When Hayden is hungry, that boy can eat.
Like many kids there are some days when he simply isn't hungry, but when he has a good appetite-- move over & watch out. He will easily consume larger-than-adult portions. He has always been that way since infancy... (not the portion size of course, but just eating well in general).
Even as a newborn when babies are on a liquid diet, he used to make this sort of humming noise when he was being fed. Then when he graduated to puréed foods, we used to say he was just like a bird... he would sit there with his little mouth in an "O" shape waiting for someone to put the spoon in. Feeding time was almost always successful & it was extremely easy to ensure he had balanced nutrition.
But as he developed, so did his now sensory-driven diet. I don't think there are many foods that he doesn't like the taste of, but holy hell do textures get in the way of our options! It is super frustrating.
The list of "typical" foods he will not touch has always included many items that are practically staples for most people. Such as... a bowl of cereal & milk... juice... pasta... sandwiches in general... yogurt... most fresh fruits & vegetables that are firm, smooth, & moist-- he can't handle the texture.
He will eat applesauce sometimes, also he has had watermelon before, & occasionally (but rarely) he will eat a spec of a broccoli floret or an asparagus tip (or something like that)... but not often. Thank goodness I can put chopped spinach in his omelets-- (thank goodness he'll eat eggs--) but that's pretty much it from a fruit or veggie standpoint.
On Monday I was making Dan a sandwich & Hayden said he wanted one too. It's pretty common that H will ask for something which he either doesn't really want or would not eat anyway. I humored him & thought what the heck... it's just a roll & cold cuts. If it gets thrown out, it gets thrown out... not like I have to stand at the stove & cook something.
I made his sandwich on a round kaiser roll (sans cheese or mayo), & then quartered it. He ate the whole damn thing & then asked for more.
!
Flippin' amazing!
But we thought for sure this was a fluke. One & done. He must have just decided he wanted a sandwich, but it will never happen again. It was awesome to witness, though-- from a kid who just doesn't really eat foods that you have to pick up & bite into. For example, an apple or a chicken drumstick... he feels the same way about sandwiches. He will eat pizza (sloppily) & doughnuts of course (while either wearing half or covering the floor with it), but mostly food has to be cut up for him... even hot dogs. It's sort of a long explanation about oral motor challenges, but you'll have to take my word for it.
The point is, something very simple that most people would not think twice about for one second is a very big deal for H: just eating a sandwich.
Well, the next day, he was with my father while I was at work. After I got home my dad told me they went to the diner for lunch, & H had a hamburger.
Woah. What?! Basically the sound of a record scratching went off in my head.
I said, "I don't understand. He wanted the meat? You just cut it up for him?"
Just to get you up-to-speed the thing is, H will eat meatballs or meatloaf but never burger patties. We've tried.
My Dad said, "No, he ate it on a bun. I cut it into quarters & he ate it & then he asked for more. I ordered another one but he didn't eat the second one."
So I said, "How did you know he was going to eat it?"
(I mean, out in public at a restaurant with H... the last thing you want to do is order something he might not eat, when you know he is actually hungry.)
And then my Dad said he ordered chicken fingers for himself & figured they could just switch.
Since then, Hayden has eaten two more sandwiches... one for lunch on the very first day of school, & then again this morning!
Granted it was a breakfast replacement because he was being stubborn, but for this I did not care.
My kid ate a sandwich! He ate sandwiches!
---
Clouds, May 2010
Friday, September 6, 2013
Wednesday, September 4, 2013
good yom tov & good apples
I went to one of those big chain office stores the other day, to get school supplies for Hayden. Specifically I was fulfilling the list sent from his 2nd Grade teacher.
This is the first year that we got one of those lists & I can honestly remember every item on it without even looking: 3 different color-specific folders, plus 1 of our own choosing for Spanish, a composition notebook, 2 pencils, 3 highlighters, wet-erase markers, chalk, scissors, 1 large book cover, 1 small book cover, & a glue stick. These are the things they need for Grade 2.
(Oh, & he has Science this year too!)
Anyway, the place was way more crowded than I have ever seen it-- kind of like a home improvement store the day before a blizzard is predicted to hit. It seemed like every customer in there had a minimum of three children in tow, with each child holding their own teacher-supplied list of necessities. If they had all been plucked directly from the store & placed anywhere outside, it would have looked like a scavenger hunt.
I took a shortcut by interrupting a young sales person & asking for directions to this & that aisle, so I could get the heck out of there as quickly as possible. He managed to escape me when I still had one item to go, so I summoned an older woman from her ladder as she was adding stock to those higher shelves... the ones far above the reach of the ducks on the ground, where there is always something you need & never anyone around to get it down for you.
I almost bought whatever she was putting up there just for the sake of convenience... it reminded me of passing an empty deli department when you don't even need to take a number, & consequently find yourself asking for a half pound of low sodium turkey which you already have at home. But the oddly enthusiastic meat cutter in white garb & enticing idea of not having to wait in any line is too tempting to pass up. (I sort of wonder why those people are always so chipper anyway, but I imagine that guiding a deli slicer could potentially feel powerful & almost fun, challenging yourself to see just how thin you can shave the cheese. Better than cutting it, anyway.)
Well, I'm trying to lighten the air but I actually have a pretty significant observation to share.
I recently had a heated conversation via email, with a woman from an agency that services people with special needs of all ages-- including geriatrics. They pair up therapists & home care specialists with clients seeking assistance. They are linked with various other agencies as well, to expand their network of resources.
We worked together this summer to incorporate childcare services, along with H's regular sitter, who actually has other commitments & can not give us all of her time (how dare she).
For the most part things went well this summer. But upon these home care services coming to a close as the new school year begins, the woman from the agency was now encouraging us to be paired with a therapist. She is a strong advocate & I suppose she was only trying to offer her professional opinion.
However, very long story short, we already learned through a lot of investigating, advocating, etc... insurance will not cover these services. And the fact is, they are beyond our resources to pay out of pocket.
That being said, the truth is during the regular school year Hayden's curriculum is not exactly lacking. During the summer months his program is significantly reduced, but for the rest of the year... he has at least 100% support if not more.
But this woman was persistent & began to make assumptions. She told me that by sitting & waiting we were stunting Hayden's growth, & that his school district is not equipped to handle his needs. This is just the tip of the iceberg as far as her "expert" opinion. She even judged some of Hayden's specific accomplishments, as being less progress than they should be, for an 8 year old. And no, unfortunately I am not kidding.
