Friday 12/9/11
Earlier this evening AJ was a little fussy...he was hungry...here is what Andrew thought about the whole ordeal......."Allen needs to stop crying...i tried poking him in the head, but he started crying again..that's what I was doing...he liked it but then started crying over and over again but then he didn't want me to do it....hey do ya hear that? He stopped crying! Should I poke him in the head again? I think it likes it now!"
Andrew's help is just beyond words! When he was telling me he was very serious and was gesturing towards AJ's crib with his hand...and the look on his face when he noticed that AJ stopped crying was pure elation...like HE, and his poking, had solved the problem!
Sunday, December 11, 2011
Friday, September 30, 2011
Some more info about Ptosis
Happy Friday...where did the week go?
Yes, the boys should have been asleep hours ago, but I have to pick and choose my battles. I was doing the dishes when Andrew came running out of his room..."mom you have to change me QUICK! my poops are melting!!" where does he come up with this stuff? So after he was nice and clean and dry he walked back into his room and said "AWWWW what STINKS?! Aidan did you toot? ohhhh no no no wait, i know, it was me, never mind..."
Aidan had a pretty good practice tonight, he made a tackle and was pretty darn proud of himself! Abby had cheer practice and the girls had to run with their hands by their sides...kinda weird.
We have a busy weekend ahead of us (but Daddy has the weekend off...YAHOOOO!)....and a busy week next week too...but aren't they all busy? Aidan has a game tomorrow (its supposed to rain....UGH) and Abby has to cheer for the C team on Sunday. We might try to squeak some time in Plymouth in but who knows. There is an open house at Norfolk Aggie on Sunday as well and we might try to go, even though High School is almost 4 years away. Then on Monday Andrew has a dentist appointment and Abbs has Cheer practice...Tuesday is CCD and Football practice, Wednesday is dentist appointments for Abby and Aidan and Girl Scouts...ohhhh i forgot that there is a den meeting for cub scouts monday night...geez, being one of the den leaders I should remember that huh? Lets see, where was I? oh yes, more cheer wed night then AJ is 9 months old on Thursday and he has his 9 month check up and football practice and then Friday I am going to be a mystery reader in Aidan's class and then football and cheer that night...and poof...there is my week!
Aidan had a pretty good practice tonight, he made a tackle and was pretty darn proud of himself! Abby had cheer practice and the girls had to run with their hands by their sides...kinda weird.
We have a busy weekend ahead of us (but Daddy has the weekend off...YAHOOOO!)....and a busy week next week too...but aren't they all busy? Aidan has a game tomorrow (its supposed to rain....UGH) and Abby has to cheer for the C team on Sunday. We might try to squeak some time in Plymouth in but who knows. There is an open house at Norfolk Aggie on Sunday as well and we might try to go, even though High School is almost 4 years away. Then on Monday Andrew has a dentist appointment and Abbs has Cheer practice...Tuesday is CCD and Football practice, Wednesday is dentist appointments for Abby and Aidan and Girl Scouts...ohhhh i forgot that there is a den meeting for cub scouts monday night...geez, being one of the den leaders I should remember that huh? Lets see, where was I? oh yes, more cheer wed night then AJ is 9 months old on Thursday and he has his 9 month check up and football practice and then Friday I am going to be a mystery reader in Aidan's class and then football and cheer that night...and poof...there is my week!
Thursday, September 29, 2011
Long day...
Well...its almost 11:19pm and I'm tired and hungry...nothing new there! On the nights that Allen works I usually don't go to bed until he gets home. The kiddos didn't have school today and do not have it tomorrow either because of Rosh Hashana (sorry if i spelled it wrong). I have a cold or allergies or something that made me feel lousy all day so when Allen got up I snuggled in Andrew's bed and fell fast asleep for a couple of hours...and felt SO much better when I got up. Aidan had football practice tonight at 5:30. I was secretly hoping that when I woke up from my nap that I would find out that it had poured and that practice was cancelled...instead when I awoke, the sun was shining! UGH...
Well, my secret wish was sorta answered because as soon as we stepped on to the practice field we felt raindrops. I set up the DVD player in the truck for Abbs and Andrew and stood in the off and on rain watching Aidan. Allen arrived to check on his boy and us (and I was about to make a bottle for AJ) and KABOOM....a few rumbles of thunder and big flashes of lightning...off the field the boys ran to the overhang at the school...but any idiot could see that the storm was not going to pass us by without some drama...flash flooding and LOTS of bright white flashes....the coaches told the kids to run to their parents because practice was over....YAY!
Other than that excitement, my day was pretty uneventful. Although a highlight was when Andrew told me that he has a "pray phone" and talks to Grammy on it in Heaven. He talks about her ALL the time....its wonderful and I love that he talks about her. He often mentions her when he talks about Gigi and Uncle Bog on the moon. Who knows, maybe he knows more than I do.
I spent a lot of time last night surfing the web (why do they call it surfing?) looking up Ptosis and information about the surgery and about the surgeon. I came across a blog (which i am now following) and emailed the mom who writes the blog. Her son had the same surgery that AJ is going to have when he was only 3 months old and then again at age 2. We emailed back and forth a bit...mostly with me asking questions and I have read through her blog twice already and have a bunch of questions for her. She has chronicled his life with Ptosis very well...it is wonderful to know that there are others "out there" who are going through what we are. I have also subscribed to a few message boards through yahoo groups and am waiting for approval to be added...that should be another good source of information.
