I have found a career that I never would have found if not for Lil's illness and I love it. I can honestly say I wake up each morning so excited to go to work and do my job. I never mind working outside of my work day. It is all so invigorating. How lucky am I to have found this work in the midst of all of this? So many people I know who have medically fragile children either stay at their jobs and struggle each day trying to balance everything or quit their jobs and give up their careers completely. I was in that second category for awhile and now I have found a career that allows me to do great work and balance my life as well. I am one of the lucky ones. It has not been an easy road and we are still healing financially and emotionally from it but we are on the right path. I am still suffering from chronic migraines. My hospital stay last December did not do much to improve my situation. However, my issues are merely a side note. I am doing ok.
On the other hand we have Lil. Dr. Raab says he believes her disease is progressing. Just writing that gives me pause. We continue to increase her medication and her disease continues to fight back. September 15th Lil had surgery to remove her adenoids and tonsils, and place ear tubes. We also had an endoscopy done while she was sedated to see if we could find out why she vomits so much. The tubes were meant to help with the significant hearing loss she has been experiencing.
We did the tonsillectomy and adenoidectomy because the Pyoderma has started to attack the tissue not only on the inside of her mouth (which started last December) but her tonsils. She was getting full blown lesions on her tonsils. You can imagine how painful this could be. Our thinking was that if we remove the tonsils, we would remove that which is often inflamed and calm down the PG. The fear was making the PG "mad" so to speak. We used steroids to help us on that front and only ended up with about 4-5 mouth sores as a result. Unfortunately, it seems as if the PG is just choosing to attack the tissue around her tonsils; although it is not as often. She is also still getting mouth lesions. Now they seem to be coming at that spot where your tongue attaches to the bottom of your mouth. They are very hard to see in pictures. She also has lesions on the inside corners of her mouth right now but they often come on the insides of her cheeks.
The doctor who performed the tonsillectomy and adenoidectomy was amazing! We loved him and he had actually done our cousin's tube placement. He told us he found some strange pustules on her tonsils and biopsied them for us. Dr. R and I knew they were not going to grow anything because PG does not but it was good to have confirmation and to actually see these things up close.
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| Yes, I am using this as a way to shamelessly add a picture of my cousin who had tubes placed by said doctor but who is the cutest and sweetest thing ever! |
The scope showed nothing. No damage which is good, but also no reason for the vomiting. The tubes worked and she now has perfect hearing!
So what is going on now? Now the PG is finding its way or I should say her inflammatory system is. Her fingers have been swollen and sore so her arthritis is acting up for some unknown reason and her arms look a little swollen to us as well. She has actually been complaining of pain which is quite unusual for her so that tells us she is very uncomfortable. She has a large pustule on her thigh. This one is significant because pustules come and go for her these days but that is just it, they come and go. This one is big, full of pus and it is not going. I have to say it is making me cautious.
She has also been getting severe headaches. They come and go. Dr. R and I are trying to figure out what they are. We are going to see ophthalmology. However, I have a history of migraines and so does Chris. Another point is that one side effect of Humira and methotrexate is headaches. She has been getting them for awhile. A few years ago we saw ophthalmology for the same thing and even did a CT scan for it. These headaches are so bad, they are preventing her from doing things. She missed her little Thanksgiving Feast at school. She said, "Mom, I don't feel good!" and that was the end of that.
On top of all of that, we were getting blood work a few weeks ago and some of the numbers came back showing us that her liver might not be too happy. Dr. R (ever calm) says he wants me to wait a month which will be next week, and get it tested again before we jump to any conclusions because it could have been a virus or something. Love that man. But the numbers were pretty high and one of the side effects of both Humira and Methotrexate are liver damage. Also, remember Lil is young to be on Humira. They do not really know how it is going to affect her system.
When I say "love that man" I am dead serious. In our life you cannot freak out if liver numbers are supposed to between 5 and 25 and they are 195. Also, for some of my friends that is nothing. The other reason I love him is that he is always there for us. I cannot say enough about that...
And yes, Lil has started school! She goes to preschool 3 days a week for only an hour a day. We are seeing how that goes (this was the advice of the NIH) and we can increase from there. She is going to Montesossori Learning Center and they have been phenomenal in working with us and taking care of her. They even managed to fill out a report card on her! The school and Lil are dying for more.
Lil's other big news is that she started getting caught up on her vaccines. We gave her two last week. I am hoping her current situation has nothing to do with the vaccines, it really should not.
Poppop took us out to dinner after vaccines and this is what she ordered!
Thank you all for your continued support. We could not live this life without your love and understanding. If you know me at all you know how excited I am for the holidays. The holidays were very important to my mom and I love to honor her memory that way. It is not about the gifts to me but the whole two months of good will and good cheer. Just think... two months of thinking of other people! It is awesome. Anyway, I hope you all enjoy it.
