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Sunday, November 30, 2008

Update #2


We are home from the hospital for now!!!!! We went up to Primaries on Friday afternoon. There was more blood in Hannah's poop!!!!! We spent the most part of the the night in the ER.

Running tests, taking EX-rays and blood. THey admitted us and gave Hannah medicine to clean her out, because in the morning we were going to do a scope down her stomach to see what was going on. Then next morning she was on a clear liquid diet and at noon the doctor came in with a different idea. He wanted to do a Meckal scan (like a MRI) on the intestinal area. We had to wait for a special radiologist so thats just what we did. WAIT..... they did decide she could eat regular food and boy did she eat!!! Chicken cordon blue, cheeseburgers, baked potatoes, cheese cake, shakes and more. Saturday we were still in limbo waiting for the radiologist and trying to figure out why her platelets were going up and down. Today, Sunday...... the doctor came in and said we still can't get the scan today, so here were the options, stay another night then do the scan Monday or go home, get some rest and come back Monday or Tuesday. That was what we chose, so we are home making cupcakes with Hannah's new cup cake maker her prize for being a good girl!!

Thursday, November 27, 2008

HANNAH UPDATE


We did our weekly blood work Wednesday and had quite the scare!!!! Last week Hannahs platelets were at 135,000 a little on the low end. She stayed on the same amount of steroids and the docs were hoping things would go up a little...... Well, she had to go potty. She came out and said the toilet wouldn't flush. I went in and noticed there was blood in her poop!!!! This was something they told me to watch for.. so I kind of freaked!!!! I called every doctor I knew of and 3 hours later (to make a long story short) I finally got a phone call back.. Her platelets were down to 22,000!!! The doctors decided to keep her on the same dose of steroids again and gave us specific signs to watch for. Let me tell you, this girl knows how to scare me to death!!!! The docs comforted me a little by saying if the water doesn't turn red, then we aren't as worried.

We are keeping a close eye on her an are hoping to make it to the next week!!!!! We'll keep ya posted!!!!

P.S. this picture was when she just woke up, she doesn't always look this way!!!!

I AM THANKFUL FOR.....

I WOKE UP THIS MORNING AT 6:00 AM. I COULDN'T BREATH (THANKS TO SHARING DRINKS WITH HANNAH & MAKENA, I NOW HAVE THEIR COLD). I TOSSED AND TURNED FOR ABOUT 45 MINUTES AND DECIDED TO JUST GET UP!!! I CHECKED MY EMAILS, TOOK SOME ADVIL COLD & SINUS AND DECIDED THIS IS A GREAT TIME TO REFLECT ON WHAT I AM THANKFUL FOR AND WHY!!!! SO HERE WE GO:

1ST- I AM THANKFUL FOR MY FAMILY. DAN, FOR HOW HARD HE WORKS TO GIVE US ALL THE THINGS WE HAVE. TAYLOR, FOR UNDERSTANDING ME AND KNOWING WHEN I AM LOOSING IT SHE GIVES ME MUCH NEEDED TIME ALONE FROM THE KIDS. ETHAN FOR BEING JUST LIKE ME. WE ARE SO MUCH ALIKE ITS SCAREY. HE IS SO TENERHEARTED AND LOVING. HE ALWAYS KNOWS WHEN I NEED A KISS. HANNAH...WHAT CAN I SAY ABOUT HANNAH.... SHE MAKES ME LAUGH & CRY ALL IN THE SAME MINUTE!! SHE CAN SING & DANCE LIKE NO OTHER!!!! MAKENA, MY BABY WHO IS GETTING SO BIG. SHE WANTS TO BE BIG, BUT STILL THE BABY!!!!! SHE IS THE SWEETEST, QUIETEST, FUNNIEST LITTLE THING!!

2ND- MY MOM & DAD. THEY ARE GOING THROUGH SOME OF THE TOUGHEST TIMES IN THEIR LIFE AND YET THEY MAKE IT THROUGH. THEY HAVE SHOWN ME WHAT TRUE LOVE IS AND I LOVE THEM FOR THAT!!

3RD- MY SISTERS & BROTHER. THEY ARE MY BEST FRIENDS, AFTER DAN OF COURSE!!! I REALLY DON'T KNOW WHAT I WOULD DO WITH OUT EACH OF THEM.

4TH- MODERN TECHNOLOGY & THE DOCTORS WHO USE IT!!!! NEED I SAY MORE??

