Showing posts with label Adel's Health. Show all posts
Showing posts with label Adel's Health. Show all posts

Saturday, October 29, 2011

Geneticist Visit

 The genetics visit went very well! Adi enjoyed the attention and even coaxed an iPhone from one of the residents. :)

In short, we have noticed that Adi blanks out every so often, and I will need to take her to get an EEG to rule out absence seizures. I will also need to take Adi for an MRI (not excited!) to scout out her brain in general and check for a tumor in specific (definitely not excited!) It might be a tumor causing the seizures, if that's what they are.

I decided to look through videos of Adi over the past year and a half or so and see if I could notice the spacing out episodes. Here's what I got. In most of them I turned the camera off as soon as she started spacing, because I didn't want to get a video of her doing nothing. But in some, I captured it in full.

I posted this video before, but now it's bigger and easier to see. I think I'll be using YouTube for videos till Google starts making big videos for Blogger as well.
Adi, 2.5, is showing off her words and then spaces out at the end.


Adi at 2 years old, trying to put on her brother's slipper over her shoe. :D Same zoning out at the end.


Adi swinging, almost 3 years old.
Zoning out episode, possible absence seizure. It begins at 16 seconds and ends when Adi snaps back at 20 seconds and says Mama.


Zoning out episode from 34-39 seconds in the video. What characterizes these episodes is that when she gets back, she does something active, like calling out for me, or in this case, jump-walking. Almost 3 years old.


Boys ask Adi (almost 2) questions and she repeatedly spaces out and comes back with a jerk.
The first 20 seconds she goes in and out a few times, then joins her brothers' game with gusto.
1:11 - 1:24 is the second episode. 2:09 - 2:11 again.

Friday, October 28, 2011

Too Much

There is just too much going on!
On Sunday I took the kids to an indoor playground for Adi's birthday. On Monday we had her party at home. On Tuesday we went to the geneticist. On Wednesdays I took Adi to pick up her new orthotics. Thursday was the last day one of Adi's special ed teachers came to work with her.  And my iPad sold. Today I have to go ship it!

Sounds like fun, doesn't it?

Now reeeewind. Indoor park photos coming soon. It was hot, stuffy, packed, and everyone wanted to leave after less than half an hour. Adi's party? A typical toddler event! Adi fell asleep on the couch right before the party and woke up confused and screaming. We had half the party without her. Then she came around and joined us for cake and presents! Who wants onion rolls with spread, anyway?

Geneticist went well. We will test for Pitt Hopkins syndrome. Eh, I don't know. It might be the right one, but I'm not putting stock in it. Other syndromes were much closer to what Adi has by description, and she tested negative.
The geneticist is a gem. I created a label for the posts I wanted him to see and he read through them before the appointment. I mean, who does that? A real gem of a doctor, that's who. He also spent over an hour in the office with us.

On the train to the geneticist, Adi acted weird. She started loving trains lately, and we went on trips all summer. She loved the trains and buses and never got motion sickness like she had before. Every time she sees a train now, there is a meltdown if we don't go on it. But this time, she asked to get off halfway through the ride. I was surprised, but she kept insisting, and then began to scream. Same thing happened on the way back home. In fact, I walked 1.5 miles to the train to avoid having to transfer.

Well, now that she had a bad experience, I figured she'd be cured of trains. I was getting worried about school. Her school is right near a train!

When I took Adi to pick up her new orthotics on Wednesday, I decided to walk past the school on our way home. I wanted to remind Adi of the place before I take her there next week. She saw the train tracks, and I held my breath. Will she scream to go on it? Or will the memories of the day before prevail?

She screamed. School time should be a fun experience! :O

Yesterday our teacher Aviva came for the last time. She was the first of the last teachers. The rest will have their last official day on Monday. It was sad! I hope we can keep up with all the therapists, but I know life gets in the way of the best intentions...

Maybe I'll post about the iPad situation later. I'm so tired. It's close to Shabbos. This post is long and boring without photos. Till next time!

Tuesday, May 17, 2011

Ohai!

We didn't sit in the house on this cold, cold wet day.
In fact, we walked a good three miles in the chilly rain. I took Gedalya and Adi to the dentist for the first time. Gedalya was brave and did everything perfectly! Adi... not so much. Poor Gedalya has to come back to fill seven cavities (*hiding in shame*). Adi probably has cavities as well, but she didn't let anyone find out for sure. I paid $50 for Adi to sit in my lap and scream while I hold her arms still and the dentist attempts to pry her mouth open.

One thing that annoyed me is the way the dentist blamed Adi's problems (four top front teeth chipping away until there is almost nothing left) on nursing.

 If you can see past the food she insists on plastering herself with, you can see how bad her teeth are, especially the two center ones.

