Lula has made barrettes all the rage around here and Gracie just couldn't resist.
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| Photo Courtesy Katharine |
POP QUIZ! /
My friend Katharine (since freshman year of High School no less) came over for dinner. She hadn't seen Roan for a while and she wanted to catch up so she asked him a few questions:
The ice cream truck answer is him actually singing the song that the truck plays as it ambles down the street. He's never even had the ice cream but whenever he hears that tune he runs to the window like a puppy.
I think it may be possible that on this very day, at this very moment Roan has hit his peak of absolute cuteness, never to be surpassed before or since.
The ice cream truck answer is him actually singing the song that the truck plays as it ambles down the street. He's never even had the ice cream but whenever he hears that tune he runs to the window like a puppy.
I think it may be possible that on this very day, at this very moment Roan has hit his peak of absolute cuteness, never to be surpassed before or since.
BEYOND THERAPY /
Neighborhood friend and total mom inspiration Eliza Factor is opening an incredible place called Extreme Kids. It's a space for kids with special needs and their families to have fun and be kids. I have mentioned Eliza before because she has been a beacon for me to follow towards finding peace with Lula's condition. I've sung her praises before. Extreme Kids has new digs and we went to check them out on Sunday. It's a fantastic space complete with a ball pit and an incredible therapy swing. While we were there her son Felix graciously let us crash his private session with a very renown OT named Huck Ho, the director of a therapy center in Manhattan called The Smile Center.
Huck is a world of advice and information. I actually have no photos to accompany this blog entry because I was furiously transcribing everything he said into my phone. It was a little overwhelming - he rattled off exercises and techniques, suggested additional tests and assessments and therapists. He told me that Sam and I should start looking at schools for Lula for when she turns 3! Oy. Lula's OT Loreto, who is an incredible therapist as well, joined us to get pointers from Huck. It was on her own time, on a Sunday, with no pay. They discussed techniques, additional therapies, adaptive equipment, everything.
The thing that's so amazing about therapists is that there is never a question of whether or not your child is worth the effort. There is always room for improvement for everyone, no matter what their issues. There are no DNRs in therapy. Some days the only thing that keeps me going is when a therapist says "Lula did awesome with her therapy today". Of course they don't mean "Lula suddenly caught up and is walking", but when she works her hypotonic little tail off the therapists take notice. Waleed, Lulas PT, told Sam last week that we should really buy Lula shoes so we can get her ready to walk and my heart soared at the thought. She can't hold her head up still, but he sees potential where others see nothing but defecits.
We are about to get a new feeding therapist after much wrangling and (as usual) me being a thorn in the side of EI bureaucrats. I hope she is good - the previous FT was great but Lula is still eating almost nothing by mouth. Feeding is the trickiest of all and has been the most fraught for us, but she will be getting FT 4 times a week in addition to her PT 5 times a week and OT 3 times a week. I don't know how we will ever find time to leave the house, but I am not complaining. The more therapy she gets the more chances Lula has to prove the doctors wrong.
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| Lula and Lisa (Bye Lisa we'll miss you!) |
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| Lula and Loreto |
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| Waleed employs an assistant |
DIRT /
Directly on either side of Roan two fantastic playgrounds complete with jungle gyms, slides, and swings designed specifically to both delight and occupy him. Instead he prefers the excavated hole of a former tree stump. Perhaps a country boy at heart?
LIGHT /
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| At the handball courts across the street |
TUB TIME /
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| Photo Courtesy Sam |
INSANE CLOWN POSSE /
Today while waiting at the geneticists office two guys dressed as clowns came spelunking into the waiting room. Lula and I were the only patients in the room but you would have thought they were playing to a full audience.
They were slightly hipster clowns, with pipe-cleaner mustaches attached to their red noses and pockets full of noisy beans, but they were hilarious. Lula herself was in an outfit that Sam described as "Tundra gnome foraging for yak dung to make some Chai". The clowns were clearly inspired and started to yodel and dance in giddy circles.
The nurse said, "I don't know who enjoys them more, the kids or the adults", but I am willing to bet they are really there for the grown-ups. There is nothing better in a place so devoid of uncompromised joy than a dude wearing clown shoes.
