Shoes

Amelia having breakfast

Amelia is growing so quickly -- I can't keep up. For one thing, like most women, she has a very extensive wardrobe. Tons of hand-me-downs, plus Bubbie and Zadie take the kids on a back-to-school shopping spree each year before school starts AND we just got out of a very heavy holiday and birthday season. This means that every nook and cranny of our little apt is crammed (very creatively, I might add) with all her little outfits, shoes and accessories. Recently her feet had a growth spurt and I had to run out yesterday to buy her new shoes. It's not as critical with a non-ambulatory child to get them the most expensive, well made and supportive shoes -- when she walks it's in her braces -- so we just go for cute. Works for us!

NEW SHOES!

This has been a curious week of ups and downs. Amelia, Nestor and I have been fighting colds since last weekend. No fevers for Amelia, just lots of secretions. It's been rough because I've been up with her nights -- and I'm trying to fight off my own thing (no rest for Mommies!) -- but really great because she's getting thru this without antibiotics (very uncommon) just lots of respiratory therapy to clear her out.


Nestor and I had romantic dinner on Tuesday nite (thanks Jozette! -for the giftcard) and on Wednesday I drove him to the airport to go to LA for a month or so. Usually these drop offs are very hard for me, but not this time. We have had such a great couple of weeks together, alone and as a family, it made his leaving easier. Strange -- but I really felt ok when he got out of the car. Usually I drop him off and as I pull away from the curb I start bawling like a baby. This lasts until I get lost on the ramps getting out of the airport and then thru my haze of tears and swollen eyes I have to figure out where the hell I am and how the hell I'm going to back on the highway or parkway -- or whatever the heck they call the damn thing that gets me back to the city. By then I'm just annoyed and forget all about why I had driven all the way out to the airport in the first place!!!

So Amelia and I got thru the week unscathed. Still fighting off our colds. By yesterday I would say we're both over the hump and sleeping thru the night nicely. Ahhh. Yesterday my friend Sarah came into the city to visit us for the day. It was really nice spending quality time with her. She's one of those friends who's been in my life for so long -- thru different apartments, dogs, boyfriends, husbands, etc.... Someone you know will be with you till the end, ya know? Anyway, we journeyed to Chelsea Market and Amelia and I settled in to watch this really amazing String Trio playing live in front of Amy's Bread, while Sarah went to get a coffee. Amelia was really digging it! I wanted to give the band a dollar but only had a $20. I asked a jolly 60-ish man behind me, who was there with his family, if it would be rude to take change out of the musician's tips, at which point, he reached into his wallet and gave me a dollar to give them. I laughed and refused, but he pushed it into my hand and said he and his twenty-something (son? nephew?) had already tipped them. I felt so odd. Like I was standing with "Every Uncle". I really loved this happy man and his sweet family in those moments. When Sarah returned with her coffee she offered this man back his dollar -- to which he laughed a jolly laugh -- and told us to please keep it -- or give it to the band. Yes Virginia, there is a Santa Clause...he hangs out at Chelsea Market in the off season!

Today Amelia and I are doing the Mother/Daughter hang for Superbowl Sunday. Amelia isn't really into either team, so we'll probably just find some chick flick to watch.

Happy Birthday Sunshine!

It's been such a busy couple weeks. Running from doctors appointments, to UCP for new AFO's (Ankle Foot Orthotics) & to look at new adaptive equipment which we are very excited about, to visiting Adaptive Designs (see link on side bar list), which is one of the most incredible places we've ever visited! Amelia got sick last week and is on 2 weeks of antibiotics, eye drops, ear drops -- along with all the usual meds and respiratory routines. Plus, she shared with Mommy, so I got pink eye too and some kind of sinus thing. We're much better now.

So, Adaptive Designs is a place in NYC that builds furniture out of heavy duty, dense, corrugated cardboard. They bind together layers of it so it feels as strong as wood -- it's incredible. And because it's cardboard they can build ANYTHING! If you can dream it, they can build it. We ordered a high sitting chair with a 10% decline insert that forces the person sitting in it to engage their core muscles -- I think I need one. Also, they're building her a table with an attachable board that can be positioned from flat to 90 degrees and is covered with velcro so we can attach toys to it. We're so excited! We were also able to borrow a scooter from them (if you go to the website, go to Hannah's story -- it's the big wheel scooter that she outgrew in the pics). And my favorite part about their furniture is that it is all painted up beautifully. So much of the equipment, that our children need, is institutional looking -- everything there is a work of art, all hand designed, built and painted. They also work on the "no child left behind" policy which means -- your child needs it -- we're gonna build it -- and we'll figure out how we're getting paid later. The people there are truly, all heart!

