Up!

My kids were insistent that we not see A Christmas Carol until Papa was with us… and of course we agreed, since that is one of Papa’s favorite Christmas stories. Instead, we were talked into seeing a movie that will be on video in just a few days BUT since it’s always more fun to see a movie at the theater, we went to the dollar theater to see Up.

I cannot even begin to tell what a profound impact that movie had on Damian and I. Watching the scenes of the movie were like watching moments from my mom and dad’s life. I sobbed (and sobbed) as I pictured my parents as children; talking about their goals, their dreams… so in love. Of course it was only a cartoon: there were thousands of balloons, carrying Carl and Ellie’s home to South America, there were talking dogs, wild birds and an annoying little scout-boy… but each new scene seemed to parallel my parents emotions. Poor Carl was so devoted to his sweet, sweet Ellie… he spoke to her like she was right there with him, even after she was gone. He was lost with without her- Carl wanted, so badly, to carry out Ellie’s dreams and he sure did try.

In the end, Carl learned that Ellie had been happy and content all along when he came across a message from Ellie, telling him to begin new adventures of his own. The lonely, lost old man found a new beginning, his own adventures and joy… a happy ending.

I hope that someday my dad can see how immensely happy my mom was. She lived a wonderful, good life and I know that she would hope and wish that my dad would be able to find happiness, joy and new adventures once again.

Freaky ghouls and monsters too!

October 31 is always one of our favorite days of the year! Besides it being Halloween, it's also Chris' birthday! This year he celebrated his 36th! He is such an amazing father and husband and we always try to make sure that he knows it! We are such a close family and I just feel SO blessed to have my wonderful man!

Lilly made cupcakes for her daddy! The bat pumpkin is Lilly's, Ozzy is Cody's and Damian free handed/carved Jason!

My Oh So Scary vampire and 36 year old zombie!

Damian was on a school camping trip but we couldn't have Halloween without him so here he is in pictures with the other two! (A stuffed animal in Damian's costume stood in for our missing boy!)

It's hard to do your own make-up like that but it turned out okay!

Our school ROCKS!!!

My kids LOVE their new school! They have so many new, wonderful opportunities there!

Lilliana is flourishing in first grade; learning how to read better and better each day, adding and subtracting, making new friends and attending science club and pep squad after school! She recently went on her first field trip of the year and had a blast! She went to a pumpkin patch; painted a pumpkin, went on a hay ride, fed some farm animals and had a blast playing with her friends!

She loved the sack races and it was so cute to watch!

Waiting in line, with her classmates, for the hay ride.

Damian has had a HUGE year! He's taking honors classes and ROCKIN' the 6th grade! He is totally in the right environment for him to take off and it is amazing to see him enjoying his education so much! In addition to his honors classes, he is in Math League and Science Olympiad which are just amazing programs for my smarty pants! He is also enjoying chess club and Nerf club! He went to his very first middle school dance recently and really had a great time! He said that they danced and danced and man was he tired when he came home! The next day he left for a camping trip with his Science Olympiad team! He missed out on Halloween with us (we really missed him bunches) but he didn't miss, missing us and had the time of his life!

Damian, heading out the door for his first dance!

Cody is just an amazing student! His teachers are always commenting to us on how brilliant he is! He maintains straight A's, even though he misses school do to his primary hypogammablogulinemia. He also loves school, enjoys switching classes each period and going to his after school clubs- robotics and ping pong club! He is also taking Turkish class- L.O.V.E.S his teacher and is enjoying all the opportunities that he is provided with at his new school. He was suppose to attend a Turkish Festival in Houston over the weekend but was unable to do to a respiratory infection that he has been fighting... we have promised an excellent time at next years event!

A different perspective...

Sometimes you just need to look at things from a different point of view...

I've been to the Alamo many times over the past five years and while I have always found it to be a bit of a dissapointment (Not the history of it- the actual building- in my mind, I really thought it would be more....grand? than it is) this time I looked at things from a different point of view.

It's absolutely beautiful.

The cracks tell a story, a history of faith, religion, cultural diversity, violence- a final stand.

Strength. Courage.

Beauty.

Sacrifices.

Hallowed Ground.

A reminder to never give in, to fight for what you believe in.

It's great to see things from a different perspective.

King Williams District

My good friend, Cheryl, and I took advantage of a free day to get out of our houses... It didn't feel much like fall much fall but we sure did enjoy being out!

The Pioneer Flour Company, Gunther House and the San Antonio River

We headed to an area of town known as the King Williams District. The area, near downtown San Antonio, was settled by wealthy German merchants in the late 1800's. It's such a beautiful area with old, historic homes that have been well maintained! As you walk the street of the King Williams District, you feel as if you've stepped back in time. The King William's District was the first designated Historic District in Texas.

Howl-O-Scream!

Tired of being stuck in the house... I felt that everyone was finally well enough to go to Sea World's Howl-O-Scream last night! We had a BLAST!

If you have never been, it is my favorite time to go to Sea World and HIGHLY recommend visiting in the fall! The weather was perfect, the atmosphere is extra fun and energetic and the decorations ROCK!

Aren't the fishkins SO cute?!?

Cody with a werewolf.

What a brave dude! He rode the Steele Eel and had SO much fun!

Climbing through a tunnel on their playscape.

Had a great time at the Shamu Show! We are HUGE Shamu fans!

Daddy and Lilly (aka the fraidy-cat) looking at a werewolf.

Handsome Damian, in line for the spooky stuff!

Isn't he the cutest!?!

Creepy!

A break from the fever...

Lilly had a break in her fever today! I thought maybe she was breaking free from this nasty flu; unfortunately it appears that it was just a temporary thing... her darn fever is back and she's coughing up a storm again this evening!

Lilly had to show off her beautiful top that Aunt Katelyn made for her! She is sooo proud of it and took advantage of her little fever break by running around the front yard for a minutes!

Swine Flu and Mushrooms too!

Hacking and Coughing and Fevers OH MY!

We’ve had the flu… totally nasty but we’re getting through it! Lilly and I are home alone- recovering from the flu while the boys are getting all spooked out at Sea World's Howl-O-Scream! I hope that they have a G-R-E-A-T time! In the meantime, the girls are watching chick (or girl) flicks!

While I have been cooped up in the house, it’s been raining… and with the rain comes fungus! I was happy to see a patch of mushrooms growing in my backyard! They are sooo pretty and I had to get out of the house long enough to use my camera!

Walking on the beach with Nana.

Yesterday morning Chris went upstairs to wake Damian up. When he did, Damian woke up crying and screaming at Chris… “No, I am not supposed to be here, I was dreaming and Nana was with me. Why did you wake me up?”

He was devastated. He wanted to back to that brief moment of time when he and his Nana were together again.

After he explained his dream to me, he asked me if I thought there was any way that she really visited him last night… I told him that I absolutely thought his Nana was with him, there was no other explanation for it.

Damian explained that he and Nana were on the beach; surrounded by tall trees- a lush forest, huge rocks on which the waves crashed, the sun was setting and the sky looked like one of her water color paintings, it was private- no one else around. (To me, Damian is describing one of mom’s favorite places, Indian Beach on the Oregon coast-a place he has never been.)

He said that she was so beautiful. She was wearing a lovely pink blouse with little red flowers on it. She had her arm again and both of her wrists had many beautiful bracelets on them, including a yellow LiveStrong bracelet.

As they walked along the beach, holding hands, the two of them had a wonderful conversation (most of which I am choosing not share). She told him that she is so proud of him; she told him that no matter what happens in his life, he needs to remember that he always has his family to count on and she told him to make sure that he always finds happiness in life.

“Mom, do you think she’ll visit me again?”

“I am sure she will honey, but please don’t expect it to be tonight or tomorrow or next month, maybe even not this year. It took Nana a long time to come to you in a dream, it may be a while before she can do it again.”

Of all the members of our family, it is so fitting that Nana chose to visit Damian. She and him were best buddies and shared the most precious of relationships. On the morning that she passed, I was not going to wake the kids- my dad, brother, Chris and I were surrounding her, touching her and softly speaking to her, encouraging her while her time in her present life came to an end. As the sun began to rise, I turned to the doorway of her room to find my sweetest little boy standing there. Damian, without an ounce of fear, came to the bed and held his Nana’s only hand as she left this world for the next.

Of course they would share that special bond beyond this world.

I have wished every single day since her passing that I would have a dream like that… I never have. I must admit that I am jealous and sad and happy all at the same time but most of all, I am so grateful that my mom was able to let us know that she is okay, that she is happy and that she is always here with us and I am honored that she came to visit her special grandson in his dreams.

injured kids, sick kids... healing kids!

It has been a crazy few weeks around here! Thank goodness we are use to the craziness and are handling each bump in the road!

Cody had a set-back over the weekend with extreme dizziness, nausea, vomiting and a terrible headache. It was a little scary! We talked with the doctor and did a combination of things- we took him off his pain medication (poor baby) and had him lie flat on his back for about 36 hours. We are not sure if it was a reaction to the pain medication or leakage of spinal fluid from his epidural site but something helped! Yesterday he had such a great day that he was walking up and down the stairs, bending his knee to a 90 degree angle… he even played Wii Sports! I am so proud of him- he is doing amazing!

Lilliana has a crazy, freaky thing going on right now. She started with a bad earache on Sunday and it has only gotten worse each day. She saw her pediatrician yesterday… her ear drum looked okay, not great-but not terrible- her ear canal was red but none of that concerned her. What really bothered her was that she could not touch Lilly’s ear without her crying in pain. It turns out that she thinks that Lilly has a bone infection in a bone called the mastoid, the little bone directly behind your ear. The infection is called acute mastoiditis and it is a serious infection with very serious complications (including necrosis of the bone, deafness and meningitis). Most of the time, this infection requires a hospital stay with IV antibiotics. We are trying a course of high dose antibiotics and are hoping that it will knock down the infection so we can stay away from the hospital. We’re keeping our fingers crossed for her! Thankfully she also seems to be doing a little better this afternoon!

Thank goodness Damian is doing AWESOME! He is healthy and happy and enjoying school! I am going to share a wonderful story about him in my next entry!

Top Ten...

Seriously, a lot of great things happen at hospitals! They help bring life into the world; they heal the injured and cure the sick…. I have so much respect for hospitals and their staff (most of the time)… it’s just nights like THIS, that I am reminded why I don’t like to be in them.

Top Ten (or 11) Reasons that I Dislike Hospitals….

#10- Many of the people in the waiting rooms are rude, selfish and disrespectful.

#9- Hospitals are dirty, nasty breading grounds for super bugs… I can close my eyes and picture staph germs and H1N1 crawling all over Cody and I….. ICK!

#8- They are grossly over crowded and understaffed. It’s awful to see the nurses running like crazy and forgetting to bring medications to patients because they are spread so thin.

