Lately...

Amelia and Daddy:
Lazy Sunday at the Hudson River Park

Amelia is doing really well -- besides getting over a pneumonia, she's been doing great. The newest thing Amelia is doing is this acrobatic rolling/sitting up/belly crawl thing. She doesn't do it all the time, but it's starting. Although, the sitting-up-in-the-crib thing is a pretty regular routine now.

Amelia loves school and gets really excited when the bus comes in the morning to take her. Here's what happens:

8:30am - Amelia's nurse, Luiza arrives and buzzes up to me to let me know she's arrived

8:40am - I put Amelia in her stroller and we head downstairs to meet the bus

8:42-9:15am - the bus rounds the corner onto 10th Street from Hudson St., I pick Amelia up out of the stroller, while Luiza grabs her Tinkerbell backpack and feeding pump backpack. We carry her to the little bus and I pass Amelia off to the lovely woman who takes her and straps her into her carseat on the bus. Meanwhile, as Amelia gets strapped in and Luiza gets situated, I run around to the window where Amelia sits (just behind the driver) and wave...blow kisses...and make an ass out myself for the whole neighborhood to see! I love it and it makes her and all the other kids crack up.

HOWEVER, somewhere in this lovely morning routine -- some bitchy, grouchy, dumbass cabbie, scooter driver or whoever will inevitably shout out TO ME ...."awwwww, come on lady. WTF????" To which I respectfully yell back "REALLY? You think they're waiting for me to finish my goodbyes, Jackass????? They're strapping her into her seat, Moron!!!!!" Yesterday I even had my neighbor downstairs with me. She gave our verbal assaulter the finger. Ah, I love NY!

Yesterday, while I was shouting at stopped traffic, Nestor went off to play in the 8th Annual Tony Darrow Celebrity Golf Tournament for UCP, NYC. Nestor's been doing this fundraiser outing since it started -- long before Amelia arrived in our lives.

Back story: It was at one of these tournaments, 3 years ago, when we had first returned from California (where Amelia was born) that Nestor bumped into Ed Matthews, the CEO of UCP, NYC. He asked Nestor how things were going and to be honest, we were in a very dark place at that time. Ed asked "how can we help?". Three days later, Ed, his second in command, Linda Laul and their "get-it-all-done-go-to-gal", Chrysanthia Kaputsos were sitting in our living room, cradling our infant girl and putting together a plan for us. UCP, NYC has been incredible to us, holding our hands through some of the most slippery slopes we've ever had to navigate, as parent's of a child like Amelia -- and they continue to do so. It feels like there is no way they could possibly give of themselves as much as they've given to us day in and day out ...only to come to realize that this is, indeed what they do for everyone. These folks at UCP are angels.

Back to yesterday....Nestor left early in the morning with our neighbor and good friend, Joe Lisi so that I could have the car to drive out to where they were playing this year (about 45 minutes away) and come to the dinner reception and show in the evening. What a fun time! The food was fantastic (I think I ate 5 lobster tails and who knows how much sushi) and the show was, as always, very entertaining. The acts are always great, but it's the shenanigans that happens between the performances that's always fun to be around. Tony Darrow is known for his wiseguy roles in "Goodfellas," "Sopranos," etc. so he always invites his paisans to attend the fundraiser. All the celebs sit together and it's really a blast.

There is always a child honored at the event and this year it was a handsome, little boy named, Maximilian. He's turning 5 on Thursday. Max is small with little head control, he can't move his arms, he is in a wheelchair and his speech consists of sounds and lip movement, with no audible words. But I'll tell you what... he has the sweetest smile, charming personality and is so communicative in his own special way -- it lit up the room and everyone in it. And he is loved. So loved by his wonderful parents and grandparents, who were all there. They are lovely people and Nestor and I had the pleasure of speaking with them for awhile.

Nestor will be leaving next week for Puerto Rico to shoot a film for about a week. Amelia and I will be hanging here for those days until my cousin, Jen comes up on Thursday to drive back to MD with us on Friday. The fun thing is that we're going back to MD because my mother is getting Bat Mitzvahed on Saturday. That's right folks, my 68 year old Mother is getting Bat Mitzvahed on August 8th. She's been taking classes for 2 years and the day has finally arrived. My brother and his brood are all making the schlep from Albuquerque, NM for the event. Nestor will fly into BWI on Friday meet up with us.