So here I am doing all this preparation for H's Second Grade year, & I foolishly start thinking about what she said & pretty soon I get myself in a funk. Because the reality is his day will not be the same as the other Second Graders. He will have all the same supplies & he will be included for some things, but not others. He will fulfill most of his academics in a different setting that is more appropriate for him... the pace, the teacher-student ratio, the material, etc.
Even though I believe Hayden's school schedule has a truly beneficial balance for his personal growth, I do occasionally second-guess. Because as the kids grow up-- yes H continues to make progress-- but the developmental gap between him & his peers only widens.
But then I started to really sit & think about how far we have come... how far Hayden has come...
And I sat down & responded to this woman. Here is just some of what I had to say. I have omitted portions of personal information, but I also borrowed a lot of her own verbiage & threw it right back:
"I have been advocating for the best possible services & curriculum for Hayden, literally since the first month we had his diagnosis in November of 2006. Never for one moment am I in any sort of "sit & wait" mode, regardless how difficult something is to achieve.
In addition to all of the services that my husband & I were personally able to obtain for Hayden-- (beginning with tripling his Early Intervention hours, & through preschool when we customized an all-day program for him which didn't even previously exist, & now during his elementary school years to appropriately balance his academics with his social needs--) we have also supplemented countless hours of private therapies over the years.
This has been a tireless journey that I can not begin to summarize in a few sentences. I know in my heart of hearts that he is being challenged to his ability of achievement. From our point of view... I will say the school district has proven to be equipped to fully educate a child with the type of needs Hayden has. Budget cuts pose a continuous challenge, but there is never a time when my voice is not heard or my concerns are not addressed.
At one point we actually had a specialist from the FX clinic in NY come & observe Hayden at school. Not so much because we had problems, but rather we wanted reassurance that we had an appropriate program in place. And truthfully, his team was equally eager for the input. Following the visit, this doctor who has 30+ years working with kids with fragile x... said that the people who work with Hayden 'renewed her faith in public education'. (The fact is, many of the people she met that day are still a part of his team... the same therapists, & so forth.)
I have never felt we were stunting Hayden's accomplishments/ achievements.... His needs are always our primary concern. I know whatever we line up for Hayden in the future, he will be in good hands."
She has not yet replied.
Meanwhile, I was at H's school today for my 2nd annual FX talk with faculty. (You know, because my decisions are clearly stunting Hayden's growth.) But anyway, following my brief presentation, a few minutes of mingling, & a couple of side conversations... I learned some pretty jaw-dropping news about staffing & other details for this year (i.e. tomorrow).
Despite all of the changes that H will surely notice, I was simultaneously reassured (believe it or not). There are definitely some kids who will have way more adjustments to deal with, than he.
The quiet way some of the teachers responded to my eyebrow-raising how-can-that-be comments, & all of the how-can-they-do-that rhetorical questions, strongly demonstrated the difference between students whose parents are very involved, & students whose parents are not as involved.
Certain tight-lipped teachers who did little more than nod, offered strong (albeit subtle) suggestions... just how influential parental involvement really is.
Not that I didn't begin suspecting this some 5 years ago when H first entered the school system (for pre-K)... & I literally threw myself into the thick of it (at the very least to ease my own anxiety & at the very most to make a difference)... but wow... today offered some concrete proof.
This evening marked the beginning of Rosh Hashanah, which is the Jewish New Year. Ten days following Rosh Hashanah or the Day of Judgement, is Yom Kippur-- the Day of Atonement. It is believed that G-d opens the Book of Life on Rosh Hashanah, & the 10 days between Rosh Hashanah & Yom Kippur are viewed as an opportunity for Jews to repent, to ensure a good fate. During Rosh Hashanah it is a mitzvah to hear the shofar or ram's horn blown, as a literal & spiritual "call" for this special time of year.
There is not much of a Jewish population where we live, & as a matter of fact the first day of school is on Rosh Hashanah... something that never would've happened in the township where I grew up.
But on this day I should never discount the fact that the incredible
people on H's team are truly good apples, & they are always looking out for my guy. Perhaps even more than I realized.
I brought snack packs of sliced apples to the meeting today... sort of a dual-meaning gesture: apples for the teachers & apples for Rosh Hashanah.
H's teacher is bringing in honey tomorrow to share the sweet New Year treat with the kids, on their first day of the new school year.
--
So what can I say... do I still have Second-Grade anxiety?
Yes.
But Second-Grade hope? Yes, that too.
Wishing a Good Yom Tov, or Good Holiday, to all who observe.
This is the first year that we got one of those lists & I can honestly remember every item on it without even looking: 3 different color-specific folders, plus 1 of our own choosing for Spanish, a composition notebook, 2 pencils, 3 highlighters, wet-erase markers, chalk, scissors, 1 large book cover, 1 small book cover, & a glue stick. These are the things they need for Grade 2.
(Oh, & he has Science this year too!)
Anyway, the place was way more crowded than I have ever seen it-- kind of like a home improvement store the day before a blizzard is predicted to hit. It seemed like every customer in there had a minimum of three children in tow, with each child holding their own teacher-supplied list of necessities. If they had all been plucked directly from the store & placed anywhere outside, it would have looked like a scavenger hunt.
I took a shortcut by interrupting a young sales person & asking for directions to this & that aisle, so I could get the heck out of there as quickly as possible. He managed to escape me when I still had one item to go, so I summoned an older woman from her ladder as she was adding stock to those higher shelves... the ones far above the reach of the ducks on the ground, where there is always something you need & never anyone around to get it down for you.
I almost bought whatever she was putting up there just for the sake of convenience... it reminded me of passing an empty deli department when you don't even need to take a number, & consequently find yourself asking for a half pound of low sodium turkey which you already have at home. But the oddly enthusiastic meat cutter in white garb & enticing idea of not having to wait in any line is too tempting to pass up. (I sort of wonder why those people are always so chipper anyway, but I imagine that guiding a deli slicer could potentially feel powerful & almost fun, challenging yourself to see just how thin you can shave the cheese. Better than cutting it, anyway.)
Well, I'm trying to lighten the air but I actually have a pretty significant observation to share.
I recently had a heated conversation via email, with a woman from an agency that services people with special needs of all ages-- including geriatrics. They pair up therapists & home care specialists with clients seeking assistance. They are linked with various other agencies as well, to expand their network of resources.
We worked together this summer to incorporate childcare services, along with H's regular sitter, who actually has other commitments & can not give us all of her time (how dare she).
