Saturday, March 28, 2009

Ever feel like you've been hit by a mack truck???

It's Saturday morning. I've been up with Amelia all night long. She's sick...big surprise. That's protocol for kids when they start school, right? She has tons and tons of secretions. I've been suctioning and wiping nonstop since around 4pm yesterday.

But let's backup. Wednesday Amelia started school. It was very exciting. Nestor and I drove her to and fro this week...looks like that'll be happening next week too, until they get the paperwork finished and her nurse in school can ride the bus with her. They're different contracts for the nursing agency -- the Dept. of Transportation (DOT) versus the Dept. of Education (DOE), yadda, yadda, yadda.

So, when we walked into the lobby of the bldg. with Amelia, all these women were getting off the elevator with strollers to bring up the arriving children from the buses. They all saw us (about 8-10 ) and rushed up to us cheering "Oh my God, is this Amelia?"and so on. That was it. I wanted to take her stroller and run the other direction...but I didn't. I just got very filled up and thru a clenched smile -- holding back a floodgate -- I squeaked out a very weak "yes." I was so emotional and I didn't think I'd be, because I am, truly, so excited for her to start school.

Also there was her new nurse at school, Toni. She's a sturdy, young woman with lots of personality and smarts -- thank goodness. She seems to really get it. Amelia will be sharing Toni with another little boy in her class. He is so cute! What a handful the two of them are. But there are only 7 children in the class (uh, eh-hem...Miss Amelia is the only girl -- what a Princess-- by the way, that's what Toni calls her) with a teacher, two assistants, another child with a one-to-one, another child with a nurse and Amelia and the little boy with Toni. Lots of extra hands around to help out!

Amelia's nurses, Keisha and Lia came with her this week just to get her adjusted and train Toni in Amelia's routine. Toni did great and I feel confident that she'll do great next week when Amelia is all hers. I was there somewhat, but got kicked out each day by them to go to the gym and let them situate Amelia without Mommy being too close by:( Overall, Amelia did really well this week. They did lots of circle time and books. She had Speech, Occupational and Physical Therapy in school this week and all her therapists seem knowledgable and terrific -- with lots of exciting ideas and goals for Amelia. She did fall asleep each day at school, which is fine, as she transitions into her new schedule. Not much napping after school, but definitely having a wierd time adjusting to her new life. She'll get it, I have faith -- but of course, I know now...that she has also been getting sick the last day or so.

So, yesterday morning I noticed she had a lot of stuff coming out of her nose, but blamed it on allergies. Not so. After school was a whole other animal. Keisha tried to take her out and she had a total meltdown. So she brought Amelia home and we put her into her crib, where she fell asleep for a little while. When she woke up, it was like the floodgates had opened and her nose hasn't stopped running and the coughing and sneezing has been endless. So I'm hoping that she gets it out of her system and will be better by tomorrow so she can go to school Monday. Oh well, I guess this is the life.

Also, on another exciting note, Amelia has 20 Res. Hab. hours a week thru her Medicaid waiver, which we have never been able to fill -- could never find the right person and yesterday...we did! So wonderful. This woman, Jossette, came over with our MSC, Karen from UCP and we fell in love with her. Jossette is smart, she works within the special needs community at YAI in Brooklyn (Amelia's school Roosevelt is also YAI) and wants all the hours. Even with Amelia waking up a miserable little monkey yesterday, she wants all the hours -- YAY! So, the paperwork needs to be done and then Amelia will have new friend here every week. We're very lucky.

And to round it up -- Nestor came home on last Saturday and it was great to have him back. It's been a really hectic/stressful week, so we haven't really had any real time to "take in" each other being around...but we will.

So everyone please send healthy thoughts our way.

Also, wanted to note...Happy 1st Birthday Sebastian. Sorry we'll miss your party today. Peanut butter and jelly sandwiches with cake and ice cream sounds scrumptious! I also think your Mommy, Veronica is really cool. Food for thought: Veronica sent out invites keeping the party on the DL and letting friends know that it's cool to come without a new gift. She asked for recycled toys if you had them. I think in the spirit of today's economy -- that was such a classy move by you! Thanks for being so thoughtful.

