Saturday, November 3, 2012

Latest happenings.

I know it's been a while since I've updated on Ryan, so I'll try to summarize what's been going on!  I'll actually have to refer back to my last post on the carepage to see where I left off.  OK, I'm back.  I think I'll sort this post into the same categories I have as tabs on my Ryan Binder. :)


We met with his GI doctor, Dr. Ho, on Oct. 30th.  He was pleased with the g-tube site and thought it was healing nicely.  We talked about his reflux, diet, and overall gassiness, and he gave us some suggestions.  We're still working out a feeding schedule that works for us.  We need to find a good balance between Ryan getting enough calories each day to continue with his good weight gain without causing him to get so full he gets bloated and refluxy (not an actual medical term, in case you were wondering).  He felt that we should cut out the continuous overnight feeds because that seems to be when he gets the most uncomfortable (the poor guy really wants to be a good sleeper, but he grunts from 4-6am pretty much every morning.  He's actually sleeping as he does it, but mommy and daddy sure aren't!).  So we had to gradually get him up to 7 daytime feeds and allow him to just sleep through the night.  Yesterday was the first day we got all the volume in during the day, and after his last feed at 6pm he passed out and didn't wake up until 1:30.  I decided rather than using the feeding pump at nigh I'd just let him nurse if he woke up hungry, and that worked fine.  He went back to sleep and then woke up and nursed again at 3:30, then slept through around 7am.  And guess what...he DIDN'T GRUNT!  I will wake up twice to nurse any day over having to listen to the poor guy grunt for 2 hours every morning in discomfort.  So, we'll keep this up and see how it goes.  We also took out the neosure powder because it was stopping him up.  Since we took it out, his poops have become a lot more regular (you're welcome).


We were blessed to be one of the first patients to get the synagis shot for RSV at CHOC Clinic yesterday.  After yet another extremely frustrating insurance ordeal (mistake was made on CHOC's end this time, not Blue Cross'), he got the shot and he did NOT appreciate it as much as I did.  I'm relieved he'll have some protection from RSV, even though it's still really important that he not be out in crowds, and he not be around people with symptoms.  It actually turned out to be a nice visit because I had to go pick up some frozen milk that got left behind in the NICU, so we got to go visit Ryan's old home away from home.  His primary nurse, Julie, was there along with the NP, Tiffany, who gave us her cell number because she also works at CHLA NICU and knew we would be up there again for eye surgery.  She said she would come over to the PICU for a visit. :)  One of his neonatologists, Dr. Cleary, came over to see how he was doing, too.  They all commented on how chunky he is and how chubby his cheeks are. :)  Later that day, Dr Y., his pulmonologist, called to let us know his blood work results came back.  She was about to STOP 2 of his meds!!  So we are down to around 7 meds now.  Slowly but surely we'll just keep shedding those bad boys!


Still no update on this other than we have an appointment set for Thursday afternoon to head up to CHLA to consult with both Dr. Reiser and Dr. Lee.  Please keep Ryan in your thoughts and prayers that this appointment comes with good news.  I really feel like he's trying to search out his vision with his left eye, but with the cloudiness in his right eye he just can't get his eyes to focus on anything.  He definitely loves to try to look around, though.  As for his hearing, we have our 2nd hearing test on 11/29.  I'm very curious to see what comes up at this exam.  Right now, I'm 75% sure he can't hear.  It's hard to say if it's actual hearing loss, or if he's just developmentally not ready to respond to sounds.  I just don't know.  But we'll be praying hard that as he continues to grow, these senses will grow with him and the doctors will be able to help him with anything that may be lacking.  No matter what, this boy will be loved.  That part is just a given.  As we were going to bed yesterday, Dave said in his ever-tactful way, "So what if he's deaf or blind.  He'll be the most badass blind/deaf kid there ever was and he'll have a happy life."  Brought a tear of joy to this mama's eye. :)

Other than all that, he's been doing fantastically.  We take him for walks and he even slept in his stroller in his Captain Hook costume as we watched Dani and her buddy, Nathan, trick or treat on Halloween.  He's been giving out big, gummy smiles more than ever lately.  Today we had an impromptu outing to the farmer's market along with an extended visit to my parents house because we needed to have our house exterminated (anyone else loathing this horrible flea season??), and he was such a trooper!  I'm sorry for trying to cram so much information in one post.  Now that this blog is set up, it should be easier for me to post more often, and I can include more about his everyday milestones rather than just all his medical stuff.  I can't wait for the day when the everyday stuff is more normal than the health issues.  Strangely enough, it's only been about 2 weeks, but I'm already starting to notice a shift in the right direction.  Thank you for the continued love and support.

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1 comment:

Christy said...

Hey Jen, glad you are getting settled in and everything is going so well!