#7- They bring TACOS to a nine year old who just got out of surgery! What the heck is the deal there? That is just wrong in so many ways. In case you are wondering… he didn’t even look at his tray.

#6- Being treated like I know nothing about my child and his medical issues when I have been the primary care giver of a medically fragile child for nine years!

#5- Did I mention that the food sucks?

#4- Taking vitals on a little boy who JUST fell asleep…not cool. Seriously, when you have someone who is in pain and is struggling to settle down, it sucks to see them FINALLY drift off to sleep only to be woken up...being poked and prodded.

#3- The bathrooms are just plain nasty….being the germ freak that I am, I nearly fainted onto the nasty floor when I went to wash my hands and there was NO soap! (thank goodness there is hand sanitizer everywhere... plus I brought two of my own bottles!)

#2- The “On a scale from 1-10, how much pain are you in?” OR “Can you point to the ‘face’ describes your pain level?" Seriously, can you not LOOK at my kids face and see what expression he is making corresponds best with the damn pictures???

and the #1 reason I dislike hospitals (at least for the time being!)....

Finally falling asleep at 1:00 in the morning, only to have the nurses wake you up at 1:15 to tell you that they have a new patient coming in and WE have to switch rooms!

AND JUST WHEN I THOUGHT IT HAD GOTTEN BAD ENOUGH....

at 2:55 Cody's epidural pump starts beeping (empty container). They are all freakin out because they cannot figure out how to get it to stop beeping. It is not empty but whoever programmed it put 100 cc into the program instead of what it needed to be programmed for (250). These nurses are standing around for 20 minutes, trying to figure it out and I am getting pissed... because not only are Cody and I wide awake but now the poor little boy who we moved in with in the middle of the night is now awake, as are both of his parents. (seriously, they couldn't even get the beeping to stop)

So finally I get mad and say... "This is the same IV pump that Cody uses for IVIG. I am tired of listening to it beep and I am tired of waiting for you to come up with an answer.... we are going to trick it into thinking that we switched containers. I pressed "stop" then "new container" then "start" and it was good as new in 10 seconds. GRRRRRRRRRRR! They were mad at me because I messed up their numbers but I seriously didn't give a hoot at that point!

It's 5:30... I am so tired. I can hardly wait to get out of here and back to the house so Cody and I can take a nap in my nice, comfy bed.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Not my best week...

Cody will be having surgery on Thursday. He has medial plica syndrome and RSD in his left knee. The injury is total déjà vu as it was almost exactly a year ago that the exact same injury occurred to Cody’s right knee.

Because children his age rarely have issues like this (so rare in young children that Cody’s was the youngest patient with medial plica syndrome that his pediatric orthopedic surgeon had ever seen) it took them three months to diagnose last year. It was the worst three months that I have ever experienced as a parent and I was not going to stop until I found and answer. SO, after three months of tests, steriod injections, searching and fighting and emailing every orthopedic surgeon in the country (maybe not every ortho…. But you would be surprised by the amount of people I reached out to) our very kind pediatric orthopedic surgeon agreed to do surgery on Cody’s knee; to remove the plica, clean out the scar tissue and have a nerve block and epidural left in over night to calm the nerves. After several weeks of recovery, Cody spent the past 8 months feeling great!

Fast forward to last Monday. Cody was simply walking across his bedroom floor when he collapsed in pain… Chris and I immediately knew what had happened. It was heartbreaking and completely devastating to know that he was in the same pain all over again. He can barely walk due to the intensity and it hurts tremendously, no matter what he is doing (whether he is lying on the couch or walking down the hallway at school).

Thankfully, saw his doctor a week ago and he agreed that the best option was to bypass the conservative treatment options and head straight to the OR. Cody will be having surgery on Thursday. While we do not want Cody to undergo another surgery (his 7th in nine years), we feel that it is the only option. He will be spending some time in the hospital so please pray that he does not pick up any infections while he is there. He doesn’t have IVIG until NEXT Friday so we still have about two weeks to go.

So, I am stressed out enough about the upcoming surgery… it’s a lot to worry about, especially with his immune deficiency.

On top of that…

We got terrible, heart wrenching news on Sunday afternoon. We have been asked not to say much until our family knows more details, but we lost a nephew on Saturday. We have had a difficult time since Chris received the phone call. Tragic is the only way to describe it.

It seems like Chris and I have been faced with too much death over the past few years. It began with my grandpa, then my beloved mother, my father-in-law, and two nephews.

I didn’t want to get out of bed this morning. Today is my mom’s birthday. Today should have been her 57th birthday. I wish that I was antique shopping with her… I wish I was taking her to the mall or out to lunch… I wish I could wrap arms around her and tell her how much I love her, how much she means to me. I miss her more than any words could ever begin to express.

I deserve a day, once in a while… when I just want to stay in bed- and feel sorry for myself.

Next week will be better.

One crazy week!

Last Sunday:
-Clipped Paxton's nails and cut his quick... which led to to a pretty nasty bleed, which led to a Sunday visit to the vet & a HUGE bandage.
-Chris left for a class in Houston.
-Cody and Damian were housing a little too much, which led to Cody receiving a concussion.
Monday:
-Had Cody home, monitoring his concussion.
Tuesday:
-Cody developed another bad sinus infection, which led to a high fever and more antibiotics.
Wednesday:
-Cody stayed home, allowing time for the antibiotics to kick in and his fever to break.
Thursday:
-Cody was able to go back to school.. but Damian had to stay home because he developed an upper respiratory infection and terrible fever. In the evening, I started Cody's IV... about 30 minutes later- he stepped on his IV line, snapping it in two and pulling hard on his port so we had to remove the line for the night.
Friday:
-Damian stayed home again, with his high fever and terrible cough. Cody and I spent the day at Dr. P's, getting IVIG. After a long day at the hospital, Cody and I picked Lilly up from school and I came home to help take care of Damian... later that night we left for the airport (with a sick kid, a tired kid and a kid with an IV) to pick Chris up. Waited and waited and waited for a very late airplane with three kids who missed their daddy all week.

Thank goodness last week is over! I don't miss it, that's for sure! Thank goodness for my dad! He is such a treasure, I may not have been able to maintain my sanity if it were not for him! Of course, we made it through the week just fine and were happy to have Chris home. We spent the weekend relaxing, which was a nice change of pace. I helped create an online portfolio for Chris... have never done anything like that before! There are lots of improvements to be made to it still but I think it turned out great for never having done anything like that before.

Now it's onto this week, which I am certain will be better than the last one!

First day of SCHOOL!

Well...

I am officially the mother of a 6th grader, a 4th grader and a 1st grader... and it makes me want to cry! I cannot believe it. I remember, like it was yesterday, bringing my baby (Lilliana) home from the hospital the night BEFORE I took took Damian to his first day of kindergarten! All three of the kids were SO tiny and I balled my eyes out. Now, they look SO grown up!!! I wish that time didn't pass by so quickly... but I am SO proud of them for being such responsible, kind, good, SMART kids!

Here are a few pictures from their first morning!

Navy Retirement

We attended the retirement ceremony of our friend & neighbor, Jason, this past Friday. He has served in the Navy for 21 years! I admire him and his family so much for all of the sacrifices that they have made for the safety and well-being of our country.

A Candy Party!

Lilliana Grace Kofoed is SIX years old today!!!

She is a beautiful, kind, sweet, funny little girl who graces me with her laughter and smiles every single day.

She celebrated with friends yesterday by having a CANDY PARTY!!! It was soooo much fun!

My very good friend, Michele, created this beautiful cake for Lilly.

It was chocolate cake with cookies and cream filling and her signature butter cream frosting... SO delicious and totally cute, sticking to the candy theme!

The cake table!

MMM... so yummy & super cute!

All the goodies!

The candy centerpiece!

We made fruit loop "candy" necklaces, candy bar cars... played Candyland and colored candy pictures!

The big girl and her cake!

YUMMY candy!

Lilly's friends, helping her celebrate!

Happy Birthday Lilly!

Presents

Lilly and Alexis, crafting!

He was a broken hearted little boy...

Cody rarely cries or expresses his emotions (more than normal little boy stuff)… and when he does show that emotion, it absolutely, 100% breaks your heart.

Chris and I were sitting on the sofa this evening, he was working and I was watching HGTV (my favorite channel) when Cody came down the stairs, sobbing. He kept trying to tell me what was wrong but he was crying too hard for me to understand him. Through his sobs, I finally heard the words… “I miss Nana.”

I hate seeing the kids upset but it literally tears me apart when they are sad about Nana… and it is particularly difficult when Cody shows his emotions, because it rarely happens. I tried not to cry myself while I held my little boy. Nothing I could say or do helped, so Daddy tried- and that didn’t work either. What do you say? What do you do? After a long, good cry… I suggested that he get dressed and run out for midnight snack with Daddy… he suggested that it sounded like a great idea, but only if Daddy went by himself. SO, at 11:45, Chris ran to Sonic (while Cody and I snuggled on the couch), he brought home milkshakes and tater tots and after a good bedtime snack and some cuddle time with Paxton, he was finally able to go to sleep.

My kids are truly amazing human beings. They have learned so much about family, love, life and unfortunately death. They have learned to be thoughtful, caring, kind empathetic individuals who put other people’s needs ahead of there own. They are who they are because of what they have experienced in their short lives and a lot of the values that they possess were instilled in them by their Nana. Cody, who goes through many struggles of his own, relates to Nana in way that none of the rest of us can. (It is heart wrenching to know that, by the way) I think that is why Cody’s hurt for Nana seems so intense and truly painful when he shows it. I wish I could take that away for him and his brother and sister too. It’s never gotten easier, I wonder if it ever will…

IN A RUT...

Wow… it has been forever since I updated the blog! For some reason, I have been in a rut lately.

Part of it is the Texas record heat wave and the bone dry drought… far too hot to play outside, seems like we wasted the summer waiting for everything to cool off a bit- it NEVER did! We are homesick for Colorado, the mountains, Nana’s Meadow, fishing, hiking, camping…our family and four seasons (not the resorts- you know… winter, spring, summer and fall… not just hot and less hot)!!! We are hoping and praying for some rain and cooler temperatures to sooth our souls SOON!

The other thing that has me a bit down lately… Cody. Well, not so much Cody as the medical issues that he deals with. Unfortunately, we have some issues with the nursing staff at treatment (I posted about them a while back… and they continue to happen). Cody’s IgG levels are not maintaining adequate levels for the four weeks between treatments so are awaiting a plot of his IgG levels over the past several months to a year to see if he will have to go to treatment every three weeks instead of every four. Nothing major but knowing that we may need to begin doing treatments more often is a total drag… of course we’ll do whatever we can for him, we just wish that things could get easier and not more complicated.

We have managed to get in some fun times this summer… Sea World, putt- putt golf, a trip to Colorado and swimming in the pool. Now we’re ready for new experiences, good times and adventures this fall!

