Most of you know about Asher's diagnosis that rocked our world 12 months ago. He was diagnosed with Glutaric Acidemia type 1 almost exactly one year ago. On July 7th 2012 to be exact. Through a series of events which I will describe in a moment, today he was "undiagnosed"!! We went to his regularly scheduled doctor's visit with his geneticist and were shocked and amazed when she said "he does not have Glutaric Acidemia". First of all before anything else, I would like to say PRAISE GOD!! He is so good. I can't even begin to describe how good He is, and has been to us.
Now, how did this happen? About 4 months ago Asher had a skin biopsy to confirm his diagnosis. He had this because they tried to confirm it with a DNA test and it was normal. They had originally felt that even if the skin biopsy was normal, they would still be worried and have to look for a different disorder and would continue treating him for GA-1. This lead his Dr. to say that we could choose whether or not to do the skin biopsy, but it was minimally invasive and wouldn't change much as far as treatment. So, Richie and I decided that we didn't need to put him through anything else. Then at his next routine 3 month check-up she had changed her mind. After consulting with some more experts she wanted to proceed with the biopsy just to see if they needed to be looking for something else. They took his skin cells to see if they would produce the enzymes that he supposedly lacked. This particular test took 3 to 4 months to get results. I have to be honest and say that I was not particularly hopeful when he had this test done. The Dr. seemed like more than anything, she expected a confirmation. To me there was the fear of the unknown, and what if they had to put him through more tests to find something else. So when the Dr. came in the room first today (which usually we see a nurse, and then a dietician before she comes in) I was scared. I was expecting something bad. Then she says "I am so excited to tell you the good news, he does not have GA-1"!!
How did they get this wrong? Well without losing you in a bunch of medical mumbo jumbo that I don't understand myself, here is the short answer. Sometimes with other disorders they see what is called a "transient" case. Which I think basically means it was there but then it is gone and there isn't really an explanation. They haven't seen this in GA-1 because GA-1 is so rare anyway and they haven't documented any cases. They now have (including Asher) 5 kids in this scenario. That's it, 5 cases ever. There haven't been any publications on it, but now with this information and having 5 kids we hope to work with the doctors to get this information out there. Now with all of their medical explanations, or lack there of, said, I also have to say what I believe. GOD CAN DO ANYTHING! Could He have healed Asher, YES! This isn't something that just goes away. There is not a cure.
Was there a reason for this trial? Like every trial, I believe that yes absolutely. I don't know for sure God's plan for Asher, or His reason for anything, but what I do know is this; I have learned to trust the Lord in the past year especially, but also in the last 2 1/2, more than ever. We had to totally turn this over to God and trust Him to keep our baby safe. We had nothing else left to do. The doctors could not reassure us that even with all of the medical intervention that he would be ok. We had to fully rely on God in a way that we as humans often take for granted. We committed Asher's life to the Lord, knowing that God gave him to us for a reason. I know that he has a big bright future ahead. I have to say here that it was much easier for Richie than me. I always want to control things, and especially with my kids, I don't like not knowing that they are safe, or feeling that I am in control.
What's next? Well we have to slowly get him back to a regular diet. We have to make changes slowly and they will watch and see how he reacts. He is off all his medicine effective immediately!! We will take him off his special diet formula over the next few weeks. In a few months he should be on a normal diet. This alone is huge!! He will not have to count everything that he eats. He can eat dairy, meat etc. Most of all, the greatest relief is that we don't have to worry that he will get sick and have to be hospitalized or worse. He is normal!! However, it is not true, as daddy says, that he isn't special. Much to the contrary, he is so special. He changed our life, strengthened our faith, and taught us never to take anything for granted in this life. Everyday is a gift. And Richie, I am still going to baby him a little longer, even though he is a "normal" baby. Now I should say that they will monitor him to make sure it doesn't creep up again, or cause any more problems, but I don't see anything coming up. They ruled out the other 2 possible genetic disorders already.
This is one of the happiest days of my life. Of course the birth of all of my babies was a great blessing and incredibly joyful. I am so thankful for each of them. But with Asher, I was always just a little scared. After Eli died I didn't think I could face that again. Parents always worry about the safety of their children, but when you know what losing one feels like, that thought is always somewhere in the back of your mind. If I hadn't been able to give that fear to the Lord and trust Him to take care of all of us, I think it would have eaten me alive. Not only that, but we wouldn't have had Asher. We thought that after Eli died we couldn't go through that again, so it wasn't worth it to have another. How blessed we were that we gave that fear up, and trust in God. That's not to say it wasn't there, and it didn't creep up on me from time to time throughout my pregnancy and the last year. It definitely did. Each time God lead me through. Asher was and is his child. He is only given to us for a short time on this earth. And what a privilege it is to be his mother. The same goes for the other 2. I feel just as privileged to be their mother. Thank you Lord for this glorious and wonderful gift. All glory to God from whom all blessings come.
James 1:17
"Whatever is good and perfect comes down to us from God our Father, who created all the lights in the heavens. He never changes or casts a shifting shadow."
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