Clowns always make me think of the famous "Chuckles the Clown" episode of the Mary Tyler Moore show, where Mary gets a helpless case of the giggles at Chuckle's funeral (he was trampled to death by an elephant while dressed as a peanut). As we have been on the subject of mantras of late, Chuckles words to live by seem all the more appropriate:
"A little song. A little dance. A little seltzer down your pants".
They were slightly hipster clowns, with pipe-cleaner mustaches attached to their red noses and pockets full of noisy beans, but they were hilarious. Lula herself was in an outfit that Sam described as "Tundra gnome foraging for yak dung to make some Chai". The clowns were clearly inspired and started to yodel and dance in giddy circles.
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| Boho Chic |
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| Bozo Chic |
The nurse said, "I don't know who enjoys them more, the kids or the adults", but I am willing to bet they are really there for the grown-ups. There is nothing better in a place so devoid of uncompromised joy than a dude wearing clown shoes.
Clowns always make me think of the famous "Chuckles the Clown" episode of the Mary Tyler Moore show, where Mary gets a helpless case of the giggles at Chuckle's funeral (he was trampled to death by an elephant while dressed as a peanut). As we have been on the subject of mantras of late, Chuckles words to live by seem all the more appropriate:
"A little song. A little dance. A little seltzer down your pants".
NEW DEVELOPMENTS /
We took Lula to the neurologist on Friday. First of all, it was a much better experience than we had last time (see: previous post) No one was arrested, Roan got to hang out in their rather impressive playroom, and we were seen fairly quickly (ie within the hour). We had some results from Lula's stay in the hospital last month; Lula is having something called Infantile Spasms, which are a kind of seizure. She has probably had them all along, but they don't look like typical seizures. She looks startled and thrusts her arms in the air (appropriately called the "Cheerleader") and they last a second or so. We thought she was being startled and the previous neurologist never even suggested an EEG so this was an unexpected diagnosis.
I had this transformative moment when they told me that Lula was having seizures. I thought about how most parents would be completely devastated by this news, how it would totally upend their lives, and for us it was another in an endless stream of small curveballs to be absorbed. I realized how much we are now capable of handling and how normal any process can become with repetition.
It's also the first time that a neurologist has given us some hope. The doctors think that her developmental delays are being exacerbated by the seizures and have started her on a medicine called Topamax. She has been on it for a few days and so far has had no adverse reactions. It will take a couple of weeks to titer her up to her full dosage, and then a while longer to see if it has any overall affect on her development.
She was also sounding congested and wheezy so my mom took her to the pulmonologist, who put her on yet more meds. I know all of these things are helping her but the amount of medications she is on is getting ridiculous. Here is her current med schedule:
6:00am - 2.5 ml each Amoxicillin and Prednisolone
7:30am - 0.7 ml Domperidone
7:30am - 1.25 ml each Atrovent and Albuterol
8:00am - 1/2 teaspoon Miralax + vitamins
9:00am - 1.5 ml Topamax
12:00pm - 3.5 ml Prilosec + 1.25 ml Albuterol
4:30pm - 0.7 ml Domperidone
6:00pm - 2.5 ml each Amoxicillin and Prednisolone
7:30pm - 1.25 ml each Atrovent and Albuterol
8:00pm - 1 teaspoon Miralax
9:00pm - 1.5 ml Topamax
10:30pm - 3.5 ml Prilosec
1:30am - 0.7 ml Domperidone
2:00am - 1 packet Florastor + 0.3 ml fish oil
This seems like an absurd amount of stuff to put into 16.5 pounds of little girl. It's almost a wonder that her little body can tolerate all of it and I have to remind myself that this pharmacy is working some magic on her.
I hope these all help her to be more comfortable, less sick, stronger, and maybe even more capable, but our mantra for Lula remains and always will be this:
Lula is exactly who she is meant to be. Lula is exactly who she is meant to be.
Lula is exactly who she is meant to be.
I had this transformative moment when they told me that Lula was having seizures. I thought about how most parents would be completely devastated by this news, how it would totally upend their lives, and for us it was another in an endless stream of small curveballs to be absorbed. I realized how much we are now capable of handling and how normal any process can become with repetition.
It's also the first time that a neurologist has given us some hope. The doctors think that her developmental delays are being exacerbated by the seizures and have started her on a medicine called Topamax. She has been on it for a few days and so far has had no adverse reactions. It will take a couple of weeks to titer her up to her full dosage, and then a while longer to see if it has any overall affect on her development.
