10/22/14

Home!

We are back home and everything is good!  Carla spent last Monday, the 13th, in the hospital after her vocal cord procedure and we were finally discharged Tuesday around 1:30 p.m. We went back to Bev's house and Carla had another fever :(  We gave her some Tylenol and laid low for the evening.  Wednesday we also laid low but did take Carla to Applebee's before we returned our rental car and flew home.  Thursday we went to the pediatrician and were thankfully prescribed an antibiotic. Fast forward almost a week and Carla is doing a lot better.  She hasn't had any fevers since the 14th and her cough is so much better as well. She had lost her appetite for a while (and had actually lost 2 pounds) but now that her cough is a lot better her appetite has come back strong.  This past weekend Carla was able to attend Morgan's birthday party in Helena and we spent the night with my bestie (Morgan's Mommy).  We had to wake up early and come home Sunday morning, but it was still nice to have some time to visit with friends.  Carla is happily back to school this week.  She loves school and it warms my heart to see how social and comfortable she is.  Here are some pictures from the past week or so.

Tuesday morning, getting an echo. 
Waiting for the orders to be discharged on Tuesday.

Lunch at Applebees in Renton


At the airport...

Sleeping in Thursday morning.  Mario was so happy to have his family back!

Reading (quietly to herself) Thursday afternoon at the pediatrician's office. What a big girl! 

Thursday evening, starting to feel better and getting her appetite back. 

Morgan's Birthday Party!  

Making funny faces and elk antlers.  

Carla and Morgie, being cute together :)
We are blessed.

Love, Jen

10/21/14

Hospital Visit

We arrived at Seattle Children's hospital for Carla's vocal cord procedure yesterday at 1:15 p.m. Unfortunately, they were running very behind, so they finally started the procedure at 4:15, and finished by 4:45. Everything went well and they took Carla to the recovery room while a room was being prepared. Cardiology wanted her to spend the night, so we anticipated settling in. A little over an hour later they let us go back to the recovery area. Unfortunately, no one had written orders for Carla to spend the night, so we waited until after 7:15  to be released from the recovery room! When we got to our room I asked our nurse about giving Carla her at home meds, because she takes a brand of cyclosporine that Children's doesn't carry. After several calls to pharmacy, and the charge nurse actually having to take Carla's pills to pharmacy, she was able to take her meds (only 20 minutes late). We had a phenomenal nurse last night who pretty much made up for everything with her extra effort. It really is awesome how one person can make such a big difference.

Carla ended up with a fever of 102  last night and with a fever came a very high heart rate and lower oxygen levels.  She ended up coughing and puking up a bunch of phlegm, which was helpful to her oxygen levels.  I noticed that her fever had finally broken around 4:00 a.m.  I was so thankful when I saw her heart rate at 113, instead of 152. Today she seems to be doing better, but she does still have a cough. The ENT Resident said the cardiology may want to observe her again today, but we haven't seen the team yet so don't know. I just really hope they let us go.  EKG was just here and the echo lady is presently here, so I'm pretty sure it will all kind of stem off of whether or not the echo and EKG still look good. If they look like something is wrong I'm sure they will keep us, but I don't foresee that happening.

Here are some pictures from the trip so far. 
And we're off!


Getting ready for takeoff! 
Grandma Bev gave Carla this vampire sucker.  :)
Before the procedure Monday afternoon, about 9 hours after her last little bit of food.  
The echo, Tuesday morning. 
Waiting to see the doctors Tuesday morning.  









