Just a quick update on the Brady Boy. We went to the pediatrician's office for his Synergist shot and monthly weight check. They were also checking his ears, which were all clear. Remember, last time we were there he had gained a pound in a month. This month I didn't know what to expect because he didn't eat too well for two weeks when he had the ear infection.
Well, what do you know! The Braid-man gained 9 ounces in the past month, which included two weeks of not eating! Not bad! It makes me wonder where he'll be next month. Yeah!
Wednesday, December 27, 2006
Tuesday, December 26, 2006
I'm dreaming of a White-but-it's-too-warm-at-50-degrees Christmas
It sure didn't feel like Christmas up here in New England - we were at 50 degrees, which pleased the kids as they trekked outside to toss a ball... but to me Christmas needs to be homey and snowy and comfy.
It started at Christmas Eve mass. The 4 p.m. mass had the Children's Choir which was adorable with their off-key solos and high pitch instruments (Brady did NOT like the flute - Tom had to take him out!). The room was bright and overflowing as usual, but our beloved priest, Father Dennis, is still in Iraq until next August. We had an interim priest assigned to us who is pleasant... but NOT Father Dennis. I spoke about the transition last August. And as I sat there during the homily listening to Father Bomba drone on about the lineage of Jesus Christ (wasn't the Gospel going back 28 generations enough?) I recalled to Tom how last year at this time Father Dennis was telling us about the Christmas presents he received - like the pornographic ladies calendar from his brother to the rows of brown socks to the bottle of wine from a well-meaning aquaintenance (he is an alcoholic). He made us laugh and feel warm to our toes.
THEN, after the homily from Boringville, the cloud of incense that was hovering over the congregation made its way to our side, which made me get up and leave to get a breath of fresh air. The incense was so strong and rampant that people were coughing and one alter server threw up in the bathroom. Ahh... what a great experience!
Christmas day was fun - Michael woke up not too early - around 8 - and we all gathered in the living room to open presents from Santa. Brady joined us soon after and was immediately placed in his Baby Einstein Exersaucer. He kept staring at himself in the little mirror, probably wondering who that kid was. We had a great day, going off to Tom's family's then to mine. There was a bit of clouds over us at Tom's family's as we were reminded of his mother who passed away six months ago. It was our first Christmas without her.
Meanwhile, the entire day was in the 50's, I think, which may be nice for Florida, but here in New England you want snow for Christmas. It was even a little overcast and sprinkled later on while I was putting presents in the car to bring home. Brady did well with little sleep and both boys and Tom and I cleaned up well wherever we went! :) Michael was especially excited to get his Scout knife after earning his Whittlin' Chip at a Cub Scout campout. However, he had it in his head he was going to carry it from now on in his pocket like his dad, which we quickly put an end to.
Tonight, I sit here amidst toys and clothes and music, realizing how lucky we are to have such caring friends and family. This has been such an up and down year - Brady getting worse, Brady getting better, Tom's mother dying - and through it all we have had such great support. So thank you to all of you - toilet scrubbers and all! As Michael would say (since seeing Scrooge, The Musical a few weeks ago this is all he's been saying):
Thank you very much!
Thank you very much!
That's the nicest thing you've ever done for me!
Thank you very much!
Thank you very much!
Thank you very very very much!
It started at Christmas Eve mass. The 4 p.m. mass had the Children's Choir which was adorable with their off-key solos and high pitch instruments (Brady did NOT like the flute - Tom had to take him out!). The room was bright and overflowing as usual, but our beloved priest, Father Dennis, is still in Iraq until next August. We had an interim priest assigned to us who is pleasant... but NOT Father Dennis. I spoke about the transition last August. And as I sat there during the homily listening to Father Bomba drone on about the lineage of Jesus Christ (wasn't the Gospel going back 28 generations enough?) I recalled to Tom how last year at this time Father Dennis was telling us about the Christmas presents he received - like the pornographic ladies calendar from his brother to the rows of brown socks to the bottle of wine from a well-meaning aquaintenance (he is an alcoholic). He made us laugh and feel warm to our toes.