We saw Avatar a couple weeks ago (if you haven't seen it, you must -- in 3-D, we want to go back to see the 3-D IMAX version -- which was sold out). Nestor and I were struck by one of the lines, "I see you." I love this line. It's how I feel about Amelia. She can't speak, eat or walk -- but I see her. I see this little soul and I know this little person. She is goodness, innocence and love. But she is also opinionated, sassy and demanding. Amelia can't tell you exactly what she wants, but boy will she let you know -- her way! She has perfected her laughing, happy sounds, head shakes, signing "give me", wailing and a little crying (Amelia is quite the diva-drama queen). She makes her voice heard.

Amelia's birthday is on Sunday. I can't believe how much my life was changed *forever* four years ago. I cherish every moment with her.

Happy New Year!!!

Chelsea Market
Christmas 2009

OK, let's cut to the chase. Between Christmas and New Years, Amelia had her Nucleur Test. This is where they put radioactive dye thru her G-tube and do several studies to see how her system is digesting and if there is any reflux and/or aspiration happening. She was such a good girl! No one could believe how sweet and cooperative she was. Amelia is not at a point where you can tell her to sit still and she understands. She is 3 (almost 4!), with global developmental delays! But boy, o boy -- she was put on the gurney and fell asleep -- for all three studies! What an angel.

AND THE RESULTS OF THE STUDY ARE (drumroll please)...Amelia is NOT refluxing or aspirating. This is very good news and gives us a clear understanding as to what is going on.

This means that all of her recent pnuemonias are a result of her not handling her secretions well. They sit in her throat and chest and because of her hypotonia (low tone), they pool, grow bacteria (dark and moist conditions) and eventually make their way into her lungs where the infection blossoms and off we go to the emergency room in the middle of the night!

However, let it be said that since our last hospitalization in November, Amelia has not had a pnuemonia. She got a cold a couple weeks ago -- and that is ALL it was. A cold. This has never happened in this household. A runny nose has always led to a full blown respiratory fallout -- with major courses of antibiotics, steroids and a slew of breathing treatments.

I attribute all of this wellness to our new Pulmonologist, Dr. Marcus at Maimonides -- who we were led to thru our wonderful friends Carrie & Scott (shout out!!!). From our first visit he was so proactive in Amelia's respiratory treatment and this is exactly what she needed. We had a routine visit with him on Monday and I swear, it's like Amelia understands how much this man has helped her because everytime he walked in the exam room she smiled and laughed at him. That's not typical behavior with a semi-stranger for her. It's great! We are so lucky to have found him.

Yesterday, Tuesday, we went up to UCP to have Amelia fitted for new braces (AFO's). She is growing like a weed! We're about to order our first adaptive stroller, the Special Tomato EIO Pushchair -- anyone out there have it? It's really nice and I think she'll be much more comfortable in it. The Physiatrist, Dr. E and PT, Michelle, can't believe how big she is. The group there has known Amelia since she was about 6 months old, so it's great to get their perspective and input as to how she is developing. Dr. E was saying "Boy, she's moving a lot. One day she's going to be running around and..." I just glow when I hear someone who has worked with so many kids like mine say that. Dr. E has seen a thousand Amelia's -- and I get giddy when I hear her talk about what she sees for Amelia's future. I see it too!

I try to do a lot of walking with Amelia. She's gotten so strong. I stand behind her, hold her hands and she'll take steps and walk. It's HUGE! I used to have to hold her by the hips or under the armpits, but now she'll walk just holding your hands. Of course each step is a struggle, but she is so determined and I am so excited each time I see her achieve a voyage from her crib to the living room or to her stroller. I still can't believe all she can do!!!!

