Final Answers

Hiding in the corner eating Chex Mix she hid in her bike trunk

We had our post-op appointment today. It would consist of going over the pathology and cultures reports as well as other symptoms to look for, going forward. At the appointment the Dr. first went over the pathology. The cells that were making up the mass in her neck were consistent with the atypical mycobacterium (ATB) that she had. They also were able to pinpoint the exact bacterium that she had. He said there are different kinds of ATB, and the exact one she had was very rare. So it pretty much meant that her getting ATB is rare - and the actual bacteria that caused hers was rarer than the most common ATB's.

So going forward, we just have to watch the incision on her neck and make sure no other masses begin to grow. If a little bit was left in her tissues, it could come back. We also have to watch and see if any bacterium made it to the outside of her skin. He doesn't think either of these things will happen, but it is possible and we have to watch for that. Other than besides information on how to care for her incision, he was very confident in the surgery and that it shouldn't come back. He said it is rare to get an ATB, and would be even rarer for her to get it again. Hopefully we won't ever have to deal with this again.

We were in and out of our appointment within 15 minutes, so we decided to run a few errands around town, which included me exchanging a gift for a swivel store. You may have seen the infomercials advertising this product. Its pretty much a spice rack that takes up only 4" of space in your cupboards. Here is before and after:

After some gift returns, we went out to eat at Valentinos. It was nice spending the night together as a family. I know I have said this many times, but we really appreciate all the thoughts and prayers people have been sending our way. We have even received a couple of cards in the mail from people in our church saying they were praying for us and will continue to pray. We don't even know these people. Its amazing to me how many people remembered Macyn during this time. We will continue to pray that this is the end of the ATB, and it won't come back. Again, thank you everything. It truly is appreciated.

Christmas Fashion

We decided to make things a little more interesting this year by wearing "themed" clothing to our immediate families' Christmases.

Christmas Favorites Theme - Christmas Vacation, Charlie Brown Christmas and A Christmas Story

 

Ugly Christmas attire

I think I will have to keep an eye out for an ugly sweater for Macyn next year...

Christmas Day

Christmas morning with her new Minnie Mouse chair

We spent Christmas day doing what else - celebrating the birth of Jesus! Just ask Macyn. We tell her its Christmas and she says, "Jesus birthday?!" We started out by going to church in the morning with just us three. For lunch time it was time to head over for Josh's Grandma's side Christmas. It was nice to see all the relatives again since we had to miss out on Thanksgiving this year. Christmas night was spent at my in-laws, opening presents and having a meal. I made roast in the crock pot and the in laws provided the sides. Shortly after that it was time to open presents!

Patiently waiting for presents

Macyn's new pink elephant chair!

Her new little people doll house

We had a good time celebrating Christmas. Macyn got another chair, doll house, pajamas, and mega bloks. We received a filter for our Keurig, so we can brew our own coffee instead of using Kcups all the time. Its also more cost effective this way as well. I also received and ice cream sandwich maker and Josh got a new shaver. I just love Christmas and I am sad it is over....but I guess we have another one New Year's Day, so it's not completely over yet ;)

Christmas Eve

Our Christmas Eve was spent with my parents. We attended the church where I grew up, along with the entire family. It doesn't happen very often that all of us are able to get together, so it was a great way to celebrate Christmas.

After church we took some pictures, and ate a delicious home cooked meal. It consisted of ham, cheesy potatoes, green bean casserole, and corn with noodles. Corn with noodles is my new favorite - I could seriously eat it for my meal and be completely satisfied. Its seriously that good. After our meal we opened up presents. Macyn was good about waiting her turn, and it was fun to see Caden open his presents by himself. There were some interesting gifts given this year, for example, I received a Charlie Brown Christmas Tree...literally. My sisters received footie pajamas (from me), and my Dad got a leg lamp from A Christmas Story. It was a great time with lots of laughter and love. Here are some pictures from the night.

Kids in their matching shirts

Macyn's pride and joy this year is her Minnie Mouse chair from Grandpa and Grandma. Its super soft and completely adorable. She also received a new outfit, boots and shirt from Aunt Brooke, and a tent with a tunnel from Aunt Brandi. She loves the tent too - I'm not in love with how much space it takes up, so it got demoted to the basement...where she plays in it daily :)

I couldn't have been happier with our family Christmas - it was such a good time getting together!

