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Thursday, February 26, 2009

Ch-ch-ch-changes

There are so many things happening these days.

Photo by Tina Guiomar

Nestor is still in LA. Making the best of a slow pilot season.

Amelia is moving closer and closer to beginning school. We are putting the finishing touches on her paperwork. As it turns out, rather than getting into a long drawn out fight with the Board of Education over providing a nurse for Amelia during the school day, her new school, Roosevelt, stepped up. As it turns out, there is a little boy, similar to Amelia -- g-tube fed, suctioning, nebulizer treatments, etc. His family is going through the same process as us. They are neck in neck to start school. Roosevelt looked into their budget and decided that they are going to hire an LPN for Amelia and this other boy. The two will be in the same classroom of 6 children and the LPN will be there just for the two of them. It's like having a huge gift put right into my lap. Now we just have to get her busing and after school therapies in place and we're good to go -- just about.

I'm having issues with the insurance company now. because we won't be using 40 hours a week of nursing, they are essentially telling me that old addage "if you don't use it, you lose it." So now they're doing another medical review to try and reaccess Amelia's need to have her nursing in place, regardless of whether we use it each week or not. There are going to be days that Amelia will be home sick...and chances are I'll have been up with her all night -- if Nestor's out of town -- that's not a good recipe. There are always tons of doctor's appointments to go to and i will need help with those too. I keep trying to explain that because of Amelia's $2 million lifetime cap on her insurance, we've been looking forward to school so that we can cut back on nursing to try and save the less than $850,000. we have left until she's 18 years old. Most of her specialists don't take Medicaid, so when she exhausts her primary insurance and the Medicaid kicks in, we're going to have to find all new specialists (Neurologist, Pulminologist, Opthomalogist, ENT, Pediatrician, GI, Surgeon and more). Anyway, we have really compassionate Case Managers on it, whom I have good relationships with.

That's Lia holding Amelia at her Birthday party this year, in front of Lia is her son, Everton playing with a balloon. Smiling at her is the lovely Keisha, Amelia's other nurse who will be with us until "we tell her to not to be".

And lastly, the saddest part, it was Lia's last day with us today. She's been with us for over a year and she is the one person, in the world, who would come in here 3 days a week and meticulously take care of Amelia. She calls Amelia "her baby from another mother." Lia would call the next day if Amelia had been sick the day before...or if we even suspected she might be coming down with something. She was the one that Amelia would turn to, with arms up, to save her when therapy got too hard or she just wanted to cry or be held. Lia was a master at restocking the supplies, thoroughly cleaning and rinsing them. She knows each and every sound, noise, sneeze, wheeze and cough Amelia makes. Lia was with us each time we made the trek to Long Island for therapy and help out in every way possible. She knew Amelia's schedule completely and was always on top of when, how and where a feeding, therapy or diaper change took place. Lia came in each day with a big smile on her face and a million stories about her crazy kids and co-workers at the hospital where she worked when she wasn't here. When we told her Amelia was going to go to school she was so happy for her, but knew she would soon be having to find another case. Instead, a position at her hospital opened up and because we thought Amelia would be beginning school the first week in March and this position started the first week in March -- she thought the timing would be perfect. We had no idea that we would have the delays we've had because of the in-school nursing situation. I am so happy for Lia that she is off to this good position. She's always talked about going back to school and this would be the perfect opportunity for her (when you're full time at a hospital they'll usually pay to send you back to school). But I am so sad for us. There was a real comfort in knowing I would see her 3 days a week. We have promised to keep in close touch (she's a friend on FB) but it's always different. The end of an era for us. I am so grateful to have had her for the year, she will never know how much.

Saturday, February 21, 2009

Lemonade Award

Just received the Lemonade Award from Ellen over at "To The Max".

Thank you Ellen. I am honored.

She bestowed this award upon me for the following:

"I hereby bequeath this to the following bloggers, who have an amazingly optimistic attitude and a whole lot of spirit."

I will try not to disappoint.




Thursday, February 19, 2009

Addicted

I took the plunge yesterday and joined FACEBOOK. I have been obsessed since. I've reconnected with so many old friends from high school, college, etc. I even found a group for the theater camp I went to when I was 16. A few friends have been messaging me constantly and posted some photos of us from when we were 13. SO FUN! I can barely tear myself away from the computer to go the gym for an hour -- but I have been because I'm also a little obsessed with my daily 6 mile runs. I feel out of balance -- but that could be because I donated blood yesterday and went out for an early happy hour this evening.

Anyway, the really good news is that tomorrow AM, we're getting our new wall-to-wall carpet. Tonight I have to lay down the matting that goes under it (from Wal-Mart -- good stuff). I can't wait to get back to our morning routine of walking around the apt. I've been doing some, but this will give me a safer feeling to go wherever I want with Amelia safely.

She's been doing really well this week. Lots of "Give me's" (sign language) for everything. Lots of laughing and reacting to people, TV, letting me know when she's had it, etc. We started therapeutic feedings again. Her new Speech Pathologist, Keisha is working on getting her to strip the spoon and she picked it up really quickly. We've always given her food on the underside of the spoon. What Keisha does is put the food on the spoon normally, puts the spoon in and closes her lips around it by closing her jaw with a finger under her chin. Genius! Makes perfect sense. Amelia's really has responded to it and is picking up on. Tomorrow Keisha and I are going to the Lending Library at UCP to get some Augmentative Communication Devices for her to use. It should be a very cool intro for Amelia.

