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.

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