It’s the last week of summer vacation, hard to believe! I love having the kids home with me but they are excited for a new school year to begin! The supplies are all labeled and ready to go. Cody and Lilly have orientation on Wednesday and Damian’s is on Thursday. We have a military retirement to attend on Friday and then Lilly’s party on Saturday, her 6th birthday on Sunday and school Monday….phew- it’s going to be a packed week!

IDF

“When you hear hoof beats, think zebras, not horses.”

In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras.” Most physicians are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Primary immunodeficiency patients are the zebras of the medical world. So IDF says “THINK ZEBRA!” Let’s teach the world about “zebras” while raising funds to help promote awareness of primary immunodeficiency diseases.

Your immune system’s purpose is to keep you healthy; to protect your body from bacteria and viruses. If your body lacks components of that immune system, you are more likely to develop infections; which are often more severe, longer lasting, reoccurring and even with the use of strong antibiotics, it is often difficult to clear the infections. In addition, building antibody response to immunizations is often difficult, leaving PID patients very susceptible to the severe infections the immunizations ward off. There are many forms of PID (more than 150, in fact)- ranging from minor to severe.
Many patients who experience more severe forms of PID require immune globulin infusions on a regular basis. Immune globulin, is a donated product- a solution containing antibodies to help fight infections.
Cody, my amazing and courageous nine year old, has been receiving IV immune globulin for two and a half years now as a result of his PID, primary hypogammaglobulinemia. Even though Cody receives large doses of IV immune globulin every four weeks, via a port-a-cath in his chest, he still battles with recurrent, deep seated sinus infections. From the outside, no one would ever be able to tell that something was wrong with Cody (unless you saw the small, button sized deformity under his skin, on his chest-where his port-a-cath lies). He is smart, funny, athletic, adventurous and amazingly sweet… hard to imagine that he struggles each day to maintain his health and safety---that something missing from his immune system… genetically missing from his conception- could, at any moment, allow a life-threatening infection to slip past its defenses.

People with primary immunodeficiency (PI) have one thing in common – susceptibility to infection. If you have two or more of the following warning signs, talk to a physician about getting tested for primary immune deficiency.
• Eight or more new ear infections within one year
• Two or more serious sinus infections within one year
• Two or more months of antibiotics with little effect
• Two or more pneumonias within one year
• Failure of an infant to gain weight or grow normally
• Recurrent, deep skin or organ abscesses
• Persistent thrush in mouth or elsewhere on skin, after age one
• Need for intravenous antibiotics to clear infections
• Two or more deep-seated infections such as meningitis, osteomyelitis, cellulitis or sepsis
• A family history of primary immunodeficiency
(www.immunedisease.com)

Most often, PID is diagnosed in children but in thousands of cases- PID is misdiagnosed or undiagnosed until later in life. Just recently, a family friend (adult), was diagnosed with the same immune deficiency that Cody has. Help Cody, our family friend and the new friends that I am meeting everyday who suffer from these immune deficiencies.

The Immune Deficiency Foundation (IDF) is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. That is why I have decided to lend my full support to IDF by helping to raise money through their THINK ZEBRA! Campaign. This effort is designed to raise funds for IDF to support patient and physician education, and promote awareness of primary immunodeficiency diseases. Please visit http://www.primaryimmune.org/ for more information about IDF. Your tax-deductible contribution, no matter how big or small, will help a great deal. The Immune Deficiency Foundation is a non-profit 501(c)(3) organization, and contributions are tax-deductible to the maximum extent allowed by IRS regulations. You can make a gift online at http://www.primaryimmune.org/zebra. Be sure to check off the “THINK ZEBRA!” button and put Cody Kofoed under “Referred by” so IDF knows I sent you to the Website. Thank you for supporting THINK ZEBRA! to make a difference! If you have any questions, please contact me.

Little Baby Feet

My sister-in-law is addicted to this photography contest blog! She is so cute, challenging herself to get the perfect picture every week! I have never tried it out before...but this week, I thought that I would finally give it a shot! This photograph was taken for my good friend, Michele, of her new baby, Molly!

Making cards like Nana

My parents have always been amazing photographers.
Where ever they would go, the camera would go too. I don't see my dad with his camera as much these days, I hope that will change!
My mom decided to put their beautiful pictures to good use and several years before her passing, she began making cards for her friends and family. To this day, many of those friends and family members still talk about their love of my mother's cards (and of course so many other wonderful memories of my mom).
Although I will never be the photographer that my own parents are, I do really enjoy taking pictures.
Last Christmas, I handmade my Christmas cards and placed photographs of the kids on them but yesterday, for the first time, I made some cards to give away to friends.
I was really proud of them.
I wished that my mom and I could have been sitting in my living room together, making cards and laughing at one another. That would have been so nice.

Happy Birthday Cody!

Cody celebrated his 9th birthday on Saturday!
He truly amazes me every single day!
He is strong, happy, adventurous, fearless, courageous and kind.
He never, ever complains about what he has to go through...
never gets upset about being sick or needing IV's, IVIG, nasty antibiotics....
He just simply rolls with the punches every single day.
He loves to rock climb, skateboard, ride his bike, hike and climb tress.
He is smart and mature beyond his years.
He truly amazes me every single day!
Happy birthday big guy! I love you so much!

Cody John Kofoed, nine years old

Opening presents at my aunt's house.

Family & swimming!

Today was our last day in Denver!

I am so sad to leave this time. I have truly realized how much I miss the mountains, the cool evening breeze, the snow and my family.

We went and saw Harry Potter this morning.... it totally ROCKED! The kids, Uncle Gavin, Aunt Katelyn, Aunt Laurie, Uncle Joe and Chris & I all went together! It was so nice to be out with the family! Papa stayed with Brooklyn and Paxton and they went on a long walk!

We were also able to visit with my Aunt Connie (who just had major surgery) and her family today. It was so nice to visit with she and my uncle, my cousins and their children. The kids all swam and had a blast!

Another good evening with Aunt Laurie and Uncle Joe. Chris and I drove around for a bit and daydreamed about a life in Colorado.... maybe someday.

I feel so fortunate to have such an amazing family & I hope that they all know how much I miss them!

A visit to Nana's Meadow

As we drove up the mountain road to Long Lake, Lilly tried to hold back her tears. "Mommy, do you think we will see that stuff we sprinkled in Nana's Meadow?" Without knowing how to answer, I was grateful that my Aunt Laurie was there! She turned to Lilly & said, "No honey, the ashes that we sprinkled turned into flowers."

Nana's meadow was just as beautiful and peaceful as I had remembered. I cannot believe that this was my third trip to her meadow, my third journey to the meadow where we spread my moms ashes. I miss her so.

"To the world she was one but to me, she was the world."

Greg Bird

My dad.

Me, looking out onto Long Lake

Long Lake

Nana's Meadow

Nana's grandkids.

Rocky Mountain National Park!

Brrrrrr!
We made it to the observation area at the top of Trail Ridge Road in Rocky Mountain National Park today! The wind was whipping and the air was COLD! We low-landers huffed and puffed and made our way to the top! 12,005 feet above sea level is a long way from San Antonio!
If you have never been to the Rocky Mountains, you are missing out! Words cannot adequately describe the vast beauty and grandeur that you encounter when visiting these mountains!
Raging rivers of fresh snow melt, glacier fed lakes, snow capped peaks, endangered species, wild flowers, crisp mountain air and the smell of pine trees…
We saw lots of wildlife! From cute little ground squirrels and marmots to deer and elk. We were even fortunate enough to see a little pika. Pika are becoming endangered as a result of global warming. They only live at the highest elevations in the park.
I had a great time with my dad, who pointed out all the different species of plant life in the tundra. I love listening to my dad talk about plants- he is so knowledgeable!
I have to say that, by far, this was the BEST vacation day I have had in years! Loved every moment of it!

Chechnya Falls

Flowers in the tundra

Papa and the kids at the top on Trail Ridge Road!

Hanging Lake

A little Marmot

A cute little Pika.

Tundra flowers

Seriously, the wind was blowing so hard that the kids couldn't stand up straight and it was FREEZING!

The boys and I kicked our weenie little Texan butts and made it to the top!

12,005 feet above sea level baby!

Okay, Chris and Lilly totally put the water fall's size into perspective!

Sunset at my aunt's house!

Family and the Denver Zoo!

Today was a much more relaxed day.
We have been visiting with my Aunt Laurie and Uncle Joe and enjoying Denver! I don't think we realized how much we miss the mountains until we had been gone for a while.
We had a lot of fun at the Denver Zoo today! It was pretty hot out today though and Cody is NOT feeling very well so it didn't make for the greatest combination. Poor kid has really struggled since treatment on Friday. He has been asleep since about 5:00 this evening so I am hoping that a good night's sleep will help him feel better tomorrow.
We had a great dinner this evening and now Chris and I are sitting out in the back yard enjoying the sunset!
Here are a few photos from our day at the zoo!

The kids, playing on a drum at the zoo.

Damian, Cody, Lilliana, Brooklyn & their friend!

Grizzly bear. Chilling on tree!

More fishin' fun & car troubles too!

We had such a WONDERFUL morning yesterday! We woke the kids at 6:15 and were out fishin' by 6:40. It was so lovely out- quiet, peaceful... the mountain air so fresh and crisp!
Paxton (the warm weather, Texan pug) shivered while we fished away! Had a few bites on the lake but no one had any luck so we headed down to the river to let the kids fish there. The river was SO much fun! Tons of fish biting and everyone was catching good size fish! I had a blast watching my dad, my husband, my brother and my kids all fishing. The guys are amazing fishermen and it is such a treat to be able to watch them fish together!
We still had a good drive ahead of us to get to Denver- SO at about 10:00 we called it a day and went back to the hotel to pack up the car and head out. To make a very LONG story short... Gavin and Katelyn had gobs of cars troubles and ended up braking down in the middle of no where. Thank goodness Chris was there and was able to help- I don't think that people realize how truly wonderful this man is... can can seriously do anything!!! We drove and hour to the parts store, an hour back... spent an hour working on the car and still had over three hours of driving time left. It was just FABULOUS! We finally arrived at Aunt Laurie's house around 8:30 last night...thankful that everyone made it there!
I have to say that I have the most amazing husband and kids! Cody hasn't feeling well at all since his treatment and never complained the entire time (even though he ad stomach cramps, was nauseous, had a headache, fever and dizziness. He is an amazing little and I am so proud of him. Damian and Lilly have also been awesome! We have driven over 1400 miles so far and they have been happy the entire journey! And Chris just totally rocks!

Cody, fishing with his Papa!

Chris with a rainbow trout!

Damian, reeling in a trout.

The BIG trout that Papa and Lilly caught!

Check it out!

Come on Lilly, you can do it!