THEN, after the homily from Boringville, the cloud of incense that was hovering over the congregation made its way to our side, which made me get up and leave to get a breath of fresh air. The incense was so strong and rampant that people were coughing and one alter server threw up in the bathroom. Ahh... what a great experience!
Christmas day was fun - Michael woke up not too early - around 8 - and we all gathered in the living room to open presents from Santa. Brady joined us soon after and was immediately placed in his Baby Einstein Exersaucer. He kept staring at himself in the little mirror, probably wondering who that kid was. We had a great day, going off to Tom's family's then to mine. There was a bit of clouds over us at Tom's family's as we were reminded of his mother who passed away six months ago. It was our first Christmas without her.
Meanwhile, the entire day was in the 50's, I think, which may be nice for Florida, but here in New England you want snow for Christmas. It was even a little overcast and sprinkled later on while I was putting presents in the car to bring home. Brady did well with little sleep and both boys and Tom and I cleaned up well wherever we went! :) Michael was especially excited to get his Scout knife after earning his Whittlin' Chip at a Cub Scout campout. However, he had it in his head he was going to carry it from now on in his pocket like his dad, which we quickly put an end to.
Tonight, I sit here amidst toys and clothes and music, realizing how lucky we are to have such caring friends and family. This has been such an up and down year - Brady getting worse, Brady getting better, Tom's mother dying - and through it all we have had such great support. So thank you to all of you - toilet scrubbers and all! As Michael would say (since seeing Scrooge, The Musical a few weeks ago this is all he's been saying):
Thank you very much!
Thank you very much!
That's the nicest thing you've ever done for me!
Thank you very much!
Thank you very much!
Thank you very very very much!
Monday, December 18, 2006
Vent!
SO... today I spoke to Harvard Pilgrim Insurance because they are telling me we only have $5,200 per member, per calendar year for Early Intervention therapies. We started last February with PT, added Speech, then this summer added OT. The money lasted from February until September, apparently. Umm... hello? A) It is December 18 and I am being told this? and (B) ARE YOU PEOPLE INSANE????
Hi - my son has William's Syndrome... he NEEDS his therapies. As my friend pointed out, it's not like Brady can't hold a pencil correctly and needs OT. He needs to learn to CRAWL! (and walk, and talk, and eat, and....) I was told my recourse is a letter sent to the Appeals division where they will (hopefully) allow us more funds. At this rate, when January starts and the balance is $0 again (because it is reset every calendar year ), we will go through the $5,200 by April. I have contacted Brady's pediatrician and geneticist and they will give me letters to go with mine. My geneticist has already (within three hours of my asking!) dropped a letter to me. I would like to think that this is a standard thing and I will get the funds no problem. Can I point out to Harvard Pilgrim that my eight-year-old son NEVER goes to the doctor? Can I direct any of his leftover monies towards Brady?
I haven't had any problems with insurance thus far (except for one $250 copayment for a hospital visit - ugh) and naively thought the problems I have heard from other people would escape us. Hopefully, they still will. With all the issues needing my attention, this should not have to be one of them.
Other than that annoyance, things have been pretty quiet over here. Brady has been doing really well, reaching out all the time now for his toys as well as sitting for a long period of time and chewing. I finally feel like we can start playing more. Before he would kind of just look at his toys, not really interested. He will reach out now and grab things, always wanting to shake, shake, shake them! He has a little fascination with tiny balls in rattle-like toys and Michael is forever complaining that Brady is making too much noise when he's trying to watch TV.
He has been sleeping more and more and I'm wondering if these six-to-nine-month clothes will fit him long, as it could be a growth spurt. Some of the clothes seem to be getting a little too short, but the waist for the pants in the nine-month clothes fall right off his body.
There's been a lot of talk on the boards about the delay in speech, and Brady is definitely on the quiet end as well. His geneticist said at his one-year-old visit in September that the one thing she was surprised about was his lack of vocals. They are few and far between, with no correlation to when it happens. WELL... there probably is one, but one we can't figure out! Unlike his mother, Brady only speaks when he's got something important to say - he doesn't babble for no reason. :)
I am excited to see how he does Christmas morning with some of the new toys we asked Santa to bring him - especially this drum that plays music when he hits it. I think he will understand how that works. In the meantime, we are making cookies, singing carols and enjoying the holiday season.
