Ryan Update

Ryan and Aaron left for Philadelphia on Monday morning for a few appointments.  He had his MRI scheduled- he gets those every six months.  He also had a checkup with the oncologist and with the ophthalmologist.

If you’ll remember, last time Ryan ran into some setbacks and complications.  One of the tumors had increased to the point where they didn’t want to do the laser treatments, and instead he had surgery where they sewed a radiation patch on the back of his eye for a few days.  Scary stuff!  Because of everything last time, this set of appointments was only 2 months from the last ones, instead of the usual three months.

But this time, we received nothing but good news!  The MRI was clear, and they didn’t even need to do any laser surgery on his eyes like every other time- the radiation worked!  So, he gets another three month reprieve from heading to Philly.

When Aaron and Ryan got home last night, the twins immediately ran to each other and embraced… so sweet!  They miss each other so much- Dylan doesn’t know what to do with himself without his playmate!


The Music Moves Him


So where was I?

Ryan at the hotel after the surgery to remove the radioactive disc.

Aaron took Ryan and Dylan to Philly for Ryan’s appointments last week- generally  he only takes Ryan, but he thought it would be fun to take them both this time.  And then of course, Ryan ran into some complications/setbacks.

My mom has been dying to visit, and now that her chemo and radiation is done, decided to help us out by picking up Dylan and bringing him down to NC.  Ryan was a handful after his surgery on Thursday.  They patched him with a lead patch because of the radioactive disc they put behind his eye.  Aaron said he barely ate, cried a lot, and was just miserable.

I’m glad my mom was here to keep me company while Ryan and Aaron were in Philly.  He had the disc taken out on Monday, and the two of them got home on Tuesday.  His eyes still look beat up, and his face is all chapped and raw from the adhesive from the patches, but he’s in MUCH better spirits.

He had to wear the patch for like 48 hours after the surgery, but it’s off now.  We do have to put this special cream in that eye everyday for three weeks- and he hates it.  But he’s such a trooper and is back to his happy smiling self already.

Aaron of course had duty today, his first day back so he’s gone all night.  Again, I’m so happy my mom is here.  We’ve been having so much fun visiting this past week.


Positive thoughts, please!

Ryan had his checkups in Philly this week.  He saw the oncologist Tuesday, and all was well.  But today at the ophthalmologist, he ran into some complications.  Some of the seeds from the tumor came back/grew bigger.  They were able to take care of the one eye with cryotherapy- where they sedate him and then laser them off.  But the other eye- that one’s seed is too big for that.

So tomorrow he goes in for surgery to attach a disc to his eye.  The disc is radioactive, and will deliver localized radiation to the seed and hopefully will get rid of it.  At this time, they are saying it will stay in his eye until Monday, and then he’ll have another surgery to remove it.

Right now, he is miserable.  Between the cryotherapy today and them preparing his eye for the radiation, he’s got one swollen shut and the other patched.

Will you all keep him in your thoughts please?  I really want to see him bounce back.  I miss this silly face.


More Please!

Yesterday, the speech therapist taught the boys how to sign ‘more’ and ‘please’ while she was here.  Ryan picked them right up and has been using them ever since, but Dylan is a bit more resistant.  And of course, he’s the one doing the most pointing, grunting and whining.

The past week or so, Ryan’s vocabulary has really increased- he still doesn’t string words together really, but he’s very happy to mimic us.  Neither would repeat after us before, so this is a good thing!  Sometimes he will do the sign for more while saying please.

I tried to get a video of them signing during lunch, but they wouldn’t perform on camera.  However, this afternoon they wanted some marshmallows and were willing to use their signs and their words- though more so Ryan than Dylan.

If you’ll disregard the undressed kids and mess in the background (and the creeper big sister at the end on the right side, I’ll share a video with you!

Now I have to go look up some more signs to teach them! Won’t it be cool if they can pick up a couple before they see the speech therapist again?