4th OF JULY, SMA CLINIC & OPHTALMOLOGIST

The weekend went on being uneventful. We celebrated the 4th of July dressing up for the occassion and enjoying a good dinner. We all watched some cartoons and make the most of the simplest pleasures in life that most take for granted.

This has been a positive events week. During Monday I got ready for the next busy days, resting and surrendering to some spa pampering. NursePerinette and Mommy braided my hair, so my pinkish alter ego is back. Gosh, I am really liking this look.

On Tuesday I had my appointment at the SMA Clinic in the Columbia University in New York. I dressed up, and was ready for action. The trip over there was a breeze. This time I had a wacky, crazy, fun entourage. I was quite amused with the tales about motorcycles, about people, and just enjoying the view to the road. I don't get out much, so I really like to look outside the window pane. I love the movement, and feeling the bumps of the street... It is so fun when the ambulance goes up and down! (Yes, I go everywhere in the ambulance, I need to be in a stretcher since I cannot sit down... but hey, the best part is that I get to be comfy with pillows all around me!). We arrived a bit early, so we did not have to rush too much. We went on to the 5th floor, and soon a lady assigned a room for me... big enough for all of us. Yup, I have quite an entourage... Mommy, Daddy, my nurse, the paramedics, their nurse... It is really nice having all this attention. :)


Anyway, the physician and the neurologist saw me, and then the PT and their adaptive technologies person, and the nutritionist. The pulmonologist was not there but I didn't need one (Dr.Bach saw me in April, so no biggie). We got some contacts that we need to check out along with Tracy's contacts so we explore my gaze selection possibilities. That is what will be the focus now. Everyone was happy to see me doing so well. And so, that trip went to an end. We arrived back home and we all celebrated with Popeye's chicken (ok, I celebrated with Elecare, but you get the idea). I was too tired, I had an instant nap.

Today, NurseMisheila woke me up to do the whole respiratory session and bath on time. We were expecting the ambulance again. This time we headed to Belleville, to fulfill an appointment with the ophtalmologist, Dr.Wagner. Wow! We were impressed with the fast and nice service. I had to be plugged outside, and then the assistant doctors came and surrounded me. They did everything there. I got some drops in my eyes, and everything became so blurred! They said that my eyes had been "dilated", and that my sight would be fine in a few hours... I was completely clueles... And I even got a bit worried... But Mommy and Daddy kept talking to me, so I knew I would not be in trouble. Half an hour later, the doctor arrived, checked my eyes up, and assured us that my eyes were doing fine. He mentioned later on I may be a bit near sighted, but that for now things are ok. The slight tremmors in the eyes are due to my lack of muscle control, nothing else. And with that, we went back home.

I listened to some music, watched a Princess sing along, and then had a nice nap. All this excitement is taxing, so rest is mandatory. I know the rest of the week will flow smoothly. So... easy... chilling... learning... and enjoying priceless times with my beloved family. Life is sweeeeeeeeeeeeeeeeeet!

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NEW FACE: FLOWER POWER!!!

As you may notice, my diary has a new look. Out with the hearts, in with the flower power! Things move fast in my life, so now the blog moves as fast as I do. Wheeeeeeeeee!

So... What's new? Well, I have been listening to my Wonder pets in Spanish, getting intensive flash cards learning drills, and keeping up with my daily routines. I have been making it clear that I want to be in my controlled environment (my room). The heat outside is too much when you have to do breathing workouts as I do, so I rather do everything in the comfiness of my crib.

Last week everyone came, almost at the same time. The PT, the OT, the Speech therapist... We are all trying to bring more ideas of what else can be done for me, but right now it is all stuck. I need my wheelchair so I can advance even more! Hopefully it will arrive sooner than I expect, as I can barely fit in the stroller. sometimes I need to go out in the wagon, positioning myself with a wedge on it, as the heat and the positioning doesn't help me when it comes to the stroller. I guess that one will soon return to its owner. It was great while it lasted. On the brighter side, at least the bed should arrive in August. Just in time for my birthday!

Last Thursday daddy was really upset as my MicroLight switch appeared with a broken cable. We have no idea how that happened, hopefully it can be repaired... It is ironic that just when we get the adapted computer mouse to try the switch with it, and just when we returned the loaned switch to the library, now we don't have the switch... Something always happens. Anyway, at least the mouse is here as well as game programs just for me (thanks to Tracy and her "people"). I know that the switch thing is a problem whose solution is in process. Hopefully the computer will help me communicate and learn even more, even faster.

This week Pat came with a new take on helping me increase eye gaze coordination/decision making with my eyes. She brought foamy shapes, and Mommy and Daddy put them together showcasing shapes. When placed in a board, and highlighted by a flashlight, I follow the light. Yup, Pat was pleased to see that I do pick up really fast on what I have to do. Well, I know I have many skills that they don't even suspect, but unleashing them so everyone can see I have them is the difficult task in itself. I get frustrated... But I don't give up.

