Raising the Ruxs

When Reality Starts in….

2011-01-23T13:06:00.001-08:00

This last week I gave my first public address on KT Syndrome, it was to the local first responders/ambulance crew. It was surreal. I am around Adam everyday, I often tell people about him and his syndrome, but I never realized that I truly do gloss over the dangers of what he has. That scares me.

It scares me on many levels, the first and foremost is if something were to happen and I wasn’t around, do my friends, family and daycare providers really know what to do? I found out as I was presenting that I really believe they don’t understand. So, I decided to go back to square one. I am writing up directives for him and having them handy for everyone around him. That has put one part of my mind at ease.

The other type of scare is one that I don’t think I can ease, at least completely. That is what WOULD I do if and emergency did happen. I tell myself and everyone that I have come to terms with my son’s syndrome, but have I truly? If I had to fly to Seattle with him and explain his medical condition to doctors and stand firm for his rights and needs could I do it. Honestly I think I will keep saying yes and live with the power of positive thinking. Even if it is a struggle…..

Let the Season Begin…..

2010-11-27T18:36:00.001-08:00

ever since last year, I have been trying to figure out the best way to celebrate Christmas. the gifts were out of control and ultimately the true meaning of the season was lost.

ODDLY ENOUGH I FOUND MY INSPIRATION FROM KATHY LEE GIFFORD! SHE WAS ON THE TODAY SHOW LAST YEAR, AND DISCUSSED HOW SHE BOUGHT HER KIDS 3 PRESENTS FOR CHRISTMAS. IF THAT WAS GOOD ENOUGH FOR BABY JESUS, THEN IT WAS GOOD ENOUGH FOR HER FAMILY.

THAT GOT THE COGGS MOVING IN MY BRAIN. I MADE A COMMITMENT TO MYSELF AND TO MY FAMILY THAT THIS YEAR IT WOULD BE DIFFERENT. WE WOULD CELEBRATE, JESUS’ BIRTHDAY; NOT JUST RECEIVE PRESENTS, BUT FOCUS ON GIVING.

I STARTED OUT BY HELPING ADAM UNDERSTAND THAT CHRISTMAS WAS BABY JESUS’ BIRTHDAY. NEXT I FOCUSED ON MAKING SURE HE UNDERSTOOD THAT WE NEED TO GIVE THINGS TO PEOPLE AND TO SHARE.

ABOUT A WEEK AGO, I WAS TALKING WITH DH ABOUT WHAT WE WERE GOING TO GIVE PEOPLE FOR CHRISTMAS. ADAM CHIMED IN.

OUR DISCUSSION WAS AS FOLLOWS:

A: mom I WANT TO GET PRESENTS FOR EVERYONE FOR CHRISTMAS.

M: WHAT DO YOU WANT TO GET THEM? AND HOW ARE YOU GOING TO PAY?

a: I AM GOING TO GET THEM RACERS AND I AM GOING TO USE MY MONEY IN MY PIGGY BANK! also on Christmas morning I want a cake and balloons and have a party for baby Jesus!

let the season begin!

Summertime Fun

2010-07-09T16:40:00.000-07:00

This summer has been going by way too fast. Izabella has made an abundance of friends, and we are making some wonderful, strong friendships. The kids are growing at remarkable speeds, and Olivia seems to be changing on a daily basis. New sounds, words, facial expressions. They all are adding up to one funny, independent little girl!

This was Miss Olivia playing today (Notice the fish lips)

Finding time....

2010-06-09T09:10:00.000-07:00

I have been trying so hard to keep up with the blog, but alas, with 2 little ones, a house, friends, and school work, I haven't been a good blogger. I promise to try harder.

Life here has been crazy. Miss Olivia started crawling a week ago and so now the fun has begun! She is such an observant little bugger. She watches everything around her, and then she doesn't hesitate to copy, once she deems the scene ok. I believe I have an extremely bright one on my hands, but then again, what mother doesn't think so.

Spring is suppose to be here, but it has been raining so much that we haven't been outside much, but when the sun shines, the dogs, and all go down to the river and fetch, run and picnic. Or, we are outside finishing up projects before Jeremy goes off on his fire season.

I will sit down later, hopefully, and start to back blog about the silly, yet wonderful things going on in our world.

