Thank You

As we are approaching the end of what has been one crazy year, we want to say thanks to each and every one of you that has contributed to our family in one way or another. And I must tell you, we have received more support than we ever could have imagined. Whether it be prayers, gifts, love, words of encouragement, a shoulder to cry on, or someone to share a laugh with — all of it has helped us get through some tough times, and it has meant more to us than we could ever put into words. The year 2011 has surely been a roller coaster for the Snow Family, and our family and friends remained with us through it all. They helped us up whenever we fell, and for that, we are forever grateful.

When Mason was born, Tiffany and I used to ask ourselves and God why all of this happened to our son. We no longer do that. We don’t feel sorry for ourselves, we don’t complain about the countless trips to Phoenix Children’s Hospital, we don’t compare Mason’s development to other babies, Tiffany doesn’t stress when she puts in or takes out Mason’s contacts, it doesn’t bother us that we have to mix formula and a thickener into his breast milk with a hand blender, we don’t care that we have to give him medicine at just about every feeding, and because Mason could never nurse Tiffany continues to soldier on with pumping, day in and day out. We do all of this without complaint because Mason is truly the greatest gift God could ever give us. We look into his eyes and don’t see Lowe Syndrome, we see a beautiful boy filled with life and happiness. And that is the amazing thing, despite everything he has been through, this kid of ours is truly happy. A true testament to what life is really all about.

On another note, Mason had a wonderful 1st Christmas. He received one gift a day early, as his first tooth popped through on Christmas Eve! Praise God for that! He had been miserable leading up to it. Mom (I mean Santa) wrapped Mason’s presents in tissue paper so he could open them more easily, but he was more interested in trying to eat it. Nevertheless, he now has more clothes than Mom and Dad combined! He also got some educational toys to help with his development and an iPad 2 to better help his communication. We are so thankful to everyone that helped make Mason’s 1st Christmas a great one!

With that being said, the Snow Family wishes you all a healthy and prosperous 2012. Thank you all again, from the bottom of our hearts. God Bless.

Where do they learn this stuff?!

It has been awhile since the last post. Mason has been doing so great and we have been so busy with him! It’s so interesting and amazing to see how babies take everything in. Although I am sure we say no quite often, Mason has mastered letting us know he is finished with his food or juice by shaking his head no! I am not sure where the heck this kid learned it, but he knows what he wants and when he wants it! Mason has also learned how to “high five.” Now we are not certain when other children learn this skill, but we think it’s pretty incredible that our boy gives high fives when asked! He has also been working so hard on sitting all by himself. When distracted with a toy, he is completely fine all on his own. Once he notices no one is holding him up, he thinks it’s funny to throw himself back as he knows we will always catch him. It’s actually pretty neat to see the trust and bond that have developed between us. He is very well aware Mommy and Daddy will always catch him when he falls.

Mason has recently been trying to eat new textures. He really enjoys baby cheese puffs and crackers. Although the cracker is entirely way too big for him to eat whole, he tries anyway. Mommy makes all of his food and he has started eating pasta. Being as he is half Italian, it comes to no surprise that he really seems to enjoy it! It is so cute to see him chew. Teething is still getting the best of our little superhero, but his gums definitely get the job done. It’s incredible seeing him growing up and learning new things!

Mason saw see his pediatrician last Monday for his 9 month well check. Can you believe it, 9 months already?! He moved up to the 20-50 percentile, so we are absolutely thrilled with his growth progress. We noticed a little scar tissue in Mason’s left eye. After seeing his eye doctor, we are scheduled to go under anesthesia on December 29th for a possible surgery. We are not certain if we feel it is absolutely necessary to go in so quickly so we might be postponing his surgery until January. Although we are not experts, it seems going under 7 times in a 9 month period might be a little much. If we can avoid a surgery for a bit, it might be in Mason’s best interest. We will keep everyone updated on whether or not after consulting with his eye doctor again, he will need surgery next week. Mason’s kidney doctor requested some follow up lab work to monitor whether or not the dosage of the supplements she put him on is accurate and working. Of course, when we took him for a blood draw, his veins disappeared and they were not able to draw his blood. Poor guy had to go through two sticks and digging for his veins for nothing. We will have to consult with his kidney doctor to coordinate getting a draw with the IV team and Phoenix Children’s.

As always, we ask that you continue to pray that Mason’s kidneys continue to function properly with as little supplements as possible, that the cyst in his eye does not have to be operated on anytime soon, as well as guidance for us! We are really looking forward to spending our first Christmas together with our little angel boy! Since having Mason, the holidays are so much more spirited. I am sure Santa will be spending quite a bit of time wrapping all Mason’s gifts as he has been such a good boy this year! Merry Christmas to you all! May God bless each of you this holiday season!

