So, to recap, the surgery went wonderfully--it was done very quickly (less
than two hours until the surgeon came out to see us). Due to her GI
distention and how her insides had been pushed around, they wound up
taking out her appendix as well, which I was thrilled about--between the
amount of money that saves us on future hospital bills as well as the
pain and suffering Mara B won't have to deal with, I saw it as a win-win
situation! They emptied out her belly first and the surgeon said they
found some food in it, then he paused and said, "And the nurse said she
thinks she found a...contact lens in it?" We just wonder how many have taken a ride down that long, slow highway!
She took awhile in the recovery room because her temperature was
high and it took awhile for some of her meds to kick in and bring it
down. Her room was also apparently being cleaned for fifteen hours (ha ha..it was beautifully clean and sterile upon arrival, so I mostly jest about that...we were just itching to get in there). She has a NG tube in, (a tube in her nose that goes into her
stomach and drains it, since her bowels aren't really working right now
but are still secreting things), which, as you could imagine, bothers
her greatly. She had these little arm restraint things on (nothing
barbaric, more like swimmies that make it so she can't bend her
arm--they have Peanuts characters on them, a nicety that was completely
lost on her!), and she didn't like having her arms restrained, so she
was pretty fussy. They gave her an anti-anxiety IV that calmed her down
considerably. She was doing great, all tucked away in her hospital
room. I left her with Brian and ducked across to the next building to
my obstetrician's appointment--baby boy is sounding good and I got a flu
shot--I was really multi-tasking at Texas Children's Hospital
yesterday!
I took last night's shift. It was a long night. Long story short,
her meds keep her from being in pain but they don't seem to knock her
out, sleep-wise. That, and her arms being in restraints, the tube in
her nose, all of the other IVs, sensors, and wires in her, and she just
couldn't get comfortable. She screamed for awhile (the nurses couldn't
believe she wasn't falling asleep...normally, I would have been prouder
of her strength, but at that point, I was cursing her apparently high
tolerance for meds or whatever!) She wound up ripping out the NG tube,
which was a production...they had to put another one in her other
nostril (I can live the rest of my life without having to see that scene
again), then they had to wait for an Xray machine to come from surgery
to take Xrays to make sure it was in correctly, then they had to wait
for the Xrays to be read to connect it to the machine that actually
drained it...yadda yadda yadda...all the while, my superwoman was up, screaming and
furious. Some of the looks she gave were priceless.
In the wee small
hours of the morning (which was about three glorious hours after she had
finally fallen asleep), one nurse came in to check her vitals and woke
her up (I think she flipped her onto her back, wretched woman!)...so she
was up from about 4 am on...and wound up messing with the NG tube
again, this time disconnecting it from the tubing that runs to the
machine that collects its contents. I will spare you the gory details
of that one, but I was holding her when it happened and didn't realize
what it was for a few minutes. I'm just glad I wasn't terribly attached
to that outfit, as it wound up in the trash. Then, around 5 or so, I
looked over to see her PULLING HERSELF UP on the side of the crib,
looking for me!!! Now, when I only had my appendix removed, (I say
"only" because my guts hadn't been fooled around with and it was all
done laproscopically, so I didn't have the big scar she does), I could
barely turn slightly to one side of the bed....and here this one was,
pulling herself up, screaming at me like, "Hey! Where are you! What are
you doing?!" The nurse couldn't believe it--he told us the little boy
in the room next to us, who had also spent the night screaming, had also
had his appendix out and he couldn't believe how much Mara was moving
about. Anyway, that was about when I called Brian and told him to get
up to the hospital ASAP to take over. All I can say, is thank goodness for all of the songs, chants, and shanties that my years at Camp Bernadette provided me with--they were used throughout the night to try to lull my girl to sleep or to settle her down.
We're now waiting patiently (or not so patiently) for the NG
tube to be removed--she may be feeling more pain from her scar at that
point, but at least the tube won't be bothering her, which will make it easier to hold
her, and the pain meds will help with the other pain. Also, when the
tube is removed they are going to slowly start to feed her, which will
also help. They're waiting for her to either pass gas or the tube to be
clear. Fingers crossed. Otherwise, the surgeon and his assistants
came in to see her and said everything looks great, so this will all
just take some time. Either way, surprising no one, this little girl is
a trooper. I am happy to report that she was much calmer and happier today. She is a fireball, so I felt the song lyrics were the only appropriate title for this post (amended slightly to account for her petite stature)...this child continues to amaze people...I am hoping it will next come in the form of sleeping for an amazing amount of time!