Also, we've discovered that Amelia is huge grape fan. In the car ride down to Baltimore last week, Nestor and I were snacking on grapes and I felt bad -- because whenever I'm ever eating anything Amelia gives me the stare -- the one that says "Give that to me!" Well, I put one between her teeth and had her bite down on it, then rubbed it all over her tongue and gums -- she loved it. She kept reaching for more and more grapes and I would repeat this ritual each time. Her Speech Therapist came for a session for the first time since the break and I told her about Amelia's new love. She tried it with her and said that she got the best jaw movement she's ever gotten with the grapes! Now that's how you start the year off right!

Snow Day

Yes! We are in the midst of a "White Out!" It's snowing friends. We are hunkering down for a laaaaazy Sunday! Can't wait!

Amelia's been having a good week, although she seems to have some kind of runny nose and sneezing thing. There's been lots of wiping and suctioning, but no fevers or up-all-night. It seems like the respiratory regimin we've been doing 2x's daily is keeping her on the healthy side. Amelia also got the second half of her H1N1 vaccination this week. Such a brave girl! She didn't make a peep when she got the needle.

Lots of good gifts for Chanukah this week too. What a scam! This girl gets both Christmas and Chanukah gifts! Who's better than her? Such fun. AND...we haven't even gotten down to Baltimore yet to see my family! Lot's of presents waiting there too.

Last night Nestor and I had a date. While Amelia hung home with Jozette, we hit The Angelica and saw "Crazy Heart". We really enjoyed it! It's the first movie we've seen in a really long time -- and this morning we went, at 7:30am to The Ziegfield Theater to see Disney's "The Princess and the Frog". Nestor is a Friar and each year the Friar's Club does a movie event for kids with special needs and kids from the inner city. It's flawlessly supervised and executed. The woman of the day, Allison Grambs, who is the planner, contacts us each year and sends tickets for us and any extras we request. She ropes off seats for us and it's so much fun! Last year we had our friends, the Leshin's join us (who have a little boy with CP too), along with Amelia's nurse, Lia with her son and we got a bunch of tickets for families at The Ronald McDonald House. We had no idea how Amelia would do last year and surprisingly, she loved it! I would say she did even better this year!!!! The Leshin's didn't make it (hope Sam and Judah are feeling better!) this year, but Lia made it with her son and also, Jozette, Amelia's respite worker, with her family. Then we scurried home and hunkered down for the rest of the afternoon. What a great day!

Next week is a short school week. We're taking Amelia to UCP on Tuesday to get her fitted for new AFO's (leg braces) and to look at some adaptive strollers. Uch! I've put this off for so long because I've been in denial that she would actually need a wheelchair. Well, this is the first step toward that -- hey, it is what it is...

We're spending Christmas with Nestor's family and staying around town because Amelia is having a Nucleur Test on Monday and Tuesday between Christmas and New Years. They will inject dye thru her g-tube and do some studies on her gastric emptying. We'll go home and come back the following day to get studies done on her chest to see if any of the material was aspirated into her lungs. We're doing all of this to see if Amelia's fundoplication has come undone. We'll know more after.

On Wednesday we're heading down to Baltimore to see my family. We'll spend New Year's there and head back to NYC on Saturday.

I'm really looking forward to having a nice long break to visit all our friends and family -- it finally feels like the holiday season and I'm loving it! Happy Holidays All!!!! Peace, love and above all, Happiness to all of you.

Heaven’s Very Special Child

By Edna Massimilla

A meeting was held quite far from earth.
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow,
“Accomplishments she may not show.
“And she’ll require extra care
“From the folks she meets down there.
“She may not run or laugh or play,
“Her thoughts may seem quite far away.
“So many times she will be labeled
‘different,’ ‘helpless’ and ‘disabled.’
“So, let’s be careful where she’s sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they’ll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven’s very special child.”

The Holiday Rush

The holidays are right around the corner and Nestor and I have been running around gathering supplies. Every year there is the regular gift list...but the last four years it's grown exponentially. We have lots of therapists, local pharmacies, nurses, Jozette (our respite worker) and Amelia's whole school crew...along with all the usual suspects. So what to do?

