WELCOME BELLY-BUTTON OF THE YEAR!

Yup, good times are rolling allright! These last two weeks have been blissful, quiet, fun, blessed... You name it. Just what I needed after such a bad start of the year... Summer days are coming, and the days are warmer and cozy. Much better for me, I look forward to many good things!!!!

Ash doesn't stay behind when it comes to show off while looking pretty. Here she is posing, as usual, ready for action. Yup, she's just like me... Cute... All that, and smarts too!

Mommy changed the tree. Well, about time! The easter eggs dropped off, and rubber duckies all dressed up ready for summer action appeared! We have pirate duckies (male and female), luau duckies, scuba duckies, beach duckies... And to make sure they are all playing safe, we have heroe duckies! My, those are really cute! (But not as Ash or me, of course).

This is one of my favorite dresses, white and blue. I love this dress. Everyone compliments me on it. It brings out the blue in my eyes... I know... Wow, and it also goes with my face mask! Talk about accesorizing!

Well, breathing is an exhausting task for me... I can't believe mommy would actually hint at me napping all the time. That is not true. I only nap once or twice a day... OMG! Where are the producers? Take this picture outta here!

See, this is more like it. Yup, I LOVE the Wonder Pets. I think there should be a whole TV station dedicated to them... and a musical in Broadway... Yup. And a whole big store of stuff about them. Ming Ming, I LOVE YOU!!!!! Linny, YOU ROCK! And took, GIMME A HUG!!!

Here's Daddy reading to me at night. Granny Edna sent me some books that I'm putting to good use. I love books! Especially when Mommy and Daddy do the puppet shows that compliment them. They make me smile a lot!

And here is a close-up so people think I'm insane like DrEvil or something... Mom!!!! Sheez, where are the producers when you need them?!

Well, anyway... What is new? Now I have a new nurse for the second shift, three days of the week, Mon-Wed. She is very very tall! And very very gentle. She seems to be a good choice for the evenings. She reads to me, plays with the flash cards... You know, low impact afternoons... much needed as my dear NurseMisheila drains me with so many activities during the day! Mommy and Daddy likes that, but geesh, give me a break! Exercises, cards, switch toys, more exercises, treatment, more cards... Learning, learning, learning... Can't they see I'm still a baby? Come on! For Thu and Fri we are still on trial with another nurse. We'll see how that turns out. She seems to be nice too. And after all that is settled, then the weekends will be assessed.

Nothing else of note... Pat passed by, Ellen passed by, Evelyn passed by... All are the therapists. Most were sick earlier... So I'm glad summer is here. To shake off those bad bugs!!!

I thank God for the simple, happy days. I need to gather my strength so I accomplish much more! Little by little... The teamwork around me is really working. I keep praying for those kids that have been sick, and those who have gone through operations to make their lives better. And I pray that God grants us kids and our parents plenty of courage and strength to keep on battling as we do every day... Amen.

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HAPPY MOTHER's DAY!

Here's a small scrapbook about our Mother's day. Enjoy!

Although Mommy woke up a bit late (5pm) we managed to surprise her with good food and being all dressed up. Yup, she had to dress up too. I love these small gatherings! Catch a glimpse of my red shoes!

Here I am with Mommy. Yup, I am getting a big too big for her to hold me for long... Nevertheless it always feels so good when someone hugs or holds you! I get nervous when I'm not in the safety of my stroller or in my crib, but I know Mommy and Daddy hold me tight!

Oh, of course Daddy had to be silly! The day would not be complete without him making me smile. It is always fun to grab his nose (hard to miss!).

Here I am, being stalked by a crazy pirate puppet... Sheesh!!! He is always hanging around, all the time. Yup, that is the embodiment of my Godfather, Sti!

Am I lovely or what? I look good in this dress. I selected it from the bunch, I wanted to be pretty to surprise Mommy. She loved how I looked... Divalicious!

Here's Mommy and Daddy and even Ash. We all made sure that she would smile. We have many happy moments.

And here we are, the three of us... I love my family. We are always together, and we make things work. It shows. :)

Now,to a small recap on everything that happened since my last post! Well, last week was very slow... Mommy was focused on her programming course as she had a final project due on Friday, and so Daddy was taking care of me for most of the time. I love when he does. He's so silly! He always makes me smile. This weekend was Mother's day, so we secretly planned a nice meal of Mofongo for Mommy. We all dressed up, prepared the living room for the special occasion, and pigged out with the food! I may have only smelled it, but at least I tasted a bit of mango ice cream that Mommy put in my lips. Yummy!

Timing was not so right, and the microwave oven collapse under the stress... rest in peace... Daddy had to get a new one today, hope it arrives soon... Something always happens!

Besides all that, this week we will have some visitors. Hope that the team gets back into action!

