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Some Call it Naive, We Call it Faith

Every one of us has a purpose. A reason why God placed us here. Although at times rocky, our paths in which He has created and chosen for each of us becomes evident. As parents to a child with a diagnosed syndrome, everyone and anyone offer their experience, advice, opinion and expectations. We have learned to take it all with a grain of salt. Why? The reason is quite simple. We know that God has a purpose for Mason in this lifetime. Mason’s purpose without a doubt is to inspire. We were and still are told that we shouldn’t expect Mason to be doing certain things at certain times. That this terrible syndrome would more often than not, hinder all belief that he will even be able to do what you and I take for granted everyday. When faced with every reason to give up, we have faithfully believed that God has placed Mason here for a very specific purpose. We have not turned away from the Lord as it seems that would be easier at times. We have FAITHFULLY prayed that Mason would be the miracle, that he would make a difference. We have not, for even one second, let those beliefs about what Mason won’t do, stop the constant optimism and drive we try to instill in Mason each day. Mommy always tells him, “Persistence pays off!”

Mason Anthony is the most inspiring little boy we know. Although he doesn’t know differently, he pushes through everything. When there is something in his way, he gets past it. If something is out of reach, you better believe he finds a way to grab it. The odds are more or less not in his favor in most situations, but by the grace of God, we have become stronger, more faithful as a family and in God for it. Without Mason, that faithfullness would never be as strong. Our son has taught us that God is faithful and that He does answer prayers. He has taught us that slow and steady really does win the race. We are forever honored and humbled to have such an inspiring son. We thought we would share a glimpse of how will and determination pays off! God Bless you all!

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It Happens So Quickly!

Wow, it’s been a crazy month and a half since the last post. Thankfully, it’s because our little superhero keeps us on our feet. We would normally begin by giving everyone a recap of what has happened since the last post from start to finish, but this accomplishment just can’t wait until the end. By the grace of God and against most odds, our little man is learning how to bear weight on his legs and stand. This milestone is one that literally stopped us as parents dead in our tracks and had us in tears, on our knees, thankful to the Lord for His faithful hand that he places on Mason. Just when we accept the fact that Mason developmentally could be significantly delayed is when he shows us that he is such a little fighter. Things we take for granted everyday, like standing and walking are brought to such appreciation when our children are slow to come to these milestones. We are so proud that our smiles from ear to ear are more a less permanent. Our boy is growing and so quickly, right in front of our eyes. He never stops surprising us and certainly never stops trying. Mason has so much determination and persistence and truly is an inspiration. We become more and more proud everyday and are just loving every minute of this baby who is quickly turning into a little boy!

Mason’s first birthday went well, although we don’t have a sweet tooth on our hands! Mason was kind of hesitant to eat his cake, but once he tasted it, he humored us by eating a few small bites. What we do have on our hands is a strawberry fanatic! If we let him, Mason would eat strawberries for breakfast, lunch and dinner! Mason’s overall eating habits are fabulous and we couldn’t be more thankful for that. We recently really started to target his calorie count as he wasn’t losing weight but wasn’t really gaining either. We now target 1000 calories a day, and he seems to handle that just fine. He is also gaining the toddler attitude, “I’ll do it myself!” Mason is so intrigued with using the spoon to feed himself. Although it ends in a disaster of a mess, we try to let him explore as much as possible. Finger foods he eats well on his own, but the softer stuff we leave for the spoon. Sooner or later, our smart cookie will catch on and be eating all by himself in no time.

Although it’s always hard taking Mason for routine lab work, we are really thankful that we now have all things in place for it to be a smooth process. The IV team meets us at the lab, they get in with one stick, and we are on our way out the door 10 minutes later with minimal pain for Mason. We met with Mason’s nephrologist this past Monday for our 3 month follow up and a report from his blood work. The glory is all His as God really is answering prayers. Mason’s labs are all wonderful and she is THOROUGHLY pleased with all his counts. As parents of an LS boy, we aren’t naive to the fact that Mason’s kidneys may one day not function as well, but we are more faithful that the Lord blesses us with miracles everyday. We count our blessings and give thanks for every positive follow up appointment that doesn’t add more supplements to Mason’s list. Mason has learned to appreciate follow up appointments as he just gets to sit there and look cute, while Mom and Dad do all the talking. He just loves the fact that his doctor thinks he is so cute! We will continue to follow up with nephrology every three months.