I'm sort of happy it worked out like this though because Jen and I are best friends. With both of us having kids and being in different states, we don't see much of each other these days, so I'm really looking forward to getting out with her when she gets here. At least for a few hours while Amelia is with her respite worker and in school, Jen and I can get a glimpse of our lives before husbands and kids......

Summertime and the living is...hectic!

So. Here we are. We've had quite the couple of weeks. Let's begin with the major efforts which was packing up the house upstate. I know, I know -- you're sick of hearing about it. Me too. So let me just give a big shout out to those who sacrificed weekends and holidays to help us make this thing happen.

• Evelyn & Carlo/Titi Evelyn & Uncle Carlo
• Karena & Jonathan
• Mom & Dad/Bubbie & Zadie/Dona Ruth & The Good Dr.
• Art & Terry/Titi Terry & Uncle Artie
• Josette & Nick

WE LOVE YOU!!!!
WITHOUT YOU, WE WOULD NOT HAVE BEEN ABLE TO DO ALL WE DID!!!!

That said, it's really strange for us to no longer have our beautiful place to go to anymore. Sad.

Moving on. After packing up the house into a Pod and having it picked up and put into storage, we brought several boxes, our luggage and a set of golf clubs back with us into the city and have been staring at them since. We've been able to unpack a couple of the boxes...but a few are now playing the role of "ornamental cardboard." Perhaps a coat of paint and they could live there? The luggage and golf clubs have been strategically camouflaged behind Amelia's therapy equipment in the corner of the living room...lurking under her therapy ball. Not too bad tho considering.

Because Amelia was off of school for a week and a half (6/24 - 7/6) before her summer session started, we took off for a couple of days (packing yet again!) for Baltimore to visit my family down there. We had a nice getaway and got to see everyone. BBQ at my cousins, Mitch, Barbara & Hannah's on the 4th and sparklers in the backyard. Lots of time with my sister, her husband and kids -- whom Amelia adores!

The big bonus for me was getting to see a friend of mine from high school, Jodi who has become such a wonderful friend and huge support for Amelia and I through our blogs(see Amelia's Friends link to "An American Mom in Tuscany: Jordan's Cochlear Implant Story"). She is a dynamic and fearless advocate for her son, who has Cochlear Implants and has inspired me beyond words. Also, I actually got to meet her son and daughter too (I've only read about them on her blog) which was really cool! I think she felt the same way when she met Amelia. We've become invested in each other's lives through our stories and tales...to actually meet the person who inspires it all -- and ourselves -- is really.....cool!

We came back a couple days ago and Amelia started school again. Monday night, Amelia spiked a fever. Tylenol and motrin kicked it. Then, yesterday I got the call from school that she had 99.8, so they gave her tylenol and off we went to pick Amelia up from school and take her to the Drs. office. They did bloodwork and sent us to the hospital to get chest x-rays...and as we suspected, pneumonia. A very small case of it, as we caught it very early. Allow me to give you the back story that a couple of weeks ago Amelia was spiking fevers so we took her in for bloodwork and it showed her white blood cell count was at 33.4 (15 being the norm and 20 considered high) -- so her count was very, very high! Knowing there was infection somewhere( we would have had to have done a battery of tests to find out exactly where -- so we decided to treat the whole person rather than put her through more studies), we put her on 10 days of Biaxin. That cycle ended last Wednesday...so you can imagine that 5 days later, when her fevers started again, we were disheartened -- to say the least. But, we caught it early -- 10 days on Augmenten and she'll be good as new. Amelia seems herself, just with heavier and thicker secretions -- but jolly and happy overall.

I also wanted to mention that I was able to attend the Bris of Judah Shai Leshin a couple of weeks ago and felt so blessed to sitting among all his friends and family. Carrie, Scott and Sam, he's going to take great care of you! My heart is bursting for you all. (See the Leshin's blog "In Through The Out Door" from Amelia's Friends.)

Packing for our lives

For those who have never seen the house (16 acres, like living in a park!)...

front
back

living room

What a hectic time. Let's just say from the get-go, Amelia is doing great! Her site is healing really nicely. Her eyes are getting straighter as the swelling is going down. We took her to the ENT and she passed her hearing exams with flying colors! And happily, Amelia is breathing out of her nose a lot more now and sleeping much more comfortably these days.

