Nov 20, 2008

Great news, dishes and shopping!!

She even puts them on the counter!

Mommy's little helper! She has always
loved helping me with the dishes!

What is it with kids and baskets? I don't
Know but it sure makes for a cute picture!

This is how I found Ayla and her "friends"
one afternoon after a nap. They are all
lined up perfectly watching television.
I Love my brother!

I can do it!!
First of all I just want to say that Ayla is doing awesome! She is running around, playing, laughing and acting silly! Just two nights ago John said, "look, she is acting like a normal two year old". She is jumping (with both feet off the ground) something she has never been able to do and doing flip flops all over the floor, it is so amazing to see her doing all of these new things. Her neck is doing great, she is turning it without a problem, I am just thrilled as you can probably tell by this post. It is a double edged sword though I have to admit, I feel like we have been robbed of one whole year. One whole year of crying, pain and not feeling well...but I will try not to complain..... It really is amazing the difference we are seeing in her. I know that steroids have helped, but maybe the methotrexate has started to help as well. Her next appointment is December 5th so we will see what the PR says...she will probably want to start weaning Ayla off of the Pred to see if the mtx is working.
I have posted a few pictures tonight, because it has been a while since I have posted any.
The kids are both into climbing right now...they climb on anything and everything, today I found both of them on top of the sub woofer in our living room. Needless to say I unplugged it and it is gone. Ayla has also been climbing on our bar stool in the kitchen so we had to put that up as well. The other day she was playing in her room and she came running out saying "I did it, I did it", and I said you did what Ayla and she took me to her room and showed me. She pulled her potty chair(which she never uses) up to her door, stepped on top of it and turned her light off.. she was so proud!!
Lately, Ayla and Brennan have been going into Ayla's room to play. She loves getting him to follow her into her room. We decided to get a video monitor so that we could watch them because every once in a while, Ayla will push Brennan down, you know totally an accident I'm course we have had the monitor for a few days now and guess where they go to play.. yep that's right, now they go to Brennan's room to play. So last night they were in his room playing and next thing I hear is Brennan screaming. I don't know what happened but Brennan had a huge and I mean huge bump protruding from his forehead. Ayla kept saying "he fall down" um hum wonder how that happened? Needless to say, no more alone play time for them!
Lastly, if you have a little girl and you love custom clothing like I do, then please check out the link on my left side bar or visit This designer sells on ebay, etsy and on her web site. Her designs are gorgeous so go and check them out. She is having a huge sale on black Friday, November the 28 and is giving away prizes all day long every hour.
We have lab work tomorrow, so I will keep everyone posted on how that goes!

Nov 14, 2008


It has been a little over one week since Ayla started on Prednisone and the results have been great so far. Her joints are still swollen, but overall she does not act like she is in pain and for the first time in a long time, it doesn't take her thirty minutes in the morning before she will start walking. Her face is a little puffy from the steroid but I guess that is a minor detail when looking at the larger picture.
It is still not easy giving her five medicines at three different times a day but this is "Our Life" now and is all Ayla has ever known. When she first started on the Naproxen eight months ago, I would coerce her with a sucker so that she would take it. I was having a problem with her taking the Prednisone and Zantac after lunch and a sucker was not doing the trick, so I offered her m&m'S and it is working like a charm. This is the first time she has ever had m&m's and she of course loves them. She only gets three, but sometimes I have to admit that I give in and give her five..or so... I know what a terrible mom!!
This Saturday will be her fourth dose of Methotrexate, I am hoping that we will see some results soon. The holidays are fast approaching us and I would love to see her feeling well and enjoying the holidays. I am excited and looking forward to Thanksgiving and Christmas, but I will also be excited to put this year behind us and start a new year. This year has been full of heartache after heartache, appointments after appointments, medicines and more medicines, months of physical therapy, countless times of blood work, x-rays... you name it we have done it. Hopefully a new year will be a new beginning for our little Ayla! As Kate says on the TLC show John and Kate plus eight... it may be a crazy life, but "It is our life!"

Nov 7, 2008

Brennan's one year appointment!

Today was Brennan's one year old well child visit. Everything went great. Except for a little reflux, he continues to thrive weighing in at a healthy 22 pounds and 30 inches long. He is only 4 pounds lighter than his two year old sister!! Of course she is on the small side for her age. I am going to start him on prevacid for his reflux so hopefully that will help. I decided to skip his one year immunizations and only give him the flu shot. John and I have been struggling with whether or not to have him vaccinated and we just decided that right now we will wait. We have went over and over in our minds of when Ayla started feeling bad and we know that she was well and healthy until she had her one year immunizations. After that she never felt well again. I am not saying that the MMR or any other vaccines caused her JRA, but it does make you think. Anyway, with the rise of autism in kids and the more I read about vaccinations, I just want to wait until he gets a little bigger. The doctor was very understanding about it and she said I could even wait until he starts school to get him immunized. With me staying at home with him, it turns out it really is no big deal!! What a relief for me!


