Day Two at Faith's Lodge

Today we got to know another family. It was great talking to a mom who knows first hand the struggles of raising high maintenance kids! One of their sons had stage four neuroglastoma (blood cancer) when he was one year old. He pulled through, but has tests often to watch for reaccurance. Another mom waiting for the other shoe to drop.

We enjoyed the fresh snow today by taking the kids for a sled ride! It is beautiful up here.

Isaiah and Natalie ride on the sled together! Matt said it was a bit heavy...

The entrance to Faith's Lodge. It looks like Lori and Jeff's basement!

Getting ready to make some s'mores. I've never roasted marshmellows in the winter before!

One big happy family with floppy hats. Some day our kids will be embaressed by this one.

Mmmmmmmmmmmmarshmellows!

Isaiah had so much fun roasting his marshmellows.

Quiet movie time back in the room.

Big TVs and comfy beds. The boys were in heaven!

Comfy couch and a warm Natalie Jane. Daddy's enjoying himself too.

Okay, is it just me, or she getting CUTER EVERY DAY!?! The second tooth is still pushing through, but she is being a trooper. She won the bear at family bingo tonight! Isaiah got a big Hotwheels car, and Jeremiah won a rescue chopper.

She is doing really well keeping her glasses on! Natalie is especially taken by books now that she has better vision. Her new word today was "all done." Really, she says it! I think we have another big talker on our hands.

We will be heading to Forest Lake tomorrow for the broomball tourny! I can't wait to fall on my butt. I ate lots of crap this week, so there should be extra padding. Hey, it is a great excuse to eat those brownie bites...

Faith's Lodge

We are having a great time in Northern Wisconsin at Faith's Lodge. Faith's Lodge is a vacation spot for families that have lost a child, or are dealing with the challange of raising children with life-long disabilities or illness. It is free of charge, and they provide fun activities and meals while you and your family enjoy time free from medical appointments, or as you recover from the loss of a child.

We arrived Wednesday night with excited Jeremiah asking, "Is this a Grandma's house?" I think he still thinks it is a "grandma's" house because he is so free to run around, and other people are making us food! There is a great toy room, a craft area, and a lot of space to sit and relax. There is even a small movie theatre...Isaiah's favorite room!

Natalie is working on her second bottom tooth, and getting over a cold. Mommy and Daddy didn't get a whole lot of sleep Wednesday night!

One of the activities today was painting a birdhouse together as a family. It was a lot of fun...despite the look on Jeeper's face! We also decorated cupcakes.

Matt and I have an ajoining room to the kids, comeplete with a fireplace, deep tub, and a living area with tv!

The kids have the same thing, accept there is a handicap bathroom for Isaiah, and an extra bed. The beds are all Sleep Numbers! I am a 65, Matt is a 60, and Isaiah is still figuring his out. We keep the remote away from Jeremiah!

We went up to the Eagle's Nest this morning and watched the snow fall. It is nice to be in a place where you LIKE the snow instead of DREAD it! Matt's commute is 3 plus hours on these nights at home! We passed a lot of time playing games (Operation, Jenga, Candy Land and Hi-Ho-Cherrios) and crafting. We are enjoying ourselves and are greatful for a break from reality.

Jeremaih sings "Juice Box Hero"

Grandpa and Grandma were playing "Band" with the boys. Grandma Kelly started singing "Juke Box Hero" when Jeremiah pipes in with "I'm a JUICE BOX hero!" Isaiah even thought it was funny. Here is a little taste of an evening with our juice box hero. Now he's singing "Hit Me with Your Best Shot" and playing his fly swater guitar.

Family Update!

Natalie is doing well! The last week has held some "Firsts..."

FIRST TOOTH!

FIRST WORD! (Bye Bye with a wave! So cute!)

FIRST PIG TAILS!

Natalie goes back to Mayo on March 2nd for another echo and to see her cardiologist again. We are praying that her condition has remained stable (not gotten any worse) and her heart is growing.

Natalie went to the Opthamologist (eye doctor) a couple weeks ago. She was diagnosed with severe far-sightedness (just like daddy and Isaiah) and will be undergoing surgery to correct her crossing on April 1st. Her eyes will appear straight immediately after surgery! The surgery will take place at Children's Minneapolis under the care of Dr. Freeman. He did Isaiah's surgery almost 5 years ago. She also got her first pair of glasses, which she loves to play with and take off! They are pink plastic rimmed and sooo cute. I'll try to catch a picture soon!

