Nothing to Update

I wish I had something exciting to update on... but I don't.

Things have been pretty quiet, we're just enjoying our time together.

I finished up my last interim class (I had 2) last week, I've got this week off, and classes start back up on Monday the 31st. I've also been in and out of work when my schedule allows.

Our weekends haven't been any more exciting. We've been going to Matt's hockey games now that they are home again. Brode was a bit hesitant about them at the beginning of the season, but after the entire month of December off (all away games) we started going again and he has loved them. Last week he has his coat, hat, and mittens on 20 minutes before we needed to leave and he was demanding us to get off the couch and get ready to go. Personally I think he likes going because, Grandpa, Grandma, and Grandma Beth all go so he gets a lot of attention and they also get him skittles, popcorn, and chuck-a-bones.

Saturday night at the game Brode got a poster with all the players pictures on it. We hung it up in his bedroom and he has about 3/4 of it memorized. If you ever need to know an Ice Dog's name, ask Brode.

A few weekends ago we tried out a few of our new Christmas presents. First we got out the ice cream/sorbet/yogurt maker. My friend Leah was here from Madison so her, Brode and I whipped up some creamy vanilla ice cream. Second, we got out the Belgian waffle maker. Brode love his waffle topped with syrup, whip cream, and blueberries.

Sunday we got outside and cleaned up a little bit of snow we had on the driveway. Brode likes his sled, but doesn't get overly excited about it. When I brought him in the snow it didn't go down the hill very well, and when I ran on the driveway he yelled at me to walk. After I walked him around a bit I figured it was his turn to walk so we buckled Pooh Bear in and Brode gave him a ride. He was extremely proud of himself!

We had one big accomplishment this week - Brode wore his slippers!If you know us well you know that Brode will NOT change his shoes. By will NOT, I mean that the days that he has to get a new pair because there is a hole in the bottom and velcro doesn't stick I sent him to day care in the new identical pair where he cries for an hour until breakfast distracts him. He has been doing better lately. We did get him a new pair that he was actually excited about and he has never complained about his snow boots. He hasn't stepped outside of those boundaries much into the water shoe-sandal-slipper category. I don't know what came over him this week but he put he asked for help putting slippers on and then wore them two nights in a row. (He hasn't worn them since, but we'll get there)
These alligator slippers were from St. Nick two Christmases ago. That's how long we've been waiting, trying, and hoping he'll wear them!

Why?

It has happened.

Brode asks "WHY?" a lot!

He has simply asked one "why?" before, but yesterday it started. I'll set the scene for you:
I'm in the kitchen packing my lunch for work and getting Brode some juice. He is standing on the couch, peeking over the back watching me with that innocent little face.

"Mom I want some lunch."

"Brode we haven't even had breakfast yet. You're going to go have breakfast at day care and then lunch later."

"Why?"

"Because breakfast comes first."

"Why?"

"It's important. It goes breakfast, lunch, dinner. Breakfast, lunch, dinner."

"Breakfast, lunch, dinner?"

"Yes Brode."

"Why?"

"That's just what they're called. You can't have fruit snacks for breakfast."

"Why?"

This is about the point I looked up from my sandwich and realized I had answered a handful of the same questions over and over. Brode still does not understand why he needs to eat breakfast before lunch, but he was pretty happy with taking his juice and half mini bagel and heading to day care.

Whew - hopefully I'll have more answers next time.

Wrong.

Scene:
I'm laying in Brodes blue car bed in his bedroom. Yes, Full House - Uncle Jessie and Becky can't get Nicky and Alex to bed - style. He tucked my toes in then started playing with toys and books.

"Brode, you need to come lay down."

"Why?"

"We're done with books. Lets sing songs and go to bed"

"Why?"

"Because we're all tired and need to wake up early."

"Why?"

"You'll be crabby if you don't get to bed."

"Why?"

"You need a lot of sleep."

He walked over to me, leans over the side of the bed 3 inches from my face and with that high pitched, innocent voice: "Why?"

"Lay down."

