NEPHROTIC SYNDROME

Nephrotic syndrome is a nonspecific disorder in which the kidney are damaged, causing them to leak large amounts of protein (proteinuria at least 3.5 grams per day per 1.73m² body surface area) from the blood into the urine.
Kidneys affected by nephrotic syndrome have small pores in the podocytes, large enough to permit proteinuria (and subsequently hypoalbuminemia, because some of the protein albumin has gone from the blood to the urine) but not large enough to allow cells through (hence no hetmaturia).

This horrible definition is what my baby boy deals with everyday.  He was diagnosed on September 9, 2006 at the age of 8.  He had been retaining fluid but we had no idea what was causing it.  After seeing that it had gotten to a point that seemed dangerous I called the on call nurse at the doctors office.  She told me the most frightening thing a mother could hear, "Mam, either the valves to your sons heart have shut down or his kidneys have shut down.  I suggest you get to the hospital right away and I wouldn't just go to any hospital, you need to go to Texas Children's."  And, we were off.  I was scared out of my mind.  By the time we got to the hospital my son's privates were so full of fluid that they were transparent.  We were put in a room right away and immediately they started running test.  Within a hour they came in and said, "Mam, your son has Nephrotic Syndrome.  I am so sorry, we are admitting him and you will learn more within the next few days."  The only thing I could think of saying is, "Can you fix it?"  "No, we can treat it but there is no cure."  I had no emotion at that time.  I didn't want Tyler to see my fear. The next few days, weeks, months were a whirlwind full of educating, doctors visits, hospital stays and trial and error with medications. 

Tyler is now stable.  We know what we can and can not do.  It is a part of our everyday life.  Tyler stays on a 2g of sodium a day diet, 1L of fluids and lots of medication.  Tyler is what they call steriod dependent.  He is on a medication called cyclosporine which is supposed to be his daily maintainer medication.  He is also on predinisone.  He is supposed to only be on prednisone during a relapse and then tapper off of it as he goes into remission.  The problem is....his body relapses everytime we get on a low dose of predinisone.  So, everytime we think we are coming off this devil drug; we don't.  Prednisone causes puffy cheeks, weight gain, mood swings, and is just a horrible medicine for anyone to have to be on.  Tyler gets excited when we get to a lose dose of the prednisone because he starts to lose his cheeks, lose weight and feel more like himself again.  As you can imagine being in jr. high the kids are pretty critical of him changing.  It hurts my feelings because when he is low on prednisone and his weight is low, the girls flock over him and then he goes back up and he gains more weight and then all the girls just want to be "best friends".  Not to say that I want him to have girlfriends but you know as a mother it is heartbreaking.  Well, last week we were down to 20mg every other day, his puffy cheeks are gone, his weight is under control and we had been in remission for about six months. As of last Monday morning he has relapsed AGAIN.   Doctor originally started him back to just 20mg everyday and now we are back to 40mg everyday and I am sure soon we will be back up to 60mg.  This gets so frustrating.  I hate this for him!  But, such is life.  The more relapses he has the more damage that is done to the kidney and the closer we would be to a kidney transplant. 

Please join me in prayer that he goes back into remission soon and before we have to go back up anymore on the prednisone.  Kidney diesease is something that a lot of people do not acknowledge and most people do not realize how it effects people's everyday life.  Please become a supporter in the National Kidney Foundation and make kidney disease more visiable to people.  Help donate to find a cure!

Go to http://www.kidneywalk.org/ and follow the prompts to Houston Kidney Walk and to Team Tyler and sign up to walk with us today.  If you are not able to walk with us a simple donation would be wonderful!

BEATING NEPHROTIC SYNDROME ONE DAY AT A TIME!

Chuck E Cheese Birthday Party

Have any of you ever had a birthday party at Chuck E Cheese?  If you answer no, then I strongly suggest you do not.  Chuck E Cheese is fine for an afternoon delight but not a good idea for a birthday party.  I have three kids that I have been planning birthday parties for, for the last ten years and somehow I had managed to steer clear of Chuck E Cheese till now and it was a big mistake.  It was very last minute.  I am usually very on top of this birthday thing but this year I just could not get into the groove.  I really wanted to do it at the house but we just moved into our house a couple of months ago and I still do not have things the way that I really want them.  Then my oh so precious father in law had to have a quadruple bypass and ended up having a stroke while in surgery so that took a lot of our time and before I knew it the time was here to have a party and I had no plans.  So…Chuck E Cheese it was!

