And Yet Again.....

I don't know why it surprises me...it is becoming the story of my life!!! I am asking again for a little prayer for Marshall...I was up most of the night with him...he has had trouble breathing and chest congestion. I just don't know why he just can't get over things...as soon as the doctors office opens I will be calling for an appointment. You would think they wouldn't be getting that sick as they are hardly around other people! I think its a test to see how I am going to handle things well...guess what...bring it on, I've been through worse!!! All seemed fine yesterday. We went swimming and no one was having any problems, till that night when he started coughing a lot. Its not his asthma that is causing him not to breathe well, he took all his inhalers and then I proceeded to give him a breathing treatment at about 11:30....don't worry I was still up watching Bazaar Foods with Andrew Zimmern. He sounds like it is the bronchitis or worse pneumonia...I hope and pray it is not either!!

I will try and do a post later, have a few pictures and some pretty good recipes or so we think so.....

Life in general....

Today has been an emotional one for me, and truth be told I'm not sure why all of this hit me today! I am thankful that Amelia is for the most part stable. Her counts are not the best, but they are holding for now and not having to go to transplant just yet. I have been pondering decisions all day today. I hate being the one to have to make life or death decisions...I have so many regrets with Marshall, I know he is here and doing pretty good but the road to here was pure HELL!!! I never want to have to go down that road ever again, but the sad part of reality hits me every time I look at my beautiful daughter....

I know that a bone marrow transplant is in her future, there is no getting around that. It is the when that I am having a problem with. I have been reading a lot about, androgens and how they can help bring up the blood counts and keep her held off on a BMT for a while, while they get better at perfecting the transplants. Then I talk to her transplant doctor and he would rather not put her on androgens as they can increase her risk factors during a transplant. I so want to be selfish here and say screw it and put her on the androgens, I want her here for ever...I would give anything to trade places with her! I would die in a heart beat so that she could live a long happy healthy life!!!

I know that it is in Gods hands and what is to be will be, but yet I am still responsible for making the decision to speed it along or slow it down....my head is in a fog and seems to be swirling with all kinds of information...sometimes I really wonder if knowledge is power! I so wish I could see into the future and see what decision I am suppose to make......

Well I have rambled enough....this too shall pass......

An up coming event....

I have some very great friends!!! They are putting on an event for Amelia to help raise money for us to use when she goes to Minneapolis for a transplant. When that happens we will be running two house holds and if it is during the school year our family will once again be split apart as Marshall will not make the trip with us and he will have to stay here with Ty who will need to stay here to work in order for us to keep the Insurance, how ever sucky it is we still need it! Anyway below is a post with most of the info on it from one of my really good friends!! If you could pass it on that would be great too!

Amelia's Ball

Dear Potential Sponsors and Guests,

This year is a very critical year in the life of Amelia. Amelia Bennett was born with a very rare terminal illness called Fanconi Anemia. Due to this, she is a very sick 9 year old girl in need of our help. Amelia can longer be the active, courageous little girl she is because of her failing bone marrow which causes her platelets to be at dangerous levels. Everyone that meets this little angel can’t help but smile. I am honored to be one of the many people involved in helping Amelia achieve getting her Bone Marrow Transplant.

Amelia’s Ball an Amazing Fundraiser will be held Saturday June 27th 2009 7pm at, Culinaria: 1519 Carondelet Street New Orleans 70130, and will include:
• Jake Smith Band, Harvey Jesus and other local musicians
• Photo Booth
• Food donated by local area restaurants, including Voodoo BBQ and Grill, and Gumbo Shop
• Beer and wine
• Silent auction
• Tickets to attend are $40.00/person
• Dressy Casual Attire
We are also looking for additional donations and any other services.
Donations can be made payable to Amelia Bennett
Please do not hesitate to contact us if you have any questions. If you are interested, please donate whatever you can to help. Thank you again for your support in helping Amelia have a fighting chance to ride her bike, play soccer, and go skating with her friends. You can learn more about Fanconi at www.fanconi.org.

Kind Regards,

Erica Smith & Heather Lang
Coordinator & Coordinator
Cell 504-338-3794 Hether's Cell 504-382-8659
eschwartz27@yahoo.com (Erica's) or (Heather's) hslang@charter.net

Thanks every one!!

just and up date of boring proportions....

I know its only been three weeks, but I am so ready for school to start again! No they are not driving me crazy, I think I am driving my self crazy trying to keep them busy!! I don't want to hear I am bored any more!! They are. at the present time, trying to entertain themselves, and it is not a pretty sight... Today was Marshall's IVIG day and I had to juggle all three of them for a while this morning till Ty got off of his detail then I dropped them off to him...but when I got home...OMG Nathan had gotten into the markers, yes again. I wasn't able to get a great picture of him because he was running away but he had it all over his lips and eyes and then he raised up hid shirt and had.....a bra drawn on him!!! The kid is truly a nut and never a dull moment with him around!! Here is the only picture I was able to get of him:

Here is a picture of Amelia and her puppy Chico.