10/8/14

Reflecting

It is hard to believe that two years ago at this time we were living in Seattle, waiting for a heart transplant and wondering if it would ever come.  Carla was listed at Primary Children's in March of 2010, but we had been waiting in Seattle since November of 2011.  Her plastic bronchitis was only mildly horrific in Seattle and being a block from the Children's Hospital made life a little more bearable.  Super high antibodies from having three previous heart surgeries made finding a perfect match very difficult.  So much so that when the hospital called me around 8:30 p.m., on November 14, 2012, I was in disbelief of what they were saying to me.  We had just finished our prayers and had closed our eyes to rest. That day I had been anguishing over another heart child, Kylie.  She was in Salt Lake, waiting for her perfect heart as well.  Kylie was very sick and I had been crying and praying that she would get her gift of life soon.  Unfortunately, Kylie's perfect heart never came. But on this night, after praying so hard for Kylie, we got "the call".  I hung up the phone, got out of bed and told Bobby what was going on.  Carla was crying and we needed to comfort her, call our families and get to the hospital.  We, being experienced hospital goers, did not drop everything and run out the door.  We called our families, let Carla talk to everyone and calm down with some Wii. As Carla calmed down, we packed our bags, and made sure the apartment was cleaned up enough for company (because we knew everyone would be on their way). We arrived at the hospital about an hour after the call, and were settled in to a room for the night. Surgery was scheduled for the next morning...  It all seemed so unreal, and I wasn't going to let myself think it was real until we knew for sure. There are times when people get the call and then later find out it was a false alarm because the donor organ isn't in good shape.  You never know for sure until the surgeon says everything is a go. For Carla it was a go. Justin's perfect heart was somehow Carla's perfect match, and it fit into her chest cavity like it was meant to be there. A lot of the time a donor organ is either too big or too small for the chest cavity. 

I cannot even begin to express the thankfulness we feel toward's Justin's family. I can only imagine what they were going through. No parent should have to make the decision to donate their child's organs, or not. And their decision has changed our life so much. 

Since receiving her gift of life, Carla has grown about a foot! She still has issues (as every transplant patient does) but her quality of life is so much better than we could have ever expected.  Much better than it was with her half a heart. Her fingers, toes and lips are pink, instead of purple.  And, she can enjoy normal activities, like other children.  I am thankful that she was so young through all of her surgeries because I don't think she remembers a lot about being so sick. She does cry and gets upset if she sees pictures of herself after surgery. We have appointments, medicines, blood draws, vocal cord procedures, infections and vitals. But, that is just part of our "new normal" it has always been her "normal". 

So now, I guess this whole post was reflecting on a child that once was, because Carla's "new normal" is to have good health. Here are a couple of pictures of her living her "new normal". 

Love, Jen
Roller Skating for the first time at her classmate's birthday party. I was a bundle of nerves, but she did alright :)

Being cute with Mario.  She can't get enough of the dog. 

I couldn't get both of them to look at me at the same time.  Carla looks so cute in this one though :)

After dropping Carla off at school yesterday Mario was waiting in  her seat when I came back to the car.

Yesterday morning, after taking her meds.  She is such a little sweetheart. 


This came home with Carla yesterday.  Her 1st grade school photo :)  Such a little darling !  

9/25/14

It's time for an update...

I keep thinking that I need to update the blog, but have had some writers block because I don't have a lot to report.  Bobby has been super busy with school and work and Carla has been busy at school as well.  I have been getting more "alone time" than I think I've had in, well, probably my whole life.  I can't say that it sucks.  The house is clean and quiet and the dog is even being low maintenance.  So, what more could a girl ask for?

We have been super proud of Carla, because she has been doing her math homework diligently and has received 100s on all  three of her spelling tests.  She is growing up so much, and I just can't believe what a big, sweet, thoughtful, little drama queen she is.  We are working on reigning in the drama :)  I find it a bit hilarious that she could be a drama queen, because Bobby and I are so laid back. But, she can get her freak out on, and all it takes is for her to convince herself that she has something to worry about. I'm hoping that our discouragement will help the matter.  Right now her drama is mainly focused on the dog.  The poor dog cannot go outside without his leash, or she is just sure he is going to vanish into thin air. She continually tells me how to care for the dog and not to let him out without his leash. She sometimes doesn't even want him to go for a ride with us in the car, because she is worried that he will jump out of the car and run away as soon as we get to where we are going. The funny thing is that at almost any time of the day, the dog is within 5 feet, if not closer to me.  So, I'm very confident that he is not going to run away.

