Our little Wright Family

Home Sweet Home...for a little while anyway.

2012-02-07T12:06:00.001-07:00

Friday afternoon I boarded a train leaving Seattle, rode for 17 hours and was greeted by the two most handsome guys! Bobby and Cody picked me up in Shelby (about 2 hours from home). We drove to Great Falls, had some lunch, and then came home for a little while before hitting the basketball games in Cascade. I can't even explain how much I needed a break from Seattle and how much I missed my family at home. I am hoping to be fully rejuvenated before I head back on Sunday. I chose this week to come home because it is a special week for Cody. Saturday is Senior night at the school and of course, I HAVE to be home on the night that they honor this years Seniors, before their last home game. Here are some pictures from Saturday's game...

Cody, taking it down...

Cody

Going around his defender.

Shooting a free throw

And swish...

Sydney and the other cheerleaders.

Carla is with her Grandma Wright in Seattle. Between yesterday and this morning she has coughed out 3 small casts :( I'm sure that I don't have to express how nerve wracking it is for us that this is going on at all, let alone while we are not there... But, I have the utmost confidence in Bobby's Mom and her ability to take care of Carla. She said that Carla is active and that her color is good. She is not having a hard time producing the casts and Mom is taking good care of her. So, I'm not going to rush back to Seattle.

Tuesday, the 14th, Carla will get her first treatment to bring down her antibodies (and her immune system). I am nervous about the whole thing but we think (and the doctors think) it is the right move to make and that it will help Carla get a heart faster. The treatment is the first of four and will be about a six hour IV infusion of what is called IVIG. I hope that she tolerates everything well. I am becoming so heartbroken about everything that Carla has to go through. And yes, she takes it all in stride. But I feel like the kid needs a break! She has had more shots, meds, surgeries, procedures and pokes than any person should have in a lifetime! She needs some serious fun .... I can't wait until she gets her new heart, is stabilized and we can take her on another dream trip involving Princesses. I don't know how we will be able to get it accomplished, but I do know that Carla deserves it, so we will find a way to make it happen! Let's shoot for a year or so from now...maybe for her 6th birthday...we will see.

That's all for now folks!

Love, Jen

Bringing the antibodies down...

2012-02-01T18:28:00.001-07:00

Carla and I had an appointment today with the transplant team to discuss what they have decided about Carla and her high antibodies. They want to start her on a therapy to bring them down. Unfortunately, the therapy will suppress her immune system, so she will be more likely to get infections...but they believe it will open her up to more heart options and will speed the process of getting her a new heart. Right now her antibody levels make it so that 7 of 10 hearts wouldn't work for her. If we can bring the numbers down, maybe we could get her a donor heart a bit faster.

While this all makes perfect sense to me, I can't help but to feel overwhelmed. Sometimes I feel like I am a stack of blocks and the Lord just keeps piling the blocks on...I wonder when I'm going to fall over into a pile. But, even though things are hard, I KNOW everything will be alright. Carla will get her heart and eventually we will be reunited with our family. Until then, I need to remember to breathe in and out. I need to remember to pray and to trust in The Lord's Plan.

Please keep us in your prayers. Thank you!

Love, Jen

p.s. Here are some cute pics :)

Sliding at the park yesterday.

She's having fun!

Woo hoo!

Today, all dressed up from going to the doctor (Carla has to get dressed up for the doc, you know).

Super hammy Toot!

Dancing around.

She is so full of life!

And joy..

And happiness....

This is what keeps me going every day :)

You have reached the end of the internet...

2012-01-30T18:06:00.002-07:00

The other day I wanted to add Cody's Senior picture to the side of the blog and guess what? I found out that I have run out of free picture storage space on the blog! So, for the reasonable price of 5 dollars a year, I was able to purchase another 20 GB of storage...so, I can upload more pics :) Otherwise you would just get stuck reading words, with no fun pictures to look at...and we wouldn't want that! Especially since I have such CUTE pictures to add today!

Friday Carla and I went to Renton to spend the weekend with Beverly. She took us to her hairdresser and Carla got her hair cut! Yay! She got to sit in the kid car for the cut, which made her super happy.

Check out that cool ride.

Carla was pretty excited :)

After getting her hair done, we ventured over to Little Caesars for pizza!!!! Yay! My favorite fast and cheap treat! We all enjoyed a slice in the car and then headed to Sam's Club to buy myself a bluetooth. Now I can answer my phone if I am driving somewhere and it rings! Yay! After getting back to Bev's house JD (the kitty) needed some lovin. So, Carla and Bev snuggled him up. It was sweet.

Beverly, Carla and JD snuggle up on the chair.

Carla and JD. She sure does LOVE JD.

A side shot of Carla's hair.

I am really happy with the job Bev's gal did! I didn't have to re-cut it myself...which is always a bonus!

Saturday, Bev's next door neighbors were out cleaning up the tree debris from the last couple weeks of snow and wind. Carla just couldn't stand herself and so took them over some cookies she and Bev had made earlier that day. She is such a social butterfly and is always so excited to make new friends :)

Headed next door :)

Sunday I ran home to pick up a couple things, so that we could spend one more night with Bev. At the apartment door was a package Bobby. His customers, Mr. and Mrs. Barnes, had given him a present for Carla. Here she is opening it up!

Carla was super excited to open up her present!

Reading the card.

Going at the wrapping...

IT'S A BEAUTIFUL DOLLY!

Loving on her dolly.

Carla loves her baby.

We promptly made her a make-shift bassinet and put the baby to bed.

It's an American Girl baby dolly and she named her Aurora Jen Wright (after her favorite Princess and her Mommy) So sweet. Thank you to the Mr. and Mrs. Barnes, for thinking of us and sending Carla such a lovely baby girl.

Also, I spoke with the transplant nurses and we have an appointment on Wednesday to discuss what the antibody specialists think we should do about Carla's high antibody levels and moving forward with transplant. I will keep you posted :)

Love, Jen

A special thank you to Beverly for spoiling us, loving us and letting us be your family :) We sure do love you! It is not often in life where you have a friend as special, sweet and wonderful as you. We are so blessed.

Cardio updates

2012-01-26T14:45:00.003-07:00

Yesterday morning Carla coughed up yet another cast, and it was a bit on the larger side, which of course brings back all of those helpless feelings of the last year. We had our cardiologist appointment set for 12:45 but they had a cancellation, so we were able to get in about an hour earlier. First we went to x-ray, and I am glad to report that the doctor said that her x-ray looked better than the x-rays in December. The December x-rays showed some indications of casting, but the one yesterday looked much better. So, that is good news. Then we were off to echo. Her echo looks unchanged, which is also good, because her function has not decreased and her fenestration is still open. So, the question would be why the casts then? The answer I was given is that she has a failing Fontan and the casts are an indicator of that. It is so interesting to me that her heart function can be good, but her Fontan is still failing. She has never had a good Fontan though, I'll admit that. And while we are admitting things, we are lucky that she made i through the Glenn, as her function was not good at that point, and we are also lucky that her surgeon even went forward with the Fontan when he did. Because, her pressures were high, on the verge of too high...and pressures have seemed to always have been the issue with Carla. So, having gone through with the Fontan we were able to put off heart transplant for 3 years. But, we have had nothing but problems since Fontan and I am looking forward to a time when Carla is blessed with a whole heart. And, I am so thankful that she has been strong enough to power through and recover from all of her Fontan complications. Her oxygen saturation level was at 79, which leads me to believe that a person's body adjusts back to their baseline after an altitude change. We are going to incorporate an albuteral inhaler in to her daily routine, instead of just when she is sick. So, that is good too. The doctors are going to discuss listing her a little differently, so that she gets more offers, they are also going to discuss whether or not we should be treating her with meds to bring down her antibodies. They had come down in November, but then were back up again in December and now are back around where they were in November again. This still leaves her with not a whole lot of matches, but it is good to know they came down again. The last thing we did yesterday were Carla's Synagis shots. Two shots, at the same time, one in each arm. Poor baby! I had hoped that she would never have to endure the horrendous pain that is Synagis ever again. When she was a baby she used to get so upset at the doctor's office during her regular Synagis visits, that she actually threw up in the waiting room towards the end of her Synagis adventures. Unfortunately, RSV is what revved up the Plastic Bronchitis last March ... and had she not had RSV she probably would not have ended up in the hospital for 9 weeks and on her death bed for weeks. So, we have to resort to using the dreaded Synagis shots to keep the RSV away. She cried and hyperventilated. But, the transplant nurse was so sweet and brought her a beautiful stuffed animal, and stickers....and Mommy took her to McDonalds afterwards. So, at least she got treats for her pain. Rewards are important.

In other news...the slide shows at the bottom of my blog will be disappearing in March because the Slide web page is going away. Because of this I am re-doing all of my slide shows. I have re-done a couple, so now they have music and I am really proud of them. If you want to watch, just scroll to the bottom of the blog and you will find them.

Love, Jen

Another cast...good grief....

2012-01-24T13:31:00.000-07:00

So, Carla coughed up yet another cast this morning. I knew it was going to happen at 6:00 a.m., when I heard her first cough. She coughed a couple more times in the next couple of hours and by 7:45 she had coughed up her 2nd cast in 2 weeks. Poo. I don't really understand what is going on with this plastic bronchitis, and why it is coming back. Everything was under control but since relocating to Washington she has had 5 cast days now. So, does it have to do with an altitude change? An allergy? Better O2 levels? Moisture in the air? What? And what's most frustrating is that the doctors do not and will not have the answers to these questions, because it is just as much a mystery to them as it is to me. So, we will continue to sit here, in our own personal prison...and wait...and pray. Keeping up with Carla's meds, doing what the doctors think we should do, and praying are the only things that we can do.

I would be a big fat liar if I didn't admit I am disappointed. I was hoping that being in Seattle, and being able to list her as a 1a, instead of a 1b or 2, that we would have an organ by now. I honestly thought we would get a new heart in December and be home for Carla's birthday in April. Hey, I'm an optimist. But, here we are at the tail end of January and we sit, and we wait. And I hear stories from other families about how they waited over a year for an organ. As my Grandma Morgan would say: Yee Gads.

In other news, our good friends, Jeff and Jessica had their baby yesterday. There were some complications with the pregnancy and the doctors took him via c-section. He is adorable and doing well, weighing in at a tiny 2 pounds 13 ounces! We are so happy that baby Ryder is doing well, and that his Mommy is too.

Proud Mama Jess and Ryder :)

In other, other news.... I rearranged the living room again.... now Carla can run around and dance. I think I am finally satisfied with how the room looks...feels more like home (except modern...my decor is more Victorian).

Carla with her Sleeping Beauty dolly, dressed as Sleeping Beauty :)

Singing and dancing...a favorite past time. She is so her Daddy's girl.

Hammy and Beautiful...

Snow Day!