I thank God for giving me such a good Mommy. I also give thanks for my grannies and my great great granny... I know they all love me so, and are always praying for me. I wish I could see them and give them a big hug... I know that we all have to be patient, and deal with things day by day. I keep hope that soon we will be able to go back to the island, where friends and family surrounds us. Being so far is almost like being exiled... At least love has no boundaries. I miss you Millie, Gladys and Edna! Hugs and good wishes to you all! May God help you, protect you and give you the strength to wait for my return. May God keep on blessing my life with so much love and caring. Amen.

PS Hey, Godfather! Mommy took a pic of me and the small vodu doll that represents you! Did you found yourself in the scrapbooks? :) I don't forget the people I love. Kissy kissy to you too. Hugssss!!!

LMN, NEW NURSE and MORE WONDER PETS

Mommy woke up being busy today. She spent the whole morning working on a detailed letter of medical necessity so I can get the right bed. Hopefully that will work. She sent it to my doctor, and now we are waiting for the outcome. Hopefully this will setup things so the Medicaid doctor stops being confused.

In the afternoon, we got a call that a new nurse was coming. Well, she arrived a bit late because she got lost. But strangely enough, something about her made Mommy get off the computer and go into my room to actually meet her better. Seems she got a good vibe, one of those 6th sense things she gets sometimes. Well, so far from what I heard (yup, I was feigning being busy with my Wonderpets but oh, I was listening to everything!), seems this one may be a keeper. I have the feeling Mommy and Daddy liked her. One thing is certain, I would really like to meet Yu. I’ve heard so much about him! I hope Carlitos don‘t get jealous back in the island.

Tomorrow, one of my favorite PT’s will come early. Boy, is she in for a surprise! NurseMisheila has been making me practice using the switch with my butterfly and even the monkey for the whole week! Yup, that Misheila is insane. She sings, she reads and reads and reads, shows me the flash cards, makes me move… Doesn’t she get I just wanna watch my shows? Gosh! Now I am forced to cut back on my precious hobby… What the world is coming to!

This has been a happy-go-lucky week. I even got some chinese orange sandals and a nice printed dress… Oh, and I almost forgot to mention it! I also got a Wonderpets t-shirt! That was the icing of the cake! They make me so happy… Each night before going to sleep, Mommy tucks me in with my three pillow-friends (Linny, Tuck, and Ming-Ming too). Yup, and then she reads me an awesome book where they go and help baby animals go to sleep. Yup, they sleep too… So we all go to sleep, and dream about adventures and teamwork! Yup, we are soooooo brainwashed! And we all love it. Mommy sings the song, and Daddy, and yup, me too!

It’s the little things in life that makes it so much worth it!

IF YOU WONDER ABOUT WONDER PETS

Well, this should give you an idea of what is what... And why Miss Deedee loves it. This is sewious!

SUNNY DAYS, SWINE FLU ALERT & PT's

The week has been a bit slow. At least today I had some excitement as I had two visits. The PT came in the morning, and then the OT came in the afternoon. Not that I have not done my exercises anyway, my day nurse gives me plenty of exercise, and reads to me, and shows me the flash cards… Yup, I get complete happy service while that one is around. We are joking around about cloning her, but who knows… desperate times call for desperate measures! And, really… It has been THAT hard getting to find someone like this one. I hope she sticks around for long. It is stressful enough handling crazy nurses in the afternoons if and when they come… Right now it’s off to the basic one day nurse, the other one that began last Friday didn’t make it after 3 days. Sometimes it feels like the company doesn’t listen to what we need… Well… we gave her time and we were patient… but you can handle someone that won’t talk or look at you? Gosh!

So, back to the therapists… PT session went well, hopefully she saw I have been busy working my muscles. The OT seemed a bit down with my lack of moving/grabbing too much. Well, since the long hospital stay THAT has been something we’ve been working on. Not that I don’t try doing anything. My strength is not too strong… I’m hoping that the L-carnitine starts helping me soon, at least giving me morte energy to keep trying.

At least everyone is noticing that I’ve been happier lately. Smiling more, trying to be more cooperative… You know, making my followers happier… Hey, if they are happy, they talk a lot to me, and read to me, and do more stuff with me… You know, it’s all about me! :P

Summer is hitting hard. Cold days followed by extremely sunny days and now drafty days… This weather is plain crazy. I prefer the stable sunshine in mornings and rain in the afternoons from my little island. At least you know what to expect. Here it’s all a big surprise… But, I’m coping in style. Mommy and Daddy found out some cool clothing so I keep on being divalicious in style. And even NurseMicheila pitched in bringing divalicious thinguies for when I am bigger. I am certain that there’s no way I’ll end up in What Not to Wear.

