Ayla's Rheumatology appointment and EXCITING NEWS!

Ok, wow, I realize that it has been too long in between posts but this Winter has really been bad for us. With the exception of the last two weeks, someone in our family has been sick (including myself) for the past 8 weeks! We have had the flu, croup, respiratory infections, strep throat, stomach virus... you name it and someone in my house has had it. I am so ready for the warm weather to get here, it can't come soon enough :)



Ayla had her Rheumatology appointment a few weeks ago. She was actually excited to go so she could give Dr. Huggins a Valentine treat! Ayla made her a card and took her candy. She really likes Dr. Huggins and has always felt comfortable with her. We are so blessed to have such a great provider for her. I honestly can not say enough for Cincinnati Children's Hospital, it is a WONDER facility and I am so thankful for the care that we receive there! I just wish it were not almost 4 hours away :( it makes for a long day that's for sure!




Ayla's appointment went well. She is still doing well and her labs look great so we decided to start decreasing her Methotrexate. If all goes as planned, she should be off of it by August when she starts Pre-School! She is and will still be on Enbrel for at least another year, she still complains of neck pain occasionally, but at least we are headed in the right direction!


So for the exciting news, this Month marks the third year since Ayla was diagnosed. One of the first things I did when she was diagnosed was check into seeing if our area had a local Arthritis Walk. I was so eager to advocate and raise awareness for this disease, most people do not know that Kids can get Arthritis too! I was upset to learn that my state did NOT have a walk nor did we have a local Arthritis Chapter. I called the nearest chapter and discussed starting a walk with the person who is over the walks. She encouraged me to try and get a committee together and to actually start one in my area. I was excited about this opportunity but was let down pretty quickly. I could not get enough people interested and it was such an overwhelming task for me because Ayla was not yet in remission and less than two years old and Brennan was only a few months old. I decided that I would have to wait until there was a better time.

(This is Ayla on the day of diagnoses, three years ago, so precious!)



So out of the blue a couple of weeks ago I get an email from a local young lady wanting to know if I was interested in helping her with getting an Arthritis Walk together. What? Really? I was so excited and what an answer to prayer. I have wanted this for three years now! Her niece was diagnosed with arthritis two years ago at age three so this is very close to her heart as well. So we had our first committee meeting last week and we are having our FIRST ARTHRITIS WALK/RUN on September 10th, 2011! This is a HUGE task but one I am ready and willing to take on. Our main focus at this point is getting sponsors and raising money. I know a few of my fellow JRA moms have experience in this area so PLEASE I am willing to listen to any advice that you can give me! Erica, you out there..lol!!! I am just so excited for the opportunity to raise money and awareness for the Arthritis Foundation!

These next few months will be so busy but SO worth it! Let the advice begin!!!

Hip Hip Hooray!!!

There is no sign of inflammation in Ayla's joints!!! We are so excited! This is the first time in over 18 months that she has not had a swollen joint. I was so excited and was asking if we could decrease any of her medicines but the Dr. wants to keep her on everything for one year. If she is still doing well in one year with normal lab results and no inflammation, then we will talk about decreasing the meds. So it is still two injections a week for miss Ayla for the next year. The Dr. also explained that 50% of the children who are taken off of their meds after being in remission for one year on meds will have another flare up. He said they are doing research now to try and determine which children will have the flare ups again and which will do okay and go into remission without medications. If they could find this out, they could discontinue medicines after three months of being in remission. Wouldn't that be awesome!!




So we are hoping and praying for one year of no flare ups and normal labs! We have came so far with this disease and I am finally beginning to see the light at the end of the tunnel!! Last March she had trouble walking and she would limp and drag her leg behind her but looking at her now, you would NEVER know that. She is running, jumping, playing and just being a NORMAL toddler!! We are so blessed and so thankful.








Our biggest concern now is just keeping her healthy. It is going to be a bad flu season and I have a feeling we will not be doing much this winter. I wanted to sign her up for dance classes or gymnastics but we are going to wait until the flu season is over. I know some parents still bring their children to things like this when they are sick and I just can't take that chance right now. It is just not worth her getting sick over. We have already got her into the habit of washing her hands. I bought her some sponge bob square pants soap and we leave a step stool in the bathroom for her and she just goes in there and washes her hands without our help. It is the first thing she does when we come home from somewhere.



We also saw the physical therapist while we were there. They couldn't believe her progress since the last visit. Ayla can almost straighten her right elbow and left knee all the way out. Her left leg is measuring a little longer than her right so they made some shoe lifts to put inside of her left shoe. Ayla tends to walk on the side of her foot and they think this could be the reason.

Oh, and of course I brought Ayla a surprise while we waited for her appointment to be over. Yes, it was ANOTHER baby. She loves babies and this kept her occupied the whole time. She did so great at her appointment. She did not cry any and she was such a big girl. She has came a long way, she used to cry almost the whole time! I am so proud of her!



So, for the first time since diagnosis, we are FINALLY saying goodbye to arthritis and hello to being a healthy three year old!

HIP HIP HOORAY!!!!!!!!!!

Ayla featured in online magazine article

Ayla was featured in an online magazine, "Therapy Times" this week. The author of the magazine was doing an article on Juvenile Rheumatoid Arthritis and found my blog about Ayla and asked if I would care to have Ayla featured in it. It is very informative and I thought everyone might be interested, especially all of the JRA mothers out there. Being that this is also National Awareness Month for JRA, I thought this was so appropriate! Click here for the link
Thank you Stephanie, you did an amazing job putting a face to JRA!


