C'mon people.. I look ridiculous!
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Monday, January 16, 2012
Sleep Study
Brody with his probe ponytail
C'mon people.. I look ridiculous!
Posted using BlogPress from my iPhone
C'mon people.. I look ridiculous!
Posted using BlogPress from my iPhone
Wednesday, January 11, 2012
First Birthday... Kinda
The boys were due 1/11/11 so today we can finally celebrate their corrected age birthday! Eventhough we have shared the last 15 months with them on the outside- to me- they are big boy 1 year olds.
January has been a crazy month! We are on a Information seeking mission with Cameron and his sensory issues. He has had an upper GI, blood workup and we are waiting to schedule a scope in the OR- all of this to make sure that his reflux hasn't cause any more serious damage. Then we go to ENT to make sure there is nothing complicating his vestibular system that might make his nystagmus ( his eyes scanning) worse. Then we go to Ohio for testing that we hope he can stay still long enough to get what we need and to meet Dr Hertle- THE foremost authority in nystagmus research. Were hoping he will have some answers as to how this disorder complicates Camerons other systems and find ways to keep it at bay... And hopefully have surgery to improve the condition.
Brody is going to ENT Friday and that same night getting a sleep study- if that goes well he can come off the vent at night and begin to prepare to get his trach removed in the spring ( as long as we can keep him from getting sick before then!) He is kicking it with spoon feedings and finally holding his own bottle.
Happy 1st birthday babies... You are the Roughest toughest there are.
- Posted using BlogPress from my iPhone
January has been a crazy month! We are on a Information seeking mission with Cameron and his sensory issues. He has had an upper GI, blood workup and we are waiting to schedule a scope in the OR- all of this to make sure that his reflux hasn't cause any more serious damage. Then we go to ENT to make sure there is nothing complicating his vestibular system that might make his nystagmus ( his eyes scanning) worse. Then we go to Ohio for testing that we hope he can stay still long enough to get what we need and to meet Dr Hertle- THE foremost authority in nystagmus research. Were hoping he will have some answers as to how this disorder complicates Camerons other systems and find ways to keep it at bay... And hopefully have surgery to improve the condition.
Brody is going to ENT Friday and that same night getting a sleep study- if that goes well he can come off the vent at night and begin to prepare to get his trach removed in the spring ( as long as we can keep him from getting sick before then!) He is kicking it with spoon feedings and finally holding his own bottle.
Happy 1st birthday babies... You are the Roughest toughest there are.
- Posted using BlogPress from my iPhone
Friday, January 6, 2012
Friday, December 30, 2011
This time last year
We were in Michigan awaiting word if Cameron would be sighted or blind while Brody was in Abington unable to be extubated and having life threatening episodes... Well we've come quite a ways folks. I have had some really bad emotional days lately of frustration, depression and questioning but when I look at where we were a year ago it puts it all into perspective. Our preemie experience will not be one that seems to get better after the first year- surgeries, intense therapies and my answer seeking escapades will continue for quite some time. No matter how tired or beaten down I feel I look at my 20 pounders at less than one year corrected age and know I have to find it in me to fight harder and search further for the unanswered mysteries.... We've gotten them this far and they are fantastic but we still have a lot more work to do.
I look at these little faces every day and know that I have to work through my physical and emotional exhaustion and find the strength
-
Cam standing/taking first steps without holding on : )
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I look at these little faces every day and know that I have to work through my physical and emotional exhaustion and find the strength
-
Cam standing/taking first steps without holding on : )
Posted using BlogPress from my iPhone
Sunday, December 18, 2011
First word... NO
Happy updates:
Cam is crawling up the steps, standing on his own for 10 second intervals and has said a few words... First one-NO!! second word-BALL, while showing us his basketball. He goes in search of the toy we request in a hide and seek like play. He is finally acknowledging and interacting with Brody rather than just stealing his toys... Well he still steals his toys but Brody is starting to fight back.
Brody is getting more comfortable with transition moves and is tolerating different movements much better. He went from screaming and throwing his spoon at me when o presented the idea of baby food a few weeks ago to opening his mouth in anticipation one spoon after another until he finishes off jar after jar. An unimaginable accomplishment from a child we didn't know would ever eat. There is nothing Brody won't be able to do.
Other stuff:
Cams feedings have really been challenging. He is maintaining his weight but just hates to eat... I think he has outgrown his reflux meds so hoping some adjustments will make him more comfortable. We're thinking he also has some sensory integration issues going on as he is always on the move and wasn't liking to get 'dirty' with food so we are seeking extra therapy as well. Baby Bootcamp is in full affect for the winter!
The boys will be one year corrected on 1/11/11. Nothing about daily life is easy but looking at where we came from... They are just the coolest kids ever.
Jump, jump, jump
- Posted using BlogPress from my iPhone
Cam is crawling up the steps, standing on his own for 10 second intervals and has said a few words... First one-NO!! second word-BALL, while showing us his basketball. He goes in search of the toy we request in a hide and seek like play. He is finally acknowledging and interacting with Brody rather than just stealing his toys... Well he still steals his toys but Brody is starting to fight back.
Brody is getting more comfortable with transition moves and is tolerating different movements much better. He went from screaming and throwing his spoon at me when o presented the idea of baby food a few weeks ago to opening his mouth in anticipation one spoon after another until he finishes off jar after jar. An unimaginable accomplishment from a child we didn't know would ever eat. There is nothing Brody won't be able to do.
Other stuff:
Cams feedings have really been challenging. He is maintaining his weight but just hates to eat... I think he has outgrown his reflux meds so hoping some adjustments will make him more comfortable. We're thinking he also has some sensory integration issues going on as he is always on the move and wasn't liking to get 'dirty' with food so we are seeking extra therapy as well. Baby Bootcamp is in full affect for the winter!
The boys will be one year corrected on 1/11/11. Nothing about daily life is easy but looking at where we came from... They are just the coolest kids ever.
Jump, jump, jump
- Posted using BlogPress from my iPhone
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