She was also sounding congested and wheezy so my mom took her to the pulmonologist, who put her on yet more meds. I know all of these things are helping her but the amount of medications she is on is getting ridiculous. Here is her current med schedule:
6:00am - 2.5 ml each Amoxicillin and Prednisolone
7:30am - 0.7 ml Domperidone
7:30am - 1.25 ml each Atrovent and Albuterol
8:00am - 1/2 teaspoon Miralax + vitamins
9:00am - 1.5 ml Topamax
12:00pm - 3.5 ml Prilosec + 1.25 ml Albuterol
4:30pm - 0.7 ml Domperidone
6:00pm - 2.5 ml each Amoxicillin and Prednisolone
7:30pm - 1.25 ml each Atrovent and Albuterol
8:00pm - 1 teaspoon Miralax
9:00pm - 1.5 ml Topamax
10:30pm - 3.5 ml Prilosec
1:30am - 0.7 ml Domperidone
2:00am - 1 packet Florastor + 0.3 ml fish oil
This seems like an absurd amount of stuff to put into 16.5 pounds of little girl. It's almost a wonder that her little body can tolerate all of it and I have to remind myself that this pharmacy is working some magic on her.
I hope these all help her to be more comfortable, less sick, stronger, and maybe even more capable, but our mantra for Lula remains and always will be this:
Lula is exactly who she is meant to be. Lula is exactly who she is meant to be.
Lula is exactly who she is meant to be.
A HELPING HAND /
HOW CLEAN IS YOUR HOUSE? /
One of the very best additions to our domestic routine since the kids were born has been our cleaning lady. I always swore up and down that I would clean my own house but since we had the kids Ana has been the only thing preventing this place from descending into a pit of dirty diapers and spit-up.
Roan is utterly besotted with her and follows her around trying to be helpful.
Roan is utterly besotted with her and follows her around trying to be helpful.
KRAFTWERK /
Sam has been crafting some custom made gifts for the kids in the studio.
This is SO sweet but I am terrified. I grew up in a thoroughly sport averse family. My sister was by far the most athletic and she was a swimmer - not exactly a thrill-ride. Sam, however, grew up in the country tearing up through the brush on 4-wheelers and throwing himself down a mountain on skis as soon as he could stand up. I am not sure that I have the constitution to tolerate a daredevil of a kid. Nonetheless, that appears to be what Roan is being groomed for.
Lula got an entirely different kind of present. Lula's Physical Therapist has been really wanting to work with her standing so Sam devised this unit. It's actually quite similar to ones that you can order through EI but it takes 3-4 months to get them. I think this one is far more stylish, too.
It definitely has a slight Spanish Inquisition Rack vibe but I think the friendly animal blanket mitigates this. Actually, my first thought was that with some modifications we could totally dress Lula up as Hannibal Lecter with a straight jacket and a leather mask, but that may be a bit over the top.
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| Tiny wee skateboard |
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| dedicated |
This is SO sweet but I am terrified. I grew up in a thoroughly sport averse family. My sister was by far the most athletic and she was a swimmer - not exactly a thrill-ride. Sam, however, grew up in the country tearing up through the brush on 4-wheelers and throwing himself down a mountain on skis as soon as he could stand up. I am not sure that I have the constitution to tolerate a daredevil of a kid. Nonetheless, that appears to be what Roan is being groomed for.
Lula got an entirely different kind of present. Lula's Physical Therapist has been really wanting to work with her standing so Sam devised this unit. It's actually quite similar to ones that you can order through EI but it takes 3-4 months to get them. I think this one is far more stylish, too.
It definitely has a slight Spanish Inquisition Rack vibe but I think the friendly animal blanket mitigates this. Actually, my first thought was that with some modifications we could totally dress Lula up as Hannibal Lecter with a straight jacket and a leather mask, but that may be a bit over the top.
METHOD ACTING /
Here is Roan's impression of Ralph Kramden and Ed Norton having an argument.
APPLES TO APPLES /
Now that we have had a taste of escape we are desperate to get out of town at any opportunity, so Sam and I took the kids apple picking. Whereas in years past I would have spent too much time researching the picturesqueness of far flung orchards free of crowds, this time I looked quick and close. We found the nearest orchard, which was called Harvest Moon Orchard (formerly Outhouse Orchard. Hmm, I wonder why they changed the name!)
