Chicken poxs yes chicken pox 2013

2013 was a rough year! For many of you who have a child who is 5 going into Kindergarten please be prepared. I thought we would be good I had her 504 Plan in set and updated. For Ava to get her PT and OT and the nursing staff was on board knowing all her medications. But we were wrong since Ava not got her immunization shots after the age of 3 she caught a lot of colds and had a lot of flares. One virus she got the night of Halloween and said she was tired and did not feel good. Was yes the chicken pox! Since she only got the 1 vaccine and never got the 2nd vaccine it came out like a rash and fever. On the nap of her neck and trunk of her body. When I brought her to the doctors office they thought it was just a heat rash. I then brought her to Boston Children's Hospital because she was scratching it and crying it hurts. Once in the hospital found it is the chicken pox. It comes out like shingles now since my daughter has only had one vaccine against it. Chicken pox does not look like what I grew up with at all. The small blisters with puss and you are told to go play with your cousins or neighbors so they could get it. Not any more and now young doctors and fellows do not know what they are looking at. We needed the old school doctors to come in and it is sad. I do understand the reasoning behind the vaccine to say 100 to 1,000 lives a year in the United States but how is it saving life's if other children who are auto-immune are now catching it and the doctors don't know what they are looking at? It is not fair in my opinion as a mother and for the medical staff. It takes months to get out of her system. Yes she had flares during it as well. The spring came and the summer and she was a trooper pushing threw everything.

Blister Cold

We live in Massachusetts and lately it has been Blistering COLD!! outside. I am talking about below 0 waking up with the temp being 3 degrees and with a wind chill of 15 makes for -8 degrees!! So imagine being a child who has JRA all I can say is pain, stiffiness. I try to protect as much as any parent, but I do have to work. I keep her heated mattress pad on all night, even thou she wakes in pain and ends up in my bed. I turn the heat up in the house to 74 degrees. I dress her in sweatpants and longsleeve shirts and cozy boots. But most of all a snow suite, yes a snow suite and I know we have no snow right now. It works, she can go outside all bundled up. I bought a winter coat that is warm but made sure it was wind resistance, water as well so if it snows or rains it rolls right off and its not wet. It has fur around her hood so cute. All I can say is its worth the money. Even thou Ava is the only child in the daycare in a snow suite besides the babies I have to remember she is even more fragile.
   Now tring having JRA and sleeping threw the night at 4 years old. In the past 1 1/2years i  have tried every thing in the books and what I have come up with myself. I have learned to give her a nice bath with some bubbles and add little salt rocks to the water lavender. Let her play and soak, next 10 minutes before bed I go and put the heated mattress pad on in her bed. We do our bedtime routine, and I tuck her in with her quilt plus 3 more blankets but when she falls asleep I take them off and leave the quilt. The mattress pad will stay on all night. If I see her sweating I will lower it. In the morning I will turn it up. I have to keep reminding myself even thou we are on a good path right now. I am lucky that the daycare lets her wear her slippers when her feet flare almost every day. Plus her preK, I am thankful for the PT and OT 3times a week. Remember if you live up here in New England we have to protect our Little Ones that have JRA or JA as well. They might look fine, but we still need to bundle them up and preserve them.

Injections

Well I have been able to keep Ava off the biologicals for now. Between having fluid removed and steroids injected into the joints. The anti-inflammatories, methotrexate, anti-acids, vitamins, and zolfran. Also with PT 3x a week and OT 3x times a week have made a huge difference. Finally 2 years later off the anti- inflammatories Ava is just dealing with it now on her own. But the Methotrexate injection is getting to her every week. We deal with the task of her hidding in her closet, in the tub, in our room, under the table. So upset she hyper ventilates. The smell of alcohol wipes makes her start to gag and yes she vomits from the smell. But we get the injection done still at the very high end dose but still not have to get off it just yet.
 Ava is so afraid of Alcohol wipe smells that my father was cleaning the window with windex and the smell made her freak out and start to gag she kept asking if she was getting a needle we said no. It is just cleaner not the wipes. Every day I think what are we going to her but this is our way of life and hers.

Winter

As the winter is here and with any person or parent that has a child with Arthritis knows it straight out STINKS. Lately I have noticed that Ava has had problems again with her pointer fingers, and thumbs and that her hands are swollen. Her little feet are as well, I am lucky that the day care allows her to wear slippers and that I am thankful for her IEP. It was worth the battle with the school system. Even thou Ava is not up to date with her immunizations nor got the flu shot. She has been doing pretty good. Living in New England is never easy on Ava. I have noticed when she is pale like a ghost and run down she has a flare going on some where but sometimes I just can not see it. I can tell because she becomes hot to touch also she sleeps alot more. When put to bed she will ask me to put her heating mattress pad on.
  Ava has grown alot since the start of fall and she has matured alot as well. I was told by her Rheum that children like Ava become more mature faster and are more aware of her body. I have noticed before she would cry or tell me when her body hurts now she just sucks it up and will make herself get out of bed to play or just lay there and try to comfort herself. As a mother when you notice your child is in pain and there is nothing you can your baby it hurts more then anything. Then it hurts that she has had it her whole life and that remission is a long far off distance. We tell Ava that this is her life and we talk to her way she is special but that doesn't mean the world has to stop it means that she will try harder but make an even bigger difference.

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!!!