So much has happened....

Last weekend Pastor Rick said that he has learned so much from his daughter, and it really got me thinking. I can honestly say that I have learned more from my children in 2 years then I have probably learned in a lifetime. They have taught me so much more about what life is really about than I ever imagined. I watch (then reprimand) Isaac attack Christopher with full force and as long as Isaac hugs or kisses him after, he forgives and forgets. Isaac has been through so much physically, emotionally and spiritually, and yet he still tries his hardest in every situation and is unwilling to just give up. I am so encouraged every day after spending it with my two little munchkins.

Wow how do I even recap all hat has gone on? Our family has been put through a lot, and yet blessed 100 times even more. I am so thankful for so many wonderful family members, friends and new acquaintances. I'm healing quite well. My right wrist is doing amazing! So much for all the supposed pain I'd be going through :) My left wrist still has quite a bit of pain. It feels as if someone keeps poking it with a screwdriver all day, but totally doable. My knee is doing so much better. I can finally climb stairs. It doesn't look so pretty, but I can do it. I forget that I can't do certain things, like getting up off the floor or squatting. But all in all, I can't complain at all!

Christopher is doing great. He is a champ! He is trying so hard to be a big boy. He can count to 10, knows about half of his ABC's and if he keeps up with his doctor skills, wants to be a doctor. Many days I find the two of them in the bathroom with just their diapers, their small couch and Christopher telling Isaac to lay down so that he can listen to his belly and chest. It is so precious!

Isaac is a tough boy. I am so proud of him! The last two months he had lost weight. His Short-Gut Docs were getting a little worried. Also we have been doing monthly testing of his vitamin B12. When they did the test in November, after giving 1,000mg (an adult dose), his numbers should have been over 200. Yet they were below 150. Vitamin B12 is what helps you grow and most importantly it provides nutrition to the brain. If someone to have a B12 deficiency, it would eventually lead to brain damage. So Isaac's doctors referred us to a new doctor who we saw today. He is a great guy! He's also incredibly knowledgeable. I consider us so lucky to be close to Boston, and even luckier to have such a wonderful team of doctors who all talk about Isaac together. Every one of his doctors is on the 'in' about Isaac. This helps us so much!

Dr. Barry (the new doctor) drew me a beautiful picture of the entire body. He showed me how/where things get processed, what we are missing and what we need. So here's the deal to the best of my knowledge as to what Dr. Barry tried to explain to me. We did a urine test last month to see how much Isaac was excreting of his B12. The test is very sensitive and it came back normal. Yet every blood test shows that his B12 is very low. Thus this leads us to one very probable cause; his Transcobalamin I (TC1) is low. This is the binding agent that breaks down the B12 in the gut. Isaac is missing the valve in the intestine that not only slows down food, but breaks down the B12 with the TC1. This is a very new thing for the US to learn about. Until recently, no one really studied it. If in fact Isaac does have this, he will be one in less than 50 people in the world would be diagnosed with this. If this is true, then we have to figure out how to up the TC1 so that Isaac does not get brain damage.

What I haven't spoken of lately is that Isaac is doing so well. He's walking and talking, but we do still have brain issues to deal with. Some of the things that could happen from lack of B12 have already happened. So we really do not have any room to play with. We need to get this healed ASAP! Today they took a blood test from both Isaac and I to get a sample of our DNA. They are sending it to a cancer institute in Ohio that is studying this right now. These are the most up-to-date people in the US on this right now. They took Isaac's to see if his TC1 is low, and they took mine to see if this might be something that I have and passed onto him. If by some chance Isaac doesn't have this, then unfortunately the poor guy will endure lots more testing because they have no idea what else it might be. We won't get the results back until after Christmas, so until then we are going to keep going as planned. Isaac gets his B12 shots twice a month now. Our pediatrician is looking into seeing if the insurance company will allow me to give them to him, rather than bringing him in. Who would have thought that in in two years, ten months, all my business skills would go out the door and I'd take many lessons in biology.

I'm annoyed by this, frustrated that once again I have to say, "UGH! I'm tired of it being my child!" But at the same time I actually have peace in my heart. I understand all the complications, I 'get' everything that can happen, but I'm not willing to accept it. A few days ago I wrote a status that I just wanted to understand how Isaac's body. Now I understand it, so I can move to the next step of fighting for it. Please join Brian and I in fighting the fight for Isaac. We are not going to accept that our little man will get brain damage from this. We know that a full healing is going to happen and that our little man will one day grow up to have a wife and children :)

Oh and also, please if you decide to google anything....please do not ask me any questions about it or try to give ideas. We have the best specialists in the world working on this right now and we trust God 100%. We couldn't ask for anything more.

All our love,
Brian and Jenn