November

It has been a few months since the last post. Ava has had so much going on. I finally had enough with the Dr that replaced Dr.Lopez. I hate to say this but a MOTHER knows best when it comes to our children even a Father. I am now happy that I made the tough decision to leave Tufts Floating Hosptial for Children. If it wasn't for Dr.Lopez and his team who knows where Ava would be. It was sad to see him leave, we have since moved on to Children's Hospital Boston and are now being followed by Dr.Sandel I first did my research on him. He is like the god father of JRA, he was so amazing and what an amazing connection he got with Ava. Usually she is not having it and he got to her level and reached out to her. Ava has been on Maloxicam every day for over a year. In sept he said to stop it and to see what her body would do, because it "HIDES" alot of symptoms. So we did a few days later Ava had all her GI problems back again like she was as a baby. On top of that her mouth had these white headed pimples in her mouth. I am not a doctor but I knew she should be Folic Acid with the Methotrexate but she was taken off of it for some reason and now that Ava had to go threw that terrible ordeal with her mouth having booboos. She is now back on the Folic Acid. The Maloxicam did take care of alot of her GI issues but now off she is on liquid Zantac twice a day to help and on stool softeners as well. Miralax every other day to help her out and to give her more control instead of pass large stools. I still don't know some days what to make of it but it is what it is. I believe because Ava went untreated for 2 years and not a doctor knowing what she had made a huge impacted on her life today. I am lucky I am a strong mother but I still can not figure out why me and why my daughter, I know every parent out there who has a chronically ill child says the same thing.

Flares

If you don't know the definiation of a flare which is commonly used in our world of Arthritis. A "Flare" in my own words is when a part of the body or joint that has been "normal" meaning no problems all of a sudden starts to swell and heat up cause pain and irration. Making Ava tired and the rest of her body tired as well it takes a lot out on the body and the other thing is that you don't really have to have a swollen joint to be tired to be in a flare. It is always in the body and is so active that it makes her body work over time to keep her temp cool and relaxed and it makes her very tired. Ava has always been in some sort of flare and it is getting to her. She just wants to play and have fun but she is so tired and just wants to lay around on the couch in her night gown all day. There are days as a mommy I think hasn't she been threw enough when will it stop or go into remission? From her outcome now losing hearing in her left ear having her adenoids inflarred as well and now needing surgery. On top of that having the arthritits in her eyes and over this past weekend her eyes were bloody red. Thinking its an infection I get her on antibiotics and now she is cring her eyes hurt and things look funny. So the battle will go on with her. I have learn to stay calmn and don't ever let her see me get stressed and act like its no big deal. She will do the same and it makes life a lot easier. However I still hate this illness with a passion!! People think oh she doesn't look sick someone does not have to be hooked up to iv's or look like crap to be sick. I call that ignorsance and its bliss, those are the people I like to educate right there. I like to say how about you be a toddler living in pain then try to explain yourself to adults.

 I truely hope some day they find better ways and medication for children like Ava. They deserve a better life then this fill with doctor appointments and medication.

Summer Fun

Even with July being here Ava's Arthritis is still very present. She has fluid in her hips now and it is back in both knees very active in her elbows. I figured with how stronge she is and with all the swimming she does plus being on the MTX for 15 months now that we would have very little activity. As a mom it breaks your heart having to give the medications. I know swimming is the best thing for her. I am happy she loves to swim. We are still fundraising to raise awareness for children like her to find better medications and treatments. We are doing the Arthritis Walk on Sept 16, 2012 please make a donation or come join us!!!