Well, that's all for now....wow, 3 days in a row of blogging.....not too bad :)
Well, my secret wish was sorta answered because as soon as we stepped on to the practice field we felt raindrops. I set up the DVD player in the truck for Abbs and Andrew and stood in the off and on rain watching Aidan. Allen arrived to check on his boy and us (and I was about to make a bottle for AJ) and KABOOM....a few rumbles of thunder and big flashes of lightning...off the field the boys ran to the overhang at the school...but any idiot could see that the storm was not going to pass us by without some drama...flash flooding and LOTS of bright white flashes....the coaches told the kids to run to their parents because practice was over....YAY!
Other than that excitement, my day was pretty uneventful. Although a highlight was when Andrew told me that he has a "pray phone" and talks to Grammy on it in Heaven. He talks about her ALL the time....its wonderful and I love that he talks about her. He often mentions her when he talks about Gigi and Uncle Bog on the moon. Who knows, maybe he knows more than I do.
I spent a lot of time last night surfing the web (why do they call it surfing?) looking up Ptosis and information about the surgery and about the surgeon. I came across a blog (which i am now following) and emailed the mom who writes the blog. Her son had the same surgery that AJ is going to have when he was only 3 months old and then again at age 2. We emailed back and forth a bit...mostly with me asking questions and I have read through her blog twice already and have a bunch of questions for her. She has chronicled his life with Ptosis very well...it is wonderful to know that there are others "out there" who are going through what we are. I have also subscribed to a few message boards through yahoo groups and am waiting for approval to be added...that should be another good source of information.
Well, that's all for now....wow, 3 days in a row of blogging.....not too bad :)
Wednesday, September 28, 2011
The date has been set....Nov 1st
Baby Allen's eye appointment was this morning. We met with Dr. Aaron Fay after meeting first with his fellow, a woman who's name I cannot remember. She took some pictures of AJ, measured his eye lids a bit and not much more. I gave them the report from Dr. Laby...but it was pretty clear that they knew what needs to be done...surgery. Its called frontalis suspension...there is an interesting article here. "The advantage of silicone frontalis sling is that it requires small skin incisions and less surgical time. This technique can be performed in all eyes with ptosis and poor levator function, which necessitates frontalis sling." That is a bit of a comfort...small skin incision....ugh...i want to cry every time I think about all of this. Dr. Fay is a young guy...blonde hair in a pony tail...and seems to know his stuff. He did say that he is working on a new procedure to correct ptosis but its about 10 years away...at least I know he's working on it. I'm all over the place with this today I know. AJ was awesome at the appointment, full of smiles and giggles. One thing to note that I had read and did ask the doctor about is that AJ's eye will not close all the way for quite a while, perhaps months or years...this does not mean that it will be all the way open when he tried to sleep but it will not be closed all the way...I guess we will have to just wait and see. We will have to put ointment or salve on his eye when he goes to bed at night.
The surgery is scheduled for November 1 at 7:00AM and we have to be at Mass Eye and Ear at 5:30AM...i'm thinking we wont be sleeping too much the night before. Ok, should I get a second opinion? I talked with Allen about it. I trust Dr. Laby and he trusts Dr. Fay. I've been online for a bit this afternoon researching Dr. Fay and I like what I see. He has published articles in journals of Ophthalmic medicine. Bottom line is that the surgery needs to be done. If nothing is done it is almost guaranteed that AJ will become legally blind in his left eye and his spine will not develop correctly because of the head tilt. Is this THE worst thing EVER in the history of surgeries? No. Will it help our little guy? Yes. Does it seem like the worst thing ever in his little life right now? Yes...but he wont remember it and he'll be so much better off than if nothing was done. His follow up apointment is Friday November 11th.
I do have some questions for the doc that of course I didn't think of until the drive home...
will he need additional surgeries? if so, when? how many? how often? will he have a scar? when will his eye close all the way? ever? will the astigmatism correct itself? will the "misaligned" eye correct itself? will he need to patch the right eye? will he need glasses when this is all done? how long are the silicone rods good for? do they need to be replaced?
Some of the questions are for Dr. Fay and some are for Dr. Laby.
Well, that is it for now....i'm sure i'll be blogging more later, if not today then maybe tomorrow.
"Being a mother is learning about strengths you didn't know you had, and dealing with fears you didn't know existed." ~Linda Wooten
The surgery is scheduled for November 1 at 7:00AM and we have to be at Mass Eye and Ear at 5:30AM...i'm thinking we wont be sleeping too much the night before. Ok, should I get a second opinion? I talked with Allen about it. I trust Dr. Laby and he trusts Dr. Fay. I've been online for a bit this afternoon researching Dr. Fay and I like what I see. He has published articles in journals of Ophthalmic medicine. Bottom line is that the surgery needs to be done. If nothing is done it is almost guaranteed that AJ will become legally blind in his left eye and his spine will not develop correctly because of the head tilt. Is this THE worst thing EVER in the history of surgeries? No. Will it help our little guy? Yes. Does it seem like the worst thing ever in his little life right now? Yes...but he wont remember it and he'll be so much better off than if nothing was done. His follow up apointment is Friday November 11th.
I do have some questions for the doc that of course I didn't think of until the drive home...
will he need additional surgeries? if so, when? how many? how often? will he have a scar? when will his eye close all the way? ever? will the astigmatism correct itself? will the "misaligned" eye correct itself? will he need to patch the right eye? will he need glasses when this is all done? how long are the silicone rods good for? do they need to be replaced?
Some of the questions are for Dr. Fay and some are for Dr. Laby.
Well, that is it for now....i'm sure i'll be blogging more later, if not today then maybe tomorrow.
"Being a mother is learning about strengths you didn't know you had, and dealing with fears you didn't know existed." ~Linda Wooten
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