It's only the beginning. He is so innocent and he even throws his hands, palm up into the air and I can't help but laugh but I dont know if its curiosity or annoyance that wants to ask.

Craniosynostosis: The Jorge Posada Foundation

(Pre-warning - Brode's CT scan snapshots are featured below, may be awkward for those who don't look at body parts like some of us every day - yes, I forget that it is not normal for some people to hang out with cadavers and x-rays. Also, another warning - it's long!)

I have mixed feelings about cranio. I second guessed this post many times. I don't want to dwell on the situation, condition, term, and past, but it has brought us right here and played a large part in our entire family's life.

I say this with caution, but we're 98% out in the clear. Our craniosynostosis journey is in the maintenance phase, but every day other kids and families (roughly 1 in every 2000) are starting their cranio journey. I have often written about Brode and his experiences and battles with the doctors, hospitals, and surgeries but I haven't described the condition or the level of awareness that is currently growing.

Jorge Posada is the catcher for the New York Yankees. His first child, Jorge Luis, with his wife Laura Posada was diagnosed with craniosynostosis in 2000. After eight surgeries Jorge Luis is a confident little boy with the same scar as all of our fellow cranio kids. The Posada's have written their story, together with their family, fellow baseball players, and doctors and published "The Beauty of Love". I finished the book in a day and a half this week and although I loved it, it was extremely hard to read as it pulls greatly on the heart strings. All of the words narrated by Jorge and Laura are so real and defining to the exact moments we have sat through.

It was intriguing to read the Posada's family narrative and find our story weaved within theirs. These quotes define the exact emotions we had when we got the first diagnosis:

"the mysterious illness would be an ever-shifting phenomenon, one that would elicit much anguish and little relief."

"our son's well-being became our unspoken mission, fueled by what became our unshakable determination to stay positive."

PRE-OP CT SCAN - June 2009 - The head Brode was born with and provided the diagnosis.

We moved into surgery, the crucial defining moments of how this disease would progress. Laura describes it perfectly:

"The life of my son was now in the hands of those individuals and their team of nurses, a gaggle or strangers whom I had no choice but to trust."

We knew our surgical team, but met handfuls upon handfuls of doctors and nurses the day of surgery that we knew nothing about and would provide care.

After surgery - recovery:

"the doctors and nurses came out and told us that the surgery had gone well, buy nobody really explained what that meant. They were reserved and matter-of-fact in their explanation, making it all still feel so incredibly vague." I remember Matt and I walking out of the consultation room looking at each other asking how the doctor could be that calm and brush off the entire explanation when we were freaking out!

Recovery continued:

"It is the cruelest of punishments to have to see one's child this way, a traumatic image that has the power to haunt."

"He heard her voice, you saw this genuine little start to form on his face. That exact moment that he heard the sound of his mother's voice, he knew that everything was going to be okay. He was so strong. I remember thinking that if this kid can survive thing, anything is possible."

POST-OP CT SCAN 1 - September 2009 - Brode's remodeled head. Replaced forehead and 5 plates to hold bones steady and promote bone growth:

At this point we worked together with doctors to watch for changes and take precautions for scar care until the following surgery. Jorge said about Laura: "It was as if she now considered herself an active participant on our son's medical team, and she took it upon herself to tend to him like a true professional." Yes, I have papers, files, and notebooks full of all the paper work, notes, and questions we asked when first meeting. The doctor takes out his, I take out mine. I also very much became Nurse Malorie when 10 days of scar care each time three times a day brought out the gloves, antibiotic, peroxide and Q-tips!

We waited for one year:

"Our experience ultimately taught us that the biggest challenge facing craniosynostosis is the need to create a sense of urgency." One of the most talked about topics on cranio support websites is the torment that waiting brings, but sometimes it's for the better. Healing takes time.

POST-OP/PRE-OP CT SCAN 2 - June 2010 - We were able to see all the new bone Brode developed closing soft spots. This CT served as the model for surgery numer 2 where they took out the plates and filled in the remaining holes (very large one on his right, not visible).

