I cannot believe how fast time has gone! This feels like a
whirlwind! So much has happened, and my life allows for so little “me” time,
that I haven’t had time to update my blog. So here is a peek at what has been
happening these last 6 months!
Rylan is doing AMAZING! He is 16 months old and so much fun!
He is crawling up a storm and cruising along, nearly walking, but not there
yet. He has a mouth full of teeth, 14 to be exact, and is eating like a champ!
He does 3 meal times a day, and still has to do some feeds through his G-Tube
as we had a small hiccup in his progress. During a repeat swallow study, they
detected some aspiration with the thin liquid consistency. The doctors agreed
that since he had been drinking liquids for almost 6 months, had good respiratory
health, and was growing well, that they would let us continue to do feeds and
liquids by mouth, but still use the G-Tube. He is working with PT and OT to get
his strength up and get him walking and talking.
We had some genetic testing recommended by his pediatrician,
and in February, it came back that he had a chromosome 1 deletion. We met with
a geneticist and learned that he is a Q1.21 microdeletion. We are going to do
testing on ourselves to see who the carrier is, but as far as Rylan, the only
things we can tell it has affected is his developmental delay, and weakened
muscle tone. So that was reassuring.
In September, our little man turned 1! It was such a
wonderful and surreal moment to watch this baby turn 1 and feel relieved that
we made it out of some scary situations by the grace of God. He is so sweet and
funny and cute, it blows me away! His little personality develops more and more
each day. He loves to play peek-a-boo, and throw things out of my crib/pack and
play. He loves Mickey Mouse Clubhouse, and gets excited every time the Hot Dog
song comes on. He LOVES the water and enjoys baths. He has so many variations
of giggles, it cracks me up every time. He is in love with our cat Bailey and
they play together well. He loves snuggles, and laying on a pillow next to you
and watching videos until his eyes are too heavy to watch. He gives the world’s
best hugs and blows cute little kisses, with tongue sticking out and all! He
gives some good attitude but a silly face can make it go away almost instantly.
He is very particular about things, like how is pacifier is placed in his
mouth, how is blanket it, or where you put his milk cup. He absolutely LOVES
Cheetos, but eats nearly every flavor of food you can think of. There are a
million more things I could say about my incredible son, but I will make this
short.
My best friend came out from Texas and got to meet Rylan,
which was one of the best moments! They bonded instantly and it made me wish we
lived closer.
We planned a little cabin getaway for my birthday about an
hour away and had a blast. The cabin came packed with stuff for all ages,
including a pack and play! We had tons of fun and even got to see a family of
deer a few feet away from us!
Christmas was much better for everyone, and he seemed to
really enjoy it which was fun. We met Santa, and he changed his mind on liking
him from last year. (picture below). He made his own cookie plate and enjoyed
looking at lights. We did a walk around Broadmoor lake and opened presents
which he gladly ripped apart. It was a wonderful holiday season!
We are starting off the new year full of hopes for this coming
year! There is so much to be thankful for and so much I try not to take for
granted! I hope this year is filled with lots of love, laughter and great
memories! And hopefully more time to update :)
