Friday, January 25, 2013

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.

Wednesday, January 16, 2013


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.


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.