Aidan's been doing well with his Gigi--an afternoon at the zoo yesterday was followed by a trip to the ice cream shop and a number of hours on the ipad. He rocks--he's seeing Santa today at school and will be asking for another car transporter for his small cars...always thinking, that one!
Thank you all for all of the calls, emails, texts, food, good thoughts, prayers, and offers to help. We appreciate them all! Will keep you posted!
(No pics this post...girlfriend is looking rather feral and I will wait until she has been fully restored to her usual diva status--after seeing her fury last night, I don't want that directed at me when she's a teen and looking back over this blog, appalled at the pictures I posted of her!)
Tuesday, December 4, 2012
Saturday, December 1, 2012
The Latest on My Greatest...
So, Mara B has been having GI issues for months and months now. To make a long story short, the general narrative arc since last year has been thus: vomit, abdominal distention/pain/constipation,
doctor/specialist appointment, test, blood draw, diagnosis (or not), procedure, new
meds. Repeat with frustrating frequency. After positively identifying her as having a milk allergy, reflux, and gastroparesis (fancy name for slow emptying of the stomach), the underlying condition was finally diagnosed a few weeks ago. She has a partial blockage/narrowing of a part of her intestine called the duodenum, which is next to her stomach. Her official diagnosis is duodenal stenosis (or a web, we won't be quite sure which until they get all up in there and see it up close and personally). It blocks solids from making their way through her intestines (they just come back up, oftentimes undigested) and this has hindered her growth, both physically and developmentally. She's been off solids for a few weeks now (straight up purees and back on soy formula to pack on pounds...Girlfriend has been furious with us...we snuck her some turkey on Thanksgiving), and we've already seen vast improvements--she's trying to crawl, she's pulling up on things, gaining weight, her teeth and hair are growing more quickly (I swear, you can notice it!), and she's starting to speak more (we officially have two words, "No" and "stop." These should surprise no one who has met my daughter.)
We went to the surgeon's on Friday morning and she was given the green light for surgery on Monday. I never thought I'd be looking forward to my child having surgery, but I anticipate that most of her other issues will either be partially or completely alleviated after it is complete and she will continue to gain weight and improve her movement and speech. The surgery itself is officially called "enteroenterostomy anastomosis of intestine" and takes about three hours. The surgeon (who is professional, experienced, and very sweet--AND punctual AND he listened to me, really listened to me when I presented him with my ideas) said that the prep work takes awhile, compared to the actual surgery. She'll be in the hospital for the rest of the week, with various tubes and IVs stuck in her (gross) but he said we should see a pretty rapid recovery after those first few days. We're hoping solid foods for Christmas, otherwise we'll have to eat after she goes to sleep! The reason for the hospital stay is to ensure that there is no infection and that she heals properly. The procedure can be done laproscopically, but he said he thinks he can do a better job by making an incision. Just as well, as this girl is already a crazy flirt so I'm going to try my best to keep her out of bikinis and a little abdominal scar should help with that. She is in good hands and she is a trooper, so we're just anxious to have this over and done with!
Over the last nine or so months (which is half of her life at this point), my diva has been subjected to the following:
Visits to the allergist, gastroenterologist, ENT, audiologist, and pediatric surgeon. A couple of trips to the ER (luckily, for nothing serious). Stick tests and nasal swabs for allergins, about eight blood draws (and we're talking 2-4 vials of blood, people), an abdominal ultrasound, a gastric emptying MRI study (which involved drinking barium-laced milk and laying, strapped in, on a little bed for NINETY minutes while they took a picture of her stomach every minute--she was amazing), a fluroscopic X-ray series (this took place over the course of six hours and also involved drinking radioactive milk and getting pics taken every 30 minutes to an hour or so), an endoscopic biopsy (which involved sedation), tubes surgery, and a series of hearing tests. In between all of this, she continued to have semi-regular trips to the opthamologist and 2-3 hours of therapy twice a week (on top of going to school and airing her grievances on a daily basis, making sure we all know who's boss).
I want to make people aware of all that not so that they pity her or us (or to justify my many absences from work! :) ), but so that you can understand that I really, truly mean it when I say how proud I am of my daughter. She is a tiny little thing, but she is one tough cookie. She yells and screams when you'd expect her to, but for the most part, she takes it all in stride. I would not be as good about all of the poking, prodding, sticking, and testing she's had to go through. I promised her (and myself, while cleaning up another set of vomit-studded sheets) that I would find out what was wrong and fix her and come Monday, we're going to do just that!! I will be posting updates and am very excited to let you all know what my amazing little mama is doing!
