Tuesday, May 14, 2013

Hope I Didn't Miss Anything!

Wow.  This is definitely the longest I've gone without updating.  We've had a few ups and downs since my last post, but nothing we couldn't handle.  I guess after the insane ups and downs of the NICU, nothing really quite compares.  The rest of this just seems like a cake walk!  I'll try to cover all areas of Ryan in this post.  I'd love to do a separate post on our March for Babies walk because I'm so thankful for all of the love and support you guys shared with us that day, and I have pictures I'd like to share.  Hopefully I can get that done later this week.  So, here's what's been going on with Ry.

The last post was about his abscess, and I'm pleased to tell you the the antibiotics did the trick!  There's not even a lump there anymore, so that was fantastic news.  Now we just have to keep praying that it doesn't happen again because once a flare-up like that occurs, it makes a "path" in that area that is easy for bacteria to creep back down into and cause another infection.  So let's pray that as he continues to grow in strength and size, his little bum muscles will fill in that area and heal it completely.

In other news, this past weekend was especially tricky because Dani came down with a nasty fever and bumpy/swollen sore throat on Friday.  We had to miss her Mother's Day tea party at school (but her awesome teachers are going to set up all up for us again tomorrow so we and another family who had to miss can attend!!  Love them!).  We also had to miss the Taylor's Wish 5K we signed up for on Saturday morning to support the Pulmonary Hypertension Association.  I was pretty bummed to miss it, but we will definitely sign up again next year.  We were really thankful that she seemed to get better just in time for Mother's Day, and our masks and separation of duties (I was handling germy Dani while Dave was handling lighter-weight Ryan so that we wouldn't cross-contaminate and he wouldn't have to lift the heavier child) seemed to have done the trick to keep Ryan from getting sick, too.  Unfortunately, yesterday while we were at work, he started to get feverish and definitely had a sore throat because he would gag and throw up just from trying to drink a few drops of water.  We made the necessary calls, gave fever meds, stopped oral feeds, etc and praise GOD he is doing much better today after only 24 hours.  His sats dropped a little while he was feeling his worst.  Just enough to make us turn his oxygen up to one liter, but not enough for the doctors to make us bring him in.  So thankful our little fighter is getting stronger every day.  You know your views are skewed when you're actually slightly relieved to see your kid get "regular" sick and feel better after only a day without a trip to the hospital.  I'm not sure if that makes sense, but I know what I mean, and I'm sure other preemie moms get it, too. ;)

So besides those current events, here's an overall snapshot of how Ryan's doing:

Lungs/Heart:  His sats have been great lately, and for the past month or so we've been keeping him on .5 liter other than when he was acting sick the past few days.  We haven't had a big appointment with pulmonary or cardiology since end of March/early April, and his next appointment isn't until the pulmonary hypertension clinic at the end of June.  So last week I called pulmonary and talked to Dr. Y who knows him really well, just to see if we should set something up sooner to make sure he's on all the right meds, etc.  I was starting to feel uncomfortable with waiting a whole 3 months between appointments.  Plus, some of his symptoms/behaviors are changing.  For example, he used to wake up in the mornings really mucous-y and cough-y.  Now he doesn't.  He has a dry cough that comes and goes throughout the day randomly, and he wheezes more than he used to.  So, I set an appointment for later this month, just to make sure we're doing everything right.

Eyes/Ears:  Eyes are still the same.  Still wearing the contacts every day, and the new ones she ordered us fit MUCH better.  He still manages to rub his eyes and get them to pop out every once in a while, but not nearly as much as before, which is a relief.  We had an appointment with Dr. Sami a few weeks ago, and he didn't have a whole lot to say.  He does follow objects with his eyes, but the biggest concern right now is that he doesn't really look at people's faces.  We're working on it, and we're really lucky to have Julie from the Braille Institute coming every other week to work on visual stimulation. 