For the most part things went well this summer. But upon these home care services coming to a close as the new school year begins, the woman from the agency was now encouraging us to be paired with a therapist. She is a strong advocate & I suppose she was only trying to offer her professional opinion.
However, very long story short, we already learned through a lot of investigating, advocating, etc... insurance will not cover these services. And the fact is, they are beyond our resources to pay out of pocket.
That being said, the truth is during the regular school year Hayden's curriculum is not exactly lacking. During the summer months his program is significantly reduced, but for the rest of the year... he has at least 100% support if not more.
But this woman was persistent & began to make assumptions. She told me that by sitting & waiting we were stunting Hayden's growth, & that his school district is not equipped to handle his needs. This is just the tip of the iceberg as far as her "expert" opinion. She even judged some of Hayden's specific accomplishments, as being less progress than they should be, for an 8 year old. And no, unfortunately I am not kidding.
So here I am doing all this preparation for H's Second Grade year, & I foolishly start thinking about what she said & pretty soon I get myself in a funk. Because the reality is his day will not be the same as the other Second Graders. He will have all the same supplies & he will be included for some things, but not others. He will fulfill most of his academics in a different setting that is more appropriate for him... the pace, the teacher-student ratio, the material, etc.
Even though I believe Hayden's school schedule has a truly beneficial balance for his personal growth, I do occasionally second-guess. Because as the kids grow up-- yes H continues to make progress-- but the developmental gap between him & his peers only widens.
But then I started to really sit & think about how far we have come... how far Hayden has come...
And I sat down & responded to this woman. Here is just some of what I had to say. I have omitted portions of personal information, but I also borrowed a lot of her own verbiage & threw it right back:
"I have been advocating for the best possible services & curriculum for Hayden, literally since the first month we had his diagnosis in November of 2006. Never for one moment am I in any sort of "sit & wait" mode, regardless how difficult something is to achieve.
In addition to all of the services that my husband & I were personally able to obtain for Hayden-- (beginning with tripling his Early Intervention hours, & through preschool when we customized an all-day program for him which didn't even previously exist, & now during his elementary school years to appropriately balance his academics with his social needs--) we have also supplemented countless hours of private therapies over the years.
This has been a tireless journey that I can not begin to summarize in a few sentences. I know in my heart of hearts that he is being challenged to his ability of achievement. From our point of view... I will say the school district has proven to be equipped to fully educate a child with the type of needs Hayden has. Budget cuts pose a continuous challenge, but there is never a time when my voice is not heard or my concerns are not addressed.
At one point we actually had a specialist from the FX clinic in NY come & observe Hayden at school. Not so much because we had problems, but rather we wanted reassurance that we had an appropriate program in place. And truthfully, his team was equally eager for the input. Following the visit, this doctor who has 30+ years working with kids with fragile x... said that the people who work with Hayden 'renewed her faith in public education'. (The fact is, many of the people she met that day are still a part of his team... the same therapists, & so forth.)
I have never felt we were stunting Hayden's accomplishments/ achievements.... His needs are always our primary concern. I know whatever we line up for Hayden in the future, he will be in good hands."
She has not yet replied.
Meanwhile, I was at H's school today for my 2nd annual FX talk with faculty. (You know, because my decisions are clearly stunting Hayden's growth.) But anyway, following my brief presentation, a few minutes of mingling, & a couple of side conversations... I learned some pretty jaw-dropping news about staffing & other details for this year (i.e. tomorrow).
Despite all of the changes that H will surely notice, I was simultaneously reassured (believe it or not). There are definitely some kids who will have way more adjustments to deal with, than he.
The quiet way some of the teachers responded to my eyebrow-raising how-can-that-be comments, & all of the how-can-they-do-that rhetorical questions, strongly demonstrated the difference between students whose parents are very involved, & students whose parents are not as involved.
Certain tight-lipped teachers who did little more than nod, offered strong (albeit subtle) suggestions... just how influential parental involvement really is.
Not that I didn't begin suspecting this some 5 years ago when H first entered the school system (for pre-K)... & I literally threw myself into the thick of it (at the very least to ease my own anxiety & at the very most to make a difference)... but wow... today offered some concrete proof.
This evening marked the beginning of Rosh Hashanah, which is the Jewish New Year. Ten days following Rosh Hashanah or the Day of Judgement, is Yom Kippur-- the Day of Atonement. It is believed that G-d opens the Book of Life on Rosh Hashanah, & the 10 days between Rosh Hashanah & Yom Kippur are viewed as an opportunity for Jews to repent, to ensure a good fate. During Rosh Hashanah it is a mitzvah to hear the shofar or ram's horn blown, as a literal & spiritual "call" for this special time of year.
There is not much of a Jewish population where we live, & as a matter of fact the first day of school is on Rosh Hashanah... something that never would've happened in the township where I grew up.
But on this day I should never discount the fact that the incredible
people on H's team are truly good apples, & they are always looking out for my guy. Perhaps even more than I realized.
I brought snack packs of sliced apples to the meeting today... sort of a dual-meaning gesture: apples for the teachers & apples for Rosh Hashanah.
H's teacher is bringing in honey tomorrow to share the sweet New Year treat with the kids, on their first day of the new school year.
--
So what can I say... do I still have Second-Grade anxiety?
Yes.
But Second-Grade hope? Yes, that too.
Wishing a Good Yom Tov, or Good Holiday, to all who observe.
Wednesday, August 14, 2013
guilty blessing
Remember the clinical trial I was posting up the you-know-what about, a couple of months ago?
At the time my social media feeds were completely filled with one heartbreaking story after the next... due to the abrupt end to the experimental study, of the drug Arbaclofen / STX209.
There were online petitions, numerous articles (including Holly's story in The New York Times), & even more coverage as many families also contacted their local news stations. Although these very vulnerable families were only seeing the beginning of a very difficult time... they did not hesitate to put themselves out there in front of the media... to share their story... & to fight for their children.
The most recent media coverage of the Welin family's story is one which I strongly encourage you to watch. It was a sudden, fresh reminder of a complete range of emotions for me.
In the words of Caleb's incredible mom, Melissa:
"Their son Caleb is about a year older than Hayden, & definitely has personality traits which constantly remind me of H. Incidentally, Hayden was supposed to be a part of this trial too-- at least that was the plan.
Over the years we have been to clinics on both coasts & seen countless specialists. So let me be blunt: everyone said Hayden would eventually need drugs. Well at first it was therapy, therapy, therapy... & it still is... but then your child approaches that age when you're strongly encouraged to consider treatment medications, in addition to the therapies.