As for my rascal boy, well, he is still his sister's biggest supporter. He grandly announced one evening that Mara B is President--according to him, more people liked her ideas than "McRomney's," so "she's the number one baby and no baby is close to her". He cheers her on as she tries to crawl, yells for me to come see if she's doing something new, reads books to her, and he always, always, finds a toy to let her play with. He is incredible. There is a sweetness and empathy to him that is innate and I know he's going to wonder where "his baby" is next week, but I've already been telling him we get to go visit her and bring presents to her room in the hospital.
He is three, and a boy, so there is a fair amount of that coming out from time to time...like when I found her crying in his room, an upturned laundry basket holding her captive, or when she got a nice bruise on her eye because he lifted her onto his bed because, according to him, she "really, really wanted to snuggle"...except she launched herself off the bed moments later. He can also recognize when she's going to throw up (which is uber-helpful on rides home from school) and during one of her hearing tests when we were in a booth and he was outside, he basically ran down her medical history to the woman performing the test, who was roaring laughing when we exited (she also congratulated me on my pregnancy and said she was sorry to hear that it made me feel sick, but how nice that the baby was coming right near my birthday! I laughed and told her I was glad we didn't have any big family secrets, or else 'ole brown eyes would have spilled them!) Keep in mind, this child has been to a good number of his sister's medical appointments, blood draws, and therapy sessions and nine times out of ten is really wonderfully behaved throughout. He is amazing...and very protective. There's a particular gent at the TCH blood lab who has been the recipient of my son's ire more than once for "stickin' my baby!"
Oh, and lest we forget:
He raps.
If you listen carefully, you can hear a combination of two of his favorite musical influences, the Beastie Boys and the opening song of "The Lion King" (because yes, these lyrics are being spit, very loosely, to that melody):
We went down to Galveston today...we figured Mara B's not going to be out and about for a week, so best to get some fresh, salty air in her face and lungs (Girlfriend caught RSV a few weeks ago :( )while we can! We ate fried oysters, shrimp, crab balls, and hush puppies, searched for sea treasures, got sandy and wet, and three out of the four of us slept on the ride home! A day full of adventures, big and small! The diva was NOT happy about missing out on our seafood feast, so we promised her a return trip and all the fried oysters she can eat once she's back on solids!
Thanks to all of you who have been asking me about and following up on the amazing adventures of Mara's intestinal track! Will let you all know how she's doing! (And an early thanks to our Gigi and Grandma, who will once again be staying with us, helping out during the week--we couldn't do it without you!! XOXOXOXOOXOX)
We went to the surgeon's on Friday morning and she was given the green light for surgery on Monday. I never thought I'd be looking forward to my child having surgery, but I anticipate that most of her other issues will either be partially or completely alleviated after it is complete and she will continue to gain weight and improve her movement and speech. The surgery itself is officially called "enteroenterostomy anastomosis of intestine" and takes about three hours. The surgeon (who is professional, experienced, and very sweet--AND punctual AND he listened to me, really listened to me when I presented him with my ideas) said that the prep work takes awhile, compared to the actual surgery. She'll be in the hospital for the rest of the week, with various tubes and IVs stuck in her (gross) but he said we should see a pretty rapid recovery after those first few days. We're hoping solid foods for Christmas, otherwise we'll have to eat after she goes to sleep! The reason for the hospital stay is to ensure that there is no infection and that she heals properly. The procedure can be done laproscopically, but he said he thinks he can do a better job by making an incision. Just as well, as this girl is already a crazy flirt so I'm going to try my best to keep her out of bikinis and a little abdominal scar should help with that. She is in good hands and she is a trooper, so we're just anxious to have this over and done with!
Over the last nine or so months (which is half of her life at this point), my diva has been subjected to the following:
Visits to the allergist, gastroenterologist, ENT, audiologist, and pediatric surgeon. A couple of trips to the ER (luckily, for nothing serious). Stick tests and nasal swabs for allergins, about eight blood draws (and we're talking 2-4 vials of blood, people), an abdominal ultrasound, a gastric emptying MRI study (which involved drinking barium-laced milk and laying, strapped in, on a little bed for NINETY minutes while they took a picture of her stomach every minute--she was amazing), a fluroscopic X-ray series (this took place over the course of six hours and also involved drinking radioactive milk and getting pics taken every 30 minutes to an hour or so), an endoscopic biopsy (which involved sedation), tubes surgery, and a series of hearing tests. In between all of this, she continued to have semi-regular trips to the opthamologist and 2-3 hours of therapy twice a week (on top of going to school and airing her grievances on a daily basis, making sure we all know who's boss).
