Thursday, June 23, 2011


Here is what happened in May (and the end of April)

April 26th we met with Dr. Richard Boles at CHLA (Children's Hospital Los Angeles)  He is a genetics specialists.  He is interested in Lily because she has so many odd health issues.  Lily has regular face/trunk hives and red hot spots that I thought was related to her arthritis.  Well, he is just about positive that it is Mitochondrial Disease and not related to the JA.  Cyclic Vomiting Syndrome (which Lily has) is also an aspect of Mito Disease.  Mito Disease is a genetic disease passed on by the mothers.  They drew blood that day and the results take 2 months to get back.  So, it's a waiting game.  In the meantime, Lily has been diagnosed as having a severe creatinine defincency.  Normal levels are 25-84, hers were 0.4.  She has started L-Creatine, an energy booster often found is energy drinks. She does not need more energy!!!! 

Lily also saw Dr. McCurdy and Dr. Gopen on the same day on April 29th.  Her rheumatology appointment was ok...nothing happened (good news and bad news of no new meds)  Dr. Gopen did a hearing test that came back better than the previous one.  We did however schedule her surgery for tube removal and new ones.

The week after Lily was sick sick sick.  What started as an ear infection turned into a UTI, bad cough and then full blown cold. We were at the doctors 4 times in a week because it was something new everyday for a week.  We finally got a Nebulizer and that worked wonders at night time.

May 11th, I did a radio interview with Trace Neely on 105.5 about the CPK FUNdraiser.   She was amazing, supportive and helpful.  I really appreciate it Trace;)  She got the word out there about juvenile arthritis  and a few people donated because of it. She went back and I introduced Lily to her.  I must say, Trace's son is handsome!!!!  Trace, I really appreciate all that you did to help raise awareness about JA. 

May 12th was the CPK fundraiser benefitting the Arthritis Foundation.

On May 17th, we headed to the hotel by UCLA for her surgery on the 18th.  The beginning of the surgery was scary, but ended  great.  The last time she had tubes put in, she did not come out of anestia well.  She came out of this surgery well.  I was a happy and relieved mama!!!  We came home on the 19th to ensure Lily had a day of rest and no throwing up episodes.

On May 21st, was the annual Arthritis Walk.  We loved the walk last year.  This year was great.  Lily LOVES everyone and everyone loves her.  It was another successful walk.  I LOVE THE ARTHRITIS FOUNDATION.  I love my local office because the ladies there are amazingly helpful and supportive.  We didn't raise nearly enough money, but there is next year.  Regardless of what money we didn't raise, they have never treated us differently.

On May 22nd, we went to the Strawberry Festival and just had fun.  Lily is a daredevil and loved the rides.  She was really upset she was too little to go on the big kid ride.  She tried to convince me she was a big girl and would like the rides.  I'm going to be in trouble if she likes  the adrenaline rush that I did :)

All in all, May has been a whirlwind month, with way too many doctor appointments and therapy sessions.  However, her health is priority.  May has also been a stressful month, but overall fun and loving month for Lily.  Lily has played a lot and met new friends.  We were able to share the fact that kids get arthritis too...which surprised many people.

Please continue to pray for Lily and her health.