Although there were many parts of the book that brought back horrifying memories, I also particularily like this one, "even in that dark vortex of bad memories, there were some very special moments." The second surgery ecspecially, we had laughs. Although we were sitting in ICU after being awake for 24 hours Matt and I sat with Brode as he screamed to put his shoes on and go for a walk because he loved those shoes so dearly. We knew he was still there even if swollen. This video is from the first surgery:


There were multiple moments that he would show his personality, like recognizing Grandpa's mustache, that gave us all smiles!

"part of dealing with an illness such as craniosynostosis is to learn how to embrace the uncertainty that it comes with and simultaneously do our best under such indefinite conditions."
We hope to complete a CT scan June 2011 to see if all the bone has healed and filled where the plates were. If not, we're back to uncertainty.

The Jorge Posada Foundation was created with many goals in mind including awareness, assistance, and mentoring. Through fundraisers, brochures, and education to new doctors and families the foundation spreads awareness and the ability to recognize cranio. Laura pointed out in the book that we empasize particular conditions that everyone is aware, like down syndrome, of during pregnancy when a condition such as cranio is just as common but extremely unknown. Early recognition is essential and many people, even doctors, cannot recognize it. Brode has been viewed by every pediatrician in our local office where they have each taken time to examine it if they have not seen it before so they are aware. An assistance program is another aspect of the foundation. Many cranio kids need multiple surgeries that can be assessed at six figure costs each. Families are often shut out by insurance companies due to the belief that is a cosmetic surgery by a plastic surgeon, but they are clearly failing to see the life threatening issues that can come along with the disease. Lastly, the foundation offers a mentors program - and what do you know, I am one of them!! Families who have been through cranio from all over the country are joined together in this mentor program waiting for families to assist. Newly diagnosed families are able to contact the foundation where they will be matched with a mentoring family in the same area, with the same doctor/hospital, with the same type of cranio (there are several), or if something specific about the situation like a childs age is present they can be paired based on those conditions. Through the program information, advice, and support is spread and encouraged!!

There are also several websites that offer support, two being cappskids.org and craniokids.com. Definitions and descriptions provide information to everyone interested, forums are maintained for families to discuss current situations and ask questions as well as develop friendships through something we all have in common. Both sites promote awareness through clothing, hats, headbands, and specifically cappskids provides free "Proud Cranio Family" blankets to children on surgery days!

I thought having Brode would create who I am today, and although it has changed me, cranio has had just as extensive of a change. Sitting in the ICU, it is difficult to grasp where you are spending summer vacation as a 20 and 21 year old. Laura said "I remember there was a very sick little baby in the next room whom we would see every day with his mother. I never found out what was wrong with the child but it was evidently serious, and I felt a sense of compassion towards the mother who, like me, was trying to survive emotionally under such traumatic conditions." Our summers in the ICU were joined with children with cardiac conditions, near drownings, lawn-mower accidents, burn victims, and shooting victims. Seeing children in harsh conditions breaks your heart, but passing the parents in the hallway all day every day created a silent relationship we still wonder about today. Every appointment we go back, driving past the ICU windows we always say out loud "I wonder where they all are and how they're doing."

Jorge started: "In this journey we discovered a love so pure and real, a love that had nothing to do with our egos and everything to do with our family. Just like that sense of 'what matters' was turned on it's head, an unexpected paradigm shift that ultimately brought us endless transformation." Endless couldn't be more correct. Responsibility, generosity, and dedication have all been exemplified with all of us as we deal with a serious issue and develop a compassion for Children's Hospital and everyone involved with it.

I'll finish with one of the strongest quotes the Posada's feature in the book:

Start by doing what's necessary; then do what's possible; and suddenly you're doing the impossbile.
-St. Francis of Assisi

Snowman

The week of Christmas we got a snowfall that had the perfect snow for building a snowman. I tried to talk Brode into getting outside because we had the perfect kit for building "Frosty" but he wanted nothing to do with it. He loves going outside at day care but these days he wanted to stay in.

2 days later I finally got him out, but unfortunately it wasn't packy anymore. We worked with what we had and Brode made his first snowman!

