00.004-04:00

We are settling into a good routine over here, and everyone knows how much I love routines! (No... really... I do. I can't live without them.) Mac's up between 6 and 6:30 am; she helps me make the beds, i.e. stands and points and/or yells; she gets her morning water and I hop in the shower; and the CNA (described below) arrives at 7am, at which time I start work. The CNA leaves at 3 pm, I give Mac a bath, and we hang out until Daddy gets home at 4. Bedtime is at 7 pm. We do her nightly neb and read 2 books, do her feed and meds, brush her teeth, and she's in bed no later than 7:20. Rinse and repeat the next day. :) It works out beautifully (most days).

Adjusting to life without night nursing has actually be fantastic. I really don't understand why we kept it for as long as we did. Andy and I were extremely nervous things would not go well, as Mackenzie is both afraid of the dark and afraid of being alone. Adding in Mommy's fear of not hearing the pulse ox while sleeping, we just had a negative view of the future. Much to our surprise, things have been terrific. First step was ordering a new video baby monitor. (Minor side note: For those interested, I went with the Summers First brand, this model in particular, and have been quite pleased. This was monitor #3 for us, as well as our second video monitor, and I wish I had ordered it first instead of dropping money on the other sub par monitors.) Next step was having a conversation with Mackenzie. I believe I mentioned previously that it is considerably easy to underestimate how much a child understands when they are notably delayed in terms of expressive communication. Often times, I'm shocked by what Mackenzie knows and understands. When putting Mackenzie to bed one night, I explained that Mommy was going to go to bed as well, in her and Daddy's room, but that if she needed anything she could make a noise and I'd be there for her in a flash. I didn't expect that conversation to go well - who does with a 2 year old? - and was prepared for a battle. To my surprise, she tested me twice by making noises to ensure Mommy would, indeed, hold true to her word... and then she fell asleep. And it has been smooth sailing ever since. Previously, Andy and I would sit for at least an hour waiting or her to fall asleep and then would stumble to her room anytime she happened to peak to make sure we were still there. As for me sleeping through alarms, it hasn't happened so far... that I'm aware of. ;) I actually seem to wake up with the slightest rustling. I joked with Andy in the past that I have no motherly instincts to speak of (this is very true, I genuinely don't), but apparently they are kicking in a couple years late. :)

We have been fortunate enough to qualify, and receive, a CNA to help with Mackenzie's busy feeding schedule. Doing feeds overnight via the feeding pump is my least favorite option. We frequently had problems of "feeding the bed," where the medicine port would pop open and rather than Mackenzie getting fed through the night, the bed would get to enjoy a hefty amount of EleCare. Despite many attempts to prevent it, this happened at least 2-3 times a week. Overnight feeds also dramatically increase cramping and gas pains, which to me is an even bigger problem. This, of course, means we have to squeeze in her feeds during the day. Because of Mackenzie's GERD and Nissen fundoplication, she can only tolerate 4 ounces of formula/water/juice at a time. If she gets anything more, her reflux is worse, and she spends much of the day retching and in an all around awful state. Mackenzie receives 38 ounces of EleCare and 12 ounces of water and/or juice a day to stay hydrated and maintain nutrition and weight gain. She sleeps 13-14 hours a day. That gives us all of 11 hours to get in 50 ounces. Did I mention she only tolerates 4 ounces at a time and takes an hour to digest it? Essentially, we gravity bolus 4 ounces every hour she is awake, and then sneak in the leftover formula while she is asleep. It keeps us busy but works out okay. Having a CNA available while I work from home is wonderful. It helps me keep my sanity. I work Tuesday through Saturdays, so our lovely CNA is here Tuesday through Friday. Andy and I tackle the weekends together, and Mondays are the Mommy-n-Mac days where we're glued to each other's hips. :)

Ssssooooo I think this is a pretty long entry. I'll stop here before I bore everyone to tears. ;)

Before I do, though, Wednesday was Andy's birthday. (It's technically Thursday now, although I don't know what the date stamp on this entry will be.) As a special surprise, I taught Mackenzie the birthday song. I tried to get a good video of it, but anyone with a toddler knows that is impossible. Here was my best attempt:

Subtitles:

"...birthday dear..." (loud music) "Happy birthday..." (laughing) (/loud music)

"Happy birthday dear Daddy."

Hard to keep up!

2011-05-04T20:02:00.002-04:00

Goodness... it's really hard to keep up with things these days. Work has kept me extremely busy, which is ironic since we're in a downswing.

Mackenzie is doing great. She's adjusting well to being a nose breather. :) Silly me thought decannulation meant the end of trach care. Nopers. We still do stoma care. We actually do it more frequently now than we did when she had the trach. (How does that happen?)

We are currently working on getting her transitioned to the Early Intervention Program for when she turns 3. We're not entirely sure what services she will qualify for, although my understanding is it will either be solely speech therapy or possibly preschool. Andy and I haven't decided which we would prefer, so we're waiting until the final choice to make a decision. The classrooms for developmentally delayed preschoolers are based on 16 kids to 2 teachers. This makes me very weary when there is such a wide range of delays and needs, especially when Mackenzie won't have one-on-one care (i.e., nursing). I think we have decided to do private speech therapy regardless. She will most likely respond differently to the different speech therapists, so I think she would benefit from having two. If it becomes overwhelming, then we can always drop whichever one is helping the least. We are also looking into voice therapy sessions through UNC to improve the quality of her voice, although we may have to wait until she's older for that.

My latest obsession has been Italian cooking. We always joke that I tricked Andy into falling in love with me over my baked ziti. ;) (Little did he know that was one of the few dishes I could actually cook!) I recently attempted manicotti, and it turned out really great. It's definitely one of those dishes that you can play with, depending on what you're in the mood for. I think the next time I make it, I'm going to throw in some roasted red peppers and roasted mushrooms. I'm planning to try Parmesan encrusted chicken with red pepper sauce and rigatoni campagnolo this weekend. :)

I think that's it for now. Next time, I promise pictures or video. :)

Babbling update

2011-04-26T05:14:00.003-04:00

Things have been going well. :)

Mackenzie was decannulated last Wednesday. She’s breathing fine and starting to find her voice. She’s not happy about wearing a nasal cannula when she’s sleeping, but she isn’t fighting quite as much about it. She gags, retches, and refuses to close her mouth or swallow when we first put it on. I can only assume she doesn’t like the flow? It’s very minimal – I don’t feel much of anything when I put it on to show her it’s okay, so I suppose she’s just extra sensitive. She’s also not thrilled about neb treatments. She “argued” with me this morning over the facemask. Mackenzie kept shaking her head no and point to where her trach would be. She’ll get the hang of it. :) Mac really enjoys sneezing, though. How odd, eh? She sneezed with the trach, but I suppose it is a different sensation now. It is absolutely adorable to hear her sneeze and then crack up laughing.

Emotionally, Mac isn’t so great. Before decan, she was becoming more anxious. If there was the slightest noise outside, she’d cry and sign “scared.” After a few days in the hospital with strangers who kept touching her, you can imagine that it has become worse. I love the extra cuddles, but it makes me uneasy that she is afraid to have me out of eyesight.

Personally, I’m having an interesting time coping. I didn’t think I’d feel this way, but I genuinely miss the trach. Don’t get me wrong, I don’t miss the trach care, suctioning, etc. But I miss the look. Does that make sense? Mackenzie has always worn the same trach ties, same trach, same HMEs, same dressings, etc. It was a natural part of her, in my mind. I’m just startled at the new “look” I suppose? I’m not sure how to explain it. For the most part, I don’t notice the trach is gone… but when I zero in on her neck, I miss the old Mackenzie. The best I can think to describe it is when you take your longhaired kid for a haircut, and she comes out with a bob. You miss the hair and the look. That’s what I miss, and I never thought I would.

We will lose our RN/LPN nursing in the next week or 2, which will make our nights very interesting. Mackenzie’s used to having someone in the room with her when she sleeps. We’ve debated the options and still haven’t come to a firm decision on what will work best. I’ve thought of moving a twin bed into her room and sleeping in there, and Andy thought about moving her bed into our room. I *think* we are going to leave her in her room and just rely on the baby monitor. We’ll probably take turns getting up when she cries. At the advice of some other special needs moms, I’ve started teaching Mac to take her pulse ox off to get out of bed. There is plenty of oxygen tubing, so she would theoretically be able to come get us if she gets frightened.

And, of course, this brings up the pet option again. Andy and I had originally decided to get her a kitten. After a couple trips to shelters and pet stores, we realized it wasn’t “kitten season” and decided to wait a few months. Now we’re debating a puppy. I’m not a dog person. I always say that I hate dogs, but really I just don’t like /most/ dogs. (Make sense?) Andy and I hashed over the idea of getting her a puppy to sleep with… the idea being that she’d be less scared to sleep by herself. We still haven’t settled our minds about that. Andy and Mackenzie would love a dog and I wouldn’t mind, but they’re a big hassle, too. We’ll see.

But anyway… my mind is all over the place. I blame the lack of sleep. :) Thanks for "listening" to me babble.

Happy Easter!

2011-04-24T12:13:00.001-04:00

While we're not Christians, we wanted to wish everyone who celebrates a happy Easter. :)

SURPRISE!

2011-04-20T20:41:00.002-04:00

I bet ya didn't see that coming, did ya? ;)

Hello again!!

2011-04-11T08:17:00.004-04:00

So much for saying I'd post earlier, right?

Things have been going well on our end. Mackenzie is doing well. She's vocalizing much more. Although it is a bit difficult understanding her without context clues, we're doing okay. ;) She has discovered the art of counting to 10 and has been running around counting everything in sight. She even counts cars while we're driving... and then argues with me because she'll count a sign as a car. Stinker. (At the bottom of this post, I've included a quick video of her counting.)

We have a very big event coming up on the 20th, but I'll keep our fellow bloggers in suspense. (If you happen to already know, don't spill the beans!)

Anyway, I'm really at a loss of what to say, so I'll stop while I'm slightly ahead. Here are a few recent pics and the video I mentioned. Enjoy!

Update to come

2011-03-19T22:31:00.001-04:00

Things have been hectic here. I'm sorry! I plan to post an update in the next day or so. Stay tuned!

Cookie monster.

2011-03-01T12:19:00.000-05:00

We are planning to legally change Mac's name to Cookie Monster. Too bad she doesn't actually EAT the cookies.
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Book lovers!

2011-02-21T11:35:00.004-05:00

Book organizing day.

I've mentioned before that we're a family of book lovers. We really are. When shopping, Mackenzie is more interested in books than toys. One of our favorite stores is Barnes & Noble, and she could spend hours browsing books if we let her. She's even started reading while walking. (For her, reading is looking at the pictures and moving her mouth like she's reading.) While cleaning, Mac will trail me through the house with a book and tell me what it's about. :) Thats exaggerating a bit since her verbal vocab is extremely limited, but it's quite cute anyway. Lots of noises and "babbling".