We got the blood tests from Bobby's doctor visit in August back. It turns out that he has some pretty serious food allergies that he didn't know about.  First of all, he is very allergic to all dairy, bananas, pineapple, broccoli and brewers yeast. The doctor wanted him to stay on his very restricted diet (plus avoid the foods he is allergic to) for another 30 days.  If his symptoms aren't better they may need to do further blood work. The doctor was surprised that it wasn't a gluten or egg allergy, because he has never seen vestibular neuritis caused from a dairy or fruit allergy. But, he also said that it is certainly possible that Bobby could be the first. I am just hoping that Bobby's head issues will be solved by diet. Four years of suffering is enough, if you ask me.

Carla has her open house/parent teacher night tonight.  It should be fun and I am looking forward to letting her show me all around her classroom. Bobby has to work, but his parents are going to join me. It takes a village, right.

Love, Jen  

9/12/14

Doctor updates, etc.

Well, we made it through another week and life is good.  Labor day weekend Carla was sick with a doozy of a cold.  She had battled stubborn fevers up to 103.3 and I was fearful that she was developing pneumonia (I hadn't seen fevers like that since pneumonia). But, Monday she was feeling better and then Tuesday and Wednesday she went to school. Thursday morning she complained of not feeling well again and had a low grade fever. I took her to the pediatrician, who said that Carla's left lung sounded crackly, and prescribed an antibiotic. Carla is doing much better now, and we are thankful that she is on the mend.

Monday, Carla had a cardiologist appointment in Missoula with Dr. Hardy. So, we drove to Helena on Sunday, spent the night with my folks and took the two hour drive to Missoula from there. Dr. Hardy said that her lungs sound clear and was happy with how her echo looked. On the drive home I received an e-mail from Seattle Children's about Carla's drug levels. Last weekend's unbreakable fevers caused me to have to give Carla three doses of Ibuprofen over a period of three days. Ibuprofen is hard on the already compromised kidneys (transplant meds do a number on the kidneys) so we needed to make sure her kidney numbers were still alright and that her med levels were where they wanted them to be. We had labs drawn Wednesday morning and found out by Wednesday evening that her kidney function was alright. But, we had been waiting for the med levels ever since. I was so excited when I got the e-mail that her med levels were where they need to be, because fevers and colds in general tend to throw numbers all out of whack.

I can't believe it is already Friday again and we have made it through yet another week.  Carla is feeling healthy at the moment is adjusting well to life back in school.  Bobby is also adjusting well to life in college. Although, he is super busy with work and school.

Here are a couple of photos from the weeks past.

Love, Jen

Snuggling up Mario after school the other day.  

Carla loves to go for a walk to the park for some play time after school.

Monday, getting her echo...

8/31/14

The First Week of School!!!

It's Sunday, so that means we have made it through the first week of school!!! Bobby started his freshman year at the University of Great Falls on Monday and Carla started her first day of 1st Grade on Tuesday. They are both enjoying school and I am enjoying getting caught up on some of the house chores that just don't ever seem to get done regularly enough. Like, for instance, the weeding.  This summer went from raining and cold through June to ridiculously hot in July and ongoing. (That's my excuse and I'm sticking to it). All that being said, the weeding just didn't get done as it should have. So Tuesday, while Bobby and Carla were at school, I spent about three hours pulling weeds. And it no longer looks like our house is abandoned.

Carla woke up on Friday with a sore throat. In the essence of trying to be "normal" I made her go to school. When Cody was young the rule was basically if you don't have a fever and your not throwing up, you're going to school. So, I sent her to school. And Friday night she ended up with a stubborn fever of 102.5. She was miserable and I felt bad for sending her to school and maybe making her worse. It's just such a difficult line to balance on because I want to treat her "normal" but she is still fragile. And I don't want her missing so much school that she gets behind. But she is so fragile. And when she does get sick, it takes her two or three times longer to get better than a "normal" child. So, she could literally miss a whole week of school from one cold. And she catches everything! All that being said, I'm so thankful for the three day weekend because it gives her a chance to get better :)

Here are some pictures from our adventures.

Bobby, on his first day of school.
(This is a pose I used to make Cody do on the way to his first day of school). 
Here's a throw back from Cody's first day of his Senior year.  

All dressed up and ready for her first day of 1st Grade.

She is such a big girl this year and had lots of fun :)  When I took her to class she settled in quickly before finding one of her friends and going outside to recess.  I was grinning ear to ear all the way back to the car.

My project - Oy.  How embarrassing that we let it get so bad.

