The Boulevard -- All About Amelia article

Quick update: had a terrible night last night. Fever at 103 all night. Almost went to the ER because of wheezing and high respirations at 4:30am, but she settled down and went back to sleep somewhat comfortably. Of course she woke up every 10 minutes with a cough or sneeze -- but we made it through the night and was able to take her to her pediatrician (civilized) this AM.

We were sent to NYU for a chest x-ray. It showed that her left lung is doing better, but her right lung is still looking not-so-good, so they changed her antibiotic and put her on Prednisone (steroid). Hopefully this will kick it! She seems playful but very pooped out. Cancelled all her therapy except for her teacher today. Figured she could use a little stimulation that wouldn't excert any major energy on her part.

This fall, The Boulevard (a society magazine based out of Long Island), came to our house upstate and did an article on Nestor and his work, play, past and present, life with Amelia and I. We just got the hard copy in the mail today. It really is such a well written, folksy article and I was able to find the online link.

http://www.boulevardli.com/DEC_08_09_Profiles/The_Boulevard_Profiles_Dec_08/Nestor_Serrano.html

Home & Exhausted

Well, Amelia pulled thru last night like a trooper and we were released at noon today. Our perky nurse Jessica pushed things right along and we were out of there. She'll be on 2 heavy duty antibiotics for 10 days -- one for bacterial pneumonia and one for aspiration pneumonia, as we're not sure which one she has and lots of breathing treatments.

No one likes to be in the hospital, but for a Mom of a medically fragile special needs kid, as far as supplies go -- it's kind of like Disneyworld. Stay with me here. When we're home, I spend tons of time each day keeping syringes, extensions, venting tubes and bedding clean with vineager and water/soap, etc. At the hospital, I'm constantly amazed at at the blase' attitude nurses and doctors have about equipment and supplies. Everything gets thrown out -- even if it's just opened and not even used. And nurses are usually all too happy to share the wealth. I felt like a kid in a candy store as we were leaving and Jessica asked "is there anything else I can get you?" I said "We-e-e-e-l-l-l-l..." I know I sound like a kook -- but I brought home tons of syringes, new bulb syringes, vials of sterilized water (great for giving flushes -- for the GT -- while travelling), etc.

When we got home I put Amelia on the playmat and I am telling you, if she had a jet pack -- she would have rocketed to the moon. She was on fire. Into everything and crawling all over the place. We were so relieved to see her playing. Her teacher, Carol came by to do a therapy session -- not expecting much, and couldn't believe how attentive and motivated Amelia was to play. She stopped at 45 minutes becasue Amelia was clearly losing steam. But man oh man, if you had seen her two days ago, you wouldn't have believed that she would have been able to sit and play with toys today.

Anyway, we're all unpacked and settled. I haven't really slept in about 5 days, so I'm enjoying a vodaka beverage that my husband concocted for me. Sleep tight all!

I take it back

...she was on oxygen all night. First by mask, then by blow-by. Oh well. She's off it now. If we have a good night tonite we get to go home tomorrow. Keep your fingers and toes crossed!

Yuck!

I am writing from Schneider's Hospital in Long Island. We came out here for the week to do Therapies 4 Kids for just the week and Amelia got pneumonia. It started Sunday night right after we settled in for the night at the Ronald McDonald House. We had our first HBOT dive scheduled for Monday morning at 7am and then on to T4K's for 4 hrs and then back to HBOT for dive #2. We made it in for 2 hrs of PT and our afternoon dive. That night Amelia seemed fine and Tuesday we did our early morning dive and 4 hrs of PT. She did great, but her ears were really red, so we didn't do our afternoon dive. That night her fever spiked and this morning her fever was gone and she seemed good so we took her in for a couple hours of light therapy. Well, she could barely keep her head up. Her respirations went way up and we took her home to give her a breathing treatment. After the treatment Amelia's breathing was still so bad and she was burning up, so at our NYC Peds. advice, we took her to Schneider's Children's Hospital, where we spent 6 hrs in a room in the ER, where they took her for a chest x-ray and discovered that she has pneumonia in both lungs. They were started an antibiotic IV and admitted us to a room upstairs. So here I sit. I have a very pooped little girl, who is very angry about the splint on her arm keeping her from moving too much -- so as to save the IV -- which took 4 sticks (pricks) to get. What an awful thing to watch as three people -- drs. and nurses stand around trying to get a little needle into a tiny vein. The cries and howls are pretty unnerving.

The really good news is that Amelia is so strong now that we didn't need to give her oxygen or suction her -- which tells us how strong she's gotten. So that's the upside of this experience. Sucks that we're here, but good to see how different this visit is than the last one -- which was just about 2 years ago exactly.

Girlfight

Hope everyone is having a long, wonderful Thanksgiving weekend. We definitely are. We started in NJ at Nestor's sis's house. It was an intimate gathering of his sister, Evelyn, brother-in-law, Carlo, Titi (Aunt) Luz, Grandma, Karena (niece) w/ bo, Jonathan, Spike w/ gal, Christina, Nestor, Amelia and myself. Dinner was superb, sheer perfection -- as always. With fabulous desserts provided by Christina's brilliant sister, Corrina (professional baker...see corinasconfections.com), Karena and yours truly.