Messages from the kids.....

2010-05-05T10:55:00.000-07:00

I am trying to think of inexpensive, meaningful ways to celebrate Mother's Day this year. What better the getting messages sent to you from your Grand kids (niece and nephew)?!? I hope all enjoy the messages and images of Goober and Tootsie...

Goober's Message

Olivia's Message

Tootsie 8 months!

Goober 3 years, 2 1/2 months

Goober and Olivia

Goober and Olivia

Reuben Hotdish

2010-05-01T20:49:00.000-07:00

I have finally gotten back in the saddle again when it comes to cooking. I had a dear friend in town this weekend and she inspired me to make a Reuben Hotdish. I searched the web and found recipe and then I tweaked it. This is the results, I hope you enjoy it as much as we did....

Ingredients

1 loaf rye bread (cut into cubes)
1 (16 ounce) can sauerkraut
2cups swiss cheese, shredded
1 cup sour cream
1 cup thousand island dressing
2 cups corned beef, cut into small pieces

Directions

Put half of the rye bread cubes into a greased sheet cake pan.
Top with the sauerkraut.
Mix the sour cream and thousand island dressing together and spoon half on top the sauerkraut.
Top with 1 cup of the swiss cheese.
Top with the corned beef.
Top with the rest of the sour cream/dressing mix.
Lastly, top with the remainder of the bread cubes and the remainder of the swiss cheese.
Drizzle the melted butter over all.
Cover with foil and bake at 350 degrees for 30 minutes.
Uncover and bake an additional 10 minutes.
Serve hot.

God through Osmosis

2010-04-26T12:24:00.000-07:00

As a family we have been attempting to get to church every Sunday. I came to the realization that if I was going to say I was a Christian, I better begin to walk the walk and talk the talk. Needless to say it is a daunting mission to walking into a church with a 7 month old, a 3 year old, and a husband who wants to go, but has no clue about what is going on.

There has been many weeks where I have thought, "Is this really worth it. Is Any one getting anything out of this?"

My answer came this past Sunday. While we were sitting in the pew waiting for the service begin, Adam yelled out, "There is a cross! That is where Jesus died, then he went into a hole!" It is working.

Later on during the service we were reflecting after communion, Adam was getting squirmy. I pulled him up on my lap and said, "This is a quiet time to listen to the music and remember that Jesus died for our sins." Adam snuggled into me and listened. It was working.

Today, we were talking with Auntie Kelly. I told Adam to tell Auntie about Baby Jesus. Adam's response, "He died on the cross, and the butterflies flew away." Butterflies were discussed during service a few weeks back, I never once brought it up.

It is working.

Keeping the Faith

2010-04-10T12:51:00.001-07:00

Yesterday was one of those days that a person wishes would just end. It started at 5:50 am with Miss Olivia deciding to get up. Next Goober peed in my bed and by 7:30 Jeremy had whacked his leg on the end table and was screaming. By 9:00 Goober had ran into a wall, fell over, hit his head on a shoe rack, and cut his lip open. By 10:30 water was coming in my drain in my basement.

Luckily I caught the water before the, newly remodeled, basement was flooded. We called our hero "Mike the Plumber" and he was here in a matter of minutes. After 2 hours of digging and poking it was determined that we have a collapsed sewer pipe and we will have to dig out the sewer line to find out were the break is at.

By this point I am on the verge of tears, I all I can think about is the money we will have to pay and how we are going to find it. I keep saying in my head "God has a plan" "This to shall pass". My usual mantras in time of crisis.

By 4 pm we realize we are going to be without sewer for the weekend. I am at wits end. I am so angry and frustrated I want to cry and scream. Just then "Terry the Handy Man" comes to my house to pull up some roots. I had asked him to come long before the sewer backed up and I was worried about paying him and paying all the other expenses that were to come out of this whole adventure.

As I am talking with Terry, the topic of money came up. I was lamenting about everything, then I pause and say to him, "God has a plan, and this too shall pass". He smiles and says yes it will. When he is done with his work. Jeremy goes out to pay him, he smiles and tells Jeremy, "Don't worry about it. Just give extra to church tomorrow."

God has a plan. He is watching, and when you believe you are at wits end, stop, breathe and remember, "He is watching you and will help you, if you believe".