The wheelchair is in process… I have my date for stander selection in Monday. And now the thing with the bed drama is taking new shape… Don’t know if for the best or the worst. Well, Mommy got some info about a bed that is perfect for me, and that is more affordable than their old pick. Now we hope that Medicaid won’t start making a drama out of it… It was great to hear that this manufacturer has many SMA customers. Seems this is the right choice, as you are a face and a name, not just a number. Stay tuned and watch what happens…

The thing about the swine flu shivers me timbers! I’m so scared about it. But I know Mommy and Daddy are vigilant. It’s all just scary… Heck, even the common cold is scary for us…

God: Thank you for so many blessings. Thanks for a family that sticks with me no matter what, that cares for me and that loves me so. Care for those kids who are abandoned, who are alone on their own… Let them feel your presence, inspire them to know that Life is worth it. Protect them, and heal everyone that is sick… Guide us through the night. Keep watching over us. Amen.

HIP X-RAY & PEDIATRICIAN CHECKUP

Today we went to Children's Specialized. I got a hip X-ray done, as I needed this to actually move forward to get a stander. Well, that was done, I'm more radioactive than ever. DrArmento showed them to Mommy and Daddy. Yup, I have the typical displaced hips you can expect with low muscle tone. Do not worry too much, it is what we expected anyway, it is normal on SMA kids. Nothing else besides that, so everyone should feel confident in moving forward towards getting my stander. The doctor just told us I have to stand like a super heroe (or military person at ease) so i have no problems. Piece of cake! (Oh, of course he doesn't know my secret identities as Wonder baby and Super Baby! Shhhhhh).

DrVelickovich, the pediatrician, checked up my weight and my ears. I'm perfect, thank you very much. Lungs are clear, and it is evident that my people take good care of me. Yay!

Tomorrow my people will call the Technology Center to move on with the wheelchair thinguie, and the stander thinguie. We are also in the process of getting the medical bed I need for my overall care (yes, I'm sinking in my crib and it doesn't help in anything at all!).

NurseMisheila seemed a bit sick yesterday and today, so Daddy dismissed her both days. Hopefully she will be completely well tomorrow, I miss her sillyness.

And that's exactly how it all hapenned... The End. :)

Oh... I almost forgot! OMG! Yesterday there was a Wonder Pets premiere! They saved the Lockness Monster! Way Cool! I got so excited! Well, me and my people! This show is so awesome! You gotta watch it! Really!

Latest Checkup: DrBach

Yesterday went to see DrBach as I had a checkup appointment. The transporting/ambulance team arrived just in time and were surprised to see me seated in the stroller. I was about to get my feed, but that had to be postponed. No biggie, I was not THAT hungry. The day looked a bit murky, but it was ok. I strained to look out the ambulance's window. So many houses! So many things moving! So many things to discover! I wish we could make many stops so I coud actually get to enjoy every view... Oh, well... We arrived at the offices building, and then a small adventure took place. We played Where's Doc? Yup, somehow we lost track of where we had to go, and oddly enough the people in other offices had no idea of where the NIV center was... or who DrBach was... Incredible... In the end we finally got a hold on him, and went to the 3rd floor.

We immediately went on to my appointment, no time to waste. This time Lou and a lady from MDA were there. Everyone keeps on being surprised by my beauty and my growth. Yes, I'm just 20 months... Yes, I have bewitching eyes. Yes, I am very smart. And yes, oddly enough I am able to do little BIG things like breathing on my own for short periods of time (like 4-9 hours, depending on my mood and on the weather). Lou went on to test my breathing volume rate, which was at 100. Everyone was very happy about that. While DrBach talked with Daddy, Mommy talked with the MDA lady (Megan, the program coordinator). Oddly enough turns out that of everything Mommy has filled up, she didn't fill up a registration with MDA. So Megan will do that and send information later on (just like FSMA). From what she told Mommy, sounds like FSMA has done an outstanding job at giving the services that MDA offer as well. I guess that's why it didn't occur to Mommy to enroll me in MDA. Well, the more options, the merrier. So that's done too. The visit ended in a happy tone, until next appointment in 6 months.

It was sprinkling a light rain on the way back home. I was looking sleepy, and almost fell asleep. Upon arrival, and being placed in the stroller, I knew that I would have my food and my favorite show on TV, so the sleep spell went away. I watched a prehistoric animals documentary (loved the otter ancestor!) and then Pinky Dinky Doo. The afternoon ended, night came up and finally I was catching some Z's in my crib. I'm happy things are working out little by little. Today I just had my behavior specialist visiting me. Tomorrow the family psychologist will pass by (mainly to talk with Mommy and Daddy). And on Thursday is my next outing: Children's Specialized. I'm going to have a hip X-ray to see how my hip bones are (to see if I FINALLY get a Stander), and then to checkup with the pediatrician to weight me and to see what she has to say about the medical bed that I need.

God keeps looking out for me, sending so many guardian angels! Life is good.

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