This little guy stands right outside our front living room window so every once and a while throughout the holiday season Brode would walk by and say "I wanna see Frosty, Look there is Frosty! Mom see Frosty?"

Frosty is long melted by now after we had 40 degree weather this past weekend and the grass started to show, but now we always have pictures of Brode's first snowman of many to come!

Bulding our 2 foot tall snowman didn't take long so we needed more outside activities to keep Brode busy and get the bundling up process worth it. First we shoveled:

Brode seems to think shoveling the grass is a much better idea, and instead of throwing it into the grass it goes straight in the air and lands right back on him.

Second, we filled a squirt bottle with blue food-colored water and turned the snow blue!

A Year in Review: 2010

Before I wrote this post I went back and read 2009's year in review post. This paragraph summed up the post:

"I'm not sure what to think about 2010. Things won't be much different, but you can never anticipate what is going to happen. We will all continue working in our same jobs, I will attempt 2 more semesters of Kinesiology, Brode will undergo the same Craniosynostosis surgery yet again, and we will watch our baby turn into a troublesome toddler two-year old."

I couldn't have been more right about things this year, but I also couldn't have been more wrong about a few others. The year always seems to go so fast, but looking back at pictures and particularily Brode's health notebook (yes it is all kept in one beloved notebook with every detail otherwise appointments blend together) we have been through a lot - an adventure filled year.

January '10 - I completed an interim class while working as Brode attended day care.

February '10 - Spring 2010 started where I completed many of Kines classes including biomechanics and exercise physiology. I also celebrated my 21st birthday with friends! Brode kicked off the year with a set-back: Right Lung Pneumonia, otherwise known as pneumonia number 4 for our little man. Still no answers as to why.

March '10 - We met Dr. Toivonen, our hand surgeon. He diagnosed Brode with left trigger thumb. The agreement to wait six months was made before any surgery discussions arose. Set-back number 2, Brode got his first case of croup - mom and grandpa lost lots of sleep. Brode was also given glasses that completely fell through and we requested a new doctor - that was a fun week of frustration!

March '10 - May'10 - School, work, and day care continued. We made trips to LaCrosse and the Mall of America. Pink eye, first ear infection, and a full body rash breaking out in the entire day care kept us home several days!

June'10 - Spring semester ended and I spent my time working full-time while taking 2 online summer classes. We made weekend trips to the cottage and enjoyed time with friends. I went to Country USA with friends.

July '10 - Brode had a pre-op CT scan on the 12th to prepare modeling for his upcoming surgery. Later that week we went back down to meet our new ophthamologist where he was diagnosed not with far-sightedness as previously thought, but hypertopia/4th nerve that affects his tracking. July 28th Brode had his second craniosynostosis surgery (plate removal and cranioplasty). The 5 titanium plates on his skull were removed and holes were filled with bone grafts. We spent 4 days in the hosptial then a week at home for recovery.

August '10 - Brode's 42 staples came out on the 9th and we were back to summer vacation! My summer classes ended and I got a full 2 week break before fall semester started. Brode spent a long weekend with Grandma and Grandpa when Matt and I went the annual LaBarge family camping trip.

September '10 - Fall semster started and Brode turned 2! We had a large Mickey Mouse party for Brode at our house to celebrate! Brode had his 2 year check-up late that month where our doctor indicated that although Brode has had many health issues he is very advanced for his age. He knows well beyond his fair share of words, knows his ABC's, can count to 20 alone, memorizes songs, started potty training, and speaks in full sentences that are rarely misunderstood. With his birthday Brode moved up to the 2 year old room at day care! He has been doing great, still has the same friends, and really enjoys the new teachers. Brode loves getting outside more in this room, doing independent art projects, and he comes home with a new song every day!

October '10 - Brode had his left trigger thumb released by Dr. Toivonen at St.E's. A quick in and our procedure with 10 days of bandages fixed the problem and his thumb is good as new! Brode also missed the Halloween memo and failed to celebrate even though his Elmo costume was adorable.

