It's been almost two weeks since I last wrote, though I've updated here and there on the Team Mona Rabiosa Facebook page. So updates have been coming in no matter what. The main reason for my inability to update as soon as I want to is because Nayelis' new obsession is my laptop! She no longer cries for the iphone or ipod. She now asks for the "puter" so she can see videos. I swear I think she's really 13 in the body of a 3 year old! LOL
A lot has happened since my last update.
I remember thanking everyone for the support we received at the ANC Dinner/Dance Benefit for Nayelis. The photographer did an awesome job with the portraits. If anyone is interested in seeing and ordering portraits, you can go to: ANC portraits & click on event login. The password is: caring.
Second picture is myself with my mother, siblings and Nandiel.
Third picture is Omar's grandmother, aunts, uncles, sister and Nandy & me.
All the portraits were amazing!
So on Day+17 , exactly a week ago, Nayelis' ANC kicked in with a 0.1!
Today, Day +25, the ANC is 5.4!
The doctors are very happy with Nayelis' progress and the way her counts are coming in. During rounds today, the doctors informed me that they were going to take away the Zyrtex that was given for her itchy palms and soles of feet. They are also going down on the steroids and per PCA pump (the fentanyl/pain medicine). They are stopping the TPN (nutrition) for a certain amount of time during the day to see if it triggers her appetite. So far she is not interested in drinking or eating, but the doctors say that it's still early. Just to keep offering her food/drinks.
Right now her IV pole has four pumps on it, and countless of meds hanging. Tubies coming everywhere. When I see that the pumps are being removed, and the pole is becoming scarce of meeds, then we will know that the its getting near that time to go home! Well, not Home home, but Ronald McDonald House home for the time being. Anything to release us from these four walls is good enough for me.
So two weekends ago, Omar came up with Nandy.
We asked the nurse if Nandy was able to come up to the door to see Nayelis, since he was not allowed to go in the room. The nurse said it was ok! So Nandy came to the glass door and when Nayelis saw him she became so excited! They gave each other five, with the glass to separate them. They are so close though, that not even the glass come in between their bond!
Omar and I switched so I went to the Ronald McDonald house with Nandy & Omar stood here with Nayelis. Nandy was so excited because I was going to be sleeping with him that night. Nandy & I took a ride in the "yellow cars" like he calls him, and went to see The Lion Kind 3D that night. We returned to the House and before he fell asleep he said, "I am so happy because you are sleeping with me." The next morning we went to have breakfast in a lil ' cafe and he goes to tell me that I am the best mommy in the world! It's the little things that count and I cherish!
After that weekend,
Nayelis was receiving (and still is) all kinds of packages because her birthday was on 9/29!
Everytime she sees mail for her she becomes so excited! Thank you to every one who has mailed her a card / package! On 9/29, I wrote:
Three years ago, I was blessed with a beautiful baby girl, as healthy as can be. These last three years she has taught me so much like how to be strong, and fight no matter what the circumstance. That just because you are given a challenge, it doesn't mean that you stop smiling. You look up the word soldier in the dictionary, and you will find a picture of her. Thanking God for choosing me to be her Mommy ♥
It was Nayelis' 3rd birthday, but she wasn't happy. She slept most of the day, and was quite grumpy most of the afternoon. Not sure if it was because she was aware that it was her birthday and it wasn't going to be like priors. Doctors said that it could have been the steroids because it alters a persons' moods. She had visitors all day long! First, my sorority sister Mari came to visit with presents, which Nayelis LOVED! Then, Beth from Friends of Karen came by as well to wish her a Happy birthday. One of Nayelis' doctors, Dr. Lo, that took care of her at Yale also came by, but Nayelis was sleeping at the time. MSKCC's child life also came with balloons, a happy birthday banner, gifts and an ice-cream cake! In the evening, my sister Lourdes, friend Mari, Omar & Nandiel came by and we were able to sing Happy Birthday to her. But, she didn't want us to sing. :( She learned a new phrase: "I SAID NO"! and she used it quite often that day!
As you can see from all of the above pictures, Nayelis ALWAYS has a smile on her face! No matter what day it is. She can have a bad day, but that smile always remains on her face. Many of us can learn a thing or two from her! =0)
As I write this, she lays there with my phone in hand. She's figured out how to go to the Netflix application and then how to look up her favorite shows. She's quite amazing. She's watching the TV at the same time. She's a multi tasked, and a future model.
Tried taking this picture of her without her noticing, but as soon as she saw the flash, she looked at me and gave me the biggest smile ever!
Just a reminder, for those of you who are interested in the Team Mona Rabiosa bracelets:
You are able to purchase them through Pay Pal. There's a link to the left side of this page.
Or you can mail a check to:
Team Mona Rabiosa
c/o Yvette Velez
27 Omega Street
Bridgeport, CT 06606
Well, Let me not push my luck here. She's eyeing me already. I think she wants the laptop!
Thank you all for your continuous thoughts, support & prayers!
God bless you all!
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