Natalie also started physical therapy at Children's West a couple weeks ago. Because Natalie is not sitting, rolling, or crawling independently (gross motor delays) she's going to be seen twice a month to help get her moving. We will also begin shopping for her flower-girl dress! Chelsea's wedding is only 16 weeks away!

Isaiah is also doing well. He loves pre-school this year, and will be attending Kindergarden Round-Up in March! I can't believe we are getting ready for SCHOOL! He is working Hard at Gillette using a computer system for communication. His therapists are doing a great job showing Isaiah the ropes, and helping us choose a good system he will use to talk to us! Everyone at school and therapy tell us he is so smart, and doing a great job.

School has also been good for his social life this year, and he has a couple friends he really enjoys. He will be attending his first "friend" birthday party on Saturday. Isaiah got the above science kit from aunty Kerry for Christmas. He has been enjoying making underwater volcanos and learning about acids and basis. He's our new science buff! He loves the show Sid the Science kid, too.

Oh, Jeremiah. We are neck deep in the terrific threes! His past times include playing the drums, drawing, basketball, golf and baseball (in the house). He knows all of his letters by sight, and can count to 20. He has been trying so hard to write his letters, but does not quite have the coordination yet. As a result, he gets very frusterated, and tends to be a perfectionist when it comes to art and writing! He can swing from totally happy and content to comeplete violent melt down in 5 seconds. He also decided naps are not needed any longer, and talking or singing constantly is.

He truly is a test of whole different set of parenting skills! I think I need to buy a book for this one!

A friend of our family is throwing a fundraiser for Natalie on February 28th. Check out the flyer below for more info!

Blessings on your week! Thank you all who have been holding us in prayer, and supported us financially.

Mayo Clinic Visit on January 7th

Natalie Jane in her Christmas Dress and with her fist Cabbage Patch Doll on Christmas.

Natalie’s appointment was at Mayo yesterday. Our first appointment was an echocardiogram. She was supposed to be sedated, but they decided against it because of her cold. She was a very good girl and held nice and still. Matt had his echo at the same time in the next room.

Next we went to see a Geneticist. Because Matt and Isaiah also have the disease, it is obvious that it is a genetic trait. Matt’s parents and sister will be screened next. What they will try to determine is if it is a Metabolic Disorder or a Structural Protein Malformation. Metabolic disorders are a recessive gene (1 in 4 chance) while the Protein is dominant (1 out of 2). They drew some blood and wanted to collect some urine, but Natalie wouldn’t cooperate, so after an hour and a half, we decided to try next time. We will rule out metabolic disorders first, while we wait for approval from insurance to run the 11 Protein Genome tests at the Harvard Medical Lab in Boston. I will go into more detail once we know what the diagnosis is…

After that we went in to see the Cardiologist, Dr. Cabalka and her Cardiac Surgeon, Dr. Dearani. After reviewing Natalie’s echo, they informed us of some new information they gathered from this more thorough echo. Natalie’s Mitral Valve has muscle growth on it. This is not good news. Your heart valves are typical very thin and flexible, making it possible for the to allow blood flow in and out. Because Natalie’s mitral valve has growth on it, it is narrowing the passage that allows her left ventricle to fill and empty. It also has made her valve thicker, and less flexible. As a result, she has mitral regurgitation, which is backflow into her left ventricle. This also means that surgery would be very risky and difficult at this time. If they went in to remove the muscle tissue growth in her left ventricle, they would be going through her aorta, which is about the same diameter at a pen. It is hard to prevent further damage to the heart when the operating field is so small. The more difficult part is in dealing with the mitral valve. It is not repairable at it's current state and size. If they do the surgery now, they would have to replace her valve with a mechanical one. This means being on blood thinners, and eventually replacing the valve with a larger one, since mechanical valves don’t grow. Statistically, replacing valves in children under one are not good odds. The “morbidity” rate is very high and not worth the risk. If we can wait, her heart will grow, and possibly allow her mitral valve to open up a little bit. If her heart is big enough, and her valve opens up enough with growth, they may be able to save her valve. This is the best-case scenario.

