The calendar is never blank.
We just got booked in to the Boston Children's Hospital Williams clinic in mid-January. We go to the hospital daily for three days and see every specialist, along with OT, PT, developmental, consultants, you name it. I am pretty excited about it because I know we'll get some great feedback, but also some local help as well. I think they also have two families at a time so we'll hopefully meet up with another WS family. Brady's PT is interested in going with us one day too, which will be such a great addition. She'll get the first-hand knowledge.
This is not to say I'm not excited for our second Louisville trip also -- we're doing that at the beginning of January (Amy??). So basically, we'll be overloaded on information to start the new year, but I can't really help that right now. The Louisville trip includes a meeting with Dr. Morris, whom we didn't get to see in June. I enjoyed going last summer; I think I greatly benefited from that trip. I am interested to hear if Dr. Mervis sees any major changes in Brady.
I will probably need a little R&R come February. Las Vegas, anyone?
Thursday, October 04, 2007
Wednesday, October 03, 2007
I have a confession to make: having a special needs child has made me less tolerant over stupid problems. The issue lies in what I consider a "stupid problem". I have actually gained more patience in general ("Is it really that important for you to be so upset?") but I am finding there is very little out there that I consider a major problem to be unnerved about. I am not comparing our shortcomings to someone else's -- just putting everything into perspective has made me realize that some things are not as bad as they could be.
It is a problem, really. I am realizing I have less and less sympathy for people who's major problems look like they belong in high school ("Are you mad at me?"), or problems that are easily avoidable ("Ummm... maybe you shouldn't have started dating a married man.") or problems that are blown out of proportion ("Yeah... a hangnail is a very serious condition for you to call in to work.")
Am I becoming a bad friend? Sometimes I feign sympathy because I don't have the guts to tell someone I don't agree with their thought process. And sometimes I know that's really all friends need to do -- just be a sounding board for people so they can figure out their problems themselves. I am sure I have bored a friend or two with things they didn't think were so important. But I am wondering if I will ever go back to having that non-judgemental ear.
Sometimes the most important problem for you is a minor one: sometimes you just need the simplest of things go right because everything else sucks. For example, your computer breaking down isn't the worst thing in the world, but it can be that last little thing to drive you over the edge. ("Look at everything in my life -- can't AT LEAST my computer work?????") I hear that~ it happens. And God knows I've been there. I have to remind myself to keep in check.
Who knows -- maybe it isn't because of Brady that I feel this way. Maybe I would've felt this way anyway since I am (gulp) getting older and less tolerant. I do look forward to that glorious senior citizen age where you can tell everyone exactly what's on your mind and people just expect it. Maybe I'll become more understanding by then.
It is a problem, really. I am realizing I have less and less sympathy for people who's major problems look like they belong in high school ("Are you mad at me?"), or problems that are easily avoidable ("Ummm... maybe you shouldn't have started dating a married man.") or problems that are blown out of proportion ("Yeah... a hangnail is a very serious condition for you to call in to work.")
Am I becoming a bad friend? Sometimes I feign sympathy because I don't have the guts to tell someone I don't agree with their thought process. And sometimes I know that's really all friends need to do -- just be a sounding board for people so they can figure out their problems themselves. I am sure I have bored a friend or two with things they didn't think were so important. But I am wondering if I will ever go back to having that non-judgemental ear.
Sometimes the most important problem for you is a minor one: sometimes you just need the simplest of things go right because everything else sucks. For example, your computer breaking down isn't the worst thing in the world, but it can be that last little thing to drive you over the edge. ("Look at everything in my life -- can't AT LEAST my computer work?????") I hear that~ it happens. And God knows I've been there. I have to remind myself to keep in check.
Who knows -- maybe it isn't because of Brady that I feel this way. Maybe I would've felt this way anyway since I am (gulp) getting older and less tolerant. I do look forward to that glorious senior citizen age where you can tell everyone exactly what's on your mind and people just expect it. Maybe I'll become more understanding by then.