Hi - my son has William's Syndrome... he NEEDS his therapies. As my friend pointed out, it's not like Brady can't hold a pencil correctly and needs OT. He needs to learn to CRAWL! (and walk, and talk, and eat, and....) I was told my recourse is a letter sent to the Appeals division where they will (hopefully) allow us more funds. At this rate, when January starts and the balance is $0 again (because it is reset every calendar year ), we will go through the $5,200 by April. I have contacted Brady's pediatrician and geneticist and they will give me letters to go with mine. My geneticist has already (within three hours of my asking!) dropped a letter to me. I would like to think that this is a standard thing and I will get the funds no problem. Can I point out to Harvard Pilgrim that my eight-year-old son NEVER goes to the doctor? Can I direct any of his leftover monies towards Brady?
I haven't had any problems with insurance thus far (except for one $250 copayment for a hospital visit - ugh) and naively thought the problems I have heard from other people would escape us. Hopefully, they still will. With all the issues needing my attention, this should not have to be one of them.
Other than that annoyance, things have been pretty quiet over here. Brady has been doing really well, reaching out all the time now for his toys as well as sitting for a long period of time and chewing. I finally feel like we can start playing more. Before he would kind of just look at his toys, not really interested. He will reach out now and grab things, always wanting to shake, shake, shake them! He has a little fascination with tiny balls in rattle-like toys and Michael is forever complaining that Brady is making too much noise when he's trying to watch TV.
He has been sleeping more and more and I'm wondering if these six-to-nine-month clothes will fit him long, as it could be a growth spurt. Some of the clothes seem to be getting a little too short, but the waist for the pants in the nine-month clothes fall right off his body.
There's been a lot of talk on the boards about the delay in speech, and Brady is definitely on the quiet end as well. His geneticist said at his one-year-old visit in September that the one thing she was surprised about was his lack of vocals. They are few and far between, with no correlation to when it happens. WELL... there probably is one, but one we can't figure out! Unlike his mother, Brady only speaks when he's got something important to say - he doesn't babble for no reason. :)
I am excited to see how he does Christmas morning with some of the new toys we asked Santa to bring him - especially this drum that plays music when he hits it. I think he will understand how that works. In the meantime, we are making cookies, singing carols and enjoying the holiday season.
Tuesday, December 12, 2006
The Bench
At the grocery store near the exit sits a bench that was placed there a year or so ago. Husbands waiting for wives and older chidlren waiting for moms sit there impatiently, watching the endless stream of people walking out with their groceries. It sits between the cheap vending machines with rings and slime and superballs that Michael always begs me a quarter for. The free newspapers sit next to it also, and sometimes you will see an older gentleman thumb through one waiting for his significant other.
A plaque rests in the middle of the bench, written on it something to the effect of "In Memory of Doris Laquerre". I remember Doris. She was an elderly woman, in her 70's or so, who used to pack groceries. She was a tiny woman, and I always thought she should be sitting at a coffee shop drinking coffee and playing cards with three other elderly women rather than packing bags with pierced teenagers with green hair. Not that she seemed unhappy packing groceries - oh no. She was friendly, always quick with a smile, and never squished the bread or broke the eggs. Michael used to tell her he had an aunt named Doris and she always smiled at him.
I remember the first time I saw the bench and read the inscription. I was a little shocked, because until I read it, I didn't realize she was gone. I felt bad, like I should have known or something, but I was also touched that a bench was placed there in her honor. Either corporate people placed it or a collection was made to raise money for it. Either way, she obviously touched lives to warrant the spot. There's not 10 benches sitting there with inscriptions on them. Hers is the only one. That is a statement all alone.
