Thank you friends and family!

I am going to start this off by saying thank you to everyone who voted for Team Sanfilippo in the Vivint Gives Back Project! We took second place overall and brought home a $100,000! Because of all of your votes we are closer to finding cure.
Things have slowed down quite a bit for us. Logan is now off of his FK! He no longer has a suppressed immune system. Since he is off his FK he also went off a couple of other meds, so now he only has to take 9 medications instead of 13! Logan is still doing amazing, he is a huge ball of energy. I am ready to go to bed as soon as I get the kids in bed at night.
Aiden started school about three weeks ago. He is doing great. The first week and half I had to fight him to get him on the bus, I literally had to pull him into the bus! But now he gets right on and isn't anxious anymore. I am surprised at the amount of things they have to learn in Kindergarten now. His teacher said its the new first grade. Some of the things he is learning I was taught in second grade. He has homework every night, that he loves to do.
Austin started speech therapy to work on, what I like to call his Boston mixed with German accent. He is doing very well with it, he corrects himself now without me telling him to. Austin is still getting used to Aiden not being home with him. He has Logan, but he can't really sit there and have a conversation with Logan. It brings tears to my eyes right now typing that. When they were babies I always pictured them doing everything together, but they can't even have a simple conversation. It really does break my heart. But enough of that! All I can do is do everytihng in my power to help find a cure for Sanfilippo Syndrome.
A couple of exciting things happened since the last time I wrote. News 8 Austin, now known as YNN came out and interviewed us. The story turned out amazing, I hope a lot of people got to see it and learn from it! Also, just today I got the opportunity to tell a group of PT students about Sanfilippo Syndrome. They got to meet Logan and play with him, Logan had them running all over the place!
It's amazing the difference Logan is making in so many lives without even realizing it. Yes, he has an awful disease. Yes, I wish he didn't have it. But the fact is he does, so we are making the best out of it. We are educating people, reaching out to people who would have never known about it. Logan brings so much joy into people's lives and all he has to do is laugh! Even though I may not have Logan for long, I am so lucky to have him in my life. He has taught Billy, his brothers and I so much. He is an amazing little boy, after everything he has gone through he is still so happy. And maybe we just might be able to find a cure in his lifetime, that would be the most wonderful thing ever. That's the good thing about having hope, it's what is keeps us moving forward.
"Hope is not a dream but a way of making dreams become reality"
~ L. J. Suenens


Logan with some of the PT students today.

Below is the link to the news interview.
http://austin.ynn.com/content/280075/family-hopes-to-bring-awareness-to-rare-genetic-disorder

ARE YOU STILL VOTING?

We at Team Sanfilippo have one week left of voting,
http://www.bit.ly/fight4rare

We already enough of a lead that we will most likely win the 100K for the Eastern Region. One member came up with the idea if we can win the 250K we could donate the 150K difference towards a Pediatric Rare Disease Conference in DC in 2012. (for all rare diseases) If we can do this, then every Rare disease will benefit in some way. Conferences are many times the lifelines for many of us. Either way, Team Sanfilippo will most likely win the 100K with the lead we current have for the region, but we've voted as a Team if we can do this we want too, and Vivint approved this as well. So if we win the 250K we can help more than just Sanfilippo. Won't you take time to vote and share with your friends and family. It's only one week now, and there are about 20,000 votes between us and the leader of the entire competition. (we are 2nd) They are a strong group and have much support from celebrity figures and musicians. So it might be tough as we have none of that, but if you really believe we can and have a heart for it. It can be done.
See: www.curesf.org

for our official letter and more info if you need it.
Thanks so much, this conference would be of benefit to many.

VOTE, VOTE, AND VOTE SOME MORE!

Team Sanfilippo Foundation, a non-profit medical research foundation started by a group of Sanfilippo parents, is in the running for $250,000.00 that we can use for research to find a cure. The contest is called the Vivint Gives Back Project. People can vote using Facebook and twitter for one charity per day. The charity that has earned the most overall votes will then be awarded $250,000. The remaining charities that earn the most from each of the regions will each receive a $100,000 donation. Team Sanfilippo needs as many votes as we can get! right now we are in second place we need to be in first to win the $250,000! So make sure you vote, vote, and vote some more until August 27th!
The link to vote is: http://bit.ly/vote4logan
You can got to www.curesf.org for more info about the contest.

The Hill Country News also did a story on Logan, and is helping us spread awareness about Sanfilippo Syndrome. They are also helping us spread the word about the contest. The story turned out great!
http://www.hillcountrynews.com/news/article_b4d96614-a7ef-11e0-ba4d-001cc4c03286.html?mode=story

The Round Rock Leader also did a story on Logan! I love the way this story turned out!
http://www.rrleader.com/main.asp?SectionID=1&SubSectionID=1&ArticleID=27620&TM=79472.2



My sister, Natasha and I made this video for the contest!

Summer fun!

