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...


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


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


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


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.  


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


This and That...

Things have been going well and life is good. I can't believe there is only one month left of summer vacation and then Carla will be starting 1st grade and Bobby will be a freshman at the University of Great Falls!  This week Cody got a promotion from teller to banker and was also accepted into The Musician's Institute in LA.  He is thinking of attending beginning in January, but hasn't made any permanent decisions.  I won't lie, it does freak me out a tiny bit to see him go off to LA, but he needs to do whatever in life makes him happy.

Cody and Shelby will be visiting this  upcoming week, so we are really excited about that!  It will be nice to have our whole family under one roof for a couple of days.  It is also fair week, so we will have to find a day to take Carla to the fair!  Last year was the first year that she was healthy enough to attend a fair and she loved it a lot.  So, we are hoping for the same results this year :)

Bobby and I were able to have a five day get away last week, and Bobby's parents watched Carla.  Our friends Chad and Melissa pretty much took Bobby and I on an adult Make a Wish vacation.  It really helped us to feel better and more like our old selves.  It is amazing how wound up a person can get after seven years of chronic stress.  Taking a few days and not having to think about med times, taking care of anyone or that ticker in my mind of things that need to be done was seriously rejuvenating.  A big THANK YOU to our friends, Chad and Melissa, we appreciate it more than you will ever know!

And, in the essence of keeping the fun going, Bobby played a pickup gig with The Alleged band in Great Falls Friday night.  I went out, saw him play and did a little dancing with friends.  There was a time when I hadn't ever missed a single gig of Bobby's (or baseball game of Cody's). Nowadays the only thing I don't miss are doctor appointments.  So, it has been a nice couple of weeks, and I feel happy :)

Bobby and I drinking wine that was bottled in 1988, the year that we met and fell in love :)  

Facetime made being away from our little Nukum a little easier, but 5 days seemed like an eternity.  

Love, Jen


4th of July, Dr. Visits, Family & Fun!

It has been so long since I posted, so I have quite a lot of news!  First of all, the 4th of July was a blast!  We kept it pretty low key, but enjoyed spending time with friends and family.  We all had a great time and Mario didn't even freak out about the fireworks.

Monday Carla had a dentist appointment in Helena, and then we were able to attend a BBQ with my family to celebrate that my Auntie Jeannette and Uncle Bill were visiting from California. We had a terrific time and I just can't say enough how much I absolutely LOVE my family.  We are so incredibly blessed to have such amazing people in our lives.

Tuesday morning we were up early and flew to Seattle via Angel Flight West!  It was amazing to be taken via private plane and we are so grateful that we had the opportunity to do that! Bev picked us up at Boeing Field around noon and we were thankful to be able to visit with her for the evening (and also thankful that we could stay with her and borrow her car).  Carla had appointments set for 8:00, 9:00 and 10:00 Wednesday morning, so we left Bev's around 6:35, anticipating traffic issues.  Luckily enough, traffic was smooth sailing and we arrived at Children's about 15 minutes early!  And, that set the tone for the day!  Carla's echo was done in 20 minutes, we saw Dr. S. Law before 9:00 and were called in to our ENT appointment by 10:03!! Things never run so smoothly at Children's, so I was so incredibly happy!!!

Dr. Law said that Carla's echo looked great, and she was impressed by how well Carla looked in general!   People kept saying: "she doesn't even look like the same child!" After our heart appointments we were off to see the ENT, who was happy with Carla's voice and how well she has taken to the vocal cord injection.  We will call him when her voice starts to change again and make an appointment for the second vocal cord procedure.  (The second procedure will last for several years, so we are excited about that!)

Wednesday, July 9th, was not only a day of appointments, it was also Cody's 21st Birthday!!!  We didn't get to see him,  but it sounds like he had a great day.  We are so incredibly proud Cody and love him as much as any Mom and Dad could ever love their boy.  It's hard to believe our little Cody Bear is 21.  Crazy.

Thursday Carla and I flew back home and then later drove to Helena for dinner with my family to celebrate my Dad's birthday!  After dinner I ran back to Dad and Sue's house to tend to the puppy but Carla got to go for a walk with her Grandparents and Aunt Dianne around Spring Meadow Lake, followed by the Symphony in the park.

I spent time with Mario and also had a chance to get my new phone programmed.  (I had to break down and get a new phone because the camera and flashlight quit working a couple months ago and I was just sick of dealing with it).  My new phone pretty much looks the same, but it works a lot better and I am pleased!

Later in the evening I was able to meet up with one of my best friends from high school for a drink!  We hadn't seen each other in about 20 years and it was so nice to get a chance to visit and catch up!

Today I thought it would be a good day to catch up on the blog :) as well as clean up my messy house and just take it easy!  It's been a long but very fun week!!

Love, Jen

Carla, watching her Daddy and Jeff light a firework. 

She's so excitable!

Cute Toot!

Mr. Mario

Letting me take her picture :)

Selfies with Jess!

Being excited!

She is such an expressive child.


Indulging me again...

Ryder, chillin in Carla's Princess Jeep

Sparklers!  (I promise she didn't burn her feet).  

Sparkler fun

Waiting for the town fireworks. 

Our friend Jessica took this picture.  I thought it was so cool!  Carla doing her sparkler and the town fireworks going off behind her.  We love being in Cascade on the 4th, it is so cool!
I found this picture the other day and I don't think I posted it.   This was taken at the beginning of June, with Carla and Mario. 
I can't believe this little boy is all grown up!  He was such a delightful child :)

Cody and Shelby, it warms my heart to see them looking so happy!  Glad you had a Happy Birthday Cody!

Here I am with my friend Angie from high school.  It was so great to have the opportunity to catch up the other night!