Our little kid was growing into a bid kid, his behaviors were getting tougher, our challenges were increasing, expectations were changing... & just when I thought we had this figured out, I think that's also when we began to realize just how much help Hayden really needs.
Very long story short: instead of trying something already on the market which can treat symptoms of fragile x (such as anxiety, attention defecit, & so forth), we educated ourselves about the various clinical trial options.
There was one study drug in particular which seemed the most appropriate for Hayden: STX209, also known as Arbaclofen. The hiccup, however, was that the study center closest to us was still awaiting FDA approval to lower the age inclusion. The approval was delayed, & delayed again, & then delayed some more.
Finally we had the green light. I scheduled a parent intake over the phone to confirm that H would qualify, & soon enough we would have access to this particularly promising treatment we'd been hearing so much about.
After years & years of all the clinic visits & all the doctors... after years & years of all the conversations with specialists, & those private ones amongst ourselves... after years & years of weighing the options & all the pros & cons... this is what it came down to. My hope was so strong I felt like I could see it.
But on the evening of the parent intake following a series of questions, the reality was instead the most unexpected, hard-hitting sucker punch: Hayden did not qualify. The words of the researcher on the other end of the phone seemed to hit me in my gut, "he does not even come close," he said.
The FDA mandates one target symptom. Of course in terms of helping someone with fragile x or autism, honing in on a single target is nearly impossible. That aside, pharmaceutical companies obviously must play by the rules & the target symptom of this clinical trial was social withdrawal.
Hayden just happens to be very social, & engaging. These are some of the reasons that no one ever suspected the specific type of developmental disability he has... which typically exhibits autistic-like characteristics.
I thought this news was the worst of it. I thought the worst part of this situation was the fact that Hayden did not qualify for this clinical trial...
But at least we had hope from the other participants. At least they were seeing continued improvement, various promising results, & not just in terms of the ONE target symptom. Many times over it was explained to us that just because H did not qualify for the trial, is not to say that he would not benefit from this drug... & we should expect that he will. Soon.
One day soon. Out of all the ongoing trials, this particular study medication was closest to FDA approval.
But then came the second blow which hit everyone very hard. Seaside Therapeutics-- the company which owns the patent on Arbaclofen-- sent a communication to all of the participating study centers. After learning they would be unable to secure needed financing, they were announcing the end of the extension trial medication known as STX209.
We had been patiently waiting our turn... it was as if a carnival operator shut down the ride right in front of us. But the worst emotion was yet to come.
More than being upset that H did not qualify for the trial in the first place... more than being upset that the study came to such an abrupt halt... & more than being devastated for the families mourning the loss of the person that this treatment had allowed their children to be... I felt an eery sense of relief. And with that, a tremendous amount of guilt.
We could have been one more among the numerous families affected by this. We were supposed to be, but we weren't.
I encourage you to please read their stories and then share them with others. For the more than 40 families on that site alone, & all the other people within the fragile x community who are affected by this... share one, share some, or share all... but know that your support does make a difference.
--
At the time my social media feeds were completely filled with one heartbreaking story after the next... due to the abrupt end to the experimental study, of the drug Arbaclofen / STX209.
There were online petitions, numerous articles (including Holly's story in The New York Times), & even more coverage as many families also contacted their local news stations. Although these very vulnerable families were only seeing the beginning of a very difficult time... they did not hesitate to put themselves out there in front of the media... to share their story... & to fight for their children.
The most recent media coverage of the Welin family's story is one which I strongly encourage you to watch. It was a sudden, fresh reminder of a complete range of emotions for me.
In the words of Caleb's incredible mom, Melissa:
"Their son Caleb is about a year older than Hayden, & definitely has personality traits which constantly remind me of H. Incidentally, Hayden was supposed to be a part of this trial too-- at least that was the plan.
Over the years we have been to clinics on both coasts & seen countless specialists. So let me be blunt: everyone said Hayden would eventually need drugs. Well at first it was therapy, therapy, therapy... & it still is... but then your child approaches that age when you're strongly encouraged to consider treatment medications, in addition to the therapies.
Our little kid was growing into a bid kid, his behaviors were getting tougher, our challenges were increasing, expectations were changing... & just when I thought we had this figured out, I think that's also when we began to realize just how much help Hayden really needs.
Very long story short: instead of trying something already on the market which can treat symptoms of fragile x (such as anxiety, attention defecit, & so forth), we educated ourselves about the various clinical trial options.
There was one study drug in particular which seemed the most appropriate for Hayden: STX209, also known as Arbaclofen. The hiccup, however, was that the study center closest to us was still awaiting FDA approval to lower the age inclusion. The approval was delayed, & delayed again, & then delayed some more.
Finally we had the green light. I scheduled a parent intake over the phone to confirm that H would qualify, & soon enough we would have access to this particularly promising treatment we'd been hearing so much about.
After years & years of all the clinic visits & all the doctors... after years & years of all the conversations with specialists, & those private ones amongst ourselves... after years & years of weighing the options & all the pros & cons... this is what it came down to. My hope was so strong I felt like I could see it.
But on the evening of the parent intake following a series of questions, the reality was instead the most unexpected, hard-hitting sucker punch: Hayden did not qualify. The words of the researcher on the other end of the phone seemed to hit me in my gut, "he does not even come close," he said.
The FDA mandates one target symptom. Of course in terms of helping someone with fragile x or autism, honing in on a single target is nearly impossible. That aside, pharmaceutical companies obviously must play by the rules & the target symptom of this clinical trial was social withdrawal.
Hayden just happens to be very social, & engaging. These are some of the reasons that no one ever suspected the specific type of developmental disability he has... which typically exhibits autistic-like characteristics.
I thought this news was the worst of it. I thought the worst part of this situation was the fact that Hayden did not qualify for this clinical trial...
But at least we had hope from the other participants. At least they were seeing continued improvement, various promising results, & not just in terms of the ONE target symptom. Many times over it was explained to us that just because H did not qualify for the trial, is not to say that he would not benefit from this drug... & we should expect that he will. Soon.
One day soon. Out of all the ongoing trials, this particular study medication was closest to FDA approval.
But then came the second blow which hit everyone very hard. Seaside Therapeutics-- the company which owns the patent on Arbaclofen-- sent a communication to all of the participating study centers. After learning they would be unable to secure needed financing, they were announcing the end of the extension trial medication known as STX209.
We had been patiently waiting our turn... it was as if a carnival operator shut down the ride right in front of us. But the worst emotion was yet to come.
