Monday, July 30, 2012


It was an unusual feeling to pack the van for a planned procedure this morning. Since we don't do surgeries (only if it would be an emergency) for Jacob any longer, we typically don't have to pack up everything for a day and go. We do Jacob's doctor's appointments, and the urgent rush to the ER when Jacob is sick.

It was nice to have the time to make sure all bags were actually packed. It was nice to be able to bring some food and drinks. It was nice to be able to bring things to entertain us all.

Jacob is spending this Monday in the Infusion Center. I was always thinking that the only place Jacob won't visit in the hospital is the NICU and the 7th (oncology) floor, but that is not the case any longer. We do go to the Infusion Center, if we have any issues with his medi-port, and for years to come, we will now check in every quarter for a 3-hours Pamidronate treatment.

The drug Pamidronate goes straight into Jacob's blood (thank God for the medi-port!), and gets infused at a very low rate. Simply put, Pamidronate takes the Calcium in Jacob's body and puts it into his bones. It is today the most effective treatment for Osteoporosis. With Jacob's brittle bones, this drug has become very important in his management and care to avoid Jacob for breaking any more bones.

Unfortunately Pamidronate does come with several pretty common side effects. Kids often get flu symptoms or goes into status epilepticus. With Jacob's underlying mitochondrial disorder, noone wants him to get any of the side effects, so they do all possible precautions before each treatment starts. In addition, we're doing some extra meds for pain and respiratory inflammation for several days after the treatment to protect him.

As with anything new for Jacob, we're always a little bit nervous. We don't know exactly what to expect. We don't know exactly how he will react.

I will update you all on how our little guy is doing this week. Keep your toes and fingers crossed that this will prevent future fractures, and that we can avoid flu and seizures.

Jacob is busy watching the Olympics!

Much love,


  1. Praying the Pamidronate will work and that Jacob doesn't have any adverse reactions ro the drug! Kaci's had Pamidronate several times before -- it has been awhile but I don't recall any problems with the drug. He looks adorable watching the Olympics!!

    1. I am glad Kaci did well with Pamidronate! Jacob is actually doing really well today too! We are hoping it will continue that way this week!

  2. Thinking of you!!! (-: And he does look adorable watching the games...

    1. Thank you! Still doing good today...