2012-01-19T12:27:00.001-07:00

We are having a couple of snow days here in Sea Town! That's right, there is about 4 inches of snow on the ground (at least where we are) and there is all day news coverage on the snow... and the hospital called to reschedule Carla's appointments, so that people could work from home as much as possible. It's funny in a way, but refreshing at the same time. Do you know that when Cody was in 6th grade, we drove 23 miles down the highway, through the most treacherous snow storm, so that Cody could make it to his baseball tryouts? He was a first round draft pick, made his first home runs that year and went on to be on the All Star team, so it was all worth it. But, that 23 miles in to Great Falls and then the drive home were some serious nail biters! It's kind of nice to not have the pressure of getting out in it, when you KNOW it would be safer to stay home. At the same time, I have to tell you, I am BORED OUT OF MY SKULL! If I would have thought that there would be snow here, I could have brought Carla's sled and snow pants, boots, hat, gloves, etc. But nooooo.... I brought a coat that would be sufficient for rainy cool days, not cold snowy days. We have an umbrella...and I have to tell you, I HAVE NEVER USED AN UMBRELLA IN MY LIFE! When I was a little girl I remember asking my Mom to buy me one and she said "We live in Montana, you don't need an umbrella." And so, when it occasionally rains at home, I brave it without an umbrella (the wind blows so hard in Great Falls and Cascade that it would probably ruin an umbrella anyway). But, the other day...Carla and I busted out the umbrella we bought her in Disney World ... and it was PRETTY AWESOME!

Anyway, enough on the weather. Things here are fine. I am going stir crazy and am tired of being Carla's only playmate. But, I am also grateful to have her, so this is all part of what is necessary right now. I keep waiting for the call that will change our lives...but int he mean time, we are working on Carla's preschool work, playing Dragons and Princesses, Bowser and Mario as well as watching some Sprout on cable. Right now Carla is cutting and gluing while taking care of her "baby". She is getting better at cutting and writing her letters. So, I am proud of her :) She is excited to show her Grandma and Daddy when they come to visit in February and by then she will be REALLY GOOD!

Love, Jen

Another cast...

2012-01-16T14:07:00.001-07:00

Carla has been feeling well for a couple of weeks now and then this morning she coughed a bit and eventually brought up a cast. When she spit it out, it was the size of a normal loogie (I know, gross) but I put it in the sterile container with sterile water, like the docs want me to and it spreads out quite a bit. I am super thankful that her cast was small, but still curious as to why now they are cropping up again. She doesn't seem to be sick and we are in our own apartment, where she is not around any animals or excessive dust or anything that I would figure might cause her lungs to be irritated. So, I guess this is just one of those plastic bronchitis mysteries. Praying that she stays healthy and that we don't have any more issues.

Other than that, things have been normal around here. We went and had lunch with Bobby's cousins Tina and Dusty on Saturday, and then to Bev's to watch the Broncos get their bottoms kicked royally. Mother Nature is trying to make us feel right at home here in Seattle, and it snowed a bunch yesterday and will continue snowing on and off through the week. So, we are hunkered in until it warms up a bit! People in Sea Town don't know how to drive in the snow and ice, and they don't have the equipment to make the roads safe either. We do have a cardio appointment on Wednesday, so that may be the first time we get out and about until then.

Love, Jen

Carla, skyping with Grandpa and Grandma Sue the other night :)

Mother Nature, making us feel like home with the most beautiful sunset!

Carla, with the sunset ;)

All dressed up, and dancing around!

More of Carla Dancing :)

She was having a really good time!

More dancing...

What do you mean I'm a ham?

Running around in a circle, singing and dancing about.

Yesterday after it had snowed a little bit.

Carla, with the snow :)

Good Morning!

2012-01-11T11:25:00.003-07:00

Well hello there! It is the 11th of January and I figured I had better get to updating the blog!

We had been busy with family the first week of January and this weekend we spent with Beverly. So, there hasn't been a lot of "me" time for blogging. Also, I had some internet and cable technical difficulties, but now I think those are ironed out as well!

Yesterday I started an Isagenix 9 day cleanse. You start right out of the gate with 2 days of no food, but of course supplements and liquids and tons of water. Isagenix is different, because it is a whole body type of a deal, instead of just a poop cleanse (to try not to be too gross). I felt pretty good the whole day, and every time I was hungry there was always a little something more for me to drink or eat. They do have these nasty little snack things, which I detest, but I went ahead and followed the plan. And guess what, I am starting day 2 feeling quite a lot better than I had the day before I started. The tension in my back muscles is less and I feel clear in the head and energetic. I am excited to see how well I feel throughout this next week and afterwards.

Yesterday was a house cleaning day, and I also decided to rearrange the furniture. The lines and use of space had been bugging me and now I am much happier with the way things look and feel around here! I'll show you pics in a second.

Today Carla and I are going to head over to the hospital for a blood draw. We have an appointment with the transplant clinic next week and I would like the results of the antibody test at the appointment. I am hoping that her antibodies have come down a bit more, because if not, the plan will most likely be to start meds to bring them down. As they come down, she will be a good candidate for more hearts...and we are ready for her perfect heart.

Carla's cough FINALLY went away the other day and I am so happy to report that her lungs sound very clear and well. Now, the key will be to just keep her healthy! Which we are working hard on doing and I am sure being in this apartment has helped considerably :)

Love, Jen

Carla with my Uncle Jerry, Me and my Dad.

I was very pleased to have had the opportunity to see my Uncle Jerry on the 4th of January! I haven't seen him in so many years and love him very much! Carla enjoyed him as well :)

The back part of the living room "BEFORE"

The back part of the living room "AFTER"

The front part of the living room "BEFORE"

The front part of the living room "AFTER"

The 2nd bedroom "BEFORE"

2nd bedroom "AFTER"

A whole living room shot, after.

Carla, being silly last night.

Carla Monday night, playing with her Strawberry shortcake toy that I bought for her with the money Matt and Charla gave me for her :)

With Rapunzel's tower, Cinderella's tea cottage and Strawberry Shortcakes's cafe, Carla is working on a village for her little princesses to play in!

Visiting Friends

2012-01-03T22:02:00.000-07:00

We have been busy busy, visiting friends and enjoying ourselves in general ever since Dad & Sue got here. On Sunday we went to Bev's house to watch the Bronco game. True to her usual form, Beverly was so sweet and accomodating to us. She had meats, cheeses, crackers, veggies, fruits and cookies...and of course beverages. The Broncos were disappointing but at least we had good friends and food, so it made it alright.

Yesterday we went for a drive up to a friend of Sue's, named Dolly. She is an 80 year old little lady and sharp as a tack. It was an enjoyable visit. She has a parrot, and Carla enjoyed very much saying Hello and Goodbye to the bird....over and over.

Today we went to the doctor to get a baseline visit with a pediatrician, and also to get Carla's 1st synagis shot. Carla was approved for Synagis, probably because RSV is what nearly killed her in March last year. RSV and Plastic Bronchitis don't play well together. The doctor visit was a bust! We spent just over 2 hours in the doctors office and didn't get to see the normal doctor she will end up seeing (instead we saw a resident) AND no synagis shot, because their shipment hadn't arrived. So, we will have to go back for the shot most likely on Friday. I was hoping for grandparent support for the shot ....I remember how painful they were when she was a baby :( ... But unfortunately I will have to do the shot alone on Friday.

After Carla's bust of a doctor visit we made our way up to Marysville, WA to see a dear old friend of my Moms, Matt Mossbrucker. Matt was actually like a brother to my Mom when she was a little girl, and he and his wife, Charla, were so sweet and kind to us. We visited for a while and then they took us to dinner at a very nice restaurant. I love the fact that my Mom was so special that even now, when people talk of her their eyes light up. She left such an impression on so many people....I am so honored to have had such a Mom as mine. Thank you Matt and Charla for the lovely evening :) We are so blessed to have people like you in our lives.

Love, Jen

Carla, at the doctor's office, waiting for the doctor.

My Mom and Matt, back in 1951.

My Dad, Carla and I with Matt and Charla :)

Of course, more Christmas presents. Charla made this adorable and extremely useful pillow/toy for Carla. It is perfect for when she sleeps in the car seat!

Carla with her Monkey pillow/toy.

Charla, reading to Carla. So sweet.

My folks come for a visit.

2011-12-31T22:52:00.004-07:00

My Dad and Sue are here for a visit and we are having a terrific time! They arrived last night and we promptly had to open the Christmas presents that they came bearing. We loved everything and are so appreciative to everyone who thought of us this year.

Today we decided to take a little adventure down the shoreline of Seattle. We found a Fish and Chips shop, ate, and then drove down the coastline checking things out. We happened across a a park by the ocean and spent a little time there before finding our way back home. It was a nice time and we all enjoyed ourselves a lot.

Tomorrow we are going to Bev's house to watch the Broncos kick some Chief butt, and to visit with Bev. Sue is also going to meet her other granddaughter, Destinee, at the airport as she has a 3 hour layover at SeaTac.

Here is to a much better New Year, and to never spending another one without my sweet husband.

Love, Jen

Carla with the backpack from Uncle Bill & Aunt Tristan.

Me, wearing the shall/scarf, from Adam & Jennifer.

Carla and her Grandpa, being super sweet.

My Dad is so silly. One of the things I love most about him. :)

The view from the restaurant we ate at this afternoon.

My Dad and Carla, at the park we happened across this afternoon.

These are 2 of my favorite people. :)

Carla and her Grandparents Morgan.

MY favorite picture of the day!

Walking by the ocean.

Swinging by the ocean

Strolling by the ocean. :)

A Girly Night...

2011-12-30T15:27:00.001-07:00

Carla and I had a fun girly night last night. First we put on her Hello Kitty press on nails that I got her for Christmas, then we took them off and put jewels on her nails...then she dressed as a ballerina and we danced around the apartment...then we did her make up, danced around some more and throughout it all we would stop for a silly photo shoot here and there. It was a fun night :) Here are the pictures to prove it!

Oh, look at those nails...

Doesn't she look pleased with herself...

Being hammy

Hmmm...

Our little darling.

Toot's toes, bedazzled...

Toot's fingers, cheek and ears, bedazzleld!

Dressed in her new ballerina outfit and dancing around...

Getting dressed up and dancing about...these are a few of her favorite things ;)

After putting on a little make up

Doesn't she look pleased ;)

She is SUCH a girl.

Photo by Toot.

Also by Toot, but I'm helping her to not drop the camera.

Carla and I

Christmas with the Wrights :)

2011-12-28T16:37:00.000-07:00

Our little Wright family came to Sea town for Christmas! Bobby walked in the door around 6:30 p.m. on Christmas Eve and Carla just started screaming with joy! Next was Cody, Grandma, Papa, Uncle Tom and our friend Reva. After feeding the starving masses we opened presents, visited, played and eventually Bobby, Carla and I took off for Bev's house, because Santa was expecting us there, not here in the apartment. Actually, Bev said we could stay with her before we were approved for the apartment. Knowing that she was looking forward to having Christmas with us too, and wanting to see her as well, we spent the night there Christmas Eve. Carla konked out on the way, so it was really nice for Bobby and I to visit with Bev that night while she slept. We ended up staying up until after 2 a.m. I don't know where the time went, but it flew by. Christmas morning we got up and Carla opened her presents from us, Bev and Santa. The rest of our family met us at Bev's around noon and we all sat around, visiting, eating mass amounts of food that Beverly had prepared and just enjoying ourselves. Around 4 we left and headed over to cousin Tiffini's house for a huge Christmas feast! There was so much food you wouldn't even believe it. Ham, Turkey, Stuffed Pork Chops, stuffing, mashed potatoes, gravy, homemade mac & cheese, homemade rolls, scalloped potatoes, amazing green beans, fruit salad, lots and lots of pie and I can't even remember what else. After pretty much eating ALL DAY LONG we all came back to the apartment that night feeling very loved and extremely full!