Tuesday, October 02, 2007
Monday, October 01, 2007
31 for 21
Today is the first day of Down Syndrome Awareness Month. I have been learning more about this syndrome as I now frequent Michelle's site (http://mdbeau.blogspot.com/) about her daughter Kayla. She has received a challenge to "31 for 21", upon which she put out for everyone else. This means to post every day in October (31 days) to raise awareness for Down syndrome, 21 referring to the 21st chromosome that people with Down syndrome have. You don't necessarily have to write about Down syndrome in each post, but to explain that is why you are kicking it off would be nice!
As I sit this first hour writing, I am smiling to myself at how much has changed in the past two years since Brady was born. Not regarding the Williams diagnosis, or just having another child in the house, but just the friendships that have been created and brought together because of our children. When Michael was just a toddler, I created friendships with women whom I am still close with to this day -- even though our children may not be close anymore, we still share a bond.
With Brady, my ties with people across the country through the internet are just as close. Why, just this day alone, at 1 p.m. in the afternoon, I have already mentioned Erik, Clare and Lisa (LOL). I speak of them and others as if they were just at my house yesterday. How can this be??? Well, Clare could have been :) but Avery is in Indiana, Erik in Oregon, Daven in New Mexico, Tatum in Maryland... and the list keeps growing.
I found Michelle's site through another blog and now I follow along Kayla's journey, as I do with all of the other WS mommies out there. It is helpful and refreshing to have the support and education from everyone... thank you all.
As I sit this first hour writing, I am smiling to myself at how much has changed in the past two years since Brady was born. Not regarding the Williams diagnosis, or just having another child in the house, but just the friendships that have been created and brought together because of our children. When Michael was just a toddler, I created friendships with women whom I am still close with to this day -- even though our children may not be close anymore, we still share a bond.
With Brady, my ties with people across the country through the internet are just as close. Why, just this day alone, at 1 p.m. in the afternoon, I have already mentioned Erik, Clare and Lisa (LOL). I speak of them and others as if they were just at my house yesterday. How can this be??? Well, Clare could have been :) but Avery is in Indiana, Erik in Oregon, Daven in New Mexico, Tatum in Maryland... and the list keeps growing.
I found Michelle's site through another blog and now I follow along Kayla's journey, as I do with all of the other WS mommies out there. It is helpful and refreshing to have the support and education from everyone... thank you all.
Tuesday, September 25, 2007
What's Your Name?
I copied this from another blog... what's your name???
1. YOUR ROCK STAR NAME: (first pet & current car), Linus Camry
2.YOUR GANGSTA NAME: (fave ice cream flavor, favorite cookie), Chocolate Chip Cookie Dough Chocolate Chip
3. YOUR “FLY Guy/Girl” NAME: (first initial of first name, first three letters of your last name), K-Farr
4. YOUR DETECTIVE NAME: (favorite color, favorite animal), Blue Panda
5. YOUR SOAP OPERA NAME: (middle name, city where you were born), Grace St. Louis
6. YOUR STAR WARS NAME: (the first 3 letters of your last name, first 2 letters of your first), Farke
7. SUPERHERO NAME: (”The” + 2nd favorite color, favorite drink), The Brown Malibu Pineapple
8. NASCAR NAME: (the first names of your grandfathers), Charles Charles
9. STRIPPER NAME: ( the name of your favorite perfume/cologne/scent, favorite candy), White Shoulder Hershey Almond
10.WITNESS PROTECTION NAME: (mother’s & father’s middle names ), Marie Michael
11. TV WEATHER ANCHOR NAME: (Your 5th grade teacher’s last name, a major city that starts with the same letter), Spitznagel St. Louis
12. SPY NAME: (your favorite season/holiday, flower). Autumn Carnation
13. CARTOON NAME: (favorite fruit, article of clothing you’re wearing right now + “ie” or “y”) Pear Aqua Shorts
14. HIPPY NAME: (What you ate for breakfast, your favorite tree), Mini wheat Dogwood
15. YOUR ROCKSTAR TOUR NAME: (”The” + Your fave hobby/craft, fave weather element + “Tour”), The Reading Breezy Tour
