The Snow Household is quite entertaining these days! Mason has yet again, completely amazed us! Not that we would normally think that talking about going potty on the big boy potty would be something to announce, but since Mason is 15 months, we chalk it up as absolutely incredible! Last week before bath time, Mom was joking and sat Mason on the toilet as a joke. To our surprise, he decided to pee! We definitely thought that this was a coincidence. The next three nights, Mason continued to pee in the potty before bath! Incredible right?! Well much to our surprise, the next night he went poop on the potty! Now Mason is not a very inconspicuous person when it’s time to do his business, so we have capitalized on those times. Mason is now going potty on the big boy toilet at least 2 twice a day! He knows what he is supposed to do when we sit him on there, he does what he needs to, and then claps when we take him off and tell him good job! This boy is going places!
Another new thing that Mason has started to do is dance to music he likes. Now let me be clear about what dancing this little boy is doing. Somehow, he has learned to pop his chest back and forth to the beat of the music. It might be the funniest, most entertaining thing thus far. Of course, he has the cutest little grin on his face as he is dancing! Such a ham! He is absolutely the ray of sunshine in our lives every morning! Everyday we feel more blessed to call him our son!
On another note, I recently started reading such a great book, Shut Up About Your Perfect Kid. This book has really helped address things I didn’t even realize I felt and has helped me feel less disconnected to others with typical children. If you have not read it as a special needs parent or if you have friends or family members with a special needs child, it is so worth the read. We hope everyone is enjoying their summer! God Bless you all!
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!
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!
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
Wahoo! Mason did so wonderful today after his visit to Phoenix Children’s Hospital this morning for an exam under anesthesia. It is a constant prayer of ours that God will place a hand on Mason’s eyes to keep the pressures down in his eyes, to control what was once glaucoma. We were trusting that God kept Mason’s pressures down and that we would not have to face another surgery. It turns out that trusting and praying faithfully has proven to keep our little superhero thriving! Mason’s eye doctor is happy with his low pressures and we even got to talk about in a few short months to come, getting fitted for glasses and contacts that work together to allow Mason to see near and far! Few will ever experience the tears of joy and music to our ears that this conversations brings, as normal vision is something we often take for granted. Throughout our journey, we face the possibilities that Mason’s vision could worsen, or in the worst case, be lost forever. Hearing that he could soon move to a more advanced way of seeing is a blessing.
Recently Mason’s eye doctor has suggested that we patch his right eye a few hours a day, forcing his brain to only use his left eye to strengethen his brain usage of that eye. Mason was very hesitant to wear it at first, but as with everything else, he happily now wears it and continues on with his normal routine! He truly is a remarkable little boy who truly makes us thankful to have him as our son! He has recently hit so many new milestones that we will update you with an entirely other post all about that…stay tuned! Thank you again for your faithful prayers for Mason! They are certainly heard and answered! God is so great and we are humbled by the blessings He gives us everyday!
Today Mason had a huge milestone he has been working so very hard on we’d like to share! As I put pieces of cooked carrots on his tray that we normally have to put in his mouth for him to eat, he has learned how to feed himself! It brought tears to our eyes to see Mason be able to be independent enough to pick up the carrots and put them in his mouth all on his own! My is he growing up. We couldn’t be more proud of the little boy he is turning into! Yes, I said little boy as his infant days are coming to a close and the big “1” is quickly approaching in just a short month and a half. Mason’s achievements and milestone never grow old. He sure is a superstar in our eyes! Way to go Mason Man, our little superhero!