It is this time of year that we often think of those who have passed. We wonder how they are doing, when they should be with us instead. Tom's mother's passing just passed the six month mark. This will be our first Christmas without Nana Rose. To lose a mother is so profound I can't begin to fathom it, and I instantly start to think of something else. My godmother's year anniversary just passed us also - coincidentally both were on December 7 (also, coincidentally, the day Brady smiled). Last year, we also lost my uncle, an old Italian bachelor who epitomized every stereotype you can think of. They are all missed dearly and it is during this season that I remember Christmases past, and their kindness and generosity. I know they are all looking down on us and keeping watch.
A plaque rests in the middle of the bench, written on it something to the effect of "In Memory of Doris Laquerre". I remember Doris. She was an elderly woman, in her 70's or so, who used to pack groceries. She was a tiny woman, and I always thought she should be sitting at a coffee shop drinking coffee and playing cards with three other elderly women rather than packing bags with pierced teenagers with green hair. Not that she seemed unhappy packing groceries - oh no. She was friendly, always quick with a smile, and never squished the bread or broke the eggs. Michael used to tell her he had an aunt named Doris and she always smiled at him.
I remember the first time I saw the bench and read the inscription. I was a little shocked, because until I read it, I didn't realize she was gone. I felt bad, like I should have known or something, but I was also touched that a bench was placed there in her honor. Either corporate people placed it or a collection was made to raise money for it. Either way, she obviously touched lives to warrant the spot. There's not 10 benches sitting there with inscriptions on them. Hers is the only one. That is a statement all alone.
It is this time of year that we often think of those who have passed. We wonder how they are doing, when they should be with us instead. Tom's mother's passing just passed the six month mark. This will be our first Christmas without Nana Rose. To lose a mother is so profound I can't begin to fathom it, and I instantly start to think of something else. My godmother's year anniversary just passed us also - coincidentally both were on December 7 (also, coincidentally, the day Brady smiled). Last year, we also lost my uncle, an old Italian bachelor who epitomized every stereotype you can think of. They are all missed dearly and it is during this season that I remember Christmases past, and their kindness and generosity. I know they are all looking down on us and keeping watch.
Friday, December 08, 2006
We were wrong - it was December 7!
I DO have a funny guy!
Last night, Michael had his homework on the sidetable in the dining room. He kept walking back and forth from the dining room table to the table that had his homework. The table that had his homework was behind Brady in his highchair. Michael would be talking and Brady would try to look up, over his seat, to see his big brother. Michael walked back and forth, with Brady's eyes set on him each time Michael was next to him. At one point, Michael stood next to Brady and Brady started talking to him..... then smiled!!
This was a purposeful smile, not some gas thing or chewing the inside of his mouth thing. This was witnessed by me, his father and his brother. Then... he did it again! By the time I raced back with the camera, he was all done. We kept encouraging him, "Brady! Brady!" No chance. He kept his eyes on Michael and looked at us like we were crazy. :)
So, needless to say, Angela was right - December 7. He hasn't done it again... but I finally feel it is not too far off where he'll be smiling all the time. And it will probably always be tied to Michael in some way, as that boy makes me smile too.
I think I will now put Brady's name on the William's Syndrome Foundation site with the notation that he didn't smile until 14 months so other mothers don't go crazy like me... although I have lived here (in crazyville) for a while and know my neighbors well. (haha) I remember feeling a little relieved when I read one baby didn't smile until he was 9 months.. of course, then that came and went and here we still were. Not anymore though! Yahoo! :)
Last night, Michael had his homework on the sidetable in the dining room. He kept walking back and forth from the dining room table to the table that had his homework. The table that had his homework was behind Brady in his highchair. Michael would be talking and Brady would try to look up, over his seat, to see his big brother. Michael walked back and forth, with Brady's eyes set on him each time Michael was next to him. At one point, Michael stood next to Brady and Brady started talking to him..... then smiled!!
