Day two of Logan's six month studies.

Well today was another BUSY and LONG day! But it's all good news. First we started the day off going to clinic..gosh I miss Duke. Anyway, Logan got his six month labs done, they took a lot of blood. Everything came back normal, except his FK level. It was low, which means his body is most likely metabolizing it to fast so they just have to up the dose. And we will get his immunity studies back at the end of the week. Dr. Paul said today, that he is comfortable saying that Logan is in the clear for GVH, which is awesome news. Also, Dr Paul thinks that it is possible that some of the enzymes are passing the blood brain barrier because Logan has gained so much speech after transplant! That news was the greatest of all today, but I still don't want to get my hopes to terribly high. After clinic Logan had to get a Brain CT and sinus CT, oh boy let me tell you how much fun that was... Logan fought so hard. He had to stay still for about five minutes so we had to use straps to hold him down, of course that's nothing new, the child is strong! But he was ok, as soon as I started singing to him he calmed down. After the CT we went to get his hearing test. Turns out Logan has an ear infection in both ears, but his hearing test still came back completely normal. Dr. Paul also said that we do not have to go back for the nine month studies because Logan is doing so well. We don't have to come back until July. So far this trip has been full of good news, it makes me so happy! Tomorrow Logan has to get an EEG and a eye exam, so hopefully that will go well too!
By the way if you are noticing a ton of grammar mistakes, it's because I don't have my editor, Billy to look this over:) I am the Comma Queen!

Aiden Lopez Life with Sanfilipo

Penny asked my Sis and I if we could make a tribute/awareness video for Aiden. Here it is..

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.