November '10 - December '10 - We celebrated Thanksgiving and Christmas with friends and family. School ended and Brode became more spoiled than ever, but you heard all about that! Brode also had re-checks will all of his doctors and everyone is impressed with his progress, great news!

What a year! Although Brode wasn't on the healthiest side of things, we were blessed with amazing doctors to help us through! Health insurance saved our lives this year and hopefully we can now take big steps forward. We were also blessed with tremendous amounts of friends and family that joined us in good times and in bad! My poor friends deal with all my stress, but we always have fun:

2011 - I can't even start to make a prediction because I have NO idea where I'm going to be! This is the year of decisions and moving on. I will be graduating in May and will then be completing an internship. This causes my Kimberly Clark placement, after 2 and 1/2 years to end and me lost in the job search. I'll need to pick an internship mid-spring that will last until August. After that it is all up in the air. I will apply for 2012 grad schools in the fall, but will hopefully find a job with my bachelors until grad school. I always had "I have to go to high school, I have to go to college" in my head, and now I have no idea what comes next. We'll find out - bring it on 2011!

More Christmas and First Ice Experience

Our Christmas continued through Sunday, and of course Brode got MORE!!

Sunday night we went to Matt's aunt and uncles for Christmas with the LaBarge's. We had a great dinner and opened presents then finished with the family tradition of his uncle's homemade ice cream.


Brode got a handful of new clothes that he desparately needed as well as a Thomas train with a few cars, a stuffed Grinch with the "How the Grinch Stole Christmas" book and a stuffed dog named Jingle that came with a book "Jingle All The Way". Brode really enjoys reading with Jingle because he responds by barking and talking when certain lines in the book are read out loud.


Matt and Brode also got toys from Grandma Beth that they can enjoy together.


I jumped too quick to my favorite gift before heading to the LaBarge's. There I received a present from Matt and his mom that I think quickly became my favorite. I do still love my coat a LOT, but the Kindle I got is something I also really enjoy and I already got a few books on it and I even read 1/4 of one last night. The Kindle actually surprised me, it wasn't quite what I thought it was going to be particularily in the eye straining area. There isn't a 'screen' look to it, it is very much just like a book page so it is not hard to read for a long period of time.



Monday we finally got our first full day at home to simply play with toys. We got out Brode's gator golf and tool set that he really enjoyed! He spent some time on his trampoline and I got all of his new clothes organized.


You may remember the last post I talked a bit about GeoTrax. Well we couldn't wait to expand, so we returned one of the presents we had gotten Brode that wasn't quite in his age group yet and we got the train to go with his airport! Grandpa and Brode set it all up Monday nigt and he loves it! GeoTrax will definetaly be something we will put on Brode's gift lists from now on. There are a lot of little and larger parts to collect to create an entire town! They are also easy to use and perfect for his ages and many to come.

Tuesday morning Brode returned to day care, and NOT voluntarily to say the least. He lost so much sleep over the weekend and was spoiled with 5 days at home so he was not ready to return. Waking up and getting dressed was ok, but he refused to put his coat on and screamed "no go see my friends!" all the way there. At one point I needed to pull over and rebuckle his carseat because he pulled his arms right out and started climbing out. Our worst morning by far, he has cried about getting ready before but this was unbelieveable. Completely tested my patience. Those terrible twos are coming on strong so we will greatly be working the no spoiling and punishment area. Whew, boys.

This week we're busy as we plan many activities while we're all off of work. Tuesday my friend Tiff from LaCrosse came and visited because we haven't seen her in months, we really needed to catch up! After Brode showed Tiff all of his new presents we bundled Brode up and took him to our friend Kelsey's house to play on her pond - Brode's first ice experience!


He was a bit hesitant at first, but much better than I thought. He started walking, then moved to a bit of a shuffle and by the end he attempted running. The girls loved watching him play hockey and Brode was excited to try out all of his skills on the ice. After over an hour of playing we went inside for hot chocolate and lunch. Once deciding that nap wasn't happening Brode was begging us to go back out on the ice. This time around we all got our skates on and Brode watched as we skated everywhere. It definetaly won't be long until he has his first pair of skates (we had them picked out and passed on them, but now knowing he loves it we may need to change our mind)!