Monday morning Bobby and I went and did a bunch of shopping for the apartment (food and some necessities). Of course, upon arriving back at the apartment and cooking dinner we immediately realized there were some other things we needed... And, the Brita that we bought was cracked down the side. Bummer dude. Anyway, we made spaghetti (oops no parmesan cheese), and garlic toast (oops, no pot holders or cookie sheets) but we made due and everything was great. Tuesday morning we woke up early and Bobby and I made bacon, eggs, & biscuits for everybody. Later in the day Tammy, Cody and I did a little running around. A glass and a coffee cup and met their demise, so we had to find an IKEA to replace them. After driving around in circles for a while, we finally were able to find it. Holy Huge Store Batman! I had never been to an IKEA...interesting. Daylight was a burning so we were in and out of there and then off to Toys R Us, because Carla just didn't get enough for Christmas (LOL) but there was a vacuum cleaner that Belle had the Carla LOVED, so we wanted to get one for her too. Of course, while we were there we saw a PERFECT other toy that Cody HAD to get for his sister. She loved them both. Later that night the kids (Cody, Thomas and Reva) went out to see one of Tom's frat friends and they also went up to the Space Needle. I've never done the Space Needle at night...I bet that was a pretty cool view, although, it was windy. Bobby's Mom pulled my hair through a cap and highlighted it, Bobby took a nap and Roger and Carla entertained each other. We all (including Carla) stayed up until around 11:30 p.m.

This morning the family got up, ate a little bit and then took off to head back to Montana. I have been cleaning, set up my printer and relaxing. Carla has been napping for about 2 hours and my family is most of the way home. We enjoyed them so much. Sure do love my little Wright Family.

Love, Jen

Cody with a pair of shorts, from the Seattle 20-30 Club

Cody's other present from the Seattle 20-30 club.

The first thing Carla opened from the 20-30 Club.

Grandma, Carla and Thomas...all of the gifts on the table were from the Seattle 20-30 Club. How amazing is that? We are very thankful for their generosity.

Daddy/Daughter lovin

Uncle Tom got Carla this super cool Rapunzel tower and toy. It was a hit!

Putting it together...

Holy spread Bev! Bev is such a giver and we love her so much!

The Carla cookie Bev made for Toot.

Carla and Bev Christmas morning.

Carla with her Sleeping Beauty doll/dress

With her cool Princess V-Tech from Bev.

Santa got Carla some Baby All Gone diapers.

All Carla wanted for Christmas was a Baby All Gone....which was actually a Baby Alive, because she wanted to be able to feed it and make it poop and pee. Santa did not disappoint. She was, after all, a very good girl this year.

Feeding her baby.

Giving her baby a bottle.

Holding her baby...

Burping her baby. :)

Snuggling with Daddy.

Snuggling Uncle Tom.

They are really cute together.

Baby Monkey, baby monkey, riding on a pig... baby monkey.... it's a song and it's on You Tube and I suggest if you have never heard it, you don't...or it will be stuck in your brain for life.

Tina, showing Carla the blanket she made her.

Belle, opening the gift we got her.

Mom and cousin Dusty.

My kiddos.

Carla and Belle, being adorable and getting ready to head off to the bedroom to play.

Holding hands.

Look, I really was there!

Cousin Tiff.

Cousin Crystal and her hubby Larry.

Carla and Reva :)

Carla Toot.

Cousin Tina.

Reva, Tom and I, visiting.

Crystal's daughter, Kristen, with her new Christmas barbie.

Reva and I.

Carla and Tom, playing a memory game.

Carla, kicking some butt.

Larry offers Carla $5.00 if she beats her uncle again...

She wins! Fist bump!

Photo Updates..

2011-12-25T00:51:00.001-07:00

So, I don't really have a lot of time to think and post, but I did want to get these photos out there for everyone. I also wanted you to know that we have gotten moved into our new apartment and that we are super happy! I hope you all have a very Merry Christmas!!!

Love, Jen

Carla with Tink.

The other night at dinner.

Carla on keys!

Carla with a volunteer, the other night at the RMD House.

Beautiful.

Carla with presents from our heart friends in California.

Our new living room.

Another view of our living room.

Going to the kitchen.

The kitchen

The dining room

Another view of the dining room

Looking from the dining room to the kitchen.

In the living room, looking towards the guest bathroom and bedrooms.

Another view of the living room.

The master bedroom.

Another view of the master bedroom

The master bathroom

The guest bathroom

Utility room.

The guest room

Another view of the guest room.

Our New Digs!

2011-12-22T17:24:00.000-07:00

Well, our prayers were answered and we were able to get into the triplex that has previously just been for cancer patients. We are so blessed that this family made an exception for our family and we couldn't be more thankful! Carla and I went to look at our new digs this afternoon, and we will be moving in tomorrow! Just in time for Christmas. I tell you what, it is amazing. I will post pictures as soon as I can, but won't have the internet for a period of time between moving out of the Ronald McDonald House and getting our Comcast hooked up next week. You know how awesome this new place is? Heat, water, garbage, electric, cable and internet are all provided .... as well as it being fully furnished and a very nice, large, 2 bedroom apartment with 2 bathrooms. I can't say how extremely excited and blessed we feel.

But, I am in a rush, so have to run! My love to you all!

Jen

We've Been Adopted!

2011-12-20T22:40:00.000-07:00

When we first got here there was a form that families who were going to be here over the Christmas Holiday could fill out, and if they were lucky, they would get adopted by a company, who would send a gift to your children. Well, tonight the front desk called and told us that our gifts had been delivered and we needed to come and pick them up at the front desk. I was expecting two or three gifts...we literally got a whole box full of gifts. Mostly for Carla, of course, but a couple for Cody as well and a $30 gift card for Bobby and I to Target, so I can use that for necessities (which is awesome) and 2 gifts for me. All I can say is how amazing and overwhelmingly awesome! The company that adopted us is called the Active 20-30 Club of Seattle. I can't say how thankful we are for their generosity. They also wrote a really sweet letter saying how proud Santa is of Carla...which I read to her and she enjoyed immensely.

In other news: Carla and I pretty much laid low all day...she has a cold and I'm not keen on spreading it around, so we only went down to the kitchen to eat and tried to stay away from people and sanitize our area when we were done.

In awesome news: Cody hit the winning basket during the basketball game against Ft. Benton tonight! I am so proud of him and wish so much that I could have been there to enjoy the moment with him. Go Badgers! Awesome that you won!!!

Love, Jen

Carla with her Tinkerbell dolly that Auntie Marlene and Cousin Kim brought up this weekend.

The box full of gifts!

Carla, excited, standing in front of all the presents.

That little thing poking out in the back is the Christmas tree ;)

Tinkerbell had a spa day...

Carla wanted her hair put in 2 ponies, then she wanted to see the back of her head...this was my solution to that :)

Self shots...

Sick again... :(

2011-12-20T09:49:00.002-07:00

Carla is sick AGAIN! Being around all these kids and people at the Ronald McDonald House is just NOT working! She has a cold, but the last time she had a cold, last week, she ended up coughing up 3 casts and spending 2 nights in the hospital. I really don't want to be doing that! We need to be secluded from other people until after she gets her heart, or for a while afterwards...at least after she gets her heart though she won't have to get plastic bronchitis along with a cold. So stressful :( Our social worker at the hospital has contacted a family who has a furnished triplex that they rent out for a good price, but it is for cancer families. So, we are hoping they will make an exception for us. We should know hopefully this week. Please pray that they make an exception for us... we need so badly to be away from everyone, but don't want to set up a whole apartment here...it is so expensive and such a pain in the bum.

Love, Jen

A Great Big Thank You!

2011-12-16T18:45:00.003-07:00

I just wanted to thank everyone who has been sending Carla and I Christmas cards and boxes of Christmas joy! We have received two boxes, from two separate heart families. The first, from the Allred family, in Washington. And the second from the Flaniken family in Texas. So now we have a baby Christmas tree, fully equipped with lights and ornaments. We also have crafts and treats, jammies, a hair clip, a stuffed animal and several other thoughtful stuff. Nobody knows better what it's like to be away from home either at a holiday, or any time, than a heart family.

I also wanted to thank our friends and family who have been sending us cards and books as well. We are so blessed to have so many people who love and care about us.

Please keep up the prayers and Carla will get her new perfect heart soon.

All my love,

Jen

Carla with our Christmas tree and her Dolly from Franny

Window clings...

Carla with the Ronald McDonald House tree

Excited to go meet Ronald McDonald!

I know she doesn't look happy, but she really was! :)

Hospital Updates

2011-12-14T11:26:00.000-07:00

So, we have spent 2 nights in the hospital and since we have been admitted Carla hasn't coughed even once! She is doing perfectly (Thank You God). I am pretty sure her Plastic Bronchitis just reared its ugly head because she had a chest cold...and also because The Lord wanted to remind us why we are here. Sometimes you get fooled into thinking that everything is better and then you're not sure that you're doing the right thing. So, this is that reminder that we are on the right road and that a new heart is indeed the direction we need to go.

So, the plan is to discharge us today to the Ronald McDonald House and just hope and pray that she stays well and that she gets her new heart soon. They did increase her sildenafil, aldactone and azithrimyacin meds too. Which makes sense. Here are some cute pics :)

Our Christmas tree at the RMD House (it's the card we got from the Courthouse gals).

Carla putting clings on Bev's sliding glass door.

Carla and my beds :)

Being cute.

Carla and Mommy

Eating Trscuits

Our shared room (leaves a little something to be desired).

I wanted to also thank everyone who has sent Carla and I Christmas Cards! It is so fun to get the mail and be reminded that people are thinking of us :)

Hospital Beefs.

2011-12-12T22:20:00.002-07:00

So today after calling the doctors and letting them know that Carla had coughed up 3 casts, they wanted to see her right away. After seeing her they wanted to admit her, just for observation. Since admitting her, I have been pretty irritable. Now, I don't generally like to complain BUT I have to say, the first day of admission in a hospital is so terribly annoying! So, here are my beefs: 1) having to explain Carla, her treatment and what plastic bronchitis is, what her symptoms are over and over and over....2) the nurses NEVER bring the meds on time; 3) having to wait 2 hours for the cafeteria to prepare Carla's food; 4) The fact that they can't figure out how to bring me a simple pediatric nasal cannula, they instead want to bring me a high flow cannula, and now I have to wait until nearly 10 p.m. for them to come and explain WHY they want her to use a high flow cannula...I'd like to see how they want to keep the damned thing on her face! Especially since she is 2 hours past her bedtime and getting crabby!; 5) the fact the even though I told them that Carla wants her meds in the form of a pill, they bring her 25 mgs of liquid sildenafil in a syringe... I told them to take it back and bring me a pill, and or a pill and a small amount of liquid. The nurse couldn't figure it out, so Carla had to down it in the liquid form; and my final complaints... Sharing a room with some strange man and his baby, being told that I have to go down the hall to go to the bathroom, because the bathroom in the room is just for the patients AND having to go to another floor to shower. I'm sorry, but with the amount of money hospitals charge, don't you think they can afford to give us our own room!? Ok, that's my FINAL complaint. Sorry, I don't mean to be a complainer... just had to get that off my chest.

Now, I had better go to bed and get some rest so that I can quit being so darned crabby!

