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!

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.

Tuesday, October 30, 2007

Big things could be afoot!

Amelia is on the mend. We put her on Biaxin last week and we're on our fourth day of no suctioning. Whew. Always the lovebug -- Amelia has shared her latest cold with me. I'm feeling pretty terrible, but also on the mend.

We had a terrific weekend with my folks. They came upstate to the house with Elvis (my first "little responsibility" before Amelia came along -- he's a blind cairn terrier with diabetes who now resides with my folks -- poor little guy, but I think he remembered the house). We spent the first couple days inside because there was terrential rain. On Saturday night Amelia refused to go to sleep. After arguing with her for 45 minutes, we brought her downstairs to watch "Wild Hogs" with us. She made it thru but fell asleep 20 minutes before the end (10:20pm). By Sunday it was beautiful and we decided to head out to Westpoint for a tour. The bus tour was on a school bus -- first come, first served. Nestor explained that we have a handicapped child, so they gave us headsets and let us follow behind in our car. What a ride. We weren't sure how this was going to play out -- but our girl was a dreamboat and just stared out the window enjoying the view and playing with her feet (did I mention she can't get enough of her feet -- the most fun toy ever!) When the tour concluded we headed to Highland Falls, the town right outside Westpoint and found a really cute, little, extremely festive Mexican Restaurant. We hooked up Amelia's feeding and ordered a fiesta of food for ourselves. Really good! From there we went to Brotherhood Winery (the oldest winery in the USA and about 3 minutes from our house). My Dad, Nestor and I did the wine tasting while my Mom distracted Amelia, who by that point had had enough site seeing and wanted to go home and roll around on her playmat and play. We finished and headed home where Bubbie and Zadie hung out with Amelia while we got dinner together. Titi Terry and Uncle Artie also joined us for a lovely dinner of burgers, salad and pasta salad with babka and berger cookies for dessert. Monday was sad. We spent the morning together and then headed our separate ways. They went back to Baltimore and we headed back into the city for her first therapy at 1pm.

At 4pm yesterday, Nestor and I had a conference call with Kelly Dorfman, a nutritionist from Potomac, MD who was recommended to us thru Dr. Frielich, our Developmental Pediatrician. We had a very enlightening conversation and left with four supplements to try with Amelia. They are all brain enhancers and she's had great success with some of her other kids with CP. Peracitam, Toddler DHA, Vitamin E and Phoshosphatidyl Serine. We bought the Vitamin E yesterday and ordered the Piracitam online (it's from England) and I've left messages at a pharmacy which may be able to help me with the others. She gave us very specific brands and amounts. We're very excited about the prospects but also know that we shouldn't get too excited...yet....

Tuesday, October 23, 2007

Still sick...

Amelia was up a lot last nite and spiked 102.7 temp, which broke by 6AM. She woke up early and fell asleep just before her speech therapist arrived today (how convenient). Called the Pediatrician early this AM, only to find out our doc is walking a marathon in CA, but was assured one of her partners would return the call. Of course they called during the one hour that I ran to a yoga class (which was way after I called). Anyway, couldn't get him back on the phone and called each hour until I was finally told -- "oh, he's seeing his last patient and will call you back when he's finished" to which I responded, that on my first call that morning I was very specific in stating that I wanted to bring her in today to see someone. OH. So, I finally spoke to the doc who listened to my tale of her spiking fevers a few days apart and has been sick since last Thurs. He told me to bring her in and someone would see her. Cancelled her afternoon therapy and we - our new nurse, Denise, Nestor, Amelia and I piled into the car and drove crosstown in midday traffic. We ended up seeing one of the partners who we've seen before. She's terrific and gave me an antibiotic prescription for her, but we decided to wait 48 hours to see if it's just viral (if she's still sick in 48 hours, we'll know it's bacterial) before giving her the meds. It's hard to tell where she is because you can see she's just feeling lousy overall.
She's had so many changes recently too and taken them all in stride. An increase in services, a new nurse and...Mommy got a funky new haircut!

Monday, October 22, 2007

Runny noses suck!