1. YOUR ROCK STAR NAME: (first pet & current car), Linus Camry
2.YOUR GANGSTA NAME: (fave ice cream flavor, favorite cookie), Chocolate Chip Cookie Dough Chocolate Chip
3. YOUR “FLY Guy/Girl” NAME: (first initial of first name, first three letters of your last name), K-Farr
4. YOUR DETECTIVE NAME: (favorite color, favorite animal), Blue Panda
5. YOUR SOAP OPERA NAME: (middle name, city where you were born), Grace St. Louis
6. YOUR STAR WARS NAME: (the first 3 letters of your last name, first 2 letters of your first), Farke
7. SUPERHERO NAME: (”The” + 2nd favorite color, favorite drink), The Brown Malibu Pineapple
8. NASCAR NAME: (the first names of your grandfathers), Charles Charles
9. STRIPPER NAME: ( the name of your favorite perfume/cologne/scent, favorite candy), White Shoulder Hershey Almond
10.WITNESS PROTECTION NAME: (mother’s & father’s middle names ), Marie Michael
11. TV WEATHER ANCHOR NAME: (Your 5th grade teacher’s last name, a major city that starts with the same letter), Spitznagel St. Louis
12. SPY NAME: (your favorite season/holiday, flower). Autumn Carnation
13. CARTOON NAME: (favorite fruit, article of clothing you’re wearing right now + “ie” or “y”) Pear Aqua Shorts
14. HIPPY NAME: (What you ate for breakfast, your favorite tree), Mini wheat Dogwood
15. YOUR ROCKSTAR TOUR NAME: (”The” + Your fave hobby/craft, fave weather element + “Tour”), The Reading Breezy Tour
Friday, September 21, 2007
Children's Hospital -Week #2
Okeedokee... Monday we went to Orthopedics. I love our orthopedist. He is WONDERFUL. However, we did end up waiting an hour to see him, which through off the rest of the day and the OT appointment at the hospital afterwards. My mother was with us and pretty upset we had to wait so long. She was threatening to make snide comments when the doc came... I had to restrain her. I like this doc! She ended up behaving herself. :)
Brady's PT gave me a list of things to go over with Ortho, notably his hands -- he tends to keep his thumbs in at rest. He does open his hands all the way, pick things up and use normally, but they definitely need stretching out. His left is worse than his right and sometimes prohibits him from putting food in his mouth. He recommended hard splints to wear to bed. We went to the OT at the hospital and they made one right there and then - how cool! Brady wore it with no complaining. We ran out of time to make the other one, so we have to go back now NEXT week (Week #3 for those keeping track) to make the second one. It only takes about half an hour. While we're there we'll get his blood and urine test for calcium.
The Orthopedist felt his radial ulnar synostosis was fine, not prohibitive to him in any way yet. His hamstrings were a little tight, but both he and Brady's PT feel Brady is going through a growth spurt right now which could account for that. His PT also feels Brady's ankles are weak. His knees are fine, very strong. The orthopedist prescribed UCGLs which I think are a hard plastic brace for his shoe to support his ankle. They are not covered by insurance and are $250 each. Apparently insurance doesn't cover anything below the ankle. What?!?!?!??!
No biggee - the doc wasn't pushing for them right now (Since he's not walking or attempting to - we're still working on the crawling) and the Brace shop people said if he prescribed SPOs they would be covered. SO I will look into all that. Plus I am finishing up an insurance plan that would cover some out-of-pocket medical expenses, so we might be okay anyway.
Which brings us to Thursday... when we went to the Ophthalmologist. Yes, Brady got in a bit of trouble for taking his glasses off! But the doc did say she doesn't feel the glasses are really helping his eyes turning in anyway. They both turn in at different times, which is good because it means he is using both eyes. His vision is actually fine. She did say she thinks he probably will need surgery to stop them from turning in for cosmetic reasons. Basically, he will feel better about himself, give him confidence, it will aid him in being more social if he isn't self conscious about his eyes. I understand and agree. It's nothing that will happen soon, and they adjusted his glasses and we got a strap so if the glasses do seem to help over these next three months, maybe we won't think about surgery.