There is a phenomenon called "baby bottle mouth" and although it only applies to formula or juice drunk from a bottle, several dentists lump nursing into that category without actually checking out studies done on the matter. Which is annoying. I didn't even bring up that Adi's geneticist thinks it's related to Whatevershehas Syndrome because this dentist was certain upon one glance that it's from nursing.
I will print out that study and several others and present it to him with a big red bow.

And speaking of Dr. Seuss, we went to the library next, where Adi spotted the Cat in the Hat sitting on a shelf and announced, "Hat." Cool baby.

I had recently made a goal bedtime for myself. Midnight. Which passed an hour and 40 minutes ago. Whoops. Seems like Adi is reminding me of it, so I'm going to ...ahem... nurse her back to sleep.

And speaking of reminding, I'm reminding myself to post the myriad new words Adi has! Next time. :)

Sunday, October 31, 2010

Dizzy Busy!

Otherwise titled: The Week of the Walk

Oh, how I needed this Shabbos to come. Last week was just... wow.
On Monday I took Gedalya and Adel to the library RIF program while Zusha was in cheider. The library is half a mile from my house... not bad at all. But then I have to go pick up Zusha, and that's a 1.5 mile walk from the library. Plus the one-mile walk home... that makes three. Gedalya hopped onto the carriage for part of the way, so that made for a REAL workout!

The next day we went to pick up Adel's orthotics!
 
 (Notice Adel's insoles on the chair on the left... they were taken out so the orthotics would fit inside the shoes. Below the chair is some cardboard full of molding plaster. Thankfully, we escaped that procedure, because Adel's orthotics require measuring instead of molding!)
That was really exciting. I can't wait to see Adel progress in her walking with the help of the braces. She needs bigger shoes now for them, so picking them out was fun!

Polo by Ralph Lauren Toddler/Little Kid Haro Ez Vulcanized Sneaker Naturino Infant/Toddler Falcotto 761 Bootie

Then we picked up Zusha and wound up with three miles of walking under our belts again.

Wednesday was a big day for Adel. We had a neurology appointment for her... a general checkup and a discussion about an MRI. Poor baby Adel was SO nauseous on the train and bus. :(  She was sweating, crying, screaming, wriggling, dry heaving. We got off the bus ten blocks early and walked the rest of the way to the hospital. Poor baby fell asleep. She woke up in the exam room in an AWFUL mood and was screaming the whole time. It was quite a flop.
Adel LOVES water and playing in the sink, so I decided to try that to calm her down.

 
 

The weather wasn't great, so we didn't go to too many places after the doctor. We stopped off in Borders and got some fun books and toys.
 
 

Then we went to the pet shop next door and played with the kitties. Gedalya was begging me for a parakeet, but we didn't buy one. :)

Thursday was Adel's one-year re-evaluation at the therapy center. We met with a government official. This was a crucial meeting where they were going to decide which services to increase, which to reduce and which to terminate. The Special Ed and Speech therapists put in for an increase, but Early Intervention started being very stingy with giving out therapy. We weren't expecting the increase, but we thought we'd try anyway. What we really hoped, though, is that they wouldn't decrease it. The therapists coached me on what kind of questions I'd get, how to answer and all that. I brought Adel along to show how she really isn't functioning on a two year old level. I brought letters from the geneticist and neurologist describing her level of delay. I needed to show them that this wasn't just an average kid who needs a boost, but would catch up sooner or later anyway. This is a kid who will not reach her potential without maximum therapy.
Well, we got Speech and Special Ed increased by one! It was very exciting. Now Adel has Special Ed four times a week and Speech three times. Occupational therapy was decreased to one, but that's okay because I wouldn't be able to fit so much into my week anyway. Then I went to pick up Zusha and that was three miles again. :)

And if you actually read all that, here are some photos as a reward. :D



The End!
...for now. :)

Wednesday, October 20, 2010

I'm Still Here

What happened to my posting? It went from 30 or more posts a month to less than ten! Well, not to use a cliche, but we've been... busy.:)

We've always been busy, and I've always cut corners somewhere because of it. Now the corner is the blog. :)
It's been kinda hard to blog because of all the changes Blogger is making. I used to upload photos to Shutterfly.com and drag and drop them into my posts. I used Shutterfly because I didn't like how small the images on Blogger were back then. But it was an extra step, so when Blogger raised their image size limit, I went back to uploading my photos straight to the blog.
There I encountered more problems. The new method didn't put the photos straight into the post, but rather kept them in a pop-up that you had to click to open. But if my browser crashed, or the kids closed something, the images didn't get saved. I lost a couple of posts like that and wasn't motivated enough to go search out the images again to rewrite the post.
Now they changed the upload method again, but it rotates all my photos! I have to go to my image editor and rotate the images I want to use to the left- so that when Blogger rotates them to the right, it works out. Whew. That was one more responsibility I didn't need. On top of it all, only one (out of ten) photos I wanted to put in this post actually managed to load.
So here it is. :)