In the surgeon’s words, “We are going to drag our feet.” They will come up with a plan, including symptoms that Natalie could develop, that would make the surgery worth the risk. These include evidence of more obstruction on an echo, fainting spells, failing to thrive, abnormal pressure on the lungs or right side of her heart (heart failure) or the death of a young family member with the same condition. We will be purchasing a defibulator for our home to be cautious. The good news is that her body is handling the meds well, and she has not had any episodes. This encourages the doctors that we can afford to wait. How long? No one knows. Surgery is in her future. Lets pray that we can get as much time as she needs, and that that valve would not get any worse so they can save it.

We will be returning to Mayo on March 2nd for another echo and follow up. If you google the surgeon’s name with her condition (Dearani Hypertrophic Cardiomyopathy) you will find a host of papers and research he and his colleagues have written on Natalie’s condition. We like the surgeon a lot, and we have no doubt he is the man for the job. Dr. Dearani said to us, “I am very comfortable with this surgery. We are nearing 2,000 myectomies now, and about 500 have involved the mitral valve. 150 of them have been in young children. It is very do-able.”
Blessings on all of you. Our family has been overwhelmed with your generosity.

Natalie Update

How is Natalie doing? She is doing fine, I don't think she has any clue her body is different...

What Natalie has been diagnosed with is Hypertrophic Cardiomyopathy. She has been given medication called a beta blocker to slow down her heart rate, and relieve some of the symptoms.

The prognosis includes open heart surgery, called a Myectomy, the first part of next year. The surgeon will go in and remove the large tissue build up in her heart that is blocking a valve in the left ventricle.



Her next appointment at the Mayo is January 7th. She will have a more thourough ECHO under sedation (an ultrasound of the heart), see the surgeon, pediatric cardiologist, and a genetic counlser also. I anticipate we will be scheduling surgery that day as well. Meanwhile, she has a follow up at the Children's Heart Clinic in St. Paul on Friday. Jeremiah, Isaiah, and Natalie will all have ECHOs done.

Matt and I were screened yesterday, and we will have our results on Friday. How are we holding up? Good days and bad days. Sometimes I can hardly believe what we are going through, and the thought of loosing Natalie is tangible. Other days I ignore it, and other days my faith tells me that she will come through this. I also fear that the boys will have the same condition, or Matt...I just try to ignore all the bad things. Please pray that Natalie's heart has no change for the worse, and that the medication carries her through to her surgery without any problems. And pray that Jesus would carry all of us. I am scared, and worried and angry. I PRAY THAT WE ARE ON THE VERGE OF THE MOST WONDERFUL STREAK OF BLESSINGS! And that God would open my eyes to see what they are.

Thanksgiving Week

While Matt hunted this year, the kids and I had a few adventures of our own. We spent one afternoon at the Mall of America's Underwater Adventures. Thanks to Aunty Chelsea for coming with!

Jeremiah finally gets the nerve to pet one of the sharks, when it pops up out of the water and scares the crap out of him! He didn't try again.

Isaiah loves petting the stingrays and sharks, and thinks it hilarious when the come up out of the water and splash. Thanks to my mom too, who kept us sane at home during hunting week!







After a rough road trip (the van broke down, and Grandpa Jeff had to come rescue us!) we made it to Wisconsin and had a great Thanksgiving. Lori knows how to cook! We even had an encore dinner the next night: RIBS! Wonder Woman strikes again...

Natalie telling GaGa her Christmas List...I think she'll get everything on it if GaGa has anything to do with it!



Our attempt to take a group picture...a thousand words...

All the cousins spent lots of time in the play room making "Camp Sites." Aunty Taba supervised, and things got a little crazy...but we like it that way!

CRAZY FUN!

We stopped at the mechanic on the way home to pick up the van, and Lightening and Mater were there! It was almost worth it! Thanks Chris, for going out your way to get us to the van.

Jeremiah is potty trained! Here he demostrates his newly learned trick on the side of the road on the way home.

Sunday we went out to get our Christmas Tree. It was fun picking out the most expensive tree on the lot. Apparently we wandered into the Frasier Furs...they gave us a deal! Hopefully the tree next year will have a different van under it.

I hope everyone enjoys the Christmas Season! Look for blog updates on Natalie coming soon.