It's A Crescent!!

This is the following conversation between John and Ayla tonight.

John- "Ayla, look at all of the stars, God made all of those stars."
Ayla-"yeah"
John-"And look, there is the moon."
Ayla-"Daddy NO, that's a crescent!"

I guess she IS paying attention when I tell her all of the shapes...Who knew!!! Anyway, I thought this was too cute!

ONE YEAR AGO TODAY

ONE YEAR AGO TODAY
Ayla was diagnosed with JRA. I can't believe one year has gone by since I wrote this first post. It has been a stressful year, but we are in a much better place now than we were one year ago. This time last year Ayla could barely walk , now she is jumping and running everywhere! There have been many times when I have felt we have taken one step forward and two steps back but overall this has been a learning process and you learn what works and what doesn't.

I feel very optimistic about Ayla's progress thus far. Only John and I would know that she doesn't climb the stairs as well as other two year olds or that she isn't running quite as fast or that she has a hard time opening her mouth to eat, but she IS climbing the stairs and she IS running and she IS eating, and for that I am very thankful. I do not know what the future holds for Ayla, but I still have hope and faith that Ayla will outgrow this disease and lead a normal, healthy life. Only the "Great Physician" knows our path and future, and I am willing to accept and follow whatever path he chooses to lead us on. For those of you who do not know, Ayla's middle name is "Faith", we tried two years to have her and I thought Faith for a middle name was fitting. Now I believe it is even more fitting and "Faith" will get us through this time in our life.

One year ago today I started this blog to keep family and friends informed of Ayla's condition. I have really enjoyed keeping a journal of our life this past year and have met some incredible people who are going through the same thing. It is so nice to talk to others who understand what you are going through and I love to help and offer my advice and what I have learned to people who are new to this disease. Most importantly, I hope that in some way I can raise awareness and be an advocate not only for my daughter, but for the three hundred thousand other children that are suffering from this disease.

The city that I live in does not have a Arthritis walk and this has bothered me for quite some time. If you live in a city that DOES have a Arthritis walk, please go out and show your support. I have been in contact with a lady at our local Arthritis chapter (which is in another state) and it is my goal within the next couple of years to organize a Arthritis walk. If you live locally and would like to help me organize this walk please get in touch with me or leave a comment. It takes a minimum of twenty people to get this started!There are many reasons why we need to raise awareness for this disease. Here are a few.

The Facts:
Arthritis costs our country $128 billion annually; $81 billion in direct medical costs.
294,000 children have a form of juvenile arthritis including juvenile rheumatoid arthritis, lupus, and scleroderma.
By the year 2030, 67 million Americans or 25% of the adult population will have arthritis.
Nearly 19 million people with arthritis are forced to stop working within 10 years of diagnosis.
As the most common cause of disability and the third leading cause of work limitation in the U.S., arthritis has a significant impact on our nation’s economy.
Americans with rheumatoid arthritis die 5 to 10 years earlier than persons without arthritis.
9,500 Americans die due to arthritis in 2003.
2/3 of Americans diagnosed with arthritis are under the age of 65

We need to raise awareness and money so that more research can be done in hopes for a cure for this disease. Another way to do this is to contact your local legislature and encourage them to vote for the
HR 1210, the Arthritis Prevention, Control, and Cure Act.

The Arthritis Prevention, Control and Cure Act WILL

• Strengthen arthritis public health initiatives, allowing more people to be diagnosed early and avoid pain and permanent disability;
• Expand the reach of evidence based self-management activities such as weight control and physical activity, which have been proven to reduce pain and reduce health care expenditures;
• Establish a juvenile arthritis population database to better understand the disease in children and their treatment;
• Enhance support for pediatric rheumatology training programs; and
• Establish a loan repayment program for pediatric rheumatologists to address the country’s severe shortage of these critical health professionals.
  
  Okay, I will get off of my soapbox now, so many people are affected by this disease and this is so close to my heart so I encourage all of you to send a letter to your local congress and ask them to support this cause.

The following poem was found on facebook written by Stephanie Sayre a teenager with JRA. This is why it is so important!!!