Baby StepsChildren with arthritis can lead active livesBy Stephanie Twining 07.06.09
Article available online at: http://www.therapytimes.com/070609JuvenileArthritis

Ayla Update

SO FAR SO GOOD!!!!!!!

We are on week three of the Enbrel injections and we have been very pleased with the results thus far! The swelling in her knee is down and she can almost straighten her right arm all the way out! She is walking and running more than she ever has, in fact she walked around our subdivision a few days ago which is a half of a mile. That is awesome for her considering other times she has asked to be carried because her feet hurt.


In addition to the Enbrel, she is still getting Methotrexate injections as well so we just do them both on the same night. One injection in the right thigh and one in the left.

She is becoming quite the trooper. She knows when Daddy puts the emla cream(topical numbing cream) on (which she calls lotion) that she will be getting her medicine. Most of the time when John gets ready to do the injection, I can keep her attention and she doesn't even feel the shot. She cries a little bit, but nothing that a chocolate chip cookie can't cure!!! After her injection, she always says, "That medicine will make me feel better" and then she adds, "Thank you Daddy". John and I will just look at each other trying to hold back tears, it just breaks our hearts. She has such a sweet spirit, especially with everything she has been through!


I mean seriously though , look at this face, she know's she can get what she wants on medicine night (like the car she is on in the previous pictures) Um hum, oh yes, she is catching on QUICK!

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.

Ayla's Update

On Friday we packed the car and headed to Cincinnati, Ohio with BOTH kids this time. My mom usually watches Brennan for us but she has taken a lot of time off of work lately, so we decided to take him with us. The 3 1/2 hour ride there went pretty well, both kids did well even though Ayla did want me to change her movies like every 10 minutes. Anyway, that is okay, at least she wasn't crying. Normally she would be miserable and would cry just about the whole entire time.

When we got to the hospital, John dropped Ayla and I off and he and Brennan went driving around for a little bit, got gas, ate lunch, changed dirty diapers..etc..we knew it would be a long day and Brennan would not last in a Dr's office for three hours.

The Occupational therapist saw Ayla first and was mostly concerned with her right elbow. This joint has always bothered her since the beginning and it is still a little swollen and has limited movement. There were also a few fingers that were swollen. She did a few exercises with Ayla and left and then we waited for the Dr or the physical therapist to come. Thankfully we were in the physical therapy room because Ayla had every ball that she could find out playing with them and she walked up and down a staircase they have oh about a few hundred times..lol..I was glad that it kept her occupied.

This was Ayla during her appointment





The fellow Dr. came in and did her usual exam, history etc and then the Pediatric Rheumatologist came in and did her quick exam. Although Ayla has been doing extremely well lately, she still has some swollen joints noticed upon exam. Both knees, rt ankle, several fingers, rt elbow all looked swollen to the PR. Also her right jaw is affected with arthritis and she was diagnosed with TMJ. They want us to try a treatment called Iontophoresis which is a treatment that is done in physical therapy.
Iontophoresis uses an electric current to push a chemical compound through the skin. Most often a steroid such as dexamethasone. Okay, this requires 20 minute sessions for three days a week for a period of several weeks. Okay people not to sound negative, but this ain't happening!! There is no way that Ayla will sit still for 20 minutes and let someone rub a wand over her cheek, nope not in this lifetime. Ayla freaks out when they take her blood pressure.. I can only imagine.. anyway, after talking to the Dr, we are just going to watch her TMJ and when we got back in May if there are no improvements then we may have to at least TRY the Iontophoresis.

Because of the swollen joints and TMJ, the Dr suggested that we go to weekly Methotrexate injections instead of the oral route. With the injectable route we know that she is absorbing 100% of the medicine and we may get better results. We are going to do this for four months, in four months if there are no improvements then we will talk about adding another medicine, most likely enbrel, which is another weekly injection. So please keep Ayla (and us) in your prayers as we begin this part of our journey. John will be giving her the injections and I know this will be hard on him. We are going to start next Saturday so I will keep everyone posted as to how it goes. We are also weaning her off of her prednisone so I pray also that this will not cause a setback . She will be completely off in four weeks. The Dr. also wants us to talk to our pediatrician about an iron supplement, Ayla is anemic which we have known for a while, but evidently some of her iron studies came back low.

While the Dr came in, John and Brennan also joined us. It was a three ring circus in that room with Ayla and Brennan. They were bouncing balls everywhere and going up and down those steps. It was almost comical as we were trying to talk to the Dr and keep our kids from hurting themselves at the same time. The Dr at one point said, " Um, you can take Brennan out in the waiting room where he is less likely to hurt himself, if you want". How funny!

It was a three hour long appointment and we still had to see the Physical Therapist after the Dr left. The kids (and us) were exhausted to say the least when the appointment was over. The drive home was okay, the kids only slept an hour so they were pretty cranky. Our next appointment is in May so we are going to try and stay the weekend and do something fun with the kids, like the zoo or Kings Island.

Ayla's current meds
Naproxen 125mg/5ml- 3/4 tsp 2x day
Ranitidine 15mg- 1.6ml 2x day
prednisone 15mg/5ml- .5 1x day
folic acid 1mg tab- 1x day
vitamin 1x day
calcium suppplement- 1x day
methotrexate- .3ml oral- next saturday will start injections

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 sure..lol...of 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 kandykissesboutiquetypepad.com. 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!

" OUR LIFE "

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!"

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