After a long day of playing we sent Brode to Grandma Beth's with yet another one of his christmas presents. He got this backpack from my mom. Brode has been really into grabbing a lunch box or bag and saying "I'm going to work" or "I'm going to school" as he walks towards the door. He loaded his Tigger and blanket up in the backpack and headed off to Grandma Beth's for a sleepover. I couldn't help but think he looked so much older and started to completely dread the day he goes to Kindergarten.

Brode stayed at Grandma Beth's overnight because our family went to Jeff Dunham at the Resch Center in Green Bay. He is an amazing comedian that definetaly gave my abs a workout from laughing so hard for two hours straight.


The rest of the week we have a neighbor 'kid' night, work, lunch dates and celebrating New Years! It sure is the busiest time of year!

Failure to Communicate: Christmas 2010

Everyone in our house loves to shop for Brode, and we all like to get the best present. This year, there was a major lack of communication as we kept everything quiet and wouldn't tell each other what we had. Brode ended up with WAY too much out of this.

Friends and family have been asking if he had a good Christmas and liked his presents so I'll give a little summary in here.



Christmas Eve we got dressed up and went to church as a family. Brode behaved very well and loved watching the children's choir. Afterwards we headed home for a quick dinner, then off to my grandparents (mom's family). There Brode was given his first big toy from my aunts, uncles and cousins, a Packer tackle dummy. He loves to punch it as well as drag it around the house.

Brode also got a tool set with 40+ tools in it from his Godfather! The hat is his favorite part.


After a VERY last night for the little boy we got home and into bed so Santa could come. Brode woke up to an overflowing tree the next morning. Gifts from our family included:

A basketball hoop from mommy. He has been begging for one!

A Little Tikes grill from Grandma and Grandpa. He made lunch for everyone today.

A Packer helmet, jersey (with pads) and pants to go with his tackle dummy. He LOVES it, wears it everywhere.

Geotrax Airport. I am not that familiar with there, but they are remote controlled and move along the track. There are tons of additions to make an entire city. After seeing how cool they are and how much Brode likes it we were wishing we would have known about them sooner and could have coordinating an entire town!

His first hockey helmet! (our Craniofacial surgeon would be so proud of us)


Brode also recieved a ton of other stuff including UNO Moo, Gator Golf, Thomas matching, TONS of clothes, hockey ornaments, Potty Time Elmo, DVDS, CDs, and play-doh. It just goes on and on!

Lastly - his largest present of the year - that you are seeing before him: A TRAMPOLINE! Grandpa and Grandma threw out all the rules from his surgeon and got him this huge tramploine that is currently in our basement. He has only seen a picture but we're confident he will love it!

It took a long time open presents but once we were done we had a big breakfast together then put Brode right back down for a nap. It wasn't long and my dads family was all over for our Christmas together! Brode had fun with all the other kids. He got a t-ball set, clothes, and Little People truck that he just loves!

This morning we let Brode sleep in and then headed to Grandma Beth's for breakfast and stockings. Brode got more movies, lots of candy, books, another basketball hoop (for grandmas, can you tell he really wanted one!), and a Crayola Color Wonder!

Tonight we're heading over to Matt's aunt and uncles for the LaBarge Christmas. I'm sure by the end of the night Brode won't know what to do with himself anymore.

He (and we) have sure been blessed this Christmas! We have had a lot of fun with all of our family, even if we are exhausted!

As for Matt and I, our favorite presents?

Mine is my new coat. I have had the same winter coat through high school and college and it had collected its fair share of dirt. I was ready for a new one. My parents got me an extremely nice brown North Face with a zip out furry fleece as well as a match hat and mittens. I am very excited about all of my new clothes and gift cards as well.

Matt is pretty excited about all of his new hockey gear. He got gloves, shoulder pads, and breezers as well as free skate sharpenings. He is also excited about all of his Under Armour and Texas Longhorns clothes.