I recently went through her books and and trashed/gave away books she had outgrown or totally destroyed. Even after getting rid of 20-30 books, Mac's current book count is 104; not counting her sticker activity books (love those, btw!) and coloring books. I think we tend to get her a book anytime we go to a store with children's books. I'm of the mind that kids can't have too many books. :)

Audiobooks have become my new obsession. Lately, I always have an audiobook on queue in the MP3 player and an e-book on my kindle. The audiobooks are terrific to listen to when I'm moving around and having to multitask. It makes cleaning slightly more enjoyable - haha! The only problem is that some of the performers can ruin a good book by talking too fast (or too slow), trying to throw in weird accents, not distinguishing between characters, etc. I wonder if writers have ever considered performing their own audio books?

Anyway... everything is going well. Andy's enjoying the last day of his 4 day weekend. We had plans to go kitten shopping for Mackenzie, but Mac's pretty sick. We'll try to work it in next weekend. We've debated about getting Mackenzie a kitten for months and finally decided to go for it. This weekend, overall, didn't work out quite as we had planned. The weather is perfect to go to "farm", as Mackenzie calls it, but we don't want to push her. Her O2 is low and we're suctioning some bloody secretions. I love tracheitis. (Note the sarcasm.)

EEG Rewind

2011-02-15T07:55:00.005-05:00

Rewind. <<

Mackenzie had her ambulatory EEG placed last Wednesday. Since Daddy couldn't get out of work, Mommy made a solo trip... which meant that everything that happened was Mommy's fault, and Mommy ended up in the dog house. And I stayed there until Saturday, when it came off.

What I really hated was how despondent and morose it made Mackenzie. She wasn't interested in anything and didn't want to so much as raise her arm most of the time. If you picked her up, she just wilted and relented to whatever you had to do. It was really heartbreaking. Add in that she refused to smile or play with me, and I was just as depressed as she was.

Andy and I headed to UNC together to have it removed Saturday, and she was immediately back to her spunky, feisty self. On Day 3 of the EEG, she was starting to turn the corner and smile more, but there was a huge difference when it came off. She has been extra feisty, come to think of it. Perhaps she's making up for lost time. ;)

Anywho, here are some pics for your viewing pleasure.

Enjoying the sunshine!

Saying "ROCK ON!" She does the devil horns pretty well. :)

Double nose pick? Don't mind if I do!

Happy Valentine's Day!

2011-02-14T10:12:00.002-05:00

Mackenzie enjoying one of her Valentine's presents - a doll that she calls "girl".

I have much to update about, but haven't had the time and/or energy to do it. In the meantime, I hope everyone has a terrific day. :)

Celebrating a Year!

2011-02-12T09:23:00.007-05:00

Today is Mackenzie's 1 year vent-free anniversary.
Woop!

A full year of not changing ventilator circuits, not cleaning water chambers, not hearing and trouble-shooting vent or humidifier alarms.... ooohhhh what a year. :oD Heck, it has been a full year of not trying to navigate a loaded down double stroller! Don't get me wrong, I loved (and will always love) my Kolcraft, but boy is it nice to whip a tiny stroller around corners and not worry about who might get plowed over on the other side. ;o)

It hasn't been an easy year. We went through the fears of Mackenzie having to go back on the vent while sleeping because of central apneas. After genetic testing, labwork, and additional sleep studies, we were able to use supplemental oxygen to combat the effects of the apneas. Mackenzie made it, and we're proud of her. :o)

Cheers to a year of changes and progress. While we appreciate everything that 15 pound box of life gave us, we're happy to be vent free and down a piece of equipment. ;o)

Air compressor, you're next!

Aaaannnnddddddd cue the happy tears. :o)

La fin de l'ère.

Sunglasses

2011-02-06T10:49:00.001-05:00

We went shopping for sunglasses at the mall yesterday. Mackenzie didn't have fun at all... can't you tell?

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Chilly!

2011-02-03T11:44:00.001-05:00

We were literally wearing t-shirts yesterday. What in the world is up with this weather?!
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Bitter Betty

2011-02-01T06:57:00.006-05:00

Speech therapy and community based rehabilitative services therapy (CBRS or "play" therapy as we like to call it) today. Speech at 8am, CBRS at 2:30. Then training a new nurse tomorrow, followed by King of Hearts monitor placement on Thursday. (Can anyone else hear me grinding my teeth?)

I'm just in Bitter Betty mode this morning... perhaps because I kept receiving calls from a nurse who couldn't find our house last night past 10pm, when everyone knows I'm down by 9. It's not her fault by any means, and we're grateful she could come orient (I say this as I was too grumpy to get out of bed to actually meet her and ended up passing the phone to Andy to "deal with it"), but it aggravated me none-the-less.

Sometimes I just feel... intruded upon. Like this big medical army has decided to massively invade my life and dictates what we can reasonably do on any given day. "Nope, can't go to the library for Story Time, we need to get to [insert crap here]." "Nope, can't go out for a stroll because we have [insert crap here] in X minutes."

Now, rationally, I understand that it's no-one's fault and that the people involved in Mackenzie's life are there to help. I can't blame them for how I feel. I get it. But that doesn't make me any less frustrated as a whole.

The closest we've ever been to going a week without "outside interference" from a medical standpoint was when we went to the Biltmore for Mac's 1st birthday. It wasn't quite a week, but goodness... it was glorious. To be able to just go with the flow and enjoy ourselves as a family... *sigh* I think we need that again. Maybe not the Biltmore, but a family vacation away from everything. No nurses. No therapies. No clinics. No doctors. Just us and whatever havoc we can drum up.

One can dream, right?

Saturday at the Ranch

2011-01-30T06:24:00.007-05:00

There is a "Ranch" that is only about 15-20 minutes away that Mackenzie is absolutely in love with. It has acres and acres of animals, both farm and exotic, that you can feed by hand. Ducks, turtles, sheep, goats, llamas, a bear, alligators, bison, you name it, they most likely have it. They even have a couple cute little mara that I had never even heard before. Since Mackenzie did so well with her appointments this past week and we still have many more appointments, tests, and procedures to go, I suggested we hit the Ranch with Grandma (who had never been).

The weather was beautiful and apparently a couple other families had the same idea. I've never seen the Ranch crowded, but I'd imagine it can get that way during the spring. Anywho, we asked Mackenzie if she wanted to go to the farm, and that's all she could sign the whole way... farm, farm, farm, yay! :D I think she was the animal whisperer or something this time around. There was a very friendly llama that kept following Mackenzie around, as well as a flock of ducks. The llama was very gentle and always made sure to keep a few paces away from Mackenzie, but seemed interested in her none-the-less. I think it may have had something to do with the tasty bread Mac kept in her hand.

Even the bison seemed friendlier than usual - not to say they're ever unfriendly, but they enjoyed a few good scratches on the nose. They were also licking more than I recall the past few times we went. FYI: Being licked by a bison is a little unnerving. They're such large, powerful animals... I can imagine all too well the jaw power that could crush your hand with a tiny nibble.

There was a pen of pregnant goats didn't mind being petted and scratched. (To be honest, the goats are my favorite part, although Andy fell in love with what I have to say was the most beautiful llama I've ever seen - not that I've seen many.) Mackenzie apparently thought it was time to teach the mommy goats how to do oral motor exercises, so she'd bribe the goats with bread and then do zigzags down their cheeks. I'm not quite sure how easy that will be for the mommy goats to do with their hooves, but I'm positive they found it an educational experience. ;)

Just before leaving, we paid a visit to the donkey and horse. The horse must have liked my Herbal Essences because he kept nuzzling me, sniffing my hair, and licking the back of my neck. He was a big ole' cutie, and I really must remember to bring him an apple the next time we go.

Tomorrow... tomorrow... I love ya, tomorrow...

2011-01-26T22:11:00.004-05:00

I'm sorry, but Annie had no idea what she was talking about with that song. She's way too damn chipper for me. Or maybe I'm just cranky and sleep deprived. ;o)

Busy, busy, busy, stress, stress, stress. That's a good summary of how things are going right about now. :oD

I'm actually at UNC with my MacAttack. Mackenzie had 4 appointments today and another tomorrow, so it made more sense for us to stay overnight in Chapel Hill. Unfortunately, Andy wasn't able to come to the appointments because of work obligations. I would say us girlies had a great time without Daddy's supervision, but really... it was just a draining day.

It started with a 4 am wakeup to be on the road by 5:30, which turned into 6. Traffic cooperated, and we managed to get to Chapel Hill with enough time to stop and freshen up before hitting the hospital madness. I really like having that extra bit of time, especially when the appointments were scheduled back to back today. Oddly enough, we actually didn't get behind on ANY of our clinics... which was terrific!

ENT started off our day at 9 am. We have the green light for decannulation (removal of Mackenzie's trach) this year. WOOHOO! He's going to do a bronch on March 24th and take a look at her airway. If all looks good then we'll be back shortly after to pull out the tube. If, for some reason, he has to do any lasering, then we'll come back a week later for a 2nd look, and then come back a 3rd time for the actual decannulation. Exciting!! I'm scared, I won't lie.... but I'm also really excited for Mackenzie (and us, duh!) I know she's going to love it. :)

Surgery clinic was at 10 am. We had some issues changing Mackenzie's g-tube in December - as in, I couldn't get it out - so wanted one of the nurse practitioners to take a look at it. As odd as it sounds, I could change a trach all day long and be fine. G-tubes, not so much. I think it's because I don't have much experience. We only change it when we absolutely have to, which is about ever 3+ months. Anyway, the change went fine. Most likely Mackenzie still had some inflammation let over from her gastritis when I went to change it, and that was the hangup. No routine follow up scheduled. :D Goodness, I love that! We'll just give them a call if we run into anymore problems.

Pulmonary clinic was at 11 am. Again, everything went well. Since Mackenzie has been vent free for almost a year, there's no reason NOT to decannulate. She does require oxygen while sleeping because of her central apneas, but she does well on 1/2 a liter. She desats every now and then, but nothing major. She's tolerating her nasal cannula, and we have the go ahead to put some flow behind it to get her used to "the real deal", so to speak. I really want to make this as easy a transition as possible for Mackenzie. :o) All i can think of right now is how ecstatic she's going to be when we pull her trachy. She *loves* having it out during trach changes.

Neurology clinic was at 12:30 pm. We've been concerned about some spells, which I think we're calling transient alteration of awareness if we want to get technical about it. I happened to get a video of one, so the nurse practitioner was able to see what was going on. It was a great appointment and really, really informative. The plan of attack is to do an ambulatory EEG for 72 hours to rule out seizures, MRI of the brain without contrast to visualize any possible malformations and that sort of thing (may help with figuring out the apneas too - that would be nice!), and to check ferritin levels the next time Mackenzie gets labs drawn to see if it might be some sort of vasovagal issue. Mmm mmm mmm... I love a good plan. :)

Tomorrow we have Mackenzie's first dental appointment. I'll be a Debbie Downer and say I am NOT looking forward to it. We've gotten her to the point where she doesn't fight her teeth brushing and she'll usually open her mouth wide on command... but with strangers? Not to mention it's going to be during her scheduled nap time. :o/ I really don't think our Show Me Your Smile (Dora goes to the dentist) book is going to do a lick of good. Boo! The evil bright side is that it should make her even more exhausted, which means she should sleep the entire drive home.