A Little Family Christmas

 Friday night Macyn was starting to feel pretty close to back to normal, for the most part. (You will notice her swollen, crooked smile, but she IS feeling better even though it may not look it!) We decided since we had a different Christmas every night for the next couple of days, we would do our own family one tonight. We had a “gourmet” meal of slow cooker egg bake (super easy and yummy!) and chocolate chip pancakes. After Macyn devoured her pancake, we opened presents....or Macyn opened ALL our presents ;)

We let her open the remaining gift from the “doctors.” She opened a doctors kit, appropriately. For some reason she likes to try the shot on her mommy. She is fascinated by the stethescope as well. We also bought her practical things, like socks, Dora bubble bath, and ponytail holders/clips. She also received No More Monkeys Jumping on the Bed book, Candyland I picked up on black Friday, a Minnie mouse figurine where you can change her outfits, and Minnie Mouse bedding that I also picked up on Black Friday. We also found a 3 piece set of mini appliances - a toaster that "works," a coffee machine that actually drips water, and a stand mixer that mixes. She loves all her things, except Candyland – she doesn’t quite understand the concept yet, but we let her play with the pawns on the board.

Macyn with all her presents

DH opened up the 3 BluRay movies he picked out and bought himself. He also got a Vikings travel coffee cup and some Kahlua coffee K-cups.

Josh bought me a chain for my journey diamond necklace (or should I say, shipping cost – gotta love lifetime warranty!) I also received a new blow dryer and a coffee mug, where you can design your own on the computer, print it out, and personalize your mug. It’s pretty cool!

 We had a nice little Christmas with our family of three, 4 if you count the dog. He received a new retractable leash that has a part to put doo doo bags in it. Pretty spiffy, Buddy.

Doctor Present

During our stay in the hospital, we had the opportunity to pick out a present from a room where people have donated (including a truckload of toys from Mattel!) toys, games, books, and other gifts. We chose the Little People Camping Set, and the Fisher Price Doctor Kit. Some lady also donated all her holiday bears to the Children's hospital for the kids, so we brought one of those home, too. They also had a wrapping station where we could wrap the presents. It was nice to get a break and lighten the mood a little bit to pick out something and wrap it for Macyn. When we got home she kept asking about the, "present from the doctor!" so we let her open the camping set. She LOVES it! Its pretty cool - the camper actually folds up like a pop up camper, and it comes with chairs, a fire, sleeping bags, cooler, car, and even a fishing pole. It is now one of her favorite toys to play with. We are thankful for the generosity of people donating to the Children's hospital. It really did lighten the mood and its nice to see people helping out families and the kids who do have to spend Christmas at the hospital.

The Surgery

Wednesday was the day of surgery to have her neck dissection done. It was originally scheduled for 12:30 in the afternoon, which I was pretty worried about. How do you tell a two year old they cannot eat for 12+ hours?! (no food after midnight). However, on Tuesday afternoon they called and said she would then be scheduled for 9:30 A.M. Whew! That we could handle. It takes about 1.5 hours from our house to get to the hospital, so we had to leave by 6:30 to get there by 8:00. We explained to Macyn what was going on, and she kept on saying, "Doctor take out my bump?" The morning after the surgery she exclaimed, "bump all gone!" :) Anyways, here is how the day went.

Macyn had to change out of her clothes and into her "ninja suit"

Macyn with Mommy before surgery

In the meantime, we talked to the anesthesiologist along with the doctor performing the surgery and various nurses. They told us she would be intubated, an IV started, and explained how long the procedure would be. They also had a child life specialist that came in an played with Macyn to make her feel comfortable. She had toys, bubbles, and pictures of what the operating room would look like, and showed her a breathing mask that was first tried onto a bear, and then her. She also showed the beds through pictures. I really think this put Macyn at ease, and not to be scared.

Looking at the different pictures of where she would be

Blowing bubbles and playing with a light up Minnie doll

Shorty after she was content, they brought in a wagon and wheeled her off to surgery. I think this was harder on me than it was on her. I couldn't stop the tears from flowing when they wheeled her off...that was by far the hardest part.

Macyn being wheeled off to surgery. You can see the mass that is going to be removed on her neck.

They took her away from me at 9:30. They started the procedure at 10:02, and it was finished around 11:15. The doctor then came in and spoke with us explaining they removed the mass, along with 5-10 other surround lymph nodes that could have possibly been infected as well. They cut the mass in half and sent part to pathology, and the other half to cultures to get tested. We have an appointment Thursday to get the final results of the mass on her neck. He also said she has a 2"-3" incision on her neck. They also explained that she was waking up from the anesthesia, and we could see her as soon as she's awake. We finally got to see her at 11:45. Seriously, one of the longest 2+ hours of my life!