God Bless Terry, Mike, and all the others who were there for me yesterday and everyday. I am truly a blessed person. AMEN.

Adam 3 year well child....

2010-04-08T11:55:00.000-07:00

Poor Adam has had a lot on his plate lately. He was told early this week that he was borderline overweight and that he needed to go on a diet. Of course, he is only skin and bones and I had to gently point out to the WIC person that his disability made his limbs bigger and heavier then the average limb... *sigh*

Yesterday he was told at his yearly check up that he has to start going back to pt and ot and now he gets to has speech therapy. This poor little boy has such a wonderful mind and his poor little body just doesn't want to keep up!

On a happy note, he is still projected to be about 6 feet tall and everything else about him is looking wonderful!

I can do it!

2010-04-08T11:52:00.000-07:00

I have had a terrible struggle with my weight as an adult. College didn't do me well, and then my 20's wasn't the crown moment in my life. Now I am in my 30's and done having children. It is now time for me.

Oh, I have dabbled in working out, different "fad" diets, the usually things, but this is my time. I am going to do it. I have gone back to the one program that has really ever motivated me. I am back on Weight Watchers. I am also working out 5 days a week.

I am going to do this.....

Stay tuned to watch my progress....

The Frog Tent

2010-01-11T19:13:00.000-08:00

A couple years ago Auntie Kelly purchased a frog tent for Adam. Yesterday he unearthed it in his room. He asked me to assemble it, so I thought why not! I had been holding onto it for a rainy day, and since we have been stuck in doors for the last few weeks I figured it was an opportune time to take it out.

Well, that was the best idea ever. This thing is about 5 feet x 4 feet. You can fit Adam, me and Jeremy into with room to spare! Goober sleeps in it plays in it and likes to have "mommallows" (marshmallows) in it. So THANK YOU AUNTIE KELLY!

Back in the Saddle

2010-01-04T18:50:00.001-08:00

Well if I have anyone left reading my blog, then that is a miracle. I can't believe that it has been 6 months since the last blog. My life has been so out of control. The end of my pregnancy went from icky to full out sucky.

It started in August with me get violently ill and ending up in the hospital. I was in and out of the hospital for the next 2 months and lost over 30 pounds. Granted loosing 30 pounds is usually wonderful, but not when it comes out your butt! Anyway after all of the trauma, it was pretty much decided that I have developed an autoimmune disorder. Most likely Crone's Disease, but I can't be fully diagnosed for about 3 more months, due to the early diagnosis and being able to show up on tests. Of course this has changed my life drastically. I no longer can have dairy, caffeine, and fatty foods. If I am having a flare up then salad is out too. It makes for an adventure in life, but I figure it is a good way for me to get myself back on track for the health department.

Adam has taken off when it comes to his vocabulary and height, he is predicted to be about 6 feet tall when all is said and done, and his vocabulary and humor rival those of a 4 year old. His wit keeps us all on our toes.

Jeremy is still the same, he obsesses over cutting wood and keeping the lawn kept up. He loves to spend his evening with the rug rats and can't get enough of HGTV.

Izi is wonderful, she spent the summer with us and was a wonderful helper, and I don't know what I would have done without her. She has shot up and is now all legs and her humor and personality reminds me so much of myself it is scary. I look forward to seeing her on her breaks and whenever I get a chance to come back to Minnesota to visit.

Our newest addition was born on September 2, 2009. She was 7 pounds 10 oz and was 19 inches. She is the runt of the litter and we are enjoy watching her grow. She is extremely laid back, but very particular in what she wants and when she wants it. I sure don't know where she gets that from.

Anyway, I am planning on making this a priority in my life for 2010, and maybe, just maybe I will keep this New Years Resolution up.

It's not a magic eight ball so don't touch!

2009-05-30T14:04:00.000-07:00

I am behind on blogging again, but whatever.

So last weekend I was in a department store looking at sunglasses when the elder sales associate came over and said, "Can I help you" I came back with my usual sassy remark "Nope we are beyond help" (and patted my stomach, which of course I should have even done). Her eyes lit up like a little kid at Christmas and she pulled out her paper thin scary hands and grabbed my belly. "Oh, now when are you due?" "September" *sigh*. Then I got the usual response. Her eyes got big and a look of complete sympathy came across her face. "Oh, well, uh, um, it IS almost June, so you really don't have That far to go."