We want to give a tremendous THANK YOU to our friends and family that have been there through everything with us this past year of Mason’s life. The ones who have held us when we’ve cried, engaged in joy when Mason hits milestones, given us words of encouragement, prayed for us, never faulted us, and ones that despite everything, have completed loved us unconditionally through it all! None of your support has gone unnoticed. We love you!

Blessings,

The Snows

Oh, The Places He’ll Go!

We want to first apologize for not posting as frequently as we would like. Sometimes getting caught up in the daily routines of life makes you forget to just sit down, relax, and write a blog post to fill in family and friends of Mason Man’s progress! Sit down and relax? We wish. There doesn’t seem to be much time for that lately in the Snow household.

Everyone always says “time flies,” but you don’t really understand that until you have a child of your own. We cannot believe our son is about to turn one. You would think this year would seem like an eternity with everything we’ve been through, but that is not the case at all. This year has absolutely flown by! With that, right now, our biggest hurdle is getting everything in order for Mason’s 1st Birthday party this Sunday. We are having it at our home because Mason seems to feel a lot more comfortable in familiar settings. Admittedly, we are a family of procrastinators, so we still have a lot of work to do!

As for Mason, by the grace of God, he continues to thrive. He is still “technically” a little behind developmentally, but he continues to amaze us each and every day…and that is an understatement. When we think back to when he was born and look at where he is now, it’s almost like we are looking at two different people. In a sense, we are a little sad that he is turning one and moving farther away from the baby stage, but to see all the progress he has made makes us the proudest parents in the world. Here’s a little list of some of his current progress:

  • For months after he was born, he had very little movement in his hands and his thumbs were basically locked into the palms of his hands. Now, he literally will grab anything and everything in sight and he constantly has to have something in his hands. Mom’s hair is definitely one of his favorite things to grab hold of.
  • He’s not crawling yet, but he is getting ever so close. He prefers the “roll” method right now, and uses it every single time we set him on the floor. We can’t take our eyes off of him for a second before he is gone.
  • He finally is able to hold his bottle by himself and drink. This is a pretty big accomplishment for him and it also gives us a little extra free time. And even more remarkable is that Mason, with a little help from his therapist, can now drink his juice from a straw. For a kid that was hooked up to a feeding tube through his nose when he was born because he didn’t have enough strength to suck, I would say this is quite impressive!
  • Mason Man isn’t saying mama or dada regularly yet, but he is starting to show us a lot of non-verbal communication. The newest one is raising his arms when he wants to be picked up. I’m sure that is a very common thing with most kids his age, but to us, it’s just another encouraging step forward in his progress.
  • As of this morning, Mason officially has 6 teeth! Chompers over here is sprouting teeth like wild fire.
  • We took Mason to Phoenix Children’s Hospital this morning to get a Barium Swallow Test. They do this to see how he handles his liquid intake, basically to see if all the liquid he swallows is going down the right pipe. We were hoping that he would be able to stop taking his food thickener, but that will have to wait. He is still at risk for aspiration, which means liquid could bypass his esophagus and go down into his lungs. Not a good situation at all, but he will get another test in 4 to 6 months to see if it’s getting better.

That’s all for now. And we promise to try and update this more often…this past month has been hectic. We hope all is well with everyone. God Bless.

The Snow Family

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!

 

  

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!

A Heartfelt Video

This video isn’t about Mason Man…or is it? When you are born with a disability, or if you are parents to a disabled child, you become a member of a very special group. We are new to the special needs community, but what we have seen so far is truly inspiring. So many kids born into a bad situation, whether it be physical, mental, or both, that seem to look past the disability and live life to the fullest the best way they know how. So many parents who were thrust into a situation that would ultimately change their entire lives, for better or worse. Parents whose lives revolve around their special needs child. Parents who have a passion to make a change…for their child and for the way people look at and treat their child. The majority of parents and children didn’t have a choice to be a member of the special needs group, they were forced to. This special group is truly filled with special people, and for that I am truly grateful to be a part of it. They have a voice and it is loud, but I often wonder if anyone’s listening.

But every once in a while you see or hear about something that makes you think: “Maybe this world isn’t so bad after all…maybe people do care.” This, to me, is one of those moments. Outsiders of our special group coming together as one to lend a helping hand. Truly inspiring. Truly amazing. And truly what we need more of in this world. Enjoy.