Love, Jen

Plastic Bronchitis

2011-12-12T08:29:00.002-07:00

Carla's plastic bronchitis has reared its ugly head again. She developed a cough Friday night and by yesterday at 2:00 p.m. she produced a tiny cast. It was only about an inch long and as thin as a toothpick. We were all hoping that it would be the last of the casts, that maybe she had just developed a cold and it caused the cast. But then last night she coughed up a cast of one of her lungs. It was very thin, but still the whole side of one of her lungs. This morning she produced another one, probably the middle straight piece of her lung. I have a call into the transplant doctors and we will find out what they want us to do. Do they want us to come in so they can examine her? Admit her? Run tests? What do they want? Do they have any ideas why this would all of a sudden crop back up? This is that ugly reminder why we are here,waiting for a heart. I could do without the painful reminders.

Please pray for Carla, that she is well and healthy and that we get her perfect heart very soon.

Love, Jen

:)

2011-12-09T08:23:00.001-07:00

Here is a picture of Carla with Santa from Tuesday. She enjoyed sitting on his lap and visiting with him for so long. It was sweet. Speaking of Santa, and his elves....I received a box yesterday from some ex-coworkers at the Courthouse. It was so sweet. They put together a lovely card, blanket, toy and a money order for us. It is so neat that these ladies that I worked with would go out of their way to brighten my day! I started working at the Courthouse when I was 21 years old. At the time I was the youngest one there and it felt like I was working with an office of Moms. Something that I appreciated very much, since I lost my own Mom when I was 12. So, sending out a special THANK YOU to the retired Courthouse bunch, who instead of exchanging gifts with each other, thought us and made our day a little brighter. :)

Carla with Santa the other day :)

Seattle Adventures.

2011-12-05T23:08:00.001-07:00

We had a little adventure on Monday...Carla wanted to play outside, so we took on the outdoor toy at the Ronald McDonald house. It didn't last long, because it was a bit chilly (and shady) but she did have a run down the slide and explored a little bit. Afterwards she played with the giant doll house somebody made and donated, and then we drove downtown and hit the Aquarium. It was very cool and we had a nice time. We made it back to the Ronald McDonald House just in the nick of time to have a yummy dinner of chicken, brown rice, broccoli and a spinach salad. It was so nice to have a healthy dinner.

Tuesday Santa was at the Country Club down the road and so we went there and Carla got her picture taken with him. They weren't very busy, so Carla sat on Santa's lap for at least 10 minutes visiting with him and telling him all about herself, etc. Then, we went to the hospital for a finger poke and ran in to Bobby's cousin, Tiffini and her daughter Isabelle. Isabelle had an appointment and afterwards they came over and visited for a awhile. It was nice. Carla's INR was 1.7, so the plan is to put her back on 4 mgs of coumadin a day and check it again on Friday.

Today, Wednesday, we had a cardiologist appointment at 10:20 in the morning. We made it to the parking garage at 10:20, so were running a TINY BIT late. It turned out alright and they got us in pretty quickly. Carla had her little EKG, Pulse Ox, blood pressure, etc. and everything went well. Carla's oxygen reading was 90%, which is way higher than at home. Sea level does a body good. At home her last oxygen reading was 76%. I had a nice visit with one of the transplant coordinators, the gal who took Carla's vitals, and Dr. Law. I feel very confident that we are in the right place and that Carla will be getting her perfect heart sometime soon. Dr. Law told us that we need to enjoy ourselves as much as possible. Those are some doctor's orders that I don't mind following.

I can't say enough about how amazing the Ronald McDonald House has been. They have so many activities and things to offer for us to do. All we have to do is keep an open mind, and do new things. Meet new people and learn to enjoy strangers. I am getting better at it. And I am starting to find my Zen place, if that makes any sense. I feel peaceful. And I am confident that the Lord has a plan. I try not to think about the things I have no control of, and it helps me to stay calm.

On another note: Cody's first Sr. varsity basketball game is Friday. I am so sad that I don't get the be there :( but, I will be there in spirit and I know that Cody knows that I wish so much I could be there. I wouldn't miss it if I had a choice. Some things you just have no control of. Bobby's folks will be there though. So I am thankful for that. Love my boy. Miss my hunny too :( Christmas can't come too soon.

Here are some pics from our adventures...

Love, Jen

Carla playing outside at the Ronald McDonald House

Peek A Boo!

Getting ready slide...

This is going to be fun!

Being cute...

Playing with the ultra cool doll house.

A guy hand built this, it took him like 2 years, and then donated it to the Ronald McDonald House.

Being super cute at the Aquarium, standing by the Jelly Fish

By the tropical fish.

Fish all around.

Giant wall of fish...

Go Seahawks?

2011-12-05T10:49:00.001-07:00

I've been a Bronco fan for as long as I can remember. My Uncle Norm lived near Denver through most of my childhood, I'm pretty sure nearly every member of my family has been to a Bronco game at one time or another, I went to a playoff game when I was in high school. My Dad always watched Bronco football and even my Grandma and Great Aunt cheer on the Broncos. But, being a westerner, there has always been a special place in my heart for the Seattle Seahawks, especially since they were taken out of our division ;) That being said, I was excited to find out that the Seahawks were hosting our Sunday brunch. We had their booster club, 3 cheerleaders, the mascot and even the pep band performed for us! Carla was thrilled to meet the cheerleaders and talked at length with them...in true Carla style. She found the Seahawk to be quite terrifying at first, but she still posed with him for a picture and then had a rush of exhilaration afterwards. We had an amazing brunch that consisted of bacon, sausage, pancakes, hash browns, fruit and juice. Afterwards Carla got a picture with the cheerleaders and the mascot and then we went outside and listed to the pep band perform... they were A..M..A..Z..I..N..G!!! Holy cow, I was super impressed! After, we walked up to the hospital (THE SUN WAS SHINING AND NOT A CLOUD IN THE SKY!) and got a finger poke. Carla's INR was down to 1.7 (Friday it was at 7.2). So, we got the call from the doctor and she said to give her 3 mgs of coumadin for the next 2 nights and we will check it on Tuesday. Yay! Monday is a poke free day! After going to the hospital we decided to have an adventure, so we found an Applebees (Carla's choice) and had some lunch. Afterwards we made a stop at Staples for a couple of things we needed and then made our way back to the Ronald McDonald House for dinner. I shouldn't have eaten again BUT we needed to meet a lady friend of a friend of ours who was helping serve dinner with the Renton Lions club...so we ate again. Today, I feel super lethargic and tired. I will be eating healthy today... ANYWAY, I will get to letting you view the photos.

Love, Jen

Carla and the Sea Gals

Carla with the terrifying Seahawk

That was exciting!

With the Sea Gals and the Seahawk.

The Very Cool band.

I was super impressed and thought Cody would have LOVED this.

Sun shining and all!

Playing with the train set...she loves this.

Carla likes to play with this train set, just about every day.

Hanging out in Sea Town...

2011-12-03T18:06:00.001-07:00

Carla and I have been getting along alright here in Sea town. The other day we took a drive down the road, found a Safeway, did some grocery shopping and then hit the Radio Shack to pick up the Wii charger that we needed. Afterwards we came back to the Ronald McDonald House, made some lunch and did some visiting both with each other and with new people that we have been meeting. We have met quite a few nice people here and I am trying to be less hermity and more chatty with strangers. Also, almost daily they have activities with different groups. The other night there was a group who had wreathes and decorations for us to do. Then there was a group who helped us make beaded bracelets. Today there were people doing gingerbread houses. Carla and I showed up late (because SOMEONE wasn't paying attention to the activities that were going on) so we didnt' get to do a house. But, it's still neat that they were doing them. Today a group came in and hosted a movie night. There is a theater in the basement and we had popcorn and candy and watched Despicable Me. It was fun. Tomorrow there from 10 to 12 the Seahawks are going to be here for brunch. That will be interesting. I will have to bring my camera and see whats going on. I'm not sure if it is the actual players or not...we shall see. Also, the Lions club is putting on dinner and one of the ladies involved is friends with our friend Bev. What a small world!

Yesterday we had to go to the hospital to have some blood drawn for labs. We found out that Carla's coumadin level was through the roof! It should be at 2 to 2.5. It was at 7.2!!! Good grief. So, we held her dose, gave her a bunch of peas and then had it re-checked this morning. It was still at 3.8, which was better, but still critically high. I am so thankful for her carefulness! We will be holding the dose again, she has been eating peas and we will get another poke tomorrow.

After getting labs done yesterday we drove to Bobby's cousin Tiffini's house. Carla and her cousin Belle got to play for a couple of hours and I got to visit with Tiffini and actually watch a movie! I can't remember the last time I was able to watch a whole movie. After Tiff's we went to Bev's, visited for a while and spent the night with her. Beverly spoiled Carla, with coloring books, crayons and some new long sleeve shirts and a pair of pants and her friend June spoiled her with a goody bag full of a jump rope, puzzle, candies, and a little blanket. We are so blessed to have such a wonderful support system here in Seattle. One cool thing too is that Bev and Tiff live 7.2 miles from each other! So, it makes it easy to visit them both in one day! Less traveling back and forth means less money spent in gas...and the less money spent the better!

Here are some cute pictures from the last couple of days. :)

Love, Jen

p.s. Still miss my boys like crazy. :(

Carla, putting the Christmas clings that Bev bought her on the window. Bev is so thoughtful and we are so blessed to have her in our lives.

Carla spent quite a long time with these clings.

She wanted a picture with the wreath. :)

Yesterday Carla and Belle dressed up as princesses and then wanted us to take their picture :)

Here they are being super cute and sweet together. Cousins are THE BEST! I should know, my cousins are the bomb!

Our little Princesses.

Here is the bracelet that Carla made, it now serves as her name tag by our door. :)

Getting settled in..

2011-11-30T10:28:00.001-07:00

Carla and I are settling in to our new digs in Seattle. The Ronald McDonald house here is so nice and it makes it a lot easier for Carla. Around every turn is a new thing for her to play with. Today we have to go to the hospital to sign some paperwork but other than that I think we are just going to hang around here, do a little bit of preschool work, play and relax. I have been trying to make Carla be a little bit more independent, which has proven to be frustrating for me, BUT the neuropsych testing showed that she is perfect in every way except that she has a hard time with the fine motor skills with her fingers. Cody had the same issue...hmmm... She said that it is easy to want to do everything for your child, especially when they are sick, but that I need to make her do more things on her own. So, we will focus on that while we wait for the heart. This morning the fight was picking out and putting on her own clothes. She said and I quote: "You do it! I can't!" I explained to her that she needed to do it. After she was done (and I only helped a tiny bit) we were so proud of her for being so big. This will be good. I am very aware that this is operator error on my part. I did the same thing with Cody, I realized this best of all when I instinctively opened Cody's soda for him...when he was 12. He looked at me like I was crazy and said...um, I can do that. I'm honestly surprised I'm not one of those crazy ladies who cuts up my husband's food! HAHAHAHA!!! Hey, if you can't laugh at yourself, who can you laugh at?

Anyway, here are some cute pics!

All my love, Jen

p.s. I miss my hunny and my sweet boy :(

Getting moved into our room at the Ronald McDonald House

The playroom in the basement...

Carla loves little houses

Ride 'em kitty cat!

The impressive play room

pretty cool

The laundry room...Maytag donated all of these!

Our room.

I am sooooo happy for all the storage!

The bathroom area.

Carla with her Minnie, yesterday morning.

Being silly at breakfast yesterday.

Such a cutie pie!

The eating area...

Looking into the kitchen area.

There are 4 kitchen areas in here.

The dishwashers.

Last night after dinner there was a group that was giving away wreaths and decorations, so that we could decorate. Pretty cool.

Christmas in November...

