From mama....

So, things have been crazy yet ok for Lily. I have been fighting with the "lovely" school system to get Lily into speech therapy and preschool part time. The outcome is horrible. Since Lily's primary language is English, she does not have priority for speech therapy. Priority is given to those whose native language is not English. Let's skip how I feel on that.... Regardless, ESL is way different than speech therapy. If Lily does not get speech, we may loose what we have. And, when her ears get a little bit inflammed from being sick, we loose and take several steps back from where she was.

We have been out of physical therapy for over a month....let's not go there either. Ventura CCS has been horrific to work with so far. I am hoping that we are able to start soon. It seems like moving was not a good idea for Lily's health...but a great idea to avoid stairs and get some peace and quiet. I have decided to keep all of her doctors/specialists in SB. So much has happened the past 18 months that the idea of changing them is silly. I am lucky that I really like the team of doctors!!!

A few weeks ago, Lily had a horrific reaction to the Methotrexate...it was scary. Given all the meds she is on, her arthritis is not getting better. She is still having several daily flares and is in pain most of the time. She went from being a kid who pushed through the pain to walk, run and play, to one that refuses to walk and screams in pain. We have very few nights that she doesn't wake up screaming in pain several times. ARTHRITIS SUCKS SUCKS SUCKS!!!!

I am working with her rheumatologist and doctors to figure out when a good time is to be hospitalized for monitoring since she isn't doing anything "by the books". She is my kid.

Pray for me. I have had a really hard time the past month or so dealing with it. I have hit brick walls getting her the vital therapies she needs. I can't stand to see her in pain so much. For only being 3, she has suffered the majority of her life. It's not a matter of why or not fair, it's a matter of my baby is constantly in pain and rapidly getting worse.In the past 2 months, she went from being non-stop running to barely walking and crying when she has to. In the past 2 months, Lily has only a few good days of eating because of the side effects of meds. In the past 2 months, Lily's Methrotrexate levels were upped and yet she isn't getting much relief.

However, on a positive note...in the past 2 months, we were SUPER BLESSED by the Arthritis Foundation to experience the amazing Juvenile Arthritis Conference where I learned a ton. In the past 2 months, I have gained a lot of knowledge and somehow not let the crappy circumstances destroy me. In the past 2 months, I have been blessed by friends. In the past 2 months, Lily has starting talking more and more. In the past 2 months, Lily has been on a huge learning curve.

In the next 2 months, we will hopefully be hospitalized to help bring the disease under control to help Lily have a more "normal" childhood. In the next 2 months, we get to do amazing things through the Arthritis Foundation. In the next 2 weeks, we get to help give back to them.

JA CONFERENCE!!!!

I will post pictures when my mama gets them developed. Of all things, my mama forgot the camera!!!!

Anyways, the conference was great!!! I played with a lot of other kids my age that have arthritis. It was sad to see so many little kids affected by it. I was a good girl, as long as I had my nene (binky) and cuddles. The time change was a little hard, but it worked it out.

The first day, we had a yummy dinner and played with thunder sticks. I was very overwhelmed at first but warmed up. I loved banging them together. The next couple of days I got to play with the same group of friends. We watched movies and did art projects. I made a shaker and hat for the parade on Sunday. The parade was fun. I saw my picture on the huge TV a few times.

I went and saw the Liberty Bell, Independence Hall, the Betsy Ross House and some other things. I didn't care about any of it, but my mama said that I will one day:) We'll see.
My friend Jackson's mommy let me use his great Stokke Stroller. I liked sitting up high. I liked looking at faces and not butts:) Thanks mama Monica...I will consider giving it back:)

I was a good flyer. I like to fly. I didn't like the guy yelling at my mama and yelling at a baby. He was mean and I told him "HUSH, NO NO NO!!!" He didn't like it but I didn't like him yelling. I only slept the last few minutes of each flight. I saw lots of lightening storms. My mama thought it was really cool.

I hear my mommy talking a lot about shots. I don't know if I like the sounds of it. Who likes shots???? Not me, but I also don't like taking all the different meds.

I want to go to the conference next year. It is in Crystal City/Arlington, VA from July 7-11th. They say to come early to the 4th of July party in DC. I know my mama is working on getting us out there.

Thanks for praying for us while we were there. It was a fun trip and I can't wait until next year.

THANK YOU ARTHRITIS FOUNDATION FOR SENDING US!!!!!