I want to make people aware of all that not so that they pity her or us (or to justify my many absences from work! :) ), but so that you can understand that I really, truly mean it when I say how proud I am of my daughter. She is a tiny little thing, but she is one tough cookie. She yells and screams when you'd expect her to, but for the most part, she takes it all in stride. I would not be as good about all of the poking, prodding, sticking, and testing she's had to go through. I promised her (and myself, while cleaning up another set of vomit-studded sheets) that I would find out what was wrong and fix her and come Monday, we're going to do just that!! I will be posting updates and am very excited to let you all know what my amazing little mama is doing!
 | |||||
| On her 18-month birthday, I heard her laughing and turned around to see Aidan carefully placing this flower in her pontytail. I snapped a pic as quickly as I could. Too much cuteness to fully capture, I suppose. |
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| On our way to the arboretum...bet you thought I was kidding about packing that Tickle Monster glove. You should see what else is in that backpack! |
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| My nature guide, pointing out fishies. |
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| Treasures are everywhere! |
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| Checking out the "toitles" aka turtles (p.s. Note the "explorer's vest" he picked out to wear--Pop-Pop's boy, to be sure!) |
He is three, and a boy, so there is a fair amount of that coming out from time to time...like when I found her crying in his room, an upturned laundry basket holding her captive, or when she got a nice bruise on her eye because he lifted her onto his bed because, according to him, she "really, really wanted to snuggle"...except she launched herself off the bed moments later. He can also recognize when she's going to throw up (which is uber-helpful on rides home from school) and during one of her hearing tests when we were in a booth and he was outside, he basically ran down her medical history to the woman performing the test, who was roaring laughing when we exited (she also congratulated me on my pregnancy and said she was sorry to hear that it made me feel sick, but how nice that the baby was coming right near my birthday! I laughed and told her I was glad we didn't have any big family secrets, or else 'ole brown eyes would have spilled them!) Keep in mind, this child has been to a good number of his sister's medical appointments, blood draws, and therapy sessions and nine times out of ten is really wonderfully behaved throughout. He is amazing...and very protective. There's a particular gent at the TCH blood lab who has been the recipient of my son's ire more than once for "stickin' my baby!"
 | |||
| Sibling derby |
Oh, and lest we forget:
He raps.
If you listen carefully, you can hear a combination of two of his favorite musical influences, the Beastie Boys and the opening song of "The Lion King" (because yes, these lyrics are being spit, very loosely, to that melody):
We went down to Galveston today...we figured Mara B's not going to be out and about for a week, so best to get some fresh, salty air in her face and lungs (Girlfriend caught RSV a few weeks ago :( )while we can! We ate fried oysters, shrimp, crab balls, and hush puppies, searched for sea treasures, got sandy and wet, and three out of the four of us slept on the ride home! A day full of adventures, big and small! The diva was NOT happy about missing out on our seafood feast, so we promised her a return trip and all the fried oysters she can eat once she's back on solids!
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| My girl...she loves bling and cars! |
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| My boys, searchin' for sea treasures! |
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| L-U-V |
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| You really can't help but smooch this one! (Both Mara AND Brian!) |
Friday, October 19, 2012
Thursday, October 4, 2012
Sibling Rivalry? Nah, we've got Sibling Therapy!
October is Down Syndrome Awareness Month! Figured I'd use it as a basis to share my favorite new pics of my dolls and do my semi-annual blog update.
My pediatrician said on day one that Aidan was going to be Mara's most important therapist--and deemed him "highly stimulating" after watching him rascal around. Aidan continually surpasses my expectations of how amazing an older brother he can be. He always keeps his temper when dealing with her, even if he is in the midst of throwing a tantrum or she's gone all Godzilla on one of his intricate car and truck set ups (aka "construction sites"). He makes sure she has a toy to play with when they are both tearing around the house, and he loves to tickle her and make her laugh. If she starts crying and he's nearby, he stops what he's doing and runs over to her to sing "her" song, "You Are My Sunshine" (he has amended the lyrics a bit to make it more Aidan-centric (ie., "I make you happy when skies are blue..you'll never know how much you love me..." etc.--cracks me up!) Car rides to and from school are a hoot--they crack each other up over songs, Bronx cheers, and funny noises (aka bodily functions; my son is three going on junior-high school age when it comes to "pooting" noises and jokes--Mara B thinks it is funny until she gets a whiff of it!)