Macyn and Mommy in the recovery room

After she woke up a little bit, and her pain was being handled, we were brought to our room at the Castle. She pretty much slept and cried the entire day. A couple of times she would sit up and attempt to play with some toys, but she was zoned out most the time.

She wouldn't eat or drink anything, and we were worried we wouldn't be dismissed the following day. She had an IV pumping her with fluids, but she still needed to start having wet diapers and getting nourishment. Well, she started once we tried putting her at 8:30. It seemed she was going to sleep, until she suddenly started asking questions and talking and smiling! We did get her to eat some pudding about 9:30 PM.

First smile after surgery - complete with chocolate pudding!

The night was pretty rough. She was up from 1:00am to 3:00am, and woke up again at 5:30 am. Through the night she was crabby, but in the morning she really started to perk up, and had a few more bites of pudding, and 1 bite of a muffin.

Starting to feel better!

I am happy she was feeling well, I decided we would only give her tylenol to help subdue the pain, and it seemed to be working. To be honest, I didn't think we would be dismissed with how much pain she had the previous day and night before. Its amazing what 24 hours does. We then met with the doctor, gave us instructions, and dismissed us. He also removed the dressing and a drainage band around her incision. I think Macyn was pretty happy to go home - and that she could finally sit on, "Mommy's hopsital bed."

Ready to go home!

She is doing well at home, sometimes acting like a normal 2 year old and other times more tired and a little out of it. We are thankful this recovery has been good so far, and extremely thankful for all the thoughts and prayers. We are still praying they got the entire infection and we will be completely out of the woods soon!

Big Girl Bed

 We decided to put up Macyn's big girl bed a week early. It was going to be a Christmas present, but we decided it might have a little more success to transition a little earlier. Since she will be sleeping in a hospital bed over night this coming week, I wasn't sure if changing it up when she isn't feeling so well would be the best idea. So we decided to put it together today! As I am typing this, she is sound asleep in her big girl bed, just like "mommy & daddy's bed!" It makes me a little sad how grown up she is getting!

I bought the bedding set at a rummage sale for $10 - includes 2 pillow cases, bed skirt, fitted sheet, regular sheet, and comforter. But ya know, once you go Black Friday shopping and sit in Walmart for 3 hours, I found a good deal on a character set that was one of the door busters. She will be getting that for Christmas too. I like the set we have now, but we will use it as a back up, or whenever she doesn't like the licensed character one anymore ;)

I told Macyn, "show mommy how you sleep on your bed." I may be biased, but I think this is too cute for words:

Sunday Best

We decided to let Macyn wear her Christmas dress to church today since it was the church's Christmas program. We were a little worried how she would do during the service since she usually goes to the nursery. However, she did great! She clapped after most performances, talked about the "kids singing" and would randomly yell out, "AMEN!"

It was quite the challenge to get her to sit still to take a picture. She now thinks as soon as I take out the camera that its time to run around the house like mad, avoiding any pictures, if possible. I was able to get these ones of her rocking her baby - LOVE it! She's such a little mommy!

New Hiding Spot

Macyn found this spot last night. She was whimpering, "Mommy," and I seriously couldn't find her. She then laughed hysterically as I opened the door.

Questions Answered

Bump on Macyn's right side of the neck

 Since we still haven't figured out what Macyn's bump is, we have been praying for answers. Last week at her ENT appointment, they still were not sure. They ran a couple of tests - one being negative and one being positive. However, since once came back positive, there was a slight chance she could be contagious. The specialist didn't think she was, but he had to order her not being in daycare, in case she was. He didn't want to be liable. So we had to scramble to find someone to watch her during the day until we found out more information from a different specialist - a Pediatric Ear, Nose, and Throat doctor.

Fortunately, our families stepped up and watched her for us so we didn't have to take off any more work. Today was her appointment in Sioux Falls, and we finally got some answers. They doctor said he is 99% sure that is an atypical mycobacterium. It pretty much means its a bacteria that has taken over one of her lymph nodes. You get it by soil. She most likely was playing outside, got some dirt on her hands, put them in her mouth, and got the bacteria. This is also the explanation of her atypical lymphocytes they saw in her blood work along with her elevated white blood count. This is the reason her second test came back a false positive. She is not contagious and can now continue on in daycare - thank goodness!

Fortunately, she shows no symptoms besides the large mass on her neck. This is a pretty rare thing, and our first ENT doctor has only seen this during his residency in adults, never in kids. The pediatric ENT today said its seen in 1 to 5 year olds who play outside and happen to contract the bacteria. Its seriously one of the strangest things I have ever heard.