My Life in VerseI crack my eyes open; the day beginsA few seconds later, the pain sets inA two hour fight to get out of bedTakes all my strength just to raise my headHalf an hour, clothes on, hair brushedEvery morning I feel so rushedStagger to class, people brush pastTry to take notes; the professor talks so fastLunch is a battle; I don’t want to eatSo many faces I don’t want to meetElevator’s broken, must take the stairsLate for physical therapy, I hope I make it thereThe pain, the anguish, the hour from hellWill I get stronger? Only time will tellPeople sneering “But you look fine”Well I’ve had this, since the age of nineDay is over, I spend a little time with my friendsBefore I get too tired and head off to bedBut I can’t sleep; my eyes are peeledI can’t escape all the pain I feelWell, tomorrow is another dayThe hope in my heart will never fly awayUntil a cure is found, this is all I can sayAbout my life with JRA

P.S. Ayla's original diagnosis was on March 24th,2008 but it took me a couple of days to get this post together.

The Easter Bunny and The Wiggles

All in one day, what a great day if you are a two year old!!!! Saturday our local mall was having a performance by the Wiggles which included Dorothy the Dinosaur and Waggs the Dog. They were there I guess to introduce the Easter Bunny...lol..my kids love the Wiggles for some reason so I knew we had to go when I heard they were going to be there. I had this planned for a week. I had everything ready the night before, It was supposed to start at 10:30am so I was on a strict schedule as to what time the kids would get up, eat and dressed..etc.. so we would be on time. We got there at 10:15 and I was sad to see that the Wiggles were already on stage singing and dancing. I had got the times wrong and it actually started at 10:00 instead of 10:30. It was packed and we didn't have a seat and they only did two more songs after we were there. All that planning and getting everything together and it was over before we could get our jackets off. Oh well, the kids still loved it and Ayla cried for "Dorfy and Waggs" as they left.

We took her to see the Easter Bunny next and that made her happy again. She waved at him from a short distance but we did not try sitting on the lap. The line was extremely long and I don't think she would do it anyway. It was funny, she kept saying, "Bunny has blue eyes", "Bunny has pink ears".

So there you have it, The Wiggles and The Easter Bunny all in one day, what more could you ask for!!!!!

Saturday....Injection Day

I guess this is what we have to look forward to every Saturday. John gave Ayla her first methotrexate injection on Saturday. We had been putting it off for two weeks now but because Ayla had a couple of bad days last week, we knew that we HAD to get the injections started. When we first found out that we would have to start injections, John was confident and willing to give them. He is a Physician Assistant and has given many shots and even joint injections over the years. I am a nurse and I could give them if I had to, but I was so glad that John stepped up and volunteered to take on this task. As time drew closer to give the injection, it became harder for John and for two weekends we gave the oral instead.
This Saturday, we knew that we could not put it off any longer. We put emla cream on her thigh, which Ayla calls "lotion" and then about thirty minutes later we changed her diaper and John did it then. She cried of course and we both wanted to cry but we held it together and tried not to make a big deal out of it. She had her babies out and we just got her interested in that and she soon forgot about everything and went on playing. (Sundays are actually worse for Ayla. She always feels bad the day after taking methotrexate. She cries alot Sunday morning and doesn't eat well the whole day. I think her stomach is upset and we were told this is a common side affect of the drug).Thankfully, it is only one day!

Of course it was harder on John and I then it will ever probably be for her. I guess that is how it always is. Kids are so resilient, and they just keep on going despite what life throws at them. We as adults could learn so much from THEM.

All day Saturday and Sunday, I was in a bad mood. I had the "why me"mentality, why did this happen to us? why cant Ayla be a healthy two year old? Don't get me wrong, I do not feel like this always, most of the time I am positive and I hardly ever complain,but I do have my bad days.
Then afterwards I always feel so bad because I know there are so many other children that are far worse than Ayla with far worse conditions and then I feel guilty for even thinking this way.

And so the battle rages on..................

Anyway, there have been several friends ask about Ayla and how injections are going so I just wanted to keep everyone updated. I appreciate your thoughts and prayers more than you will ever know!