Recently, he has started "reading" books to her--the storylines veer a bit from the original and they often include quotes from recent lectures he's received, so it's pretty entertaining to watch (who knew so many simple children's books are actually cautionary tales about making good decisions and not pooping in your pants in a corner in the backyard? (Two big, common Aidan lectures)).
The other night, while playing in the kitchen while I made dinner, Aidan announced he was going to "help Mara do therapy." He took one of her little Nook mouth brush-thingies and went after her! Mara B was NOT happy to begin with--she has teeth growing in, an ear infection of some sort, and was having some stomach issues, so she was doing everything in her power to get the deplorable therapist out of her business. As for Himself, he was thrusting the Nook in her face, aiming for the mouth, hollering, "Mara B--you NEED to DO FERAPY!! IT'S GOOD FOR YOU!!!" (For the record, she is never yelled at by any of her other therapists or parents while working on therapy--it's more like gentle play slash disguising the fact that we're working her like a racehorse!)
**Disclaimer for their grandparents' sake: while I was documenting this, laughing hysterically, I did make sure he wasn't gagging or choking her with the Nook. Also, he had by this point inexplicably stripped off his shorts while screaming, "ROCK AND ROLL!" and decided to put his underpants on backwards and inside out...for real...I couldn't make this stuff up if I tried, people.
Open up, sister!
She fends him off forcefully!
Dodging the Nook with speed and agility!
A head twist after he manages to shove it in!
These two crack me up--I love it! Also, in case you missed the announcement, there will soon be another crazy Winegar kid to add to this joyful chaos! Due April 5th, which means I could feasibly have a St. Pat's baby if this one decides to keep the tradition of early entrances begun by its siblings, OR I could have a birthday twin! Mama thinks it's a boy but we have to wait a few weeks to find out. In the meantime, check out this cutie! This kid has no idea what's in store once it makes its appearance here!
My pediatrician said on day one that Aidan was going to be Mara's most important therapist--and deemed him "highly stimulating" after watching him rascal around. Aidan continually surpasses my expectations of how amazing an older brother he can be. He always keeps his temper when dealing with her, even if he is in the midst of throwing a tantrum or she's gone all Godzilla on one of his intricate car and truck set ups (aka "construction sites"). He makes sure she has a toy to play with when they are both tearing around the house, and he loves to tickle her and make her laugh. If she starts crying and he's nearby, he stops what he's doing and runs over to her to sing "her" song, "You Are My Sunshine" (he has amended the lyrics a bit to make it more Aidan-centric (ie., "I make you happy when skies are blue..you'll never know how much you love me..." etc.--cracks me up!) Car rides to and from school are a hoot--they crack each other up over songs, Bronx cheers, and funny noises (aka bodily functions; my son is three going on junior-high school age when it comes to "pooting" noises and jokes--Mara B thinks it is funny until she gets a whiff of it!)
Recently, he has started "reading" books to her--the storylines veer a bit from the original and they often include quotes from recent lectures he's received, so it's pretty entertaining to watch (who knew so many simple children's books are actually cautionary tales about making good decisions and not pooping in your pants in a corner in the backyard? (Two big, common Aidan lectures)).
The other night, while playing in the kitchen while I made dinner, Aidan announced he was going to "help Mara do therapy." He took one of her little Nook mouth brush-thingies and went after her! Mara B was NOT happy to begin with--she has teeth growing in, an ear infection of some sort, and was having some stomach issues, so she was doing everything in her power to get the deplorable therapist out of her business. As for Himself, he was thrusting the Nook in her face, aiming for the mouth, hollering, "Mara B--you NEED to DO FERAPY!! IT'S GOOD FOR YOU!!!" (For the record, she is never yelled at by any of her other therapists or parents while working on therapy--it's more like gentle play slash disguising the fact that we're working her like a racehorse!)
**Disclaimer for their grandparents' sake: while I was documenting this, laughing hysterically, I did make sure he wasn't gagging or choking her with the Nook. Also, he had by this point inexplicably stripped off his shorts while screaming, "ROCK AND ROLL!" and decided to put his underpants on backwards and inside out...for real...I couldn't make this stuff up if I tried, people.