Yeah, nice cover Granny, I am huge, I waddle, and now you made me feel like my stomach is a magic eight ball. Have a nice day.

Memorial Day Weekend

2009-05-25T16:51:00.000-07:00

Goober loving his Auntie Kelly

Both of them putting on their Cheese Faces!

Auntie Kelly came for a long weekend to help me get my house in order for the summer and more importantly to spend some quality time with Goober. We had a wonderful time. Kelly was our first guest here in Whitehall, so I got to show her all the important sights. The gas station, KFC and the coffee shop.

Of course any visit with Kelly includes some major shopping time. Which I found I had missed shopping with someone else so much. Of course Montana shopping can't even compare to Minnesota shopping, luckily I will get to do that soon.

We worked endlessly on my basement and Olivia's room. It was a marathon, but it was worth it.

Today Auntie Kelly left to drive back to Minnesota with Goober with her. She is a brave soul driving across country with a 2 year old. Goober is staying with Grandma and Grandpa and Kelly for a week and a half until I come to Minnesota to do appointments for Adam and to pick up the Iz for the summer. I already miss him, but he will get to spend some time with Jeremy's family and I know he is in for some adventures.

Finding a church

2009-05-19T17:17:00.000-07:00

Jeremy and I were both blessed to grow up in Parishes that were exactly what we needed. I grew up ELCA that was traditional, we had Psalms sung and a beautiful organ that echoed throughout the church.

Since leaving Minnesota over a year ago I have really struggled to find a new church. Either it is too liberal or too conservative. Not enough kids or no kids programing. At first I was adamant to stay with in the Lutheran or Methodist ideologies, but I am now venturing out and exploring other options. I am finding that my belief system doesn't fit into what each church stands for. How much does a person bend? What beliefs are able to be altered? Do I attend a church just because it has a great kids program or do I attend a dying congregation because it better matches my beliefs.

"Let us consider how we may spur one another on toward love and good deeds. Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another--and all the more as you see the Day approaching." - Hebrews 10: 24-25

First Real Day of Summer

2009-05-19T17:10:00.000-07:00

Yesterday was the first extremely warm day of the year. We hit 91 degrees with no wind. It was gorgeous. Goober and I spent most of the day playing outside. By the time it was bedtime Goober didn't even make a peep when I put him down.

We started our lunch out sitting at the picnic table.

That quickly led to having lunch ON the picnic table!

The Almost Perfect Day....

2009-05-17T18:12:00.000-07:00

I have been reflecting upon today, and decided that it is one of those days that I will remember forever and how I wish that my little 2 year old would be able to.

We planted flowers, and looked at bugs, horses, butterflies. We traveled to a greenhouse and saw so many flowers we didn't know what to do. Adam helped me plant flowers, of course that meant I gave him broken flowers and he would dig a hole and shove it into it. I taught him how to wave to people and say Hi.

We managed to have a water fight as I was watering the flowers. Then I got to spray water as Adam would climb under the water and laugh. We ended our day with KFC for a treat, and a ride around town listen to classic country as I told Adam about Ommi and spending my summers at the lake swimming and listening to this kind of music. Now it is time for a bath and then off to snuggle.

You ask why isn't today perfect. First DH left for New Mexico today and Adam won't see him for a month. Second, I forgot to take a single picture during all of our adventures!

Oh well, I guess I will have another almost perfect day and maybe I'll remember to take a picture or two!

It is days like this that make you smile.

Olivia's room...the beginning

2009-05-15T17:28:00.000-07:00

I was determined not to show any pictures of O's room until it was done, but I just finished putting her new crib together and thought people might appreciate how cute it is.

I should interject that the highly intellectual individuals Jeremy and I are, we managed to loose some critical parts to our old crib. I went crib part shopping today and didn't find a replacement piece that would do, so shucks I just had to go shopping! Of course this beautiful crib and dresser (which I pick up tomorrow) wouldn't be possible with out the nice early Christmas present from Grandma Diane. Thanks Grandma!

For the love of Oswald

2009-05-15T08:05:00.001-07:00

My son never stops. He is either playing talking or running. Except for one hour a day when Oswald comes on Noggin. He actually reminds me to turn the station if we don't have it on!

