Saturday, October 25, 2008

Trunk or Treat

Our ward had it's annual Trunk or Treat tonight and I just wanted to show off who I was lucky enough to attend with.
Belle was kind enough to let me tag along with her, and just when I thought I was the luckiest lady around.......
Minnie Mouse showed up and decided to come with us! What a night! Turns out these two gals know and adore each other, they decided that I wasn't half bad either, so they came home with me and let me tuck them in bed. BEST NIGHT EVER!!!!!!!!

Lattin Farms







Last Saturday, Rod and I took the girls to Lattin Farms to do some pumpkin pickin' and just have a fun day together as a fam. It was a fun day, even though Brinley slept through part of it. Rod and Malia did a great job picking out our pumpkins, and who doesn't love the bouncehouses and horse/cow ride thing.
Brinley enjoying an afternoon nap
Rod and Malia taking a hayride to the pumpkin patch
Looks like they found a couple of winners



I have to be honest, I am not really sure what they call this "ride," but Malia loved it. She rode it around 3 times. Brinley was not such a fan, and was done after the first go round!
Having tons of fun in the Bouncehouses!

Sunday, October 19, 2008

Finally.... An Answer!!


We had an appointment with Brinley's Hematologist on Thursday and finally received a diagnosis. We were told that she has something called Hereditary Spherocytosis. Basically, her red blood cells are in the shape of a sphere, instead of a disk/doughnut shape, like ours. I found this article on the internet, it explains the whole thing better than I could.





Definition of Hereditary spherocytosis

Hereditary spherocytosis: A genetic disorder of the red blood cell membrane clinically characterized by anemia, jaundice (yellowing) and splenomegaly (enlargement of the spleen).

In HS the red cells are smaller, rounder, and more fragile than normal. The red cells have a spherical rather than the biconcave-disk shape of the normal red cell. These rotund red cells (spherocytes) are osmotically fragile and less flexible than normal red cells and tend to get trapped in narrow blood passages, particularly in the spleen, and there they break up (hemolyze) leading to hemolytic anemia.

The clogging of the spleen with red cells almost invariably causes splenomegaly. The breakup of the red cells releases hemoglobin and the heme part gives rise to bilirubin, the pigment of jaundice. The excess bilirubin leads to the formation of gallstones, even in childhood, There is also often iron overload due to the excess destruction of iron-rich red cells.

Hereditary spherocytosis is most common in people of northern European ancestry. It often shows up in infancy or early childhood, causing anemia and jaundice. The bone marrow has to work extra hard to make more red cells. So, if in the course of an ordinary viral illness, the bone marrow stops making red cells, the anemia can quickly become profound. This is termed an aplastic crisis.

Laboratory studies show evidence not only of many spherocytes but also increased numbers of reticulocytes (young red blood cells), hyperbilirubinemia (increased blood levels of the jaundice pigment bilirubin due to the breakup of the red cells) and increased osmotic fragility of the red cells.

HS is due to a deficiency of a protein called ankyrin. Ankyrins are cell membrane proteins (thought to interconnect integral proteins with the spectrin-based membrane skeleton.) The ankyrin of red blood cells (erythrocytic ankyrin) is called ankyrin-R or ankyrin-1. It is represented by the symbol ANK1.

The HS gene, that for ANK1, has been mapped to chromosome 8 and, specifically, to chromosome band 8p11.2. HS is inherited as a dominant trait so, if a person with HS reproduces, their child (irrespective of whether it is a boy or girl) has a 50:50 chance to have HS.

The treatment of hereditary spherocytosis is to remove the spleen (splenectomy). Although the red cell defect persists, the breakup of the red cells (hemolysis) ceases. Splenectomy, however, is a hazard in young children. Young children without a spleen are at increased risk for overwhelming sepsis (bloodstream infection), particularly with the pneumococcus bacteria. Splenectomy is therefore usually postponed if possible until the age of 3 years. Before having a splenectomy, anyone with HS should have the pneumococcal vaccine. Persons with HS (or another cause of brisk ongoing hemolysis) should take supplemental folic acid.

The prognosis (outlook) after splenectomy is for a normal life and a normal life expectancy.

HS is also known as congenital hemolytic jaundice, severe atypical spherocytosis, spherocytosis type II, ankyrin deficiency, erythrocyte ankyrin deficiency, ankyrin-R deficiency, and ankyrin1 deficiency.


So, we are looking at getting her spleen checked twice a year until about the age of five, when it will more than likely be removed. I have to start giving her a folic acid supplement, and she will have to get a couple extra vaccinations. I'm sure that we will keep learning more and more about this as time goes on, but for now, I am counting my blessings and thanking my Father in Heaven that this is all that we are dealing with, it could have been much worse. Rod and I will be getting tested to see if one of us passed it on, or if it was just a mutation. If one of us has it, then we will have Malia tested to see if she has it too. We will keep ya posted.

Oh yeah, it turns out that I'm not such a bad mom after all. Brin's immune system just isn't what it should be!!

