A long time coming..

I know, it has been forever since I have written. I have no excuse I have just been a bit lazy. So The last time I wrote we were still in NC. Logan is off all his IV meds. All his blood pressure meds except the patch, and I think they will take him off of that tomorrow. He no longer has a central line they replaced it with a port. We ended getting home two weeks before Thanksgiving. It was so wonderful to be home in time for the holidays! I am so happy to be able to have all my boys back together. Logan is seeing Dr. Shaffer in Austin, she is a good doctor. I like her a lot I feel like she has respect for me, and knows that even though I may not have a PhD I still know what I am talking about. Logan also likes her, and that's important because Logan would't cooperate if he didn't.
Poor Aiden has chronic sinusitis, so I see a ENT appointment for him in the near furture. And Austin has pretty bad RAD. I have to give Austin two breathing treatmenst twice a day for the rest of the winter season. He has to do Xopanex and right after that he has to do a steroid breathing treatment, he has to do each of those twice a day. Hopefully he will grow out of it.
Right now Logan and I are in NC. We drove down here, and had to take a long route along the coast because the winter weather has been so bad. Ugh, I really hope I can go the shorter way home on Saturday. Today Logan had his evaluation. They see where he is on a cognitive level, and physical level. It turns out he has regressed physically. I expected that because he is a lot weaker from the transplant. Which is exactly what they said, so it's nothing to worry about. He's fine motor skills regressed as well, but again they said it's due to transplant so another thing they are not worried about. He did gain three months in speech, which is very exciting news, the were surprised and said that is very good! When I went in today I had very low expectations, I am very happy with the results. I look forward to the yearly evaluation. He is going to start back up with speech, physical, and occupational therapy when we get back home, so I imagine he will be much improved by July.
Last week my friend Penny lost her son Aiden. Aiden had a stem cell transplant like Logan. It's because of Penny that I found out about the transplant. And it is because of Penny Tricare will allow Sanfilippo kids to get transplants. She fought so hard, and finally Tricare gave in. When we went down to Duke for Logan's transplant no matter how busy she was she was always helping us in some way. When ever I was unsure of something or had a question she was always able give me advice, I guess what I am getting at is she is a great friend. Aiden was such a cute little guy. He had a few complications from the transplant. Last Sunday he they were watching a movie and Aiden passed away while laying with his mom. It was a shock to us all. Please pray for the Lopez family.