Cody and his trout!

Look closely at my dad's pole, you can tell this was a BIG catch!

FISHIN'...

We made it to Pagosa Springs, Colorado today. I love it here- it's one of my favorite places to visit in Colorado. It's such a fun little town and is absolutely beautiful!
If they had a space science facility here, we'd never leave!
The kids were so excited to get here and start fishing!!! They had an awesome time and looked so cute with their fishing vests on! Damian and Lilly both caught fish... hopefully Cody will catch one tomorrow morning!
I SO enjoyed watching my three kids, all fishing on their own (with the exception of mommy replacing worms on "empty" hooks and untangling the lines occasionally). They seemed so grown up and very independent!
While the kids were fishing after dinner, we all enjoyed watching two beavers working on their lodge. They were very busy, swimming back and forth, back and forth!
The kids (and Chris) crashed quickly tonight! They are snoozing away, dreaming sweet dreams about their wonderful day.

Cody, fishing in Pagosa Springs!

Lilliana, just the most precious fishergirl I have ever seen!

My handsome Damian, patiently waiting for a bite!

Totally, 100% oober cute girl!

I absolutely LOVE this picture of Damian! The reflection is really awesome!

Damian and Papa, waiting for the fish to bite!

The fish that Lilly caught ALL by herself!

Chris and Cody... fishing and watching the beavers!

Chris with a fish that he caught!

Gavin with one of his big catches!

Rocky Mountain Columbine

I absolutely LOVE wildflowers and the flowers of Colorado are the prettiest that I have ever seen! Luckily, we came at a wonderful time of the summer, during a rainy spell and have been able to see some BEAUTIFUL wildflowers! My favorite of my favorites are the Rocky Mountain Columbines, the state flower of Colorado.

Happy 4th!

Loving on each other!
Wishing their friends and family across the country
a WONDERFUL 4th!

My really poor attempt at getting some fireworks pictures! It was TOO windy!

HAPPY INDEPENDENCE DAY!
It was FAR too hot to play outside today! No slip-n-slide or running through the sprinkler because of the water restrictions (we are in a horrible drought in South Texas), the pool wasn't refreshing, it felt more like bath water... there is a burn ban and a firework ban so we couldn't even have sparklers and we didn't feel like standing out in the heat to grill out!
Needless to say, our Fourth of July wasn't exactly what we traditionally do!
Instead... we had a low key kind of day! We went to Bass Pro Shop to for a while! We all love to hang out there! We looked at fishing equipment, played in the camping section for a while, looked at canoes & kayaks and watched the fish swim the big tanks! The kids had a great time and even made birdhouses while they were there!
The rest of the day was spent enjoying the AC from the comfort of home! This evening we watched the Sea World fireworks display, the kids had a blast even though it was HOT and very WINDY. I tried to take a few pictures but even with the camera on a tripod, the camera got blown around so my pictures didn't turn out well at all. OH WELL, there's always next year!
I hope that everyone had a wonderful 4th of July!

In the truest sense, freedom cannot be bestowed; it must be achieved. -Franklin D. Roosevelt

Drinking from the hose.

Background:
I HATE germs. Germs, disease, fungus... anything that can make you sick is an enemy of me! Lysol and hand sanitizer are some of my best friends! If my kids drop something on the floor, there is NO five second rule, it simply goes into the trash!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Out at Papa's house, the kids LOVE to feed the deer! They are very tame and will eat deer corn right out of your hands. They are so friendly that many of them have names: Big Guy, Sweetheart, Buddy... Well, as soon as my kids are done feeding the deer, they have to wash their hands... my #1 deer feeding rule! No problem... the kids are great at it- into the house and scrubbing their hands with soap and water!
Today, the kids were filling up the deer watering pool in Papa's backyard. Cody got the hose out, submerged it into the deer pond and allowed the water to fill up. When it was full, Papa asked Lilly to take the hose over to the bird bath and fill it up with water too!
"No problem Papa!"
Papa and I watched as Lilly walked across the yard in the heat of the Texas sun. She must have been hot and thirsty because she wrapped her sweet little clean lips around that plunged-in-deer-water hose and got herself a huge drink of hose water!
G R O S S!!!!!!!!

Happy Father's Day!

"Blessed indeed is a man who hears many gentle voices call him father."

I feel blessed today as I celebrate two wonderful men in my life!

The first of these men has been a pillar of strength, tremendous courage, truest devotion and endless love to our family. He is the most kind and truly amazing man I know. I have learned so much from him and am honored to call this man my Dad!
The kids could hardly wait to give Papa the gifts that they worked so hard on. Damian, Cody and Lilly (with the help of Chris) made beautiful bird houses for their Papa.

(Father's Day birdhouses for Papa)

(Lilliana, way up in the tree with her birdhouse)

(Cody, the monkey, up in the tree with the birdhouse he made for Pops!)

(My sweetest angels with their gifts that they made for Papa)

Happy Father's Day to the love of my life! Chris has been the most supportive, encouraging, thoughtful husband and father! He works so hard each day to provide for our family and comes home each night ready to play, help around the house, work on cars...whatever needs to be done! He is fabulous and amazing and his kids and I love him more than words can express!

These are some pictures that we took last weekend. We printed and framed some of them so that Chris can take them to work. He loves to have pictures of the kids in his office.



And of course, Happy Father's Day to all the dads... those we know and love who celebrate today with their families and those who are with us today in spirit!

Top Secret Mission!

(I LOVE this picture of Damian!)

The kids have been building extra special Father's Day gifts for their Papa over the last week. They have all put in some sweat hours and can hardly wait until Sunday so that they can give Papa their fabulous gifts!

(Cody, working away..keeping it safe with safety glasses)

(A few random pictures of their time in the garage)
More pictures to come of the Great Reveal!

And good news! After Lilly's big bike crash a few weeks ago, she's back out there and doing great!

Just a little venting.

(this slide show is photographs from my mom's meadow, 2007 & 2008)