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| Note: This was not being stuck in her eye! |
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| Girlfriend is fierce! |
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| Looks like she's begrudgingly accepted it... |
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| ...until he turns his back for a second and she goes to pick up the evil torture device! |
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| Having a face-off with the Nook... |
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| and tossing it away! |
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| Whew, that was a close call! |
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| "This is a good one, Mom!" he says |
These two crack me up--I love it! Also, in case you missed the announcement, there will soon be another crazy Winegar kid to add to this joyful chaos! Due April 5th, which means I could feasibly have a St. Pat's baby if this one decides to keep the tradition of early entrances begun by its siblings, OR I could have a birthday twin! Mama thinks it's a boy but we have to wait a few weeks to find out. In the meantime, check out this cutie! This kid has no idea what's in store once it makes its appearance here!
Friday, November 18, 2011
TAKE ACTION--an important post if you live in TEXAS!
I figured this was the best way to spread the word to our friends and family in Texas who have at least a passing interest in anything that might be related to the DS community.
I received the following information from the Down Syndrome Association of Houston on proposed rate cuts for certain services and supplies provided by Home Health Agencies and Outpatient Rehabilitative Facilities provided by Medicaid.
The programs that are threatened with having funding cut are not ones that we currently use for Mara, but are ones we may need one day when she is no longer covered under our insurance. We've signed her up for the wait lists of a number of these Medicaid programs already, as the wait time on those lists ranges from approximately seven to twelve years. These programs may provide her with anything from housing in a residential/assisted living facility to covering various medical services and supplies, such as her glasses, orthopedics, speech, occupational, and physical therapies. I know there are so many people out there who rely on these programs to maintain their standard of living right now and I am frightened to think of what this would mean for us (and, particularly, Mara) if we were at that stage. I also think about the people being served by these programs now who didn't have as many opportunities or access to interventions that Mara has had, due to either our socio-economic status or the fact that she was born in 2011 and not twenty or even ten years earlier. I think of how these programs provide people with so many crucial and necessary services that enhance their lives. If you live in Texas and have the time and desire to send an email, please do so before Monday. I'm happy to forward along the missive I just sent out if you'd like me to send it to you. You can tinker with it to personalize it a bit and then send it out.
Thanks,
Catie
The Health and Human Services Commission (HHSC) is conducting rate hearings on November 21st regarding Proposed Payment Rates to be effective January 1, 2012. The Proposed Payment Rates slash rates for multiple, critical Medicaid services and supplies, including:
WHAT DOES IT MEAN FOR INDIVIDUALS/FAMILIES?
The proposed payment rates are significantly lower from current rates and there will be devastating outcomes for thousands of Texans. Consider the following:
· SERVICES PROVIDED BY HOME HEALTH AGENCIES & OUTPATIENT REHABILITATIVE FACILITIES—Payment rates for services provided by these entities are also being slashed (i.e. colleagues have calculated a 35% rate cut to Outpatient Rehabilitation Facilities and up to a 45% rate cut to speech therapy). The affected services include: therapies (speech, occupational, physical), psychology, dental, podiatry, durable medical equipment and many more. While the services and supplies will continue to be in the Medicaid “service array,” the severity of the rate cuts will translate into fewer providers being available and willing to provide the services and supplies to children and adults in Medicaid. Without the availability of these critical community based Medicaid services and supplies, thousands will be left with no other option that to seek care in emergency rooms and, even worse, institutions.
WHAT CAN YOU DO?
It is critical that you express your opposition to the proposed payment rates Monday (11/21). In addition to stating your opposition to the rate cuts, it is even more important that you share your story in order to describe to HHSC how the draconian rate cuts will negatively affect your life or the life of your loved one(s). Remember to include the following items in your letter:
· State your opposition to the proposed rate cuts for critical Medicaid services and supplies
SEND YOUR LETTERS TO: ESTHER.BROWN@HHSC.STATE.TX.US
WHY IS THIS HAPPENING?
The Health and Human Services Commission (HHSC) is proposing the new, and much lower, payment rates in accordance with certain legislative mandates imposed via the state budget approved by Texas Legislators during the most recent legislative session (82nd Texas Legislature, May-June 2011). In the state budget, HHSC is directed via special instructions knows as “Riders,” to do the following:
I received the following information from the Down Syndrome Association of Houston on proposed rate cuts for certain services and supplies provided by Home Health Agencies and Outpatient Rehabilitative Facilities provided by Medicaid.