I've always enjoyed being crafty/baking so I've taken to making things for everyone each year. Last year it was gourmet caramel apples with Belgium chocolate, crushed nuts and oreos -- they went over really well! This year I'm mixing it up and doing cookies in a jar (you know, where you layer the ingredients) and my (slightly famous) white chocolate popcorn. I got the initial popcorn recipe from my Aunt Andi (thanks!) several years ago and have added and subtracted stuff to it over the years. It's great to give to a larger place, like our pharmacies, Amelia's school, etc.

What do you do for the people who help your world go round?

Cake, Bibs and Pups

Amelia smells like cake! She came home from school today with cake batter all over her clothes. Amelia doesn't eat so for me this is a huge treat. Anytime she has food stains on her clothes -- I jump for joy. Today at school they had "cooking" -- so cute! For those of you who enjoy the sweet smells your child has after they eat candy, cookies or pudding -- breathe it in, cherish it, then go spray the clothes with OXY! (that stuff gets out everything!)

I can't believe it's already been a week since Thanksgiving. Time is a flying! We went to my niece, Karena's in Jersey City. It was scrumptious, delicious and decadent! Amelia could not keep her hands off her big brother, Spike (21). She kept grabbing his shirt, hoodie, whatever she could reach from her stroller while he sat at the table trying to eat! We left her house and headed straight to Baltimore to see my family. We were there until Monday. It was a terrific trip which included being with my sister and father on their birthdays, seeing family, my 20th High School Reunion and a Memorial for a friend, Dyana, from my class, who just passed away after a long battle with cervical cancer. It was so good to see so many old friends -- even though the Memorial was sad, it was nice to be there for it. Being out of town means missing lots of things I wish we could be there for.

One of the things that struck me while in Baltimore is how Amelia's younger cousin, Maya (2) has finally passed Amelia. Amelia has been somewhat competitive with Maya in the past and would vie for Maya's brother's attention, Ezra (5) (who is off doing many "boy" things these days, very understandable:). But Amelia is now interested in this cute little girl, who is on the fence about holding Amelia's hand because "she hurt me". We explain that Amelia doesn't mean to and that she loves Maya -- but I get it! At 2, I'm sure I wouldn't want to hold hands with someone who holds my hand too tight either. Maya also wants to know "why doesn't Amelia talk?"

Before we start saying "awwww, that's too bad" I must go on to tell you that as cute as Amelia is -- she is also a bit of a hell raiser at school! (That's my girl) Nestor and I went up to the school to pick Amelia up for a doctor's appointment and I was watching the kids during circle time from the doorway. All these sweeties are sitting in their adaptive chairs, listening to the teacher recite a story and interact with switches and such when I witnessed Amelia reach to the boy next to her -- who was just sitting there minding his own business -- and grabbed his bib, yanking it to her. Poor thing! All the nurses and attendants sitting there got the fabric out of her little vice grip and restored order. Everybody laughed! OY! Obviously she didn't mean to hurt anyone...but she was curious and she wants what she wants, when she wants it!

In terms of health, we've been good! Six weeks of antibiotics will do that! She finishes next week. It's part of the new regimin our Pulminologist put Amelia on for a chronic sinus infection which, we believe, is due to reflux. We are still doing the Vest and Cough Assist 2x's daily. As we gear up to start a new round of tests (they will inject radioactive liquid thru her G-tube, wait, and if it shows up in her lungs we know she's refluxing) -- to find out whether her fundoplication has come unwrapped or loose, or if she is just aspirating on her own secretions...you get the idea. Anyway, hopefully we'll have more answers in the next couple weeks.

Amelia's been doing lots of grabbing at everything, everywhere, all the time! I love it. She also has a new found interest in dogs. We take Amelia to the puppy store windows on Christopher Street all the time and she loves watching the pups. She puts her hands on the glass windows -- and I have to say she's quite popular because she has more brightly colored toys on her stroller than most kids have in their toy chest -- hint, hint -- puppies love that! They come up to her from behind the window, eying her ball and rag doll. Fun! And there are a couple big dogs in our building who see her off to school most days -- Chloe (Boxer) and Marshall (big Labradoodle) -- she like to pet their noses! I would love to get her a service dog one day, down the road -- seriously down the road! But how fun would that be? I'd absolutely have that pup doing Amelia's laundry, making her bed, etc. I can just see it now with one of those Donna Reed aprons on. Is that wrong?