Ryan's hearing (or lack thereof) has been my latest hurdle to overcome.  I've been reading up a lot of deafness and deaf culture (huge thanks to Kari F. for all the great reading material!), researching about American Sign Language (ASL), cochlear implants, etc. and this is something that is really causing me some anxiety.  It's strange because I don't think it has really sunk in how real and permanent this is.  I think because we spent 7 months in the NICU worrying about all the other aspects of his health, and when this diagnosis came it was such an afterthought.  A shock for sure, but just not the main concern.  Now that his overall health is stabilizing and improving, the hearing loss is becoming more and more real, and more and more concerning.  The biggest concern for me is his inability to communicate.  I really want him to have every possible resource available to him to get him to be able to express himself in whatever way possible.  So, Dave and I have started to learn ASL (through a website I found on pinterest of all places), and we are slowly starting to introduce some of the signs to Ryan.  The problem, of course, is that we don't know how much of them he can actually see.  So, I've been doing some more digging to find out what resources are available to him for his hearing loss, as well as to us for learning sign language.  The family coordinators at the Regional Center sent me a large packet of information.  Unfortunately, most of the free services we did not qualify for.  But, while I was speaking to one of the employees at one of the places they referred me to, I was able to get our local school district's phone number because they have someone who works with deaf children, specifically young children aged 0-3.  I was so excited when I actually got to speak to the head of that department in our district as she told me all about this amazing teacher and how she would come to our house and work with us on learning ASL.  She also has connections with so many other families in our area with deaf children and they get together for picnics and other family events.  So, the ball is rolling on that and hopefully I'll hear back this week on when we can get started.  But wait, there's more!  One of the family coordinators from the Regional Center who actually first took in our case when Ryan was first discharged called me today.  She knew about Ryan's case and had just attended a workshop with a speaker who was talking about his program working with deaf/blind children, so she called him today and then gave me his info so I could call and see if he could help Ryan out.  He is the program coordinator and lives up in San Francisco, but we spent some time on the phone this afternoon and he is going to have one or two of the other 5 members of this program come out and meet with us to work on ways to help Ryan understand what is going on in the world around him.  I will go into more detail on this program after I meet with them.  The only downside is that this is a program funded by a federal grant, and the grant money is only guaranteed through Sept. 30th.  So he told me up front that they are fully functioning until then, but they can promise anything after that date since things aren't really looking good for them to continue to receive this funding.

Still regarding his hearing, I called the ENT back to reschedule his MRI last week.  Our plan had been to wait until after his echo in June because his cardiologist wanted to see if his PPHN would improve, but she did say that if we felt it was important to do it sooner that she would clear us as long as he was sedated by a cardiac anesthesiologist.  So, I made the call to get that set up because I think his hearing/language development is at a critical stage and I don't want to put it off any longer if we don't have to, especially since his lung health seems to be doing better these days.  So the MRI is set for May 30th at 1:30.  Lots of prayers for the best news possible for whatever they need to see in there would be much appreciated! 

GI:  Ryan's reflux has been SO much better ever since we stopped the Eryped.  He hardly ever throws up anymore unless he's eating solids and gets his gag reflex triggered.  He's been really working at eating more and more solids each day, and he's trying a wide variety of flavors and textures.  His therapists are all amazed each week about how much he seems to improve with that.  He definitely has his daddy's appetite!

Physical Therapy:  We're still working on trying to get Ryan NOT to arch his back so much.  You have never seen a kid arch his back as much as our boy.  We really like our therapist, and she works with him twice a week, so it's nice to see him getting more and more comfortable with her and getting his exercise in without any complaint!  He's rolling and scooting like crazy and loves to push his butt up in the air while he's lying on his back and get into the bridge position (just one more way for him to arch!).  He's grabbing his feet and pulling them to his chest more and more.  Not the biggest fan of tummy time still, but he doesn't fuss, he just flips himself right back onto his back in protest. 

Well, I think I covered everything just in time for my bedtime.  If I missed anything, please feel free to leave a comment and ask me (or send me a message or whatever).  I really don't mind talking about any of this, it's just been getting harder for me time-wise to get on here and update.  But then I feel like I forget half of what I wanted to share!  Thank you all for the constant love and support, especially all the sweet texts/messages you guys sent me on Mother's Day.  Best Mother's Day yet having both my kids at home with me!

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