The color white

For most...the color white is boring and bland. For me...white is awesome...at least when it refers to Sierra.

It's been almost three weeks and Sierra's not turned yellow once!!! For the first time in ten years her eyes have been white. Not only that...and this is going to sound weird...but I was walking outside with her and looked down and her scalp was even white!! We have NEVER seen her like this and it's exciting!! You see...It's not just the color...but the meaning...This means she's not losing blood cells!! It means that she won't be tired, she won't be jaundice, and she wont be in fear of needing a blood transfusion.So I know this is kind of a boring post...but I had to share. THANKS for listening!! Hugs,Suzy West

Life brings changes...

Life brings change...

Sometimes they are little and no big deal and some are huge and can change your entire life. Like many of you, I have been dealing with a lot of change in my life.

Our family keeps pretty busy...especially me. I've been working on a lot of projects that have to do with my professional life that have made a difference in our family life.
This last week, I said NO to some more really big projects.
I made an easy decision to put other more important things FIRST. The main one is right here.

SIERRA

As you know, my little one is having surgery this week. I've kept busy doing a lot with her as she will not be able to do a lot after her surgery. She'll be in the hospital for possibly a week and then stuck at home for a week. She'll start 5th grade right after so I need to make sure she's totally recovered. I appreciate all the wonderful emails and phone calls about your concerns for her. Many of you have asked what hospital she'll be at. She'll be at El Camino Hospital in Mountain View. Her surgery is on August 18th.
Another big change...
My heart has been heavy the last few weeks over other family members. As you know, I'm very close to my family. I love my family with my entire being and I would pretty much do anything to make sure they are safe and happy. Recently I learned about some very disturbing news that had to do with my niece and nephew and since then, it's been very hard for me to sleep, eat, or think. I've had several conversations with my family expressing how upset I am and how I expect changes to be made...NOW!

As of last night, our family made the decision to bring him to stay with us. I'm so happy to welcome him into our home. It is a temporary situation but while he's here...he's MINE. I want nothing but to love him, feed him, and take care of him. He's been through so much and I just want to see him smiling over happy good things. Jeremy is up right now cleaning out his room because they will be staying together. I'm so proud of my son. Last week we talked about getting him a brand new bedroom set that was more "grown up" as he's entering his senior year of high school. As of last night...we made a decision to go the opposite direction and get bunk beds so that they have space in the room. My heart jumped as I looked at him and with a smile on his face he said, "that sounds good to me." I went into his room and noticed all of his clothes everywhere and all the drawers were open. I asked him what he was doing...he said he was condensing all of his clothes because he was going to share the room equally with him and so half the drawers and closet are for Robby. Love my kid.
Okay so I've talked about a lot of big changes...I want to tell you about a little change. A few days ago..it was a big change for ME...so not! LOL I'm re-doing my scrap area. I started it last week and then had to drop everything. Seriously...everything is everywhere right now. This is all I have done since we started. A lot of you know that I'm working on my scrap area and want to see pictures...this is all I have. Once It's complete I will show you more. I picked up baskets, jars, and more stuff but I haven't gotten to it yet. I need to finish picking up stuff and getting the other items taken to donation.

This week will bring many changes as we get used to having another teenage boy here and taking care of Sierra as she goes into surgery and then starts the recovery process...to a change that is supposed to make her life better.
Please keep us in your thoughts and prayers...we definately need them. Hugs, Suzy West

Sierra update

Last night I received a phone call that Sierra was re-admitted in the hospital.

My heart just broke, I was in the middle of hosting a crop of hundreds of amazing women and there was nothing I could do about it. I went to the back...cried for a few minutes...found out the details...and went back out as I knew there was nothing I could do.
I want to start out by saying that I have an amazing husband. He has stayed so strong through this whole thing and has not left my Sierra's side. He's been extra cautious as he knows I am freaking out...double checking everything every time I get a break (I have called Dr's., bishops, specialists, etc). Paul keeps telling me everything is okay and says, "Don't worry, I got it". I don't know if he knows this but every time he says that...I feel really good and it reassures me that everything will be OK.
Sierra has pneumonia. It started out on one side of her lung...she caught another bug and now has it on both lungs. For children with Hereditary Spherocytosis...pnemonia is really bad. She's going to have surgery next month...It's supposed to help her a lot. She's been so bad I suggested we do the surgery now, but unfortunately...they say there is no way, she's too sick and not prepared.
So we are going to get her all better and prepare her for next month.
I didn't sleep last night, I kept texting with Paul to find out the details and for about an hour...I did nothing but cry thinking that about her and how much I miss her. I'm also sad for my son Jeremy...my lone ranger...who gets forgotten...not on purpose...but it happens as we have been in and out of hospitals the last few weeks. Next week...I'm going to take him out and spend some quality time with him.
I called Paul this morning to find out more details. He said that the nurse said that we have one of the sweetest little girls. He asked why. Last night he laid down in the hospital bed with Sierra and this morning he finally fell a sleep. The nurse came in to check on her and Sierra had one request, "please don't wake up my daddy".
I am so blessed to have the sweetest little daughter, I love her so much.
Thank you to everyone for your continual prayers.
Sierra loves reading your posts so please leave some here and I'll be sure that she gets to see them. Thank you everyone!!
Hugs
Suzy West

I can't believe I'm saying it...It's official...