2011-11-28T11:07:00.001-07:00

Before leaving for Seattle, we had a little Christmas for Cody. All he wanted for Christmas was a laptop computer... We were able to find one on e-bay and he was very pleased :) I also got him a little i-home and ear buds. So now, he is ready to rock. The computer is cool because it will service him well for college as both an entertainment center as well as a work station. I am very in to gifts with a purpose. So, this was a good one.

I am sad that we aren't going to be home for Christmas. But at the same time, I feel comfortable knowing that we are where we are meant to be and that the Lord has a plan. I spoke to Dr. Law yesterday and Carla has been listed here in Seattle. I have to sign a form tomorrow, to transfer her 1a time from Salt Lake to Seattle. Dr. Law thinks that she should be listed as a 1a by Friday. Which means, things could go very quickly. He also said that her antibodies are still pretty high and we will test her again in a month. If they are not a lot lower he will start medication to bring them down.

Yesterday we moved in to the Ronald McDonald House across from the Seattle Children's Hospital. It is a very nice place and I will post pictures of that soon.

Love, Jen

Cody with his i-pod doc and ear buds...

Enamored with his new computer.

Spoiled at Bev's House :)

Carla and Bev, loving on each other.

We are so lucky to be close to Beverly. She is such a blessing.

Senior Pics, ect.

2011-11-26T10:22:00.001-07:00

We finally got Cody's Senior pictures and we couldn't be happier. He looks so handsome. It is hard to believe that he is a Senior this year...we love him so much and couldn't be more proud of the young man that he has become. Here are the pictures...

The professional shot :)

This one looks the coolest on the wall.

This one is most people's favorite.

and this one is my favorite :)

We love them and are very happy with how they turned out.

The other day Carla was watching a show with her head phones and wanted to snuggle with Cody, luckily my camera was close by.

Carla, getting ready to go outside and play the other day.

Riding around in her princess car :)

The other week at Seattle Children's Hospital.

Thanksgiving...Carla got the flu :(

A picture Bobby took of me in my new coat.

A New Chapter...

2011-11-21T17:01:00.001-07:00

We will be starting a new chapter in our lives, almost immediately. Carla will be presented to the transplant committee in Seattle on Monday, the 28th of November. Therefore, we will be traveling to Seattle on the 27th. Carla and I will be staying at the Ronald McDonald House in Seattle while Bobby and Cody stay home and continue to work and go to school. It is so overwhelming to think that in less than a week we will be in a new town, waiting for a heart. I am so thankful that we will be close to family and friends.

We saw our home town Cardiologist for the last time in a long time today. He is on board with our decision and wishes us well. We have been so blessed to have wonderful doctors and care throughout Carla's journey. Seattle will be no different. We are headed to a top notch facility and will be coming out the other side of this journey as transplant parents, to a daughter with a four chambered heart. We will have to adapt to Carla's new disease, that of being a transplant recipient. There will be new meds and new complications and risks. But, at least she will be pink. I am looking forward to seeing her run and play and just plain function with a four chambered heart.

Please keep little Miss Toot in your thoughts and prayers as we embark on this new adventure.

Love, Jen

Home, Sweet Home...

2011-11-18T08:50:00.001-07:00

We are home again! We finished up our last appointment with the Transplant Team on Wednesday around 2:00 p.m. After that, we hit the road. Snoqualmie Pass was a bugger and it was snowy/rainy all the way to Spokane, were we decided to park it for the night. I got my first full night (6 hrs) of sleep without waking up in about a million days and felt pretty refreshed. After waking, we hurried along so that we could make it home just in time for Bobby to get ready for work and go. I made some phone calls and visited with Cody. Pam from Seattle called and told me that Carla's PRA blood labs came back and they are getting way better. The PRA labs measure the levels of antibodies Carla has developed towards antigens. In Seattle they call having antibodies "being sensitized". Pam explained the test a bit better to me and so I will start at the beginning: There are 2 Classes to the test. Class 1 and Class 2. In April, Carla's Class 1 was at 48 and her Class 2 at 91 (highly sensitized); in May it was at 48 and 89, so had barely gone down; in September it was t 42 and 51, so had started to come down a bit. In October it was still at 42 and 51 and Carla's test on Monday showed her to be at 22 and 26! So, she is coming down nicely. This means more opportunity for more hearts.

They are presenting her to a committee on Monday, the 28th. After that we will know what she is listed at. Dr. Law would like to list her at a higher priority level than Salt Lake had, he feels that the Plastic Bronchitis warrants higher priority because of it's ability to sneak up and be so deadly, and the fact that it is so unpredictable.

At this point we are trying to make all of the right decisions and move forward. It is kind of like being between a rock and a hard place. On one hand, she seems to be doing well, so keeping her own heart would seem to be a better choice. Because, getting a transplant heart is essentially trading one disease for another. BUT on the other hand, it is better to transplant while she is healthy than while she is on death's bed. Her chances of survival are much higher in this scenario. And, if she gets back to being at death's door there may not be a heart ready for her and she could die waiting. So, our 2 choices, as I see them, are: 1) under react and 2) overreact. We will be making our decisions and I will keep you advised.

Love, Jen

Our First day in Sea town...

2011-11-14T21:49:00.001-07:00

We had a long day at Seattle Children's Hospital. First there was an echo, then a visit with the social worker, then lunch and finally a meeting with the transplant doctor, and a heart surgeon, followed by the best blood draw of all time! They are obviously a top notch facility. Carla's O2 saturation, on her toe, was 83. At home it is 79, on her finger. (Fingers have a higher O2 reading because they are closer to the heart). So, clearly sea level does make a difference. Tomorrow we have appointments with Neuropsych, Hematology, Pulmonary and Anesthesia. And here's where I have to throw a little bragging in.... The transplant doctor said it will be interesting to see how Carla tests with neuropsych, because she is so intelligent.

After our doctor visits we got a hold of Bobby's cousin Tiff and arranged to have dinner at a yummy Japanese buffet in Federal Way. It was super great and the company was awesome. It was so fun to watch Carla and her cousin Belle play together. Cousins are the best! We had a great time.

I'm beat and ready for beddy.

Love, Jen

Carla and Belle :) Where was my awesome camera when I needed it!?

Ready for Seattle!

2011-11-11T10:57:00.001-07:00

I talked a little bit about this before, but now we have a date and a time. We leave Sunday morning for Seattle. We have appointments at 9:30; 10:30; 12:30 and 1:30 on Monday at Seattle Children's Hospital. On Tuesday we have appointments at 9:30; 11:15; 12:30 and 2:00 and then on Wednesday we have appointments at 8:00; 12:00 and 1:00. After the 1:00 appointment we will be driving home, so that Bobby can get back to work on Thursday. I am looking forward to seeing what Seattle Children's thinks of Carla and how they think it would be best to move forward. We are also looking forward to finding out what Carla's oxygen level is at sea level as well as seeing friends and family in the Seattle area while we are there. I will let you all know how things go and will also take lots of pictures and try to squeeze in a little bit of fun around all of the appointments.

I have most of our packing done and have also created a binder with all of the pertinent information we should need. I have the GPS programmed and we are ready to rock. I am thinking about going to the grocery to buy some snacks for the drive and so that we don't starve to death while at appointments. Nothing like a hungry child at the doctor's office. And, let's face it, when my blood sugar drops from being hungry, I get super cranky and can't think straight...so we wouldn't want that!

I'll be in touch!

Love, Jen

Halloween, etc.

2011-11-02T17:28:00.001-06:00

We had a nice Halloween! We took Carla to the Cascade PTA Halloween party here in Cascade and then did a little trick or treating. While at the party we ran into a friend of ours and her son, Benjamin. So they came along with us trick or treating. After a short while I had to get home to hand out candy, so Cody, Sydney and Sydney's family took Carla around for some more trick or treating. So nice!

Tuesday Carla had her finger poke in the morning. Last week they increased her coumadin dose to 4 mgs a night and so we were checking to make sure her INR was alright. It was perfect. In the evening, I got the call from Seattle Children's Hospital. I spoke with a Cardiologist/Transplant doctor for about 20 minutes. They seem a little bit more aggressive than Salt Lake and want to meet with us soon. We should find out tonight or tomorrow when we have to go to Seattle for a 2 to 3 day consult with there specialists and transplant team.

After talking to Dr. Law we were off to Cody's band concert. He performed well and we were super proud of him :)

Here are some pictures :) Love, Jen

Carla, in her new pink vest!

Halloween Princess Carlollypop

Looking Darling :)

Me with my Halloween Princess.

Playing a game at the PTA Halloween Party

Carla with her friend Benjamin :)

Cody, showing his support at the Halloween party

Benji was very interested in checking out this cat...

Benji was a little bit more excited about the giant cat...Carla was somewhat reluctant ;)

The best one I could get of these two both looking towards the camera.

Tuesday morning, there was a tiny bit of snow falling and Carla was trying to catch it on her tongue.

Being cute after her finger poke.

Carla on Papa's lap at Cody's band concert last night.

Cody's on the drums :)

Carla and Benji made the front page of the Cascade Courier :)

Public Speaking Debut

2011-10-30T09:54:00.000-06:00

Yesterday I had a little public speaking debut to help raise funds for Make A Wish. Being a writer, not a performer, I was a tiny bit nervous, but felt that it was an important enough cause to get my nervous little bottom up and help raise some funds for the foundation that not only provided an amazing wish vacation for our family, but somehow made us all feel more like normal human beings again. For those of you who want to know what I said, I am about to cut and paste my speech right here:

At the beginning of this month my family went on a wish trip for my daughter, Carla. Carla is 4 years old and was born with a heart condition called Hypoplastic Left Heart Syndrome. Essentially, half a heart. She has had a very difficult couple of years and in March she was listed for a heart transplant. Carla, being a princess herself, wished to meet the princesses at Disney World. So, we left on October 2nd for her Disney World Adventure. And I have to tell you....what an adventure it was. Carla got to meet and visit with all of the princesses. We were given the opportunity to spend 3 days in Disney World, a day in Sea World and 2 days at Universal Studios. On top of that we were staying at the Give Kids the World, which was kind of like a theme park in itself. Everywhere we went, everyone referred to Carla as Princess. It was all about her. She got to meet Pluto, Mickey and Minnie, and all the Princesses. Every day for a whole week it was a new adventure. And, as the week progressed, we watched our daughter grow. Her imagination was taking off and so was her confidence level.

The week before our trip, Carla said to me. “Going to Disney will be kind of like going to the hospital.” I told her it would be so much better than going to the hospital. The funny thing is that, going to the hospital has been the only planned trip our family has been able to take since Carla was born. Before she was born, we used to go on a family vacation every year. But since, it has only been surgeries or hospital stays. So this trip was special for our whole family. It was also special because this year has been a particularly difficult year. In March, Carla was hospitalized for 6 weeks. She was on the brink of death more times than I can count and this is when she was listed for a heart transplant. Even after coming home from Salt Lake, nearly 10 weeks later, it was hard to believe that everything was going to be alright. If you have never been through it yourself, it is hard to imagine what emotions go through a parent’s mind, when a child is so sick. Even after she was better, we couldn't get our lives back to feeling normal. We still have the upcoming heart transplant, and the sheer horror of what we had gone through had somehow sucked not only the joy but also the optimism from the very depths of our marrow. For the past several months, we have been living as shells of the people that we once were. Just trying to make it through to the next day, having serious anxiety issues and being thankful that we still have our daughter.