A Day At The Park

This past weekend the weather was beautiful, it was in the 80's and it felt like a typical hot summer day. We found a park in downtown Charleston called "Celebration Station" and it is awesome!

The kids loved it, in fact I took Ayla Saturday and Sunday!

Ayla's favorite part was walking across the "bridges" and Brennan, well he just enjoyed walking, I mean running everywhere!

There were a ton of swings........

and slides.........

there was even a little "play house"area

and Ayla even found a spot to practice her driving skills , you can tell she is going to be daddy's girl! Well actually if you ask her, she says that she is "mommy's princess" and "daddy's boy". John gets a big kick out of that!!

and after a day of fun in the sun.........



Brennan was exhausted and ready for a good, long nap! Hurry up summer, we are ready for more fun days in the sun!

By the way, I woke up this morning to snow everywhere :( this weather is crazy!

A SUCKER A DAY.................

keeps crying babies away

unless you are Brennan and you do NOT want to sit on your sister's lap for a picture!!!!

LOOK WHO IS 16 MONTHS OLD!!!

It seems just like yesterday that we brought this sweet baby boy home from the hospital Sixteen months (almost 17 now) has come and gone .Thats right, this beautiful, sweet, loving, big blue- eyed boy is 16 months old! Brennan is growing every day and is starting to develop quite the personality. He is definitely a Momma's boy and oh how I love him! Most of the time he will not let any one else hold him except me. If you try to hold him, he says "no" and looks away. Just the other day John said "You don't even like your daddy". Im sure it is just a phase, he is even getting jealous of Ayla. He used to be so happy when she woke up in the mornings, but now he cries when she gets up because he knows that she will be getting some of my attention. He is up a full two hours with me before she gets out of bed. He goes to bed at 8 every night and is up at 7am on the dot. Here lately he has only been taking one nap during the day instead of two.



These days he is Really into climbing, his new thing is sitting ON TOP of his train table and playing while watching Blue's Clue's.



He also likes to climb on all of the furniture and jump up and down.


When he is not climbing on everything, he likes to help his Mommy clean.



When I sweep up a pile of dirt, he loves to walk through the dirt and spread it everywhere. Doesn't he know that is Not helping mommy? Ayla on the other hand says "yucky, dirt" and walks AROUND it. Thats my girl!

He even enjoys swinging in the swing that Daddy put up for him





Every once in a while, he will even fall asleep in it, holding his favorite Blue Blankie of course. For some reason he likes to fall asleep with blue blankie on his head- silly boy!!!!




I think his FAVORITE thing to do is read books. Just a couple of days ago John and I found him sitting in the floor looking at a book and he was just jabbering away. It was so cute!


Oh, how I love this baby, I just wish that he wasnt growing up so fast! The best moments are when he is in my arms, lying his head on my chest, I know these times will not last forever, and I just like to soak it all in and remember every detail. I am so thankful that he is in our life. He melts my heart EVERY DAY! I love you baby boy!!


Things he is saying
hi, by (and waves) duck (quacks like a duck when he sees one), roars like a lion, Dorwa (dora) bobble (bottle) momma, dada, juice, NO (and very well), truck
He can point to my nose, eyes and mouth


I love you Brennan, thank you for putting a smile on mommy's face every day

"Washin the Lishes"

Oh, Boy What Have I Done?!!!!!!!!!

I had the great idea to fill the sink up with water and let Ayla play. Wow, does she like this. She wants to do this CONSTANTLY! She says that she is "Washin the lishes" I keep trying to get her to say "dishes" but she insists that the correct word is "lishes". I tell you, these two year olds think they know everything..lol. She also says that she is "stirring the eggs". Oh well, it does keep her busy while I am trying to get some things done and she really, really enjoys it............ what are the chances that she will continue to like "washin the lishes" as she gets older? hmm, I guess I wouldn't bet on it!

And now if I could only get Brennan to CLEAN the refrigerator while he is taking everything OUT, that would be just great! Doesn't he know that he could make my life MUCH easier..lol..

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