I would like to introduce you to my mystery babies. The babies that look healthy on the outside but something isn't quite right on the inside. The babies that have some doctors either scratching their heads or sending us on our way saying, "they are fine" The babies that have pulled us straight into the war of judgment as some believe that we are making a mountain out of a mole hill. The babies that smile and play and deal with their symptoms like champs. The babies who God has used to teach me so much about myself. The babies God gave to us and said "I chose you."
Since I blogged about this last we have made some changes. Once we got both girls on the meds and noticed a huge change in their behavior and health, and watching all symptoms subside, we noticed Jaden was also having symptoms. He would wake up in the morning and just lay there. When we took his blood sugar, out of curiosity, we found that he was in the 50-60 range. The morning he passed out on me I decided to start to be his voice.
Since then, we were sent to Cincinnati Children's Hospital with all three kids. All three were seen and Jaden was tested for Primary Carnitine Deficiency. When the test came back negative the doctor decided he only wanted to follow up with the girls and not so much Jaden. My heart broke, as I felt he was the one they really needed to see, but I went along with it.
Psalm 27:14 says to "wait for the Lord; be strong and take heart and wait for the Lord." So much prayer had gone into this I had to believe that the Lord was going to come through, even if I didn't really see HIM in this decision , I had to believe He was there.
We went off for that follow up appointment this week and upon talking to the doctor, Jaden came up in the conversation. When I told him that he has had three low blood sugar spells since we last saw him in August, the doctor asked if it would be okay if he saw Jaden that day too. I said, "that would be wonderful" So back out to registration we went to get Jaden registered. I talked with the doctor while my husband was taking care of all of that. He suggested that he felt that primary carnitne deficiency was not the diagnosis here for any of them, but he feels that it is some sort of Metabolic Disorder.
All three kids were tested for several metabolic disorders based on how their body is breaking down fat. Jaden was tested the most as he is the only one without meds in him. The doctor also decided to go ahead (without the stressful awful test of running him to the hospital when he gets sick) and put Jaden on the carnitine as an experiment and see if we notice a change in him as we did the girls.
We don't know what is going on with them, and we know that there is a possibility that we may never know. The doctor suggested that in the future he may want to take them all off the meds and see what happens. But as of now he is not going to do that. He feels it would do them more harm than good and he said he felt their bodies were not strong enough for such an experiment with them being so young.
We should hear back from the doctor in about a week as to what the tests show and what to do next.
Our kids are a mystery because for the most part they are healthy. They are growing, and developing. But every once in a while, they are not okay, they are not normal and in that moment God reminds me that our fight is not over, that even though they appear okay on the outside, they are not okay on the inside, and our fight continues.....
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