Friday, October 17, 2008

Malia's first crush!

As I was driving Malia to Ballet on Wed. she noticed the car next to us had a bumper sticker on it with a photo of Barack Obama on it.
M: Oh, it looks like they want Barack Obama to be our next president.
Me: Yea, I guess they like him. Who do you think is going to be the next president?
M: Um, I think Barack Obama is gonna win, but I really like John McCain.
Me: You do, huh?
M: Yea, I want to marry John McCain
Me: You what?
M: I want to marry John McCain
Me: Why do you want to marry him?
M: Because I think he is so handsome
Me: Oh, ok, what do you think makes him so handsome?
M: I like it when he is on T.V. and says, I'm John McCain, and I approve this message. He always smiles when he says that, and I really like his smile.
Me: Oh, that's nice. Don't you think that maybe he is a little bit to old for you?
M: No, I mean he has white hair and stuff but I still think he is handsome.
Me: Sweetie, did you know that he is married already?
M: He is?? What is her name?
Me: Cindy
M: What does she look like?
Me: She has blond hair and she is beautiful, but you are just as beautiful.
M: Oh, ok. I just want to marry him.
Me: Sweetie, I don't think it's gonna work out.

I think I'm in trouble with this girl!!!
Maybe she could campaign with John McCain??

Sunday, October 12, 2008

Pucker Up!!


How can anyone resist these cuties??

Wednesday, October 8, 2008

I'm Back!

So I have been told by a few family members that I am a terrible blogger!! So thus commences the mother of all updates, you asked for it peeps!! I will go back about 7 weeks, Brinley had been sick and we were told also really anemic. Lots of iron and blood tests followed and there was no change in the iron levels. The doctor called me on a Tues. evening, I believe it was the 2nd of Sept., to let me know that he had done all he knew to do and that he was faxing her blood work to a Pediatric Hematologist at U. C. Davis. I was a little shocked and asked him why the concern, what are we talking about here? I already knew what he was about to say, I had done alot of research online, I just wanted him to confirm my suspcions. He let me know that they were testing and looking for Leukemia. My worst fears confirmed. I really don't remember the rest of the conversation, but I knew it would be at least a week wait until we knew for sure. How could this be happening? Rod was playing in the front room with the girls, so I let him know what the doctor had said. He was great to let me be alone in my thoughts and ponder what this would really mean for our family. That night I found that I did not want to be around anyone, especially Brin. I tend to pull away from people in stressful times and I felt that if I was going to lose her, then I didn't want to fall more in love with her. Thank goodness for routine, because the next day, Malia had school, I went to my regular class at the gym, and then we went to ballet. I had woken up with a new perspective. I wanted to be with Brinley every waking minute. I took more pictures, and found that I just let the little things go. It really helped me to focus on the more important things in life and let go of everything else. The next few days were long and full of a roller coaster of emotions. Late Fri. night I recieved a call from the Doc. He let me know that the Hematologist had ruled out Leukemia, and we were looking at a genetic form of anemia. We would meet with a Dr. Hastings from U. C. Davis to find out more about what we were dealing with. I hung up the phone and started to bawl!! I don't ever remember a time I have cried like that. I had no idea the stress I was carrying around until I let it go. It was such a relief to know that we would not have to go through the process of fighting leukemia, and as dumb as it sounds, I am so greatful for those few days when we thought that we might. It has really caused me to slow down, take each as it comes, and remember that our plan for our lives may not be our Heavenly Father's plan for our life. We met with the doctor on the 22nd of Sept. and it was such a waste of time. After talking to us and asking random questions for a couple of hours, he said that they don't really know much until they take more blood and test it. 5 vials of blood and alot of tears later, we were out of there. We meet with them again on the 16th of Oct. That weekend I flew to Vegas, rented a car, drove to St. George, and went to my 10 year high school reunion. It was pretty fun and interesting to see everyone again. I talked to alot of people more at the reunion than I ever did in high school. Weird how that works, huh?? It was great to see everyone and hopefully it won't be another 10 before I see some of you again. It was a fun, but quick trip, and it was also good to get back. It's good to be missed!! We have just been up to our normal routine lately, getting in the Halloween spirit, and planning a few Halloween parties! I have started some Christmas shopping and cannot believe that it is that time of year again. We are planning on spending the holidays in St. George and on Cedar mountain. I am so excited, I love Christmas!!!! A few photos for your veiwing pleasure. Enjoy!!
We went to a Halloween Festival last Saturday. Malia got her face painted and played a few games. I paid a dollar for a cupcake and all was well, A dollar for a cupcake!!??
This little piggy went to market......
This little piggy stayed home...... Easy way to get a good laugh, right??
The girls hanging out in Rod's patrol car
Brinley loves tomato's! We had turkey burgers a couple of nights ago for dinner, and she just wanted the cheese and tomato's. The first picture I took of her, she smiled so big that her eyes were squinted shut, so I told her to open her eyes. Here is Brinley with her eyes open!!

A little bedtime story from Brinley and Malia