Tiny Salutations

Tiny Salutations

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Thursday, December 17, 2015

Health Update

I have not done a health update in quite a while and I have been getting a lot of questions and requests. There has just been so much and it has been hard to process some of it. So here it is!

First off, we removed L from public school and went back to homeschooling. There was an incident (no airing dirty laundry here!) that made us lose confidence in people keeping him safe and healthy in school.  When we spoke with his pulmonologist, she said she absolutely agreed on removing him and that there was "no room for mistakes with a kid this sick". Speaking of which, he has been escalated to a more intensive clinic. This is a clinic at Children's that you can't just go to, you have to be escalated there once your child has exhausted the pulmonary clinic. It is a wonderful, actually, because there are six doctors there at once! It is more like a health conference on your child. He will be getting a few surgeries on his airway from top to bottom and these doctors will all be there to do the surgeries. The pulmonologist he was seeing decided it as best to pass his case onto a doctor more suited to the level of care he needs, and she will be at this new clinic.  He has also taken a break from his glasses to try to get a better idea of what he can see naturally. One of his eyes is lacking in development, and so he will likely begin patching soon. Patching is when you cover the good eye to try to get the bad eye to develop more and catch up. He has always had different eyes. He was born before he was finished making his eyes and was unable to use them at birth. Since he made his eyes after being born, they are not built the same as those born on time. They are anatomically different. We have heard before he may have albinism, as his eyes resemble those with albinism. His new eye doctor is less concerned about it, but we can't actually test him until he is older,

L is not handling the holidays well. He is excited and can understand what we are doing much better. And he lives and breathes The Grinch right now. He is constantly overwhelmed though. He did not handle Thanksgiving well. We went to a birthday party and then Thanksgiving dinner. He was overwhelmed for weeks. He was hurting himself, hurt through repetitive behaviors, and lashed out with aggression toward others. We did all we could to help him feel better, but it took a long time and, he is still not all the way there. Even just putting the tree up in our home has got him worked up. It is painful to see your child feeling so uncomfortable in their own skin. So for Christmas we a re trying hard to keep it low key. Lots of indulging in The Grinch and having Christmas stuff at home. No Christmas parties- even with family- and no big Christmas events in the community (except maybe Zoolights sometime!). We just want to keep him safe and someday if he can handle the holidays better, we may be able to do some of those things again.

I have been diagnosed with another autoimmune disease. That makes 6. It's called sarcoidosis. It makes granulomas (clumps of cells that look like bumps) in the tissues of any organ and damage that tissue. I had a huge part of the skin on my arm that was covered in it and found out through a biopsy. It may be in my lungs now or will be in the future. I also have lost quite a lot more of my field of vision. My left eye has much less of an area that I can see, but both have lost quite a bit. The doctor I had seen locally said it has gone beyond his expertise, so I have to go to a neuro-opthalmologist to hopefully get some ideas on what is happening and what we can do. I also tried physical therapy to see if I could learn to walk some, but the neurology physical therapist said there wasn't much they could do, that it was probably beyond a point of return.  We tried many different devices- AFO (a stiff brace that goes from your foot to just below your knee), KFO (nearly the same except from your foot to your hip), a walker, Lofstrand crutches (the crutches that hold on to the lower part of your arm)- and they decided a wheelchair really was best.  I have felt a little stronger some days, but much more painful. My lupus has reared its ugly head too. I have had so much joint pain lately that I have lost some of my range of motion. I am not able to dress myself anymore, among some other functionality I have lost. It is really quit a lot of pain. I have had times this month that I have been crying in pain, and I often find myself saying "I can't do this anymore", but I do. I guess it's just cathartic to say so. Many times when I try to move to adjust my position or use my arms, I automatically yelp in pain. It's no fun. My kidneys have begun to have trouble from lupus, along with daily fevers, hair loss, and lupus rashes. I have a very enlarged spleen from my autoimmune diseases, could be any one of them. So now I have to be quite careful so as not to rupture my spleen and hopefully it can be resolved some day. I don't have as much confidence in some of my specialists down here as many of them seem to say they've never seen some one like me and that there's nothing they can do. I am skeptical of some of the care I receive. I have also been painfully homesick for the last town we lived in.  I feel like that is the only place that will really feel like home.

Unfortunately, since my chemotherapy was not properly monitored, I caught some sort of viral illness. And it took me out badly. For three days, I didn't get up, didn't even need to use the restroom.  I just lay there in pain, without talking much. Now, over two weeks later, I am feeling much better, but still have not fought it off totally. I don't think I have viral illness still, but I have residual ear and sinus infections and possible pneumonia. I have been coughing up blood and blood has come out of my ears. When the doctor looked in my ears she said I need to see an ENT doctor, because they look "really bad" and very bloody. I couldn't hear for a little bit, but I can hear close to my normal again. I read lips to augment what I hear. If I can't see someone's face I often can't understand what they are saying. Then, L caught whatever I have, despite my efforts to keep him from getting ill. He fought it off much better. It did leave his respiratory system in shambles though. He has had breathing problems despite using the maximum dosage of his medications. He has had the more obvious breathing issues- stopping breathing during sleep and coughing when he moves around- and has also become weak and tired again, needing lots of breaks and lying down often. So, this is why I always champion staying home when contagious, because people like me on chemotherapy and people like L with damaged respiratory systems and weak immune systems are able to leave the house.

Here are photos of life in general since my October 30 Day Art Challenge. I have not included any Christmas celebration photos, so that I can make a Christmas fun post here!


Banana Slug





We made a bird feeder.
This squirrel was our main beneficiary of said bird feeder. He did not even scare off. We did get some birds too.
Playing games with his cousin and aunt
Playing games with his cousin
This is a camera L built so that he could take pictures with me. So sweet!


A bird I have never seen in our back yard. I ID'd it as a Northern Flicker (a type of woodpecker). It's pretty.
L knows many computer components. He is looking at a damaged hard drive here. I think he is destined to be an engineer.
Winter Maple