Sunday, March 3, 2013

The Latest.

First of all, I just need to start by saying I'm in serious denial that Ryan's birthday is this month.  It really just can't have been a year since everything in our world changed so much.  We won't be doing anything big for his actual birthday with it being flu season still (plus, he can't eat cake yet, so really, what's the point of a big party without cake?!).  But, I'm sure we'll throw down for his adjusted birthday in, watch out!

Here's the latest on our little man:

Pulmonary:  He had an appointment on Friday to get what was supposed to be his last synagis shot to protect him from RSV.  Luckily, or unfortunately if you ask him, they are going to ask our insurance to cover one more shot since this has been such a brutal flu season and he's still at such a high risk for RSV.  So we'll have one more dose in a month.  Our little guy rarely cries, but man, this shot (actually, I should say shotS since he has to get 2 now, one in each thigh, because he's over a certain weight) really brings on the screams and tears.  It's such a necessary evil. 

I asked Dr. Pornchai about his morning coughing fits.  He sleeps fine all night but then wakes up in the morning and starts coughing like crazy.  It's been quite a few weeks now, and this is part of what got him admitted about 2 weeks ago when they couldn't figure out why his sats were low.  We've adjusted his reflux meds, in case it was reflux related, but it hasn't helped.  Dr. Pornchai wants us to add Singulair to his list of medicines.  I was so desperate to find him some relief from this cough, I agreed to try it, but (of course), when we called CVS to find out about picking it up that night, they didn't have the proper authorization from our insurance, and it would have to wait until Monday.  Thank God this wasn't a life threatening medication, right?  I can't tell you how many times we've had to deal with this nonsense...but I digress.  Since we were going to have to wait anyways, I decided to do a little research on Singulair, and I wasn't too thrilled about some of the side effects parents were seeing in their kids when they put them on this.  So now, instead of filling the prescription on Monday, I'll be calling pulmonary back to talk to one of the doctors who knows Ryan a little better to see if they agree that he should be on this.

In the meantime, we've been trying some more "natural" ways to help his cough in the morning.  We make little adjustments in his feeding/meds routine and see if it makes a difference.  Today has been the best morning yet, so we're hopeful that what we are doing is working and we won't need to add the med at all. 

GI:  Ryan's still doing ok on Similac Sensitive, and like I mentioned, we are tweaking his feeding schedule a little bit to see if it helps with the coughing in the morning and the throwing up throughout the day.  He gets 6 feeds a day of just over 5 ounces, and we space them out every three hours from when he wakes up until he goes to sleep.  Today, one of the changes we made is that we are increasing the rate of his feeding pump, so he's getting his feed a little bit faster.  We are hoping it will help with his reflux and gassiness, and if it works, it has the added benefit of allowing us to pull him out of his seat to play with him and get him some exercise since he won't be hooked up to his feed as long.  So, fingers crossed it works! 

He's also been experimenting with various purees.  So far he has tried: squash, sweet potatoes, bananas, blueberries, cherries, yogurt, apples and carrots.  His feeding therapists have been really impressed with his willingness to try new foods and even grab the spoon and play with it in his mouth.  He doesn't have much of an oral aversion, he still just has a really hard time figuring out what to do with the food once he gets it in his mouth.  A lot of times, if it's a little more than he can handle, he just holds his tongue frozen with the food sitting on it and looks at me like, "OK...what do you want me to do with this now, mom?!"  We're still working on it, but we are very encouraged by how much he seems to enjoy food and is willing to work with it without getting upset.

Physical Therapy:  Physically, Ryan is definitely getting stronger.  His stomach doesn't quite feel like a big ball of jelly anymore, he's actually getting a little bit more core strength there, which is great!  He loves to lay on his play mat and grab at the hanging toys.  Today he even scooted himself backwards on his back about a foot while we were watching him!  He rolls from side to side, but hasn't quite mastered getting himself all the way over yet.  He loves using his feet to kick at things.  Right now as I type, he's in his bouncy seat getting his feed and he's kicking away at a shiny pinwheel Julie from the Braille Institute brought for him.  I just took a picture to put on this post, and he yawned at me and fell asleep.  Good timing, buddy! 

Hearing and Eyes:  Ryan will be getting a CT scan Friday, March 8th.  We could use some extra prayers for him that day.  We are praying for some good news, that his hearing loss will be treatable with hearing aids or a cochlear implant.  We also pray that if they do end up sedating him, which it sounds like they are planning on, but I'm still waiting on confirmation, that things go smoothly and we don't have any issues like last time.  I will definitely make sure that they don't use propofol, but if there's any way to avoid sedation, we'll be looking into it.

Ryan has been enjoying having both contacts back in his eyes.  We're on a nice, long streak of them not popping out, thanks be to God!!  We are extra vigilant about checking to make sure they are still in his eyes anytime we move him so that if they do pop out, we know where to search.  I wish we could say that he's seeing better with them in, but oddly enough, it's hard to tell.  It's like some days he will see any toy we hold out in front of him for him to grab, and other days I can put my finger right in front of his eye and even touch right next to his eye and he won't even flinch or notice it's there.  Today has been a good day with him reaching for objects and noticing things, so we are continuing to pray for his eyes to work and heal and grow. 

And finally, another fun first...big sister Dani wore her first pigtails!  It only took her 2 years to start growing hair, and there's finally enough to pull it up!  She kept them in for about 3.7 seconds, but it was just long enough for me to snap some picture while she proudly admired herself in the mirror. :)

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