This is a very personal entry about something that I do not like to talk about very often... it's difficult to open up about and I am hoping that by writing down my thoughts, I will get a clearer picture of what I should be doing.
Money is tight...
We live on one income and although it's a good income... things sometimes feel less than okay.
Health insurance is great, and without it I have no idea what we would do, but it's not enough. Unless you have someone who has special needs, I am not sure that one can ever completely understand. You see, the amount of money that Chris and I owe each month (what's left after insurance pays out) ranges anywhere from a NICE car payment to a HOUSE PAYMENT. I am not kidding. On a GOOD month, we owe a little over over $500.00 JUST for Cody's medical bills- do not ask what a bad month costs us, it's not pretty.
Now, throw into the mix, the medical issues that Lilly has been having with her tummy and Damian's huge mess with his arm (and us paying cash for a waterproof cast), our decision to purchase our own IV pump for Cody and a few hundred dollars that we will be paying for Paxton's multiple procedure surgery (a pug nose job, hernia repair and neutering) ... the last few months have been VERY tight for us financially.
~~~~~~~~~~~~~~~~~
I have returned to Colorado each summer since my mom's passing. The first visit, two years ago, was to release my mom's ashes. Last year I returned, once again, to the beautiful meadow at Long Lake... her meadow. A place filled with freedom, peace, life, beauty and grandeur. Wildflowers, the snow capped peaks of the Rocky Mountains, glacier fed streams and lakes, wildlife... A place where I can go and NOT feel sad about my mom. For months my dad, my brother and his family and my family, have all been planning our first trip with everyone, to my mom's meadow. I have been excited and anxious to return to the place where I am reminded that everything is the way it should be.
But now....now money extra tight with all our recent medical expences. Chris has offered to work even more overtime than he usually does, so that we can pay for our trip. My dad has offered to loan us money- but it just doesn't seem right. I am torn, wanting to go more than anything, but not wanting to feel the money crunch even more than we already are.
I know that when people look at Cody, they see a healthy, happy kid... and for the most part, that is true. He IS happy and he is mostly healthy but only because of the drastic measures we take to keep him that way. I sometimes talk about how expensive this is but I do not think that people understand just how expensive it really is for us.
I wish that I knew what the right thing to do was and I wish that everyone understood...

-Understood what it is like to lose your mom (who was also your best friend) and find out that your child has a severe and chronic illness within weeks of each other.
-Understood what it is like to have a child who's life hangs in the balance each day.
-Understood what it is like to be the primary care provider of that child, to keep them safe and healthy.
-Understood what it is like to dread getting the mail each day because you know that not one day goes by without getting a medical bill.
-Understood what it is like to not know what the right decision always is.
-Understood what it is like to try your very hardest to not let people down.

I am pretty sure we'll be able to go, and that we'll end up having a great time.... I just wish that we didn't have to worry about things.

Weekend Update!

It was a rather slow news story weekend at the home of the Kofoed's.
Saturday, the family spent much of the day evading the heat in the family home. Temperatures were over 100 degrees with heat advisories in effect. When the afternoon shade made a much anticipated appearance, the family headed out to their backyard pool.
Sunday was a day of light cleaning and more swimming. Mother Kofoed had a brilliant idea to take the family out and take a few quick photographs for Father's Day gifts; however, the family nearly turned on her when the heat got best of a certain family member (to protect the minor child's identity, she will not be named). The photo session was quickly ended and a resolution was agreed upon after the unnamed child was given a popsicle.
Cody Kofoed, the famous IVIG dude, had his IV line removed yesterday and was able to enjoy his weekend without any ill effects from his time with treatment.
The other Kofoed children had an uneventful weekend, free of illness or injury.

Someone needs to write a book...

...about the amazing man who keeps my son healthy!
Not only is he absolutely the most brilliant, knowledgeable, intuitive and positive doctor (who happens to have the BEST bedside manner); he is also an amazing man who has led an extraordinary life.
During our very first appointment with Cody's doctor, he drew his own blood as the control sample; not only as a control sample, but also to show Cody that he wasn't afraid to do the things that he was making his patient's do. You can often find his doctor, drawing his patients' blood, taking weights, getting vitals and greeting his patients in the waiting room... things that most doctors would never dream of doing.
He is wonderful with parents and treats his patients (all children) in the most compassionate, thoughtful and caring ways. His patients are all so sick (some of them are dying) but somehow, some way, he manages to bring a smile to their faces! Sometimes he wears funny hats, sometimes he plays games, sometimes he tells jokes, sometimes he even tries to set his patients up on dates with each other, sometimes he rewards them for their good grades or lost teeth, and sometimes he provides his patients with little gifts-just because... Seriously!
Cody has been given money for good grades, teeth that he has lost and on one occasion, his doctor even went and purchased a model airplane for Cody after a particularly rough day at treatment. That's right, after he was done seeing all of his his other patients, he ran out and got a gift for my son-just because it had taken the great doctor several attempts at placing Cody's IV line that day, and that made him feel terrible (not him Cody, him DOCTOR). He even received a beautiful, handmade quilt which will always be treasured by our family. BUT more important than all of those things put together, his doctor talks to Cody in a way that Cody connects with and understands. He makes the situations that Cody (and his other patients) are in less scary because of his fabulous personality!
Besides being a simply amazing doctor, he is an extraordinary person. He has wonderful stories of childhood adventures and life experiences that blow me away! He has spoken of his adventures through Europe and Africa, his summers spent backpacking, hitchhiking and even working in vineyards when he was only a boy. He has spoken of his family and a multi generational rift regarding equally wonderful schools in England: Oxford and Cambridge... and how the family try to recruit children from the opposite sides to attend their university of choice! Besides his love of medicine, he has a passion for history and I am amazed at the conversations that we have had about Los Alamos (my home for 20 years), the Manhattan Project and Oppenheimer.
Each visit with this great man reveals something new and wonderful about him. It's crazy, but we actually look forward to going to treatment each month and hope for a chance that the doctor will stop and visit our room (for more than Cody's exam), and maybe even tell us a story or two. I am truly honored to know such a stunning man and am grateful beyond words for what he does for Cody and our family.
Dr. Patel is our angel on Earth.
We are so grateful to him for all that he does.

Tales from the ATU

WOW! What a morning!
I have to tell you that Cody has had THE BEST experiences possible with his IVIG. His doctor is this amazingly caring, thoughtless, awesome doctor who would do ANYTHING for you! He employs and equally awesome nurse. She is just a kind, FUN, terrific nurse who has made Cody's days at treatment less stressful!
Carol, our #1 nurse, has shortened her work week in order to spend some well deserved time traveling with her husband...and hopefully relaxing a bit!
Now, although I totally think that Carol deserves this time away...Selfishly, we miss her like crazy! She no longer works on Fridays (Cody's treatment day) and her "fill in" is a total ditz!
I won't go into details...but let me just tell you that I have to watch over her every move! She is not confident (something you need to be as a nurse in a pediatric hematology and oncology clinic), second guesses herself and makes stupid mistakes that even I pick up on!
SO.... Cody is hooked up to his IVIG! He is napping, I am blogging and we are happy that Cody's blood was not drawn twice (yep, mom caught it...the ditz nurse tried to do it!) ha ha ha
OH-
We met a little boy who had his first IVIG treatment yesterday. He is 14 months old and just cute as can be.
Looks like we won't be the only IVIG people in the "house" anymore! Not a fun club to be in...BUT the family was so nice and I know that their son will do well!
WELL...I guess that's it from the doc's office! UNLESS something else interesting comes up!
(and a lot more DID happen & I'd be glad to fill you in... however, I think that I will try to be gracious and not completely degrade the ditz on my blog =0)

Little Kofoed update.

Cody-

DOING AWESOME! WOO HOO! Cody is feeling good, looking good, having fun and totally rockin' the summer! It's so fun to have nothing interesting to say about his health! HE IS GOOD!
Damian-
Has a bright orange, beautiful cast on his yet-to-heal fractured arm! The RSD is holding it's own...no better- but thankfully no worse in the cast! FIVE weeks in the cast should hopefully do the trick! Feel sorry for him people- it's in the HIGH 90's here! Thankfully he has awesome parents who paid CASH for his waterproof, gortex lined, insurance-won't-cover-it CAST! The kid deserved to swim the summer away!
Lilliana-
Ugh...UGH....UGH!!!
Lilly has been through the ringer over the past month or two, poor baby! She's been having bad tummy troubles and has had nearly every test in the book ran on her blood (and other things too). Her pediatrician has been thinking celiac...BUT we got some awesome news today when ALL of her tests came back normal!!!! She sees the pediatric GI in a few weeks and hopefully she'll tell us that Lilly just had some freak situation that will resolve in time. I already think that she is some better! ;o)
She did have a HUGE accident on her bicycle the other night! TRICKSTER decided to put her feet on the handle bars and "weave" around the cul-de-sac... her front wheel turned to quickly for her to correct and OVER the handle bars she went! FACE plant, road rash, jammed fingers, fat lip, black eye and bruised knees. She looks like she has been through the ringer and feels even worse! I am so proud of her though! She is amazing and getting a little better each day!
Chris-
BUSY, BUSY, BUSY!
He is, of course, busy at work! He has also been amazingly wonderful and helpful at home too! It's been a rough couple of weeks for me (worrying about Lilly and end of the school stuff). He is totally awesome and I just think everyone needs to know that I have the most awesome husband ever!
Papa-
I am worried about him! He has seemed a little down lately...
He hasn't feeling well and he pushes himself far too hard! I love him and hope that he takes time to rest and to ENJOY life!

BESIDES ALL OF THAT.... we have been enjoying swimming, visiting with friends, taking pictures and loving our extra family time!

Right now, I am enjoying a quiet afternoon. Papa is sleeping, the kids are reading and I am listening to Paxton, snore away! Awe, it's peaceful. I am surrounded by the ones I love and I was just reminded that life totally rocks!

Photographs from an afternoon with Molly

My awesome friends, Dave and Michele, allowed me to photograph their beautiful little girl! She is just an absolute doll and I am so excited to have been able to take these pictures. I worked in a portrait studio for a while (and took a TON of newborn photos) but I have never been more proud of newborn pictures than I am of these. I think that turned out really well!

Birthday Wishes from Stanford.

My beautiful mom

My mom and dad, just days before her passing.

Sifting through the mail over the weekend, my dad came across something unexpected and heart wrenching...a "Birthday" card for my mom, from Stanford University Medical Center. One's bone marrow transplant day is considered their birthday... The first day of the beginning of their new life. A special gift of life given to a person to be celebrated each year! If she were still alive today, she would be celebrating her 12th...I just wish she could have made it to her 10th.

Happy "Birthday" Mom.
Although I feel your presence around me each day, I never feel like that is quite enough. I miss your beautiful voice, your soft touch, your smile and your laugh, your hugs, the way you made Dad so happy and the way joy and happiness filled any room you entered, the amazing way in which you touched so many people and the way in which you loved me, no matter what. You left this world a better place!
I hope that you will always be watching over us and my "birthday" wish is that you are proud of the ones you left behind.
I miss you and love you so very, very much.
Love, Nikki

5th Grade Promotion

Damian is officially a middle school student! This morning, he graduated from Clarance Galm Elementary School! The ceremony was a little long (an hour and a half) but very well done! The kids seemed to have a wonderful time and enjoyed being at their elementary school, as students, one last time!
Here are some photographs from our morning!

He is officially done with school! Cody and Lilly are still at school until 2:45 so Chris, Damian and I are off to a special graduation lunch!

Damian Reese

My most handsome of men is graduating from elementary school tomorrow morning. I cannot begin to express how proud I am of Damian. He is such an amazing young man who is kind, compassionate and honorable, not to mention the fact that he is the most helpful son, the best brother and a wonderful student!

I am overwhelmed tonight, with pride and happiness as I watch my little boy turning into a young man before my very eyes!
I am the most blessed mommy ever!

Life is Good

Honestly, it drives me a little nuts when I read postings where one post after another, after another is complaining about "stuff!" Come on people, is life really that bad? :o) ha ha ha
