Sorry for not updating as much lately, just been tired and busy with other responsibilities.
Summary of recent events:
Aiden is back home and looks great!
Eating more normal for his situation (1.5 - 2 ounces). Docs have no explanation why he slacked off on his feeds when he came home at Christmas. Another Aiden mystery!
Still not waking up hungry. He should be waking up on his own every 3-4 hrs to eat. Still having to wake him up and prompt him. When he wakes up on his own, he's Joe Cool - very content, calm, usually quiet. He's slept as long as 6hrs already.
(Tell you what, he's not a good alarm clock but will make a great fishin' & huntin' buddy. So quiet, it's like silent gas that sneaks up on ya!)
Pediatrician did a hearing test in his office yesterday. Normal results. Will have a 3rd test done @ Celebration hospital in coming weeks to be sure hearing is good.
Eye appointment on Jan. 4th. Eyes will get dilated. One of many follow-up appointments to be scheduled in Orlando. Some follow-ups will be in Tampa.
Cardiologist appt. on Jan 12th. 1st of at least 3 follow-ups in the next 3 months.
RSV vaccine on Jan 19th. Will get one of these shots each month thru April. $1000/each.
Developmental therapist appt on April 8th and 15th. Might be double-booked in error. Will have to research this.
Docs want him eating no less than 40 ml's every 3 hrs (a little more than an ounce). He was averaging about 30 ml's (1 oz) before his recent hospital stay but now seems to be averaging about 50 ml's or more. Guess his hungry switch finally decided to work.
If he has 3 feeds in a row under 40 ml's we'll have to call his pediatrician and/or take him back to the hospital. He won't be going back to Winter Park hospital though.
Still having bradycardia's and apnea alarms. Frequency seems slightly less. Hopefully they will continue to fade away. As I write this, he's had several. Figures!
Still on caffeine for stimulation. No telling how long he'll be on it. $500 for every 10 day supply. Must be good stuff. Thank goodness for insurance! Cigna is our friend right now. If only they could waive out-of-pocket expenses...then we could be best friends...or "Besties" as Mikayla would say.
Staying awake longer and more active and alert when he is awake.
Maggie (our Boxer) can't stand to hear him. Goes into "momma mode" and wants to be all over him. Would get in the cradle if we'd let her. Mom says she's like the nanny in the Disney "Peter Pan" movie. I guess the nanny was a dog. I'll take her word for it.
Dunkin (our Shit-Zhu) isn't sure of Aiden yet. Curious George at times and tries to climb into the cradle but also runs and hides when Aiden makes noise.
Yahtzee (our other Shit-Zhu) could care less. Just doesn't understand how Mom could spend more time caring for Aiden than for her.
Pics and video in separate post.
Still thinking and praying for our friend Mary who had surgery. Love ya girl!
Posted by: Dad
Glad to hear that Aiden is home! I know how crazy and hectic your lives are going to be...we've been doing all of those dr's appointments since September now when the girls came home! The bigger he gets the fewer and farther between some appointments will become hopefully! I hear ya about the medical expenses though and insurance!
ReplyDeleteFYI...look into Medicaid for Aiden. I'm applying right now for the girls because I just found out that due to being preemies they should qualify for medicaid as a supplemental insurance for medical expenses until age 2. This will SOOOO help out on that end if they do get approved because what insurance wont cover, the medicaid should! Wish I had known this sooner, seeing as we've already gone 3x for RSV shots (imagine that cost x2) and Lilah was on caffiene for 2 months and the oxygen and monitor also...ugh!
Hope that bit of info helps you! Enjoy all you can of Aiden now that he's home with you...make up for all that lost time! Let me know if there's anything I can do!