I had previously asked at the clinic about getting a helmet for Tristan, but that doctor didn't think he would wear it. His current hematoma (goose egg) has not been healing very well. He hasn't had factor over the weekends, so the last few Mondays it has been much bigger and discolored. That same doctor was concerned that perhaps he was developing inhibitor (immunity to the clotting factor) or that there was a crack in his skull there. The other (much older/more experienced) doctor was there the next day and thought rather that Tristan must keep bumping it, and he had a nurse produce this sweet little helmet. He does pull it back throughout the day, but it's not hard to put it back in place, and now, Monday morning, the hematoma looks about like it did on Friday - woohoo! They have had a hard time getting an I.V. going to give Tristan the factor. They usually end up sticking him more than once. They give him candy and let him play with their phones to keep him happy while they do all this. The younger doctor said on Friday that the blood vessels of Caucasians are much more friable and fragile than those of Orientals (his word), which is why they have such a hard time with Tristan. He said that that isn't necessarily documented, but the "old doctor" (his words) observed that when he worked in the U.S. for 20 years.
So, on Friday the doctor said that starting this week Tristan should only need the factor every other day, which is great news. We've already drained $5000 from our savings to pay for all the factor and doctor visits (about 95% of that is the factor - the fees are nominal). It should be reimbursed by Tricare, but that will likely be a long, arduous process with multiple denials and losses of paperwork. We've finally made the decision to not apply to stay here for a third year. Two years of this situation in particular is long enough. We can see now why the hospital here didn't want us to come. We absolutely didn't have these issues with Hunter when he was little (he also has hemophilia). Apparently they are slowing way down on letting families come here now, because the schools, hospitals, parking, etc. are all over capacity. The elementary school has 2,000 students, yikes! It is hard to get an appointment at the hospital.
Looking for a good time?
I left Kyler's hair alone for about a week, but buzzed it off before church last week. He shed many a tear while I did it, but it only took half a minute. I think he looks like a real bruiser now.Yesterday (Sunday) Hunter woke up vomiting, so Dean stayed home with him and Tristan, and I took Kyler to church. Kyler and Tristan do play a lot during the day, which is nice. I guess it's not the end of the world that Kyler missed starting school this year (BY ONE DAY!). I don't know that he is well behaved enough to have gone anyway.
I have already received my code to get my 50 Christmas cards from Seehere, but we need to get a snapshot of us. I was hoping to yesterday when we were dressed for church, but that didn't work out.
5 comments:
Wow, what a royal pain - I don't blame you for not wanting to stay longer!! I'm glad you got the helmet (it's cute, too!) and that he's healing up a bit finally. Poor guy with all those IV's!! :( Not fun. I hope you get reimbursed from Tricare before too long!!
Oh wow, I had no idea you guys were having to pay up-front for his treatments. That really stinks! I hope you survive the process of getting reimbursed:)
Is there any way you can make it back to the US sooner?
We wouldn't want to come back any sooner - they might make us pay our own way if we did.
You are such a incredible mom. I know you are probably frustrated but you seem to keep your cool and your children know you love them. This is a wonderful adventure you are on! Hang in there. You will have memories to last a lifetime.
I just heard a good quote- "having money is like being blonde, it isn't essential, but it is more fun".
Enjoy those babies, enjoy the orient and keep that darling helmet buckled on tight.
Love you all tons and miss you like crazy! xoxo
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