Friday we have an appointment with Mac's cardiologist to evaluate any possible causes for Mac's episodes from a cardio standpoint. He's a pretty thorough doc, so I'm expecting an EKG and echocardiogram, although I haven't talked to him personally. I plan to ask about a Holter monitor, but since the spells don't happen every day, a 24 hour Holter may not pick anything up anyway.

Monday is GI, but at the Raleigh clinic. My goal is to get a good plan and the green light for transitioning Mackenzie over to a blenderized diet and get her off formula. I think her body will do better on it. I also plan to go over the spells and see what we can do to rule reflux out. Mackenzie has a nissen, so an upper endoscopy would be great to visualize it and make sure it is intact. I really don't think it has slipped since Mackenzie doesn't vomit, but it's always a possibility. Our pediatrician recommended going back on Prevacid, and I doubt that will be a problem.

The following Wednesday, we come back to UNC for the ambulatory EEG and will go home. Then we go back Friday to get it taken off. Then, finally, we have the rest of February to avoid all the docs, picking up again March 9th a preop at UNC, March 21st for the MRI, and March 24th for the bronch. I'm going to see what I can do to get the MRI and bronch on the same day to avoid multiple bouts with anesthesia, but as long as we can get the MRI in before Mac gets her trach out, I'll be happy. If not, she'd have to be intubated, and I really do NOT want any tubes going in her airway so soon after decannulation.

I think that's it. Right? Right. I'm exhausted just thinking about it. BUT! We'll chug right through it just like we always have. Like I keep telling Andy, 2011 is our year. Only great things can happen. :o)

And with that, I'm off to bed! G'nite world!

(PS - I'm not rereading and editing, so ignore the errors.)

More 365, as promised.

2011-01-15T17:55:00.005-05:00

1.7.11
"I didn't order this!"
I was reorganizing supplies, something that happens less and less frequently these days, and Mackenzie thought a box of Farrell bags would be great to sit in.

1.8.11
Shop until you drop! Literally!
What's a Saturday without an all day shopping adventured followed by dinner at Mommy's favorite restaurant, Chili's?

1.9.11
Burka!
Being atheists ourselves, Andy and I are pretty open to whatever religion Mackenzie finds in her heart. I didn't think she'd start her path to self-discovery so soon, though.

1.10.11.
Snowball fight!
It snowed/iced... again. Andy hit the nail on the head when he said snow was much more fun when we were little.

1.11.11
Freeze Dance
Mackenzie's new favorite dance is the Freeze Dance. Thank you, Fresh Beat Band, for making my daughter even cuter.

1.12.11
Studiously coloring.
She concentrates pretty hard on coloring. I'm actually impressed she was willing to color with crayons as opposed to markers. Normally she's a marker fiend. Thank goodness for Crayola Washables.

1.13.11
Night night!
Since we've implemented the 2 book 'night 'night routine, bed time has been pretty easy!

1.14.11
Every monkey needs a banana toothbrush!
I'm becoming more and more impressed by this little baboon. :) She's recently put a halt to fighting us while brushing her teeth. Overall, she's becoming less and less orally defensive. I don't know what magically change other than age.

1.15.11
Violet scarf
Mac has a love for taking over Mommy's things. Necklaces and bracelets are her favorite, followed closely by scarves and shoes. She's definitely a girly girl. :)

I want to nap NOW!

2011-01-14T12:42:00.005-05:00

I'm a stickler about schedules. I like them, I think [most] kids do well on them, and it really makes things easier overall. I do give some leeway for extenuating circumstances. Nap time, however, is not something that typically goes off schedule for us. Mackenzie is promptly taken to her room at 11:30 every morning for nap time. She is always asleep no later than noon, the 30 minute time frame allowing for 1 or 2 nap time books, the first part of her "lunch", and general quiet time.

Today I was caught up in sending followup e-mails to potential employers. I lost track of time, and Mackenzie came and tapped my leg at 11:35. She signed "sleep" and pointed to her room. I asked her for "just a minute" to finish up my e-mail, to which she signed "dog" (to represent her book request, The Puppy Twins) and pointed to her room. I said, "Hold on, I'm almost done." She turned on both her oxygen concentrator and air compressor, clapped, and pointed to her room again. By the time I got her tights off, diaper changed, pulse ox and mist collar on, and started to bolus her lunch, her eyes were closed and she was off in Nappy Land. Sorry for taking too long, kiddo!

The reward chart has been made and will start on Sunday. *Exciting!* The categories are: 1) Vocalize (or attempt to vocalize) at least 1 word; 2) Combine 2+ signs; 3) Work on colors, counting, or classifying; 4) Read for 20+ minutes (thank you Nick Jr for drilling that one in); 5) Oral motor exercises; 6) Taste at least 1 food; 7) Brush teeth; 8) Help pick up toys and books before bedtime; 9) Use manners (ie: please and thank you); and 10) Wear nasal cannula for 3 minutes (which will continue to go up daily/weekly until she tolerates it enough to wear overnight). I think this will be a terrific reminder tool for Andy and me. ("Did we do her oral motor stuff yesterday?" "Yep!" or "Have we worked on the 3 C's today?" "Nope, let's sit down and do colors now.") She gets a sticker for each completed "task" (using the word very loosely), and at the end of the week - Saturday night - she gets to pick a book from the reward trunk.

In other news, I'm playing the waiting game for the gazillion resumes I've sent out over the past month. It's the slow season for medical transcription, and the wait is kkiilllliinngg me. Seriously, exaggeration aside, I baked 5 batches of brownies the night before last... from scratch. I sent the bulk of them to work with Andy, but after the 3 tiered New Years cake I baked them a couple weeks ago, I'm sure the Wellness Committee is going to put their foot down on the goodies I send. ;) I think I'll try vanilla cupcakes next.

PS - I'll most likely get around to posting the 365 pics sometime this weekend. Just keep checking back. :)

Scheduling

2011-01-11T11:38:00.003-05:00

I recently managed, with the help of a couple wonderful specialists who were able to fit us in at the last minute, to schedule all Mackenzie's January UNC appointments within a 2 day time frame - ENT, surgery, pulmonology, and neurology one day; and dentistry the second. There is the exception of GI clinic a little later in the month, but that's scheduled at the Raleigh clinic, so I suppose it doesn't count. We'll say it doesn't. Now, on one hand, the compact appointments mean less traveling, but on the other hand, they will undoubtedly be a couple of arduous days with an off-my-routine-schedule-and-therefor--VERY--testy toddler. And since Andy will be starting his new position that week, it will be close enough to impossible for him to get the 2 days off that we'd rather not test the waters. I'm exhausted just thinking about it. BUT! Without Daddy present to make discouraging noises - you know, those deep, grumbly noises men tend to make when you spend more than 50 cents - that means Mackenzie and I can hit our favorite toy shop. ;)

On the topic of doctors' appointments and the docs associated with them, I have to say that we're really fortunate to have the team of doclings and nurse practitioners that we do. I trust their opinions and advice, and I trust them to do what is in Mackenzie's best interest. The latter is arguably the most important, and I've met a handful of doctors who fell short on that quality for one reason or another. We even drive to the country in a completely different county for pediatrician visits, despite there being a pediatrician on every corner in this town (not to talk disparagingly of the pediatricians in the area, just to say there are quite a few of them).

Switching gears, Andy and I are starting a reward system with Mackenzie. She understands the concept of being naughty and what behaviors fall into this category, and while I think it's important to set consequences for bad behavior, I also think it's important to give rewards for good behavior. We bought a small trunk to store goodies. We've yet to agree on a name for it, but so far it is the temporary home for several books. We had planned to hit a local teaching supply store to get some sticker reward charts, but unfortunately they were closed... the idea being that she'll get to put a sticker (her recent obsession) on the chart for doing X, and once she gets so many stickers, she can select something from the trunk. I think it'll work well. Or at least I hope it will.

Alright... I'm off to put Mackenzie down for her nap and start cleaning the living room. Joy!

Installments and Randoms

2011-01-06T21:14:00.008-05:00

I don't know if I have chronic fatigue in general or if it's taking me much longer to adjust to some med changes, but holy cannoli... I'm tired. Being such, I really have nothing to add this post. I just wanted to update the 5th and 6th installments of 365, and include a couple random photos I took earlier and had fun editing.

5/365
Cheetoh Tasting.
nomnomnom

6/365
Personal fave so far of the 365 series.
Doesn't she belong on the cover of Good Housekeeping?

And these two are just some randoms to throw in.

Andy's old fire fighter helmet.
If you enlarge, you might find some "extra" detail on the top right. It's my favorite part.

Taken of an 1888 publication of Thomas Moore's complete works.

Random fact: I have a passion for old books, both reading and collecting. I love the elegant writing style, and I love the antique "feel". Mackenzie's middle name comes from one of my favorite authors, Anne Bronte. I actually prefer her sister Charlotte better, but Mackenzie Charlotte didn't flow as well, so we settled on Anne. One of my prized possessions is an 1864 publication of Shirley by Charlotte Bronte. Well, technically she wrote under the name Currer Bell back then, but you get the point.

I couldn't decide.

2011-01-04T13:02:00.009-05:00

I know I said I wouldn't do daily posts of 365, but I couldn't help myself today. I also couldn't decide which pic I liked better, so you, my dear little followers, get a special treat - two pics for the price of reading one post! (As with all pics, you can click to enlarge.)

This first one actually made me cry while I was editing it. I happen to be more emotional today than usual, which can take partial credit. Originally, I had planned to get a picture of Mackenzie holding her sheep while sleeping. When I snuck in, armed with my trusty camera, I found her holding her mist tubing instead. I still thought it was a cute picture, until I went to edit it and out popped every scar on her hand. Thanks to numerous hospital stays and lab draws, I don't think there's a square inch of Mackenzie's hands, wrists, ankles or feet that aren't laden with scars. There are even dustings of them on her forehead and forearms. Every time my eyes focus on them, I try to remember that each one was for more or less a great cause. I just wish they weren't necessary to begin with. I'm certain they'll be less noticeable as she grows, which is a great consolation.

Now the second pic makes up for the tears shed by the first. It's a typical Mackenzie pic - Sheepy always in the forefront. The only thing she's missing is a book, which happens to be at the foot of her bed, out of of the frame of this particular picture. Her current naptime/bedtime fave is Dora the Explorer Puppy Twins. It's a bit odd since Dora doesn't make the top 5 list of Mackenzie's favorite shows. I will say, however, that Dora books are terrific. We have a total of 4 (technically 5, but Mackenzie doesn't know about the 5th yet) and they all have at least one page that is interactive. The Puppy Twins book has a page where the child matches all the twins. Mackenzie usually giggles at herself while she pretends not to know. Stinker.