The programs that are threatened with having funding cut are not ones that we currently use for Mara, but are ones we may need one day when she is no longer covered under our insurance. We've signed her up for the wait lists of a number of these Medicaid programs already, as the wait time on those lists ranges from approximately seven to twelve years. These programs may provide her with anything from housing in a residential/assisted living facility to covering various medical services and supplies, such as her glasses, orthopedics, speech, occupational, and physical therapies. I know there are so many people out there who rely on these programs to maintain their standard of living right now and I am frightened to think of what this would mean for us (and, particularly, Mara) if we were at that stage. I also think about the people being served by these programs now who didn't have as many opportunities or access to interventions that Mara has had, due to either our socio-economic status or the fact that she was born in 2011 and not twenty or even ten years earlier. I think of how these programs provide people with so many crucial and necessary services that enhance their lives. If you live in Texas and have the time and desire to send an email, please do so before Monday. I'm happy to forward along the missive I just sent out if you'd like me to send it to you. You can tinker with it to personalize it a bit and then send it out.
Thanks,
Catie
Oppose Proposed Rate Cuts!
Texas Medicaid Rate Cuts Will Have Devastating Affect on Persons with Disabilities
Rate Hearings are Scheduled for MONDAY (November 21st)
Submit Written Comments —Details Provided Below
WHAT?The Health and Human Services Commission (HHSC) is conducting rate hearings on November 21st regarding Proposed Payment Rates to be effective January 1, 2012. The Proposed Payment Rates slash rates for multiple, critical Medicaid services and supplies, including:
· therapies (speech, physical, occupational) provided by Home Health Agencies and Outpatient Rehabilitative Facilities.
To see the complete list of Medicaid services and supplies to be affected, go to: http://www.hhsc.state.tx.WHAT DOES IT MEAN FOR INDIVIDUALS/FAMILIES?
The proposed payment rates are significantly lower from current rates and there will be devastating outcomes for thousands of Texans. Consider the following:
· SERVICES PROVIDED BY HOME HEALTH AGENCIES & OUTPATIENT REHABILITATIVE FACILITIES—Payment rates for services provided by these entities are also being slashed (i.e. colleagues have calculated a 35% rate cut to Outpatient Rehabilitation Facilities and up to a 45% rate cut to speech therapy). The affected services include: therapies (speech, occupational, physical), psychology, dental, podiatry, durable medical equipment and many more. While the services and supplies will continue to be in the Medicaid “service array,” the severity of the rate cuts will translate into fewer providers being available and willing to provide the services and supplies to children and adults in Medicaid. Without the availability of these critical community based Medicaid services and supplies, thousands will be left with no other option that to seek care in emergency rooms and, even worse, institutions.
WHAT CAN YOU DO?
It is critical that you express your opposition to the proposed payment rates Monday (11/21). In addition to stating your opposition to the rate cuts, it is even more important that you share your story in order to describe to HHSC how the draconian rate cuts will negatively affect your life or the life of your loved one(s). Remember to include the following items in your letter:
· State your opposition to the proposed rate cuts for critical Medicaid services and supplies
· Describe the services and supplies your receive and that will be affected by the rate cuts
· Describe what would happen if the rate cuts go into effect on January 1st:
o Will your provider be unwilling/unable to see you or provide the services and supplies you need?
o How
will your health, safety and welfare in the community be negatively
affected? (Will you lose the skills you’ve acquired so far? )
o Will
you have to seek care from more expensive setting, such as an emergency
room, nursing home or other state institution (State Supported Living
Centers)?
SEND YOUR LETTERS TO: ESTHER.BROWN@HHSC.STATE.TX.US
Letters Regarding Rate Cuts to
SERVICES PROVIDED BY HOME HEALTH AGENCIES & OUTPATIENT
REHABILITATIVE FACILITIES MUST BE SUBMITTED TO HHSC BY MONDAY, NOVEMBER
21ST.
WHY IS THIS HAPPENING?
The Health and Human Services Commission (HHSC) is proposing the new, and much lower, payment rates in accordance with certain legislative mandates imposed via the state budget approved by Texas Legislators during the most recent legislative session (82nd Texas Legislature, May-June 2011). In the state budget, HHSC is directed via special instructions knows as “Riders,” to do the following:
· Implement
a budget cut of $88.3 million (state funds) in Durable Medical
Equipment. This includes rate cuts and additional cost containment
initiatives to durable medical equipment, and selective contracting for
incontinence supplies.