This my typical 9 am hour...which equal peace and quiet for mommie

The verge of potty training...you think!

2009-05-13T11:40:00.000-07:00

Last night Goober took it upon himself to call me into his room at 3 am. The conversation went as such:

Me: Goober are you ok

Goober: Stinky, Icky, Potty, Off! (now repeat this is very aggravated manner)

Me: Your diaper is just find (I do the usual squeeze test)

Goober: NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

Me: Ok I'll change you (I do so)

Goober: Otay

Then he is asleep before I get out of his door...I guess it is time to try again. =)

It's a Girl! And the day that followed.

2009-05-09T15:56:00.000-07:00

She actually split her legs so we had a clean view of what was in between. It made me hope that this was not a sign of what was to come!
The ultrasound tech liked us so much she gave us 3D shots for free!

The ultrasound was actually the low point of Friday.

After my ultrasound appointment I went in for my monthly check to find out that my ultrasound showed Olivia to be at about 22 weeks and my stomach is measuring at about 24 weeks! Mind you I am only 21 weeks along, so all signs are pointing to me having another BIG BABY!

After my appointment I was forced to go to Wal-mart, which its self usually sucks, but on a Friday afternoon, it is beyond sucking. I picked out my paint samples and Frank The Felon, who I believe was getting high on the fumes, managed to break the printer and then tell I would have to wait for the order to be filled.

So I went to do some other shopping. Unannounced to me it was officially "Wheel Chair Day" at Wal-mart. Of course these people had not passed wheelchair safety and probably were too old to be licenced as real drivers. As I was trying to dodge head and rear end collisions, it occurred to me that you can't say "excuse me" to someone in a wheelchair, it just seems rude. Why is it that way. I mean it someone is hogging a walk way I should be able to ask them to move and not feel like I am the most insensitive dork on earth.

Anyway, I made it back to Frank and he still hadn't filled my order, so I bucked up and asked for him to please just write my order because I was in a hurry. I truly believed at that point that he was either going to shot or stab me. At last my order was complete. I managed to dodge 15 more wheelchairs and check out. By now I was about 2o minutes behind schedule.

I decided to take the back way home thinking I would be able to speed and make up some time. Oh, no, not me. Apparently the geriatric convention at Wal-mart thought it would be wise to take a Friday drive. So here I am late, going 30 in a 70 behind Geriatric Jill and Jerry. Of course Jerry managed to about kill Jill when he decided to turn suddenly while going 30. All I saw was Jill grabbing the Oh Shit handle. I did chuckle at that.

I finally made it to daycare to pick up Goober. Where I managed to date the check July and sign my name as Lena Nelson. Finally to add insult to injury, I asked for Matte Paint and I got Semi-gloss. Which meant I had to travel to Butte again today......but that is another story.

Jeremy at work

2009-04-23T11:48:00.000-07:00

Jeremy has been working a lot of overtime this week. They have had perfect weather for prescribed burning and they are taking advantage of it! Jeremy came home last night with a newspaper and this was featured on the front page. So I GUESS all those comments I make about how him and his coworkers do nothing all day long can be argued now that there is visual proof of him actually doing something productive.

The Terrible Twos

2009-04-22T15:52:00.000-07:00

I do believe I am now experiencing the TERRIBLE TWOS, only it is in a way that only Goober could decide to do it. As you all know what had the backpack incident last week. Well this time it was the hat/sunglasses issue. It all started yesterday. It was 78 degrees out and sunny. So we put our sunglasses on and a hat to play outside. When it was finally time to go to bed. I got Goober into his PJ's and said for him to take his hat off. NO! This in sued for about 10 minutes until I gave up. He fell asleep instantly.

An our later I tiptoed into his room to remove the glasses and hat. As soon as I touched them he woke up screaming. Not a polite cry, no the type that makes the neighbors call the police because yo are beating your child cry. Back his hat and glasses went on. He woke up 3 times during the night and wanted me to come in and fix his glasses or hat.

At breakfast, well let me just say the hat came off, but the glasses stayed.