This was a purposeful smile, not some gas thing or chewing the inside of his mouth thing. This was witnessed by me, his father and his brother. Then... he did it again! By the time I raced back with the camera, he was all done. We kept encouraging him, "Brady! Brady!" No chance. He kept his eyes on Michael and looked at us like we were crazy. :)
So, needless to say, Angela was right - December 7. He hasn't done it again... but I finally feel it is not too far off where he'll be smiling all the time. And it will probably always be tied to Michael in some way, as that boy makes me smile too.
I think I will now put Brady's name on the William's Syndrome Foundation site with the notation that he didn't smile until 14 months so other mothers don't go crazy like me... although I have lived here (in crazyville) for a while and know my neighbors well. (haha) I remember feeling a little relieved when I read one baby didn't smile until he was 9 months.. of course, then that came and went and here we still were. Not anymore though! Yahoo! :)
Wednesday, December 06, 2006
Today is NOT the day
Today is December 6.
December 6, 2006.
Today was supposed to be the day Brady smiled.
Grandma asked the geneticist in September if Brady would ever smile. "Absolutely!" she said, smiling, in fact. "I can guarantee it. I can't give you a date, like December 6, but he definitely will."
So, of course, Grandma and I decided that Brady would smile on December 6. He's been doing some side smiles, but mostly just playing with his mouth. His eyes light up and his face scrunches into some kind of happy-face when you tickle the top of his chest, but it's not a smile.
His face is very symmetrical when he yells at his PT when he's mad at her. So it seems he has the ability in some ways. His Speech Therapist said his low tone is accountable for it all... and it's still very low. He's getting better and better... always good reports from his therapists. Just... not....there....yet.
Even though I was hoping for a better outcome today, in general I am not bothered too much by Brady's delays. When my mother was potty-training my brother, the doctor told her, "Don't worry, by the time he goes to kindergarten he'll be trained." (sorry, Josh!) It's not the exact same with Brady - but it's pretty close. The docs and therapists say he will walk, talk, smile. Knowing that he will has eased my mind on when. I do have my moments though - especially on this smiling thing. And once in awhile I get annoyed with those passer-byers who comment on how little he is, or what he's not doing even though he's one. I did have one mother comment for many sentences on how little Brady is for a one-year-old. We were in the doctor's office. I friend of mine said I should have freaked out to the woman, "Oh my, REALLY?? Oh, no! Let me go get the doctor! Oh no!" I do have an evil grin on my face right now, but only because the woman went on and on and on...
But today, December 6, should have been a little different. He's 14 months and three weeks old. When Brady was newly born he used to smile those gas smiles in his sleep. Apparently, it is a good thing that he did that - it means he CAN smile, his Speech Therapist said. His chubby little cheeks are weighing him down :)
And, on top of all this, Brady has his first ear infection in one ear. He's a very healthy kid, minus the William's, hernias, poor weight gain, and heart problems (haha). He had his first fever in his life yesterday for about an hour. He loves that sweet medicine, gobbled it up. In fact... that's probably why he didn't smile - he has an ear infection :)
(This pic is one of MANY trying to take Christmas pictures. Looks like I have a funny guy ~)
December 6, 2006.
Today was supposed to be the day Brady smiled.
Grandma asked the geneticist in September if Brady would ever smile. "Absolutely!" she said, smiling, in fact. "I can guarantee it. I can't give you a date, like December 6, but he definitely will."
So, of course, Grandma and I decided that Brady would smile on December 6. He's been doing some side smiles, but mostly just playing with his mouth. His eyes light up and his face scrunches into some kind of happy-face when you tickle the top of his chest, but it's not a smile.
His face is very symmetrical when he yells at his PT when he's mad at her. So it seems he has the ability in some ways. His Speech Therapist said his low tone is accountable for it all... and it's still very low. He's getting better and better... always good reports from his therapists. Just... not....there....yet.
Even though I was hoping for a better outcome today, in general I am not bothered too much by Brady's delays. When my mother was potty-training my brother, the doctor told her, "Don't worry, by the time he goes to kindergarten he'll be trained." (sorry, Josh!) It's not the exact same with Brady - but it's pretty close. The docs and therapists say he will walk, talk, smile. Knowing that he will has eased my mind on when. I do have my moments though - especially on this smiling thing. And once in awhile I get annoyed with those passer-byers who comment on how little he is, or what he's not doing even though he's one. I did have one mother comment for many sentences on how little Brady is for a one-year-old. We were in the doctor's office. I friend of mine said I should have freaked out to the woman, "Oh my, REALLY?? Oh, no! Let me go get the doctor! Oh no!" I do have an evil grin on my face right now, but only because the woman went on and on and on...