I will switch back to good old Shutterfly and hopefully everything will go smoothly again. :D

In other news, Adi has a few new words:
Down
On
Hello
Hat
Hot
Hug
Finished

Probably more. I have to remember more. "Down" she learned when we were walking outside hand in hand. Whenever I wanted to pick her up, she yelled, "Up! Up!" She wanted to go DOWN, so I asked, "Down, Adi? You want to go down?" And after several times, she repeated, "Dine? Dine? Dine!"

She brings me any shoes she can find and says, "On!" It sounds like, "Ine!"

"Hello" is an old one. She takes a phone to her ear and says, "Ah-woe?" She also forces me to say hello into the phone for up to five minutes non-stop. LOL

Hat... "At!" She loves hats, and if she finds one on the floor (a fire helmet, police hat, yarmulka, or her own outside hat, she will insist everyone in sight take turns putting it on. That's why I am often seen walking around with a construction hardhat  at home.

Hug! Adel is a snuggle bunny, and is giving me hugs as I type. She presses against you and says, "Hock" while patting you on the back. Hugs are often followed by exaggerated kisses. :D

The sign for finished is brushing hands together. She does some approximation of the sign and says, "Nee-new!" Sometimes she also says, "Na moo!" (No more!)


So that's Adel's vocabulary update. I have so much more to write about, but I must run to pick up Zusha from cheider. Hopefully soon I will share lots of photos, news, and everyday happenings!
Oh... one last bit of Adi news. She will be getting orthotics! These are braces that go into her shoes. They are ankle-high, with straps in the front. I'm excited to see what it will do for her walking, because after that initial heart-stopping moment, she has walked on her own two or three times. She enjoys walking hand in hand but isn't doing it alone at all. So we'll see!

Monday, August 23, 2010

Accepting it with Grace

This post is raw and real and was hard for me to write. I don't know understandable it is... but, it is what it is. :)
Today we are heading to the geneticist once again. I have been there many times, but have not gone since right after Pesach. That's almost five months. I made the decision to take a little break, although I didn't sit down and decide that. It just happened. And it was good for me to forget a little.

Now we are going back. It's after midnight. I can't sleep. I'm writing up posts about our summer fun to distract myself. I'm listening to upbeat music. But still, the dread is there. As soon as I allow myself to think about it, my insides start shaking and my eyes get moist. And then I wonder... I thought I had accepted it with a full heart. I thought I was okay. I mean, I have it so good.

I thought that the poem I wrote last winter does not reflect my feelings anymore. I thought I was past that.


Looking at you;
Your deep, baby blue eyes,
What is it I see?
What is real? A disguise?
I know what I see,
Yet confused I am still.
Will it all turn out well?
It must, so it will.

Your eyes twinkle joyfully
Right back at me.
I don't know what it is
That I'm trying to see.
There is doubt, there is hope.
There is fear. And there's love.
And a prayer, and a prayer
Finds its way above.

Life is filled with busy, fun days.
Again I look at your sweet, happy face.
A glance
A chance
All doubts are erased.
Just look forward in life,
Accept it with grace.

And yet, as I cuddle
Your soft little frame,
I stroke your round cheek,
And whisper your name,
I can't help but wonder
What will be tomorrow.
And I promise, you, baby,
You shall never know sorrow.

I wrote this poem, but wasn't ready to share it with people I actually knew. I posted it on a special needs forum I am part of and the editor of Spirit! magazine, who also posts there, asked me if she could publish it. It's in the Spring 2010 issue. Now I feel somewhat more ready to put myself out there.
(Baby's not mine. lol.)

So I guess this is not something I will "outgrow" anytime soon. There will always be a delicate balance of  looking curiously into the future, trying to get a glimpse of what life will be like for us... and taking every moment of the here and now, ignoring whatever may or may not be. A balance of acceptance and ... hm. Acceptance vs. fear? longing? pain? I'm not sure myself, and I imagine it will be a long time before I get it figured out.

For now, I'll just strap on my baby carrier, watch Adi's eyes light up with glee as she raises her arms, "Aaahp!" and daven that this geneticist visit will be the one.

Monday, August 16, 2010

Trip Four on Week Four!

Normally one wouldn't call a gastroenterologist appointment a "trip" but wait till you hear about ours!

 According to the boys, if it involves a train ride, it's already awesome. :)

 The waiting room at the doctor's office was kid heaven. There were dozens of toys, including a train table!

 The kids approved.