After examining the mass on her neck, he decided we should surgically remove it. If its not removed, the bacteria could break through the skin and then they would have to remove a larger part. It is better to get it done ASAP. She would also need to take 10 days of an antibiotic to make sure all the bacteria is gone.

The surgery is going to take 1 - 1.5 hours. They will open up her neck and take out the mass. They will also look for any other lymph nodes in the same area and do a surgery termed "neck dissection." (google for more information). This surgery is done in patients with cancerous lymphoma in order to get all the bad cells from infecting all the lymph nodes. Macyn will be having this same surgery done, except hers is not cancerous (Thank you, Lord!)

As a mom, it naturally makes me nervous. I asked about the risks involved with the surgery in the neck. The doctor said the carotid artery is near there, as well as a jugular vein. He said naturally those are risks, but he reassured me that's the reason he is a specialist, doing this on children. There is also a nerve that will have to be moved that connects/controls part of the mouth. He said the right side of her face may become droopy, but it would strengthen and go back to normal as she grows and the muscles get stronger.

The surgery is Wednesday and she has to stay overnight. Right now I am just relieved to have answers. I'm 100% sure I am going to be one nervous mama the next week! I will try and keep the blog updated if anything else occurs!

2 Years 2 Months

We have now survived two months of a two year old! To be honest, the past month has been almost a blur with all our medical appointments, seeing specialists, and trying not to stress out too much. The best thing about a 2 year old is, they are oblivious to what is going around them. I think its better that way :)

Here is an example: My parents were watching her overnight so we could attend DH's overnight Christmas party, so they asked Macyn about her bump.

Macyn: "my big bump!"

Grandpa: "What did the doctor say?"

Macyn: "No more monkeys jumpin' on the bed!"

Some other one liners (that I can remember)

Macyn pointing at my Ugly Christmas Sweater before work.

Macyn: "awww pretty, Mommy! I like it!"

She also likes to call me, "Mommy Marie!" and Josh, "Daddy Dean!" She is really into asking her something silly, and she responds with a, "nooo" in a silly voice.

She has also picked up the guitar hero guitar, "tunes" it, and sings and dances while playing. Once she is done she goes, "Again? Again mommy?! okay!!" and continues on.

She can also fully dress herself, but sometimes has trouble remembering her pants have two legs. She's still a little OCD about washing and cleaning everything, but we try and tell her its okay to be a little bit dirty. She likes to take care of her babies and will play for hours being "mommy."

She has a good memory as well. Last night, Josh went to Walmart when I was putting her to bed. She woke up this morning and goes, "Daddy at walmart?" She also had a meltdown when we put the first present under the Christmas tree and told her she couldn't open it. We solved this problem by letting her help wrap the presents.

The only downfall is, she remembers what everyone got! Not even kidding. Even two weeks later, if you ask her, she will tell you. Since she helped wrap all of them, don't be surprised if you end up with 3 bows, 2 name tags, and one big piece of tape across the front....and if you want your Christmas presents to be a surprise, don't ask her what you got!

Ugly Sweaters, Jumpers, Oh My!

Today was the 2nd annual Ugly Christmas Sweater day at work. Unfortunately, I didn't win the prize - even though I was the only one with "technically" a Christmas sweater. Oh well, no hard feelings here! How do you compete with someone dressed up like Eddie for Christmas Vacation?! You don't. Period.

Marketing crew

Senior picture inspired

Awkward family photos inspired

Mom's sweater closet :)

Happy Birthday Daddy!

Since we had to stay home and celebrate Dad's birthday, we let him open some presents! Okay, 1 birthday present and 1 Christmas present, but still presents nonetheless.

Happy Birthday, Daddy! and Hubby! Glad you are older than me! :)

Mondays with Macyn pt. 2

Lets see here, on today's agenda for Mondays with Macyn, we didn't have too much planned. Only things planned were, go to the doctor, make Dad a birthday cake, make Dad lunch, go to daycare party, go to Great Grandparent's anniversary party. Well, we did most those things, and nixed out a couple as well. 

Here is how our day went. First, we went to the doctor to have one of Macyn's tests read. Came back (false) positive, and now she can no longer be in daycare. Cross off daycare Christmas party. Cross off anniversary party..... I was quite bummed because I was really looking forward to do an activity with her at daycare, and she didn't get to open the presents we bought. Anyways, we still did some fun things even though we were confined to the house. Such as, playing hide and seek!

