Thursday, November 29, 2007

WANTED: Mary Poppins R.N.

This has been quite the holiday week. Where to start? My nurse, Denise called me on the Sunday night before Thanksgiving to tell me her daughter had been in the hospital all weekend and she wouldn't be in on Monday because she had to take care of her granddaughter. Monday turned into Tuesday, and Tuesday to Wednesday. Wednesday Amelia woke up with lots of secretions and throughout the day I monitored her temp. At 4pm, while her PT was working with her, she hit the wall and I got a call from Nestor that our PT was only going to do a half hour with Amelia because she wasn't doing well. I raced home from the pharmacy -- my one outing that whole week -- and sure enough, Amelia was in as much respiratory distress as she's ever been. We gave her a breathing treatment as her temperature climbed to 103.8 and her breathing got worse and worse. I gave her tylenol and motrin, called the doctor and we put on the Backyardigans for her. Her fever finally broke and she was drenched. Wouldn't you know it? She started to laugh at her cartoons and Nestor and I just kept putting on one after the other, after the other for hours.

The doctor called back -- not our regular ped, but one we had spoken to before. I told her the fever had broken, but we still had major concerns -- especially since the holiday was upon us and the doctor in the office had never met Amelia before. She said if another fever spiked, to bring her in on Friday.

I kept Amelia on tylenol and motrin for the next 24 hours, and although I was ready (albeit totally depressed to not be with our family)to stay home with our girl, Nestor convinced me that she was going to be sick here or there and we really didn't have to go for long, etc. Spike was in town too and I knew it would be a wonderful gathering. Also, Nestor's aunt, Titi Lu, who had never met Amelia (she is named after Titi Lu's mother, Amelia) was at his sister's place. We packed up the nebulizer, suctioning unit and everything else I could pack in, and we headed off to Evelyn and Carlo's for a wonderful Thanksgiving feast. Titi Lu and Grandma loved talking to Amelia and playing with her feet while she sat in the stroller. We explained that she was sick and not feeling like being held -- thankfully they understood. By 5pm, we needed to head out as Amelia's fever had been climbing all afternoon and we wanted to get her home. Spike came back and hung out for awhile, then Nestor took him home to his Mom's.

Friday we took Amelia to the Pediatrician, one whom we had never met before, but informed us she was "aware" of Amelia and her needs. She listened and looked and decided we should keep giving her treatments but hold off on antibiotics. She said if Amelia's fever spiked all weekend we should bring her in Monday morning and they would send us over to NYU for a chest x-ray. She also advised us not to go to Baltimore, as was our plan and just to hang locally.

Nestor again, I love him so much, could see how much this stressed me out -- as we had a very sick baby, I was totally sleep deprived and no nurse. Just the two of us against the world (my words!). He left it to me but encouraged the trip to MD. We left that afternoon and spent Friday thru Tuesday AM with my wonderful family down in Baltimore. We called our Pediatrician in Balto, who I've known my entire life(I was in playgroup with his daughter) friday night and he immediately put her on Zithromax. He couldn't understand why, with all of Amelia's high risks, anyone would wait for her to get pneumonia and then send her for a chest x-ray. Within 24 hours hse did a complete turn-around and was well on her way back toher old self. Anyway.....our weekend was really nice. Hanging out with my folks, sister, brother in law, cousins, nephew and niece -- so wonderful being surrounded by family! We were going to head back on Monday AM, but I got a call on Sunday that our nurse was going to take "Personal Time" off. Not available this week at all -- and not sure about the long term.

The agency lined up a new nurse for us for Tuesday, so I canceled her therapies for Monday and Tuesday AM and we came back that afternoon. You'd think this would all be a relief --- but no. Having a new nurse is really stressful -- and sometimes more stressful than not having one. Long story short -- I gave it 3 days and after two hours today, I told her it wasn't working out and I didn't think we were a good fit. I called the Agency and they informed me that they believe Denise is coming back on Monday. YAY!!!!!! I am soooooo happy! I know she must have been going thru some really big personal stuff to leave us like that. She's a really good person who has a tremendous work ethic and responsibility toward her patients. Even Nestor, who I think is a VERY good judge of character thinks this -- and is also very, very happy she is coming back. So keep your fingers crossed for us.

Today we had an Opthomalogy appt and we were informed that the patching we've been doing has changed the pattern of her eye muscles and now, instead of just patching her left eye for 2 hrs a day, we now have to alternate patching her eye's each day -- with Sundays off. So that's good, I guess. She's responding to the therapy.

Tomorrow we're off to meet with NYU's genetics dept to re investigate Amelia's mysterious challenges and what caused it all. Genetics had signed off on her in the first 10 hours of her life, but it's not uncommon to revisit these places as the child gets older. So, we'll see -- I still don't think it's anything genetic -- but I guess we'll go down that road again just to be sure.

And this weekend we're off to the house. Happy trails all and thanks for checking in to my long winded tale.

Sunday, November 18, 2007

Nice Weekend

It all started on Saturday...a wonderful day! We hung out in the AM, then headed out to NJ to see Evelyn (Nestor's Sis), Carlo (Bro-in-law)& Mom (Nestor's). As always, they made a delectable meal (we really need to start catering in meals for them!) and when we left their house we intended to go upstate to the house for the rest of the weekend. Well, there was snow and nasty weather in the forecast, so we made the command decision to come back to the city -- I had spent the morning packing for upstate and oh well, I spent the evening unpacking. The idea of getting snowed in is just too scary to me.