I am pretty critical of birthday parties.  I HATE going to a party where they let the kids play for hours before deciding to actually celebrate the birthday (cake and presents).  I want to get there and celebrate the birthday and then let the kids play.  I have three kids and an oh so busy life so as much as I want to spend hours visiting with my friends at birthday parties, I do not have time.  We are lucky if we make it to all of the birthdays.  So…anyway, Chuck E Cheese went totally against my thoughts on what a birthday party should be like.  They give you a two hour time slot.  The FIRST hour….PLAY TIME.  Second hour, birthday!  I was not happy!  My father in law is not doing too well but was determined to be at his granddaughter’s birthday party and he had to sit there for over an hour waiting on screaming obnoxious kids to play.  My sister had a soccer game but still wanted to come by for cake and presents…had to leave right  after we sang.  I don’t like that.  Then they do not let you just celebrate your child’s birthday, it has to be done as a group with six other birthday kids.  Call me selfish but this is the one day a year that it is ALL ABOUT MY CHILD!  I don’t want her to have to wait five minutes for Chuck E to get down there to see her because he has five other kids he is also dealing with.  Isn’t there a way they could stagger the times?   They do at all other birthday places.  So, after they sing and we wait on Chuck E and have cake there is this ticket machine and it has lots of tickets in it.  The child is supposed to get in this spaceship looking thing and this air comes on and blows the tickets everywhere and they are supposed to get as many tickets as they can as fast as they can.  BUT…you have to wait your turn with the other five kids.  So, we are waiting and every time they go to take her over there then someone else has cut so I ask the party hostess if we can go ahead and start presents because the kids are getting anxious at this time.  She agrees that is a good idea so off we go to open presents.  About half way through she comes over and says, “It is her turn in the ticket booth.”  I say, “Right now, right now? Or can we wait till we are finished?”  “No, right now!”  Yea…well,  no, I am not going to leave all these people just sitting there waiting while we walk across the restaurant to do this ticket thing and then expect to still have their attention when we get back.  Needless to say, Chuck E had to wait. 

Don’t get me wrong Ally had a great time but I was just not impressed with the organization of the party.  I won’t ever being doing Chuck E again.

Pictures to come soon…as soon as I can figure out how to do them!  LOL!  Feel free to leave me a comment on how to get them uploaded. ( Got It! )

Tell your friends about me and as soon as I have 20 followers I will be doing a giveaway on some sweet little girl items!

Ok..I am lost...trying to do a post with pictures and I can't seem to figure it out! Anyone wanna help?

So I Am Going To Give This A Try

I have been a lurker in the blog world for some time now.  I look at other people’s blogs daily.  I enjoy seeing what other moms go through with everyday life of children, I like to keep up with the progress of all the precious babies that I pray for nightly and I like to look at How To blogs for my home.  So...after many months, maybe years of lurking I figured I would try this out for myself.  I will probably need some help from you guys because really I have NO IDEA what I am doing.  I just know how to lurk.  I am honestly shocked that I have made it this far!

Let me start off by telling you a little bit about myself.  I am a wife, mother, daughter, sister, sister in law, daughter in law and friend!  I love everyone around me and I have a horrible time saying NO!  I married my best friend almost eight years ago and we still fall more in love with each other every day.  God has tested us every way he knows how and we have continued to fight through it and our relationship continues to get stronger with each test.  I am a mother of three (sometimes four and for that matter sometimes fifty)!  Hunter will be fifteen in two weeks and is an angel child, a child that everyone dreams of having.  He has always been a top student with high grades and wonderful conduct.  We recently received his transcript and he is ranked 40 out of 626 kids in the freshman class at La Porte High School and he has a 4.8 GPA.  See...I told you...he's an angel.  He is on the high school football team and really enjoys it.  Our family lives for football and we wrap our whole hearts and souls around it. Tyler is twelve and is a sports fanatic!  He sleeps, eats, drinks, breathes, snores sports!  LOL!  He plays football and baseball and loves it.  He can tell you just about every stat for every pro player on every team.  He has struggled in school before just because he was bored but has hit a maturity level that has corrected that problem and now is a very good student as well.  Tyler has had a lot of struggles as he has Minimal Change Disease Nephrotic Syndrome.  Nephrotic Syndrome is an auto-immune disease that attacks the kidneys.  You will hear me speak of this a lot as it is a part of our everyday life.  I am an avid supporter of the National Kidney Foundation and I will be walking in the Houston Kidney Walk on April 30, 2011.  If you would like to make a donation towards Team Tyler or would like to join our walk please go to http://www.kidneywalk.org/ and follow the links to the Houston Kidney Walk and then go to TEAM TYLER!  Through the struggles Tyler has handled himself very well and continues to push through everything this disease tries to hand him!  He has the biggest heart and is a wonderful big brother.  Hunter and Tyler are my husband, Sparky’s boys and I was blessed to be able to raise them as my own since they were two and four years old.  I thank God for this blessing all the time.  I don’t know what life would be like without my boys.  They also have a big sister, Alyssa, who does not live with us. She is actually my husband’s ex-wife’s daughter but my husband has played a very big role in her life.  She is seventeen and a very good, sweet, kind-hearted young lady.  I love being able to get with her and have some girl talk time. Then we have our little Princess Ally.  Ally is our little princess that just turned four on Sunday.  She keeps everyone laughing in our home and keeps everyday interesting.  She has a very strong personality and is a little girl who truly just enjoys life.  She acts a lot older than most four year olds in many ways but is very much a baby as well.  She was my paci baby and we could not kick the paci.  At midnight on her fourth birthday the paci monsters came in our house and stole all of the paci’s.  She also was a co-sleeper which I was perfectly happy with (she cuddles) but Daddy was not.  So last week we also started putting her in her own room to sleep but we welcomed her as soon as she woke up in the middle of the night to get in bed with us.  I am happy (well sad) to announce that last night she slept all night in her own bed without a paci.  I am very proud of my big girl. 

So there you got it.  A little about me…you will learn a little more everyday and I am very excited about this adventure that I am starting! 

Off to baseball practice for Ally and then we will catch up with the rest of the family at Tyler’s game!  Baseball season is in full swing!