Gearing up for the Oscars. I know I'll never stay awake for it. Nestor's still in LA. We usually go out and get lots of good eats & drinks and gorge ourselves. Oh well, probably better to not do that this year anyway. Did I mention that I've now lost 25lbs?

Friday, February 13, 2009

Dancing Queen

Amelia is doing much better. Her tongue is still slit, it has a coating over it. She has tons of secretions draining out but and I'm now able to brush her teeth again -- gently! I'd say Amelia's up to her old tricks. Just this morning I caught this footage on my cellphone.

See for yourself.


video


Friday, February 6, 2009

HEALING & WALL TO WALL CARPET


Well, we're on the mend -- both Amelia and Mommy. Her tongue has a white film (like a skin) over the ripped open area (so painful looking) which, I guess, is the body's way of healing itself.

And I, well, I am healing too. I'm cutting myself a little slack. I still haven't walked her to her chair for breakfast, and I'm not walking her by the hips for awhile (which is where I was holding her when she fell) but by under the arms -- which is a lot of support, but oh well! That's where I am right now.

I just finished an appt for a free in home estimate from Empire Carpet -- found a lovely frisse' carpet with lots of golden/copper/brown tones and am meeting with another guy from Popular Carpet in a half hour. We're going to lay down more of the matting we got from Wal-mart (really good interlocking stuff for about $24.00 per 6 pack) and put carpeting on top.


My folks are coming up to NYC tomorrow for the weekend, which will be really nice.

Tuesday, February 3, 2009

And the terrible Mother of the year award goes to.....


I'm not feeling too wonderful at the moment. Amelia and I woke up this morning...like any other morning. I walked her to her stander, gave her her breathing treatment while she watched cartoons, walked her back to the crib and got her ready for her breakfast feeding. And as I always do, I began to walk her to her feeding chair. But this morning, she wiggled and wriggled and lunged away from me and fell onto the tile floor smashing her mouth into the floor. There was so much blood. I was freaking out. I didn't know what to do. I called my Mom -- crying and yelling into the phone that Amelia fell on her face and she was crying and bleeding a ton. My Mom was so calm and cool (years of experience) and told me to dial 911. I called 911 and the extremely nice woman on the phone got all my info and told me help was on the way. Meanwhile, I put Amelia into her chair, put her cartoons on which calmed her down somewhat and got a clean towel to look closer at her. Her tongue was sliced apart about a quarter inch on the right side, in a cane shape. So horrible and bled sooooo much. I got a buzz at the door and it was two police officers from the 6th Precinct downstairs and our landlord, Bruce . I'm crying uncontrollably and running around like a madwoman trying to put together her tubing and extensions in the diaper bag, along with fresh clothes that aren't blood soaked. It turns out that one of the officers installed Amelia's car seat for us in the Lexus. They were all so incredibly kind, helpful and wonderful.

The EMS arrived and everyone helped us out to the ambulance. EMS asked which hospital we wanted to go to, so I told them NYU because all Amelia's docs are there. So that's where we went. I called Lia, Amelia's nurse, to tell her to meet me there instead of the apt. When we got to the ER they took us back very quickly.

The doctors looked at her and told me that they don't do stitches unless the tongue is completely sliced in half or if there's an artery involved. The bleeding had pretty much stopped by then and she fell asleep. so they wrote me a prescription for Amoxicillon (to stop any infections in the wound) and sent us home.

As an aside, I have to mention that I was asked, about 10-15 times, what happened? As I explained, "Well, I was walking Amelia from her crib to her feeding chair, like I do every morning-" "Is she ambulatory?" asked the ______. " "Well no" I responded, but it's carry over of therapy. We walk or crawl her, so she gets the sense that she isn't being carried everywhere-" "I see" says _______, with a look of skepticism on their face (actually, it's probably not skepticism, but I'm feeling so guilty, I think it must be). And I started thinking to myself "Oh my god. Are these people going to hold me accountable for this? Could I get into serious trouble for this? Could they take Amelia from me? Maybe I shouldn't be so honest about what happened..." and so on. How awful that we live in a world today, where on top of all the other things we have to deal with, this line of thought came barreling through my brain at a time where all I wanted was to hold my baby girl and take all the pain away.

Everyone has told me that "it looks worse than it is" (and it looks SO bad and SO painful, trust me) and "don't beat yourself up, this is what kids do" or "these things happen" and I appreciate the sentiments, but I had her. I really had her and it happened so fast. Every time something like this happens it sets us back so much further.

I have been thinking a lot lately about how far Amelia is from eating. Actual eating...and speaking. We are really no closer today than we were a year ago, two years ago. She's three. She fatigues after 3 swallows of less than half a spoonful of thickened baby food. She doesn't say one audible word or babble on her own. We dealt with not having a speech therapist for four months, heavy-duty pneumonia and now this. Again we are in the "no feeding" zone. It sucks.