Carla’s Make A Wish trip was such a huge turn around in our family’s state of mind and well being. That much needed break from the world, all the love that was placed upon us, and all the happiness we saw Carla experience, watching her grow, change and acting more like a “normal” four year old, had a way of somehow filling us back up and replenishing our souls. Before Carla’s wish trip I was broken. Not a day went by that I wasn't filled with anxiety and worry. But now I am whole again. So, if you are inclined to donate to a cause, I whole heartedly believe that Make A Wish is an amazing cause. It not only changed our daughter’s life, but also our whole family’s. We cannot thank them enough. Thank you.

As I said these words the Once Upon a Dream picture medley played behind me. The sound was turned off, but everyone got to see our vacation pictures as I spoke. Afterwards there was a lot of kleenex and hugs going around. I found the experience to be very rewarding and told Cynthia, the Make a Wish lady, that I would be willing to speak again if they ever wanted or needed me to.

In other news: Carla had a finger poke on Wednesday and they have decided to bump her coumadin up to 4 mg a day, instead of 3.5 She has had a couple of low readings, so that's good. Also, when I refill Carla's meds, we are changing her blood pressure med to one that the transplant doctor feels a little better about, to get her ready for her transplant. Also, we have spoken to the doctors about changing transplant hospitals to Seattle Children's. I know, this is a big decision, and nothing has been finalized. I wasn't going to say anything until after we finalized everything, but I changed my mind. I like the idea of Seattle for a couple of reasons. We have family and friends in the area, a support system that we just don't have in Salt Lake. Also, Seattle is pretty darn close to sea level, and Carla did so well at sea level, so we think that it would be easier on her. Also, we like the Seattle area. It is someplace that we have considered living in the past (and Bobby actually spent his teen years there) so, it just feels more like home than Salt Lake. We look forward to talking to and meeting our new medical team in the near future.

Love, Jen

Once Upon a Dream

2011-10-15T11:31:00.000-06:00

Since we've been home.

2011-10-14T09:14:00.002-06:00

We made it home Saturday night around 9:00. Carla spent the night with Grandparents Wright and Sunday morning we were up at the crack of about 6a.m. Still on FL time, and in that case, we had slept in. We have pretty much just slipped back into home life. Bobby is back to work, Cody back to school, me back to my Tuesday and Thursday workouts and Carla back to her usual routine. But, I have to tell you, I feel a lot better now than I did before the trip. That ball of anxiety that was constantly hanging out in my stomach has seemed to subside. I am a lot more calm feeling and happy in general. The trip really helped fill up my joy/happiness meter. I had felt pretty sucked dry after the years events, but I feel much better now.

Yesterday we took Carla and got her hair trimmed. While at Penneys, we saw the most beautiful dress for her Christmas pictures! I can't wait to put it on her and start taking pictures! She is going to look darling! It's funny how every year, in October, I am chomping at the bit to do her Christmas pictures...I usually do them in November, but want to do them in October. I am also chomping at the bit to get the disc in the mail from Disney World. I can't wait to take those pictures in and get them developed! When Carla was in my belly I decorated her room in Disney Princess. I bought a princess calendar, took 8x10 picture frames, cut the calendar pictures out and framed them. It worked out really slick but, NOW I have actual pictures of her WITH princesses, so I'm going to replace the old pictures with new pictures of her with Princesses! Pretty exciting if you ask me! I'm also really excited to do a video, with music and pictures with my Windows Movie Maker. Yes, I know, I'm a big nerd.

Tonight Carla has a date to spend the night with her Grandparents Wright. Tomorrow we will be going to Helena, eat some Jade Garden for lunch, possibly hang out with friends while Bobby sets up and then Saturday night Metal Steel is playing in East Helena. So, Bobby and I will be doing that, while Carla spends some time with her Grandparents Morgan. It will be a nice weekend and I am looking forward to it.

Love, Jen

Make A Wish video medley :)

2011-10-11T09:31:00.001-06:00

Carla's Make A Wish, Day 6

2011-10-09T09:49:00.002-06:00

Friday was our last day in Florida and we decided to spend it exploring Give Kids The World.

We got up, had some breakfast in the Gingerbread house and then afterwards walked around a bit.

Carla sat down at the mushroom and wanted her picture taken (she has gotten way better at posing for pictures since being here).

Then we walked over to the fountain, and she wanted her picture taken here...

Then over to the giant, chocolate covered strawberry...

After that, we went to the museum to learn more about the place we were staying at. So touching. A man named Henri Landwirth, a Holocaust survivor, started Give Kids The World. I also bought his book and started reading it on the plane. It tells of his life as a little boy, surviving Nazis Germany, concentration camps, death camps, the end of the war and then coming to America and eventually founding Give Kids The World.

After the museum, we went to the Castle of Miracles, so that Carla could give them her star. The star fairy will place it on the ceiling, where it will remain until the end of time...

Here she is going through the whole process...

Look at all those stars....Carla's will be up there now too!

Then we went over to the wishing tree and Carla got her wishing pillow...

Cody got one too...

After playing in the Castle of Miracles for a while we went back to the villa and saw the albino squirrel.

Then we went and got banana splits at the Ice Cream Palace.

Carla's First Banana Split ever.... then

We went to the Amberville Train Station to play some games.

We saw Carla's imagination grow so much while on this trip. It was neat to watch her play and imagine.

While we were at the Amberville Station, the rain started....

Later that night was the Princess and Pirates party... here she is after getting her makeup done...

with her princess certificate.

Later the Sea World characters came....

With Shamu...

And Mayor Clayton...

Shamu got down and danced with the kids.

At the end of the night, Carla was BEAT!!!! We had SUCH AN AMAZING VACATION! I am so sad to leave....

Love, Jen

Carla's Make A Wish, Day 5

2011-10-09T07:14:00.001-06:00

Thursday was yet another BIG day.

We went to Universal Studios to check out what they had to offer.

We knew Dr. Seuss land would be neat, so went there first.

Why Cody, what a large hat you have.... We went on a Cat in the Hat ride twice, the Star Belly Sneetch train twice and also wandered around a bit and saw

this....

And then of course...this (Harry Potter land). Universal had lots of roller coasters and was pretty geared for larger kids....so we started making our way out of there.

Here's Carla, being pink.

On the way out of Harry Potter land we stopped for a couple photos :)

After Universal, we went back to the Village for a nap and lunch. Later that night we went to the Medieval Times restaurant. We really had no idea what it was all about, but thought the building was cool, so made reservations. It was pretty neat! And Carla had a fabulous time! It was like an interactive dinner theater with horses, knights, a princess, and a king, fighting to get their lost prince back from his evil captors.

Carla, with her crown...

This one suits her much better.

Kisses

The family, waiting for our food. We all got tomato basel soup, garlic toast, a honkin portion of a chicken, one pork rib, half a potato and an apple turn over. All to be eaten with your hands....they actually do a great job of cooking food that is easy to eat with your hands and CARLA LOVED IT!

Our Knight threw a flower right to Carla. She was overjoyed!

Cody and Carla with her flower. Tomorrow is our final day in Florida, as we have to leave early Saturday morning. Our plan it so stay at Give Kids the World and really take in what they have to offer. There is a Princess and Pirate party in the evening and Carla is looking forward to that.

Love, Jen

Carla's Make A Wish, Day 4

2011-10-07T12:13:00.001-06:00

Wednesday was another BIG DAY! It started out with a horse ride at Give Kids the World....

At first Carla was very reluctant to try horse back riding, but after she saw a couple of kids doing it, she thought she would try it out. And guess what....she LOVED it. That, my friends, is why you must continue to try things...even if they seem terrifying.

For all of her efforts, they gave her a certificate, and a hat. She promptly took off the hat and...

had me wear it. Yes, I'm a Montanan, and this is probably the first picture of me in a cowboy hat ;) After horse rides we went to Sea World!

Here is my cute family by a waterfall at Sea World. We promptly made our way over to the Shamu show....and because Carla was with Make A Wish, they put us right up front. To give you an idea of how wet we got...the first 15 rows are considered the "Splash Zone" We were in row #1. Yes we were SOAKED afterwards! But luckily, we were in Florida, so dried off pretty quickly.

Here's a picture of one of the whales ....

Here is a picture of Carla, after getting drenched, the first time. She LOVED IT, as did the rest of the family. Cody was grinning ear to ear!

After watching the show, we went over to feed the dolphins!

And pet the dolphins.... :)

After feeding and petting the dolphins, we fed the sting rays....

Saw some flamingos, ate and eventually took off out of there. We were going to go to the ocean, BUT we found out the electric parade at Disney was only on Monday and Wednesday this week. So, since it was Wednesday, we figured we had better go back and see it. I remember being super impressed by it when I was a kid, and when Cody was little, so thought Carla would get a kick out of it.

Taking a rest after Sea World.

A couple hours later, after washing all the whale water off, we were on our way back to the Magic Kingdom! Carla was over joyed! The Magic Kingdom was her favorite!

Picture op!

We got the best place to see the parade. It was right by the castle picture place, just on the other side of the bridge, so no one could stand right in front of us! I took about a million pictures, but here are just a few. :)

Wednesday was a hit! Thursday is Universal Studios and the Medievil Castle dinner and show. We are having the most amazing time :)

Love, Jen

Carla's Make A Wish, Day 3

2011-10-06T15:10:00.000-06:00

On Tuesday, we woke up early to meet whichever Nickelodeon character would be visiting the village. Jimmy Neutron it was, so we got to meet Jimmy.

Here we are with Jimmy :)

After meeting Jimmy, we went to the House of Hearts, to see about getting tickets to the Mid Evil Times dinner and theater. It is a 48 hour wait, so we will go on Thursday. After breakfast and pictures, Bobby, Carla and I went off to the Animal Kingdom to check things out. Cody stayed at the villa to sleep, as he was feeling a little under the weather. Once we got to the Animal Kingdom, we realized that the camera battery had died. Must have taken too many pictures yesterday...and left the camera on way too many times. Oh well. We didn't stay long at the Animal Kingdom...as it was not our bag baby. We ventured back to the car, and Carla crashed out. After returning to the villa we found Cody feeling a bit better, and we all went swimming together. After swimming, we took showers and made our way back to Disney World. This time we tried our luck with the Disney Hollywood Studios. Very cool. And, because we were there in the evening, it was so much more comfortable to wander around in!

Here, Cody and Carla pose, close to the entrance of Hollywood Studios.

The lady at the gate told us that the Toy Story ride would be a good one, so we made our way to Pixar Studios to check it out.

We waited a VERY SHORT period of time and then went on one of the coolest rides! It was a 3D shooting game...very cool indeed. After the Toy Story ride we went on a Backlot ride/tour... also very cool.

Here we are on the Backlot train...

The water tower....

Check out this cool backlot sequence of photos...

While all that was going on the train was shaking from side to side, so you got the full effect.

Herby, the love bug.

Bobby, Carla and I with a costume from Alice in Wonderland.

Boo's door.

Check out the background...

They build sets to look like cities....

More family shots...

Why Cody, what a large hat you have....

At the end of the night, we experienced what is called "Fantasmic" which was, as the name suggests, a fantastic show which included Mickey, all the other characters, a light show, water show, firework display and a just plain awesome presentation of everything that is Disney. Disney World really is the bomb. It doesn't seem as though they have left any thought, unthunk. The park is immaculate, the people who work there amazing and everything they do is just out of this world! We continue to be impressed.

Tomorrow, we are going to Sea World, and maybe the ocean...we'll see.