On top of all this, I think he has allergies. I think they spiraled into a cold, which we all have now.
I will write more later- but since I chose to read all the blogs before I wrote has led me to a late night when I am EXHAUSTED!
Brady's PT gave me a list of things to go over with Ortho, notably his hands -- he tends to keep his thumbs in at rest. He does open his hands all the way, pick things up and use normally, but they definitely need stretching out. His left is worse than his right and sometimes prohibits him from putting food in his mouth. He recommended hard splints to wear to bed. We went to the OT at the hospital and they made one right there and then - how cool! Brady wore it with no complaining. We ran out of time to make the other one, so we have to go back now NEXT week (Week #3 for those keeping track) to make the second one. It only takes about half an hour. While we're there we'll get his blood and urine test for calcium.
The Orthopedist felt his radial ulnar synostosis was fine, not prohibitive to him in any way yet. His hamstrings were a little tight, but both he and Brady's PT feel Brady is going through a growth spurt right now which could account for that. His PT also feels Brady's ankles are weak. His knees are fine, very strong. The orthopedist prescribed UCGLs which I think are a hard plastic brace for his shoe to support his ankle. They are not covered by insurance and are $250 each. Apparently insurance doesn't cover anything below the ankle. What?!?!?!??!
No biggee - the doc wasn't pushing for them right now (Since he's not walking or attempting to - we're still working on the crawling) and the Brace shop people said if he prescribed SPOs they would be covered. SO I will look into all that. Plus I am finishing up an insurance plan that would cover some out-of-pocket medical expenses, so we might be okay anyway.
Which brings us to Thursday... when we went to the Ophthalmologist. Yes, Brady got in a bit of trouble for taking his glasses off! But the doc did say she doesn't feel the glasses are really helping his eyes turning in anyway. They both turn in at different times, which is good because it means he is using both eyes. His vision is actually fine. She did say she thinks he probably will need surgery to stop them from turning in for cosmetic reasons. Basically, he will feel better about himself, give him confidence, it will aid him in being more social if he isn't self conscious about his eyes. I understand and agree. It's nothing that will happen soon, and they adjusted his glasses and we got a strap so if the glasses do seem to help over these next three months, maybe we won't think about surgery.
On top of all this, I think he has allergies. I think they spiraled into a cold, which we all have now.
I will write more later- but since I chose to read all the blogs before I wrote has led me to a late night when I am EXHAUSTED!
Sunday, September 16, 2007
Busy, busy, busy
It's been a little insane over here (I am noticing how many times I start a post like that...). We started the new school year and with that all the other new things -- a new Sports season (soccer), a new Cub Scout year (Webelos 1), a new Programming year for me with the PTO (scheduling and finalizing programs for the school), a new CCD class, a new homework/play/bed schedule, etc.
And on top of that, we have all of Brady's annual visits coming up. Within two weeks, Brady and I (and Grandma) have made/will make five separate visits to Children's Hospital, plus his normal therapy appointments (which Teresa has graciously pointed out to me is seven hours a week), plus a weight check at his pediatrician's. So... if I haven't called you back -- you know I'm not screening your call!
Our first visit was to Nutrition, where we had to see a new Nutritionist since ours is still on maternity leave from March (she comes back in November). We did like her-- she added more Polycose to his food, suggested we get insurance to pay for the Polycose (doing that right now!) and suggested we use the food processor on our dinner and give it to Brady for his, adding more calories and giving him more texture. Only thing, is that Brady is in a "No Food" strike right now because his two-year-old molars are coming in -- Brady's teeth are always the one thing he gets early or on time! He is taking his bottle so I'm not worried about him losing weight, and I think one just punctured through the other day so we are probably almost done.
