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.