The biggest challenge recently, for us, is getting our house upstate packed up for our new tenants moving in on July 1st. We have 20 years of Nestor's stuff to pack up, 10 years worth of my stuff -- not to mention the stuff that belonged to the woman who sold Nestor the house -- WITH EVERYTHING IN IT! So now I'm sifting thru a lot of her leftover stuff which is sooooo cool. The house is from the 50's and the couple who lived there built it as their summer home. They traveled the world and brought back lots and lots of stuff. Not sure if anything is worth anything, but it's so cute and kitschy -- I just can't part with much of it. There are sheets from the 50's and 60's still in their wrapping along with dish towel sets, aprons, oven mits, dishes (china and depression glass sets) and table cloths from that era. The colors and patterns are outrageous. I just love it all. So we're packing it up with the rest of the junk we have.

We didn't get nearly the amount of packing done this weekend as I had hoped to, but we have family and friends coming up next weekend to pitch in and help get our POD packed up. I did, however, weed through lots of stuff and throw out a ton of stuff. It's just a never ending pit!!!!! Nestor keeps assuring me that it will all get done...I'm not so sure I'm buying it.

We've also been cleaning house here in the apt to fit the stuff we're bringing from upstate into our tiny apt. It's so hard for us girls to get rid things because, unlike the boys, we need our fat clothes! I wear a size 6 right now...but I might get fat again one day and I'm gonna need that awesome size 10 dress. You know what I'm talking about!!! So frustrating. We have a Housing Works literally, downstairs from us and Nestor can't get my reject piles out of here fast enough -- so I don't change my mind!

Nestor is going back to Miami on the 22nd to finish a movie he worked on earlier in the month. He was supposed to go to Costa Rica from there to work on another project, but thankfully it looks like that was pushed to August, so we can get back up to the house when he comes home on the 26th for another few days to finish up the last of the packing.

Amelia finishes school on the 24th for a couple of weeks and then summer session starts on July 6th until mid August.

And me? Well, I'm just trying not to loose my mind in all of this and keep on the treadmill for my 7 miles a day. Oh and we drink wine...or rum...or...

Back to school baby -- oh yeah!

So Tuesday was Amelia's first day back at school. We drove her as I was too afraid to put her on the bus. The woman on the bus who handles the kids is lovely -- but it's such a hectic couple of seconds as you pass off your non-ambulatory child to this hefty woman who puts them into their car seats, before the bus driver closes his STOP sign to oncoming traffic and I scurry across the street to catch a glimpse of my girl in the window, who laughs at me as I make a fool of myself on the street waving goodbye to her and blowing kisses. But Tuesday we drove her. She did so well that we decided to send Amelia on the bus on Wednesday. I told the bus driver and woman who places the children in their seats that Amelia had surgery on her belly and has stitches there -- and I could see she really placed her gently. THANK GOODNESS! So that's back to normal -- sort of.

Amelia has a new nurse at school, Luiza. She is a sturdy Russian woman who is very sweet, but clearly overwhelmed by the crazy school schedule. Amelia needs a lot of care and Luiza has another little boy who she needs to tend to here and there. But she seems to be getting the hang of it -- as reported to me today. I was afraid she wasn't going to last the week. I'm not sure how Amelia has taken to her, it's hard for me to tell because whenever I see the two of them, Luiza is talking to me about "how hard today" was. On the other hand, she must be bonding with Amelia in some way because Amelia doesn't cry when she sees her -- crying is usually the first sign to me that whoever it is taking care of Amelia isn't making the grade. So we'll just have to see about this one.

All in all, I know Amelia is so happy to be back at school with all her friends. They were so happy to see her too. Amelia's teacher, Patty sends updates daily in her "communication book" (it's a composition book). Yesterday Amelia came home with glitter everywhere...I mean EVERYWHERE! Her diapers were sparkly!!!! So fun!!! Her therapists report that she's doing really well too. I know she's seeing and hearing better and it's really something to see how remarkable her eye contact is since the strabismus surgery. Amazing! She responds more vocally and is into everything. Lots of playing with two hands and incredible sitting up. Amelia's belly is still sore. Her norm is to lie on the playmat on her belly -- can't do that -- so she's sitting up so incredibly, for an hour or so, just playing with her toys. We're also noticing a lot more mouth breathing and she's much quieter than she was.

Next week we go for our follow up appts and to get the stitches out of her site. That should make her more comfortable.

Also, we rented out our house upstate so we're in the process of emptying out 20 years of stuff. Sooooo much stuff. An overwhelming task to say the least. Gotta be out by July 1st. OY! Well, wish us luck -- we're gonna need it.

Best Day So Far

Well, it's been inching the right direction each day and today was the best so far.