And this is why I need to weed more often!  All those weeds were a perfect spider nesting area.  It was so gross.  I got rid of all of all the weeds and then sprayed everything with Roundup.
Hopefully the spiders found a different home to live at. 
 After school Carla came home, changed her clothes and was ready to go to the park.
I spun her right round baby right round, like a record baby, right round, round round.   
Mario, wondering what she is doing. 


Being cute on the walk home. 

Hey look!  NO more weeds!


Thursday morning, in her new outfit from Grandma Sue :)

Friday before school, see, she didn't look sick... but did insist on wearing a long sleeve shirt
because her classroom is cold. 

Friday night :( Battling a fever.
And last of all... I can't believe I forgot to post this one (I blame Facebook for being so easy to use -blogger can be a real pain at times). This is from the beginning of August, after the parade that kicked off the Cascade Rodeo.  She got more candy than she collected for Halloween last year! And she  proceeded to make a circle and get in.  Such a silly girl :)
In her candy nest.

Carla is on her way to feeling better.  We have been battling high fevers and phlegmy pukes, but she is not battling for her life.  We are so thankful that Carla can get sick, and that with sickness doesn't come the fear of her suffocating to death.

Love, Jen


8/22/14

I'm not ready....

Carla woke  up this morning, called me into her room and proclaimed... "I'm not ready for 1st Grade."  She had a bad dream about it, so we snuggled, and talked about it and I'm hoping that we will both be ready within the next 4 days, because school starts on Tuesday!!! Yikes!

Today we will go in, meet with her teacher, the new Principal  of Cascade Elementary and also the person who is in charge of 504 plans (an individualized plan for someone with a disability).  We just want to make sure everyone is on the same page before we start school.  The new Principal also wants to do a formal IEP (Individualized Education Program) for her as well, which I think is great.  Last year Carla missed an average of 12 days per quarter, due to both illness as well as appointments.  We already know she is going to miss a day in  September for her cardio appointment in Missoula, 2 days in October for her voice and probably the better part of a week in December for her heart cath.  Soooo... we need to make sure the school knows about, understands and accommodates for her needs. She also takes medicine that can upset her stomach, as well as damage her kidneys, so she has to drink lots of water and may have urgent bathroom needs.

We went to Whitefish on Wednesday so that Bobby could see a doctor a friend recommended to him. Bobby has had a very hard time for the past four years with a vertigo type experience that happens to him pretty much every day. His memory has also been affected, and it has been extremely difficult.  In the past four years he has had an MRI, seen our family doctor, an ENT, a Naturopathic doctor, an Audiologist, an eye doctor and a Chiropractor.  All of whom have no answers and pretty much tell him it's due to stress. His ear test as well as his MRI showed some pressure in his ears, but other than that nobody had any answers. The ENT had him flushing out his sinuses every day and taking massive amounts of Mucinex for about a month, but that didn't help either. At least the MRI ruled out a brain tumor, but that was about all it was good for. This journey has been extremely frustrating for Bobby and as his wife, for me as well.  It has been incredibly difficult watching him power through being miserable and try to hide it from the world. It has been debilitating and has even changed his personality and caused weight gain.  BUT, on Wednesday we MAY have found an answer!  The doctor not only knew what Bobby was talking about, but actually had the same problem himself!  He thinks it is a food allergy, most likely a gluten intolerance.  Bobby will do a blood test that will take about 3 to 4 weeks to get back.  In the mean time, he is to cut out gluten, eggs, lentils, and dairy.  If it will fix the problem, I'm pretty sure he'd eat nothing but rice cakes for the rest of his life. Hopefully he won't have to though!  After coming home, we opened up the fridge and the cupboards and found that Bobby cannot consume 95% of the food in our house.  And I, as a supporting wife, cannot eat it either. So, food is getting a little tricky around here but it's completely doable.  And for the first time in four years, we have hope that Bobby will get better.

Since our family was going to be in one of the most beautiful places on earth, we decided to stay a night. We went swimming, out to dinner and bowling!  It was a great time :)  Someday we will have to make it back to Glacier for a period of time.  We went rafting about four years ago, but other than that, I haven't explored Glacier since my teen years.  And, I'm pretty sure Bobby never has. (I know, we are bad Montanans).