I have a lot of "STUFF" going on every day... sick kids- and I do not mean a cold or the flu. I mean a kid who has a terrible immune deficiency, a kid who has a nerve condition that has caused excruciating pain for him and a kid who undergoing testing to see if she a disease of of her intestines.
Seriously, I could complain all day....but would it change anything? Nope!
Instead, I am enjoying focusing on my kids and their beautiful smiles, their sweet laughter, the amazing ways that they show me how they love me, the love of my husband and the warmth I feel every time I see my dad.
Life is good... not always easy or fair... BUT
LIFE IS GOOD

BIG splash

The kiddos have sure been enjoying the swimming pool this year!
Cody loves to play on his water skateboard, Damian loves to swim under water and Lilly loves to be safe!
But most of all... they love to make a BIG SPLASH!

Paxton cannot swim well but he does enjoy the water - so we bought him a life jacket! He had a great time swimming with the kids and after he was all cooled off from his dip in the pool, he enjoyed romping around with his "sister" Maggie!

May 31st

I cannot believe that I turned 30 years old today! Seems a little old to me, though I would never, EVER complain about aging. When you have a parent who dies far too young, it provides you with a new perspective on aging in a graceful and dignified way.
I am proud of what I have accomplished in my first 30 years and I wouldn't change a single thing... everything that I have done and everything that I have been through has brought me to today!
I do not know what the next 30 years have in store for me but what I do know is that although money and "things" are nice- nothing, and I mean nothing, is as important as happiness.
I look forward to spending each day being a kind, caring, thoughtful and HAPPY person who is making the most of every moment that I spend in this life!
And while I am 100% embracing a life of happiness, I must admit that I feel a little sad today, wishing that I could be spending my birthday with the amazing woman who brought me into this world. It is because of her, and my dad, that I am ME!

Multiple Personalities

Damian, the thinker!

Cody, the rocker!

Lilly, the angelic one! (most of the time)

Yet ALL of them can be totally goofy too!

I love to see how each one of them decides to express themselves!

My husband, the Movie Star

Oh my goodness!!!
Yesterday was a totally awesome day! Southwest Research Institute, where Chris works in the Space Science and Engineering Division, had a special premier of the new planetarium film about their most recent satellite launch, IBEX.
Now of course, I appreciate certain aspects of my husband's job. His job brings money into our home and more importantly, I appreciate his job because he truly loves what he does and is passionate about his career! However, sometimes I feel that I do not take enough time to fully appreciate what it is that the instruments that he helps to build, really do... and all too often, I am complaining about the money that is poured into the space industry and how I feel that the money could be better spent in the medical field. Of course, sometimes it takes an experience like yesterday's to better grasp the importance of what he does and how our government's money is spent.
YESTERDAY, I learned so much about my husband's job, the importance of it and exactly what it is that IBEX is accomplishing in our great unknown. IBEX (Interstellar Boundary Explorer) is collecting data on the edge of our solar system, known as the heliosphere. This protective layer in our solar system, like a cocoon, helps keep harmful cosmic rays from penetrating our solar system. Without the heliosphere, life on Earth may possibly cease to exist.
To make an interesting and educational planetarium film totally wicked awesome...CHRIS was in the movie, over and over again!!! Of course, he is in a "bunny suit" (his clean room garb) and you cannot always tell that it is him, but it is DEFINITELY MY HUSBAND, hard at work on IBEX!!! I am SO proud of my totally amazing, hard working, awesome husband! He ROCKS!
"IBEX: Search for the Edge of the Solar System" will be playing in planetariums world wide and I definitely recommend that you all see it if you have the opportunity to do so!
For more information on IBEX, go to:
http://www.ibex.swri.edu
http://www.youtube.com/watch?v=dK84m2FgDbU

Ben & Chris (in their bunny suits) working on their next instrument, JADE, for the JUNO spacecraft mission to Jupiter
photo courtesy of SwRI

Backyard Fun

YAY! Look who it is... OUTSIDE, PLAYING IN THE YARD! It's Damian! AND he is smiling! He is still very sore but doing MUCH better! WOOHOO!

Lilliana thought that she looked too "pretty" to play in the sand box so instead she stayed on the outside and only put her hands in... goofball!

She did look awfully cute today though!

AND, of course our Paxton, who is cute as a BUG...or should I say PUG?

My little Daisy!

My little Lilly Bean finished up her first year of Daisy Girl Scouts this week!
I just think she is the cutest Daisy I have ever seen!

This is what happens when.....

...

you are really excited about photographing the lightning storm but it stays too far South! The camera is all ready to go but nothing to click on and before you know it... someone has the bright idea to play with sparklers during a burn ban!
Grown-ups playing with sparklers really CAN make for fun pictures though!

Our friends, Cheryl & Jason, played with us!

Fluffy!

No rain for us this evening but we did have some absolutely amazing clouds!
I LOVED THEM!

These clouds are known as Mammatus Clouds. They are usually a sign of a weakening thunder storm. Their name is derived from the Latin word mamma, meaning "udder" due to the likeness these formations share with cow udders! Bet you never knew that!!!
(neither did I until I researched them tonight!)

Damian and the fractured wrist drama.***UPDATED***

Things in my family never can be easy! I am not sure why we have been blessed by medical oddities in our family but if anyone is willing to take this "gift" off our hands...we'd be SO happy!

A little over a week ago, Damian was chasing Paxton (our pug puppy) through the house. Now, of course he knows that he is not suppose to run through the house....but he IS a kid! He hit a slick spot (thanks to MOM for using the spray sunscreen in the kitchen). His feet came out from underneath him and he landed VERY hard on his left hand. He has a buckle fracture in his left radius...which will heal! The trouble is that Damian, like his mom and brother, has developed Complex Regional Pain Syndrome or CRPS, formerly known as RSD. For anyone who does not know what this nerve disorder is, I like to describe it as post traumatic stress of the nervous system. The nervous system is tramatized by an injury and goes haywire. CRPS is characterized by various degrees of burning pain, excessive sweating, swelling, and sensitivity to touch. Pain may begin in one area or limb and then spread to other limbs. It can be extremely painful and debilitating. Unfortunately, Damian has a very severe form of the syndrome. The pain has not decreased and is actually spreading. He has now had a severe migraine headache associated with the CRPS for the past two day. He will be seeing a pain specialist tomorrow morning and will probably have to undergo a nerve block later in the week. We had been trying to avoid that but it is looking like the nerve block (which will be done in his neck) will be the only way combat the pain.

Damian saw the pain management/anesthesiologist this morning. He said that Damian does in fact have a severe case of CRPS. He said that he needed to do the nerve block right away to help combat the pain. Now let me tell you, Damian is TERRIFIED of needles. He initially freaked out about the whole IV thing and then lost it when he found out that a HUGE needle would be inserted into his neck... Mom's quick thinking and bribery then in sued and a promise was made that if Damian was brave for the horrible experience, his mommy would buy him a Nintendo DSi! Needless to say, he cried until the anthesia knocked him out but was extremely brave, never made a sound or gave the doctor any issues. He came through like champ! He is very sore this evening in the throat and neck BUT it was absolutely worth it! His arm is nearly pain-free this evening! We may have to repeat this in a few weeks but for now, we are happy with the early results!

My many adventures of Saturday! =O)

SO, Friday I flew to Albuquerque with my dad! We spent a wonderful weekend with Gavin, Katelyn and Brooklyn! (see my other posts for birthday pictures and our other adventures!)

Here are some pictures from our VERY busy day!

Our first stop was the beautiful red mesas at Jemez Pueblo where we were able to look around an arts & crafts festival.

We then headed up to the Jemez where we stopped near the Gilman Tunnels. Gavin fished for a bit and the rest of us enjoyed the view!

Then it was off to Los Alamos for a graduation party! Maneesha was one of the little girls that my mom took care of. She has always had a very special place in our hearts and it meant SO much to help celebrate her special day with her! We were so happy to also visit with Anna! She was another of my mom's special kiddos! It was great catching up with both of them and I hope that we will always be able to do so! I know my mom would have been so proud of "her" kids.

Next stop was Shidoni for a nice walk through the scultpure gardens!

After dinner & a walk on the plaza, it was back to Albuquerque! It was a great day full of adventures!

Weekend with Brooklyn

I had such a wonderful weekend with Little Miss Brooklyn! I got lots of play time in and enjoyed spending Brooklyn's first birthday with her!

Swinging at the park!

More pictures of the sweetest angel at the park!

Picture perfect with Papa!

The birthday girl!

Lovin' her some cake!

Black and White

I absolutely LOVE black and white photographs! To me, when I see a black and white... I see beyond the vivid colors to the moment and emotion that was captured. Here are my favorites from my trip to New Mexico!

Riding in the car with Papa & Aunt Nikki by her side!

Kisses from Daddy!

Gavin and Brooklyn in the park.

This is my FAVORITE picture. A helping hand from Papa!

OK, this is another favorite! LOVE the light on Brooklyn's hair! Swinging in the park.

Silly, cute and absolutely adorable!

I just cannot begin to tell you how in love I am with my sweet kiddos! They are such silly, cute, fun, adorable, loving, caring kids!

We are happy to be down to NINE days of school left! YAY!
Damian fractured his left wrist and has a painful nerve condition called RSD. He cannot have a cast, due to the RSD, so he is in a splint and starts PT next week to help desensitize his arm. Cody had treatment last week! It was his second one at 24 grams and I have to say, he did really well! Lilly has been a little under the weather but is on the mend now and EVERYONE is excited that summer vacation is around the corner!

Toothless wonder!

Lilliana insisted on pulling her tooth out tonight and was NOT going to be happy unless she was visited by the Tooth Fairy while she slept! SO, after dinner, mommy tied a knot around the tiny little thing and popped it right out! She could hardly wait to get to bed!

Girls, girls, girls!

I am so excited about all of the baby girls in my life! Although I rarely get to see her; my best friend from my childhood, Gina, recently gave birth to a beautiful daughter! My totally awesome cousin, Jake, and his wife, Shannon, gave birth to adorable twin girls last week. Also last week, my very good friends (and neighbors) gave birth to their precious little girl! And of course there is my OH SO SWEET and gorgeous niece who is turning ONE this weekend! Girls, girls, girls!!! How fun!
I wish that I could spend time with Gavin, Jake and their families as well as my BFF and her cute fam!
Last night, I was fortunate enough to spend some time watching our neighbor's little girl and was even able to take a few pictures of her! She's SO cute!

What a week!!!!

I have to admit that over the past week, I have let my fears and emotions get the best of me. There is a widespread Swine Flu (H1N1) outbreak here in South Central Texas! YIKES! As the mother, a wife, a daughter, a sister and an aunt- I am worried for all of my family, not just here is Texas but across the country. As the mother of a child who suffers from an immune deficiency, I am quite honestly terrified. What would happen if my beautiful little man developed the swine flu and then a secondary infection such as pneumonia? My hands hurt from washing and sanitizing them over and over again... and if you ask my dad, I am sure he'll tell you that I do the same to the kids! I am doing everything in my power to keep my kids safe, hopefully that will be enough! Over reacting- maybe, but until you understand what it is like to live with and love someone who is immune comprimized, you may not be able to completely relate with and my fears.
Anyone who lives in Texas knows what the dreaded TAKS tests are. They are AWFUL for teachers, students and parents... these tests determine school funding and if a student does not pass the test, the are not promoted onto the next grade (without a lot of extra work). The Texas Assessment of Knowledge and Skills finished up for my kiddos today! My kids have always done really well on them but it is extremely stressful and we are grateful for them to be over with until next year! Only five weeks of school left and then they'll have a much deserved break from school!
What else?
My sister-in-law, Katelyn, is always busy blogging! She recently came across a woman in Australia who's little girl has an immune system deficiency (like Cody) and is also receiving IVIG treatments. Through Katelyn, Tiff and I got in touch with eachother. It has been extremely interesting to talk to someone who lives over ten thousand miles away who can relate to what Cody and his family go through! I look forward to more conversations with my new found friend!
Our swimming pool is set-up and we are balancing out the chemicals so the kids can swim the summer away in the backyard! The backyard is looking so pretty and we are all enjoying spending time out there! My garden is coming along great too! I have sugar snap peas, squash, lettuce, tomatoes, onions, peppers and cucumbers growing right now! Yummy!!!

Cody's IVIG Treatment update.

