May 30, 2009

I guess it's time for Enbrel...

May 09 006

Just as I thought, the doctor thinks that we need to treat Ayla's arthritis "aggressively". He has no doubts that she should start on Enbrel. Why? well because Ayla has been on one or more medications since she was diagnosed last year in March 08. After one year of being on Naproxen for 6 months, oral Methotrexate for 2 months, injectable Methotrexate for 2 months, oral steroid, prednisone for 5 months and three steroid joint injections, she still has a swollen left knee, right ankle, right elbow, arthritis in her jaw, neck and just yesterday the doctor told us that it seems like she has it in both of her hips now. Great! As I mentioned before, her sed rate is 69 (the highest it has ever been) and her CRP level is increased as well. This tells us that the Methotrexate is not working , we would have already seen a difference if it were. The next drug used to treat JRA when Methotrexate does not work is Enbrel. So far this is my understanding of Enbrel and how it works related to JRA.

In 1999, ENBREL became the first biologic medicine approved to treat moderate to severe JRA. ENBREL is a targeted treatment and can work selectively by affecting tumor necrosis factor (TNF) levels. TNF, a natural part of the immune system, is a messenger involved in the inflammatory process of JRA.

ENBREL is indicated for reducing signs and symptoms of moderately to severely active polyarticular juvenile idiopathic arthritis (JRA) in children ages 2 years and older.

Because of the effects on the immune system, ENBREL can lower the ability of the immune system to fight infections and can raise important safety considerations .Serious infections have happened in patients taking ENBREL. These infections include, tuberculosis, and infections caused by viruses, fungi or bacteria that have spread throughout the body.

In a medical study, ENBREL was shown to be effective in about 3 out of 4 children with JRA who used it. For these JRA patients, ENBREL has been shown to begin working in approximately 2 to 4 weeks.

In a medical study of patients with JRA, infection, headache, abdominal pain, vomiting, and nausea occurred more frequently than in adults. The kinds of infections reported were generally mild and similar to those usually seen in children. Other serious adverse reactions were reported, including serious infection and depression/personality disorder.

May 09 016

The Food and Drug Administration (FDA) issued an early communication on June4, 2008 regarding an ongoing safety review of Tumor Necrosis Factor (TNF)Blockers (marketed as Remicade, Enbrel, Humira, and Cimzia) and the possible association between the use of these medicines and the development of lymphoma and other cancers in children and young adults

Here is the link if you would like to read it. Even though it is in the back of my mind, I try not to think about that because right now our focus is getting Ayla into remission so she will not have irreversible joint damage in the future.

May 09 002

So we are hoping that Enbrel will be the answer to our prayers. Ayla and I pray every night that her arthritis will go into remission. Although she is only 2 1/2, she knows that she has "arfritis" as she calls it and it is normal for her to take medicine everyday. Sadly, it is all she knows. She knows about her injections, she says she is getting medicine in her leg to help her "arfritis". She knows that Brennan does NOT get medicine because he does NOT have "arfritis". She knows the difference between the medicine bottles and which one is for her belly, which one is for athritis, etc.. I truly believe this disease will help her grow into a strong young lady!!

As for now, we still have to give the methotrexate in addition to the enbrel . That will be two weekly injections for her. In time, we should be able to discontinue the methotrexate.


This is a picture of Ayla last year right before our very FIRST rheumatology visit. This was the day of her "official diagnosis". It's hard to believe how little she was and how much she has grown over the year.


We will not stop battling this disease, we ARE going to beat it no matter WHAT gets in our way!

"JRA is not just a child's disease. For every kid with JRA, there's a family living right alongside—helping that child manage the pain and stiffness. Being the parent of a child with JRA can be an overwhelming responsibility. You have to make decisions that affect your child's life."

May 28, 2009

Show Us Where You Live Friday- Kids Rooms

It is Friday already and this week at Kelly's Corner it is time to tour children's bedroom's/nursery.

This is Ayla's room, we actually have not changed anything since she was born. Since she is still in her crib, I am going to wait until she is in her big girl bed before I change anything. I have seen the cutest little girl bedding at Homegoods lately but I am not going to rush anything. I will let her sleep in her crib until she can no longer move she outgrows it!!

My husband got a little carried away with wanting to keep "toys" off of the floor and so he put some hooks on the wall to hang the bigger toys. It doesn't look all that great but it gets the job done!

Her name on the wall behind the bed was the first thing that we "made" for her room. John also painted some patterns on the wall that matched her baby bedding but after we put all of the furniture in, well you really couldn't see much of it.
Anyway, Ayla loves all of her butterflies (which she calls "fireflies") hanging from the ceiling

Everything turned out really cute, but I am anxious to get rid of the shelves and put some paintings day!!