Saturday, March 21, 2009

Wednesday it is

Allan & Amelia -- action shot
And yes, I cut her hair this week

Yep. The paperwork has been signed and Amelia will officially start school Wednesday. And not a moment too soon.

Her Speech Therapist, Keisha said to me yesterday when she got here "I have some bad news..." and I said "Stop. Stop there...Amelia is starting school Wednesday." To which she replied "Oh, thank goodness because another feeding case came up and blah, blah, blah..." You get the point.

Also, as I sit here blogging, Allan, Amelia's PT is doing his very last session with her:(( So sad! We're going to miss his sweet smile when he walks through the door twice a week -- which makes Amelia light up and laugh too. Happy trails Allan! Those lucky kids in Florida.

So it's crunch time as we transition into school. I am still looking for a Speech Pathologist and Occupational Therapist to come to the house after school hours, 2x60 (just putting it out there for anyone reading...perhaps has some ideas...hint, hint!). Other than that, we have almost everything in place. Except I still have to label everything -- clothes, bookbag, feeding pump, suctioning unit, medical know, the normal stuff for school. Tick tock, tick tock!

And on a very happy note, Nestor is finally coming home tonight after being in LA for almost 2 months. It will be great to have him back -- even grumpy and jet lagged. YAY for Amelia and me!

Friday, March 13, 2009

Out of Town

Amelia and I have taken a little trip to Baltimore to visit the family. We've been in the city without Nestor for about a month and a half, so my Mom came up Tuesday and we drove down to MD on Wednesday. It's been really nice to be around the family and all the tumult that comes with it. My sister's kids are bursting with energy and they both love Amelia a lot. It's really great for her to be a part of that. I don't want to brag either, but my little niece, Maya, learned to say my name yesterday (without the "Aunt" part -- she's not even 2 yet...she'll get it eventually) and has not stopped saying it. No matter where I am there's her precious little sing-song voice saying "Deb-bie", to which I reply "Ma-ya" and she smiles the biggest smile I've ever seen and says back "HI" with a wave. So sweet. I'm not sure what Amelia's take on all this love and interaction is, but she's somewhat competitive with Maya, so I'm hoping it'll spawn a little communication somehow. We'll see.

We're still working on getting her into school ASAP. We've gotten all the paperwork from our Dr. in to the Board of Ed and now it's just waiting to see what they decide in their assessment for nursing. We already know they have to approve it. The school nurse at Roosevelt has out right told me that Amelia's care is too much for her to do herself and she will definitely need a nurse to vent her g-tube and hook up all her feedings, along with any nebulizer treatments she may need during the day and so on. It's all just a wait and see game now.

On top of everything else, I got a questionnaire for Jury Duty in Orange County (that's where our house is, even though we live full time in NYC because of Amelia's needs). Unbelievable! So I had to call her Pediatrician and get her to do a letter for me explaining that I'm a full time caregiver to a child with special needs. When it rains, it pours, I guess.

Tuesday, March 3, 2009

The Tired Twinkie Defense

I had lunch with my girlfriend, Veronica today and she told me a great story. Her cousin, Katie is the Mother of four under 5 years old, with the youngest at 16 months. As you can imagine, she's exhausted all the time. Sounds familiar, right? Katie's husband is one of those egocentric physicians who thinks he is a God and she is a nurse.

So, her 4 year had been pretty sick, but it was the baby (16 months) who got really sick and they took him to the hospital. His glands were really swollen so they did a battery of tests. When the blood work came back, the baby tested positive for mono. Uhhhh...mono? How the....

Then they tested the older son (4 yr.old) and he tested positive for mono.

So Katie, decided she should probably be tested and guess what people? Yes, Mom had mono -- for three months. Katie was vindicated -- she's not a terrible, neglectful Mother-- but exhausted to the point of: the baby's crying and she cannot get out of bed and just wants to check into a hotel room and sleep for a week. Turns out, she's been carrying this around (unfortunately gave it to her kids) and now knew why. Her friends had told her she was depressed. The husband thought she was just getting off easy and shirking her responsibilities.

So, the moral of this story is...I think we should all get tested for mono -- that's why we've all been so tired and irritable since we had kids!

FYI: The bonehead husband's reaction to finding out the reason his wife had not been herself all these months was "Well, I hope I didn't get it. Maybe I should get tested." OH PLEASE! Get over your bad self!!!!