Nine-year-old Jacob Martin of Dracut, Mass., has trouble sitting still during group time in class.At first glance, this may not seem out of the ordinary. But while Jacob appears to be a typically restless fourth-grader, his experience stems from a condition that is more commonly associated with his grandparents. Jacob has arthritis.
Jacob's legs stiffen and swell as a result of polysystemic juvenile rheumatoid arthritis, a kind of arthritis that causes damage to numerous joints and tissues in children. But his mother Joanne Martin said he refuses to tell his teacher that he feels uncomfortable and endures the pain anyway."Anytime the situation comes up, I tell him it is OK if the other kids know," Martin said. "But he doesn't want to be the center of attention."Jacob is one out of an estimated 294,000 children in the United States who have been diagnosed with a rheumatologic condition, according to a 2007 study by the U.S. Centers for Disease Control and Prevention in Atlanta. And, like Jacob, some children choose to keep silent about their diagnosis.The exact causes of juvenile arthritis remain unclear, but researchers believe that like its adult counterpart, the condition arises when the body's immune system malfunctions, damaging the body's own tissues. In many cases, effective treatment is available in the form of anti-inflammatory medication, physical therapy and exercise.But unfortunately, while children were once thought to outgrow the condition, evidence suggests that the disease may recur and endure long into adulthood, said Dr. Egla Rabinovich, co-chief of pediatric rheumatology at Duke University in Durham, N.C.Lying to Keep the SecretAlthough some of these children use secrecy as a tactic to feel normal, Rabinovich said, those who keep it to themselves may, ironically, find themselves feeling socially isolated."Kids can be very secretive about their diagnosis," Rabinovich said. "They may lie to their friends about why they cannot participate in physical activities, and eventually one lie can lead to the next lie."Dr. Robert Sundel, director of rheumatology at Children's Hospital Boston, said parents should leave it up to the child to disclose their diagnosis to their friends."Initially, they need to accept it first, but the reality is it can be months or years that they won't want to share with anyone," Sundel said.Elizabeth Murphy-Melas, author of the children's book "Keeping a Secret: A Story About Juvenile Rheumatoid Arthritis," said, "A hurdle children with arthritis have is acceptance [by others and of themselves] while maintaining self-esteem."In her book, the main character, Jennifer, learns she has juvenile rheumatoid arthritis after she finds herself struggling to play soccer. Despite her mother's encouragement, she hides her diagnosis from her friends, and instead lies about her condition. But Jennifer is relieved when she is finally able to reveal why she is not able to participate in physical activities with her friends.Murphy-Melas said that while the use of excuses may be one way to keep a secret, her book is about the stages a child may go through in accepting his or her diagnosis."Jennifer waited and told her condition on her own terms," Murphy-Melas said. "Children with arthritis should be able to tell friends about the disease when they're ready, and on their own terms."Finding Someone to TellAs debilitating as juvenile rheumatoid arthritis can be for a child, some learn to overcome their silence about their diagnosis with the help of their parents who have also been diagnosed with rheumatoid arthritis. Although exact numbers are unknown, a minority of children with arthritis have a parent who is also affected, Duke's Rabinovich said.But such is the case with 15-year-old Oscar Seman, who has polysystemic juvenile rheumatoid arthritis and whose mother Pam Seman, 48, of West Hills, Calif., also has rheumatoid arthritis. Seman said her son, who was diagnosed three years ago, is selective with whom he shares his diagnosis because he fears some will not believe him."Oscar will run, ride a bike and play with his friends," she said. "When I pick him up, he will try hiding his limp to the car and he will cry afterwards because he is in such pain."
Seman said she understands that her son may feel excluded from other teenagers because of his arthritis. Seman, who was diagnosed in her 20s, also tried not to let her arthritis limit her physical activity. She sometimes ignored symptoms and would skip taking her medications.While the long-term effects of those who keep their diagnosis a secret have not been studied, Rabinovich said that in her experience, those individuals are more likely to ignore medication and perhaps other recommended treatment."Today, juvenile arthritis is manageable in that children with arthritis are physically indistinguishable from others," Rabinovich said. "Those who are in denial of their diagnosis will miss opportunities to help themselves."Rheumatologist Sundel agreed, adding that arthritis treatment has helped children overcome the physical differences of the condition."Usually, within six to 12 months, some cases of newly diagnosed arthritis are controlled," Sundel said. "So keeping it a secret in the beginning may not have any physical ramifications in the long run."Although Oscar does not respond to his doctor's recommendation to communicate his diagnosis with others, Seman said her son has now opened up about his experiences with her."With Oscar I would say it helps him that I have it, too," she said. "Because he sees in me what it will be like in the future -- I am living with it and I'm doing OK -- he'll talk to me about that."While talking to a parent may be one step toward accepting the disease, Rabinovich said communicating with a close friend in the child's age group will offer another level of understanding, both from the peer and affected child."In general, the message is that secrets lead to bigger secrets and a child can find themselves very isolated without support for their condition, Rabinovich said, adding: "I think they would be surprised how much support their friends would give them if they only knew."Copyright © 2008 ABC News Internet Ventures