Yes I know, I have a problem with buying clothes.... my husband tells me all of the time!! So that is it for Ayla's room

And this is Brennan's room

To be honest with you, Brennan's room was not even finished before he was born. Since Ayla was a baby throughout my pregnancy with him and since I am sick as a dog when I am pregnant, the room was the last thing to be done.

We didn't even paint, we planned on painting some road lines and racing designs on the walls but we never got around to it. Hopefully we will be able to do that in the future. John did everything in this room, if you haven't figured it out, he is a huge fan of cars, "fast cars" to be exact. There was no question what this room would look like..ha!

All of the antique toys hanging from the ceiling and on the shelves (sorry honey) are my husband's when he was a little boy. The hot wheels cars on the shelves are his as well! The drawing of the Mustang on the wall was done by my husband so we decided to hang it in his room.

Thank goodness Brennan loves cars! But I really don't think he has much of a choice!!!


I wasn't going to show this picture of the closet because it is SO MESSY, but I am just keeping it real ya'll!!!!

Hope you enjoyed the rooms, have a great weekend everyone!!!

May 27, 2009

Bad News....


Ayla's lab work came back today and it wasn't good at all. This is the first time we have had it drawn since she has been off of her steroids (prednisone). While she was on the prednisone, her sed rate was normal which is 0-10. We had high hopes that it would still be normal today. As it turned out, that was not the case, her sed rate today was 69. Just a reminder, the sed rate is an inflammation marker that is used (in our case) to see how well the arthritis is being controlled. With a high result of 69, it is obviously not well controlled as of now.

Of course we have seen a difference with her being on prednisone and now that she is off, but it is always in the back of your mind, "well maybe she is not that bad". I guess denial still creeps in every once in a while.

The biggest difference we have seen in the last couple of weeks is her not being able to turn her head to the right. Her left knee and right elbow are still swollen as well. She also has arthritis in her jaw that has caused her to have TMJ and that is still pretty noticeable. Since she has been on injectable Methotrexate for a couple of months now I am almost certain that her Rheumatologist will want to start her on Enbrel, which is another injection. We have talked about it in the past so it is not a complete shock. Of course I am not happy with the idea, but I have had time to prepare myself...somewhat...Anywho, we are driving 3 1/2 hours on Friday to see her Pediatric Rheumatologist, I will keep everyone updated on what our next course of treatment will be.

May 26, 2009

A Whole Lot About Nothing.....

This post is a little bit of this and a little bit of that and a whole lot of nothing...hehe


First of all I just wanted to say that I was so MAD upset a couple of weeks ago when my favorite Danny Gokey was voted off of American Idol. I LOVED his voice, it is so unique and he is also a Christian and leads worship music at his church. Here is a video of him singing "You are so beautiful"- love it.

I thought for sure he was going to make it to the final two with Adam Lambert. As it turns out, Adam and Chris Allen made it to the finals and I was so bitter that I decided not to vote AT ALL. At that point I really didn't care who won because my favorite was already gone. Of course everyone knows that Chris Allen won and soon after I found out that he is a Christian also and I found this video of him leading worship at his church.

Needless to say, I felt very bad and was mad at myself for not voting for Chris! I even got a little teary eyed watching this video. He is also an amazing person and I am Very glad that he won American Idol. As a matter of fact, I saw this on Kelly's blog and thought I would share it with you. Here is what she wrote about Chris Allen and this video of him singing God in this city.

" I'm sure if he would have sang this (and I wish he could have) - Simon and Randy would have been like "Dog - I don't get that song at ALL". "Bad song choice". One of my college friends told me her mom and Kris' mom are friends and that he had told his mom before he got to the final that he needed one more week there because he had been witnessing to Adam and felt like he needed just a little more time with him.That's the kind of American Idol I can be proud of. No person is perfect and we should never idolize anyone but God because every human will let us down. Your pastor, Billy Graham, Beth Moore, Chris Tomlin, your Sunday School teacher - they are all sinners and come short of the glory of God. He alone is Holy."

Moving on to " The Biggest Loser", another one of my favorite reality shows. Is it me or does anyone else think that "Helen" the winner looks anorexic??

the biggest loser

I was appauled at the way she looked and thought that she looked very unhealthy. She weighed 117 pounds at the finale. Seriously, who weighs 117 pounds?? It looks as though she starved herself to win, no, not a fan of that!! I think that Tara or Mike deserved to win, they also lost alot of weight, and looked very healthy.. very disappointing BIGGEST LOSER!!

Okay, I could move on to the Bachelorette, but I will save that for another day!!!

Here at home we have been doing a whole lot of playing outside



waiting for the pools to open and waiting on THIS

little tikes

We ordered it for the Kid's last week and I can't wait to get it up so they can play on it. I have been looking for the perfect swingset for them and I ended up choosing this one!!

Okay, well this concludes my very long post about a whole lot of NOTHING!!

