Saturday, December 29, 2007

Still in MD

This is an old photo...from last spring.
Amelia's first haircut, including Amelia (pudgy stage),
Mommy, Bubbie, Aunt Jackie and big cousin, Ezra.
Too precious to keep to myself!

Amelia and Maya, Thanksgiving 2007

We've been here since Thursday. We went to our friends', Shawn, Donna and Darmia for Christmas Eve and it was really lovely. Amelia was a true people magnet. There must have been at least 3-4 people around her at all times thru the nite. What a fun time. Spike came with us and it was great having him there.

Tuesday we went to Evelyn and Carlo's. Nestor's mom, Regina was in a great mood. Dancing and singing to Amelia all afternoon. Really terrific. For those of you who don't know, Regina has Alzheimer's and it's always a crap shoot to see how she is that particular day. We had a perfect day with the family.

Wednesday we went up to the house and spent the night. We saw Titi Terry and Uncle Artie while we were up there. It was freezing when we got there, but by late afternoon it had warmed up. Don't worry, we had the girl all bundled up in an extra heavy sweatsuit. Poor little Amelia...she rolls with the punches!

We left first thing Thursday morning and headed back to the city for a VERY important lunch date. We met Spike and his new squeeze, Christina. She is everything we could want for Spike. Sweet (so similar to Spike, very quiet), smart (double major: Anthropology and Asian Studies) and beautiful (exotic -- Greek and Romanian). We were so happy to finally meet her and she was very forgiving when Amelia kept stealing her menu from her. She very reasonably gave it up and shared Spike's menu! After lunch, Nestor dropped "the kids" off in Chinatown so they could go exploring the city and work their way thru Little Italy, up thru Soho and on up to Chelsea Piers to ice skate and go bowling. Ahhh, to be young with no responsibilities.

We packed up and left for Balto later that day and made it here in only 4 1/2 hrs and 2 Disney movies! (usually it takes 3 hrs.) And we've been here ever since. I'm very happy to report that my Mom, sis and I went shopping today and I landed my first pair of jeans, that look relatively cute, in 2 years. The best is the memory I will have for the rest of my life of my hilarious mother...2 babies (Amelia and her 6 month old cousin, Maya), 2 big strollers and a big mirror in the dressing room area at Chico's -- my mother pulling every song and rhyme she knows out of her hat...singing -- loudly, dancing and making a very big spectacle of herself, to keep the girls amused while Jackie and I tried on clothes with our poor, stretched-out-of-shape bodies. I walked out at one point and my Mom had pulled her scarf off and was playing peek-a-boo. OMG!!!! Soooo funny! Only a Bubbie/Mommy would make such an ass of herself in a public place for a smile and giggle.

We'll be heading to NJ for New Year's to be at Evelyn and Carlo's with Regina. Eventually we'll be back in the city and then Amelia will be out of this big ol vacation she's been having and have to get back to work. This little party's almost over! It has been luxurious therapy schedules to adhere to. Just us. I really love that.


Sunday, December 23, 2007

Merry, Merry!

I know, I know -- not my holiday. But I married into it soooooo....I get to get excited too! Nothing like Evelyn's Pernil(roast pork), arroz y condules (rice and beans), plantains and pastelillo (beef pie). YUM! I'm making banana pudding for dessert (Magnolia Bakery's recipe).

Anyway, rewind to Friday. Amelia was still not doing so well, she still sounded so congested, so I called the Pediatrician and told her we were coming over. Friday would have been her last day on the Zithromax and I wasn't satisfied. The Doc listened to her and agreed that she needed a new antibiotic (Augmentin 10 days) and prednisone (steroid 5 days). Amelia always does great on the steroids -- they just make her a little zany and hyper. She hasn't been too bad this time though. Big thing is that her breathing sounds clearer and she seems much more comfortable. I've actually slept the past couple nights -- a Christmas Miracle!!!!

So today and yesterday we've been hanging low. Just staying in and catching up on everything. Tomorrow we'll be going out in the afternoon to our friend's - Donna, Shawn and Darmia's so we wanted Amelia to rest up as much as possible.

That's the latest and greatest from us. Have a wonderful holiday!!!!