Snow and cooking.

2010-12-28T09:38:00.005-05:00

For the 3rd day in a row, snow is on the ground. I think the records show we had 8.5 inches of snow on Sunday, and I believe that to be accurate. When I went traipsing about, there were pockets of 12+ inches (commonly called a foot - haha - but it didn't sound right). We opted not to let Mackenzie out the first day because she's been so ill. Yesterday, while her fever was taking a much needed vaca, I bundled her up and took her to get some fresh air. Since the snow wasn't freshly fallen, it was a bit hard for her to walk in, but overall I think she liked it. She kept signing "snow" and pointing everywhere. She thoroughly enjoyed helping Andy salt the driveway.

Mackenzie and Daddy enjoying the snow

Today, we're hanging out in the house again. I had to cancel her speech therapy session because of the illness of unknown origin that has me really scratching my head. Definitely a bummer since Mackenzie loves her therapies. Her play therapist is on vacation until January 11th-ish, so our Tuesday is boring. I did, however, decide to make Baked Mackenzie for lunch. It was quite delicious. I'll have to post the recipe when I get the time. ;)

Baked Mackenzie

Bring on 2011!

2010-12-27T14:41:00.004-05:00

Christmas was nice. Mackenzie seems to enjoy all her presents, although towards the end she was *done* unwrapping. Really, she peaked when she unwrapped her Calico Critters Hedgehogs. Who can blame her? They're adorable. Unfortunately, the little bug is sick again, so that probably added to her energy drain. Infact, we spent last night in the local Children's Emergency Department. She wasn't terribly bad off, but we anticipated our lovely snowfall turning into an ice disaster, and I didn't want to be stranded at the house while she tanks.

Anywho, here's a random picture from Christmas Eve. We were at Grandpa and Grandma's decorating a gingerbread house. Mackenzie doesn't like food on her fingers, so she was more into pointing to where she wanted the candy to go, as opposed to putting it on herself. :) Personally, I think the bushes on the roof were a great touch.

I'm definitely ready for 2011. The past 2 months have been stressful as far as illnesses go, and I'd love to start the new year out fresh. I don't think that's going to happen with the way Mackenzie's going, but hey. One can hope. ;)

The 12 Days of Christmas... The Alexander Version

2010-12-23T22:50:00.003-05:00

Inspired by a post of our friend Karin, here is OUR version of the 12 days of Christmas.

On the 1st day of Christmas, my true love gave to me
A toddler named Miss Mackenzie

On 2nd day of Christmas, my true love gave to me
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 3rd day of Christmas, my true love gave to me
3 weekly therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 4th day of Christmas, my true love gave to me
4 hours of sleep
3 weekly therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 5th day of Christmas, my true love gave to me
5 noisy mmmaacchhiinneess
4 hours of sleep
3 therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 6th day of Christmas, my true love gave to me
6 specialty doctors
5 noisy mmmaacchhiinneess
4 hours of sleep
3 therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 7th day of Christmas, my true love gave to me
7 months in the NICU
6 specialty doctors
5 noisy mmmaacchhiinneess
4 hours of sleep
3 therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 8th day of Christmas, my true love gave to me
8 French suction catheters
7 months in the NICU
6 specialty doctors
5 noisy mmmaacchhiinneess
4 hours of sleep
3 therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 9th day of Christmas, my true love gave to me
9 different styled syringes
8 French suction catheters
7 months in the NICU
6 specialty doctors
5 noisy mmmaacchhiinneess
4 hours of sleep
3 therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 10th day of Christmas, my true love gave to me
10 three ounce bottles
9 different styled syringes
8 French suction catheters
7 months in the NICU
6 specialty doctors
5 noisy mmmaacchhiinneess
4 hours of sleep
3 therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 11th day of Christmas, my true love gave to me
11 new gray hairs
10 three ounce bottles
9 different styled syringes
8 French suction catheters
7 months in the NICU
6 specialty doctors
5 noisy mmmaacchhiinneess
4 hours of sleep
3 therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

On the 12th day of Christmas, my true love gave to me
12 cases of sterile water
11 new gray hairs
10 three ounce bottles
9 different styled syringes
8 French suction catheters
7 months in the NICU
6 specialty doctors
5 noisy mmmaacchhiinneess
4 hours of sleep
3 therapy sessions
2 tubes, life sustaining
And a toddler named Miss Mackenzie

Happy Holidays to all our friends and family. You all have kept us sane (eh, close enough anyway) with your support. We love you all and hope you have a wonderful holiday, whatever it may be. For our friends who are no longer with us, we miss you terribly, and carry you in our hearts.

Also, infinite thanks to all those who were selfless enough to make their path in the medical field. Without you, we wouldn't be fortunate enough to have a wonderful daughter who has a future to shape. Thank you for devoting your lives to making sure others, like Mackenzie, have one.

Happy Holidays, everyone!

--The Alexanders
Sent from my Verizon Wireless BlackBerry

Awe-some!

2010-12-22T18:35:00.004-05:00

For dinner, Mackenzie sucked ketchup off fries, moved on to sucking on Cheetohs, and then BBQ sauce off chicken nuggets! Woop. Terrific for a girl who hasn't wanted to taste anything in nearly a month.

She also signed "thank you" without being prompted. I held my hand out for the chicken nugget, she placed it in my hand, and then signed, "Thank you. Thank you." :oD She's really getting a knack for appropriately using her signs. The day before yesterday, I heard an odd noise coming from her room, and she ran out yelling, "Aaahhh." When I asked what happened she signed "fall." I asked what fell, and she signed "tree." Sure enough, her little pink tree had fallen over. I'm assuming she was trying to redecorate it. She likes to move the ornaments around... which I think is her compulsive Christmas habit. Mine is rewrapping presents, so it makes sense that she would have one too. ;o)

Oh she has me WRAPPED!

2010-12-20T15:49:00.003-05:00

Mackenzie signs: "Book, book."

Me: "Give me one sec to finish this, and then we'll sit down to read a nice big stack. One second, please."

Mackenzie signs: "Crying."

Sugar Cookies and the end of Cookie Weekend.

2010-12-19T18:21:00.005-05:00

Holy cow... what a weekend! I am ex-haus-ted! I think I spent the majority of this weekend in the kitchen. On the bright side, I think I met my 2010 kitchen baking quota, so I don't have to bake again this year. ;o)

Anywho, here's a collage of my favorite pics from the sugar cookie extravaganza. Mackenzie's favorite part was the sprinkles. (Click to enlarge.)

And here are the sugar cookies themselves. Before I hear any smack, Andy picked out the colors for the icing! And Mackenzie went a little overboard with the sprinkles. But they're really good! I think next time they need a bit more vanilla extract, though.

Moravian Cookies

2010-12-18T21:22:00.005-05:00

The Moravian cookies turned out really well. :o) They don't taste like potpourri at all (*ehem* Kerry *ehem*). They do make the house smell wonderful, though. As promised, here are some photos. (For those on FB, just ignore this post.)

The beginning... Mac was super excited.

*Insert 2 hour break*
(I didn't realize the dough had to sit for at least an hour.)

Verdict: Success!
Mackenzie liked them. Well, she didn't actually eat any of them, but she did enjoy sucking on them. :o)

Christmas Cookie Weekend!

2010-12-18T12:11:00.004-05:00

Mackenzie has been sick the entire month of December. No joking - the entire flippin' month. We had planned to make Christmas cookies 2 weekends ago, but decided not to because Mac was punky. She's finally her perky, playful self, so we're turning this weekend into "Christmas Cookie Weekend". I definitely think we'll make a tradition of devoting an entire weekend to Christmas cookies. Granparents & the staff at RLM better be prepared to be bombarded with cookies in the years to come! (And even this year - we plan to make 10-12 dozen!)

Today we're making Moravian cookies and tomorrow will be sugar cookies. The Moravian cookies take a bit of arm work, but Mackenzie will get to help roll out the dough, cut the cookies, and sprinkle confectioner's sugar on a few of them once they've cooled. The sugar cookies tomorrow will be messier... if you can say anything is messier than confectioner's sugar, that is. We have 4 different kinds of sprinkles, and I plan to have several different bowls of colored icing.

So! Stay tuned for pictures of the hilarity. :o) Right now I need to hang up my "Danger: Cookie zone. Beware of flour explosion!" sign before putting Mac down her for nap. ;o)

Busy Tuesdays

2010-12-13T22:42:00.003-05:00

Tuesdays always seem to be the busiest day of the week. I really wish this was reserved for Fridays, but I won't complain too much. As much as I get stressed, I love the challenge of a tightly packed schedule.

We'll be starting the day bright and early with an 8 am speech therapy session for the little Miss. I had planned to hit the library for Tots & Tales at 10 am, but will give Mackenzie another week to get over the ickies. I'm fairly certain that our case worker with the waiver program will be coming at noon for her 60 day visit, but I might be mistaken. I accidentally deleted the voicemail. :o/ Then a CBRS (community-based rehabilitative services) therapy session at 2:15 pm and a graduation consultation at 4:30 pm.

Speaking of the ickies, Mackenzie seems to be recovering quite well. For those not in the loop, Mackenzie had tracheitis and then caught a GI bug on top of it. I must say that antibiotics, gastritis, and an ileus do NOT go well together. I had to bring out the feeding pump again, as Mackenzie was not tolerating her bolus feeds in the slightest. The only schedule she could manage was an hour on the pump with a slow rate and small dose, half our off, 24-hours a day. Sound exhausting? It was. I still hear pump alarms when I close my eyes.

In more adorable news, Andy taught Mackenzie the sign for "AAAHHH!". (Think of holding your hands up and screaming it.) She came to me earlier today and randomly signed it. I could *not* stop laughing, which caused her to do it over and over again. There's nothing like being "scared" in sign language. ;o) I really don't know how so much personality can be packed into that tiny body of hers, but WOW.

Honors Graduate!

2010-12-11T12:18:00.004-05:00

In the hustle and bustle of getting ready for Andy's company x-mas party yesterday (which was a blast, as always), I wasn't paying much attention to the e-mails streaming in on my Blackberry. During the social hour of the celebration, I took a peak at my phone and discovered I passed my final and am graduating with honors. Woop woop! It totally made my night... as you can tell. ;o)

The end of an era.

2010-12-06T09:12:00.003-05:00

Back in late April, I bought Mackenzie a stuffed sheep on a whim. I was at CVS, their Easter merchandise was on clearance, and I saw an adorable sheep for only $2.50. So I bought the cute lil' sheep, and it quickly became Mackenzie's best friend.

Mackenzie and Sheepy are practically inseparable. They do almost everything together - naps, walks, eating, reading... you name it, they do it together. Well, except baths. Mommy does have to draw a line somewhere. Unfortunately, Sheepy isn't holding up well as a constant companion. His fur has become a bit matted and grimy looking, no matter how many "baths" in the washer he gets. I have a very real fear that any day now he'll just crumble. Since finding a replacement for the little guy is impossible, we're going to have to find a decent substitute.

