Could it be... he is allergy free!!??

Well, we finally did it... we did a food challenge with Erik for his dairy allergy. It was one of the more scary things we have had to do with him at home. Our allergist was confident that he would be fine, but it took us about 6 weeks to work up the courage and have our timing right to actually test him. The directions were simple... give him a 1/2 ounce of milk and watch him for to see if signs develop within 30 minutes. Then, give him and ounces and watch him for another 30 minutes. Needless to say it was a LONG hour. BUT he did great!! Not one sign on his body, no hives, no swelling, nothing. So now we are to simply start adding it in to his diet. So much easier said than done! We are seeing some digestive sensitivities, like gas and a slightly raw bum, but nothing else. So we are taking it easy and letting him decide if he even likes the flavor of milk. If he incorporates dairy into his diet and we don't have to use his epi-pen for a year then we will be epi-pen free!!

We have scheduled an appointment with Erik's eye specialist to discuss surgery to straighten his eyes. We don't know much about what it may or may not be able to do about his vision, but we will at least get information. Plus, if we do the surgery it will be one less "thing" that is different. That will be nice for when he gets older.

We were hoping to move Erik to his next step with his braces (a brace the size of a high top shoe), but his PT and the orthotic team thought he needed a little more time. His PT would like him to master a few more skills in the braces he has (stand up from being seated without assistance and squat to pick stuff off the floor). He is getting really good at picking stuff off the floor, so now we are focusing on him standing up without assistance. This one is hard because he stabilizes himself with whatever he uses to stand up with. It will just take more walking and core building, but he can do it.

We are so proud of his progress... at school he has a little routine in the morning. He starts in one section of some bins and takes out a few toys and puts them on top of the cabinet, then he walks around to a huge cardboard play house where he goes inside and plays, he then ends by going to the "kitchen" and plays with the cupboards and the refrigerator. His teacher says he has a buddy that he "meets" in the kitchen and they play together! I can imagine him opening and closing, opening and closing, and opening and closing the cabinets.

At daycare, they offer a huge variety of food for lunch. This has been a huge blessing, because they have gotten him to eat a ton of different food. Who knew Erik would eat lima beans, or baked beans, or pasta. We have taken the things they do there and slowly incorporated them at home. We are very happy about his increase in variety. It gives us encouragement that he will eat more than just pureed food for the rest of his life. He is now down to one meal a day that incorporates baby food!

I realize this is a rather unemotional post, but there is so much progress to be discussed :)

(This is Erik with Flat Nolan - they went to check out an airplane at Dad's work. They are sitting in the cockpit)

The death of a dream....

The title seems kind of harsh, but the reality is the feelings that go along with the realization that whatever dreams we may have had for Erik ARE harsh. We feel like we have gone through all of the emotions that someone would go through when a loved one dies. I have been in denial. I have been angry, depressed, felt guilty, and hopeless (this one I tend to get stuck in). I believe in my heart and my mind all of the Jesus answers we are told to believe - everything happens for the good of those who love him... For I know the plans I have for you... Be still and know that I am God, etc.; however, I can not forget what we have been through. Occasionally, my feelings are stirred by looking back and never forgetting, but I also see the importance of truly knowing and accepting what we have been going through. The one emotion or feeling I think I have forgotten to deal with is how scary this journey is. We have no idea what Erik's potential is and yet, we are driven to dream and hope. It is a dangerous request of our hearts to continually hope for the best and dream for his future. I find myself hesitating to move forward, because of the fear of having to grieve the death of our ever-changing dreams for Erik.

We can not deny the goodness and joy brought into so many lives because of Erik; however, we have been called to care for him and raise him to be who God intended him to be. While this is the call of all parents, there seems to be so much pressure to get this one right. So, dreaming and hoping for Erik has become a different picture. We dream of the little things in life and hope for Erik's best, not what we depict to be his best. I know I have talked about this before, but for some reason, this idea is heavy on my heart.

We have been blessed to find a community of people on Facebook where parents of children who also have disorders of Chromosome 6 can find support, encouragement, and answers. While there is no doubt that we have benefited from this group my heart breaks for the families who are going through much tougher situations than ours. .

We will continue to walk this tightrope of fear and faith, but more often than not my dreams die and my faith has to step in so I am reminded to keep going and not give up on Gods reality for Erik. It is a constant readjustment...