Well, I have to admit that I was totally thrown off when Dr. Patel wanted to DOUBLE the amount of IVIG that Cody receives. He was taking 12 grams over the course of a day but starting last Friday, they doubled that dosage to 24 grams over the same period of time. This is due in part to the fact that Cody has been fighting an antibiotic resistant staph infection in his sinuses for about a month now. He's not contagious to any of us but he has been struggling through the infection with major nose bleeds, dizziness and headaches. In addition- during week four of each month, you can see a decline in Cody's health, apperence and personality. Dr. Patel is hoping that, by doubling his dosage, he can better fight off the staph infection and maintain his health at a more optimal level for the duration of the four weeks between treatments.
Unfortunately, human immune globlulin is just that, a human blood product. Because of this, a patient's body will often try to regect the treatment causing a fever, rash, nausea, vomiting, dizziness, muscle aches and other "flu like" symptoms. Cody usually does really well after treatment but this double dose has hit him really hard.
He's been running a fever, has a bad back ache and stomach cramping. I left him at home with Papa while I ran to get Lilly and Damian and when I returned, he was hunched over, crying because his tummy hurt so bad.
It is so difficult to watch the very treatment that keeps Cody healthy and "going" cause so many awful side effects. Hopefully tomorrow will be a better day...
I know you all have seen these pictures before but it's just a reminder of what Cody goes through every month.

Strike a pose!

Poor Lilly has obviously spent a lot of time in front of a camera! Every time I have my camera in hand, she's striking goofy poses! Here are a few cute ones that I took while we were out yesterday! My personal favorite is the last one!

Busy weekend!

Just a few pictures from our Dino Adventure!
(and an update at the end!)

A dinosaur track!

Chip the Dino Man comparing Cody to a prehistoric insect!

You're kidding me, a roly poly the size of Cody???

Listening to Chip the Dino Man's talk!

Three silly-sweet kiddos!

Lilliana and Damian

The boys!

A prehistoric fish mouth, creepy!

A bird fossil

Dino tracks

Wow... so I have been really busy since my last update! After the school yearbook was completed, I was able to take a few days for myself to recover from that wonderful project! It was so nice to just relax, read, relax, help the kids with homework, relax....water the garden, play with the kids and relax some more!
Last Friday I got up EARLY (4:15am) to take my dad to the airport! He flew to Albuquerque to spend the weekend with Gavin, Katelyn and Brooklyn! He had a wonderful visit with them and always cherishes the time that they are able to spend together! They had a busy weekend, fun weekend... rock climbing gym, petroglyphs, White Sands and a soccer game! Gavin dropped him off at the airport this morning and my dad just arrived in San Antonio a few hours ago! Now he's up in his room napping with his faithful companion, Maggie!
On Saturday, two of my good friends and I hosted a baby shower at the house for another wonderful friend of ours! We had a really nice time and I so enjoyed catching up with the neighbor ladies! While I was at home, doing "girlie" things, Chris took Paxton to the vet to have his next round of puppy shots. The visit was suppose to be a simple, quick trip to the vet that turned into an emergency situation when our little Paxton had a terrible reaction to his shot! Luckily, it happened immediately and the vet was standing right there! Today, he is completely back to normal...phew!
On Sunday Chris had to go to work... BUMMER! He is such a hard worker and is such an asset to his division that he is counted on LOT(sometimes a little too much, if you ask me). So, instead of missing a day of fun without Daddy, we decided to go on an adventure and find our own fun!
We headed out to the lake to check my dad's mail and then to the dinosaur track museum out by his house! The kids had THE BEST time! They enjoyed the tracks and loved "Chip the Dino Man" paleontologist even more! He totally rocked! He gave this wonderful presentation and even called Cody up in front of the audience to compare him to ancient insects!

OH....before I sign off this post I have to share in my proudness (I don't think that's a word, but it's okay)! My totally wicked awesome archeologist brother, Gavin, is going to be doing some work for National Geographic! I just think that is the coolest news that I have heard in a while!

Charter School here we come!

For those of you who do not know what a charter school is; a charter school is a school that receives public funding (like public schools) but has different regulations and statutes while adhering to public school accountability. They are tuition free but often have a private school feel. Some of these schools provide general education while also focusing on certain areas of education. They are gaining more popularity thanks to President Obama embracing charter schools as a strategy to promote "excellence and innovation" in education.

For some time now, I have been looking into an alternative to the "normal" public school system. I have not always been happy with public school administration and policy and when you add to it the over-crowding in San Antonio schools, I just have not been super happy with our own school district. In addition, Cody's fragile health has never been handled to my standards and I have always felt that my kids all deserve the best possible education and though their education has been "enough"- it certainly has not been exceptional!
I looked into private schools but many had extremely strict absence policies that simply would not work for Cody. After learning more about charter school and looking into San Antonio's charter schools, I found one school that I felt would allow for an amazing, top notch education for the kids. So, in January, I submitted applications for the kids and hoped and prayed that we would hear good news. At the beginning of March, we met with the school's principal and were told that so many children had applied that they would have to hold a lottery in order to fill the small number of openings in the school for the upcoming school year. We were a little disappointed and felt that getting just ONE of the kids into the school would be a "win" for us!
Last week, after two months of waiting on pins and needles, we received acceptence letters for ALL THREE of the kids! We are so thrilled to know that next year, our kids will begin a new adventure in education! The school is beautiful and amazing, with small class sizes and teachers and administration who truly want to make a difference in the education of our youth!
So...school uniforms, small class sizes, a kickin' education and a brighter future for the kids, HERE WE COME!

Paxton, the skateboarding Pug!

Today, Chris taught our puppy a brand new trick! Remember that he is not even ten weeks old yet and seriously learned this trick in just a few minutes.... then imagine how totally ROCKIN he'll be in a few months when he is all over the block on his skateboard! He and Cody will have so much fun together! :o)

Easter day fun... and my pity-party too!

It rained this morning! No drought buster but we certainly felt blessed by the rain we received! Papa said that Maggie heard the Easter Bunny during the night because she jumped out of bed and began barking! What a lucky dog!
The Easter Bunny couldn't hide the eggs outside so she left them in a basket and let Papa, Chris and I hide them after the storms had passed! We had some excitement when we opened the door for the egg hunt and Maggie chased after the heard of deer who were planning on helping with the egg hunt! After Papa and Chris returned from their "Maggie hunt," the kids had an absolute BLAST searching for eggs in Papa's backyard!
After the hunt, the kids had fun with their Cascarones! (for anyone who doesn't know what these are, they are egg shells filled with confetti! You break them over people's heads! It's a Mexican tradition that is VERY popular in South Texas!) The kids had a great time getting Chris and Papa...three dozen cascarones later, the backyard was littered with egg shells and confetti!
We had a delicious lunch and headed back home to relax and watch the kids play outside for a bit!
.....................................................
It's so difficult to keep myself from falling into a selfish, pity-party mood sometimes and for some reason, the Easter holiday (season) has found me feeling awfully down!
I couldn't seem to gather enough strength (the emotional kind) to get our Easter decorations out of the attic... they were mostly handmade decorations that my mom had made over the years. I miss her so desperately that sometimes I feel like I cannot breath. Every time I thought about getting the decorations down, my heart began pounding in my chest and I just couldn't do it.
It's been a little over two years since my mom passed away and today was our third Easter without her. I wish she could have been here to see the kids, not just mine...but Gavin's little girl too! Papa made Lilliana hot chocolate in Nana's favorite forget-me-not cup this morning and each of the kids mentioned how nice it would have been to have her with us. Chris knew that I was trying my hardest to keep it together and he did a great job of helping me through the day.
I have such a hard time because I don't like to cry about my mom in front of my dad! He goes through enough- with his own emotions and grief without having to see his daughter hurting.
To add to my gloominess, I have been missing Gavin-A LOT! Before my mom passed away, it was never more than a month or two between visits...no matter how far apart we were. I haven't seen him since Thanksgiving though (and only for a few short days) and I am SO missing him. He is one of the most important people in my life and I have this ache in my heart that just won't go away because I miss him so! I can hardly wait to see him and help he and Katelyn celebrate Brooklyn's first birthday at the end of next month. I am in serious need of brother/sister time! I think that he is such a special person and I feel so blessed to have him as my one and only brother! :o)

When did he grow up?

It seems like yesterday, I was holding that sweet little boy in my arms. His crazy hair went everywhere (some things never change), he was a quiet happy little baby who was always a joy to be around!!! Today, while we were out at the lake, something hit me; as I watched my tall, handsome, intelligent, thoughtful little boy... I realized that he has grown up!
WOW
Damian Reese, you will always be my precious little baby!

Big Dog, Little Dog

Ha Ha Ha!

It cracks me up to watch Maggie and Paxton interact! Maggie is such a mommy and want to baby little Paxton but all he wants to do is bite her floppy ears and chase her tail!

When he isn't playing, you can Paxton sleeping away...usually in the arms of a human friend!

Lyndon B. Johnson

We had a wonderful time visiting Lyndon B. Johnson's Ranch over the weekend. The ranch is absolutely beautiful! From his birthplace in a small farm house to "The Texas White House" to his final resting place, the ranch serves as a reminder of the man (and family) who did so much for our nation during a turbulant time in our nation's history.

Living History Farm

We took Papa and the kids out in search of wildflowers over the weekend... didn't find many but we did head out to the LBJ Ranch and the Living History Farm there. We ended up having perfect weather for a nice little hike and we all had a nice time!

Little patches of Bluebonnets

There haven't been many flowers out this year due to the continued drought. I thought if we drove North we might have some luck but there just weren't many. I guess a few are better than none! Here's to rainy days next winter and a beautiful display of Texas wildflowers next spring!

Mama Bird

I had a totally yummy lunch last week with some good girlfriends of mine! Before we went, my friend, Michele, let me take some photographs of the hummingbird who is currently nesting in a tree in her backyard! I was so excited to get these photos! Thanks Michele!

Tooth Fairy

The Tooth Fairy is making a stop at our house tonight! Miss Lilliana Grace lost her very first tooth today! She was so excited and laughed the whole time! She had to call her Papa and Uncle Gavin right away to tell them the wonderful news! Silly girl is growing up so quickly!

A name for the new baby and other news too!

Our new addition finally has a name! YAY for agreement!

In other news... the strep throat demon continues to cause disruption in the Kofoed home! Last week it was Lilly, yesterday Damian was at the doctor and today it seems to be poor Cody's turn! Cody's immune system is at its weakest point at the moment so he has been hit really hard by the fever, stomach ache and throat pain. His doctor called in a prescription for him and will see him tomorrow for his IVIG treatment.

Our good friends and next door neighbors have had a really rough year. Jason was deployed to Iraq for a year long tour, Cheryl badly injured her ankle and there were many other issues along the way. They pushed through the year with a tremendous amount of courage and strength. Last night after 13 long months, they quietly welcomed their hero home from war. I am looking forward to our family having the opportunity to welcome Jason home later today as well! We may not all agree with the war but everyone should respect and honor the brave men and woman who are there, simply doing their jobs! Welcome home Jason! We are so proud of you and honored to know you and your family.

No Name, Chapter TWO

We picked the kiddos up from school today and on the way home, mentioned that there was a baby bird in the yard that had fallen out of the tree (of course my kids were all about finding it and helping the little baby).... they never did find that baby bird BUT they did find a cute little St. Patrick's Day Pug!
They were so stoked!
Cody thought that maybe we should name him "Lucky" since he came to our family on St. Patrick's Day! Chris isn't keen on the name so he remains nameless! A few other contenders are: Ozzy (Osbourne), Buddha and Gizmo though no one can agree on anything.
For now...he's just cute! We LOVE him and are all really enjoying our new baby!

No Name....

Chris got the kids and I the cutest little baby pug! He has no name yet and the kids haven't even seen him yet! We figured that we would save him for after school as a St. Patty's Day surprise for our little deserving angels!

Spring Break..... blah