More than being upset that H did not qualify for the trial in the first place... more than being upset that the study came to such an abrupt halt... & more than being devastated for the families mourning the loss of the person that this treatment had allowed their children to be... I felt an eery sense of relief. And with that, a tremendous amount of guilt.
We could have been one more among the numerous families affected by this. We were supposed to be, but we weren't.
I encourage you to please read their stories and then share them with others. For the more than 40 families on that site alone, & all the other people within the fragile x community who are affected by this... share one, share some, or share all... but know that your support does make a difference.
--
Thursday, July 25, 2013
the 22nd... continued.
In honor of
Fragile X Awareness Month, I want to provide a better perspective of
how this fragile x gene can literally be hidden for generations. And how we came to learn about it.
This is the continuation of my post about the 22nd. As mentioned in Part One, here is the letter which until now has only existed in my thoughts:
---
Dear Poppy,
I miss you all the time. I miss all of my grandparents. I do find some comfort knowing you & Grandma are together now just as I did when Grandma Phyllis passed-- knowing she was reunited with Poppy Shoore-- but sometimes everything feels too fresh.
As I believe you know, Hayden was born about five months after you passed away. You might not know this part, but you two share a very special bond.
If you think back to when your tremors began you probably recall that things like writing or holding a utensil became very difficult for you. Even though we already had an answer that it was definitely not Parkinson's, the doctors weren't sure what was causing the tremors. And for you, a retired physician yourself, this was most bothersome.
Eventually the diagnosis was excess fluid on the brain, a part of the natural aging process & not too uncommon. And as the years went on & the rest of your body was increasingly affected until your ability to walk had nearly diminished, none of us had any idea whatsoever just how important of a clue this really was.
It was evident early on in Hayden's life that he was delayed, but it seemed nothing more than that. He was a big baby... I remember telling Grandma when the Pediatrician said his height (length) was off-the-charts. She replied, "Well then tell them to get a new chart!"
I could summarize a timeline of Hayden's delayed milestones for you, but those specifics are not what I want to focus on. In November of 2006 he tested positive for Fragile X. Fragile X Syndrome is an inherited form of intellectual disability, & a condition that causes various learning & behavioral challenges.
After we learned about the genetic pattern of fragile x we traced it back, & this may have been what your brother was born with. (I did not even realize that you & Aunt Bevy had a brother.) You were a carrier of the gene & unknowingly passed it on in a carrier form, to all three of your daughters including my mom of course. That means for me, Jenna, Ben, & Jessie there was a 50/50 chance of the gene being passed.
You did not pass it on to Uncle Irl because the defect is on the x chromosome (hence the name). Therefore, there was no chance of this being passed to Jackie, Max, or Justin.
When I had a blood test following Hayden's results, we actually learned that I am not just a carrier. When the breaks (or repeats) on the x chromosome exceed a certain range, that is an indication of the full mutation of fragile x.
Sometimes in females, since we have two x chromosomes, our healthy x chromosome will compensate. That is what happened with me.
In the first part of this blog post I joke how it would hardly take the birth of a royal baby for me to remember the 22nd. Not just because July 22nd is National Fragile X Awareness Day-- but also because the #22 has specific meaning to me.
There is one more fact about this number which I hadn't mentioned yet.
Apparently via blood tests we can also determine the percentage at which a healthier x chromosome is compensating. You can guess on the number they came back with... keep in mind, it's the dominant percentage.
Yes, my other x is compensating at 78%. So the remaining 22% is a different story (I'm typing with a smirk).
Poppy, your tremors were a result of something called FXTAS (pronounced 'fax-tas'). This is an acronym for Fragile X-Associated Tremor/Ataxia Syndrome. This is something that male carriers of fragile x develop later in life.
Throughout these past 6 1/2 years or so, since Hayden was diagnosed, I have gone back & forth in my mind countless times. While I wish so, so much that Dan & I starting a family could have given you some sort of closure before you passed-- (I mean for yourself & why you had tremors--) there is a part of me that fears I may have simultaneously broken your heart just a little bit. I think about just how much you wanted a great grandchild* & I would always be worrying if you truly remained at peace.
I want to tell you that even on our absolute toughest of days, you need not worry... & I mean that. First of all, Hayden is otherwise very physically healthy. He is thriving & he is strong... but most importantly... you must know that he is genuinely happy. He has always worn a smile well.
All he knows is that he has a family who loves him, provides for him, & supports him. He has Grandparents who dote over him, Aunts & Uncles who cherish him, cousins who adore his company (& that number is growing!)... & he is generally quite content. And I should mention his teachers & other people who work with him truly think the world of him, & they have about as much motivation as we do to see him succeed in life. I honestly believe that.
He is growing up in a borderline-rural town where more people probably know him, than us. This is home to him & it's evident he finds comfort in that.
We love you very much & we too are comforted, knowing Hayden has so many angels watching over him.
xo
---
I wanted to share this to give Fragile X Awareness Month the attention it deserves.
Thank you for reading :)
-
This is the continuation of my post about the 22nd. As mentioned in Part One, here is the letter which until now has only existed in my thoughts:
---
Dear Poppy,
I miss you all the time. I miss all of my grandparents. I do find some comfort knowing you & Grandma are together now just as I did when Grandma Phyllis passed-- knowing she was reunited with Poppy Shoore-- but sometimes everything feels too fresh.
As I believe you know, Hayden was born about five months after you passed away. You might not know this part, but you two share a very special bond.
If you think back to when your tremors began you probably recall that things like writing or holding a utensil became very difficult for you. Even though we already had an answer that it was definitely not Parkinson's, the doctors weren't sure what was causing the tremors. And for you, a retired physician yourself, this was most bothersome.
Eventually the diagnosis was excess fluid on the brain, a part of the natural aging process & not too uncommon. And as the years went on & the rest of your body was increasingly affected until your ability to walk had nearly diminished, none of us had any idea whatsoever just how important of a clue this really was.
It was evident early on in Hayden's life that he was delayed, but it seemed nothing more than that. He was a big baby... I remember telling Grandma when the Pediatrician said his height (length) was off-the-charts. She replied, "Well then tell them to get a new chart!"
I could summarize a timeline of Hayden's delayed milestones for you, but those specifics are not what I want to focus on. In November of 2006 he tested positive for Fragile X. Fragile X Syndrome is an inherited form of intellectual disability, & a condition that causes various learning & behavioral challenges.
