Ryan is doing remarkably well. He was transferred to the HKU last Friday evening after weaning down to 2 on supplemental oxygen. He just isn’t sick enough any more to warrant 24/7 care.
He had a slight fever over the weekend with it spiking yesterday around 104 degrees F. I was with him yesterday and he was absolutely miserable. Today, his fever is down to around 100 degrees F and he is a much happier baby. Cultures were sent off over the weekend and everything is coming back negative so we are unsure what the fevers are a result of. They could be from a viral infection (cultures all test for bacteria), weaning on his narcotics, or an unknown source. He is cutting a third tooth (yeah!), but the fevers are too high to be a result of teething.
Another big first happened on Friday and then again Tuesday. The speech therapist came by last Friday and introduced water and applesauce by mouth to Ryan. He was pleased to meet both of them. I was able to work with him Tuesday with the supervision of the speech therapist to again offer him several spoons of water and several spoons of applesauce. He had some delayed coughing with the water so we aren’t sure if it was a direct result of the water or something else. We will try again Wednesday with a ‘feed trial’ like Tuesday’s and then if he tolerates it, he will have a formal swallow study done. If he passes the swallow study, we can start working aggressively to get him to feed with a cup and spoon. I can’t tell you how awesome that would be!! I am so ready for his nose to have a break from his feeding tube and I’m sure he’s ready too.
Natalie took these photos of Ryan’s first mommy feed….
After a spoonful of water…
Trying applesauce….
Ryan never once was upset about having a foreign object in his mouth or a foreign substance; both amazing since he’s never had real food (other than nursing/bottles) since we were working with him around three months of age. (He did slurp up some Methadone Monday by syringe, but that is another story for another day)
After I took the spoon out, he kept sucking and working his tongue around looking for more food. Let’s just say he’s a foodie in the making.
The girls spent some time entertaining him while I held him. Here is Ainsley and he playing: (again, photo credit goes to Natalie)
(c) 2016 Leighann Marquiss
Comments (22)
Natalie should be a photographer one day, oh, that’s right, she already is. 🙂 Hallelujah once again!
I am so glad to hear about the progress Ryan is making. It was fun to see the pictures of you feeding him. I hope that continues to go well.
Loved to see the huge smile when his sissy was playing with him.
I am praying for you all.
Linda @ Truthful Tidbits
Umm…I think you have a future photographer there. Great pics for a 5 yr old.
Congrats on the potential “foodie” How exciting!! Will we recognize him without a feeding tube? lol
Praise the Lord!
Loved the pic of Ainsley playing with Ryan. You can see the love between Ryan and his sisters. Love it.
That’s awesome…he’s making such progress!
she took great shots and I love the last one of him laughing at his sister…what a blessing! So fun to see you feeding him and him liking it!!! He is adorable
Yay! Great news all around. (well, except for the fever but hopefully that’ll be better soon) And Natalie did a super job taking pictures! I hope and pray Ryan continues to get better and better and is able to come home soon. What an awesome Christmas present that would make!
So did you get to try snow cream or is it all gone? We’re still looking into the best/closest places with snow so we might end up heading that way before long! Hope you have a great day. 🙂
Awesome! Can’t wait to see him tube free! What exciting news!
Richelle
Love love love love a thousand times LOVE!!! He looks like a completelty different bab than 2 weeks ago! Absolutely awesome! Hope you have your wee man home with you soon so you can help him catch up on some developmental milestones. God is sooooo good!!!!!!
YAY! God is awesome! Loved the pictures always praying for you all! 🙂
I LOVE the last picture! What an awesome smile he has!
Miss Natalie is a natural with the camera. YEAH for Mr. Ryan and eating thats some wonderful news!!
What fun pictures and what an exciting milestone for Ryan!!!
It’s exciting to see Ryan’s progress, and oh, Natalie has the makings of a good photographer in knowing how to compose a shot.
That’s absolutely great news! Just an fyi– the swallow study wasn’t fun for us as Madeleine hated the barium that she had to swallow. While she passed the swallow study, she was reluctant to eat much for a few weeks… still, its great news that he is so interested in feeding.
If this were Facebook, I would “like” this post. Since it is your blog, I can just tell you, that I am a fan of this post!
wow! that’s big stuff! loved the pics natalie took 🙂
So sweet, yeah Ryan, can’t wait for more food to keep those little fat cheeks growing.
cool, cool, cool!!!!!!! Hope he is a foodie for years & years & years to come!!!
Wow, what great shots!!! Seriously! Get that girl a camera for Christmas! The one of Ryan smiling at the screen and Ainsley smiling at him is so precious! And baby Ryan looks so incredibly healthy and chubby, he is thriving!! Truly a miracle, and thank you for sharing your miracle with us.
*FKA anonymous
Yeah!!! Headed in the right direction!
Great photos, your little girl is a natural with the camera it seems! Happy to see Ryan is making progress and is trying to eat some too. That is wonderful. Continuing to pray for you all.
Melissa
Saskatoon, Canada
Ah, that picture of Ryan smiling just made me smile – really big too. What an adorable child.
I’m so glad he got to have some applesauce – Yummy! Give Ryan a hug for me. 🙂