Friday, September 11, 2009

Tuesday, July 28, 2009

Evie's First Birthday at home


Evie has officially been diagnosed as having Chronic Benign Neutropenia in Infancy. Here is a link you can go and read about her illness. She will still have level drops, we just do not know when they will occur. We go every Monday now and get her blood drawn to see what her level is and every Thursday I have to give her a shot. The shot is medicine called Neupogen, which will boost the white blood cells to help keep her level around 1500, which is normal. She received her first shot on June 23 and her level was 100 then. Today I gave her a shot for the first time and her level was 300. So, already the shot has helped her!! We will continue this until her level is above 1500 and climbing. We do not know how long the doctors will want to stay on this medicine. The good news is that all this will not lead or develop into leukemia. Also she is expected to grow out of this by the age of 5. Praise God for that. She is doing well, she is walking all over the place almost running at times and into everything. She turned ONE today, she could not go anywhere because of her level nor could we have a party. But, that will all come in due time. We will have a party when the doctor gives us the green light and we will celebrate for her like we have never celebrated!! I did however get her a smash cake for her to tear up tonight I cannot wait to see it, pics will be posted soon. Thank you all for your love and support and all your thoughts and prayers we could not have made it through all of this without you all. You are all our angels. We love you.
As Always Go Hogs,

Wednesday, July 8, 2009

Evie update

We came home from the hospital July 3!!! The goal was to be home was to be home by the fourth and we did it! The hematologist/oncologist (blood and cancer) doctor said on Wednesday the 2nd that if her levels were in the 500 range it may be safe for her to go home. So, on Thursday morning they drew blood and her level was 532! The hem. doc said it would be safer for Evie to be at home, less chance for her to catch infection than in the hospital. She said she could go home and we started packing as fast as a flea jumps on a dog. We were out of there by 2:30 and in our house by three. I can honestly say it has never felt so good to sleep in my own bed.

The doctors said that even though she is at home, she still has to pretty much live like she is at the hospital until her level get into the 1500's. Which means no visitors and she cannot go into crowds. She will have to continue to get her levels drawn once a week for the next two months. We went the on the fourth, that was the longest two days it seemed to find out what her level was. It was 500. It dropped 32 counts since she had been home. we went again on Monday and it was 720!!! She is starting to get better. I am praying so much that whatever this is neutropenia/virus whatever will go away and never come back. It isd the hardest thing in the world to have to go take your baby who cannot tell you whats wrong, and watch them put needles in her little tiny arms. God give me strength.

So, even though it was the 4th and Evie could not participate. Even if she could her attention span would have lasted for like 2 seconds anyway, but just the fact she could not go outside and see it, her daddy brought it to her. Shane is so great. He went to a fireworks stand and bought like six 3 feet tall sparklers, and stuck them in the ground so Evie could watch them from her room. The high school down the road puts on a huge fireworks show every 4th so we watched it from her bedroom, as well as the 3 ft. tall sparklers. By the way the sparklers only lasted for about 2 secs cause after she saw it lit she looked at it then went and destroyed all her drawers and pulled out all of her clothes onto the floor. That was way more exciting to her she thought.

You would have never even thought Evie had even been in the hospital for 7 days if you had seen her. She is so full of life. Hurricane Evie has definitely struck at least twice since we have been home. Her knew thing is climbing into the fireplace and taking a log out and bringing it to us. It now has plexi glass in front of it. She is talking up a storm, she says momma, da da, ki ki (kitty) na na(noni), O and O boy, and Nummi. She also give kisses they maybe open mouth but they are the best kisses you will ever get. She has a favorite show. Its the only show she will sit and watch, well she dances to it too. Its called Super Why on PBS its great. She is growing up so fast.

I will continue to update on her health, please keep praying for her and for Shane and I. We love you all! As always Go hogs!

Wednesday, July 1, 2009

The Beach


I just wanted to let everyone know what has been happening with Evie. It all started the week of our 3 year anniversary. The 17th of June is our wedding anniversary and that whole day she had been tugging at her right ear. I did not think anything of it, because she had her 7th tooth coming in. Normally she just has the runny nose and diarrhea. That night Shane and I went to dinner and this wonderful couple in our neighborhood watched Evie for us, and when we picked her up they mentioned she had been tugging at the ear as well. So I called first thing the next morning. I now have an appointment for Friday the 19. We go the doc looks and says the ear look fine just some clear fluid. By the way this is not her regular ped. she is seeing. This doctor does not put her on antibiotics. She says if the ear is still bothering her come back Monday. Its fathers day weekend now. Of course the Ear is still bothering her. So I call Monday, we cannot get in.
Its Tuesday the 23 and Lindy is here to visit. Evie woke up at 3:30 a.m. so I thought for a bottle but she was burning up with 103.4 fever. So we rushed to the emergency room and she had a double ear infection. Thanks to the doc not putting her on the antibiotics. So I was alternating Motrin and Tylenol every 3 hours. The fever however never went away. It just kept climbimg. During the day it would go down to like 102.1 that would be the lowest but at night it would get to 104.4 so back to the er we went. Its now Thursday the 24th at 1:45 in the a.m and Lindy has traveled back to Arkansas and she is running 104.6 and we are headed to the er.
We arrive in the ER and I had given her infants Motrin before we left the house and by the time we had arrived at the hospital it had only dropped to 103.1. So we waited for 2 hours until they put us in a room. Once we finally got in a room we saw the same ER doctor who saw her on Tuesday (which is good she knew us). She looked Evie over and decided to do some blood work, and do a catheter to check and see if she had a UTI and get a sample of her mucus. The results showed dehydration and viral pneumonia. So she admitted us for the dehydration. She said that was her main concern. It was now early Friday morning at this point.
So, it is now Friday the 25th, and we have been admitted for dehydration. She was hooked up to and IV for fluids. Saturday morning they drew her blood to see if she was still dehydrated and she was not. however the blood work showed she was neutropenic. Which means, her white blood cell(wbc) count had dropped below 500. Her white blood cell count was 380 on Saturday. So they put her on Rocephin antibiotic and that made her so sick. So they came back Sunday to check her wbc and it was 250 they stopped the Rocephin and started a new antibiotic called 4 taz specifically for neutrapenia. Monday her wbc level was 90 so they drew more blood and sent it off to Utah to see what the cause may be. As of Monday they know it is a virus, they do not know what kind of virus. Tuesday was a good day her levels were 264!!! A baby or an adults wbc levels are anywhere from 1500-3000 a cancer patient is 0. Today is Wednesday Jul 1 and her wbc is 48. She is now scheduled for a bone marrow test tomorrow at 8 a.m. to find out more information. The white blood cells are made in the bone marrow so this will help out tremendously. We are praying this is still a virus and not anything worse and that it can be cured. Please help us pray.

I will continue to keep posting updates as much as I can. Thank you so much for your thoughts and prayers. God is god.
we love you all,
Brittany and Shane

Thursday, May 21, 2009