On arrival we were herded through the parking lot like so many cattle, but the fields were open and the trees were bulging with fruit. Roan staggered through the tall grasses and found his lunch on the ground.
We still do not take it for granted that we can leave the city and do things like this so we soaked in the expanse of sky and meandered through the apple and pear trees. There is something undeniably restorative about picking your own apples and we spent far too much time mulling over the quality and breed of apples at different trees all over the orchard.
Adjacent to the orchard was the requisite old timey store that sold cider and donuts and jam. This place was a bit on steroids, what you get for going to a place an hour outside of the city. And, like the Queens farm we went to last week the prepared food, amid hundreds of acres of fresh produce and livestock, was all ultra processed and fried. Lunch was apples and hot dogs, go figure.
There were pears too, but they were being picked by the pros.
We have more apples than we know what to do with, so Sam has been gifting them to anyone who stops by. We might go again anyway, not for the apples but for the trip.
On arrival we were herded through the parking lot like so many cattle, but the fields were open and the trees were bulging with fruit. Roan staggered through the tall grasses and found his lunch on the ground.
We still do not take it for granted that we can leave the city and do things like this so we soaked in the expanse of sky and meandered through the apple and pear trees. There is something undeniably restorative about picking your own apples and we spent far too much time mulling over the quality and breed of apples at different trees all over the orchard.
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| big sky country |
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| Sam favored the small Macintoshs |
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| Lunch |
Adjacent to the orchard was the requisite old timey store that sold cider and donuts and jam. This place was a bit on steroids, what you get for going to a place an hour outside of the city. And, like the Queens farm we went to last week the prepared food, amid hundreds of acres of fresh produce and livestock, was all ultra processed and fried. Lunch was apples and hot dogs, go figure.
There were pears too, but they were being picked by the pros.
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| Lula (and a bit of Sam) |
We have more apples than we know what to do with, so Sam has been gifting them to anyone who stops by. We might go again anyway, not for the apples but for the trip.
MANICURE /
An old video of Roan and my mom courtesy of Sam.
NEW RASPBERRY BANDITS /
My friend Kristy sent me this link. It's a song called Lula by a kids band called New Raspberry Bandits. I think the song is remarkable and suits our Lula perfectly:
http://www.myspace.com/newraspberrybandits/music/songs/lula-55574762
http://www.myspace.com/newraspberrybandits/music/songs/lula-55574762
SWINGSWINGSWING /
Courtesy of Sam
BOOTY SHAKE /
I've had a really tough week, one has reminded me why I thought I wouldn't miss work to stay home with the kids.
I have this on my phone as a little pick-me-up that Sam took at home while being Mr. Mom
I have this on my phone as a little pick-me-up that Sam took at home while being Mr. Mom
CHAIR MASTER /
The OT at Bellevue finally got in a demo model of the chair that she wants to order for Lula. Sam took Lula over to give it a spin.
It's awesome. It's fully customizable and adaptable and will grow with her until she is 5 years old. It needs some help though; no matter how hard they try these medical devices all wind up looking like a cross between cheap Ikea office furniture and the creature from Aliens. It ain't pretty, but I think we can jazz it up. I am imagining custom made covers in cute patterns, grosgrain ribbon, and maybe some christmas lights.
I was a bit skeptical at first that we would need this huge thing but the OT won me over. Then after convincing us that we simply could not live without it we found out the catch; it will take the insurance company about 4 months to process the request. Hopefully this will be Lula's New Years present.
'
It's awesome. It's fully customizable and adaptable and will grow with her until she is 5 years old. It needs some help though; no matter how hard they try these medical devices all wind up looking like a cross between cheap Ikea office furniture and the creature from Aliens. It ain't pretty, but I think we can jazz it up. I am imagining custom made covers in cute patterns, grosgrain ribbon, and maybe some christmas lights.
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| NB: We will NOT be getting this vomitous color of pink. |
I was a bit skeptical at first that we would need this huge thing but the OT won me over. Then after convincing us that we simply could not live without it we found out the catch; it will take the insurance company about 4 months to process the request. Hopefully this will be Lula's New Years present.
'
PUNNET HAT /
BIRTHDAY GRAMPS /
In a pinch, a peach works as well as a cake.
HAPPY BIRTHDAY GRAMPS!
HAPPY BIRTHDAY GRAMPS!