Over the months, we have bought many plush sheep in hopes that Mackenzie would get equally attached to one of them. In truth, I've secretly hoped she didn't care for the new sheep. Mommy loves sheepy too, and my heart breaks at the thought of him ever being replaced. It would be like losing a member of the family at this point.

Last night I thought perhaps we could ask Santa to bring a black sheep for Christmas. Mackenzie's favorite nursery rhyme is BaaBaa Black Sheep (go figure). I thought if we introduced the black sheep named BaaBaa and brought him out every time we did the song, then maybe - just maybe - she'd fall in love with him too. It sounds like a good idea, but finding a stuffed black sheep is almost impossible. The few candidates I've managed to line up have all been retired and are no longer sold; the rest just don't measure up to our Cuddle Standard. I don't mean to put down Santa, but surely his ability to supply the perfect toy has a limit, too.

Right now we're at a bit of an impasse. I'm hoping we can come up with a good solution.

It's snowing!!

2010-12-04T18:39:00.007-05:00

*gasp* Is that snow in the sandhills of North Carolina?
Click the photo to enlarge and see the flakes in all their glory.

Awesome, huh?!

No, not really. I edited in the snow. But doesn't it look like it could be snowing? Ahhh... if only!

Today we had planned to make Christmas cookies (sugar cookies and moravian cookies to be more precise), but we opted to go boot shopping for Mackenzie. We put off getting her boots because the weather here has been warm-ish. The temperature just started dropping a few days ago, and I think the cold is here to stay. So boot shopping we went! Apparently others had the same idea, because there wasn't much of a selection at all. Oh well. Functionality not style, right?

While out, I had an ingenious idea to "christmatize" Mackenzie's dollhouse. (Like my new word?) We had bought her the Fisher-Price My First Dollhouse and a couple accessory room packs for her birthday. Today I added red ribbon, bows, garland, bells, a table cloth and white "rug", x-mas tree, scarves, and even a wreath for the front door. :D I think it's absolutely adorable. Andy thinks I'm nuts. (He might be slightly right.)

Bring on the cold!

2010-12-02T08:58:00.003-05:00

I love winter. It is, hands down, my favorite season. Although I know it's not officially winter yet, the weather today has a pleasant chill to it. I really wish we lived in an area that snowed routinely.

My thoughts are in Scotland.

2010-11-30T18:19:00.004-05:00

I am part of an online group for trach parents (and caregivers). I joined it in January of '09, a month after Mackenzie was trached and I realized the trach was not going anywhere anytime soon. I don't think I could sing enough praises for the ladies. They understand it, live it, and still have the energy and compassion to pass along their love. I attribute my sanity to them.

On the 24th, one of our trachy buddies from the forum passed away. Angus was only 6. I don't feel comfortable saying much about Angus or his illnesses, but I will say he made the absolute cutest freakin' Yoda ever. George Lucas, eat your heart out.

We send our love and thoughts to Scotland.

First Night

2010-11-29T22:31:00.002-05:00

Tonight is our first night of nursing in a little over a week, thus making it my first night of sleeping in my own bed.

I miss my baby. :(

I'm very grateful to have the help, but I'm already missing my extra snuggle time. Most nights Mackenzie and I fall asleep holding hands, and I didn't realize how comforting that is for /me/.

At least we still have our Sunday night Mommy-Daughter sleep overs.
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I Never Thought I'd Say..... Take Two

2010-11-26T11:52:00.003-05:00

"No, sweetie, we're not going to play with the kitty's ashes right now."

It's always an interesting time at Grandpa's. ;o)

Pampered much?

2010-11-23T19:49:00.003-05:00

After enjoying a nice, long bubble bath and having her hair shampooed, Mackenzie received a warm lotion massage and manicure. Geeze. I wish I could get that kind of treatment for free! ;) I think the massage was her favorite. She made sure to tell me if I forgot a part, and what part she wanted done next.

Aaahhh... to be 2 again.

I never thought I'd say...

2010-11-20T18:07:00.002-05:00

"No, Mackenzie. Don't stick the crayon in your g-tube."

I guess all kids want to eat crayons, even if they don't eat by mouth.
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Out for a stroll

2010-11-19T10:59:00.001-05:00

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It's beginning to look a lot like Christmas...

2010-11-18T18:17:00.001-05:00

... Not really. But I found this neat night light while looking a box of x-mas decorations. Mackenzie loves him.
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Horse, Cow, Donkey.... Daddy?

2010-11-16T21:43:00.003-05:00

Andy has been home since Saturday. Sorry for not updating sooner. I thought I had, but just realized I hadn’t. Oopsie.

Mackenzie is going to have her second therapy session tomorrow morning with her new speech therapist. If things continue to go as well as they did the first session, I think we’ve found a perfect match. This speech therapist seems to be big on quizzing Mackenzie (which is a big plus with Mac), and she appears to know a ton of signs. I tried to write down the signs Mackenzie knows, and so far we’ve reached a whopping 125. (It was 122, but today I discovered she knew 3 that I didn’t. I suspect that she knows more that I’m not seeing.) The big struggle is getting her to use them in a solid thought process, such as “Mommy, read book please.” So far I’m trying to get her to pair 2 words together, and we’ll work on building up her sentences from there. We also need to work on doing the sign more accurately from a fine motor standpoint. I imagine she gets a bit frustrated when we can’t distinguish between cow, horse, donkey, and Daddy. (Did that come out wrong?)

Friday I’m taking Mackenzie on a solo trip to UNC (solo as in without the assistance of a nurse or Andy). She has a brain MRI at 9:30am, so I intend to leave the house at 6am to give us enough time to get there with frequent stops. Once we get home, I have my medical transcription final to take, which lasts 48 hours. I scheduled it to start late Friday and end late Sunday, since those are the only times Andy will be available to field Mackenzie… thus giving me the least interruption possible. Wednesday – the day before Thanksgiving - will be another solo trip to UNC, this time for ENT clinic. I should have waited to dye my hair until a couple days after Thanksgiving. I’ll have a few extra grays by then, I’m sure. (And for those thinking it is impossible for me to have grays, just ask my hair dresser. She *kindly* pointed them out during my last hair cut. Every.single.one.of.them.)

Aaannnddd for your viewing pleasure, here’s a random pic from Mackenzie’s 2nd birthday. I don’t think I’ve posted this on the blog before, although I /know/ I have posted it on FB.

How to...

2010-11-11T22:45:00.002-05:00

How to trick your husband (or significant other) into thinking you're an excellent cook in 5 easy steps:

1. Make sure he gets pancreatitis or some other illness that either A) requires him to be NPO, or B) can easily convince a newbie docling that your husband would heal better while being NPO.

2. Carry the NPO status out at least 3 days. (Do whatever you have to. Be creative if you must.)

3. Heat a can of chicken broth and add chicken seasoning and red pepper flakes.

4. Koolaid. Sugar free for the diabetics out there, such as my dearie. Cherry or grape is recommended.

5. Sit back and bask in the compliments of your culinary talents while your starved, and heavily medicated, husband floats up to Cloud Nine.
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Little Helper

2010-11-10T19:29:00.001-05:00

Mackenzie is naturally helpful. She likes to carry in shopping bags, put clothes in the drier, turn on the dishwasher, and the like. She's also very observant, and few things escape her.

Recently she has been obsessed with her medical equipment. To be more accurate, she's always been obsessed with it, but now she likes to play with the buttons.

It started with her wanting to do her neb treatments herself. She helps me squeeze her meds into the cup, puts her trach mask to her trach, and turns on her nebulizer.

It has now progressed to her oxygen concentrator and air compressor, both of which she only uses while sleeping. When it's time for a nap or time for bed, I'll tell her, "Time to go to bed!" and she runs to turn on her machines. Above is a picture of her turning on her oxygen concentator. She's really good at it, and even turns them off after she wakes up (if she's not distracted by something.)

The past couple of nights she's been trying to put her pulse ox on. She hasn't caught the hang of it yet, but is getting close. It's cute but sad.
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She gets it from her father.

2010-11-09T01:24:00.001-05:00

It's almost 1am and, again, I find myself in the emergency department... this time with Andy. He's being admitted for pancreatitis. Apparently Mackenzie's innate desire to give me premature grays, wrinkles, and a heart attack is hereditary.

I've explained to Andy that the two of them don't have to keep the hospital afloat as a team. I plan to have a stern conversation with them, together, about not taking turns being admitted. This every month stuff has to stop.

Last week I had told the nursing agency we no longer wanted day nursing. Guess who is eating her words? (They taste sulfuric, if you're wondering.). Thankfully our former-for-all-of-5-days nurse is able to work Wednesday thru Friday, making it easier to balance between Mac and Andy.

Andy's lipase was through the roof, so he'll be NPO - meaning he can't eat or drink - for a few days while they give his innards a rest and allow the antibiotics to kick in. He's currently flying with the birdies with his morphine wings. Redbull has nothing on morphine. I'm fighting the temptation to record him and use it as blackmail. :D
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Pilgrim Hat Sunday

2010-11-07T17:30:00.004-05:00

Mackenzie, Andy, and I had a blast making these Pilgrim Hat treats. Enjoy the pictures while we enjoy the chocolately, marshmallowy yumminess. :oD

Lazy Sunday

2010-10-31T12:56:00.001-04:00

Andy fell asleep putting Mackenzie down for her nap. I think he forgot about the air mattress in the hallway
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Crying like a dork.

2010-10-18T18:55:00.003-04:00

Mackenzie brought her skate bag to me (a clear, zippered bag that holds her skates and pads) and signed "Mommy open".

And I'm balling.

Mackenzie has always refused to sign Mommy. We're around eachother so much that I think she doesn't feel a need to. To have her sign "mommy" AND formulate a 2 word phrase without prompting is amazing. What's even more adorable is that she doesn't sign two words right after eachother. You have to verbally say the word she's signing so she knows that you know what she's saying.

Gah my heart can't get much bigger right now. What a great kid.

I love busy weekends.

2010-10-17T14:48:00.003-04:00

This weekend was packed full of activities. I'm not a social creature by nature, but I do love being busy and being out-and-about. Here are a few of my favorite pics from Saturday. (Facebook friends just ignore this post.)

The first two are from the Gross Farm's pumpkin patch. It was overpriced, in my opinion, but Mackenzie had fun anyway. We'll be looking for a different place to go next year. The second two are from the Jambass Ranch - a wonderful "petting zoo" of sorts.

Happy October!

2010-10-12T18:28:00.005-04:00

I know I'm 11 days late on this post... BUT... happy October everyone!! We hope everyone has a fabulous Halloween filled with spookalcious treats and tons of fun!

And now, for your viewing pleasure:

October 2010

No "sass walk" is complete without the uber adorable Monkey slips

October 2009

The serious Vogue face. This was before she developed an affinity for shoes.

October 2008

Gimme a break. Do you know how hard it is to find remotely cute premi Halloween clothes? One word: Impossible. But she pulled off the outfit well. It really slimmed her. ;o) Hehe.