I have been feeling good and very happy. I've been smiling a lot, and being attentive to my therapists and nurses. what I do enjoy most is when there is no one else around, and it is just Mommy and Daddy and me. My favorite thing is to be placed on their bed, it is so soft and comfy! Watching movies all together is so much fun! Nothing can feel as good as having their attention. And I definitively know how to do that, making them run on an instant, and then smirking. I love you Daddy! I love you Mommy!

Today, Mommy braided my hair with the pink extensions, so I'm divalicious for the weekend. Next week will have even more excitement as I'll visit the SMA center on Tuesday and then the ophtalmologist on Wednesday. I'm looking forward to the center, so I can explore more OC and PT options. What I need to plan now is an appointment to see a dentist. Those upper teeth need to be checked up.

July arrived so fast! In just one more month I will reach the 2-year milestone. It is incredible, and amazing, all the things that happened ever since I was born until now. Time is running out, and each day I can truly give testimony of being so blessed and having so much love in my life! And it all is just getting started!

God: Thank you for the gift of Life, for my ever vigilant Mommy and Daddy, for my Godparents that never forget me, for family and friends both seen and unknown. You have sent many angels to help me out, and to perform so much work in Your behalf! Please help all of those who are ill or lonely. This time I ask you to grant healing for Ally, so she and her mommy can go home soon. And for all of those who have earned their wings, grant them peace and eternal happiness rejoicing in your presence as well as grant serenity, courage and peace to the ones that stay here on Earth. Help us all become better by doing better. Take care of us, always. In You I always trust, my Good Shepherd.

Amen.
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FATHER's DAY AND THEN SOME MORE

Summer is here, and I am really enjoying it. I can't get out to the living room as often as I would because it is a bit hot for me (yes, anything beyond 85 is hot for me, I am a heated oven like Daddy). Nevertheless, I manage to stay in my crib being placed in different positions thanks to pillows and wedges.

Between Mommy and Daddy's creativity and the nurses's follow up I have been getting some new skills! Yup. Now I am listening to the Wonder pets in Spanish. Wow, it took Mommy forever to figure that one out... Las Mascotas Maravilla sound really weird... It uses Spanish from Chile... but it is cool. After all, I have to learn to speak my main language!

So, it is intensive learning drills with the Spanish Wonder Pets, and then the Spanish animals flash cards, and the Spanish clothing flash cards. They even got me an English-Spanish pictionay! Come on, people, get a grip! I'm not even two years old!

I have also been hanging around... literally. Everyday they hang my right arm, then my left arm. I know, the main idea is to get me to move something. sometimes I do, sometimes think about it... All in all I like this hanging business. I get to practice with the MicroLight Switch and my butterfly and my smashing monkey.

Last week I was a rocking success with my pink hair. I gotta give the look a break, so this week I'm into being a pineapple. I like to have my hair as if it were exploding. Just keeping things fun!

Last Sunday was Father's Day. Mommy prepared a special dinner for Daddy, and we all got to be in the comfy big bed while watching my show. Wow, that was a delight! I love the big bed! And all the cushions! And the A/C and all things hanging in the ceiling! It is a whole new world that I love to revisit from time to time... Erm, well, I could stay here if they stay in my crib, no problem!:)

Today the technology lady from early Intervention passed by to give Mommy some information about eye controlled switches, and to take the mouse so it is converted (for later computer use). When the wheelchair arrives (hopefully soon) then Mommy will go full throttle on exploring those...

The Speech Therapist is scheduled for tomorrow, and I hoe to see my PT and my OT soon. This week won't have too much hassles. And so far, I am doing great. NurseMesheila noted that I was dripping too thin because of the humidifier... It had not occurred to us we actually began using it in full winter, because of the cold, and with this hot climate that is not necessary. So now my numbers are more like they used to... not perfect but getting there!

And so, that has been my latest adventures. No big dramas, and everything flowing smoothly... I love it when a plan comes together! God always takes care of me, sooner or later He shows off! :)

A big prayer for all those sick kids, for the ones that earned their wings, and for all of those who have no home. May God look over all of them as well. Amen!

PINKY DINKY DOO?

So, here I am, in the living room, thinking "Hey, I have a BIG idea... What if I could have a taste of divalicious funkyness?". And using my psychic powers, I compelled Mommy to do something to my hair... Who knew? Now we actually match. Well, Mommy's hair is red, and mine has pink, but you get the idea. Am I fabulous or what?

This past week went away REALLY fast. I don't know what's going on... Well, among all things... I've been reinforced into Spanish as mommy is reading my flash cards almost everyday. She wants me to be as bilingual as she is... She keeps saying "spanish is for poetry". So, nurses teach me English, and she teaches Spanish. Do I have a words salad in my brain? You bet! Animals here, animals there... In the farm or at el Morro.

