Rhys & Daddy had a great time watching the Dallas Cowboys win their first game of the season the other night. He was worn out from having more blood drawn that afternoon to have his liver enzymes tested again. We did get good news from the doctor in Houston - his direct bilirubin was down to 3.0 last week! We have to get more tests run tomorrow since they had to use all the blood they drew on that one test.
This week I have been really frustrated with the company that we are supposed to get all his formula and thickener from. They had the prescription from the doctor for two weeks and never got anything done. When I finally called and threw a fit, they said that they had been trying to get our insurance approval every day but just couldn't seem to get a hold of anyone. I found it hard to believe that they couldn't reach anyone at the largest insurance company in the entire state of Texas. I threatened to have a competitor handle our order. I even found another company that was ready to take care of it. And then magically they call me back and they can ship it out THAT DAY. Really?
So our order arrives the next day and it has two cans of the thickener and two cans of the plain formula. Unfortunately, he eats a mixture of 1/2 plain and 1/2 vanilla formula because the original apparently tastes (and smells) horrible. So now I have to call them back to figure out how to get the other kind.
Oh but wait. Today we received another delivery from UPS. It was 30 cans of thickener and 16 cans of the plain formula. I have no idea why in the world you would send that much when your customer is already unhappy with you. That is probably 8 months worth of thickener! We use about 5 tablespoons a day! Not sure when I will have time to deal with that again, but I am so glad that it has added itself back to my list. Do you think my phone call will get recorded and used for training purposes?
Our other appointments today included our dear friend Nelson, a photographer that gladly took some pictures of Rhys even though he refused to go to sleep or cooperate in any manner whatsoever. I think he got a few good ones but mostly it was him waving his arms around and opening his mouth oddly. At least he thought Rhys looked cute anyway.
Then we headed to the developmental pediatrician. Not gonna lie, it makes me nervous every time I hear all the things that Rhys could potentially have trouble with. There are so many unknowns but they seem very determined that his health problems leave him a big chance of not meeting his milestones as he grows. There were 3 boys in the waiting room that slightly terrified me. But the PA that saw Rhys said that he seems to be on track for his age and that his weight gain is really good. He was up to 8 lbs 4 oz! I was very surprised!
The big takeaway is that now we will start seeing a speech therapist who will hopefully come to our house and help with the feeding issue. The PA seemed very concerned that he can sometimes take an hour to finish a bottle, and she said there may be some oral exercises or therapy techniques that can help him learn to eat more efficiently. Then we will come back and see them again when he is four months old. I know we will be praying that he will continue to grow and develop just as he should so he can be just as smart and full of personality as his big sister.
Better go make the best use of my time that I can while Daddy is feeding him... I do want to say that Bo has been the most appreciative husband. He knows that right now I am bearing a lot more of the load when it comes to taking care of the kids, but I know it is only for a short while because of football. When he is home, he is so helpful even though he is exhausted too. I know these days will pass and we will look back on this in a blur. Some day we will finally make time for each other again. I am lucky that we love each other through all kinds of circumstances. Right now we are like a bear hibernating in the winter, just living off all the fatty reserves that he stored up earlier. In just a few months time, we will come crawling out of the "newborn" cave and start acting like normal bears again. :)
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