Lily

UCLA in review

Yesterday was a long day for me. I didn't sleep much and we left for UCLA really early. I had a hearing test done. I did well. I have a 20-30 % hearing loss right now. I am healthy and doing well. The doctor hopes the loss is temporary and I will get it back. I have to do another test when my ears are really hurting and I have more issues talking. If my ears don't get better, I will need surgery before I turn 5.

I saw Dr. McCurdy, my Rheumy, and it was all good. I got new a lot of new medicines to try so I hope I like it all. I still have arthritis. She thinks I have Polyarticular extended JIA....

I also met with Susan, the Physical Therapist. I like her a lot. She says I have to wear my ankle braces for at least a year. It is helping my knees more than my ankle (which is good) , so we have to do something else for the ankle.

I am getting excited for Philly. I get to play with other little kids that have arthritis. We are going to the zoo on a field trip while my mama listens to people talk.

Hope you are well, I am!!!

Love,

Lily

Life in check

This is Stephanie...

Lily has been doing pretty well lately. Her only issue is the mouth sores aren't going away from taking Methotrexate. She is talking a lot since she can hear and feels better. She is playing a ton on her own, which is great to see. She is waking up a lot at night in pain, so I'm tired but it's ok.

I have been fighting with the schools and speech therapists. Lily has to stop speech therapy at 3 with TriCounties Regional Center. Lily needs to continue since she is talking but still having severe issues. Because of the horrible budget cuts in schools, they are wanting to place Lily in a full on, non-mainstream, Special Ed class so they get paid more so they can accomdate speech therapy. What a joke, right? There is nothing wrong with Special Ed. If that's what she needed, then that's where she would be. But, she is mentally and physically able to be in a mainstream class. It's so frustrating. Lily's speech will take off around other kids, and she is as smart as they come. Her arthritis doesn't hamper her physical ability much.

And, the class is in Saticoy, not close at all. I can't take her there and I sure as heck am not putting her on a bus for an hour. Not gonna happen.

If it continues, I will appeal and then make them pay for a private school of my choice since they are refusing her the care she needs. Surpringly, that's the route they suggest you take without saying it bluntly. No one thinks she needs to be in a specialized classroom or have one-on-one care, but it's what they are doing for kids with IEP's.

On a different note, I have been trying hard to stay positive with the situation at hand. I am beyond anxious to go to Philly and learn and network. I need to do all I can to be with Lily and provide the best care possible.

That being said, I have really been put into check, by myself. Britt Merrick, the pastor of the church I used to go to, is in for the fight of his baby girls life. I can't imagine the thought of Lily already beating cancer just for it to come back 2 months later with a grim prognosis. I cry when I think about it. I don't know if I'm strong enough for it. It really is a time for me to check my relationship with God and wonder where my strength is...with doctors? with myself? with superfical hope?

I don't know if I can say that I fully trust God to heal Lily, let alone Daisy. I pray for it, I really do. I just don't want to get my hopes up. I know this sounds wrong, but I really think that God is using the Merricks and Daisy to open the lines of communication with God. Before being a parent, I thought I would understand. Being a parent, I am heartbroken for them. I am at a loss for words. It goes well beyong "Why God, why?" In my heart I trust God to heal Daisy. I know God has a plan, but what is it and why? Will we ever know? Heal her God. Doctors can try, but only You can.

Perspective has been my word today. I am grateful Lily isn't worse. I am blessed that she is in as good of health as she is. I am blessed she is healthy and arthritis is treatable and not incurable. Shame on me for whinning about it. Shame on me for letting it drag me down. God is protecting Lily and I. I don't deserve it, but I see it. Perspective. Great word, amazing thought.

Pray for Daisy Love Merrick (I love the name!!!)

Pray for the Britt and Kate and big brother Isaiah.

Daisy's blog is: http://www.prayfordaisy.tumblr.com/

Read it and pray for them.

Much love,

Stephanie and Lily too...

Finally feeling better

The end of last week I went and saw Dr. Quinton Gopen, an Otolaryngolist...whatever that means. He specializes in Balance Disorder, Cochlear Implant, Facial Nerve, Neuro Otology, Oncology, Otology, Pediatric Ear Problems, Skull Base Surgery. I went because my ears have been bugging me and really hurting. My mama thought it could be the arthritis settling in my ears, but it's not. It's a seperate issue. I remember people saying that I look drunk when I walk sometimes. He said it was because of my ears. I overheard Dr. Gopen telling my mama that we have to have 2 audiology tests done: one when my ears hurt and one when I am healthy.