Man he is stubborn. I sure don't know where he gets that from? =)

Spring Fever....Goober Style

2009-04-20T12:01:00.000-07:00

Adam has spring fever, like the rest of us. He wants to go outside and run and play, unfortunately the weather has not been too cooperative. Today we managed to walk back from dropping the car off to get repairs. That is a 4 block stroll, that took about 45 minutes to accomplish. We then walked to the post office. Apparently this wasn't enough for him! He insisted that I put his backpack on...then a fit ensued at the door until I mentioned nap time. Then he told me, "NO NAP!" I told him yes. "ELMO! ELMO!" I put 2 and 2 together. So down he went with the back pack. The kid never stops amazing me with his stubbornness!

Here he is trying to escape out the door...

Here he is being tucked in, notice the cheese grin. Gotta love that stage!

Here is the final result.....

After the nap what else was there to do, but eat a snack, with the backpack on. DUH!

Klippel-Trenaunay Syndrome

2009-04-16T17:27:00.000-07:00

I often forget the people aren't aware of the exact condition that Adam has, so as part of this blog I am going to give a synopsis of what Adam has. If you have any questions about KT syndrome don't be afraid to ask. I am always willing to help educate people on my little boy.

In general KT is best defined as the following:

The K-T syndrome is a rare congenital malformation that may include the following:
Port-wine stain or "birthmark" (cutaneous capillary malformations)
Soft tissue and bony hypertrophy (excessive growth of the soft tissue and /or bones)
Venous malformations & lymphatic abnormalities Complications may include bleeding, cellulitis, venous thrombosis, or pulmonary embolism. Associated abnormalities in other systems, such as gigantism of toes, hand and feet anomalies, lymphedema, or involvement of the abdominal and pelvic organs may also occur.
K-T usually is limited to one limb, but may occur in multiple limbs and/or head or trunk area. Internal organs may be involved. Each case of K-T is unique and may exhibit the above characteristics to differing degrees.

Now within the world of KT Adam is slightly different. He is affected in all of his limbs except for his left arm. His port wine stain is over 3/4 of his torso and apparently the syndrome has affected the development of his teeth. We are not sure of his internal organs, we like to believe they are fine, but we won't know until he is about age 4 when he can have an MRI performed. We go to the University of MN twice a year to meet with specialists. He has to wear special orthopedic shoes, and sock are a challenge to find. We are blessed that The Syndrome has not seemed to affect him cognitively. The severity of his case is classified as about average, with the potential to worsen if not managed.

So, this has been my full time job over the last 2 years of my life. How do I manage? A strong faith, a good family, and an the advice of Aunt Karla who told me, "You are his only advocate"

Teeth

2009-04-15T17:12:00.000-07:00

We went to the dentist last week to have our biannual visit. Everyone was fine, but it was noted that Goober was missing a set of molars. The dentist thought nothing of it, but it got me thinking. So I called Adam's grandparents to find out if it ran in the family and no one recalled it existing.

I went to one of the KT boards that I am part of due to Adam's condition and posed a question about teeth, asking if anyone else is missing teeth or has problems. Amazingly I got posts from numerous people telling stories of thier children having abnormal teeth issues.

How can a condition that is classified as being vascular, lymphnatic, and bone enlargement affect teeth? It is a mystery to me. I am just glad to know that I will need to watch Adam's teeth closely as he is growing up.

Lunch with Goober

2009-04-15T13:28:00.000-07:00

Today Adam and I were eating lunch and chatting away the best that a 31 year old and a 2 year old can, when this dialogue came up. Now mind you Adam for some reason has started calling his daddy Jeremy...

Adam: Where's Jeremy?

Me: He's at work.

Adam: Oh really!

Just to add to this every word was completely formed. I felt like I was talking to an adult...This kids vocabulary never stops amazing me.

Our House....the kitchen

2009-04-15T10:40:00.000-07:00

As most of you know Jeremy and I purchased a house in Whitehall about 2 months ago. I have been slooooooooowly putting the house together. yesterday, in a brief moment of time, my kitchen was clean enough to take some pics. This one of our "projects" for the future, but for now it will do.

Welcome....

2009-04-14T12:25:00.000-07:00

After a few years of requests and a few threats I have finally decided to start blogging about the adventures of myself and family as we move and grow. I hope you will enjoy the stories and lessons. I look forward to letting everyone into our little life in Montana.