Rodrigo and Joy

I have been waiting a couple of months in order to do this update.

In late August when we flew to El Salvador to visit family we noticed that Willow was bruising easily. She had bruises on her legs, and her back. We first chucked it up to normal baby learning to walk and so froth, but when they kept on showing up, in conjunction with petechial bruising we knew something was not quite right.

It was now September and we took her to see her pediatrician and he immediately ordered blood work. The next 16 hours were really nuts, specially because of Joy’s history and how much we know about how really bad things exhibit themselves our minds really took us on a insane journey. The next day we got the results, which ruled out all the really bad things, cancers and other baddies.

We then got an appointment at a pediatric hematologist specialist. She quickly diagnosed her with ITP. In short Willow’s platelets had dropped below normal levels, normal is somewhere in the 50,000 to 100,000 range, Willow’s first test had her at 19,000 and her next test at 16,000. There was no treatment needed at these levels, we simply needed to make sure we didn’t expose Willow to any cuts/head bonks so that we can avoid internal bleeding and so forth.

At the end of the month her platelet count dropped to 8,000 which means that she needed an treatment right away at the hospital. We took her in so that she could get a infusion which is the recommended treatment (IVIG). It was an overnight stay, where she had to get a IV put in. Now putting in a IV into a 1 year old is quite the challenge, and it was one of the hardest things I have ever had to do. Willow wanted no part of it, and we had to hold her down while the nurses did their thing, imagine 3 adults holding Willow down, while another threads a neelde into her tiny vein.

The next morning Willow’s platelets had come back up to 56,000 so we went home and had her birthday party that weekend. The treatment is effective for about 6-8 weeks, at which point we need to start testing again to see where her platelets are at. The time has come, and her platelets have dropped and risen again. The latest test which we got results for today had her at 51,000, so we good right now, but we have to keep on testing.  We are working again with our hematologist and are going to seek out a second opining at a specialty center at Stanford.

We have a treatment path laid out and we are working closely with our doctors to make sure we do all that is possible to get our baby girl back up to 100% as soon as possible. Looking at Willow you can’t tell there is anything out of order, she is as vibrant as ever, as funny as ever, and eats just as much as ever. The one thing we must keep an eye for it her hurting herself, bonking her head, so this is a challenge, since at 14 months she is just running around as much as she can.

We chose to keep this information fairly close to home this time simply because it was a lot to deal with.  Now we are at place where we wanted to share it more widely. 

Here are some photos of her hospital stay.

Willow VIEW SLIDE SHOW DOWNLOAD ALL