We're both pretty excited that the Rivet family got Xbox Kinect as well. It's all base off of motion, you are the controller. It is a great gift that we can all participate in Grandpa through Brode so it should provide some good entertainment!

We hope everyone else had a wonderful Christmas and got everything they wished for and more!

Finished Fall Semester!

I survived fall semester! I know it doesn't sound like that large of an accomplishment, it being my sixth finished semester and all, it's nothing new. But really, I survived. In order to graduate in May and do an internship over the summer I needed to take 19 credits this semester. Yes, you read that right 19, but there is more. I needed my CPR/AED certification redone which put me at a good ol' 20 credits. Two of these are during interim that will be added into my GPA, but I still had 18 credits - 6 classes. Wonderful. I have no idea how this arrangement happened seeing as how I have 15 credits next semester and for 3 classes waived, but counting pre-reqs it came out that way. It made for a lot of time spent in Oshkosh (remember me ranting about Wednesday's 8:00AM to 9:00PM - not good!), but it's all over. TitanWeb told me today that 3 credits still need to be graded and submitted but I'm sitting with a 3.66 (darn B) keeping me in Cum Laude range for May graduation! The end is near!

Now, I was very happy about finishing the semester and finals, but I didn't get much of a break as I needed to take my GRE Wednesday (today). This put me on the couch reading that big purple book and studying the "GRE's 500 Hardest Words" until last night when I gave up and took a break with friends. This test, unlike others gives your scores back immediately and I have to say I'm ok with them. I'm well above what the grad school's I'm looking at want and I'm not confident if I tried again I would do significantly better so I'll stick with where I am.

So NOW I am officially done, besides work, until January 3rd. January 3rd will start a chaotic schedule of opening the school's fitness center at 6:00 for a few hours, taking a morning class, working, taking an afternoon class, and studying for the first week, then they all go online so I should get a bit more of a break. I'll take it - it's WAY better than 18 credits.

These next two weeks I'll be in and out of work, but we're going to take some time to celebrate the holidays and hopefully get outside in the snow! Last night we finally got some packy snow so we're going to try and build Brode's first snowman tonight! Our Christmas celebrations will start Friday night and go straight until Sunday night. We'll be lucky to get any sleep and poor Brode won't even have time to get all of his new toys out.

I cannot wait to see his face when he opens his presents. He is a little hesitant about Santa coming into our house, but excited too. The holidays seem much more exciting with a little kid in the house! I'm ready to get it all started! The week after Christmas I'm sure we'll be busy seeing all of our friends in town and playing with all the new fun stuff!

Everyone have a great holiday! I'll try and post over break as much as possible because we'll probably do a lot and get some fun pictures, but if Brode is as excited as I am about his presents we may never get a break!

Merry Christmas to All!

Milwaukee Monday

Only good news to come out of this Milwaukee Monday!

Yesterday we battled the icy roads and went down to Children's for a check-up with Brode's craniofacial surgical team and to see his ophthalmologist.

We were lucky to get the appoinments on the same day, and it was a good thing because both were very short and full of good news. Brode was nervous, he said "no owie" the second we got into the skywalk of the hospital, but we quickly explained we were just there to talk.

(Sticker for being a good boy)

First, we had our craniofacial appointment. We saw the nurse, then Dr. Denny and Dr. Braly came in to talk to Brode. They were extremely pleased with his progress. Dr. Braly took Brode's pictures for his file (they take one every time we are there, it is very exciting to see the changes through the entire journey) and chit chatted about sports and Santa while we talked to Dr. Denny. The outcome of the message was that the ultimate goal of the very first surgery and "problem" has been fixed and has remained fixed. If we were to see any backlash we would have by now. The number one thing to watch for is growth - Brode's head is growing well and he is staying on the charts, as well as entire body growth. He has maintained steady growth and has no developmental delays proving that we made the best decision for him and he has healed tremendously well. They were all impressed with how big and talkative he is now after seeing him in his ultimate low.