The week had no newsflash. It was all quiet and nice. Some hot days made me have to stay in my room, but then the coldest days allows me out. This week no therapist passed by. I've been doing well, and the main focus of the week has been putting my arms in the custom swing that daddy built, to help me enhance some arm/hand movements. The weekdays are great with the nurses that are coming Mon-Fri. I guess that's why days are flying: I'm having too much fun.

I've been chilling in the weekend. AuntieVangie sent me some cool stuff, and everything fits just right! I feel like a "fashionista" lately, wearing all these pretty dresses. Love this hearts dress, cool and comfy. We are all so happy, as we got news about the electric bed. It got approved. Now to wait for it. Hopefully will be here before Christmas! :P

I'm asking God to help so many kids that are not so lucky as I am, kids that are waiting for a family. So many are nameless, but others have names: Paul, Julianna, Christopher and Ariel. Special needs kids are often abandoned... It is very sad. They need love too, and so many people forget about them... Well, I don't. I pray to God that someday there won't be any abandoned kids left alone in nursing homes.

I also pray that the cure for SMA is found soon, so many angels can actually stay here on Earth, and grow up giving so much needed love to everyone. I know prayers are powerful... That's why I am alive. Let's pray for health and happiness, and for peace.

A new day, a new chance to truly live. And to share love.

Amen.

SMALL TRIP AND GOOD NURSES

This was an easy, breezy, beautiful week.

I went to the Technology Center to try out a stander. Woah! I was put in an almost-standing position, and surprised everyone with how tall I am! Yup, 3 feet tall. I loved it. The trial stander was too big for me, but the purpose as a trial was fulfilled. It will not be the brand I get, as they decided there was no point to having a stander that goes into sitting position. The thought behind that is that I’ll get sitting trials when I get my wheelchair, plus it will make it more feasible for insurance to cover (that vendor is REALLY getting on our nerves… each time he opens his mouth it’s just offensive). Anyway… So, it was all settled, and they will send for a Buffalo stander. Hopefully it will be approved and will arrive by Christmas…

On Tuesday, Pat passed by and we did some of the old exercises (always checking and trialing my developmental skills). This time I decided to cooperate, so she was very happy with what I can do. There, I made another fan happy. Yes, I select with my eyes. Yes, when you say a word and give me a choice of flash cards I know which one is which especially if it is an animal card (I love animals). Yes, I use my big fat thumb when I want to with the switch… it is just difficult to know what I’m doing if I don’t see it and it takes perseverance and overcoming my getting bored and annoyed to actually find a position that may work for less than 5 minutes… And yes, I love it when people read me books and show me the pictures (especially when it’s mommy or daddy… they are silly! They do this teamwork when reading… moving plush dolls and puppets and making me feel so happy and so loved).

On Wednesday the family psychologist was updated with all the plans and what’s been going on, especially about my progresses and the frustrations of waiting for my equipment so I can actually go ahead and make progress. Yes… the waiting game is so unnerving and tiresome! Everything is wait… The bed is in process for approval, the wheelchair is in process for approval… The stander ditto… We are crossing our fingers on all that, so I finally get what I need. My crib is getting too small for me (I’m a giant baby!) and the stroller that another family lent me is beginning to be too tight/small for me (so I always look like I’m hovering on it!)… Yes, I actually need my wheelchair ASAP. I wanna be able to at least visit a boardwalk or a zoo or the aquarium… An outing besides going to doctor appointments would actually be so nice!

On Thursday PT-Ellen passed by, and we did the mandatory exercises again. We read a book, used my fingers/thumb, and fall asleep… Sorry! I was fussy all day long, and mommy was thinking I might be getting a bit sick. At night I was well, but did not want to get to sleep… not even while watching Fantasia! I wanted to p-a-r-t-y!!! Yup, you got it right! I even started doing strange sounds with my mask. Well, mommy and daddy put an end to the fun, they changed the mask’s position and even the vent to make sure that everything was fine… Geesh, I was just having fun! Well… Back to being bored, I finally fall asleep… early in the morning…

Friday has been a bit of a hassle. I had a bit of fever in the morning, but NurseMisheila took care of it. The afternoon has been a breeze, watching Tinkerbell and being just chilling in the crib. Since I am not feeling so fabulous I’ll stay in my room today. No biggie, A/C and pillows and food and Tink… I’m all set!

God: Thank you for so many blessings! Thank you for helping mommy and daddy cope with so many things! Thanks for sending my way these new people who are caring so much about me! Thank you for keeping me strong and smiling! You have blessed me in so many ways! Let me do Your will, and show everyone that You are there and that You make Miracles happen Everyday! Protect and heal all kids that need you, above all those who have no one to care for them. Amen.

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!!!