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Posts by 2boyzmama

I need ideas for ways to increase immune function.  Connor, 4 years old now, has a diagnosis of Velocardiofacial Syndrome/DiGeorge Syndrome/22q Deletion (take your pick on names!)  He has a mild t-cell deficit, suspected b-cell dysfunction, nothing all that alarming on lab work.  However, natural illness history suggests that his immune deficiency is much worse, he is repeatedly sick from the same viruses and bacteria, and shows no immunities in titers.    For...
Thanks! So I talked to the boys about it last night. They have no concept of what a "wish" is.  The best Connor could come up with is to "go to a play place and ride my bike" the best Ian could come up with is to "go to Ryan's house"  (Ryan is a local friend who lives 2 miles away!)  LOL!  When I asked them if they know what Disney is, Ian had a vague idea, Connor had no idea (hey, that means my attempts at non-commercializing them is working out pretty well!  LOL!) ...
Hi MDC friends!!  It's been quite a while since I've posted or even visited at all!  I had several reasons for taking an MDC break, but there were lots of times that I found myself wishing "I wish I could post this!"  Anyway, here I am, hopefully I'll be around pretty regularly again.   SO...lots to talk about to catch you all up.  But there's an immediate joy I want to share with you all!  We got word today that Connor has been approved for a wish!!!!  We are so...
Well, we got a pulse ox and I've been checking him sporadically. At rest or during normal activity, he's always above 95. But after a long tickling match with his Papa, I tested again and he was 84. I made them stop and a few minutes later he was back to 94. A few minutes later, he was 98. So it appears that he does indeed de-sat, but not for long. 
My friend's 23 weeker is turning a year old on Christmas Day. I have been following her since her water broke spontaneously at 22 weeks 2 days and baby was born 8 days later at 23 weeks 3 days.  They detailed their experience thoroughly on CarePages, and in their most recent post, they said:  "I remember not really being able to find many stories that gave us hope for a 23 weeker. Hopefully our story will help a family or 90 through a tough time."    So I wanted to...
Congratulations on your new son!  It's always a shock when our babies aren't born the way we expect them to be, and it takes a lot of time to get over that.  Basically there's no "wrong" way to grieve what your family is experiencing right now.  Some moms admit to having trouble bonding with their special needs babies, some moms bond in different ways than they did with their "typical" children (in my case, I turned into a fierce mama bear, protecting him with everything...
Yep, I just check no.  Often it isn't even mentioned.  Once in a while a specialist might ask about a particular vaccine (like the example above, our Pulmonologist focusses on vaxes available for respiratory diseases, but he doesn't push it at all, I've actually gotten some really good information from him about vaccines, he has a PhD in Microbiology in addition to being an MD, and his knowledge of immunology in general is impressive)  The Dev Peds that we've seen have...
Yep, what cassie said!   My son has numerous "soft" defects, meaning things like his eyes being spaced further apart, upper lip being more smooth, lower jaw is small and recessed, ears are mis-shapen, etc.  In his case, it's part of a chromosomal syndrome with lots of accompanying medical issues.   A friend of mine locally had a baby two weeks ago born with an extra finger on his hand.  In his case it's just a random "dismorphysm" with no associated medical...
My grandparents adopted their great-niece when her parents were killed in a car accident when she was 2.  By age 5 it was obvious that something was different about her, and as she got older, the differences were much more apparent.  My grandparents chose to do nothing about it, she was placed in special ed classrooms and "graduated" high school through a special ed program.  She can not live independently, so my mom petitioned to become her guardian.  Once my mom took...
The boys and I were having a wrestling/tickling match tonight and I stopped because I noticed Connor's lips turning purple.  After a few minutes we started up again and they turned purple again.  I was kind of "testing it out" and noticed that they turn purple within a few seconds of him breathing hard or laughing hard (holding his breath for even just 5 seconds) but then go back to normal red almost immediately.   Would that overly concern you?     He has been...
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