After we learned about the genetic pattern of fragile x we traced it back, & this may have been what your brother was born with. (I did not even realize that you & Aunt Bevy had a brother.) You were a carrier of the gene & unknowingly passed it on in a carrier form, to all three of your daughters including my mom of course. That means for me, Jenna, Ben, & Jessie there was a 50/50 chance of the gene being passed.
You did not pass it on to Uncle Irl because the defect is on the x chromosome (hence the name). Therefore, there was no chance of this being passed to Jackie, Max, or Justin.
When I had a blood test following Hayden's results, we actually learned that I am not just a carrier. When the breaks (or repeats) on the x chromosome exceed a certain range, that is an indication of the full mutation of fragile x.
Sometimes in females, since we have two x chromosomes, our healthy x chromosome will compensate. That is what happened with me.
In the first part of this blog post I joke how it would hardly take the birth of a royal baby for me to remember the 22nd. Not just because July 22nd is National Fragile X Awareness Day-- but also because the #22 has specific meaning to me.
There is one more fact about this number which I hadn't mentioned yet.
Apparently via blood tests we can also determine the percentage at which a healthier x chromosome is compensating. You can guess on the number they came back with... keep in mind, it's the dominant percentage.
Yes, my other x is compensating at 78%. So the remaining 22% is a different story (I'm typing with a smirk).
Poppy, your tremors were a result of something called FXTAS (pronounced 'fax-tas'). This is an acronym for Fragile X-Associated Tremor/Ataxia Syndrome. This is something that male carriers of fragile x develop later in life.
Throughout these past 6 1/2 years or so, since Hayden was diagnosed, I have gone back & forth in my mind countless times. While I wish so, so much that Dan & I starting a family could have given you some sort of closure before you passed-- (I mean for yourself & why you had tremors--) there is a part of me that fears I may have simultaneously broken your heart just a little bit. I think about just how much you wanted a great grandchild* & I would always be worrying if you truly remained at peace.
I want to tell you that even on our absolute toughest of days, you need not worry... & I mean that. First of all, Hayden is otherwise very physically healthy. He is thriving & he is strong... but most importantly... you must know that he is genuinely happy. He has always worn a smile well.
All he knows is that he has a family who loves him, provides for him, & supports him. He has Grandparents who dote over him, Aunts & Uncles who cherish him, cousins who adore his company (& that number is growing!)... & he is generally quite content. And I should mention his teachers & other people who work with him truly think the world of him, & they have about as much motivation as we do to see him succeed in life. I honestly believe that.
He is growing up in a borderline-rural town where more people probably know him, than us. This is home to him & it's evident he finds comfort in that.
We love you very much & we too are comforted, knowing Hayden has so many angels watching over him.
xo
---
I wanted to share this to give Fragile X Awareness Month the attention it deserves.
Thank you for reading :)
-
Wednesday, July 24, 2013
the 22nd
I had no idea that Will & Kate were formally known as William & Catherine Mountbatten-Windsor. Mountbatten-Windsor? (And growing up I thought Zamelsky was a mouthful.) That aside, since the royal baby was in fact born on National Fragile X Awareness Day... it is my humble opinion that somebody over there in that Palace should have at least given our FX community a shout-out. That would definitely help raise awareness!
It would hardly take the birth of a Prince for me to remember "22"... that number has actually had significance to me for a long, long time. Right before I started Kindergarten we moved into house #22, & that is where my sister & I grew up. And not too long after my parents moved out of that house, my son entered this world on the 22nd of June.
And most recently I now know the 22nd of July as The official National Fragile X Awareness Day-- that day is actually recognized as such by Congress.
During the rest of Fragile X Awareness Month (otherwise known as July), the social media sites I use have been flooded with awesome & informative fragile x facts. I particularly love the photos of everyone within the FX community, & outside supporters alike, showing off their green fragile x attire :)
I joined the latest fundraising campaign as well, & although my page has unfortunately not met its goal (hint hint)... the New Jersey team as a whole has kicked some serious ass! The Fragile X Association of NJ is well in the lead of the Virtual 5k Event with more than $6,700 raised so far!
Personally I have been slightly distracted as far as raising awareness this month, with the sort of gusto I would normally exhibit.
June came & went on the most bittersweet note, with my son's 8th birthday being right on the heel's of my grandmother's passing... and... learning that my sister is expecting (which my heart has not stopped smiling since I heard the news)... truly <3
But in the moment this is back-to-back with the 4th of July holiday, & then began the annual surplus of July birthdays in our family... including my mom who had of course just lost her own mom...
But she was also saying goodbye with barely any proper closure, to her entire teaching career... because as life would have it, her retirement was happening simultaneously...
And might I add, as Hayden's summer program began we've also been exploring additional childcare with much-needed consistency, so we can both balance work/home schedules better... translation: serious stress on me as I am coordinating services with a special needs agency, & learning to put my trust into a complete stranger...
And speaking of working with someone new, Hayden's school also assigned a Behaviorist to his case... & this person who is supposed to be part of his summer curriculum has so far only contributed with a complete inability to properly communicate, or adhere to scheduling.
I think that's about it.
Well, except for the incident with my eye last week, which I could not properly describe without its own blog post or something. But long story short, H accidentally poked me in the eye with a screwdriver. (It is going to be okay... the corneal abrasion has healed & the blurriness is clearing up a little more each day.)
So, no. I have not given Fragile X Awareness Month the attention it deserves. Not that any awareness should ever be limited to an occasion, but this does deserve the proper attention. I will attempt to make up for that.
I am going to begin by sharing a very personal letter to one of my beloved late grandfathers... a letter which has only previously existed in my mind. But it will explain things quite well.
To be continued tomorrow...
---
It would hardly take the birth of a Prince for me to remember "22"... that number has actually had significance to me for a long, long time. Right before I started Kindergarten we moved into house #22, & that is where my sister & I grew up. And not too long after my parents moved out of that house, my son entered this world on the 22nd of June.
And most recently I now know the 22nd of July as The official National Fragile X Awareness Day-- that day is actually recognized as such by Congress.
During the rest of Fragile X Awareness Month (otherwise known as July), the social media sites I use have been flooded with awesome & informative fragile x facts. I particularly love the photos of everyone within the FX community, & outside supporters alike, showing off their green fragile x attire :)
I joined the latest fundraising campaign as well, & although my page has unfortunately not met its goal (hint hint)... the New Jersey team as a whole has kicked some serious ass! The Fragile X Association of NJ is well in the lead of the Virtual 5k Event with more than $6,700 raised so far!
Personally I have been slightly distracted as far as raising awareness this month, with the sort of gusto I would normally exhibit.
