Wednesday, January 1, 2014

January 1,2014

We had a follow up appointment with Robby's Neurologist on Monday.  Things are not looking favorable, as he has been on such a high dose of prednisone for far to long.  We had just finished the taper a week before Christmas and he is spilling protein again just a week later witch means his body is not responding to the suppression and as soon as he stops meds his immune system  attacks again. Prednisone dependent.

So next course of action, back on the pred. and as soon as his body starts to respond starting another medication, Prograf. ( trust me, don't read about it)  this is one of the drugs that is given to suppress the immune system in transplant patients.  The goal is to keep his immune system down and give his body a good long break from the steroids, and hopefully as he goes through puberty  his immune system can get a clue of how it's suppose to work.  we are looking at at least a year on this new medication.

Am I scared? You bet.  Robby was diagnosed with Nephritic Syndrome in 2005, it's been up and down since with the longest remission being 18 months after a 8 week coarse of cytoxen.(also not great reading material).  i cry most every day, in fear and frustration.

Robby is such a great kid.  so kind and wise beyond his years,  we don't talk a lot about the "what ifs" of side affects the medications can cause.  I don't feel like that's something a kid should have to worry about. He said yesterday,  maybe I should have another Priesthood blessing?  The kid amazes me, he has so much faith.

Sunday, August 8, 2010

Happy Birthday Lacey!!!

I want to wish Lacey a happy birthday by giving her a shout out with one of my fabulous blog posts.
The first picture was on the night Lacey and Dewey saw each other for the first time after he got off his mission.
The second picture is of Lacey after she sat on Charlee's hat..

This cute little thing came into my life about 5 years ago. She immediately stole our hearts. We all love her so much..
I wish that I could say that she has never caused me any trouble, but if I did it would be a lie.

I new from the start that she was meant to be a part of our family.
That's why I acted like a crazy syco lady when I thought she might not be ours.

I love how Lacey is always concerned with how everyone is doing.
I love how Lacey takes care of Dewey.
I love how Lacey puts up with all the crap all of us dish out to her.
I love how Lacey tries to tolerate out impromptu nature.

I love you Lacey.

Saturday, July 31, 2010

Sweet 16

Happy Late Birthday Blog.
My Beautiful baby girl is finally 16.
And to all the potential suitors.

This amazing person came into my life July 16th 1994 at around 5:30 in the morning, after being in labor for a little over 24 hours. I thought that since Charley-Anne's birth had been relatively easy the same would be true for this baby. NOT! she was however about three weeks over due, the Dr. was sure I was wrong in my counting because of the fact that I hadn't gained back the weight I had lost at the beginning. Anyhow, when she finally decided to join us you can only imagine the Doctors surprise to see the size of this baby girl. 9lbs and all I can say about that is OUCH!

She definitely left a big impact on me, she was my most memorable birth.
She had a whole head full of black hair long enough to put curlers in, she looked like a little Indian.
We were sent home about 5 hrs later and she slept clear through that first night. The next day We had an appointment back at the Dr. to make sure things were OK, and we ended up spending three days in Primary children s Hospital because of a strep virus she got from me. It was so sad to watch them put the IV into her little head.

Jamee, you were so cute, I loved it when you would sing to me while I did your hair.

Jamee has always had an attitude!
Jamee loves her dog digger, In fact we lost Digger in Idaho just after we got him and Jamee and I cried all the way home and then we finally got in touch with the animal shelter in Boise they new who had found him and Me and Jamee drove all the way back up to Boise to get Digger and then right back home. Needless to say that wasn't the last time we lost him or left him somewhere. But the tales of bad dog ownership are for another time.