Our next step is to schedule a post-op CT scan to confirm that all of the holes that were filled in with bone grafts in the second surgery have completely healed and show no concern as a soft spot.

Next, we ate lunch and took a little break. Brode explored a bit before our next appointment.

Our second appoinment was in the eye clinic. We saw Dr. Ruttum last summer where we made a decision to wait 6 months before discussing any options. Our appointment went down the same route as the first as we decided we're not alarmed with his vision and eyes quite yet. He can see clearly, and more importantly out of both eyes. The eyes work together (no wanderers), giving no sense of rushing. He will need surgery on the muscles for tracking eventually, but because it is not distorting his vision at all we would rather take the time to diagnose which specific muscles are causing the problems. Until he can sit still in the chair himself, we're on the waiting train.

I have no ambition to put him through anything else, but I know he needs the eyes. Shockingly I'm much more scared about the eyes than the head. I know the skull surgery was right by the brain, but it was still very closed off. The eyes make me extremely nervous, how will he see the hockey puck if they mess up his vision? He bounced back well as a baby, but as a child how will he cope?

Besides a good progress report we also got more good news - our next appointments with both doctors are in 6 months. That puts us in JUNE! This last stretch of time (August 31 - December 13th) was the longest amount of time we have gone without going down to Children's since Brode was diagnosed in February 2009. We now have six months of no doctors - what a relief. Between surgeons, pediatricians, eye doctors and physical therapists it has been a long two years - we're excited for a break and I'm sure our insurance companies are too!

Finally, I have one last request. I don't typically put these types of things in here, but I have a prayer request. December 13th, 2008 (2 years ago from our appointment) Brode was 2 and 1/2 months old and was hospitalized with pneumonia for 3 days. The first day we were there we had to sit down and have the discussion with the doctor that if it were a bacterial infection he would be there for two weeks and we would face Christmas in the hospital. We soon found out it was only viral and were sent home, but for that split second I couldn't imagine spending Christmas there.

Many of the kids that were at Children's when we were there yesterday, will be there for Christmas. Kids walked around and were pushed in wheelchairs with a large variety of ailments, all heartbreaking to see. A downfall of staying there is knowing which floors are for different conditions. Pediatric ICU is the 4th floor - the windows are colored with marker, wreaths are hung, and cards line the windowsill. It was painfull to drive past those windows that were Brode's that are not painted with "Get Well (Name)" in them. I'm asking for a small prayer request for those children not celebrating at home this year, as well as all their families.

We're suckers for donating every time we see that Children's Hospital, Children's Miracle Network, and Ronald McDonald house logo to give to the children in that same situation Brode has been. Our second surgery, while we were in PICU, the police department came through and distributed Build-A-Bears with blue ribbons on them as well as coloring books and new crayons for every child in PICU. Even the smallet pick-me-up can boost a sick child's day. Brode's bear sits proudly in his room. Please give where you can and say thanks for those you have.

Snowed In: Part II

We were snowed in all day yesterday. The drift in our driveway is above my waist,making it way above Brode's head. I was NOT going to try and get my car through it.

Once we got through breakfast and ready for the day we quickly realized we would need a lot of things to stay entertained. Our first was an art project. While Grandma baked Christmas cookies Brode and I did some coloring/painting/sticking at the table. He colored a few pictures, and I cut a Christmas tree out for him to stick ornaments on.

After art we baked pretzels! Some of the neighbors were doing a fundraiser that we got an Auntie Anne's Pretzel Kit from. We got to work (a lot of work) and got messy! We were able to put the dough together and let it rise before Brode needed lunch and a nap.

While he napped I finished up our pretzels (Auntie Anne's would NEVER hire me) and worked on a project (a later post).
They lost their shape, but they were delicious!
After nap consisted of a lot playing, mostly hockey. We ran around downstairs, cooked up a pizza for dinner then took some time to wind down.

Brode wore his big boy pajamas last night after bath - he was extremely proud of himself.He kind of looks chubby in this picture, don't let it fool you. He still shovels the food in, but he hasn't gained a pound since the beginning of summer, he is still hanging in there at 28 pounds steady.