Category Archives: Medical

Posts related to Mason Man’s ongoing medical treatment. Vision, kidneys, brain, etc. all included.

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

Another Answer to Prayer!

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!

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!