June came & went on the most bittersweet note, with my son's 8th birthday being right on the heel's of my grandmother's passing... and... learning that my sister is expecting (which my heart has not stopped smiling since I heard the news)... truly <3
But in the moment this is back-to-back with the 4th of July holiday, & then began the annual surplus of July birthdays in our family... including my mom who had of course just lost her own mom...
But she was also saying goodbye with barely any proper closure, to her entire teaching career... because as life would have it, her retirement was happening simultaneously...
And might I add, as Hayden's summer program began we've also been exploring additional childcare with much-needed consistency, so we can both balance work/home schedules better... translation: serious stress on me as I am coordinating services with a special needs agency, & learning to put my trust into a complete stranger...
And speaking of working with someone new, Hayden's school also assigned a Behaviorist to his case... & this person who is supposed to be part of his summer curriculum has so far only contributed with a complete inability to properly communicate, or adhere to scheduling.
I think that's about it.
Well, except for the incident with my eye last week, which I could not properly describe without its own blog post or something. But long story short, H accidentally poked me in the eye with a screwdriver. (It is going to be okay... the corneal abrasion has healed & the blurriness is clearing up a little more each day.)
So, no. I have not given Fragile X Awareness Month the attention it deserves. Not that any awareness should ever be limited to an occasion, but this does deserve the proper attention. I will attempt to make up for that.
I am going to begin by sharing a very personal letter to one of my beloved late grandfathers... a letter which has only previously existed in my mind. But it will explain things quite well.
To be continued tomorrow...
---
Friday, July 5, 2013
my, what big teeth you have.
-->
Well, July happens to be Fragile X Awareness month & I have a recent story which will give some thorough insight as far as the challenges our kids face.
We had a very difficult experience at the dentist earlier in the week, & I was so emotional about it I was barely talking about it.
Hayden has only ever been to one dentist, & we were always very happy with this particular Practice. It wasn't until our last visit (before this one) that we had a bad experience, which was mainly a scheduling mistake.
But the situation this week has helped me to definitively decided to switch. Luckily we have the most incredible Pediatrician possible (seriously) & he already had given us the name of someone else.
So when we received one of those automatic survey emails I decided to take the opportunity to reply:
"To Whom It May Concern,
Our son is 8 years old, & Dr. E is the only dentist that we have ever brought him to.
Several years ago at our very first visit, Dr. E approached us in the waiting area to say hello. He introduced himself to us & to our son, & seemed very caring.
Our child has special needs including sensory processing disorder as well as anxiety. He can also be tactile-defensive particularly when his anxiety is heightened, & probably the most vulnerable area to him would be his mouth. He had speech apraxia through age 5, & continues to exhibit oral motor challenges. As a result of the aforementioned, he also has a strong gag reflex.
He has a hidden disability called Fragile X Syndrome. He does not have autism, even though that is a better-known hidden disability… & even though about 1/3 of people with FX also have autism… our son happens to not be on the spectrum.
His needs should not necessarily be met the same as a child with autism. I would rarely ever suggest that someone should approach treating (or working with) our son in that way. He is very social. He wants to get to know people, he wants to like them, & consequently people often agree he is quite easy to love.
Dr. E was always very understanding & didn’t seem to mind when Hayden cried during a dental visit. He used to say, “it’s OK… when they get upset I can see in their mouth better.”
I remember the first time that our son accidentally threw up because he was crying so much & has such a strong gag reflex… & the reason I remember this, is because they caught it with a little pan, wiped his mouth, & kept going like it was no big deal.
However he did ask us what the “green stuff” was, so I explained it was a spinach omelet from his breakfast. With that, Dr. E said make sure they book you an appointment an hour earlier so you can skip breakfast when he sees me. They wrote “No Food” on our appointment reminder.
For some reason the next appointment had to be rescheduled, & all I remember is that I clearly explained to the person I was speaking with about the importance of our son having the earliest appointment possible & only with Dr. E (consistency can also help curb our son’s anxiety).
Apparently when this person rescheduled our appointment, she made it on a day when Dr. E does not typically take his first patient until 9am. But our appointment was at 8.
Apparently Dr. E showed up for work early that day, or maybe he is usually in the office an hour before, but we didn’t know this. So when he looked at us in surprise, we thought he was just kidding around.
The only thing worse than calming our son down for a dentist appointment, is making him go twice in one day. We were actually asked to leave & to come back at 9. Our son was trying very hard to control himself & quite honestly it broke our hearts.
We were furious over the scheduling error, but pulled ourselves together to get through it so we could come back in an hour & get the appointment over with. We drove up the road to Walmart, mainly because nothing else was open yet, & tried to cheer our son up. But his nervousness barely settled.
Again, Dr. E is the only person our son has ever known to look at his teeth. And we never, ever had a negative experience before that. And ultimately for the most part, the appointment was OK… he was crying but he got through it. Luckily he has good teeth-- that’s what we’ve always been told.
But I still can’t imagine the amount of self-control & bravery it took for my son to go up to Dr. E’s office twice in the same morning.
Waiting is quite possibly one of the single most difficult things for many children with FX. Likewise, prolonging something poses a similar challenge because transitions can be an anxiety trigger.
This is the type of information I share with anyone working with our son.
So imagine our confusion when we arrived at our appointment the other day, & the staff said they wanted to make sure that our son had a few minutes to calm down before Dr. E came in. I looked at the woman behind the desk & said, “I hope not for long? That is definitely going to heighten his anxiety.”
It was later explained to us that this was the note in his file. I have no clue who put that there or why... but I do know as sure as I know my own name that I never, ever would’ve suggested that.
The few minutes we were in the exam room with our son before Dr. E came in-- the supposed “deliberate” wait time-- basically pushed our child to the limit. Distraction techniques often work wonders with him, & I tried explaining this to Dr. E. I suggested he talk about something else or tell my son a story— ANYTHING besides narrating what he was doing to his mouth!
Dr. E responded with, “I was never really good at that.” But he tried, for a few seconds, to tell a make-believe version of the Three Bears. For a moment there I appreciated the effort, but by that point it was too late to help our son regulate his emotions.
It was becoming increasingly tougher to hold our son still, & his cry was becoming that much louder. This time when he started to choke from his sobbing there was no tray to catch anything, & our poor kid basically swallowed what was starting to come up.
With that, Dr. E literally stood up & said, “I am not going to torture him & just have him throw up all over my floor. I can’t do this.” And then he left. He left us in the room with our son pinned down in the exam chair by both his parents.