Here are 2 videos of Mason shaking his head no:

A Big Sigh of Relief…

I imagine we would be really over-protective parents had Mason not had Lowe Syndrome, but I think we are even more protective since he does. We have figured out the system enough to push until we get what we want and at the end of the day always remember that we get the last say as we are his parents. Often times before we had Mason people would say, “You will know what’s best for your child above anyone else.” This common phrase always seemed to exclude one type of profession and to me, that would be anyone in the medical field. This has proven to not be the case in most instances when it comes to our little superhero. That common phrase is now a reality. As Mason’s parents, we absolutely do know him best and know exactly what we want for him which includes what tests we want ran and when.

Unfortunately, a possible side effect of Lowe Syndrome is seizure activity. To us, this is something that we do not take lightly and want to have every heads up I suppose you would say, in knowing if any seizure activity is going on. We requested that Mason get an EEG to assure there was nothing going on that we didn’t know about. As we weren’t aware until this syndrome, a seizure is not always identifiable as an epileptic one as we once thought. This makes it even scarier to identify whether or not there is anything going on. Monday, we took Mason to Phoenix Children’s to have an EEG done. He was such a perfect little patient and did everything he was supposed to. Trying to have an 8 month old do exactly what is asked of him is merely impossible, but for superheroes, nothing is impossible as Mason proved. He fell asleep as the tech was placing the probes on his head and slept just the right amount of time they preferred he did. As we waited 24 hours for his neurologist to call, we were waiting on pins and needles. We haven’t had such a good track record with finding out things over the phone. Thankfully this time was an exception. There is absolutely no seizure activity thus far in Mason’s brain. Definitely knee dropping news to be thankful for. All and all, Mason Man is continuing to thrive and flourish. He has found his boy parts and thinks it’s funny! Mason also thinks he is a big enough boy to feed himself when we give him his solid foods. We fall in love with him more and more each day. We cannot wait to celebrate the up coming holiday season with the best baby in the world! May you all have a wonderful Thanksgiving holiday!

Happy Halloween!

Growing up as a child, special days like Halloween are something we each look forward to. As parents now, these special days are so much more. We had so much fun dressing Mason up as a little tiger. It was difficult choosing a costume as he would have looked cute in anything! Mason surely enjoyed his first Halloween! He even kept his whole costume on the entire night! We were hesitant to take him trick or treating as he is so little and cannot eat candy. The great idea hit that we should use this opportunity to raise awareness in the community for LS while taking Mason door to door. We have made postcards that give a brief description of Mason’s story and LS as well as his blog and the LSA website. It’s really great talking with others in our community and having them meet Mason. It certainly helps that he was the cutest tiger around 🙂 We are thinking of printing off a bunch of cards and having an awareness day around the valley, hoping our family and friends will partake. We are quite motivated to raise awareness in hopes to one day find a cure for this awful disorder. None the less, Mason was an angel as usual!

We met with Endocrinology last week because Mason’s pediatrician was concerned his hormone levels might be imbalanced. We are happy to report that his blood work came back normal and Mason gained a pound in 6 days! We really liked his Endocrinologist! It’s always great meeting with doctors who have something good to report! We will see Nephrology on Wednesday for Mason’s follow up. Praying for a similarly positive report!

 

  

Dad Raises LS Awareness

In an effort to raise awareness for Lowe Syndrome, I participated in my company’s Give2Gether campaign. American Express has the campaign every October in which AMEX matches every dollar donated by an employee to a charity. I actively sought out the lady in charge of the campaign for my building and asked how I can best get the word out for Lowe Syndrome. She asked me to write a summary of why I give to the Lowe Syndrome Association…which I gladly accepted.

The result? My story got published on our AMEX internal web site’s main page and a poster was put up in our building. We have roughly 3,000 employees in my building alone and over 7,000 employees in Arizona! The day it got posted, I received several emails from my colleagues indicating they were pledging money to the LSA. Even if only a small percentage of people actually read it, at least those people now know what Lowe Syndrome is…so I’m happy about that. All-in-all, I think it was a success. Below is my posting:

I received some pretty incredible responses to this from my co-workers. Here are some of them:

” Glad to see your keeping an upbeat look on things. Thanks for sharing your experience and letting people know about Lowe Syndrome. Wish I could say I understand what you’re going through, but I can’t. I can say you are doing more than most. Keep it up.”

” Amazing, beautiful story Adam. Extremely touching. Thank you so much for sharing.”

“Thank you for sharing your story on why you give. It was incredibly inspiring to me!”

“Mason is absolutely adorable! Your ‘Why I Give’ story was very touching. I donate to an organization that is very close to my heart, also. After reading your story, I was encouraged to add a one-time donation to the Lowe Syndrome Association as well. What a great way to build awareness and make a difference; thanks for sharing.”

Terrible Teething!

Poor Mason Man has been in such pain with his teeth trying to come in. He often sucks his bottom lip in and cries out at night in pain because they hurt so bad. We have been trying to give him something frozen around the clock and recently started using teething tablets, but nothing seems to help. Of course being the great little boy that he is, he never misses an opportunity to laugh and smile through the pain! Praying for some relief for him soon! Mason has to go to Phoenix Children’s Hospital on Thursday to get his pressures checked under anesthesia. He will also be getting blood drawn for his nephrologist and endocrinologist. Please pray for low pressures and normal levels!