Sunday, January 11, 2009

Weekly update as we try not to puke ;)


I'm currently completely immobilized, as I have a little chubster who is prone to puking lying spread eagle across my lap and I'm not moving until I have no choice. He was starving this morning and went through 3 jars of food before he finally gave up, and I'm fully anticipating a blow-out soon. So I sit, and I wait. I sure wish Shaniqua would relocate somewhere further away from my bladder!

We had a good week. Daxton's PT and early interventionist remain extremely happy with his progress. The PT is really looking forward to our visit with the neurologist on Tuesday... She feels that he'll have no choice but to be amazed by Dax's progress. I'm a little more skeptical; not at his progress but at the neurologist's potential to be pleased or optimistic. He seems to be a "worst-case scenario" type of doctor... But we'll see. I was wrong before... Once... :)

We also have visits with his cardiologist and his pulmonologist next week. Looking forward to getting another echo... My gut says it will look a little better. She will probably increase Dax's dose of his viagra and digoxin due to his increase in weight, and will hopefully change the viagra administration schedule from every 6 hours to every 8. How many of you have to set your alarms to wake up twice at night to go give your kid viagra? I didn't think so ;D

I doubt the pulmo will make any changes until we get further through the winter... And I'm perfectly okay with that! We're in no hurry to get him off his O, and Daxton still really likes it!

Dax has continued to spit up from time to time this week, and he has great aim for a kid with no peripheral vision, I must say. :) The pediatrician wants us to keep an eye on it but is not prescribing meds right now. I really liked her before, but now I like her even more. As much as I don't want him puking I really respect her views on the risks and benefits of medicating once you factor in side effects, until we know he really needs it. He doesn't appear to be aspirating... We're actually having to crank down his oxygen more frequently now.

Dax had another playdate with his girlfriend yesterday and I think they're both playing hard to get. They appeared to be activelyignoring each other the majority of the time. There was a competition once to see who could raise the biggest stink, and I say it ended in a draw. Kinsley can cry much, MUCH louder, but Dax's alarms last longer. So they both win.

Regarding Dax's cry... It's getting gradually louder over time, and he's learning to make more and more noise when he talks to us. We have an appointment with an ENT in 2 weeks to look at his vocal chords and see if they were damaged during his time on the ventilator. Hopefully if there is damage, it's something he can outgrow over time without requiring any surgery. I'm optimistic since he's making more noises, but I can also envision him being the toddler in the stroller that growls like a 70-year-old cigar smoker. Whatever happens, he'll be adorable :)

He's still sacked out and there's been no up-chucking, so I guess I can get up now. Might go change my shirt, as it's currently green bean and peach and applesauce flavored. Yum :)

Love you all, and thanks again for all your continued prayers and support. Please continue to pray for Dax, especially his lungs, and pray his appointments go well this week. Please pray for our little peanut as she continues to grow and develop. Please continue to pray for Kinsley, Rosemary, Landon, Matthew, and McKenzye to be healthy and continue to grow. Please pray for Baby Drayke as he will hopefully getting a trach and g-tube this week. Please also send up prayers for Payton this week, as she is doing amazingly well and the doctors are attempting to iron out a plan to get her home sooner. Please also add Babies Mary Farris, Ryan, Crystal, and Courtney, some other babies I've met over the past few months who are now home but have crossed over many, many obstacles to get there. And finally, please add my friend Laura and her peanut. Laura has had two very tiny NICU babies and is now 19 weeks pregnant with her third. She's attempting to avoid the NICU at all costs this time, and I'm sure she'd appreciate all the prayers you guys can send off in their behalf.

So that's all for now. Love you all!

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