Our son’s name is Hayden. He likes to please people. He likes to know that they’re proud of him… his family, his teachers, & yes, even his doctors. We have certainly found some gems to work with him & care for him, & for this we are inexplicably grateful. And we hold onto the good ones— the right ones— for dear life. We let them know just how much they’re appreciated.
I think Dr. E has a good heart & he means well, & I think there’s a reason he has such a successful practice. And I am glad for him that he has a loyal patient base.
But the way we were treated these last two visits— especially this most recent one when he actually stood up & left the exam room— is inexcusable.
Best of luck to you, personally & professionally."
---
We had a very difficult experience at the dentist earlier in the week, & I was so emotional about it I was barely talking about it.
Hayden has only ever been to one dentist, & we were always very happy with this particular Practice. It wasn't until our last visit (before this one) that we had a bad experience, which was mainly a scheduling mistake.
But the situation this week has helped me to definitively decided to switch. Luckily we have the most incredible Pediatrician possible (seriously) & he already had given us the name of someone else.
So when we received one of those automatic survey emails I decided to take the opportunity to reply:
"To Whom It May Concern,
Our son is 8 years old, & Dr. E is the only dentist that we have ever brought him to.
Several years ago at our very first visit, Dr. E approached us in the waiting area to say hello. He introduced himself to us & to our son, & seemed very caring.
Our child has special needs including sensory processing disorder as well as anxiety. He can also be tactile-defensive particularly when his anxiety is heightened, & probably the most vulnerable area to him would be his mouth. He had speech apraxia through age 5, & continues to exhibit oral motor challenges. As a result of the aforementioned, he also has a strong gag reflex.
He has a hidden disability called Fragile X Syndrome. He does not have autism, even though that is a better-known hidden disability… & even though about 1/3 of people with FX also have autism… our son happens to not be on the spectrum.
His needs should not necessarily be met the same as a child with autism. I would rarely ever suggest that someone should approach treating (or working with) our son in that way. He is very social. He wants to get to know people, he wants to like them, & consequently people often agree he is quite easy to love.
Dr. E was always very understanding & didn’t seem to mind when Hayden cried during a dental visit. He used to say, “it’s OK… when they get upset I can see in their mouth better.”
I remember the first time that our son accidentally threw up because he was crying so much & has such a strong gag reflex… & the reason I remember this, is because they caught it with a little pan, wiped his mouth, & kept going like it was no big deal.
However he did ask us what the “green stuff” was, so I explained it was a spinach omelet from his breakfast. With that, Dr. E said make sure they book you an appointment an hour earlier so you can skip breakfast when he sees me. They wrote “No Food” on our appointment reminder.
For some reason the next appointment had to be rescheduled, & all I remember is that I clearly explained to the person I was speaking with about the importance of our son having the earliest appointment possible & only with Dr. E (consistency can also help curb our son’s anxiety).
Apparently when this person rescheduled our appointment, she made it on a day when Dr. E does not typically take his first patient until 9am. But our appointment was at 8.
Apparently Dr. E showed up for work early that day, or maybe he is usually in the office an hour before, but we didn’t know this. So when he looked at us in surprise, we thought he was just kidding around.
The only thing worse than calming our son down for a dentist appointment, is making him go twice in one day. We were actually asked to leave & to come back at 9. Our son was trying very hard to control himself & quite honestly it broke our hearts.
We were furious over the scheduling error, but pulled ourselves together to get through it so we could come back in an hour & get the appointment over with. We drove up the road to Walmart, mainly because nothing else was open yet, & tried to cheer our son up. But his nervousness barely settled.
Again, Dr. E is the only person our son has ever known to look at his teeth. And we never, ever had a negative experience before that. And ultimately for the most part, the appointment was OK… he was crying but he got through it. Luckily he has good teeth-- that’s what we’ve always been told.
But I still can’t imagine the amount of self-control & bravery it took for my son to go up to Dr. E’s office twice in the same morning.
Waiting is quite possibly one of the single most difficult things for many children with FX. Likewise, prolonging something poses a similar challenge because transitions can be an anxiety trigger.
This is the type of information I share with anyone working with our son.
So imagine our confusion when we arrived at our appointment the other day, & the staff said they wanted to make sure that our son had a few minutes to calm down before Dr. E came in. I looked at the woman behind the desk & said, “I hope not for long? That is definitely going to heighten his anxiety.”
It was later explained to us that this was the note in his file. I have no clue who put that there or why... but I do know as sure as I know my own name that I never, ever would’ve suggested that.
The few minutes we were in the exam room with our son before Dr. E came in-- the supposed “deliberate” wait time-- basically pushed our child to the limit. Distraction techniques often work wonders with him, & I tried explaining this to Dr. E. I suggested he talk about something else or tell my son a story— ANYTHING besides narrating what he was doing to his mouth!
Dr. E responded with, “I was never really good at that.” But he tried, for a few seconds, to tell a make-believe version of the Three Bears. For a moment there I appreciated the effort, but by that point it was too late to help our son regulate his emotions.
It was becoming increasingly tougher to hold our son still, & his cry was becoming that much louder. This time when he started to choke from his sobbing there was no tray to catch anything, & our poor kid basically swallowed what was starting to come up.
With that, Dr. E literally stood up & said, “I am not going to torture him & just have him throw up all over my floor. I can’t do this.” And then he left. He left us in the room with our son pinned down in the exam chair by both his parents.
Our son’s name is Hayden. He likes to please people. He likes to know that they’re proud of him… his family, his teachers, & yes, even his doctors. We have certainly found some gems to work with him & care for him, & for this we are inexplicably grateful. And we hold onto the good ones— the right ones— for dear life. We let them know just how much they’re appreciated.
I think Dr. E has a good heart & he means well, & I think there’s a reason he has such a successful practice. And I am glad for him that he has a loyal patient base.
But the way we were treated these last two visits— especially this most recent one when he actually stood up & left the exam room— is inexcusable.
Best of luck to you, personally & professionally."
---
Saturday, June 29, 2013
july awareneXs!
Our NFXF Virtual 5k shirt & race bib have arrived!
Here is our fundraising page!
(part of Team New Jersey!)
Here is our fundraising page!
(part of Team New Jersey!)
Did you know... "MORE THAN ONE MILLION INDIVIDUALS IN THE U.S. HAVE, OR ARE AT RISK FOR DEVELOPING, A FRAGILE X - ASSOCIATED DISORDER"
To learn more about this event, please click here :)
--
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