· Implement
rate cuts in the new biennium (2012-13) that are in addition to the
rate cuts implemented in fiscal year 2011. These rate cuts include a
10.5% rate cut to Medicaid durable medical equipment, as well as rate
cuts to multiple Medicaid program provided under the auspices of HHSC,
the Department of State Health Services and Department of Aging and
Disability Services.
· More
importantly, the health and human services agencies are directed to
implement certain Medicaid Cost Containment Initiatives totaling $705
million in state funds or $1.7 billion in state and federal funds.
These initiatives have led to reductions in service plans for
individuals in certain Medicaid Waiver Programs and include “Medicare
Equilization.” As it has been explained to us, Medicare Equilization
occurs annually and consists of lowering or increasing Medicaid rates to
match, as closely as possible, Medicare rates. It is important to note
that equalization efforts often result in the reduction of Medicaid
rates.
Thank you for taking action!
If you have any questions feel free to contact Tamara Ishee (governmentaffairs@dsah.org).
Sunday, October 30, 2011
So cute, it's scary!!...and a 31 for 21 post!
Some pics from the Zebra Zone Halloween parade and Fall Festival, starring Miss M and Mr. A as Wonder Woman and a fireman!!
We missed the DS Association of Houston's Gathering of Friends today (Aidan took an epic nap and woke up too late), which we were bummed about, so I figured we'd post another link to our Buddy Walk page--almost a month away!!!
The Divine Miss M!
The Divine Miss M!
Tuesday, October 25, 2011
oh my goodness...and a 31 for 21 post
I'm assuming Mr. A learned his new catchphrase at school...
So, I've dropped the ball on my 31 for 21 postings, and the month is almost over. My bad. I just finished reading a book called A Good and Perfect Gift, which is a memoir written by a mom whose daughter has Down syndrome. I was struck by how many of the author's experiences with this whole journey were so similar to mine...many were very different, as we are obviously very different people, but it was both striking and comforting how much of it resonated with me. One passage in particular I liked was this one, which discusses an idea called "responsive parenting,"which I think relates not simply to children with disabilities/special needs, but "average" children as well.
Here's the passage:
"...most parents of kids with disabilities focused on their child's weaknesses. Instead we should try to identify Penny's strengths and help her grow into these strengths. That way she would maintain interest and enjoyment as she played, and we would recognize how capable she really was. Ideally, the process would begin a happy feedback loop, where progress was made not because of fighting to get to the next goal, but because of getting to know our daughter as an individual who could do things in her way, in her time." (Amy Julia Becker)
I hope that I'll be able to keep this in mind with BOTH of my children--I know from my own personal experiences as well as those I've had teaching that kids are more willing to learn, able to remember things better, and profit more from something if they are interested in it, involved in it, and receive positive feedback on it. Charts and averages don't give me a real indicator of my children's worth, just as an IQ test doesn't really tell me what they do and don't "know" or how smart they are; the happiness and feeling of self-satisfaction that lights up their eyes is what I hope to gauge their accomplishments by!
As my rascal boy said, oh my goodness.... I love them so! Now off to iron--tomorrow is school picture day!
So, I've dropped the ball on my 31 for 21 postings, and the month is almost over. My bad. I just finished reading a book called A Good and Perfect Gift, which is a memoir written by a mom whose daughter has Down syndrome. I was struck by how many of the author's experiences with this whole journey were so similar to mine...many were very different, as we are obviously very different people, but it was both striking and comforting how much of it resonated with me. One passage in particular I liked was this one, which discusses an idea called "responsive parenting,"which I think relates not simply to children with disabilities/special needs, but "average" children as well.
Here's the passage:
"...most parents of kids with disabilities focused on their child's weaknesses. Instead we should try to identify Penny's strengths and help her grow into these strengths. That way she would maintain interest and enjoyment as she played, and we would recognize how capable she really was. Ideally, the process would begin a happy feedback loop, where progress was made not because of fighting to get to the next goal, but because of getting to know our daughter as an individual who could do things in her way, in her time." (Amy Julia Becker)
I hope that I'll be able to keep this in mind with BOTH of my children--I know from my own personal experiences as well as those I've had teaching that kids are more willing to learn, able to remember things better, and profit more from something if they are interested in it, involved in it, and receive positive feedback on it. Charts and averages don't give me a real indicator of my children's worth, just as an IQ test doesn't really tell me what they do and don't "know" or how smart they are; the happiness and feeling of self-satisfaction that lights up their eyes is what I hope to gauge their accomplishments by!
As my rascal boy said, oh my goodness.... I love them so! Now off to iron--tomorrow is school picture day!
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