The end of a chapter...

Friday was another clinic day. Ibrahim had been off of steroids for a week now. His platelet count was 170,000 which means that whatever has been going on is not steroid dependent. This basically means that he'll be able to hold his own (inshallah) in terms of his platelet count and so he doesn't require such frequent monitoring anymore. His white count and all other cell counts are also normal today.

We had a long discussion (yet again!) about whether this whole process was auto-immune or allo-immune and we still don't have a good answer. We've tested Ibrahim and myself for everything under the sun and never seemed to get results. So I guess we just leave it at that... After all, it is getting better.

Updates will be less frequent as are our doctor's visits. Thank you for all of your concern about our son and most of all, thank you for all the prayers in our time of need.

Normalization of counts

Ibrahim's counts on Friday were within normal limits. His platelet count is 225,000 which is wonderful. His steroids will be decreased again and by next Friday, we will stop them entirely, which is a huge milestone. We get to skip our weekly Friday visits at St Jude and will go back to check counts in two weeks.
We've held off on Ibrahim's routine immunizations until he's off of steroids. But otherwise he's growing and gaining weight. He finally gets to take normal baths since his central line is out.

Thank you all again for all the prayers and thoughts, with out which we wouldn't have come this far.

The removal of the central line

Today is a big day for Ibrahim.. we had his central line removed so he'll be a lot less restricted. His platelet count is 142,000 which is great! We'll decrease his steroid dose again and continue our weekly counts. The other great thing is that his white count is coming up to normal again which means he is at less of a chance of picking up infections. So mashallah, we're well on our way to recovery!

Friday, February 6th

Yesterday, Ibrahim had his central line repaired by interventional radiology. They sutured the defect in his skin and hopefully the line can be kept for a couple of more weeks while his steroids are on board so that he doesn't need to be stuck for labs. Ibrahim's platelet count today is 91,000 which is essentially stable. We will proceed to reduce his dose of steroids one more time (decrease his evening dose to half of his current). So we'll continue with our weekly labs. In the meanwhile, he continues to have a low white count. We're going to hold off on his regular vaccinations for now, since if he has a fever because of his shots we wont be able to differentiate between a line infection or something else.

Our other challenge these days is keeping Ibrahim away from his big brother who has a cough/cold/fever. Poor Hamza is being quarantined in his bedroom!

Wednesday, Feb 4th

Ibrahim had an unexpected trip to St Jude today. He had some oozing of blood above his central line site in his neck (at the point of insertion of his tunneled catheter) and so I took him in for blood work. His platelets have dropped a little to 85,000. A slight drop is not entirely unexpected with a decreased steroid dose, but we'll have to watch his numbers closely. We'll keep our Friday appointment to recheck his counts and continue the same dose of steroids (he's down from a three times a day dosage to twice a day). As for the line, we're going to try to save it. The radiologists will try to fix it by correcting the defect. So we have to go through NPO (nothing to eat) for four hours before the procedure again just in case he's not cooperative and needs anesthesia. So we'll be busy for the rest of the week.

Crossing 100K!!

We had another clinic visit today and Ibrahim's platelet count has reached 120,000. So now we will start reducing his steroids slowly and watch what his counts do. He still has to be cautious about being around other kids and particularly sick people since he has the central line in his neck. So he's missing out on his cousin's birthday party today. But inshallah he'll participate in many others in the future.

Again, all of our work up has remained normal, including the testing for penicillin antibodies and wiscott-aldrich. We'll check labs again in another week.

By popular demand.... a recent picture