Well Rayne and I
survived another trip to Birmingham on Tuesday. It wasn't too bad, I
think. I'm still adjusting to some of the news and we are still waiting
for lab results to come back.
In general Rayne is doing okay. She is almost back up to 23lbs (she had lost a little weight during this last illness), and she is just shy of 33inches. Both stats are on the growth chart!! Wahoo!!! Rayne was also healthy for her appointment which was surprising for the Pulmonologist. He asked what I did and I told him Rayne just finished an antibiotic a few days before. The doctor laughed, smiled and said "Well that makes sense". I teased back that she'll probably be sick in less than a week, that's just how it works.
Which brings us to the main point of our story. Given Rayne's first round of lab work, her reaction to the Pneumonia vaccine, and the fact that this last cold didn't go away until she had a steroid and an antibiotic she definitely has an immune disorder. How bad it is we have to see how the repeat lab work comes back.
Now when most people hear immune system issues they think autoimmune disorders. Autoimmune disorders attack cells that are supposed to be in the body leaving nothing to attack the bad cells that invade the body. Making the body weaker and unable to handle illness well. Rayne has the opposite problem an Under reactive immune system.
Under reactive immune systems don't activate when a virus or infection invade the body. The virus or infection can sit and incubate for days or weeks before the immune system kicks in. But of course by then it's too late to kill the virus without the help of antibiotics and in Rayne's case steroids too. The other down side to the under reactive immune system is that it may not react to a vaccination properly. So if if Rayne is to get a vaccine it may not protect her from getting the illness.
What does this mean for our little family you may ask? Well it means we have to be a bit germ-a phobic.... urg. Fred and I have always been great believers that kids need dirt. That kids need to play outside, that it's okay if there is a little dirt under their nails every so often, that the house doesn't have to wiped top to bottom every week with bleach, bussed restaurant tables are clean enough, and if a kid at church as a runny nose it's okay to play with them. Well we have to change our way of thinking. Yes Rayne can still play outside but hands have to be washed/ and or sanitized a lot more. We have to work on keeping the house and pets cleaner. Wipeing down the places we sit and eat when we go out. The biggest things is we have to minimize Rayne's exposure to illness. Fred and I have to do the best to stay healthy, and not pass on anything we may pick up. We have to be careful about the kids play with Rayne and if they have runny noses or lots of coughing we have to try and keep her away. Pretty much we just have to act like parents of a newborn, but with an active toddler. Yup no challenge there...
What this means for our friends and family. Be prepared to have us come behind you to clean, to ask you to wash your hands, to see if you have any hand sanitizer, or not stay very long if you or your child is sick. Oh and we may smell "weird" because of the essential oils we use to try to keep everything at bay. We don't do any of this to be offensive but we have to do everything we can. As it is Rayne will probably be starting a low dose of daily antibiotics to help boost her immune system. But the more she is on antibiotics the more resistant she will become. Amoxicillin is already non effective, and she has a long life to live yet.
In the next week or so the lab results should be back and we will know if anything else needs to be done. As for now this is our new normal.
In general Rayne is doing okay. She is almost back up to 23lbs (she had lost a little weight during this last illness), and she is just shy of 33inches. Both stats are on the growth chart!! Wahoo!!! Rayne was also healthy for her appointment which was surprising for the Pulmonologist. He asked what I did and I told him Rayne just finished an antibiotic a few days before. The doctor laughed, smiled and said "Well that makes sense". I teased back that she'll probably be sick in less than a week, that's just how it works.
Which brings us to the main point of our story. Given Rayne's first round of lab work, her reaction to the Pneumonia vaccine, and the fact that this last cold didn't go away until she had a steroid and an antibiotic she definitely has an immune disorder. How bad it is we have to see how the repeat lab work comes back.
Now when most people hear immune system issues they think autoimmune disorders. Autoimmune disorders attack cells that are supposed to be in the body leaving nothing to attack the bad cells that invade the body. Making the body weaker and unable to handle illness well. Rayne has the opposite problem an Under reactive immune system.
Under reactive immune systems don't activate when a virus or infection invade the body. The virus or infection can sit and incubate for days or weeks before the immune system kicks in. But of course by then it's too late to kill the virus without the help of antibiotics and in Rayne's case steroids too. The other down side to the under reactive immune system is that it may not react to a vaccination properly. So if if Rayne is to get a vaccine it may not protect her from getting the illness.
What does this mean for our little family you may ask? Well it means we have to be a bit germ-a phobic.... urg. Fred and I have always been great believers that kids need dirt. That kids need to play outside, that it's okay if there is a little dirt under their nails every so often, that the house doesn't have to wiped top to bottom every week with bleach, bussed restaurant tables are clean enough, and if a kid at church as a runny nose it's okay to play with them. Well we have to change our way of thinking. Yes Rayne can still play outside but hands have to be washed/ and or sanitized a lot more. We have to work on keeping the house and pets cleaner. Wipeing down the places we sit and eat when we go out. The biggest things is we have to minimize Rayne's exposure to illness. Fred and I have to do the best to stay healthy, and not pass on anything we may pick up. We have to be careful about the kids play with Rayne and if they have runny noses or lots of coughing we have to try and keep her away. Pretty much we just have to act like parents of a newborn, but with an active toddler. Yup no challenge there...
What this means for our friends and family. Be prepared to have us come behind you to clean, to ask you to wash your hands, to see if you have any hand sanitizer, or not stay very long if you or your child is sick. Oh and we may smell "weird" because of the essential oils we use to try to keep everything at bay. We don't do any of this to be offensive but we have to do everything we can. As it is Rayne will probably be starting a low dose of daily antibiotics to help boost her immune system. But the more she is on antibiotics the more resistant she will become. Amoxicillin is already non effective, and she has a long life to live yet.
In the next week or so the lab results should be back and we will know if anything else needs to be done. As for now this is our new normal.
