Tuesday, January 19, 2010


I haven't written for a while, and the reason is that things are pretty ok right now. I am so used to report on big dramas, and now we have been home since January 2nd. We're busy with Jacob's care, actually very busy, but we're home!!!
Jacob IS getting over his pneumonia. The suctioning is a little bit less, and the cough is easing up. Dr. E. thought he looked good today! This is the second doctor's appointment in a row she's telling me this.
We also met with Jacob's metabolic doctor today. He's the head of metabolics at Children's, and "the best of the best". He's always referred to when it comes to metabolic disorders from doctors around the country. He doesn't see patients anymore, so we know we're lucky to see him. He spent a good hour with us going over Jacob's last results from the liver and muscle biopsy, and it's always so enlightening. Jacob's mitochondrial disorder is a combination of complex I, III, and IV. There is nothing wrong with Jacob's actual mitochondria (he actually produces 200% mitochondria all the time), but it's in the translation of the mitochondria into protein where the problem lies. The question is what bad gene Joakim and I are both carrier of. He's still not giving up on finding the answer, but also thinks that our lives or Sarah's for that matter might not change dramatically if we know what gene it is or not. I couldn't agree more. He's also happy that only one of Jacob's major organs (brain) is involved in his disorder so far, but reminded us that it can change quickly. Liver always being the one they watch out for.
We also talked about life and death. This man never shies away from the hard topics. He's also all about logic, and it was refreshing to get his perspective once again.
We then saw Dr. C., Jacob's neurologist, in between our appointment with Dr. E. She was so happy to see how well Jacob is doing right now. We tweaked his seizure plan a bit more again, trying to use less Ativan.
We also found out that Jacob's weight is still going through the roof, so Jacob's calorie intake got quite a revision once more. The second one this year. I won't complain. It's pretty hard to carry Jacob for longer stretches at this time.
I am often thinking what a great medical team Jacob has, and how much we enjoy working with them all. I remember how impersonal our appointments were in the beginning, and now how Dr. E is completely involved, if I am going to Albuquerque next week or not. Or our Belgian doctor saying flat out that the reason Jacob is still alive is the excellent care we're giving him at home. I guess it comes with the job and the parenting of a child like Jacob. It's all or nothing.
I am also excited about the familly leadership training I started on Saturday. It's quite a commitment thru end of June, but I am pretty sure I will be able to make a difference. One of Jacob's nurses in his clinic is attending the class as well, and we're already looking into how we could start a sibling support system at Children's, since it's basically non-existant today. So exciting!!!
My dad is landing probably about now. Joakim is on his way to pick him up. We get reminded pretty often to live each moment at it's fullest. Some days are easier, some days are harder, but we sure feel that we're living each day!
Take care, Maria.

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