We didn't really discover anything at this visit. Adel needs to be tested for several things because of the digestive issues she has. After our visit we went back to the waiting room to get ourselves ready to go, and the receptionist told us that they are cleaning out their waiting room and giving away toys. ALL the toys on this table... and she pointed to a table piled high with wood train tracks! Ohhh, how my boys love those train tracks. We packed a bag full and made away like bandits. :) 

Over 50 pieces there!

Then we headed towards the park. We passed by Borders and I got a couple of nice books on clearance as presents for the boys for future occasions.

We stopped by a street vendor to buy some berries and tomatoes for a snack and headed to the park. The sprinklers were on!

We hadn't brought a change of clothes because we'd have to carry them with us, and then bring the wet clothes back home, so I offered for the boys to take off their shirts (to keep them dry) and shoes and just run around in socks. Zusha didn't take me up on this offer. Gedalya did.

We all had a nice time there, running around and eating snacks.

Adel needed a blood test, so before going to he hospital, we walked 'round the back to the river. Bodies of water fascinate the Poozils.

As a sweet cherry on top, there is a heliport near the water!

A kid's dream come true... rarely visited body of water accompanied by humongous flying machines up close and personal.
"Perfect" is too mild a term to describe this!


After the blood test (six tubes!!) we headed home. On our way to the bus, we spotted a pet shop! What do you think we did? Said, "See ya later!" to the bus and marched right in to the pet shop. :) Did you expect otherwise from us? ;)


In our local pet shop, the birds and small mammals are in a separate room, where we can't go in; only watch through the glass door. But here we were able to get up close, and they all loved it! Adel was just "ah-mya"ing away!
Speaking of which... they had real live ah-myas!

They were so tame compared to our crazy cat!
We were told not to pet this white one because she is aggressive. Hmph, all she does is bat at you. Mel attacks much more fiercely.

Then they let another cat out of the cage to play with us. This one is a "flight risk" and has to be watched carefully when out of the cage so that he doesn't get out of the door.

The worker kept one eye on him, but mostly bustled around with papers and supplies. Whenever someone would go in or out of the shop, she'd hear the door open and glance to see if the cat is still there.
Uhhh, our Mel is a "flight risk" as well, and in this situation he'd probably open the door himself. One of the cats there didn't even jump out of the cage when it was opened, even though there was a sign on the cage that workers should be careful when cleaning because this one is a jumper.
Nice to know how normal cats behave. Now I have confirmed that mine is wild.


Soon enough we left and caught the bus. It was already 7 PM. After a long, long day and a long, long ride home, we finally arrived, stopped off at a pizza store for dinner and walked home! (BTW, I had not taken a stroller with me, so most of the time Adi was strapped onto me!)

Thursday, August 05, 2010

Week Four!


After a looong, fun and busy day at Prospect Park on Sunday, we went to our regular spot on Monday- the library. We're dedicated participants in the toddler RIF program there!

Adi gets happy over a giant "ah-mya."

Tuesday was Tisha B'Av.

On Wednesday we were back at the library for arts and crafts. They were making lanyard key chains, something that is too hard for little boys. So we didn't do it.
We were playing in the main room when Adel crawled over to a 13 month old little girl and started playing with her.

She was kinda poking her at first, and I reminded her to be "nice." (Petting gently while saying "niiice.") Well, what do you know? Adel actually said "naiiii, naiiii" to the little girl! She was making nice to this little girl, Tehilla, and Tehilla was reciprocating. Soon enough they began to hug, giggle, kiss, giggle, and hug and kiss.

If you would have been there, you'd have fainted of the cute.
All the librarians stopped working and strolled on over to watch. They were fawning over the two sweetie pies who were acting like they were best friends since birth. The librarian who does the toddler program took these photos with her camera phone and sent them to me.
It was the most awwww experience. :)
Adel has seen her new friend a couple of times since then and each time they smiled and giggled at each other.

Now! Thursday! There is too, too much to write about Thursday.
We went to Manhattan to see a gastroenterologist. Adel needed to get a few tests done because of her digestive and elimination problems. We turned it into a fun, fun trip, including a park, river, helipad, book store, pet shop, and even managed to fit in an unplanned visit to the hospital to get Adel's blood drawn in the lab since the GI doesn't do it in her office. Poor, poor Adi had six tubes of blood drawn. They tested for a bunch of things, including celiac disease and food allergies. My feeling is that it will all come out normal, and it's just her digestive muscles that are weak. Hopefully I will get results soon.

Friday and Sunday were uneventful for a change. :) On Sunday my mother came to visit and Adel, in her desire to compete for her attention, actually stood up and cruised around her grandmother's chair! She is able to do it, but it's hard for her so she never does. But what an injustice! Why should she share attention with her brothers? Hmmm? This calls for desperate measures.