We have set the date for Sierra's surgery!!

It's scary to think my little baby girl will be having surgery but truth be told..it's much needed.
Her little 56lb body has been through a lot!
I still remember being in the hospital two weeks after she was born because she couldn't come home. They couldn't figure out why she was so jaundice and why her levels wouldn't change. They called in a hematologist and she asked me if anyone in our family had a blood disorder. At first I couldn't think of anyone...because I was only thinking of my side...DUH...it takes two people to make her and my husband had Hereditary Sphero Cytosis. The "A-HA" statement from the dr. said it all...my baby had the same condition.
So through out the years, Sierra has had to deal with losing blood cells, feeling tired, and turning yellow.
This is going to help her. She is still going to have some issues to deal with but it's going to be better.
So today...we found out that she's also going to have her gall bladder taken out. Because of her condition it's a given that she's going to have gall stones UNLESS they take it out.
We set a date for June 14th but found out that it was her last day of school, so we changed it for Friday, June 17th. She's set for 10:30am.
I believe in the power of prayer and have a ton of faith. We would appreciate your prayers as well!!!
Thanks for listening and thinking of my little Sierra.
Hugs
Suzy West

we knew the day would come...

I can tell you everything about the day Sierra was born. It was more than NINE years ago and I still remember what I was wearing, what I did that morning, and the look on the face of the dr. that I had met with and told me I was giving birth...THAT DAY!

It was two months BEFORE Sierra was due and even though I wasn't ready...she needed to be born. I could barely move. My blood pressure was way high and I had Toxemia and preeclampsia. I got in the car with Angel who had gone to my appointment with me and called Paul to tell them that I was going straight to the hospital to be induced.

There was ONE fear....that her lungs wouldn't be fully developed.

The NIGHT Sierra was born, we were grateful that she was fine and that her lungs were fully developed. There were fireworks in the sky because it was the 4th of July. I was holding her and she was awake looking up at me. Even though I knew she probably couldn't see me clearly I honestly felt as if she was scoping me out.

That same night we saw that she was a little yellow. The nurses took her from me to check her out. They put her under the lights because they said she was jaundice. When she was in the bili machine her biliruben levels would go down. When they took her out they would change and go way up high.

She stayed in the hospital for problem for two weeks. The day before she went home a new dr. came in and asked me if anyone in my family had blood issues. I immediately thought of my family and said no. Then DUH...my dh helped make her...I told the dr. that he had a condition called Hereditary Spherocytosis.

I remember her saying, "that's exactly what I thought you would say".

Through out her life she's been in and out of dr. visits over this very condition. One thing we knew would probably happen one day was that they would need to take out her spleen.

well...we think the time has come to consider taking it out.

We know that our blood dies every 120 days. For people with HS it's different. Their blood dies faster...they say about every 50-90 days (everyone is different). The HS specialists today said they think that Sierra's blood is dying about every 15 days!! She does make new blood very quickly but what they have also found is that her body is working to fix things about 15% MORE the normal rate it should be working. She should be exhausted!

They also worry about her getting gallstones. People with HS get this.

If we take out the spleen it will help her a lot. It will probably take away the jaundice. (She may still have some symptoms because she also has Gilberts disease)

her red blood cells won't be killed off so fast like they do now.

She won't have to worry about anemia, gallstones, and other symptoms.

They say that it may even give her more energy and she'll feel a lot better.

The dr. has NOT decided what to do yet. He wants to think about it because even though she has these issues...she's actually quite healthy. Even though she is jaundice she's full of energy. She has not had to get a blood trasfusion yet.

So he says we have time to think about it and he wants to talk to us as a family. We are meeting back with him next month.

Sierra was a little scared but he made her feel a lot better and she told me that she thinks it might help her.

She was so cute. She took on the challenge I gave out today to smile more. I looked at her from the rear view mirror and saw that she looked a little sad. When she looked at me she flashed me a HUGE smile. She then said..."you remember the challenge". It made me smile.

We joked around and sang the rest of the way home.

We are going to pray about what decision we should make.

If you read this whole thing..thanks for "listening".

Hugs,

Suzy West