Jamee when on a trip with me and Charlee a few years back to Switzerland to see Grandma who was turning 103. It was a fun trip, Charlee kept telling us that if we were his greenies we would be in deep trouble. (We had a hard time with the food) So if there was something we didn't like we would just push it over for him to eat.
One afternoon, There was a party for her and they served her favorite cake. Charlee had just threatened us that we had better eat all our food cause he wasn't gonna cover for us. So we sat down and started eating our cake, let me tell ya there was nothing sweet about it, I could hardly gag this cake down. I decided after the first bite that I would have to eat the rest in big bits to get rid of it and get it over with. That lasted about three bits, by this time we had been sitting there for about a half hour, I started feeling a warm tingling feeling come over me, just like after you take a big swig of NyQuil. Ya well, I realized that I was in fact drunk, Luckily Jamee had only barley tasted it. But not Charlee, he had licked his plate clean so he finished up mine and Jamee's and he drove us home.
Jamee and Ashlee have been friends since they were just babies.
Jamee loves the fact that they can have such different interest and still be best friends.
I think that they will be friends forever.
James and Chuck!

Jamee, I love you so much.
I'm glad that I'm your mom.
Thanks for being my daughter and my friend.
P.S I am so glad you have your drivers license. Love mom

Tuesday, June 1, 2010

Happy Birthday Charley-Anne!!!

Oh my goodness What to say about Chuck!

I have said several times that my life was totally changed when my third baby came. I can safely say that I haven't fully recovered from it. Mostly because of the fact that I only had two hands. I am however glad to report that things didn't get worse as the other two came along.

I was very excited to have another baby, but this pregnancy was much harder than the previous two. I was so sick. By the time I was about 3 months along I found myself checking into the hospital for dehydration, they kept my there for 4 days hooked up to an IV. And was everything ok at home you ask? Well, The first thing I discovered was that someone had cut his own hair, I found proof all over the bathroom and somehow Charlee didn't seem to notice the bald spots on Dewey's head. Thank heaven for clippers.

Charley-Anne Was born June 1, 1992 In the Tooele Hospital at 5:30p.m. She was my first natural birth so I was quite nervous and by the time I had past my due date by two weeks I was quite out of patience. My labor was only about 8 hours and when Charlee told me The baby was a girl I was so happy to finally had a little princess to dress up. We didn't know her name until we saw her. But Charley-Anne seemed to fit.

From the time she was a little girl she has been real good at demanding our attention. When she was real little if she wanted our attention, which was often she would knock on our leg of some other part of our body and say "knock, knock, woo,woo,.." It was cute.

Charley-Anne was a good baby, and a good easy going little girl. She loved to play dress up and get her hair done, but Don't let that fool ya, she could get as dirty as any boy.

I'm happy to report that Chuck and I share a love for girls camp.

A true Blonde!
She started off in this life with alot of beautiful honey blonde hair. It turned white as she got a little older then when she was 6 or 7 it started to darken up. Now days she likes to color her own hair, which about 3 months ago didn't turn out so well and it cost ME about $120 to get it fixed.

She went though a little bit of an gawky stage but the results are spectacular.

Charley-Anne is quite independent and I love the fact that she is so easy to get along with.

She is a hard worker. Up until a month ago she worked for her dad cleaning up the job site and she always did a great job. Her new job is out at the Miller Sports Park on the janitorial crew. I am real proud of her decision to sick with the job even when it looked like she might not be able to attend her seminary graduation. Cleaning up after drunk people could not be that fun but she come home from work with a smile on her face and a story to tell.

When she gets laughing you can't help but smile, and some times She gets in trouble because she doesn't know were to draw the line on her giggles.

I've said before that she reminds me of Erica, Like the sound of her voice her looks and her determination. But she also has another cousin that several times Charlee and I have looked at each other and both said ah Kristy Bledsoe. This is who she gets her giggle fits from. If Charley-Anne can Grow up to be just half the women that these two are I will be very proud indeed.
Charley-Anne, being on the younger end of both sides, has many good examples to lead the way. Thanks to all of you.

Charley has also been blessed to have good friends.

I always hoped that Charley-Anne And Jamee would be friends and they are. They fight like sisters and always have each others back.. I love seeing them together.

Annie I love you like crazy.

Saturday, May 1, 2010

Happy Birthday Erica!!!

I love working on projects!
Especially when they have a purpose or meaning.