But today, December 6, should have been a little different. He's 14 months and three weeks old. When Brady was newly born he used to smile those gas smiles in his sleep. Apparently, it is a good thing that he did that - it means he CAN smile, his Speech Therapist said. His chubby little cheeks are weighing him down :)
And, on top of all this, Brady has his first ear infection in one ear. He's a very healthy kid, minus the William's, hernias, poor weight gain, and heart problems (haha). He had his first fever in his life yesterday for about an hour. He loves that sweet medicine, gobbled it up. In fact... that's probably why he didn't smile - he has an ear infection :)
(This pic is one of MANY trying to take Christmas pictures. Looks like I have a funny guy ~)
Friday, December 01, 2006
Who would scrub your toilet?
A friend of mine is pregnant - a bit surprising to her. She has a 16-year-old, a 13-year-old and an eight-year-old. Needless to say, not a stitching of baby anything is left in her house. She put the word out that she is looking for anything and everything. Coincidentally, my sister just bought a new house and is getting rid of things from the old one. One of the possessions was a crib. I spoke to my sister and her husband one day and said if it was still available I would take the crib for Marlena.
My always-funny-to-himself brother-in-law wondered if she was a good enough friend to lend the crib to. He jokingly asked, "Is she the type of friend who would come over and scrub your toilet for you?" (Assuming if I am sick or in the hospital or something... not just because it is cleaning day.)
Without thinking, I answered, "Yes." Then I stopped and thought about it. In his own funny way, my brother-in-law opened my eyes a bit. Just where is that line that deems a good friend?
I have friends whom I tell everything to; I have friends who do everything for me and vice versa; I have friends whom I work with on committees and clubs; I have friends whom I haven't talked to in years but I know I can call up in an instant if need be. At different stages in your life you also have different needs from your friends - you have the going-out friends, the shopping friends, the crafty friends, the confiding friends... maybe a mix for a few. Heck, if anything this blog has taught me is that I don't even have to meet people to have their friendship - I consider my blog pals "friends" too.
But now, with this "new" definition of friendship - "someone who would scrub your toilet for you" - maybe we need to rethink a couple of those people. After all, life is pretty short. We should spend our time with those who matter the most.
I believe I have a good number of people whom I think would scrub my toilet. I think they are the same people with whom I have been able to rely on over the years, especially this past year with Brady. They are the same people whose toilets I would also scrub, if need be.
My always-funny-to-himself brother-in-law wondered if she was a good enough friend to lend the crib to. He jokingly asked, "Is she the type of friend who would come over and scrub your toilet for you?" (Assuming if I am sick or in the hospital or something... not just because it is cleaning day.)
Without thinking, I answered, "Yes." Then I stopped and thought about it. In his own funny way, my brother-in-law opened my eyes a bit. Just where is that line that deems a good friend?
I have friends whom I tell everything to; I have friends who do everything for me and vice versa; I have friends whom I work with on committees and clubs; I have friends whom I haven't talked to in years but I know I can call up in an instant if need be. At different stages in your life you also have different needs from your friends - you have the going-out friends, the shopping friends, the crafty friends, the confiding friends... maybe a mix for a few. Heck, if anything this blog has taught me is that I don't even have to meet people to have their friendship - I consider my blog pals "friends" too.
But now, with this "new" definition of friendship - "someone who would scrub your toilet for you" - maybe we need to rethink a couple of those people. After all, life is pretty short. We should spend our time with those who matter the most.
I believe I have a good number of people whom I think would scrub my toilet. I think they are the same people with whom I have been able to rely on over the years, especially this past year with Brady. They are the same people whose toilets I would also scrub, if need be.
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