Shopping adventures.

2010-10-10T15:11:00.003-04:00

The weather is starting to change here in North Carolina. The nights are cooler and the days are finally tolerable, with highs in the low 80s. We spent the weekend getting Mackenzie's fall and winter wardrobe together. I won't bore you with the details, but here are some random pictures to document the festivities. Enjoy!

Having lunch at Target. Mackenzie loves marinara sauce.

Apparently she thinks she's "goth" now. She loved the Monster High collection. I think it's a bit old for her.

Starting to get sleepy.

Chocolate chip cookie as a treat. Yum! (A highly messy treat, I might add.)

Lunch on Sunday at Subway. Enjoying a Harvest Sun chip while pointing out the ceiling flaws.

She picked out the hat and purse herself. She's a fashionista for sure.

Modeling another hat, scarf, and purse.

Enjoying an airplane ride. :oD

Her "loot" from Claire's. I haven't been in the shop since I was a pre-teen. Mackenzie LOVED it.

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Home!

2010-10-07T12:43:00.002-04:00

We're home. :o) Mackenzie's on Tobi nebs and Cipro.

She has a bit more energy and her secretions are MUCH better. She's still pale and easily tired, though.

Can you tell she's happy to be home?

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Egg salad and cherry sandwhich?

2010-09-29T10:36:00.001-04:00

Wheat toast + egg salad + cherry yogurt = BARF! But apparently Mackenzie likes it. She's been licking off the egg salad and yogurt for 20 minutes now.

(Can you tell she doesn't feel well?)
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Chatty Cathy

2010-09-26T18:44:00.001-04:00

Mackenzie definitely knows what a phone is and how to use it. She loves pretending to talk on the phone, and even gets a kick out of talking to Daddy on his way home fron work. I'm not quite sure where she gets it from. I'm really not an outgoing person and rarely talk on the phone unless it's with Andy. I wonder if this is a warning of the years to come?
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Harris Teeter

2010-09-25T12:48:00.001-04:00

Second only to Toys R Us, Harris Teeter is one of Mac's favorite places to shop. Free balloon and free cookie? Woohoo!
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The sass is genetic.

2010-09-22T15:39:00.004-04:00

Me: "Time to eat! Do you want to eat by your mouth or your belly?"
Mackenzie: **points to belly**

Introducing: Mr. Nate Berkus, aka: Bear.

2010-09-20T21:15:00.009-04:00

We have a new addition to the Alexander trio (or should I say quartet if we're to include Sheepy?) His name is Nate Berkus, aka Nate, aka Mr. Berkus, aka.... Bear.

As you'll notice, Mommy gave him a trach and a "belly button," as we like to call it. (We always end up with the wrong size trachs while Mackenzie's inhouse, and the button happens to be a defective one that's too small for Mackenzie to use even if it wasn't defective.) Mackenzie wasn't a huge fan of him pre-trach and g-tube, but she loves him now. She laughs almost every time she sees him. :o) She's a bit obsessed with pointing out his belly button and his trach. I got a little nervous when she started shoving the obturator down his trach, but after telling her that Nate can't breathe that way, she hasn't tried to stick anything else down it. ((Your welcome, Nate.)) She was, however, very eager to feed him today after she got her "breakfast". I asked her how Nate eats and she signed "eat" and pointed to his button. Smart cookie!

And for the sake of cheesiness, here's a video of Andy and me singing Happy Birthday to Mackenzie while laying her down for bed (the night of her birthday, obviously.) Nerd Bucket was trying not to smile. :o) I love her smirks.

PS - Be forewarned that we are NOT singers.
PPS - The backwards "L" is her sign for "I love you."

Picture Post

2010-09-18T13:33:00.002-04:00

I have a BALL! Oh... my... goodness!

Memories

2010-09-16T20:30:00.002-04:00

Quite frequently I have memories resurface of negative things that have happened with Mackenzie. I shy away from calling them flashbacks because, for the most part, they're not debilitating and I can function fine - with a slight change in mood and admitted iritability. I would definitely agree there might be a degree of PTSD attached to it (or causing it, I suppose?)

They used to happen much more frequently and almost always had some sort of trigger - normally a noise. They started when Mackenzie was first transferred to the UNC NICU, and I've found that as long as I keep my mind busy, they aren't as "bad". During our second trip to the UNC NICU, I started devouring a book a day and the distraction kept me fairly peaceful. Mackenzie and I would cuddle in a large Kangaroo chair and she'd sleep while I read. I'd leave the NICU long enough to shower, eat, or attempt sleeping, and pretty much lived with a book in my hand. Even now, I constantly have to keep my mind going. My body is feeling the strain, and some days I could sleep the day away if it was an option.

Anyway, the most frequent memory - and the one that struck me while I was getting ready this morning, spawning this blog post - was when Mackenzie went into respiratory distress shortly after discharge from the NICU. Her and I had just made it to a room in the children's emergency department, and Andy was parking the van. Her sats were steadily dropping and her work of breathing was awful. The vent never stopped alarming. There was a respiratory therapist trying to hook up the suction machine on the right side of the hospital bed/goureny because the RTs literally grabbed her from the van and ran. He had brown hair and a goatee, and was really struggling with untangling the suction tubing, although that's a bit irrelevant I suppose. Mackenzie's lips were purple (not the traditional blue) and her eyes would roll back, focus, roll back, focus. She was crying, but you couldn't hear anything besides the occasional squeak. This was when her airway was almost completely occluded and she couldn't make any noises. I was standing at the foot of the bed, ripping myself to pieces trying to think of what to do. I was torn between looking at her sats on the monitor (which read 6%, but in retrospect it was probably off) and looking at Mackenzie. At some point she looked right at me and cried, as if to say "Help me. Do something." And my heart broke.

That's where the memory always goes into replay mode. I see her pleading face and feel the knife in my gut because I truly don't know how to help her.

It's one of my worst fears - being in that sort of situation and not knowing the next step. I suppose that's arguably one of the reasons I am so set on having back up plans for the back up plans, and knowing as much as I can about anything remotely relevant to Mackenzie and her "conditions". It helps with some of the fear, but not entirely.
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Dinner Tradition

2010-09-13T19:08:00.002-04:00

Keeping up with last year, we've created a b-day dinner traditon... Chillis! Mackenzie loves the skillet queso. Yum yum!

And to compare w/last year:

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Happy Birthday, Nerd Bucket!

2010-09-13T07:56:00.004-04:00

Wow. Two years! It's hard to believe it has been that long.

I'm feeling a bit hypersensitive and weepy this morning (in a good way, I think), so I'll keep this post extra short.

THEN
1 pound 11.5 ounces
12.75 inches

NOW
23 pounds 8 ounces
31 inches

Cake

2010-09-11T19:31:00.004-04:00

Here are a couple pictures of Mackenzie's cake. :o) Not perfect, by any means, but she loved it. I found that it was much easier playing w/the fondant this year compared to last. The hardest part was the sheep, and not even he was terribly bad. I had planned on a few more decorations, but the closer it neared to midnight, the less giddy I was about adding anything more.

Next year I'll venture into actually writing something on the cake. My handwriting is hit or miss, and a definite miss when it comes to using any sort of decorative icing. I wish they made edible paint pens or something of the like.

Overall, the tradition will continue of me making Mackenzie a fondant cake... until she tells me she wants me to stop, anyway. I enjoy doing something special for her, and she seems to get a kick out of it too. As soon as she saw the sheep, she got really excited and started signing "sheep" over and over. It certainly makes everything worth it. And hey, it's only once a year. :o)

Almost here!

2010-09-09T15:51:00.003-04:00

Mackenzie's birthday is right around the corner. Eep! The only thing left to do is get her cake ready. :o)

We decided to take her to the NICU on Saturday, as long as I don't chicken out. :o) We haven't been back since she came home last year (besides the reunion, which wasn't in the NICU itself - obviously), so I'm curious how I'll feel about it.

Besides that, nothing really big is going on. Sorry to disappoint!

Cape Fear Fair

2010-09-07T08:43:00.004-04:00

Sunday we headed off to the Cape Fear Fair. It was Mackenzie's first Fair and being under 36" tall, which I'm afraid she will be for a decade if she inherits my height, there wasn't much she could do. She enjoyed walking around, though, and pointing things out to us. Mostly the cars (tractors really but I didn't bring our dictionary to look up the sign).

I think her favorite part were the animals. They had a place to feed some farm animals (which apparently included a kangaroo, camel, etc). She got a kick out of the goats and sheep. The pigmy goats were trying to eat her dress, but she ddin't mind. :o)

Right next to the animal petting/feeding area was a place for pony rides. I thank that was, hands down, Mackenzie's favorite. Who knew she'd be a natural? After Andy showed her where to hold on to, she did exceptionally well and smiled from ear to ear. In the last picture, she's attempting to sign horse. The silly goof!

Early Present

2010-09-05T14:20:00.005-04:00

Andy let Mackenzie open one of her birthday presents early - a pair of toddler skates that we debated about getting for a while. We know she's a bit young for them (an assumption verified by her inability to stand in them without help), but she does seem to love them. Andy's too nervous to take her outside with them, but she did okay in the dining room. She would have done better had she not had her squeaky shoes on.

Squeaky shoes + skates = Bad idea. She wanted to make her shoes squeak and roll and the same time. She fell down a couple times, but thanks to the knee pads, she didn't even notice.

What a cutie. Ignore the mis-match PJs. She hadn't quite gotten ready for the day yet. :)

Productive yet painfully lonely day.

2010-09-03T23:16:00.001-04:00

Today was a very productive day. I managed to wipe out 22 reports, most of which were a combination of oncology with a spice o' radiology. My goal was 16, so I feel good about surpassing it. One of the major downfalls of such a 'medically' engrossed day is that I can't sleep. I always end up with random words floating around in my brain. Tonight's word is adenocarcinoma. I wonder if doctors ever have that same problem or if they're just so exhausted by the end of their day that they fall asleep instantly?

The other problem, which is much bigger, is that I don't get any quality time with Mackenzie. :o( I really missed her today. On the bright side I don't have any nursing Sat and Sun, so we're definitely going to have a slumber party. Maybe I'll even pop some popcorn and we can watch a movie.

And since I'm feeling a bit ridden with guilt, here are a few random pics of Mac. I'm doing this on my blackberry so they may display at the top instead of the bottom. In any event, one is of her sleeping (again) in an oh-so- comfortable position. It seems to be her current position of choice. I don't mind as long as she doesn't get too tangled. Another is her cheesing after waking up from a nap. She was chilly and wrapped herself in a blanket while watching one of her shows. And the other is of her helping me carry in groceries. She's a helper to the bone, and yesterday she decided to sort through the bags to pick something to carry, rather than grabbing a bag like she usually does (I make sure its super light) to carry. She just happened to pick my chicken... Which she subsequently stole and refused to give back until I gave her one.

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Freakin smart alec.