Right now I am working on a project for my mom.
Several years ago she quilted a Hawaiian Quilt and said that she would like to do one for herself one day. Russell and Christy purchased an appliqued quilt top from a lady in HI and when it got here it wasn't finished it was only basted on. Mom has asked different people over the years to applique it but no one would or could.
I have been trying to get down to Levan to visit with her more. I try to take something to work on while we visit and and helped her get a few little quilts put together to do on her lap, but she isn't truly happy without those frames set up.

Durring my visits the subject of this quilt always came up, and to tell you the truth it looks quite intimidating, but I could tell that it bothered her not having it done. So, I took of the challenge, It's not as hard as I thought it would be, and my goal is to have it finished by fall so she can quilt it.
My most favorite project So far has been for my sister.
Patty called me not long after Erica had passed away, and asked me to help her with a secret mission. I would make Teddy Bears out of Erica's Pajama pants. I was honored to be doing this, and let me tell you there were a lot of tears shed while I sewed and stuffed.

The day of Unvailing had arrived Sunday, May 2nd 2005 Erica' Birthday Five years ago today to be exact. I was so excited to let everyone in on the surprise, and also to see Patty's face when she saw the finished product. She hadn't seen the pants since I took them from her house three months earlier. I think she liked them, and I think the girls were also surprised. I think Alisha said she had been looking for a pair to wear but couldn't find them.

But before I boxed them up, I sat all 24 of them together and took their picture.

I remember this day like it was yesterday!

I miss Erica so much, oh I love that special girl.
But, I do get to have glimpse of her quite often because Charley-Anne looks a lot like her and she also has the same sound in her voice and laugh. I think anyway.

Wednesday, April 28, 2010

I can't believe he's 20

Happy Birthday Jeremy!

You are my little Hawaiian baby!

We seriously considered naming him Kona, after the Hawaiian winds,
it would totally explain his personality.
Jeremy was born April 26th 1990 on the Island Maui.
Charlee was discharged form the hospital a few days before after being there for two weeks due to his appendix rupturing. Jeremy was born at 11:30 in the morning, and soon after the doctor had him cleaned up Charlee went over to the airport to pick up Grandma Mangelson and Aunt Marilyn, who came all the way from the mainland to lend a helping hand.
Charlee brought the straight to the hospital, to see us, but there was just one little problem, the maternity ward was under high security which means no visitors. They couldn't come back to my room or see the baby. so you guessed it I had to travel out to the waiting room to see them just a few hours after having Jeremy. What was the big deal? Well, first of all it had been about 6 months since i had seen my mom, and second I had just had major surgery Jeremy was born C-section. The painful journey was short but worth it.
The two of them quickly became very useful. While the hospital staff insisted on starving me until my stomach" recovered" from surgery I sent them home to whip me up some chocolate chip cookies, by that point I hadn't eaten for about 4 days and I was hungry so they smuggled me in a snack. They did a great job holding down the fort and taking care of Dewey until I was released from captivity. We then spent the next week and a half touring around the Island, with a new baby in tow. needless to say I didn't get much rest until they went home. I felt bad that they came all that way to just tend me, and We were in Hawaii for heaven sakes I could rest later. May I add my house was never cleaner all 800sq. ft of it.

Jer never has required alot of sleep from the time he was little he was the last in bed and the first one up. I got tired of staying up with him so I taught him how to turn off the tv and he went to bed when he was done. (Pic in the rocking chair) was one of those late nights
Jeremy provides us with 24hr. entertainment he is quite the clown.

We have several Jeremy stories but i don't have time for a novel.

1. He stomped on a spray paint can to see what would happen
2. He got hung up in the basketball hoop and hung by his teeth after a slam dunk went wrong.

Jeremy loves spending time with his buddies
he loves motorcycles and trucks.

I worried alot over this kid and I'm sure that will never end, he struggled to get through school and I have wanted to strangle him several times, but in the end we are usually laughing.
I love you Jer,
Handsome as ever!