5TH- MY FRIENDS..... LIZ, JANENE, & AMY..... THEY ARE ALWAYS THERE FOR ME...EVEN IF WE HAVEN'T TALKED IN WEEKS. IT SEEMS TIME DOESN'T REALLY MATTER WITH THEM!!!

I KNOW THERE IS SO MUCH MORE I AM THANKFUL FOR, BUT I THOUGHT THESE 5 ARE GREAT FOR NOW. I LOVE YOU ALL AND AM THANKFUL FOR EACH ONE OF YOU!!!

Monday, November 17, 2008

ETHAN'S BIRTHDAY!!!


Carson, Ethan, & Kyle

Thanks to Jeanette for noticing I hadn't blogged about Ethan's birthday!!!! I now have it done.

Poor little "E" we were kind of waiting to see what was happening with Hannah before we could plan anything!!! GREAT NEWS.... her last blood work on Thursday her platelets were up to 214,000!!!! (They were at 12,000 last week) So we were able to FINALLY have Ethan's party.
YEAH!!!
He invited a couple friends and we went to see MADAGASCAR 2. I have to admit, Dan and I were dreading this. We really hated the first one and were considering sneaking out and going to see the new James Bond!!! Luckily we came to our senses and didn't leave the kids there!!!!
The movie was great. I really liked it & the kids now have great new lines to repeat over & over!!!
We came home and they made their own little pizzas and just played. It was a great day and I still can't believe my baby boy is 9!!!! Time flies!!!!

Monday, November 10, 2008

The scariest day EVER!!!!!


This last week has been a week from dare I say, HELL. Hannah woke up with petechiae on her neck. This is something we have dealt with before, but it was worrying me a little. I sent a picture to Debbie (her awesome doctor) and she ordered blood work. Later in the day it spread to the other side of her neck, then behind her ears.

During the night, I had a HORRIBLE dream. Costco didn't have enough of her steroids so we had to go back & get more, something was wrong with the 2nd bottle and she died. I couldn't sleep much the rest of the night, so I kept watching her. Well the petechiae had spread up through her hair, down her back & front. I was freaking out!!! I emailed Debbie in the morning that it was spreading & she said she wanted us to see the Dermatologist up at Primary's. We couldn't be seen today so she had us go to our Pediatrician. They thought that because she had a fever, cough & runny nose that it was something viral, but the platelet count would tell us more.

We (my mom, Makena, Hannah & I) went to TImpanogos Hospital for blood work. That was an ordeal. Hannah hadn't had this done for quite a while and was so worked up. It is so hard for me when my kids are hurting. We made it through and went home. I emailed Debbie that we were done and almost immediately she called with TERRIBLE news. She said, "Becky, her platelets are so low. Don't let her rough house or hit her head. You need to made arrangements for your other kids because she needs to get to the emergency room. I am having the Hematologist look at her blood and I will call you right back!" I went ballistic. WHAT WAS HAPPENING TO MY BABY????? Debbie called back shortly and said she didn't need to come in today, but this week for sure. So we had an appointment for Thursday morning with an ONCOLOGIST. Don't let her hit her head, was our instructions. The next few days were hard to say the least. Not knowing what is going on is a scary feeling.

We went to Primary Children's Hospital Thursday morning. We got the the Oncology department and let me tell you, I could not even walk in the door. I was terrified. Tears started welling up in my eyes and I knew I couldn't do it. Dan & I bot got composed and walked in. Every where you looked there were pamphlets on cancer & leukemia. I seriously had to just look at the ceiling or I would cry. They called us back, talked to us a bit then sent us to do more blood work. Hannah was thrilled. They took quite a bit of blood and she was not feeling well at all. She hasn't had that reaction before, it was quite disturbing. She finally started feeling better and we went down to have lunch. THe next hour was nerve racking.....to say the least. We went back up to Oncology and waited for the results. The doctor came in and said, "It's not cancer, it's not anything to do with her thyroid, she looks good." It is "Immune Thrombocytopenia Pepura" or "ITP" It was like a weight was lifted from our shoulders. Basically it happens a few weeks after a virus and causes the petechiae and low platelets. On a normal kid you wouldn't have any problems, but because of Hannah's Nephrotic Syndrome it gets a bit worse. THey changed her steroid dose and we will do weekly blood tests until the platelet count goes back up. In the mean time, don't let her bump her head!!!!!

What a relief!!!!! We have never been so scared in our lives. We know that we are so blessed and Hannah is an amazing and tough little girl who can make it through anything!!!!!! Thank you so much for all your prayers and concern. We will keep you posted on her platelet count. Her first check is this Thursday!!!!!!