I can’t believe how long it has taken me to update this. But life has been crazy, fool of appointments, traveling, and surprises along the way! Let me start with Logan. Logan is doing great. We had some scares here and there but nothing too major. For example, his asthma flares up every once in a while, which is always a little scary. And the biggest scare of all was when he fractured his skull. He was at the park and he fell off the bench and hit the back of his head on the concrete. Afterwards he was a little bit unsteady but nothing else. I was still worried and called Dr. Shaffer and she said unless he throws up there shouldn’t be too much to worry about. The next day he seemed a little more tired than usual and he acted like his head was sore, but nothing to really worry me too much. That night he woke up screaming and holding his head and then he started getting super lethargic and started throwing up. I was pretty sure he was having an adrenal attack, so I gave him a solu-cortif shot and took him to the E.R. They did a CT of his head and found a fracture. Billy and I were both surprised, but glad we knew what the problem was. I feel so bad sometimes; if he could just speak he could have told me right away that his head hurt!
Soon after that incident it was time for Logan’s yearly studies at Duke. I drove up to NC, and Logan was so good for the drive up! It was so nice to see all the familiar faces again! And we even visited 5200 and saw all the wonderful nurses! All of his test results came back normal. The only thing that was off was his thyroid. He has hyperthyroidism and now he is on meds for it. Logan’s endocrine doctor thinks it will just be temporary. We were not able to get a eval done, with Dr. Escolar this time around. I would have liked to see what level he is at now, but we will get that done another time. I think Logan has gained some skills. Dr. Paul said that we can start weaning Logan off of his FK! This is such great news! The FK is really the only thing that’s suppressing his immune system, once he is off of the Fk he can get off of five of his other meds. So this is a huge step! Tomorrow Logan will be one year post transplant, it’s so exciting! We are so lucky to have such a strong little boy, I don’t know many adults who can go through what he has and still have a smile on their face!
At the end of June we went to the Pacl family reunion in Colorado. We had so much fun. It is so nice to get together with the whole family, the Pacls are one of a kind and I am so happy to be part of this awesome family! Colorado is beautiful. I honestly didn’t want to leave. The mountains are something to see, and the air is so fresh! We were staying in Buena Vista, I can’t even describe how beautiful it is, and not even pictures will do it justice. We had a great time!
Aiden had to get surgery when we got home from Colorado. He had to get his adenoids removed and his sinuses widened. It was about a two hour surgery, he did fine. After the surgery his doctor said his adenoids were really bad and it was amazing he has not gotten a lot of ear infections. Aiden’s only had one ear infection in his life, but he always seems to have a sinus infection. Today, he is still recovering from his surgery, he is doing great and loves being waited on hand and foot.
Austin is staying healthy and bratty! He has a speech evaluation next week because sometimes people have a hard time understanding him. But he is still my trouble maker and full of energy.
The kids are really enjoying summer right now. They are swimming, going to the park, and they really love the new water park at the Williamson County Park! Tomorrow is Logan’s 1 year transplant anniversary! I am so thankful that he is healthy after all he has gone through. We are going to celebrate with a Wow Wow Wubbzy cookie cake!

Doing Great!

Well, it has been almost four months since I last wrote, not a whole lot has happened.
Logan and I made the drive back to TX, which was not bad. We took the shorter route and got home in two days. Since we have been home Logan has finally started OT,speech and physical therapy and he is thriving!
Logan is doing so great! He is pretty much back to normal. He plays outside with his brothers and runs around everywhere, he is so happy and lovable!
One thing that is not real great but not to terrible, is he was diagnosed with asthma. He has an steroid inhaler that he has to use every morning and night. And when he starts having a coughing fit he has a Xopenex inhaler to get that under control. It just seems unfair that on top of everything else that's going on with him he has to get asthma to along with it. What's interesting about this is, Logan could have developed the asthma because the cord blood donor could have it. We did have a bit of a scare a couple of weeks ago. For about two weeks straight Logan was not himself. He wouldn't eat and I had to force him out of his bed. At the beginning of the first week I took him to the doctor, and they figured it was asthma related and as soon as we started breathing treatments he would perk up, well that was not the case. So at the end of the second week I brought him in and again they said it was asthma related, which made me angry because I was already giving him a lot of breathing treatments and he was getting steroid treatments. There was something else going on and I felt like they were not taking me seriously. I ended up emailing Dr. Paul, in NC to let him know what was going on, he emailed me back and said that his Cortisol level was probably low and the docs should give him a large dose of hydrocortisone right away. By then, we had already been sent home. So Dr. Paul had me give him 10mls of hydrocortisone and not thirty minutes after he was up and running around the house and eating. I was so angry at the doctors here for not catching that, he was on his way to having an adrenal attack. Ever since that, nothing major has happened and that's how I like it! We will be going back up to Duke early June for Logan's yearly studies.

Aiden is officially signed up for kindergarten. I can't believe he is going to be five years old, time really does go by way to fast! He is so excited about going to school, he keeps asking me if he can ride the bus. I'm still not so sure about that, I'm going to have a really hard time letting him go. I guess it's a big step for the both of us in a way.
Austin is doing great! He is such a clown, and he is sneaky! I have to keep an eye on that one, if there is something that no one is supposed to mess with, he'll be in it! I'm signing him up for some kind of sport in the fall, I think he will be amazing in anything that he chooses. He is so fast and has so much energy, and loves doing anything athletic. I am so proud of all my boys!:)
Make-A-Wish came by last week to meet Logan and the family. They are going to send us to Disney World! The boys are super excited... we are all excited! We should be going sometime in January.
That's everything for now! Hopefully nothing new will come up with Logan, besides more talking and gaining skills!

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..