Here is one of Macyn's favorite hiding spots. Behind the curtain - she always likes to pop out and laugh hysterically. We then decided to make Dad a birthday cake!

Macyn helped making Dad's birthday cake (and helped eating the Reeces pieces)! She kept saying, "yummy!" and shoveled handfuls into her mouth! After the cake was finished decorating, we decided to make Daddy's favorite casserole - Taco Hot Dish.

Macyn was a big help of crushing the chips and adding the cheese. I may or may not have taught her how to take a cheese shot :) 

After lunch we took a nap and hung around the house. It actually didn't matter too much, because it was Dad's birthday too. It was nice spending it together as a family!

Taco Hot Dish

Here is a simple recipe - but pretty dang good!

Taco Hot Dish

2 lbs. hamburger

8 oz. can tomato sauce

1 pkg. taco seasoning (we use Ortega)

8 oz. shredded cheddar

8 oz. shredded mozzarella

8 oz. corn chips (I use a little more)

Brown hamburger and add taco seasoning and tomato sauce. Layer 1/2 the chips, taco meat, cheese, and rest of chips on top in 9x13. Bake at 350º for 15 minutes or until heated thorough.

Happy Birthday Caden!

Our big boy nephew, Caden, turned 1! Let me tell you, he's a pretty laid back, cool kiddo. I wish I could know what that was like - I'm just used to a 2 years going on 13 high maintenance young lady ;) But, we love her just as much! Anyways, it's party time!

Presents! and bows!

Caden with his new firetruck from Macyn

She wasn't so sure about these party things!

Sorry, Macyn. No presents for you this time

First taste of cake

Happy Birthday, Caden! We love you!

Mondays with Macyn

Mondays with Macyn have officially started! I had to use up vacation time at work before the end of the year, so I decided to take off EVERY Monday in December, save money on daycare, and spend it with my little peanut. We had a great day together, and here is a run down of all the "fun" we had.

First, we woke up and she was adamant about watching Minnie Mouse in our bedroom in "Mommy and Daddy's bed." She then said she wanted, "umm....waffle, juice!" And there ya go - breakfast in bed with a 2 year old!

 

After breakfast in bed, I decided to make a grocery list Macyn had to make one too, only using different colored pens. We then make our way out the door to the post office, bank, and groceries where she got to ride in the cart with a car attached! Let me tell you, it is super nice to go shopping on a weekday in the mornings, especially with a 2 year old who can be good, or pretty dang naughty. Today she was somewhere in between :) She was adamant about opening up a bag of cheetos and sitting on the bench by the door, so I let her. Don't be surprised if she ends up on People of Fareway .com (kidding).

We then came home where she was big help putting groceries away (after convincing her she didn't have to stay in the car to eat her Cheetos)

She then decided to take all the muffin tins and make cupcakes in her kitchen. After I was offered about 10 cupcakes, I convinced her to watch a movie.

After that we watched Cinderella, that we borrowed from the library. It is still one of my favorite Disney movies of all time, and I was pretty surprised she sat through 1 hour 10 minutes of it! Its funny watching it with a 2 year old commentary. "Inderella crying? Her mommy go? Mommy coming soon? Its okay inderella." 

We then made lunch - Easiest Soup Ever, and Cheesy Chicken in the crockpot for supper. Shorty after lunch Macyn went down for a nap, and so did mommy. I could really get used to a mid afternoon nap everyday :)

In the afternoon we decided to tackle Scotcheroos and Monkey Bread. Macyn was a HUGE help during monkey bread. She put all the pieces of the dough into the cinnamon/sugar mixture, I would mix, and she would take them out into the pan. She had to stop what she was doing a few times and announce, "Big mess, Mommy!"  "All dirty!" (note, since these weren't exactly sanitary conditions - licking fingers, etc. only our family will be eating these!)

 

I then threw in a Veggie Tales Dance of the Cucumber DVD. There was a nice little moment on the last song called "My Day" sung by Junior Asparagus. I couldn't find a video, but you can listen to the song. While Junior Asparagus was singing in bed, Macyn kept sayind, "awwww, cute." And especially the way the past few weeks have gone, the lyrics were absolutely perfect. Who knew Veggie Tales would describe things so perfectly?

And so it’s good to know
How much you love me
It’s true, the bible says you do
You really love me
Your love was with me all throughout my day

In my bed so quietly
I rest in knowing: God loves me! 

Anyways, I had a ton of fun with Macyn on my day off. I think I could really get used to Mondays with Macyn! Until next time.....