Thursday, December 20, 2007

When did it become okay... call a family with a handicapped child -- with hypotonia, CP and global developmental delays, who is medically fragile and depends on therapists with very specific qualifications -- and tell them that you, their Physical Therapist, are not coming to their house again? When did it become okay to to tell me that you'll come -- because I told you that it was unethical and unconscionable for you to call me on the day of an appt and just tell me you're never coming back to work with my little girl -- so you tell me you'll do the appt that day, then never show up and not call? I am furious. How dare someone do that? It's terrible when anyone does it, but for someone who has been working with you for months...someone who sits in your living room holding your child and says that "Amelia needs me. I won't leave her until we're skipping around the playground together." When does Amelia get a f*@#$!g break already? I know that Merna (PT) was opposed to us getting her a walker...but she has been opposed to every piece of adaptive equipment we've gotten for her -- so this is just another day at the office. The PT at UCP is totally supportive of this walker for her, feels it is appropriate for her at this stage (she was weight bearing and weight shifting when we put her into this walker at the UCP facility) and she deals with these things on an hourly basis. Merna is not based at a center like UCP and has very little knowledge of this particular walker. I showed it to her online when she came in on Monday and explained in a very conversational way that we feel, as Amelia's parents, that this is the right move for her. When she called to tell me she wouldn't be back...she told me that it was because her private clinic work is too much for her and she has to drop her homecare cases -- she absolutely denied that it had anything to do with the walker. This may be...but isn't it curious that it comes at such a pivotal time and sooooo sudden. I would respect her if she would actually fess up -- what a coward. She couldn't even face me again. And we've had therapists leave before. There's the ethical way to do it...and there's Merna's way. A professional would show to their appt with you and explain that they have other commitments and they will stay with the case until the service coordinator can find someone to replace them.

Poor little thing has been sick since Sunday. I was sick all Saturday. We all had our flu shots, but it doesn't seem to have stopped this fluey thing that has invaded my little girls' little defenseless body and won't go away. She's on Zithromax again, but it's not helping which means it must be viral. Uchhhh -- up all night and only the relief of one nurse yesterday -- who, by the way, was terrific and we're very excited to be having her with us on Wednesdays.

Since switching nursing agencies, the nurse yesterday, Rachel, has been our one and only. It's been a slow start but I like the idea of having several nurses that cover different days, rather than one nurse who is completely married to just your case. This way we have backups and flexibility.

We'll be spending x-mas eve with our friends Donna, Shawn and Miss Darmia Hope, then off to NJ for x-mas day. Hopefully we'll be meeting Spike's new girlfriend, Christina, on Wednesday and then heading down to Baltimore for a few days. We'll find ourselves back in NJ for new year's. OY, what a trek! I know after the new year we'll be closer to normal again...whatever the hell that is!!!

Happy Everything to everyone and here's to a HEALTHY and happy new year! Or as Nestor's Mom says, "Salud, dinero y amor!" (Health, money and love)

Friday, December 14, 2007

Nurse Shmurse

This has been a very bizarre week. After welcoming our nurse, Denise, back from her personal leave last week, she failed to show up to work on Monday morning. No call to me or the agency. Finally, Tuesday morning the agency heard from her. I was told that she would not be returning to our case. she informed them that our case is more of a babysitting case and she felt like she wasn't being properly utilized here. WTF!!!!!! Because Amelia isn't hooked up to ten machines and on oxygen or worse. What does she need? A critical care baby to feel validated? Amelia is, thankfully, in the rehabilitation stage. Her needs are still great, but unless she's sick (and believe me it's scary) she's not as fragile as she once was -- but a babysitting case? I wish. I wish I could just drop her off at babysitting at the gym or call someone to come and babysit her so Nestor and I can go out to dinner. I wish that were my life, this is not what we signed up for and how dare someone diminish what we do here everyday and night. I am in constant motion (as every Mom is) from morning to night -- but my motion is washing syringes and tubing. Making sure everything is clean washed out for the day. Whether it be a suctioning unit, feeding pump, feeding bag, restocking medical supplies or medications. Dealing with a very heavy therapy schedule, scheduling clinic and dr. appts. Worrying about things like that the letter to Con Ed is up to date so if there's a power outage they know we have a medically fragile baby with equipment that runs on electricity. Carrying around a 25lb. , 34 1/2 inch baby who doesn't help you lift her -- doesn't crawl, doesn't walk. We have no one here to help us -- JUST US -- SO GIVE US A BREAK! To leave us high and dry like that. Have the decency and professionalism to call and tell us why you're really not coming back. I know she had lots of personal things going on and I know people's lives and families come first -- I get all that -- but be a human being about it and communicate what's really going on. She waved goodbye to us Friday night and said "see you Monday."

So we've now left our nursing agency, Maxim and are now working with a new agency called Family Pediatric Homecare. I'm really looking forward to having some new nurses and new people to work with. I wish Maxim had been more up front with us and told us that they really have limited Pediatric nursing available, whereas this new agency ONLY does peds nursing. My friend Carrie uses them with her little boy and has been very satisfied, so everyone keep their fingers crossed for us.