Dr. Gopen thinks that the throwing up episodes are because of the my ears and the way it affects my body. He also said my speech issues are because of the inflammation of the way inner ears.





I have felt good the past 2 days and have been talking. I think he is right. I want to talk, I just can't hear it that well. Perhaps my mama will lay off me if I don't hear her or I ignore her:) I don't think she will.





When I go back and see Dr. McCurdy, I will have the audiology testing done first, wait a few hours, then see Dr. McCurdy.





Hope you are happy. I keep telling mama "I happy". I have tried to be a good girl lately. I hope to be for a bit longer (my mama more than anyone wants me to be good for a lot longer).



My mama is trying to get us ready for the big trip to Philly in 2 weeks. She has been on the phone working out the airplane seats and hotel requests. Do you have any toys or ideas I can tell her that is fun to play with on a plane? My nana says I don't need anything but my mama says I do. Can you imagine me being couped up for a 9 hour travel day? I can't sit still for 1/2 hour unless I don't feel good. I have a feeling I'm going to feel good and be hyper!!! I'm funny that way.

We didn't have the garage sale because of UCLA and I wasn't feeling good. I think she wants to do it this weekend. I don't know if it will happen. So much is going on.

Hugs and licks (I lick like a dog instead of kissing!!!),


Lillian

2 doctor visits today...

Today was to be a simple day. Physical therapy in the morning and then watching my room get painted. Instead, I got to play with Jackson and I napped there too!!! At 3, I went to Dr. Kelts to see if I was having GI issues. He said not really, gave me a new rx for liquid Prevacid since I hate the tablets. He mentioned to my mama that I more than likely have migraines that go alogn with the CVS (Cyclic Vomiting Syndrome) that I have. He also mentioned that I could have TMJ which is not uncommon with JIA kids. He also said it could be the ears. I laughed when he said I was one of his mystery patients that keeps him on his toes. I hear it from my mama too...My nana says it to me all the time because my mama was the same way.

I have to go see a new doctor on Thursday at UCLA. His name is Dr. Gopen and he is a pediatric ENT (he has a better title but I forgot what it is). He will hopefully be able to help me. I don't know if he is going to make me sleepy and do an ear biopsy or not. I have heard my mama say that if they put me to sleep, I will have a lot of other testing done that we have waited for.

I finally ate dinner today. I ate turkey, and lots of it!!! I also ate my mama's ice cream. I thought it was funny. She said she wanted me to eat, no matter what it was:)

Hope you have a great day.

Love,

Lillers

Lily's list of Doctor's

This is Stephanie aka mama...
Today I met someone who is starting down the same road I did with Lily and what doctors to choose.

Here are just a few that we see regularly:

Colleen Cianciarulo, NP, Sansum Peds on Hitchcock. I LOVE HER I LOVE HER I LOVE HER!!!!!

Dr. Deborah McCurdy, Pediatric Rheumatologist, UCLA I LOVE HER I LOVE HER TOO!!!!

Dr. Sean Early, Pediatric Orthopedists

Dr. Mark Silverberg, Pediatric Opthomologist , Sansum, who works a lot with JIA kids

Dr. Drew Kelts, Pediatric GI, Cottage Hospital, Santa Barbara

Dr. David LaPatka, Pediatric ENT, Sansum on Pesetas

Dr. Myron Liebhaber, Allergist/Immunologist

Dr. Mark Toscher, ENT/Audiologist

Then we have PT and Speech Therapy...

This is what I can think of off the top of my head. I'm sure I'm missing people.

I would highly recommend all of them, whether minor or major health issues. I really like the team we have in place. I just wish they had a magic ball and could see everything going on with Lily.

Stephanie

Today...

Last year I hated the fireworks, so this year I saw them from a distance. We went to the top of a mountain and I saw a lot of other fireworks shows. I really liked the purple ones.

Today was an ok day. I still don't like to eat. Everytime I eat, I get sick. My mama doesn't know what is going on. My ears are still hurting. I layed around a lot today. I could only play for a few minutes before I had to rest. My knees were really swollen today. My fever only reached 99, so that's good. My normal temp is 96.7-97.2., so 99 is a fever for me.

I am going to physical therapy tomorrow morning. I am getting used to my braces. I hate getting my shoes because they are tight.

I am hoping to get into UCLA soon so they can figure out what is wrong with me. My mama is on the phone all the time.