Tricky Tricky

I usually am positive with my post. Today however I can not be. I understand the nature of the beast you never know when it will hit hard or take your child down. For me as a single mother as I think we are making progress to notice something is not right. But to have the doctor's tell you no she looks great. BS!! I always trust my mother/parental gut instinct. It has never failed me yet, as mommy's we always know, people ask how do you its just we do! its our baby. I have told her doctor before he left and we had to get a new Rheumatologist. That Ava is getting bad flares again and low grade temps. He just goes she is fine and looks great. He knew but kept telling me look a year ago she was not walking it is a work in progress. Which is so true I totally understand that but it is so fustrating. Giving me strength and hope and telling me we can soon take her off the MTX (methotrexate). I knew something was not correct. After doing Ava's sedated MRI my gut feeling was right! She is not getting better we are losing control again not that we ever had control. She is highly active I was sad but happy that all my complaining that she is going back to her old ways. Not wearing shoes or socks taking a while to wake up and get out of bed. Telling me her hands hurt and her boo boo knee is back. Seeing her hold her hands in the position to relieve pain. I brought this all up and to have someone tell me its a habit BULLSHIT!! I know my child, I will never give up on her or her illness. The doctors might have the knowledge and which direction but they do not know my baby like I do. Or as any parent knows their baby remember that. Now that I have this new doctor's attention and she knows I know my stuff she no longer blows smoke up my ass or tries to brush me off. Never let a doctor do that. I will be part of every decision and what path to take. On June 26th is another long day for Ava she has x'rays, ultrasounds, blood work, eye exam and to get them dilated. Ava can now go blind because of the Rheumatoid Arthritis is so bad and she carries the extra protein and is ANA+. Not every child is positive for that but it is always on the back of my mind the what if. I have noticed even thou I might be acting like am not listening. I hear everything that she says and the way she says it how she expresses it or tells me how her body or eyes feel is so vital and lets me know what she is going threw. Now that we are going to have to take a new path of treatment I am uneasy about it. But I know it has to be done. As parents don't ever give up if you feel unsure like me question the doctors and question them some more until you feel confident. They work for your child and to make sure you understand this evil, sneaky, illness!

One year

What a year it has been. I felt like my life has been on emotional roller coaster and we are at the end of it just taking in the sites. In the last year Ava has been thew so much for such a small person and only at the age of 2. I sit back with tears of joy that we are now seeing the rainbows and sunny days again. I can never thank Dr.Lopez and his team enough for giving me back my little honey bunny. To see her run around, laugh and smile and just be a average 3 year old. This time last year Ava was not walking on her own really, couldn't use her fingers or hands, not sleeping high fevers etc. March 8th 2011 first time we meet Dr.Lopez did all the testing on March 23 they took bone marrow to make sure she didn't have cancer. Talk about a stressful moment in any parents life, I thank god every day that she did not have cancer. Then to start to find all the medications that will work for her. Today April 3rd last year Ava had a seizure to one of them. I never again gave her that medication. April 5th we got her diagnose. April 12th we start her chemo drug Methotrexate. We have been on it now for a year and her anti inflammatory. No more steroids. The hospital that we were getting PT and OT decided to play with our insurance and try to say nothing was wrong with her. It was so hard to even try to find any PT or OT that would touch her or even deal with children like her to help her. I wish there was more available to children like them. I really hope someday that more facilities learn how to help them. I never gave up I explored every avenue and educated myself. Almost every company on the list for pediatric help was not. No one dealt with small children under the age of 7. I did not stop or give up I would call write letters and so on. I finally found out that my own Town can help me. They have a school Roland Green. That helps children with many disabilities even thou Ava had physical they would still take her. It was a process but everything is they wanted to make sure they can help her. I know I came off very stressed which I was a single mother tring to help her child and every door closing on me is would do the same to any parent. The school took her and was able to help her this year. I don't know how to thank them enough the Teachers, PT and OT all the wonderful team that is there. They helped her and didn't make her feel different. To my family and all my friends who have all been so supportive and to the strangers who heard Ava's story Thank you for your support as well!!! We can not thank all of you enough from the bottom of our hearts. We would not be watching my little honey bunny enjoy life again and play. For parents out there going threw the same thing. I encourage you to never give up fight and if you have to fight some more for child because no one else will. To my new JA family I am happy I was added and the support and information from all you is helpful.

What a winter

It has been a few months since I last blogged. But what a roller coaster ride it has been for Ava and I. There are days I wonder why her. In August Ava had a procedure in her right knee. The steroids were not working or the methotrexate, or the maloxicam. she had to get sedated and they were able to remove a about 5ml of fluid from her joint and inject a steroid. I was so relieved it worked. The school she goes to offers PT and OT to her for Pre K which is awesome. Ava is still getting sick a lot but is pushing threw it. Ava is still getting her injections of Methotrexate once a week and taking her anti-inflammatory every day. The problem we face now is the short is which is sad and stressful as a mom. I hope the manufactures will knock off the nonesense and just make the drug.