So Many Emotions

I am struggling here. Struggling for people to understand what we are going through. When I am asked what we are doing or what is going on with Jacob it is hard sometimes. Their words say they understand but their body language says a whole different story. I am going to say this once and then move on. I AM NOT CRAZY!!!!!!!! The way we are going about this is not traditional. I know this. However, we have gone the traditional route and it does NOT work. In fact, it makes it worse. You give him one round of antibiotic, just one, and we lose all of the ground we have made. What good bacteria that he has is completely wiped out. Also, Steroids do NOT work on him. We have gone an entire month doing very strong steroids and it didn't make any difference at all. We have seen improvement with the non traditional way. It's just a very long and lengthy process.

 Jacob has a bacteria that is attacking him. We don't know what it is. We could do a test to try to figure it out but it's currently not available and even if it was it would be very costly.  We went to see Dr. Edwards today. Can I just say, he is a fantastic doctor? Between him and the boys new pedi, Dr. Brinker, we have a good team on our side. Anyways, at Dr. Edwards office it was very apparent how worn out I am. I am worn out for feeling like I have to defend myself in the direction we are going with Dr. Edwards. I am worn out that his skin looks fantastic one day and in a matter of hours will blow up with infection. I am worn out seeing that the bacteria is spreading and causing more infection in new areas. I am worn out from spending at least an average of $200 a WEEK on supplements. This week alone we spent $500 on appointments, oils, supplements, and medical supplies. I am not exaggerating in the least bit. We have been very fortunate to be able to afford this, but good grief I feel awful for those who can't afford it. So much so, that I have been seriously contemplating try to set up a fund in someway to help parents with kids with eczema so they can afford this. It won't cost this much forever, but when you have as much damage as Jacob does, it gets expensive! I went off on a little tangent there, but those who know me are used to this. :) I am worn out busting my tail and not seeing the progress I think I should. I am worn out seeing my son hurting. I am worn out when I hear people say, "Well at least he doesn't have such and such disease." This is not just dry skin. This is more serious than that. Look at the picture below and tell me that this is just dry skin. This happened overnight while he was ASLEEP. 

When he gets wounds like this they become infected and flare up around it. This is overnight through soccer socks. Because of the picture above we had to do the picture below.

We wrapped his arms and legs (up past the thigh) in vet tape. It was suggested by Dr. Edwards and seems like it's working. We bought several different colors to make it fun for him. We are now on the strongest probiotic there is. It's usually given to just adults, but at this point we are needing to hit this even harder. We are also using Melaleuca and Argentyn 23 silver. Both are working and doing their job. It just seems that the bacteria is fighting harder. 

   With all the frustration there have been a lot of positives as well. For example, the parents at his daycare are very sensitive to what he can and cannot have. They will ask me what they can do for him if they are bringing cupcakes for the other kids, or they even bring snow cones instead. There is ONE flavor that we have found he can have. That was a big treat for him to be able to participate like that. I am also proud of how much self control he has. Today we were at BJs brewhouse and we found a gluten free, egg free, dairy free pizza crust. They were even going to do olive oil instead of tomato sauce since he is sensitive to tomatoes. We had it all worked out and Jacob was so excited. But then we saw it had garlic and yeast, both in which he is sensitive to. That meant no pizza. He wasn't sad for even a second. He just smiled and said "Can I have chicken and vegetables then?!" When I told him yes he was excited about that too! He has a lot to teach me in that department. 

   We are still fighting this and I have to accept the fact that we are going to have doubters and that's ok. It's the supporters that keep us going. However, I feel like I need to say something to those doubting us and questioning our decisions. Until you have been where we are, it's hard to say what you would do. This hurts Jacob not just on the outside but in the inside as well. He has a lot of damage that needs to be repaired. It's a long process. Even a few I am closest to have doubted and even accused me of not doing enough. This is something I feel deeply and very sensitive to. I am not saying this out of anger or to make anyone feel bad. I know people mean well...most of the time. It's just something that is emotionally and physically draining so a little bit of understanding would do a world of good. To those supporting us, again thank you. Your kind words and encouragement help me when I feel like I am about to burst into tears because I feel like I am spinning my wheels. Thank you again!