2010-09-02T16:05:00.002-04:00

While chaning her diaper, I tell Mackenzie: "Yuck. You stinkies."

Mackenzie signs flower.

*sigh* And so the sassing begins.
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First Narrative and Cheesburger Delight

2010-09-01T18:51:00.002-04:00

Mackenzie "told" her first short story of sorts.

She signed: Lion, chicken, Mommy, shopping. Lion, chicken, help. Train.
Translation: Lion, chicken, and Mommy went shopping. Lion and chicken helped. (And I guess we got on a train.)

When Andy came home, she told him about a lion, dog, and a cat that went driving in a car. :o) She rocks. If she keeps this up, I won't have to take Europe away from her. (See the post below for an explanation on that one.)

She's really coming along with her expressive communication. She's starting to say the first letter to words as she signs them. For instance, she'll sign bird and say buh. We don't have a speech therapist on board right now (not including our feeding ST at UNC), but hope to get someone on within the next few weeks. Our last therapist was really nice and got along well with Mackenzie, but I don't think her "teaching" style was the right approach to take with Mackenzie. Not to say her style is wrong, I just don't think Mackenzie benefited from it.

And here's a pic of Mac "eating" my cheeseburger. She's into tasting the foods we're eating, which is FANTASTIC!

I never got that cheeseburger back, btw... but I suppose that was for the best. ;o)

Best quote ever from a dream

2010-09-01T02:46:00.001-04:00

"Mackenzie, be nice or I'm going to take Europe away."

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Slumber Party

2010-08-29T22:23:00.001-04:00

I ended up canceling the Sunday night nurse this week. I'm still not sure what I want to do with it in the long run, although I'm leaning towards getting rid of it. I do get to sleep later, but I also get less sleep overall.

As you can see, I was not the first to fall asleep. I'm almost tempted to draw squigglies on her face. ;o) Well, to be honest, I'm never the first to fall asleep with Mackenzie... which is undeniably a good thing.

I just hope she doesn't end up stealing me (typo bit I left it because it makes me feel like the Lucky Charms leprachaun -- how do you spell that? my spell check suggested leprosy) covers like she did last week. She refused to sleep with hers so I gave her some of mine, only to wake up with none. Eh, what can I say? She's her father's daughter. (That is one of the most ridiculous sayings I've ever heard, btw. Just sayin'.)

Random Thought: Mackenzie snores. Not literally, but her trach secretions sound like it sometimes. It makes me smile. Obviously she's "snoring" right now.

Alright... I'm off to read a couple chapters of my book before nodding off. As you can tell by reading this, I'm slightly tired.
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Wood Burning Project

2010-08-28T14:07:00.001-04:00

Here is my latest wood burning project. It's for Mac's birthday, hence "The Birthday Surprise". We'll see how it turns out. I was thinking of painting it, but may just paint details and stain it.

I found the wood at Hobby Lobby for a great price. It's shaped like a book, but has a hidden drawer where the spine is. I was thinking of filling the drawer with different color hair ribbons, but then again I'm not convinced I want to deal with that mess. :-o

Oye... I haven't done any sort of wood burning in a year, at least. This should be interesting! Hopefully I can steady my hand long enough to rough it out.

I'll post more pics as things move along... Erm, unless it turns out really bad. In that case you'll never hear about it again. ;o)
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Birthday shopping is almost done!

2010-08-27T12:20:00.005-04:00

There are 2, maybe 3, things left to buy for Mackenzie's birthday. I'm pretty proud of myself because I don't feel like I went overboard. Andy might say otherwise, but I assume that's a male thing. ;o) Last Christmas I was ridiculous, so I made an effort not to do that again.

I always try to go the educational / developmental route when it comes to gifts. I ask her therapists what they suggest or recommend, and then go from there. Since Mackenzie is no longer delayed, aside from expressive communication, and is over her sensory issues, it was a bit harder to come up with things that would push her along. Our CBRS therapist once told me that she always recommends buying things one step ahead, so I stuck with that. She's a bit young for a couple things, but with Mommy and Daddy's help she'll get there.

The only major thing I have left to do is her cake. Last year I decided to start playing with fondant and it was definitely very... interesting. It turned out well, but was lots of stress. I swore I wouldn't do it again, but I think I'm going to make a tradition out of it. This year I have a great idea of what I want to do. I don't want to give away too much incase it doesn't turn out, but it does involve fondant and sheep. (I'm now waiting for PETA to send me hate mail.) I may have to dip into my respite hours for nursing because it will definitely take a while to make. Anywho, for those who didn't see it last year, here's the cake:

As for special trips, we don't have anything planned. Most know of our wonderful trip to the Biltmore for Mackenzie's first birthday. It was really amazing and I hope we can go again soon. We may take a day trip out of town somewhere just to get away, but who knows. Mackenzie will be happy with whatever, and we'll be happy as long as she is. :o)

Still Here!

2010-08-25T15:46:00.003-04:00

We're here and just hanging out. There really isn't anything super fun and exciting going on. I'm enjoying the mello-ness this week has brought.

Mackenzie now knows over 60 signs and trying to introduce more is still a major challenge. I ended up buying a pocket ASL dictionary to keep in the suction machine while we're out and about since that's always when she wants to know the sign for something (and Blackberry doesn't have an app for it - dang it!). Despite a new speaking valve, the Trachoe Twist, and her tolerating it well, she's still not making a whole lot of progress on verbal communication. Andy and I have noticed that she concentrates on people's mouths when they talk, so I think she's trying to figure it all out. Random side note: Mackenzie used to use the sign "dance", but now when you ask her how you say it she literaly dances. It's absolutely hilarious and I'll try to get it on video soon.

Oh! Last week, while at UNC, we stopped at my favorite store (Barnes and Noble - love them) and got Mackenzie the first of the Brain Quest series. We use it to quiz Mackenzie on nouns, verbs, colors, etc. For intance we'll hold two cards, say one of a kid eating and one of him sleeping, and ask her which one is eating. The little nerd really enjoys it. :o) Andy and I find it interesting since we both loved the Brain Quest cards growing up. It's a pleasant reminder of just how much Mackenzie knows and isn't able to tell us. It's easy to underestimate someone who is nonverbal.

I'm not sure if I mentioned before but I fired the day nurse (don't I always?) and so we have someone new. The new nure seems okay. There's nothing grossly wrong yet. I did catch her trying to give Mackenzie 5 mL of her multivitamin instead of 0.5, so I'll be checking after her for a bit. All of our nurses have had a problem with meds and it baffles me a bit, but I expect it now I suppose. I don't understand what's so difficult about it, but hey. The day nurse is here 2 days a week (Thursday and Friday) and I enjoy sleeping in an extra hour while she's here.

In firing the day nurse, we also lost our Sunday night nurse (as she worked that shift as well). I'm trying to figure out what to do about the shift. We have someone willing and available to work it, but it happens to be the same nurse I sent home for smelling like an ashtray. She's a competent enough nurse, but she hits a sore spot after that time. I want to actually get rid of Sunday night nursing, and probably will before this weekend. When we don't have a night nurse (for whatever reason), I camp out with Mackenzie in her room. I lay on an aerobed on the floor and it's nice. I can definitely understand why some people let their kiddos sleep in their room. :o) But anyway, I really enjoy our Sunday nights together so I'm inclined to ditch the Sunday night nursing. I never get a whole lot of sleep since I spring awake anytime Mackenzie rolls over, which means Mondays are a bit slow going... but I just really like our "girl" time I guess.

And for the random pic this post, here's one I took yesterday of Fräulein Sonderling Wanne (aka: Miss Nerd Bucket).

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PS: Excuse the typos and spelling errors. I'm too lazy to reread.

Celebrating Tommy

2010-08-18T08:49:00.007-04:00

This entry is quite a bit different than I normally do, but there are some very special circumstances for it. Below is a guest post written by a wonderful friend named Rene. Rene has lived through my worst nightmare - the one that settles in the pit of my stomach every time Mackenzie gets sick and has me stepping into Mackenzie's room at odd hours of the night to check on her. I hope that you all take a moment to share in Rene's journey with her son Tommy, and join her in celebrating his life this Friday, August 20th.

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My name is Rene Dereksen. I write a blog Musings of a Heart Family. I am the parent of a medically fragile child that lost his battle and went to Heaven. His name was Tommy. He was my 4th child and my 4th son. I want to tell you a little about him.

Tommy was born 7 ½ weeks early on September 25, 2006. We knew from ultrasounds that he would be born with serious congenital heart defects. What we didn’t know until after he was born that in addition to heart defects (CHD), he would be born with a birth defect in his esophagus that would prevent a productive swallow. His heart was missing a ventricle (lower heart chamber), and had the major arteries reversed. His oxygenated blood mixed with the un-oxygenated blood in the bottom of his heart like a bowl and circulated through his body.

When Tommy was 4 weeks old, he coded and required emergency open heart surgery. His recovery was Hell. He developed an infection from one of his lines that entered his blood stream, one lung collapsed, the other filled with fluid, all on the same day. We didn’t know if he would make it. Once he had gotten passed that hurdle, we began to try to remove the breathing tube. He failed three times. Each time, saliva would pool in the back of his throat drowning him. At two weeks old, he got a permanent G-tube for eating and at 10 weeks old a trach to breathe so that we could suction out the extra secretions. I was finally able to hold him after the trach was placed. It had been 6 weeks since I held my sweet boy!

Being that premature and then going through a total of 4 surgeries and procedures before his due date was traumatic for Tommy. He did not bond with me as a mom in those first few weeks and months and because of this, developed Sensory Integration Disorder. Basically all touch felt like bad touch to him because his entire life had been filled with needle sticks, surgeries, catheters, and pain. My poor little baby wouldn’t let me hold him, make eye contact or listen to every day sounds. We struggled through therapies and worked with specialists to teach his body what love felt like. We were rewarded with our first smile at 5 months old! From there, life should have gotten “easier”. Instead, it made life harder.

We had broken through to our sweet boy and his wonderful personality, but we had so much more to face. His heart still required at least two more surgeries and his lungs were a mess. At nine months old, he had a second heart surgery, but was left oxygen dependant. For the next year, we let his heart and lungs take a break and concentrated on his airway and his swallow. Tommy shined through it all.

His second year was amazing! At 18 months old, he learned to sit on his own. Around the same time, he had surgery on his airway that gave him enough room to vocalize and he learned to say one word-“Mama”. I cry tears of joy to this day remembering that day. He loved to watch us blow bubbles for him and watch his favorite movie, “Finding Nemo”. He learned to sign and to give kisses and hugs. He made me smile every single day.

In August 2008, Tommy had his trach finally taken out. Five days later, he would go into respiratory distress and be put back in the hospital. It just happened to happen on a Friday. Nothing gets done in the hospital over the weekend, so mainly he was kept for “observation”. Instead, he grew sicker and sicker and the more I tried to get tests run the more I was ignored. We were placed on a floor that was not familiar with him and the doctors on call knew of him but weren’t people that treated him and knew his complex history and how he should be behaving. I was brushed off over and over again. On Monday when his Attending came back, tests were started because he had not improved over the weekend.

