Monday, August 30, 2010

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 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 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.

Wednesday, August 4, 2010


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.