Tuesday, September 17, 2013

Trying to Keep Up

I just got finished rocking Ryan to sleep, and I was feeling nostalgic thinking back to the days when he was still in the NICU and I would update his blog every single night.  While I do feel guilty for not keeping up with the blog as much as I did back then, I know it's for good reason.  Now that all four members of our family are home under one roof, there just isn't enough time in the day!!  I was inspired by a conversation with a friend tonight to update, though.  Even though I don't update frequently, I can still see through the blog stats that we get a lot of hits here each day.  My friend reminded me that people who are in a similar situation want to find hope and information, and most times they turn to the internet.  For moms with preemies with special needs, many of their searches lead them here.  Let's face it, Ryan has a lot of searchable tag words associated with him.  Preemie, pulmonary hypertension, chronic lung disease, hard of hearing/deaf, visually impaired, oxygen, gtube, blenderized diet, the list could go on.  So, as much as I feel like I don't have the time, I need to be better about updating because I know there are people out there who have kids with one or more of the same issues and just want to know how Ryan is doing.

Lungs/Heart:  Nothing new to report here.  He's still on 3/4 liter of oxygen 24/7.  He's still on nebulizer treatments twice a day, aldactazide diuretics to keep fluid out of his lungs, and sildenafil for his pulmonary hypertension.  We have a pulmonary hypertension clinic coming up next week where he will meet with his pulmonologist and cardiologist and have an echo to check the status of his PPHN.  His sats have been a bit better than usual lately, which is excellent timing as we turn that corner into flu season.  We are hoping and praying so hard that we can keep our home as germ free as possible this winter so he doesn't wind up back in the hospital.  This is quite a feat with a 3 year old in preschool and two elementary school teachers surrounded by kids all day.  We haven't had to go on full on lock down quite yet, so we've been getting out of the house as much as possible on the weekends while we still have the freedom to do so.

GI:  He is still throwing up occasionally.  Not quite daily, but probably 4-5 times a week.  It's totally random and we have no idea when it will happen, but he is still on the omeprazole for that and it seems to be helping more than the prevacid was.  The blenderized diet seems to help, too...at least with the weight gain part.  I think the thickness of his blends does help him keep more of it down, so sometimes when he throws up it's just a tiny amount.  The whole thing is so baffling to me.  We all have our theories...maybe we shouldn't give him blend that is made the day before.  Maybe we moved him too soon after his feed.  Maybe he needs to be vented more, maybe less?  Who knows.  It's so random.  My latest theory is that he is just finally learning how to burp, so when he burps or coughs it triggers his gag reflex and he throws up because he just doesn't realize he doesn't actually HAVE to throw up!  Hopefully he will grow out of it soon, which, on the bright side, he is gaining weight.  It's a slow process, but at least the weight curve is moving in the right direction compared to what it was doing when he was just on the formula.

Eyes/hearing:  His vision is still one of his biggest blessings.  He definitely sees things.  He wears his contact lenses every day, and we still with the occasional lens popping out and panic on all fours as we try to recover it without losing our sanity.  His hearing aids are not quite as successful.  We had our follow up appointment last week, and we basically told her we aren't noticing a lick of difference.  He had them set at a really high amplification, and he didn't react to sound any differently than he did before.  Meaning, he doesn't react to sound at all, period.  It's actually a blessing in disguise because if it seemed like he could hear something, it might make the choice more difficult to go ahead with the cochlear implants.  Now there's no question that this is the way he is destined to hear.  So, I need to call House Institute this week and see if they would consider forgoing the rest of the hearing aid trial since it's pretty evident they aren't doing anything so we can get the ball rolling even sooner on the cochlear implants.  We are still working on adding new signs to our vocabulary as often as possible.  Ryan hasn't seemed to pick up any of our signs yet, but he does love to hit his mouth with his fist, which I'm going to go ahead and say is him just signing "mom" in his rudimentary way :)

Development:  Ryan still gets 4 hours of therapy a week.  He is showing some slow improvement, but he is still very developmentally delayed.  He had his latest IFSP meeting in August, and in most areas he scored at the level of a 4 month old.  With him being 18 months actual, 15 months adjusted, you can see how that is a pretty significant delay.  But, we've set new goals for him based on that information, and he definitely seems to get stronger and stronger every day.

General:  Life has been pretty crazy since we started back up to school this month.  My mom still comes to take care of Dani and help the nurse with Ryan while I'm teaching, and the nurse still comes to help with Ryan 5 days a week, 8 hours a day.  We are so, so sad to be losing the amazing nurse we've had with us since April because she is moving out of state.  She is going to be very difficult to replace.  Other than that, we have been busy with school, Spray Pal, Dani's back to school night and many other activities, in addition to trying to keep up with all of Ryan's home exercises for his therapies, etc.  I'm surviving off less sleep than I ever imagined possible (says the girl who's eyes are half closed while typing who normally needs 8 hours of sleep to function properly).  Coffee has definitely become a staple around these parts.  Thank God for all the blessings (like coffee, for example) that make this crazy, but wonderful, life possible!  And thank you all for keeping Ryan and our family in your prayers.  He's come a long way but still has a long way to go, and I know all of our prayers are being answered daily as we watch Ryan grow!

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