I just like routine and in the summer there is no routine. The kids run wild, well one of them any way!

Amelia is starting to feel much better, but now Nathan sounds like he is getting it, he just got over a touch of a stomach bug.

Although I am glad at the present time that our lives are boring...I just hate hearing it from the kids. Umm like 500 times a day and they are never happy with what you suggest...well, Amelia any way she thinks I was put here to entertain her!

Next week if she is back to 100% we will be going to get her blood work done, I pray that those pesky platelets are up or staying the same!!!!

I have not recipes for Taste Tuesday as I have not been cooking that much and when I do I for get to take pictures of it....I will try to get my head right.

The rest of this week we have no plans, I might try to take them out to my parents house so that they can swim if Nathan is feeling better...Ty is off Friday and I think we are going to go to the Y and after we both work out we are going to take them swimming there too.

We really need to head to Sam's one of these days as we are in serious need of food!!

OK now I am rambling and I am hearing kids telling me that they are bored!! SO I need to run I'll try to catch up with ya later!

HAPPY BIRTHDAY AMELIA!!!!

Well it is officially June 7th..so that means it is Amelia's birthday.....Oh my how time flies, I can't believe it has been 9 years ago since she enter the world. She enter like a ball of fire as she is still that today!

She is my true angel, she is my world and there is not a single person that she meets that she does not truly touch their heart in some way. I could not be prouder of her she is the best child anyone could ever ask for, her heart is a big as she is....

Amelia Angelica Bennett entered this world at 8:33 am on June 7, 2000...her name Amelia means hard working, and Angelica means angel like...so she is our hard working angel!

So here's to you my sweet baby girl...Mommy and Daddy love you more than life it self and our prayer for you this birthday is that you have many many more!

HAPPY BIRTHDAY MIMI!!!! (my mini me)

UPDATE...

Ok as promised, I'm getting back here to update on Amelia and Nate. Picked them up from VBS, which I must say they are have a blast at and in a few week another church across from ours is having VBS with a crocodile theme and Nathan saw that on the way to the doctors today and went wild! He is ready to go there. Any way I brought them to McDonald's after for a little lunch. I ran into a friend from Jr high school, it was great to catch up.
Anyway to the doctor we went...she is too sick to get a vein stick to check platelets this week...we did do a finger stick and her platelets were still 27, we will wait till next week and get her blood work done if she is better. The verdict on her is that she has that stupid sinus infection again that has moved into both of her eyes, poor thing has such a hard time seeing in the morning. Her eyes are usually swollen shut...but once I put the eye drops in she is usually OK.
Nathan is not as bad as her..yet, Dr. Casey gave me some Rxs for Nate but said to hold on to them and if he gets worse then fill them. His immune system is up to par and should be able to fight this off better than hers.
It is also that time of year, the time that I dread the most!!! I need to contact Ochsners and see if they still have a hematologist available to do her yearly Bone Marrow Biopsy, we are going to do it some time in July this year that way she will have time to heal from it before school starts. I need to start working on it now though as some of her marrow needs to be sent to Minneapolis and they have to coordinate with their lab. I am just praying that they still have Dr Ducos for us, because I really don't feel like: A) going to Children's hospital...or B) taking a trip to Minneapolis...because if that is the case I AM NOT DRIVING!! Maybe Mimi and I can make a girls trip and fly just the 2 of us, although I know that dad won't be happy with that as he hates to send us that far away with out him to be there for both her and I! But I'm getting a head of my self so I will start next week with trying to set that up here...With all the new research that has just come about in FA research where they are using the patients own skin cells for transplant, Of course it is still a few years out....But I pray there are no abnormalities in her marrow and NO CHROMOSOME 7 abnormality!!! I need to keep thinking happy thoughts, and keep her here for as long as we can!! I still hope and pray we don't have to go to Minneapolis for the winter!!!
I also try very hard not to think about the ever present obvious, the seriousness of her disease and how dangerous a transplant is especially for her as she is so tiny and only has one kidney...you will never know how my heart aches, I just can't imagine my life with out her. I have accepted that, that is a possibility, but of course I am not prepares nor will I ever think I will be prepared for it...
Anyway I think I have rambled enough for tonight...but sometimes you just gotta let it out. So please keep her in your prayers, that she may fight this infection and that it doesn't bring her counts down any lower!!
I would like to try and promise to update again soon, but I have learned not to promise anything...I will though try my best to update on Saturday as Sunday is Amelia's 9th birthday!!!I cannot believe she is 9 already where does the time go?


PS I also hope to be back with Tasty Tuesdays soon too! and some new pictures too....

Neglect

I know that I have neglected this site and I promise to be back soon...but for now I need to ask for a little bit of prayers for Amelia...she is going to the Doctor this afternoon and she is not feeling very well at all...she has not been sick in quite a while and this seems to be really bad both eyes are swollen and yucky her throat hurts she is coughing and a yucky nose! And her birthday is Sunday and she wanted to have a pool party, but it doesn't look like its gonna happen!!! I'll up date as soon as I get back with them!