Back in Touch

Hi everyone,

This blog is my attempt to keep in touch w/ our friends, as I have not done very well at it (with good reason) for the last few months. As some of you know this has been a very eventful few months with Caleb. He is doing fine but has been in the hospital three times now (plus one out-patient test) and has many many Dr. Appts each week (which will start to slow down soon). He is expected to outgrow / overcome everything....It's just been a busy few months and likely will be a busy next couple of months so... this is my attempt to keep somewhat in touch with all of you and let you know what is going on with Caleb b/c I can't keep straight who I tell what.

To give you a brief abbreviated version (which is also pretty long)-- after three hospital stays, switching pediatricians and having three specialist (the new pediatrician and the three specialist are wonderful!) we have found out that he has malacias (or spots that flop shut) at 4 different spots in his throat / airway this means that for the first 2 months of his life each time he took a breath and was flat on his back, the way babies are supposed to sleep, he had to fight his own airway. He also has severe reflux which, combined with the malacias contribute to him having apnea spells, which he also handles very well. He has a apnea or hypnona something like 7-9 times an hour of REM sleep but is able to maintain his oxygen levels so.... he is good. On top of it all, he likely has a mild brain injury from delivery, that's a whole other story, that I am choosing to no longer waste energy on as it won't help Caleb....needless to say if I were in an accident at the doorstep of the hospital I delivered at and seconds mattered I would not step a foot in that door; the staff (read nurses, following protocol when complications happen, being prepared for emergencies and charting what happened accurately) were that bad. Anyways, that is what is likely causing the 4th malacia and according to doctors low tone (nick and I can't really see the low tone but.. as it was described to us yesterday, we see it mildly in his arms / legs but it's also in his airway)..... Regardless, all doctors agree that he will outgrow / overcome everything ... It will just be a busy year or two.

He is doing GREAT, Caleb doesn't even know anything is wrong, and he makes friends w/ all the Dr's and nurses (although he does revert and hates the hospital); all the Dr's are amazed by him b/c somehow he is managing to grow / thrive even though he essentially fights for 1/2 the breaths he takes. We are proactively starting PT and OT next week b/c I don't want to (and my pediatrician is like me) wait until he misses a milestone, I'd rather never know if he is affected additionally by the brain injury or if he overcomes it on his own, we just want him to continue to meet all his milestones. He does have to be hooked up to a monitor when he sleeps and when he is awake he has to have constant supervision or hook him up; we decided that we don't want him to have to live life with monitors so..... Caleb is developing a very demanding personality b/c someone (mainly MOM) is always there to give him what he needs as soon as he needs it :).