So on another front, Nestor and I have been looking into the idea of getting a pediatric walker for Amelia. Our PT, Merna is vehemently against it -- she says she's not ready for it, but she was also against the stander and that's been one of the most important pieces of equipment we've gotten for our girl. So, we decided to investigate further and contacted the wonderful PT, Michelle at UCP NYC. She told us to come in and we could play around with the walkers she has there at the center. So that's what we did this morning. Success! Michelle said she is absolutely ready for a walker called "Smartwalker." Click the address below to view the walker and see video:

It's brand new and in defense of Merna, Michelle said that Merna has probably never even seen on of these yet they're so new. Anyway, it's very exciting! So she's going to call us and let us know when the next Smartwalker clinic will be at UCP, we go there, they fit her, and then we order it thru Medicaid. It's about 2ft by 2ft with a seperate full body orthotic that you strap her into. It goes from under her arms to shoes that hook into the metal bar that extends to the floor. There's nothing in front of her -- no bars to hold onto -- just open space. It's hard to describe -- but we're really excited about it.

Also, today Art and Terry (Uncle Artie and Titi Terry) came down from upstate and spent the day and evening with us. It was great to see them, we've barely been up to the house since it turned cold, so it had been awhile. We had a wonderful time and Amelia was adorable as she snuggled into Uncle Artie and giggled at his shenanigans. And Titi and I gave Miss A a warm, lavender fresh bubble bath which she thoroughly enjoyed, while the guys went out and got pizza. What a fun night.

Not much planned for the weekend, but Monday we meet our new nurse and nursing supervisor. We also have our new OT coming Monday -- so lots of big stuff happening next week -- we'll probably just hang in (as always -- but I love it!!!). I DVRed "It's A Wonderful Life" so that will definitely be on the To Do list.

Sunday, December 9, 2007

Another lazzzzy Sunday!

Amelia had a terrific week. Our nurse, Denise is back and we are so over the moon to have her back. I took advantage and did lots of fun things -- yoga, a movie (the last movie I saw in a theater was "Capote" last year), lunch and cooking. So nice to get out a little for some "me" time. (I saw "Enchanted" with Veronica and we had such a great time. Adorable -- all girls should see it -- together!)

Amelia is getting stronger everyday. She is so interactive and seems to understand so much. We all make a point of speaking to her in a clear way. Explaining what we're doing, where we're going, who is at the door (ie. which therapist is on her way up), etc. She has mastered the sign for "give me" and it makes our hearts melt everytime she uses it. I'll bring over a toy and ask her if she wants it and she'll sign "give me" or when I'm giving her tastes of purees, I'll ask her if she wants more and if she does, she'll make the sign -- it not, she won't . It's quite clear. Her teacher, Lilli has been the driving force in teaching her signs and modifying them so she can actually do them. It's amazing really. Our latest thing is that I growl at her and she laughs and squeals at it. Also, a heart-melting thing. It's just so incredible to see how communicative she is and that she really gets it, you know? One of our biggest fears has always been, and still continues to be, how she will react and respond to the world. It's still too soon to know completely, but we're very encouraged by her day to day -- hour to hour -- gains.

Nestor had oral surgery on Friday so we knew we weren't doing much this weekend. As it turns out, he felt pretty good and wasn't horribly swollen on Saturday so the three of us trekked to NJ to see his mom at his sis's house. It was a great visit and she and Carlo made a stupendous meatloaf -- so sweet of them -- knowing Nestor would be sore. He ate a lot of it -- actually so did I. YUM! Today Nestor woke up with the most swelling he's had so far(we knew day 3 would be the worst). Not terrible, but he wasn't going to venture out so we vegged out. I ran to the store in the AM while Nestor and Amelia chilled. Then, we watched a documentary on HBO, ate, napped and now I'm getting ready to turn in for the nite. What a tough life, right? Amelia was not interested in going to sleep and just finally fell off around 10PM.

This is our OT's last week with us and then she's off indefinitely for maternity leave. It's very exciting but we're sad to loose her. She's the only one who's been with us since we arrived here from LA. We have a new therapist in place, but Amelia's increases came thru last week and now we're searching for yet another OT to split the therapy with (the mandate is 5 days a week for 30 minutes -- a lot for most therapists to fit into their schedules, so normally you'll split it up so one will do 2 days and another will do 3 days -- very complicated) -- so we'll see how all of that goes. Wish us luck!