So, today we just hung out again. Took a couple of walks in the frigid temps and made a big breakfast and dinner. Amelia and Daddy had some photo ops on the playmat this afternoon. Precious!!!! Hope everyone has a terrific Thanksgiving -- lots of love and stuffing! xo

P.S. And most importantly -- HAPPY BIRTHDAY SPIKE!!!!!!! (on Monday)

Friday, November 16, 2007

Welcome to Holland

Some have seen it, some have not....It's an important poem to me.


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sunday, November 11, 2007

A new cry

This weekend Amelia has shown us a new cry that pierces our ears and had me freaking last nite. It's loud and strong, not with real tears (although tonite I saw a couple) and she just rolls away from me and pushes the sound out like when a kid is just at their limit and wants ...something...that they can't tell you because they can't talk yet. It's wonderful! It didn't freak me out as much tonite when she did it, but it definitely wares on you after awhile. It's that normal thing that most parents have been dealing with since the beginning -- but Amelia has never had that kind of strength or, I guess, motivation. We really do think that the supplements are having an effect. The nutritionist had mentioned that the piracetam can make kids cranky -- well, I think we know the answer to that now. She's been waking up from her naps (not all) crying this newfound cry. And dinnertime, she's showing us she's hungry with her newfound cry. It's just the beginning, we hope, for this newfound awareness. So exciting -- and exhausting!

Thursday, November 8, 2007

She has so much to say!

This week we have seen lots of changes -- and it's hard to know whether they're real or we're searching so hard for it...or if it's just normal development. Who knows? Here's what we do know -- in the past several days (she's been on the vitamin E, Piracetam, phosphotidylserine (sp?) and green magma (it's just for fiber and nutrients -- but I just like saying "magma") and she has been very, very vocal, reaching a lot more and very active. These supplements are called brain enhancers or smart drugs. Each therapist and our nurse, Denise have noted the differences -- so perhaps it's not just in our heads. I promise to keep everyone posted on the progress.

This evening Nestor and I went to a school fair for schools who have programs for kids with special needs. It's a little premature but I wanted to go because I want to know what's out there. It's amazing what's available to these kids -- special classes, sensory gyms, therapy programs in house, integrated classrooms...we have no idea where Amelia will be when she ages out of homebased EI (she'll be 3 yrs, 8 months old) so we'll have to look more seriously later. Example, one we were really interested in is Roosevelt on W. 34th Street, it has 5 classrooms with a max of 6 students per classroom -- a nurse, PT, OT, SLP, and Special Ed teachers on staff. the sweet woman we spoke to said that Amelia sounded just like one of their kids (many schools have less medically fragile kids). Literally across the hall, under the same umbrella, is Gramercy, which has integrated classrooms that are a bit larger. This means that, if appropriate, Amelia could start in Roosevelt and if we felt she was moving past that program, she could transfer to Gramercy. Anyway, we have time to look and consider...and there's another fair on 10/ on and so on.

Saturday, November 3, 2007

Halloween Wed...Feeding Clinic Fri...

Wednesday was Halloween. We hadn't planned on dressing Amelia up -- Nestor's not a huge fan of dressing up kids before they are part of the dressing up process. He feels it's the equivalent of dressing up your dog...anyway, the day before I started to feel the need to do something. I decided to use her own clothes (so it's not really a costume) and put a couple of the pipe cleaners I use to clean her tubing in her pigtails...and voila! She was her favorite cartoon character -- "Uniqua" from the Backyardigans! She was so adorable and kept them in all day (she had no idea they were there!).

So, yesterday, we went to St. Joseph's Feeding Clinic in lovely Paterson, NJ. We were met by a team of people: a PT, ST, and a couple Drs. We did a feeding session behind a one-way mirror, the PT came in and evaluated her. Then Dr. Eiker, the big cheese came in to give us her thoughts. This clinic is obsessed with output -- if you get my drift. They want their kids to be extraordinarily regular, and then some. The thought being that if you have a full feeling all the time, you are less likely to want to swallow and that your system could actually be producing more secretions because of a slow digestive track, blah, blah, blah. It all makes sense and it's a very different approach than we've had before. Dr. Eiker recommended that we change her food to a whey based formula -- which I explained we would be happy to do after I've gotten her new supplements (the piracetam, Toddler DHA, Vitamin E, etc) regulated. She also mentioned cutting her feedings into smaller portions and giving her more of them throughout the day -- I think my face must have gone red and irritated because she backed off of that pretty quickly. I've practically killed myself to get her onto 3 feedings daily -- and then to find a therapy schedule where she has had enough time to digest...and nap...and the therapists, who have killer schedules, can make it here...OY, NO WAY! She said we could just try changing the food first and see if it makes a difference in her secretions and digestion. Overall it was a good visit and we'll go back 3-4 weeks after we've transitioned her onto the new food. I think if we didn't have such a wonderful team thru EI, it would have been even more enlightening -- but our PT and ST are so terrific, I'm not sure that I really felt they brought something new to the table. I will say, they were very specific that we should be doing tastings with her at each meal, 5 minutes to start, and very regimented, so she knows what to expect each feeding. I've been pretty good with the tastings, but i don't necessarily do it at each meal -- I feel like she's sometimes too sleepy or cranky. Their opinion is to DO IT. Even if there's barely a drop on the underside of the spoon, just give her a flavor and not really any volume to work with. So we will.

Today we trek up to the upper west side to see our dear friends Darmia (2 1/2 years old and Amelia loves playing with her), Donna and Shawn for an early supper. And tomorrow, we head down to Lehigh in PA to see Spike and his friend for lunch. And Monday is my darling husband's birthday! I've convinced him to give Atkins a day off and we're going to venture out and find the best pizza in NYC! We'll let you know if we find it.