Love, Jen

Carla's Make A Wish, Day 2

2011-10-06T06:47:00.000-06:00

We woke up bright and early Monday morning....

or at least I did! Carla was so tuckered out from Sunday's traveling and then Give Kids the World adventures, plus the time change...

but after talking about getting up so that we could see Mickey, Minnie and the Princesses....

Carla was finally ready for her day!

Cody was busy texting his Sydney...

We were on our way to breakfast

and ate at the "Gingerbread House" (check out all those toys).

After breakfast, we went to meet Mickey and Minnie...but all we saw was Pluto, so we hung out with him for a while and then realized...

Mickey and Minnie were in the theater!!!

They were so sweet to Carla, and even signed her Mickey doll! We can't say enough good things about how our family has been treated!

After meeting the mice, we were off to The Magic Kingdom, where Carla had a date with the Princesses!

Hey, don't tell me you wouldn't get distracted by a huge pile of cookies!

On our way back to our villa, look at all the wonder and happiness in Carla's eyes...

My little Wright Family...

And we are here!

Cody helped Carla sign her name at the Ferry entrance and

after a short boat ride, and a few hoops, we were in like flynn!

Carla got to visit with the Princesses Belle, Cinderella and Sleeping Beauty. They were so kind and sweet to her! And she was very animated and talkative! (No! Not Carla!)

After the Princesses, we happened across a very cool Disney show at the castle. It was SO COOL that I actually cried a little bit!

Carla, however, did NOT cry! She had an amazing time! (And Bobby got it ALL on video!)

Cinderella's castle, from another angle.

After the show, we had some lunch and then we were off to the "It's a Small World" ride. This is where we experienced the true Make a Wish, Disney hospitality...as they saw us and escorted us to the front of the line. WHAT?! Holy Cow, they are amazing!

Before getting escorted (maybe they just wanted this crazy lady out of the line)

Carla, on her first "ride". It's a Small World was very cool.

After the Small World ride, we went across the road for the Peter Pan ride. Which, was SUPER COOL as well.

We have a picture of Cody, when he was 3, in this same spot.

Here he is 15 years later :)

Picture op....on our way to meet Rapunzel....

Carla enjoyed visiting with Rapunzel and then...

We went over to meet Tianna....

And then she went to meet Ariel, and Eric....

Ariel kissed her on the cheek.

And then we went to meet Tinkerbell and her friend (I can't remember his name.)

and Finally.....

Jasmine and Aladdin! They both kissed her on the cheek too!

After the Princesses, we went for a boat ride, and Carla got to drive!

And just before leaving, Carla got an umbrella with her name on it.

It was a magical day in Disney World and then we came back to the GKTW village and had a Halloween party! Tomorrow we will try out the Animal Kingdom....

Love, Jen

Carla's Make A Wish, Day 1

2011-10-05T20:56:00.003-06:00

Carla's Make A Wish adventure has been nothing short of absolutely AMAZING! We were happy to have no traveling issues and once we made it to Florida everything went smoothly as well. So, all that fretting I did was for not.

We arrived in Orlando Sunday afternoon at 3:24 p.m. There was a lady from Give Kids the World at the airport, who greeted us and took us first to get our bags and then to pick up our rental car. We got to pick out whichever car we wanted from a row of cars. We chose the one with a spoiler... the GKTW lady gave us a car seat to use and directions. After loading up the car, we were off! Shortly we arrived at the magical Give Kids The World Village. Talk about amazing. Everything you could ever imagine, they thought of it. The whole village is just absolutely breathtakingly awesome in every way.

We dumped off our bags and went to explore the village and get a bite to eat. After a dinner of roasted chicken, mac & cheese, corn and corn bread, Carla and Bobby ordered ice cream cones and Cody went to take a shower. Carla, Bobby and I checked out the pool and wandered around a little bit. I had orientation at 7:45 and Bobby and Carla went to play "The World's Largest Candy Land game". With live characters! The game was followed by a street fair, where Carla won both a back scratcher and a balloon thing that you hit with your fist... Silly Bobby forgot the camera, but hasn't forgotten a thing since (so he's forgiven).

After meds and a vest treatment, we all crashed out around 10:00 (8:00 our time) with the visions of Disney dancing in our heads....more on that tomorrow....

Love, Jen

After JUST arriving in our villa.

Our home away from home.

Looking down a street at Give Kids the World

The Castle of Miracles Carousel

In front of a giant mushroom

waiting for dinner

Check out the cool artwork!

We are silly.

In front of a giant stack of cookies!

Look Mom, I'm pink! Sea level is Carla's friend.

My fingers aren't purple!

Ol' Elmer the very sleepy tree....he snores when you walk by him.

Carla outside of the pool area.

The coolest pool, water play area of all time.

11 hours....

2011-10-01T19:37:00.001-06:00

In 11 hours we will take flight on a fun filled Make A Wish adventure! I think everything has been pulled together. The house is clean and I will be putting Carla and myself to bed shortly. Today is Homecoming for the Cascade Badgers and so earlier tonight we went to the parade. Cody played the drums really well and the parade was the best I've seen in years. Afterwards, we went to the town's pancake supper, to support our volunteer fire department. There were so many people there, and honestly, I felt somewhat reluctant to have Carla around all the people and germs. But, here's to hoping she stays healthy. Couldn't be any worse than taking her on an airplane. And, she was so excited to see family and tell them all how excited she is to go to Disney.

Something kind of sad.... Carla says "It will be kind of like going to the hospital." Unfortunately, the only trips she has ever been on, have been to the hospital. So, of course, she doesn't get that this is going to be NOTHING like that! Although, I am happy that she doesn't think of the hospital in a negative light. She thinks it's kind of fun. That goes to show you how great her children's hospital is. I cannot say enough about the staff at Primary Children's Medical Center, and how they make our child feel like she is on some kind of vacation when she goes there. Pretty amazing.

Anyway, tonight Bobby is at work and Cody is going to the Homecoming dance after the football game....SO...they are going to be tired boys tomorrow. Luckily, they will have a lot of time to sleep on the planes tomorrow. I will try to go to bed with Carla here in about 28 minutes. ;)

My love to all! Take Care and God Bless! Please pray that Carla stays super healthy on and after this trip.

Thank you Make A Wish for the exciting adventure that we are about to embark upon!!!! :)

Love, Jen

The count down continues....

2011-09-26T12:45:00.002-06:00

6 days till Disney! We are getting super excited and about our Make a Wish trip! I packed most of our bag and am now just going to concentrate on getting the house in order and thinking about what we are going to do while we are in Florida. I think I'm going to call the Give Kids the World people and see if they can kind of direct us as to what we should do when. I think the more we have a plan, the more we can get done.

As far as what's going on around here, just random stuff. We had a garage sale the other week and got rid of a bunch of stuff that we just don't need or use anymore. It still seems like there is always so much more work that needs to be done...like my office is a total wreck. But, it will all get done with time.

Yesterday we had a nice lunch with Bobby's folks and brother and then my Dad, Grandma Morgan and brother came for a visit. It was so nice to spend the day with family.

Here are a few cute pictures from the last week or so...I know I haven't been the best about posting lately...

Carla, eating her chicken canton while pretending to be at the Jade Garden in Helena.

Carla, visiting us in the garage, as we were getting it all put together for the sale.

The other day, Daddy was teaching Carla how to play her guitar. The guitar was donated to Carla from Rod's Music in Great Falls, and a bunch of people who participated in the fund raiser signed it for her. Pretty cool.

Carla, laying in a laundry basket, being adorable.

I love this smile.

Cody, dressed as an 80s rocker for Homecoming week. :) So cute.

11 Days Until Disney!!!

2011-09-21T17:39:00.003-06:00

That's right, in 11 days we will be heading out in the very wee hours of the morning, so that we can start our Make-A-Wish adventure! We will be staying at the Give Kids the World Village, which is an amazing facility designed specifically for Make-A-Wish kids. Disney and Nickelodeon characters visit the village for photo ops, there is horse back riding, a pool, ice cream at any hour, a fishing pond, nature trail, basketball court, Castle of Miracles and more! We will have tickets to the four Disney World parks, Sea World and Universal Studios. I have no idea how one week is going to be enough time for all of that, but I am certain that we are going to have an amazing time! Carla is super stoked and every day we cross off one more day on our count down to Disney calendar. This is going to be totally awesome and we are all pretty excited. :)

Love, Jen

Antibodies

2011-09-15T10:33:00.001-06:00

We heard from Dr. Everitt in Salt Lake the other day. She said that Carla's antibodies have come down to about 50%. Much better than the 94% she sat at in May and June! This is encouraging news. Before they can change her antibody status on the transplant list though, they have to do another test. Luckily, she can order those tests to be done here! So, that means we don't have to drive all the way back to SLC for a blood draw. She wants us to do that within the next 4 to 6 weeks. So, I will set something up with our cardiologist's office and figure out if Nurse Tammy will draw the blood or if we will have to go to the hospital here for that. Anyway, the fact that they are coming down is good.

Dr. Everitt also explained a little bit about lymphocytes to us, and that the last time Carla's were in the "normal range" was back in June of 2009. Funny, that was right before her Fontan. She explained that the lymphocytes should be in the 4000 range. Wikipedia says: "A lymphocyte is a type of agranular white blood cell in the vertebrate immune system." Basically, if the lymphocytes are low, it affects the immune system. When Carla was sick in March, her lymphocytes were at 400!!! Now they are at 1200, which is a good improvement, but still not within normal range.

Dr. Everitt explained that the Fontan works very well for some kids, but not so well for others. Carla is one of the lucky kids it doesn't work so well with. This is part of what makes me feel like going forward with transplant is a good decision. I am just hoping we don't get forced into a scary position before we get a new heart. And, that we can make it through until next summer before we have to move forward with transplant. I really want to finish out Cody's Senior year before all this crap hits the fan. But, the good news is that now that we understand a little bit about the fact that she is immunodeficient, we can be SUPER CAREFUL with her this winter and try really hard to keep her from getting sick. Sometimes you look at Carla, and she looks so great, that you don't think there is any problem letting her go to preschool or letting her go to Walmart, or even letting her go to Cody's basketball games. I think we need to be a lot more careful this winter and just hope and pray that she doesn't pick up anything that will put her back in the hospital.

That's all I have for now, must get ready for my "Results" class. Yes, I am now working out with other human beings! First time ever and I think it is pretty neat. Bobby and I have always worked out at home, so working out with other people is different. We started "Body for Life" on Monday and we are committed to getting ourselves back in shape. We are having a good time with it and enjoying supporting each other. And, I am happy to say that last night was the first night in a REALLY LONG TIME that I actually slept through the night! I usually wake up and can't sleep for hours at a time in the night, so it was nice to sleep through the night. I think it probably has a lot to do with physical exhaustion. If working out helps me sleep well, I am all for it! Anyway, time to get!

Love, Jen

p.s. No idea why I have different background color on half of my post....

Shots!

2011-09-12T22:26:00.000-06:00

We took Carla to the doctor today and she was given her four year old vaccines, plus the pneumonia and meningitis vaccines. Four shots all together, and she was SO BRAVE. She is so proud of herself when she is super brave. After the shots we had to drive across town to the Cardiologist's office so that she could get a finger poke to check her coumadin levels. Most children would cry and have had enough but Carla was like "I get to go see Tammy!" and started clapping in the back seat. Wow. Her amazing grace through the trials of being born with half a heart is something that continues leave me in a state of awe . Sure do love that Sweet Toot!