From there we hiked it down to my folk's house in Baltimore. Last night (friday) we had a 70th birthday party for my Mom. We brought in our favorite restaurant, Tio Pepe's food, dessert and used their famed sangria recipe to kick things off. It was really wonderful. I haven't tasted that food since before Amelia was born. We never go out-out when we're down here because there's really no one to leave our girl with. Sooooo yummy! Had leftovers tonite too!

So this brings us to today. More precisely -- this evening when a girl fight broke out. Okay, I might be exaggerating slightly -- but it was cool!!!!! So, Nestor had been spending some quality time with my 17 month old niece, Maya and his little girl was not so happy about this. We were all just hanging out on the playmat...but Maya was getting books read to her and lots of Uncle Nestor's attention. Amelia was playing with stuff, but definitely keeping her eye on Daddy and Maya. Then, Maya took Amelia's little Mickey Mouse driving toy(which she was playing with). Amelia was not happy. Bubbie stepped in and gave Amelia one of Maya's babies (which she was NOT playing with at the time) and Maya hit Amelia in the face. Immediately, Amelia swung out and kvetched at Maya, but Maya's Daddy was quick to swoop in and take Maya into the other room. It was awesome!!! I know what you're thinking...but for us, we were amazed that Amelia stood up for herself. She never moves quickly and her swing was almost in slow motion -- but it was there and she was standing up for herself. We were so proud of her. NOTE: neither of the girls used any force here and no one was hurt at all. Just a little wounded pride.

The girls are friends again and all is well.

Amelia is particularly in love with her big cousin, Ezra(4 yrs. old) who is such a doll with her. He runs in and finds her. He loves me to stand her up so he can give her big hugs. She just laughs and laughs when he does this. He sits next to her and holds her hand or plays with toys with her (we're getting used to the sharing part of it) and is just so sweet. Amelia doesn't have anyone else in her life like Ezra. She doesn't have that kind of contact with other kids, special needs or typically developing -- and it's such a special relationship for her to have. I really adore Ezra for his blind acceptance of Amelia. It gives me such extreme joy to see the two of them together. Amelia is so lucky to have Ezra and Maya as first cousins. I know they are going to be huge influences on her life in years to come.

Putting it together

Footage of Amelia walking down the hallway at UCP.
Not the best quality, as it was taken from my phone...but you get the idea.

We've been back from Long Island for a few weeks now and we're getting back into the swing of it all. Amelia is moving a mile a minute. She can't crawl or squirm around fast enough(still on the belly, but now with her head up and grasping the concept of using her hands and elbows for leverage). All of us -- parents, friends and therapists are in astonishment everyday by the amount of things she is doing. Sitting up and lying back down is a fun activity! I have taken a liking to "wheel barreling" her around the apartment. You remember what that is? When you hold someone's feet so they have to walk on their hands. Yeah, she does that! Nestor and I can't even do that. So, it has become our pleasure to have a little girl who we have to watch each moment -- not because of her secretions (although we do that too) but because she is into everything. YAY!

So, on Friday we went to UCP to play with their adaptive equipment and decide what Amelia needs now. Her stander is too supportive, so we are ordering her a less supportive one -- which is half the size that we will hopefully be able to throw into the truck and take with us when we go up to the house or out of town. We are also ordering the gait trainer, which is shown in the video above, because she did so well in it. She actually walked all the way down that long hallway in it! Michelle, the PT in the video, was giving her input on her back and making sure the gait trainer didn't slide out from under her feet. Other than that, it's all Amelia.

We are borrowing the gait trainer (called a Pacer by Rifton) from UCP until ours comes in. We took it with us this weekend to Evelyn & Carlo's (Nestor's sister & bro-in-law's) house. We put Amelia in the Pacer and let her hang out a little in it -- and she walked across the kitchen. It was amazing!!!! We are so proud of her.

She continues to do new things with her mouth too. She has been sucking on her bottom lip still and pursing her lips together. Nestor and I noticed, oddly enough, that she tends to do most of it later in the day to evening. Don't know why. Anyone out there know why? We are into our second week with Amelia's new Speech Therapist, John. He is very sweet natured and calm. First day, Amelia was cool with him, second day -- a little more fiesty, by the third day and on, poor John is being given a run for his money. She is playing him like a 2-3 yr. old. He is incredibly tolerant, resourceful and is out and out trying very hard to become friends. I think he'll break through once they get to know each other a little better.

Tomorrow night will be our first Team Meeting for Amelia in several months. It will be very interesting with all the new people in her life. We are still searching for an OT -- so anyone out there who knows a fantastic OT who will work in the West Village -- let me know!

Tomorrow is also an extremely important day because it is Spike's Birthday! Yes, Nestor's little boy is all grown up. No longer a teenager -- he's going to be 20. I can't believe it. I met Spike when he was 10. He had never tasted raw cookie dough -- he was innocent. Now he's a Pre-med junior at Lehigh, with a beautiful girlfriend and has maintained his level headedness and sweetness. We are so proud of you and love you so much Spikester and know that the best is yet to come!

Thanks Jodi

Thank you for honoring me with your favorite blog award( see badges above). You are so funny and I think you are absolutely justified to give out your own awards.

For those interested in what I'm talking about go to http://rallycapsdotnet.blogspot.com/2008/10/and-blog-award-goes-to.html

Your not so bad yourself sweetheart! xo