Last week the kiddos had spring break! We were all looking forward to a fun filled week of trips to Sea World, playing with friends and relaxing at home....that is NOT what we got! Lilliana had a horrible case of strep throat, the weather was terrible and we had to say goodbye to our bloodhound, Otis. It was a really awful week for the kiddos and so we were thrilled when my cousin Jennifer and her family came down for a visit! Connor and Carly's visit was the highlight of Damian, Cody and Lilly's spring break! Thank goodness for good family!

Just had to get out!

Ugh.... any Texan parent knows that TAKS test days are the pits and not just for the teachers and the students BUT the parents too!

My friend, Cheryl, and I decided to get out of the house today as 4 out of our 5 kids were taking their first TAKS tests of the year today! It was so nice to be outside, enjoying the weather and getting our minds off our poor kiddos! We ended up at the Botanical Gardens and it was so much fun! Lots of pretty flowers and wildlife too!

Low, low, low!

We headed out to Canyon Lake over the weekend to visit Papa and to see the LOW water levels at the lake! We've seen it high and we've seen it low....but never like this~ in fact, it has never been this low. It is sad and very scary! With warm temperatures, low humidity and NO rain we are worried about what is in store!

The "cove" we were playing in is where we use to dock our boat!

Daddy & Daughter Girl Scout Ball

Chris and Lilliana attended a Daddy~Daughter Girl Scout Ball this evening. Lilly was so excited that she could hardly wait to get home from school so that she could start getting ready for her BIG night out on the town with her Daddy! She had a wonderful time but was dreaming away within fifteen minutes of coming home!

Growing Up

I have been trying to let go a little and allow Damian more responsibility and independence! He is eleven years old, a fifth grader who plays the cello in orchestra and who is preparing for middle school. He is an honor roll student who is also the student council treasurer. He always tells me what is going on in his life and seems to be open and honest about everything! Okay, obviously he is an awesome kid! Let go a little Nicole...

So, over the past few weeks, we've been letting him stay up later at night and hang with the 'rents (you know, his oober cool mom & dad)! We've had a ton of fun..playing games, having "late" night chats (like 8:45, you didn't seriously think I was letting him stay up too late, did you?) and bedtime snacks together.
Obviously you are getting the picture that this kid is growing up... I just thought I'd let y'all know exactly how grown up he is:
He got in the car today after orchestra and said he watched the video at school today. Chris was trying to push the conversation, thinking it was some really cool symphony video or something..."No Dad, the video." It took Chris a minute or two to realize that Damian was talking about THE video!
Damian of course was very mature about the entire situation, though he did not wish to discuss the subject in front of his younger siblings! ha ha

Buggin' out!

Just HAD to share a few pictures of my tulips and of course the cutest little green ladybug!

Kindergarten Cowgirl!

Today is RODEO DAY at school! Lilliana was so excited about their "campfire", beef jerky, pig poking and story telling that she has been talking about this special day for two weeks! Of course, all the kids dressed up like cowboys and cowgirls! Wee haw!

Three days a month.

In the past individuals suffering from primary immune system disorders were isolated; kept in protected environments and in the most extreme cases, lived their lives in actual bubbles.

Today, thanks to research and medical advances, people who suffer from immune system disorders can lead relatively normal lives with support care.

Cody is a crazy, carefree little man who enjoys skateborading, rock climbing, bike riding, fishing and living his life to the extreme- every single day! He is the cutest; with his blond hair, beautiful eyes and priceless smile! He is a wonderful person who has tons of friends and maintains straight A's in school. No one would ever know by looking at him, but Cody has a health impairment known as primary hypogammablobuinemia. His body does not properly maintain his serum antibodies, putting him at risk for severe and life threatening infections. In order to help maintain Cody's immune system at healthier levels, he has received all of his immunizations several times over to help build resistance to the diseases they are meant to protect him from, including the meningitis vaccine. In addition, he receives human immune globulin intravenously every four weeks in the hospital. We walk a thin line with Cody, trying to maintain his health while allowing him to attend school and be a "normal" child! He is an absolutely amazing, kind boy who takes his disability in stride... never letting "it" run his life.

Three days a month, I allow "it" to run my life. I start his IV, via his port-a-cath on Thursday. He receives fluids through his IV fluids all night to help hydrate him and combat a scary complication that can occur due to the treatment, blood clots. Friday Cody and I (sometimes Daddy or even Papa too) head to the hospital where he receives GOBS of anti-rejection, anti-nausea, pain medication and of course, his immune globulin. After a day at the hospital, we head home with the slew of medications that we started the day with for more at bedtime and again in the morning. On Saturday, we are usually able to remove the IV and allow Cody to return to being an eight year old!

Three days a month, that's all I try to give it!

Oh happy day!

I still remember our wedding day like it was yesterday! Damian was just a little peanut, stomping on Chris's feet during our wedding ceremony! It is hard to believe that today, we have been married for nine years! I feel honored and blessed to have Chris as a husband. He works hard and does everything in his power to keep us safe, healthy and happy! We have had wonderful adventures, made the best memories and suffered through heartbreaking losses over the past nine years of marriage. Today we are stronger and happier people for what we have been through together. Chris, I love you! Thank you for being my best friend and husband.

Chris took the day off from work today! We decided to visit Mission San Francisco de la Espada. It served as the first mission in Texas, originally established in Eastern Texas but relocated along the bank of the San Antonio River in 1731. In 1826, the Comanches raided the mission, destroyed the corn fields and killed the livestock. During that same year, a massive fire destroyed much of the mission. Fortunately, the chapel survived the attacks and fire. Today, the mission serves as a home to a small community of habits.

Rambling.

It was beautiful outside today! I couldn't believe it when I looked at my thermometer and is was reading 86 degrees! The sky, with its wispy clouds, looked like a water color painting. I took some time to sit out in the backyard for bit, I tried to read and took some pictures but just couldn't focus. I watched a butterfly hop around on my hyacinths and the cutest little ladybug crawling on my daffodils.
I have spent the past few days trying not to fall apart. My little boy, who isn't so little anymore, has been missing his Nana more than usual. He's been wishing she was here, wanting to hug her, kiss her, confide in her. He's overwhelmed about the prospect of middle school and I don't blame him one bit for wanting to talk to Nana. I have to admit that when I think of my mom, I try for happy thoughts and good memories but over the past few days I too, was wishing that she were here. I think that she would know just what to say to help my precious man.
This afternoon, I could almost feel her presence around me...if only she could have told me how to make everything better for my Damian.
Papa picked him up from orchestra this afternoon. It was a nice surprise for Damian and made him feel so special that his Papa would come for him. I don't know what we'd do without Papa. He's so good to us all! I think Damian is even feeling a little better this evening.

Spring has Sprung!

It may only be mid February, but in South Central Texas, the weather is absolutely divine!
Lilly and I spent last weekend in the garden! We planted our "winter" crops: radishes, carrots, sugar snap peas, broccoli and lettuce! Yesterday, she was so excited to see that her carrots and radishes have sprouted!
We also planted a few flower pots! Lilly is so proud of her hard work on the yard and thanks to her, we have spent every free minute outside this past week!
Chris and I even sat out by the pond for a few hours one night and read by candle light!

Saturday School!

(these pictures were taken through the door so they aren't the greatest but at least you'll get the idea!)

The kids are taking classes through the Children's Enrichment Program at Northwest Vista College. This is their third weekend and they are having the BEST time! Lilliana is taking ballet class. She loves to dance and spends the rest of her weekend showing us every step that she learned in class! Cody is taking guitar lessons! Since he has an acoustic as well as a loud electric (thanks to Santa)...we are very excited about the lessons! He is doing fantastic and loving every minute of it! Damian is taking Karate! He is having a wonderful time and seems to be learning so much already! I, of course, am enjoying him learning a little self defense, especially since he starts middle school next year!

A Day Not Forgotten.

(this photograph is the last of them together, only three days before she passed away)

Endless Love. Enduring Love.
Beautiful, kind, compassionate love.

High school sweethearts; my parents knew from the beginning that they were meant for each other. They married shortly after my mom graduated from high school and although their cupboards were often bare and they had little money to their name, they enjoyed the simple pleasures of togetherness. Whether they were studying for exams or walking through the park, collecting plants specimines for my dad's taxonomy classes or visiting their elderly friends in the nrusing home where my mom worked, they enjoyed each moment that they spent together.
Year after year, their love only grew. They moved on in their lives; careers changed and their children were born. My dad would come home everyday at on his lunch break so that he could visit my mom. In the evenings, my mom would count down the minutes until he would walk through the door. With a love so strong and enduring, the time passed by so quickly. From two little toddlers to teenagers, my parents spent every moment possible nurturing my brother and I. From helping with homework to attending every sporting games, science fair projects and high school dances... trips to the ocean, mountains and more, no family could have been closer.
Each year, on this day (February 5th), a delivery of beautiful roses would arrive at our home. From the time I was little, I can remember my mom beaming with pride and her happiness would radiate throughout our home. She loved him so deeply and he felt the same.
On a day that is celebrated by couples who last, my parent's 25th was much different than most. Instead of a romantic dinner or a trip to celebrate; a few kind nurses planned an anniversary celebration for my parents in my mom's hospital room. She was so ill, it seemed so unfair but that anniversary, my parent's 25th, will forever be imbedded deep in my memory for it did not matter to them where there were on that day, they were together on that special day. They were together and nothing else mattered.
Nine more anniversaries passed by. My mom kept on giving and my dad did as well. Nothing can prove one's love and devotion more than caring for a spouse who's time on Earth is drawing to and end. My dad was the best, most incredible husband. He loved her so deeply; he tried and he tried to do all that he could to make the most of each day that they shared in this world. Neither one was selfish but they were both indeed selfless.
One morning in January, surrounded by her family; as the sun began to rise and the birds began to sing, my mom left this world. Her suffering was over, only three weeks shy of their 35th anniversary.
Today my dad is not alone. He is surrounded by love. The love of his family; his children and grandchildren and the love of his wife, forever enduring. For their love is something so pure and deep that no distance or barrier could ever break their bond. She is always with him; loving him, caring for him and watching over him with such pride. Wishing him peace and happiness in all that he does.

Endless Love. Enduring Love.
Beautiful, kind, compassionate love.

My parents, the real life
LOVE BIRDS.

"When someone you Treasure becomes a Memory,
The Memories become Treasures."

Check out our PAWS!

Lovin' our warm January day!

We awoke to the most beautiful South Texas winter day. We spent the morning doing a little cleaning but try as we may... we could not ignore Mother Nature's beckoning!

Papa, our farmer???

Yesterday, my dad came home from work with a HUGE bandage on his thumb...well, actually it was several paper towels secured in place with electrical tape! I listened to the story of how my dear ol' dad cut his thumb at work and instead of getting help there, or coming straight home for help, he went to Walgreens. He bought bandaids and antibiotics ointment and tried to fix it up himself so that I wouldn't freak out! Turns out the bleeding was still too severe and he needed me to help him anyway!
We fixed up that thumb and went on to talking about his day! The kids were doing their homework and chiming in when they felt a need to. My dad was offered a position in which he will be doing some traveling at work and described it accurately as "field work." He and I were talking about how interesting the prospect of this new venture could be when our sweet, innocent Cody became a little worried about his Papa!

"Papa, do you think that they will make you plant a whole field all by yourself?"

Oh my goodness! It was the cutest thing ever! He honestly thought that his Papa would be working for some farmer, planting crops all day and maybe bringing home the occasional bushel of corn on the cob!

Here we go!

Though I have tried, I just cannot stay away from the blog craze! It seems to be a great way way for family and friends to keep up-to-date! I promise that I will try to keep it fun, clean and full of great stories about the crazy Kofoed's!