Last Thursday Brady had his echo -- we have been going every six months because his heart problems seemed to stop escalating. This was no different -- no changes since March! Yeah! We don't go back til next March now. The only pain we had that day was waiting for the doctor because he was called to an emergency. We ended up not leaving until rush-hour traffic was starting and we were sans Grandma this trip. Looong day -- but good results. :)
Friday we went to Genetics. The ever-witty Teresa summed up the visit nicely for me: "What have you been doing? That's great, keep it up. Bye!" We love our geneticist so this visit is always pretty painless. She did recommend for Brady to see a Neurologist, only because he hasn't yet, not for any specific reason. Also, she wants his hearing tested again since it hasn't been done since he was five months old. She was pleased with his abilities, happy he was seeing PT three times a week plus the other EI appointments, and thought he was extremely cute. :) She said she wanted to keep an eye on his growth because he was barely on the WS curves for both height and weight. She is also having the coordinator from the Williams Clinic at Children's contact me so we can get in on that, which would be fantastic. We would see all his doctors over a few days and hook up with other families.
Tomorrow we go to Orthopedics (his PT gave me a laundry list to go over with him) and then OT at the hospital for measurements for possible splints for his hands. Thursday we go to the Opthomologist, where Brady will probably get into big trouble for not wearing his glasses. Hopefully she will solve that problem for us!
We were able to hook up with Teresa and Shawn both Thursday and Friday while they were doing Clare's pre-op then surgery. Good to see them, but not for good reasons. Please send your prayers out to Clare for a speedy recovery. Check out her updates here: http://www.claresjourney.blogspot.com/
And on top of that, we have all of Brady's annual visits coming up. Within two weeks, Brady and I (and Grandma) have made/will make five separate visits to Children's Hospital, plus his normal therapy appointments (which Teresa has graciously pointed out to me is seven hours a week), plus a weight check at his pediatrician's. So... if I haven't called you back -- you know I'm not screening your call!
Our first visit was to Nutrition, where we had to see a new Nutritionist since ours is still on maternity leave from March (she comes back in November). We did like her-- she added more Polycose to his food, suggested we get insurance to pay for the Polycose (doing that right now!) and suggested we use the food processor on our dinner and give it to Brady for his, adding more calories and giving him more texture. Only thing, is that Brady is in a "No Food" strike right now because his two-year-old molars are coming in -- Brady's teeth are always the one thing he gets early or on time! He is taking his bottle so I'm not worried about him losing weight, and I think one just punctured through the other day so we are probably almost done.
Last Thursday Brady had his echo -- we have been going every six months because his heart problems seemed to stop escalating. This was no different -- no changes since March! Yeah! We don't go back til next March now. The only pain we had that day was waiting for the doctor because he was called to an emergency. We ended up not leaving until rush-hour traffic was starting and we were sans Grandma this trip. Looong day -- but good results. :)
Friday we went to Genetics. The ever-witty Teresa summed up the visit nicely for me: "What have you been doing? That's great, keep it up. Bye!" We love our geneticist so this visit is always pretty painless. She did recommend for Brady to see a Neurologist, only because he hasn't yet, not for any specific reason. Also, she wants his hearing tested again since it hasn't been done since he was five months old. She was pleased with his abilities, happy he was seeing PT three times a week plus the other EI appointments, and thought he was extremely cute. :) She said she wanted to keep an eye on his growth because he was barely on the WS curves for both height and weight. She is also having the coordinator from the Williams Clinic at Children's contact me so we can get in on that, which would be fantastic. We would see all his doctors over a few days and hook up with other families.
Tomorrow we go to Orthopedics (his PT gave me a laundry list to go over with him) and then OT at the hospital for measurements for possible splints for his hands. Thursday we go to the Opthomologist, where Brady will probably get into big trouble for not wearing his glasses. Hopefully she will solve that problem for us!
We were able to hook up with Teresa and Shawn both Thursday and Friday while they were doing Clare's pre-op then surgery. Good to see them, but not for good reasons. Please send your prayers out to Clare for a speedy recovery. Check out her updates here: http://www.claresjourney.blogspot.com/
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