We were released from the PICU on Thursday and came home to find my Mom (Bubbie) and Amelia's nurse, waiting outside for us. We loaded her out of the car, brought her upstairs and propped her up on pillows on her playmat in front of the TV for the rest of the day. Cranky and kvetchy, she just stayed there and watched episode after episode of all her favorites. Amelia was fed there and given her breathing treatments there -- all propped up like the Queen of Sheba!

Amelia has a new G-tube button called a Bard button and I'm still getting the hang of it. It's similar, but different enough from her old one to cause me stress -- the extensions and tubing are rubbery and it's not fun giving her medication thru them because I never feel like they're attached properly.

Nestor got a call Thursday late afternoon that his Manager had closed a deal for him and he was flying out to Miami on friday morning at 7am. Ummm...ok. So my Mom switched her plans and stayed here with me for the weekend into the beginning of the week. Thanks Mom! Always here whenever and wherever needed. We are very blessed!!!!
I think Nestor will be home tomorrow, so that's good -- cause I know Dad is missing Mom (awww!).

The first night home was pretty bad even tho I had given her 2 doses of Tylenol with Codeine throughout the night. The next night was a little better, last night better and well...I'm keeping my fingers crossed for tonight. We've been giving her Tylenol around the clock -- and no more codeine since the first night.

Today Jackie, my sis, El, my bro-in-law, Ezra,(4) their son and Maya,(almost 2) their daughter, visited us in the city. It was great. They came up on friday to go to an Anniversary party for old family friends of El's and stayed for the weekend up in his old neighborhood. So today they drove down and spent a few hours with us. Amelia was really happy to see her cousins. We had lunch and went to the park. It was Amelia's first time out since the surgery. It was a gorgeous day and she really enjoyed herself. I hadn't seen Amelia sit up so tall in her stroller in a week. It was great! They all left and of course, Amelia took a nice long nap. After, she got her breathing treatment and Bubbie and I took her back to the park before giving Amelia her first bath since the surgery (which she really seemed to enjoy)and dinner.

We're keeping her home tomorrow with the intention of sending her to school on Tuesday. Hopefully...

Pain, pain go away!!!!

Well, surgeries were a success. All three docs reported that things went well. Amelia is in so much pain. We spent hours in Recovery and then were put up here in the PICU overnight. They were concerned about her respiratory system. She had some pretty heavy stuff coming out in the ER and I've been suctioning her more than I have in years -- of course, she keeps crying so that's not a huge mystery as to why!

The Opthamologist did a great job and was really happy about how it went. But it's very sad to see your child cry blood tears. Amelia has a big, swollen blood clot, in the inside corner of her right eye, both eyes are reddish and slightly crossed (this is normal and within a few weeks/months they should straighten out).

The ENT told us that he had thought the adenoids were blocking 90% of her nasal passage, but when he got in it was worse. He said it was growing into the back of her mouth. It was completely blocking her nasal drainage and on top of that, her tubes were either no longer in/not working, so there was tons of fluid and puss built up in her ears. Poor little thing!

Amelia now has a little button in her belly called a Bard Button, as opposed to the Mic-Key button. It's smaller and more flush to her skin, but it doesn't have a balloon to inflate to keep it in her stomach -- it's more of a hard plastic mushroom on the inside to keep it secure. The downside is, if something happens to it, we need to run to the ER to have it replaced (I can replace the Mic-Key myself) because the Bard has to be inserted through the esophagus (YUCK!). So that's a little worrisome. However, the chances of it coming out is less than the Mic-Key because it's a more secure device -- no chances of a balloon bursting. Oh well, just a month or two before they switch it back out for the Mic-Key.

So that's us. Thank God this day is over. Each day will help her heal and get back to being her happy self. Right now she's in a crib, in a room, shared by two other kids, watching Tigger and Pooh on our computer at her bedside. She's crying and fussing and giving me a heart attack every couple of minutes as she throws her arm with the IV around or tries to kick around, while they're finally giving her some Pedialyte in the new g-tube. Glad to see she's getting back to normal.

And a BIG thank You to Chai Lifeline for bringing us a delicious, hearty and appreciated dinner tonight at the PICU. We are so lucky that they are just a phone call away in times of need.

Waiting

We're here. We met with the 3 docs doing Amelia's surgeries. I carried her into the ER. Sang "5 Little Speckled Frogs" as they put the mask over her little nose and mouth. She smiled up at me and then faded into sleep.

They have 3 hours allotted. Eyes are first, then ears and adenoids and lastly, close the existing g-tube site and create a new one. Each doc will find us here in the waiting room after they have completed their procedure.

Calgon take me away!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!