Here are some pictures from our adventure :)

Swimming in the Hotel pool.  

Getting ready to bowl.

Setting up our lane.  

Her first shot at it.  
Doing a Carla dance.

Photo op!

Bobby, with his mad bowling skills ;)

The other day, being snuggle bugs :)
Love, Jen

8/18/14

This and That...

So, I have to start this post with... What is up with dogs!!! Don't get me wrong, I love our dog, he has been a great addition to the family.  BUT, SERIOUSLY, I don't get why the dog will go outside, eat deer crap and/or anything disgusting he can get to, and then, when he has to throw up where does he go????  Directly to the carpet!   Then, after puking, he wonders why I don't want him licking my face.  Gross!

That being said, life has obviously been pretty "normal" and ordinary around here :)  Ordinary is good, but not a lot of blog fodder.  I've been trying to get little miss Carla back on a school schedule (school starts in 10 days) but it has been difficult.  That girl would stay up all night if you let her, and she is not a morning person.  We've been doing bedtime around 9:00, with lights out being closer to 9:30, because med-time is at 9:00, then brush teeth, read book, say prayers, gather up the dog, etc.  So, I've switched med-time to 8:30 and will eventually move it back to 8:00, with bath-time at 6:30.  Being a planner is easy for me.  Having my non-planner, free spirit, everything goes at a snails pace daughter follow along... not so easy.  But, I'm pretty sure God gave me Carla so that I would learn to be less task oriented.  She helps remind me to enjoy this very moment, because she is so very good at enjoying every moment.

Yesterday we went to the lake with the Kraft family to celebrate Jessica's upcoming birthday.  Carla sat down in the sand and proceeded to bury herself... She eventually had Jeff, Ryder and some little girl we don't know burying her.


She enjoyed herself thoroughly.  And she had sand EVERYWHERE... I think her bath water was actually the dirtiest it has ever been!  She wanted her head buried too, but Uncle Jeff said no.  Thank goodness.

School starts August 25th for Bobby and the 26th for Carla.  September 8th we have a cardio visit in Missoula and then October 13th we have another vocal cord procedure for Carla in Seattle.  The last procedure worked well, but it was only temporary and you can tell that Carla's voice is losing it's strength. So, in October she should be fully really for the more permanent procedure!  I have asked Children's about pushing Carla's 2 year biopsy back to December, so that Bobby will be on winter break, and they said that should not be a problem.  We are hoping for the week of December 15th.  It is a bummer that she will have to miss school, but I don't want to do it closer to Christmas when the hospital is more likely to have a skeleton crew (and the airfare is double or triple the norm).  If we do it closer to the end of the week, she will only miss a couple of days, which will be good.

Well, that's about all I have for now!

Love, Jen




8/1/14

Family fun!

Cody and Shelby arrived Tuesday night and so Wednesday we had a little BBQ and thoroughly enjoyed ourselves.  Bobby took these couple of pictures with his phone. 


Here we have from top left clockwise...Mandy (Tom's GF), Jessica, myself, Jeff, Cody, Shelby and Carla

Cody & Carla's Uncle Tom
 Yesterday we decided to take Carla to the fair.  Cody and Shelby wanted to check it out too.
The kids.

Riding around..

She liked this little train.  

Nachos!

Yum, yum!  She looks SO PINK in this photo.  It is still amazing to me how pink she is now.
 Carla was feeling a little fearful  of heights this year - here she is facing her fears...
Getting strapped in.

Getting ready to jump!
 These two decided to head out....

They are so adorable. 
 I got a bracelet to ride along with Toot, she had been kind of fearful and not having as much fun as we had hoped....  This was way better and helped her to feel  more brave.  We'll have to take a friend with her next year so that it's more fun for her.

Taking me for a ride.

She went on this ride 3 times.  After twice I was feeling ill, so she got on with some other girls. 

Feeling brave. 

Carla found a little boy to go on this ride with.  She liked this ride so much she did it twice :)
We have enjoyed having the kids and I am  looking forward to spending my birthday with them as well as with family.

Feeling Blessed.

Love, Jen