Saturday, December 19, 2009

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.

Wednesday, December 16, 2009

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.”

Thursday, December 10, 2009

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?

Thursday, December 3, 2009

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 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?