Poor little thing has been sick since last Thursday. Was up with her all nite Friday, fever, breathing problems -- all of it. She finally fell asleep around 5AM Sat. morning after a breathing treatment and slept until almost 9AM. Her fever was gone when she woke up. Yay!
She seemed to be handling her secretions really well until last nite, so I finally pulled out the old suctioning unit. We've only suctioned her a few times, but it doesn't seem to help too much. I'm not sure if she should be on something, maybe she has a sinus infection? I'm going to call the doc tomorrow if she isn't substantially better.
Anyway, our new nurse, Denise, is wonderful -- very sweet and mothering. Amelia has been in good hands with her.
This weekend was really terrific. Nestor and I saw our dear friend and actor extraordinaire, Shawn Elliott on the closing matinee of "Night Over Taos" at the Theater for the new City. It was great to get out and see some live theater. Then, Shawn came over to the West Village between his shows and we all, including our Amelia, had a visit at the restaurant across the street from us, Cowgirl Hall of Fame (don't worry Mom, she was warmly dressed and comfortable and we were only there for an hour -- and she had a good ol' time!). Then on Sunday, our friend Richard came by to have a little lunch (and brought a delectable tort).
So, despite her cold, Amelia was in good spirits and got out a few times to enjoy the delightful weather we've been having. Next weekend my folks are coming into town and we'll be journeying up to the house upstate for a few days. Really looking forward to the fall foliage. And perhaps taking our girl to a nearby farm for her first pumpkin.

Thursday, October 18, 2007

In the Right Direction

It's been three weeks today since we suctioned our girl and it's so incredible. She is really learning to handle her own secretions and what she can't handle we facilitate with positioning and a bulb syringe (just like all the other kids!). Our lives are less complicated -- still dealing with tube feeding of course, but not shlepping around a suctioning unit is like an early Birthday gift. I'm nervous about the upcoming winter, but we'll deal with it day to day.
I made an appt at the St. Joseph's Feeding Clinic in Patterson, NJ. They're supposed to be the best and my friend, Carrie, who has a son very similar to Amelia, and is an SLP (Speech & Language Pathologist) highly recommended we take her there. She said that because we haven't suctioned her for so long -- it's time to get a strict feeding regime going. It's very exciting.
We've been doing therapeutic feedings with her, but she's tending to get it stuck it stuck in the front of her mouth. It's a coordination problem, but before it turns into behavioral/habit, we need see how to correct it. Our SLP thru EI (Early Intervention) is fantastic, but she is not a specialist -- so she is right on board with us to make it all happen.
Well, it's feeding time here at the Serrano house -- gotta get the girl out of the stander and into her positioning chair -- just another day at the office.

Tuesday, October 16, 2007

The Basics

My husband, Nestor and I live in NYC. I have been married for 5 years. We have a 20 month old girl, Amelia and my husband has an 18 year old son, Spike (a nickname). They are both amazing kids and we are so lucky to have them.

Amelia was born full term. Normal pregnancy, but I had an excessive amount of amniotic fluid. We suspected something amiss. At birth, I noticed she didn't cry when she came out and when they handed her to me -- she was going thru the motions but no sound came out, also she had no rooting reflex. Very scary.

Because of the amniotic fluid situation I knew she was going to be taken for some tests before they let her feed. That turned into 2 1/2 months in the NICU. Amelia had a g-tube placed at 1 month old. Developed severe reflux, so they did a fundoplication, pilora plasti, hiatel hernia repair and internal replacement of the g-tube at 2 months old.

She is hypotonic, with tracheomalasia and has a working diagnosis of Bulbar Palsy, which by definition is a degenerative disease associated with ALS.Which means she has a very weak swallow and no suck, therefore, she is g-tube fed, but the frequent suctioning of her nose and mouth has thankfully fallen away and it's been almost 3 weeks since we've had to do any of that ..Amelia is progressing wonderfully and the diagnosis, in her case, was really just a way of describing her weaknesses -- but as we all know, docs love labels if they can find one. They believe a schematic episode happened in utero. We've had every test, scan, MRI, EEG, EKG, etc. done and everything has always come back normal.

She is really thriving these days. Colds always give us a panic and slight set back, but she is the hardest working baby I know. With therapy up the wazoo (PT 4x30, OT 3x30, SLP 3x60, Special Instruction 4x60) she is making huge strides. We recently got a stander for her and it has made a world of difference in her strength -- really learning to bear weight into those tree trunks of hers! We had a swallow study done in June of 07 and although she is still micro aspirating on honey thickened liquids there were no signs of nasal regurgitation! YAY!...she hasn't had aspiration pnuemonia in over a year, so the recommendation has been to give her therapeutic feeds using .5MLS of purees (we use stage 2 baby foods and I sometimes make my own) and she has shown wonderful progress here too. Trying to coordinate breathing and swallowing is very hard for her.

She is moving like crazy. Reaching and grabbing at everything. When put in the right position, she'll push up onto all fours and she's letting us know her likes and dislikes, without question. She tells us how she feels all the time -- but we're still waiting for our magic names to be spoken from that precious little mouth. but we'll take the smiles, laughs and high fives until then.