Nov 5, 2008

And On A Lighter Note...............


Well this is how I DO IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

A VACUUM!! Yes that's right, A simple vacuum
will do the trick! Okay here is the story. My sweet precious one year old Brennan loves to play a game in the mornings where he runs down the hall and I go chasing after him. He thinks this is so funny and will do it over and over and over again. If I do not go chasing after him, he goes bursting into his sleeping sisters room and wakes her up. This is not good because if you wake her up before she is ready,she is extra crabby!! So after doing this a few hundred times, I kept thinking of ways I could keep Brennan from running down the hall. A gate would have been good, but I did not have one. But what I DID have
was a vacuum cleaner in which Brennan will not go near! hmmm would this work I thought? Is this a mean thing to do? Well I thought it was worth a try and yesterday I put the good old vacuum cleaner in the hallway and I am happy to say that Brennan did not run down the hallway one time...hehehe!!!!!!
Okay this is an update to my update yesterday! While we were at the hospital waiting to get x-rays, John noticed that Ayla's left knee was swollen and hot. I know she hasn't been feeling well lately but I think I am in shock right now. I can't believe that two more joints are involved. She also tells me everyday that her fingers hurt. It makes me sick to my stomach.
As far as the x-rays go, Ayla was not having any part of it. She screamed and cried the whole time and they only got one x-ray. John told them that he was not going to force her and that was that. I don't know that x-rays are of the utmost importance right now anyway.
I called the Dr. yesterday and told her about Ayla's swollen knee and toe. I was wondering if we should increase the Naproxen dose since these two joints popped up after we decreased the naproxen dose. She assured me that decreasing the naproxen dose had nothing to do with it. She said that it was just the progression of the disease. She did not want to increase the dose, because Ayla has been getting the maxium dose for almost 8 months now. She is worried about the possibility of bleeding and the fact that her hemoglobin is so low. She wants to start Ayla on a low dose of steroid until the methotrexate starts working, and hopefully it does! Ayla will also have to take zantac with this because of the possibility of it upsetting her stomach. So we are up to five medicines now. I am beginning to wonder if this will ever stop. John and I are both really stressed out about this. We just want our daughter to feel good. She has not felt well for so long. We both cried yesterday because it just hurts so much seeing your child in pain and complaining everyday. I am sure that it affects us way more than it does her. I mean she will never remember this right? I have to get Ayla's blood work done again next week and we will go to Cincinnati in another three weeks. Please keep Ayla in your thoughts and prayers.
Ayla's current meds
Naproxen 125 mg/5ml 1 tsp 2 x day
Methotrexate .3ml 1x weekley
Folic Acid 1mg tablet 1x day
Prednisolone 15mg/5 ml 2ml 1x day
Ranitidine 15mg/ml 1.6ml 1x day
Multivitamin 1x day

Nov 4, 2008

Ayla Update

Unfortunately, this is not a good update. Since we decreased Ayla's naproxen dosage a couple of weeks ago, she has been complaining almost every day of her foot and fingers hurting. On Sunday we discovered that her third toe on her left foot is swollen. Now the top of her foot is swollen, John said that her metatarsal joint is inflammed. We are both sick to think about it. If you remember, all of her other affected joints have been on the right side, this is the first joint on the left side that has been affected. I remember the other day when we were putting her left shoe on, she kept saying it hurt, I couldn't figure out why because only her right foot had been hurting up until now. I have a call in to the Dr. to see if we can increase her Naproxen dose again until the Methotrexate has a chance to work. Ayla just received her second dose on Saturday evening. Today I am taking her in for her x-rays. This is very upsetting for John and I . I just can't hardly think about it without crying. I just want her to be a healthy two year old like she is supposed to be!