I got my room painted purple. I love purple. It's one of my new words I can say clearly. I hope to have my room pretty soon.

Love ya,

Lily

Arthritis Walk

http://www.facebook.com/photo.php?pid=1279054&l=6d1491384f&id=1293198229
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Hives/Rashes then my cutie pie

Pictures of her rashes/hives

Just getting started...

Hi Everyone,

This is my blog to keep you updated on how I am doing. I know that my mama tries to keep you updated but after awhile it's hard.

My mama is going to fill you in then I will take over from there since I have to do things myself. I don't know where I get that from:) My mama swears it isn't from her!!! My nana says it is:)

As a newborn, Lily had some pretty serious GI issues and major allergic reactions to all vaccines/immunizations. After every single one, she had a fever of 105+ and was hospitalized. At 3 months, she was started on cereal. Since she was born, she hasn't been a fan of eating. At 6 months when she wasn't crawling and didn't like standing up, I noticed her leg was pronated. We watched it and the doctors just thought that it would work itself out. She didn't start walking till she was 16 months old, after Mike left. At that point, she didn't apply pressure to her left leg for more than 3 seconds. Still, doctors thought it should work itself out once she walked more.

When we finally got settled into life in Santa Barbara, I allowed her to get a few more shots that were in her best interest. Once again, allergic reactions. We moved to Santa Barbara in Dec. of 08 and mid-December, she started developing serious hives, fevers and random swelling of her left knee. February we went to an infectious disease doctor at UCLA since she had such issues and Roseola. They didn't know what was going on. When I started my own research online, everything came back to CP or arthritis. In March we went to Dr. McCurdy. She is Lily's Pediatric Rheumatologist. Dr. McCurdy was very leery of formally diagnosing her because of her age. She had all the signs, but her young age was pretty alarming. We started Lily on Naprosyn and Prevacid to see how she would react. She was ok for a few months then started having serious GI issues. She went through a phase of throwing up about 20 times in one bout. The worst of it was over Christmas of past year where we spent the surrounding days in the ER.

Since December 09 to now, Lily's arthritis has rapidly progressed. She has been to numerous specialist and her general care doctors more times than I can recall. Let's not go into what the outstanding medical bills are after insurance pays out. She is now on Methotrexate once a week. From the very first dose, she had reactions to it. She got the mouth sores and some pretty serious rashes/hives. It seems to work for a few days.

This past Wednesday, Lily got braces for both feet/ankles. She has to wear them all day to help build up the ligament that is lacking in her left foot. We are hoping that the braces help with the pronation of her feet and knees, which will hopefully ease some pain for her.

Lily will continue with physical therapy and speech therapy. She receives both at least twice a week. There is talk of adding aqua therapy and occupational therapy to the schedule. Somewhere in there I wanted Lily to go to Preschool 2 or 3 mornings a week.

At this point in time, Lily is in constant pain. She pushes herself to do things herself. More often than not, she wants to do it on her own even though it hurts. My heart breaks when I hear her in the middle of the night screaming because she can't "bend hand, no bend hand" or "no foot move, no foot move mama" or "I'm hot. I'm hot" or "mama, I hurt. I hurt all mama". Talk about heartbreaking, I hear it most days. It was almost easier when she couldn't communicate. I love that she can be more specific, don't get me wrong. I'm just a mom who wants to take all of her pain and agony away. The rashes/hives and hot and swollen joints are tough to see, I can't imagine how it feels.

I dream of a week where Lily has no flare-ups or rough mornings. I dream of the night that Lily sleeps through the night and doesn't wake up in pain. I dream of the years down the road, praying hard that she outgrows it quickly. I can't let the fear rule my thoughts. I am realistic as to what is going to happen. I do everything to prevent it now. I fight the battle at hand and look to see what I can do to help ease it in the future.

I am thankful that Lily isn't as bad as other kids. There are plenty of healthy kids but there are also plenty of other families dealing with much worse issues. It's a different story when it's your own kid. I try to remain positive. I'm human. Some days I just cry with her because there is nothing I can do to take it away or relieve the pain. Some days I laugh all day with her because she is feeling ok. Lily and I live hour to hour and day to day. It greatly varies.

Please keep Lily in your prayers and good thoughts. Please pray for me.

My motto is: "It is what is. Now what?" and my new mantra is "Superwoman ain't got nothin' on me!!!"

Blessings,
Stephanie