Too little, too late.

Tommy was watching “Finding Nemo”, blowing me kisses. He went into respiratory distress again and a crash cart was called. He looked up at me and let out a little cry and closed his eyes. For 45 minutes, CPR was done and medications pumped into his body, but it was all in vain. Shortly after 11 pm on August 20, 2008, Tommy died from complications from his congenital heart defects. Autopsy would show that Tommy had bronchopneumonia and was in heart failure. His lungs were so weak they couldn’t fight the infection and his heart was so weak that it couldn’t keep up with his lungs. He was 35 days away from turning 2 years old. One minute he was there. The next, he was gone.

This Friday, it will be two years since we said goodbye to Tommy. We are going to celebrate his life. During the day, we will go to the cemetery and blow bubbles for him. Maybe let a red balloon go. Red was his favorite color. We will watch “Finding Nemo” together, and that night, there is something special happening.

By coincidence that same day, a NASCAR promoting CHD research and awareness is racing in Bristol, TN. The car is sponsored by Hope 4 Tiny Hearts (Chloe Duyck Memorial Foundation) and is being driven by Kenny Wallace, #28. Parents were asked to raise money for the foundation to help with their awareness campaigns. In return their child’s name would be placed on the car for the whole world to see. Tommy was sponsored by a wonderful friend and we were able to get his name on the car. Look for Tommy Dereksen on the hood of the car, along with many, many other names. They represent just a small fraction of the children affected by CHD. In closing, I would like to share some statistics from the National Heart, Lung, and Blood Institute.

35,000 babies are born annually with a congenital heart defect.

33,300 per year, 2777 per month, 641 per week, 91 per day, 3 per hour all born with something wrong with their hearts. CHD is the number one birth defect. It will take the lives of more children in their first year of life than all forms of childhood cancer combined.

3551 Deaths per year, 295 per month, 68 per week, 9 per day.

9 per DAY lose their lives to CHD. Tommy has a lot of friends in Heaven.

Thanks for letting me share Tommy with you.

Chillin' at the cardiologist's.

2010-08-16T10:49:00.002-04:00

She has too much personality for her own good. ;o)

PS - Echo and EKG look good.

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Burried

2010-08-14T19:51:00.001-04:00

I'm fairly certain she's under there somewhere. :o)

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Nap time!

2010-08-12T11:59:00.001-04:00

Nap time is always fun here. Mackenzie gets in a giggly mood when she's tired, and I can't help but laugh myself. :o)

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She's all girl.

2010-08-11T17:29:00.005-04:00

Last night we didn't have a night nurse, so I camped out with Miss Mac. I layed on an air mattress on the floor, and we held hands and whispered secrets... which she found completely hysterical. She's whisper and then start laughing. Of course, she knew to zip it when Daddy walked in. ;o) It was beyond adorable.

Mackenzie is quite the girly girl. She likes having her nails done (which at this age just means trimmed), and could spend ages giggling and brushing my hair. She seems to prefer dresses over shorts/pants, and has a fondness for shoes, hats, and handbags. She also likes jewelry, although she doesn't really get to wear any.

Erm... well... she's "all girl" most of the time anyway.

Eye Appointment

2010-08-10T08:16:00.004-04:00

Mackenzie had her follow up yesterday to check her eye prescription. We did the dilation drops the night before with the hopes of it being less traumatic, and it was definitely a good tactic. We tried to make the exam a game, as in the nurse/tech would hold up a lense and Mackenzie would hold still, then when she pulled the lense away I'd say "Great job! Let's play again!" It worked like a charm until the doc came in. At that point she was revved up and didn't want to sit still. Minor backfire, I suppose. ;o)

But! Her eyes look like they're progressing well. Structurally they look normal (still), and her vision appears to be getting a bit better. We're continuing with the same prescription and will have a follow up again in May.

I did learn something knew and wanted to share the tidbit of knowledge. Apparently the purpose of glasses at a young age (to correct vision) is to show the brain what a clear image looks like. If you miss that time frame, the brain will never "know" what a clear image looks like and will assume that blurry is the best that things will ever be. So later on, even if a person is given glasses, the brain will always interpret things as blurry because it doesn't know what clear is. Crazy, huh?! ((I hope I got all that right.))

Next week is Mackenzie's busy week, although not quite as busy as orginally planned. We start Monday off with a cardiology appointment to address her lack of energy. With all the respiratory changes going on, I want to make sure that her heart is still okay and not catching the brunt of things. I plan to ask for an EKG and echocardiogram. I doubt we'll have any problems, but I'm not one to cut corners with Mackenzie. She doesn't play fair. Wednesday is a sleep study at UNC (oh joy... because we know how FUN those are), followed by labs in the morning at clinic. She was supposed to have a bronch, MRI of the brain and brain stem, and be admitted for a pH probe on Thursday but scheduling issues came up and that has been pushed off until November. I think it works out well because she'll be ticked off from the sleep study anyway. Depending on how exhausted Andy and I are, perhaps we'll hit some sort of museum in Durham on the way home to make up for things.

Mackenzie turns 2 in just over a month. Eeep! Where did the time go?!

Murphy's Law

2010-08-05T09:13:00.004-04:00

Murphy has really been at it hard for the past few weeks. The jerk. On the bright side, so far things have been ironing themselves out and I hope they continue to. Maybe I need to change the sign on the door from saying "No solicitation" to "No Murphynization". Surely that's a word?

On a slightly seperate note, I've been extremely giddy the past few days. Okay, extremely is a bit much... but I've felt this distinct shift toward the positive. It feels like everything we want is within reach, and while it's going to take a hell of a lot of work to get to the final product, it's possible and it's happening.

Alright, enough with the vaguities. (Another word I've just invented.)

Mackenzie's doing well. Last night at dinner, I managed to get her to eat some beef stew broth, mushy carrots (from the beef stew), and drink 3oz of sweet tea (decaf, of course) in one sitting with only 1 episode of gagging. It doesn't sound remotely healthy, but I'm desperate to get her to eat. She really seemed to enjoy it, so I'm going to be researching today similar foods that we can eat "together", as she refuses to try something unless she sees me eating it first, but will be relatively easy for her to manage. Over the past week or so, she's REALLY wanted everything I've been eating so she's getting the basic drive to eat, unlike before. Now it's a matter of getting her to eat safely and progressing. Woohoo!

Do you "library"?

2010-08-03T19:57:00.001-04:00

Mackenzie enjoying some puzzles at the library. Library has become a verb.
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Another video sans trach

2010-07-31T18:18:00.002-04:00

Trach change this morning and I left it out for a bit again for Mackenzie to sound off. She laughs as soon as I pull the trach out now. Well, after the initial panic of "wait, this is different". I LOVE the smile 3/4 of the way through. :oD

(Turn your volume down a bit before pressing play! And excuse the quality - I took it on my Crackberry.)

A glimpse into the future...

2010-07-25T19:42:00.004-04:00

Mackenzie 65 years from now:

Hehehe.

Anywho. It has definitely been an exhausting weekend.

Andy took off work a bit early on Friday so we could head to Myrtle Beach to meet another SN family. We definitely enjoyed it, and posted a few pics from the visit on FB and Flickr. The Mollicas are a wonderful family, and we definitely left with a sense of awe at how well they've all come together to support eachother and Joseph.

Saturday we took a morning trip to South of the Border and had a blast. (See photo above.) Came home and Mommy took a 5 hour "nap". Andy finally succeeded in waking me up and I was a mega grump. My attitude was much improved after my computer crashed a few hours later. *please guard shoes from the dripping sarcasm*

Today was mostly fixing my computer. Fun. I get rather... touchy... when I don't understand how to fix things. Andy, of course, caught the brunt of it. Big Brother 12 is going to be on in a few minutes, though. That's always fun. :o)

This is a really craptastic update and I apologize. I mainly just wanted to post the picture... the rest is just dribble.

No use crying over spilt milk...

2010-07-22T21:56:00.002-04:00

... you might as well just play in it!

Let me tell you about my best friend..

2010-07-21T11:54:00.001-04:00

Every time I see Mackenzie with her gigantic monkey, I think of the theme song to Rob and Big.

As you can see, Mackenzie has a new stuffie that has become one of her favs. No stuffie will ever replace Sheepy, I don't think, but Monkey is settling in at a comfortable second place.
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'Night 'Night

2010-07-15T10:13:00.001-04:00

Toddler Bed

2010-07-12T20:51:00.006-04:00

Andy and I had briefly talked about getting Mackenzie a toddler bed for her 2nd birthday. The issues were (1) all the dang cords, and (2) all the dang cords. We figured there was no way we could get around it and, at some point, she'd have to get out of the crib so why not take the leap?

Today I was googling to make sure they didn't make a conversion kit for her crib before we settled on a toddler bed, when what do I find? The crib was recalled back in January! Eek! I called the company and they verified that it was, indeed, recalled and apparently one child died. We hashed it out and we weren't comfortable letting her sleep in the crib another night (even though we do have night nursing, and I sleep in her room when we don't, so someone would be able to respond quickly). I managed to find a really inexpensive bed at Wal-Mart that looks similar to the bed we wanted to get.

After 4 hours of putting it together (yeah - not happy about that!), here are a couple before and after shots. The before shots were from a year ago, but really the only difference was that we aren't using the vent anymore and the oxygen concentrator was moved to the dining room.

BEFORE

AFTER

I like the new set up a much better, although I'm not a fan of having the feeding pump at the head of the bed versus the foot of the bed. We did have to stick a little foot stool at the bottom of the bed since Miss Mackenzie is too short to climb up on her own. The new bed has definitely freed up A LOT of space.

Now to make sure she doesn't pull her g-tube out or strangle herself with the mist collar trying to get out of bed without help. :o/ Thank goodness for video monitors!

This week in books...

2010-07-11T06:37:00.005-04:00

Mommy finally returned those long over due library books and restored the credibility of her library card. Mackenzie is a HUGE fan of books (how could she not be with a Mommy and Daddy who practically live to read?), but I can only read Dorah's Valentine Adventure so many times before I'm ready to hide it at the bottom of a toy bin.

So the current plan is to go to the library once a week and get 2 books. It will hopefully add some variety to the mix and since we go to Tots 'n Tales at the library every Tuesday, we'll be there anyway. Unfortunately our July schedule is a bit mucked up and we haven't been able to get to the library like normal, so we grabbed 5 books that we'll return by the end of the month and get on track in August.

ANYWAY!

Of the 5, only 2 are really note worthy and they are Bonjour Butterfly (a Fancy Nancy book), and The Best Time To Read. Definitely two thumbs up from Mackenzie! She could "read" them all day if we let her.

Does anyone have some all-time favorites to recommend?

Fighting It

2010-07-07T13:15:00.001-04:00

I settled in to do some school work and noticed it was way too quiet in the living room. This is what I found. Poor girl is fighting sleep like a champ.
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