Love, Jen

And we're home!

2011-09-09T11:48:00.000-06:00

Well, that was a fast trip! Drove to Salt Lake Wednesday, checked in to our room at the University Guest House and then went to the Red Lobster for dinner. YUM! After dinner we gave Carla her meds, did her vest treatment and then all went to bed. I barely slept and then got up early Thursday morning to get ready for the appointment. Of course, being in the same room, Carla ended up getting up early and played in the tub a long time, while rocking out to our favorite i-tunes. After getting ready we went down for our Guest House complimentary breakfast. And, to our surprise, they have added HOT food to their complimentary breakfast! So, along with the usual cold food they offered (which we have always thought was awesome!), we also had the choice of sausage links, egg and cheese omelets, plain scrambled egg omelets, or french toast! We enjoyed our breakfast, packed up our room and were on the way to the hospital by 9:15.

After checking in with Cardiology we walked over to the lab area and put our orders in. Carla played in the kitchen they have set up there and then we were called. They did a blood draw out of the arm and she didn't even shed a single tear! Afterwards they gave her the choice of her toy and of course she chose play dough. She always chooses play dough. Upon returning to Cardiology they took Carla's height and weight and took us to a very comfortable conference room, where a nurse took Carla's vitals. She ended up weighing 34 pounds, she is 39 inches tall and her oxygen level was bouncing between 78 and 79, on no oxygen. We waited for quite a long while and were super happy to have a couch and comfy seats!

The transplant nurses, and counselors who checked in with us were so amazed by how well Carla looked. Of course, they saw her at her worst. They were the ones sitting with us during those fateful days when we thought transplant was the only option and that option was now or never. They saw our tears...they helped us make the hardest choices of our lives, and they answered our questions and comforted us the best they could. We are so grateful to this transplant team at Salt Lake. We could not have been placed in a better place during those most horrendous months.

During this visit they all played with Carla. And, when she told them there was a dragon trying to eat her smurfs, the doctors and nurses all played along! When Dr. Everitt came in the room she cracked the door open, pretended to be holding out the dragon and quickly entered the room and closed the dragon out. Carla laughed and laughed. It was super cute.

We talked to Dr. Everitt and she agreed to let us start doing the three month blood work in Great Falls. So, barring a heart transplant, we don't have to go back to Salt Lake for one year! Dr. Everitt will be in touch with Dr. Ruggerie, in Great Falls, and she will let him know what labs, etc. she wants him to draw. They will give us a call next week about how the antibody labs turned out and we will have a better idea of what Carla's body is doing. Dr. Everitt did tell us that Carla's immune system has recovered a bit from when we were there in March and April, but it is still down a bit (level is at 1200 and should be at 2000). She recommended certain shots to help prevent her from getting pneumonia and meningitis, as well as getting the flu shot and the regular 4 year old vaccines.

As far as Carla goes, I wanted to let you all know that she is our little entertainer! Holy cow! Wherever we go, she is a star. At Red Lobster, she charmed our waiter. At the Guest House she charmed the old men eating breakfast next to us, and at the Hospital she charmed all the doctors and nurses. Dr. Ruggerie said something to us at our last visit and he was so right. He said: "It must be a delight living with Carla. She is such a character." Why yes, yes it is. She is quite a delight! And, we are so blessed :)

Enough of my rambling though....here are a couple of pictures from our adventure. :)

Love, Jen

Shaking our Tootie, before we left Wednesday morning.

Charming at the Red Lobster.

Carla, getting her shake on and Bobby, being cute.

Playing her DSi, yesterday morning before we left for breakfast.

Humoring me.

Waiting in our cozy room at the hospital.

A couple of cuties.

Awh, loving on each other.

On our way back to Salt Lake....

2011-09-06T15:55:00.000-06:00

Tomorrow morning we leave for Carla's check up with the transplant team in Salt Lake. It has been a somewhat difficult day, hard to get myself going. I know everything is fine and everything will be fine, but the idea of going back to Salt Lake makes me feel like curling into the fetal position and just laying there for an extended period of time. My brain is scattered and getting motivated has been difficult. Carla, on the other hand, has been a very good girl all day. We are shooting to leave by 8 tomorrow morning, which will probably put us leaving around 9. We should make it to SLC just in time for 5:00 traffic! We will check in to our room, have some dinner and then try to find something fun to do. Carla's appointment is at 10 Thursday morning, so we have to be there by 9:30 for the blood work and then we will most likely do an echo, x-ray and finally talk to the doctors. We will most likely be on the road by noon and then home Thursday night by 10 at the latest. I will keep you posted on what the docs say!

Love, Jen

Um, more pictures...

2011-09-02T09:25:00.000-06:00

Bobby and Carla, running through the sprinklers

They were having a good time.

Here she is getting into it a little more.

The other day Sydney dressed Carla in a bunch of Cody's stuff...she came downstairs and said:

I'm a superhero!

Visiting with Katy the other week.

They are cute together.

Cody's 1st day of his Senior year!

Ok now, pretend you are leaving! I have this same shot when he was in 6th grade...

A bunch of pictures

2011-09-02T09:09:00.000-06:00

I haven't been the best this month about getting pictures on the blog. SO, here are a bunch of pictures from the month of August!

I turned 36 on August 3rd, here are the pics from my birthday celebration!I

Uncle Andy and Carla, hugging.

Andy, having a hard time keeping his eyes open :)

Ok, everybody close your eyes!

He gets this inability to keep his eyes open from our Dad :)

Dad & Andy, keeping their eyes REALLY open and Carla and I thinking this is hilarious!

Rocking with Great Grandma Morgan

Dad & Carla, swimming at the Broadwater.

Grandma, Me, and Andy.

More swimming pics.

Grandma Sue and Great Aunt Donna, with Carla.

Dad & Uncle Norm, visiting before we took off on the Gates of the Mountains boat trip

Waiting for the boat.

The boat is coming in, we are promptly in line!

My Dad :)

Carla, being beautiful.

Carla, getting her teeth cleaned.

Getting ready to learn how to properly brush.

Look at those pearly whites! Bobby kept telling her that her teeth were blinding him and that he needed sunglasses. It was super cute.

Pictures from the Gates of the Mountains

2011-08-29T16:40:00.001-06:00

Dad, Sue and Andy.

Getting ready to leave the dock.

Aunt Donna.

Carla, sleeping on Uncle Norm's lap.

Carla, Bobby, and I before the boat tour.

Meriwether beach. Until 2007 the boat used to be able to dock here and everyone could get out, and picnic.

There are some pictographs on the rock here that were carbon dated back to 1200 years ago. They believe they were created by an Indian Shaw-man.

Donna, Grandma, Uncle Norm with a sleeping Carla.

It was so neat that Uncle Norm and Aunt Donna FINALLY got to visit Carla while she is well. They live in Vegas and have always made it up to Salt Lake for her surgeries and complications but this visit is the first where they have seen her well! Yay! We will be visiting them tomorrow as well. :)

Like Chickens...

2011-08-28T22:34:00.000-06:00

I feel like we have been running around like chickens with our heads cut off! Wednesday Bobby played up in Whitefish with a new bad called The Alleged. They play a bunch of dancy fun songs and we had a blast. It was like a little mini vacation from our life and it was great. We got home Thursday, just in time for Bobby to go to work and I visited with Bobby's Mom for a while and had a nice time telling her all about the show. Friday was the rehearsal dinner with our friends Chad and Melissa, and we had a long WONDERFUL dinner at Dantes. Carla had a blast and people loved her. She is such a little character. Yesterday was the wedding (and Bobby was not only performing the ceremony, but also doing the DJing and then Metal Steel performed). We got up, got ready and then I took Carla to Helena, ran to Penneys and then Walmart for some last minute items and then rushed back home to get ready and then off to the wedding. It was such a great time and the ceremony was lovely. Bobby really outdid himself. But of course, he is Bobby, so what are you going to expect. Today we met my Dad, Sue, Carla, Uncle Norm, Aunt Donna, Andy and Grandma Morgan at the Gates of the Mountains. We went on the 2 hour boat tour and afterwards drove to the Missouri River Inn and had an amazing dinner, with the best company! On Tuesday I am taking Carla up to Helena to have another family dinner and then on Wednesday she gets her teeth cleaned. Cody's 1st day of School is Tuesday, Bobby also has an eye appointment Tuesday and Thursday Carla gets her hair cut again. The week after that, we will be driving to Salt Lake on Wednesday for a Thursday morning Cardio appointment. Busy, busy. I am ready for everything to slow down a bit, but it's also kind of fun to be so busy. Although, our house is a wreck, so we need to work on our yard and laundry. I also need to work on taking my camera out of it's bag. I have only taken about 4 pictures all month! Bad Jen! I couldn't believe I forgot it on the Gates of the Mountains Boat Tour today! What a nerd! Luckily, my Uncle Norm has an iphone, so he will be e-mailing me the pictures I took today ;) Can't wait to see them!

Anyway, I'm tired and have to go to bed. Here's to an amazing week!

Love and blessings, Jen

A couple of pics

2011-08-21T21:56:00.000-06:00

We don't have the proofs yet from Cody's Senior pictures, taken Monday. But, these two popped up on the Timeless Photography facebook page. :) What a handsome young man we have...

Things are fine

2011-08-20T16:38:00.000-06:00

Just a quick update to let everyone know that things are just fine. Last Sunday I took Carla to Helena and we went swimming with My Dad, Sue, Grandma Morgan and Andy. Afterwards I stopped by and visited with my friend Katy, and got to see her new house. I LOVED it! Very warm and inviting. Monday we had Cody's Senior pictures, so Bobby's folks watched Carla for me while I went with Cody to his photo shoot. It was very cool and I am looking forward to checking out the proofs when they are available. Tuesday Metal Steel opened up for the Bullet Boys at the 406 Club in Great Falls, so I went to that and had a very enjoyable time. Wednesday, I had a girls night with a couple of my newest friends and THAT was very enjoyable as well. Thursday and Friday were pretty low key and today Carla and I went for a stroll down to the post office while Bobby and Cody cleaned house (yes, I'm going to keep them). I had told Carla that she could ride her Princess Jeep to the post office today and she did not forget. So, I walked and she drove. Her driving is somewhat terrifying, but we are working on it ;) It's probably about a mile, maybe a little more to go there and back and a couple of blocks before we got home she decided that she didn't want to drive anymore, so I drove the princess jeep and looked very silly, I am sure. After she got tired of walking she rode on my knee as I drove her jeep. Now I know how tall people feel when they get into my car....I was feeling like I had a whole lot of knees! Hee hee.

Oh, I almost forgot, Tuesday we had a cardio visit and things seem fine. We will be going to Salt Lake in early September, so we didn't do an echo, just a check up. Bobby and I visited with the doctor for a long while and Carla ended up falling asleep. Her oxygen level was at 80% with no oxygen. She weighed 35.4 pounds and was 3 feet 2 inches tall. She is getting very big. I have been working on trying to help her be more independent, but she is very resistant to independent. Hopefully she will get it soon, because in one year she will be going to Kindergarten! Holy Cow! Dr. R is hoping that we can keep her home for the winter, as we would all like to make it through the winter without any emergency trips to Salt Lake. I feel good about keeping her out of preschool, but also don't want her to get behind....but I think her health is more important at this point. I just hope that when next year rolls around she will be well enough for Kindergarten. We'll have to pray about that!

Love, Jen