The biggest update in our lives is that
Rylan can finally have food orally!! YAY!!! He had a swallow study on May 30th
at Children’s, and he did amazingly well! They started him off with formula in
a bottle, and while it threw him through a loop to have liquid coming out of
something that resembled his binky, after a few tries, he drank. He had 6
swallows with no aspiration! Next up was puree’s. He had sweet potatoes, which
is the first food he ever had in his life, and wasn’t too thrilled. He was so
confused to have something coming towards his face and into his mouth. They had
to sweeten it up with kool-aid, but they were finally able to get 3 bites in,
and with those bites, he swallowed all 3 successfully with no aspiration! He
did have a few episodes of passive swallowing, where he didn’t actually
swallow, gravity took over and made its way to the right place. We were cleared
to work with his OT to start feeding therapy and introduce puree’s to him. They
told us that it would probably be a few months before he would fully eat as
babies who have not been fed orally have a learning curve. This kid has blown
that out of the water! He did so well with his OT, that after a week, we were
allowed to start feeding him at home. It has been over a month and this kid is
a champ! He has done so well, we had to back off his feeds a little so we were
not over feeding him. To date, he has had and like the following; sweet
potatoes, apples, bananas, butternut squash, pumpkin, pears, green beans, spinach,
zucchini, peas, apple cinnamon granola, and blueberries. This chunky monkey
likes to eat! Not only that, but he is also drinking formula by mouth with
either his honey bear (sippy cup) or a real cup. We are beyond proud of him and
how far he has come!
The only little set back he has had was the
unfortunate fall he had while on the bed that resulted in a break in his femur.
D was watching the little nugget who has learned to roll himself all over, and
he took his eyes off of him for just a moment and he rolled himself right off
the bed. He hit our bed frame just right and broke his femur. We spent several
hours at the hospital and they put a splint on him and referred us to ortho,
but not before tell us of the possibilities of casts that were horrifying. I
was a bucket of nerves as I sat in that ortho room waiting to hear the outcome.
After reviewing scans, they said he is doing so well that they only need to do
the splint for 4 weeks. We go back after that to follow up with more scans to
see if he is doing well. If it all goes well, we do his surgery for his boy
parts on the following day.
Our family had the absolutely best time in
Disney in May, it was better than I could have hoped for. The kids did so well,
I was so proud of them for their patience and behavior. Rylan did amazing and A
had a blast! We learned a few tips before we left that helped so much, so I
thought I would share them here to pass them along, if they apply to you.
First, ride switch….the coolest thing there! When you have 1 kiddo and a baby,
it is really hard to ride some of the older rides without someone missing out. Ride
switch took care of that! You scan your ticket when you and kid get on the
ride. After the ride, the other parent gets to skip the line with the kid and
ride again. No one misses out and the kiddo gets to ride awesome rides twice…win/win!
Next, stroller/wheelchair access. Because of Rylan’s tube feedings, we use his
stroller as a wheelchair. Our first stop in Disney was to the town hall where
we got a little red tag that allowed us to bring his stroller around as a
wheelchair where most stroller access was denied. Not only that, but we got to
use the mobility access for rides and that cut our waiting time in half.
Another win! The biggest tip I would offer….splurge on Max Pass. It allowed us
to book and schedule rides so we didn’t do a ton of waiting and we got to do
nearly every ride in Disney. Well worth the money.
We have been blessed by so many things this
month, I am beyond grateful. But I will also say, this has been the hardest
time of my life. On June 9th, my beautiful and wonderful Grandma
passed away. I hadn’t dealt with death much in my life. My stepdad passed when
I was 12, and other than a few family friends, I haven’t really had to face
death like this. She has been hit with a lot of health problems in the last 10
years of her life, and a stroke she suffered in April was something that she
just couldn’t recover from. She fought so long and so hard, but it was finally
her time to be free of pain and suffering and become a glorious angel. I miss
her every single day! I am most grateful that she got to meet Rylan. She loved
Rylan so much! She called him her baby and asked about him constantly. We were
lucky enough to see her a month before she passed, and video chat several times
after. I hold her close to my heart and will always make sure that Rylan knows
about her and knows the love she had for him.
I will end this update as I have written
far more than I planned. Can’t wait to see what is in store for us in the
future, and share the many wonderful milestones our little man will have!