Beautiful, Beautiful, Beautiful, Beautiful BOY!

beautiful baby

Beautiful, Beautiful, Beautiful, Beautiful Boy, is a song by Celiene Dion. It is on her "Miracle" album and I listened to it ALOT when I was pregnant with Ayla and Brennan. It has beautiful lullaby's on it and is one of my favorites! Anyway, Brennan is my beautiful boy and he is in a beautiful baby contest!!

So with that being said, I am begging asking you nicely to please vote here for my Beautiful Baby "Brennan" who is number 12 on the website. Unfortunately they did not include the names only numbers. If for some reason the link is not working, just go to and in the right hand corner there is a tab that says beautiful baby contest. Just click there and it will take you directly to the voting site.

I really appreciate you voting, as it only allows you to vote once per computer. I am trying to spread the word, voting is over on the 31st. If we would happen to win (fingers crossed) we would win two thousand dollar's worth of portraits from the fabulous studio that took this picture above. Masterpiece studio is awesome and all of their portraits look like artwork when they are finished. I have always wanted to get the kids pictures done there but they are SOOO expensive and we really can't afford it. So this would be such a treat if we were to win!!

Thank you so much for voting, my beautiful BOY and I apprecitate it very much!!!!

May 22, 2009

Show Us Where You Live Dining Rooms

It's Friday again and time for show us where you live Friday. This Friday is dining rooms so head on over to Kelly's Corner and check out all of the other great dining rooms.

This is our dining room looking in from the kitchen. This is a small area but it works perfect for us! This was actually our living area before we added on to our house two years ago! Can you imagine two babies and all that comes along with it in this tiny space?? My husband just added the light a few weeks ago. I love it and it adds so much to the room!! I also am very happy with our dining room table. We got it a couple of years ago and it is perfect for us. We did not want anything formal, we love the pull out bench that this has!

We bought the rocking chair when Brennan was born, I wasn't sure about putting it there at first but it has grown on me and I like it now. Since my babies are growing, it will probably not be there for too much longer :(

I am looking to do something new with this sofa table, I would like to have some other decorative items on top so if you have any suggestions, lay them on me!!!!

The only thing we HAVE to keep is the carved wooden fish, my husband and I got this on our honeymoon to Jamaica. I know it is not that appealing but it works!!
These are my babies!!!

I would also like to do something with the ledge on the right. It is so plain and I just don't know what to put there. Any more ideas???

Okay, that is it. A very simple and little space, just the way I like it!! I am off now to look at everyone else's dining room!!

May 12, 2009

Mother's Day Weekend

mothers day pics may 09 029

First of all I just want to say that I hope everyone had a great Mother's Day Weekend!! I myself had a WONDERFUL weekend!! The weather was perfect and we had no RAIN for a change. It has rained for the past TWO weeks here!
One of my friends let me know about this awesome place to go and get flowers (thank you Summer). It was on a farm and about 30 minutes away. This place was amazing. There were flowers, plants and trees EVERYWHERE. I am guessing there were around ten greenhouses and possibly more with flower baskets hanging everywhere. I picked out four baskets for our house and we also got a few Mother's day gifts for our Mother's as well.

mothers day pics may 09 023

I am planning on going back because there was SO much to look at and I just might have to get a few more flowers! I am hoping this will be a new Mother's day tradition for us. The kids loved it as well, when they weren't sitting in their stroller being the precious, sweet kids that they are, they were running in between the greenhouses. There were also cows there that Ayla called "camels". Yes, we really need to get that girl to a ZOO soon. Poor thing, she called the cows "elephants" when we went to Indiana last month!! Oh and she also called the lions, "kittens", at the circus. But I promise you, she really is SMART!!!

mothers day pics may 09 004mothers day pics may 09 005

This is off of the subject, but there was a worm on the porch a couple of days ago and it kept trying to get in the house so John picked it up on a stick and threw it into the yard. Later that day Ayla asked where the worm was. John told Ayla that the worm went BYE BYE. And Ayla replied,"did he go to work"-ha. I thought that was funny!!


Anyway, On Sunday we went to Grandma and Grandpa's. They bought the kids a sandbox and so they enjoyed playing outside the whole afternoon.



We actually were able to get some family pictures while we were there. I haven't had a picture with all three of my kids since Brennan was born!! Later that evening, my Mom and some friends were over for a cook out. It was such a good time, I spent the whole day with my Husband and chilren, I am so blessed to have such a wonderful family including my mom, she helps us out so much with the kids and I don't know what we would do without her!!


The one and ONLY picture I have of all three of my children!

My and my two boys!! Aren't they handsome!!

Kaleb and I

Ayla and her big brother

She loves him so much!!

And finally,
"The Family Picture"
I hope everyone had a happy Mother's Day!!!!!!!!!!