BUSY DAYS, PEOPLE & GIVING THANKS

After my trip to the Zoo I was quite beat. I used the rest of the week to catch my breath and rest. Last week I saw so many people! On Monday the new speech therapist Jamie and my old friend Tracy passed by for an assessment. Jamie got the complete recap about who I am and how is it that I’ve beat the odds so far. It was a happy evening! On Tuesday 17 I went to take a hearing test. My pediatrician wanted to make sure that I hear well… and well… I do. The trip was quick and uneventful. On Wednesday 18 there was an overload of people coming into the house. Well, mostly to see Mommy, but still… I haven’t see so many people since Thanksgiving two years ago!

On Thursday19, PT Ellen and OTMaya passed by for a brisk session. RTPeter passed by as well, with a newbie that was in training. They changed one of my ventilators and took the bad small battery backup for replacement. Finally, in the late afternoon, we got a gift basket from CPNJ, a whole Thanksgiving meal in-two-bags. Now, cooking that turkey with just a microwave will be an interesting task… Let’s see how creative can Mommy and Daddy get. On Friday 20, DTPat visited for a session of colors and shapes.. Yup, last week there was something going on every day!

During the weekend things were slowly brewing. On Sunday we heard some sounds outside and turned out that two people who were just walking by got shot! That was scary! Mommy was all nerves. On Monday, NurseMashaela could not come at all as she spent the day in the hospital thanks to an accident she had at home! I was so worried about her! I missed her so much, she is so silly… I get on her nerves sometimes, but hey… it’s just me being divalicious! She knows I love her so, and I hope she gets well soon. Not being able to breathe well is NOT funny (and believe me, I know about lung problems)!

Tomorrow is Thanksgiving, and I expect the big dress-up, pictures and food day to be great! I heard that the turkey got bathed in vinegar, and seasoned to Mommy’s taste. NursePeronnette will take care of baking it (thank God!). That one is spoiling us rotten with donuts and cheesecake! Well… mostly Mommy and Daddy, I get spoiled feeds and excellent spa baths!

On Friday I’ll get my second Flu shot along with the Synagis. And I better rest well this weekend as next week there is a kick start with the long voyage to Helen Hayes on Monday, and then to see some whales sometime during the week (if all my nurses get well). The adventures never stop… For being a quiet simple little girl I always have so many things going on around me! I live drama!
And that’s exactly how it all happened… Pretty much.

GOD: Thank You for all the blessings that I receive every single day. Thank You for taking care of me, and bringing close to me people that cares so much! Thank You for giving me more than I need, for allowing me to stay healthy and come back really fast from scary moments. Thank You for Mommy and Daddy, and my Grannies and GreatGranny, and Godparents and Nurses, and Therapists and Friends! Allow me to be an instrument of your peace, allow me to bring to the world testimony of the big miracles You do every day. Guide my life, keep me in Your hands. I ask You to take care of so many that are sick! Grant Your healing touch so many stop suffering. May Your LOVE fill every heart of whoever needs someone... Protect the homeless, protect so many kids that are abandoned, and so many who are hungry… I pray to You for all who need You, and for all who need to get to know You… May the world discover that love is the way, and You are love.
Amen.

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TRIP TO TURTLEBACK ZOO

So, after a some fairly quick planning, we all went to the Turtle Back in NJ. It's been 2 years since we got here, and all of our outings have been medical issues, doctors appointments and hospital stays. Before Winter arrives, we put our minds to do something different, and with the help of our star supporting cast, we made it! At first I had no idea of what was going on... I just knew that Mommy and Daddy were sneaky, and that on Tuesday morning I got all dressed up... and then Daddy put a strange thinguie on me. Everyone started saying I was bunyee jumping... very funny, people! And then I was squished in the back seat of a SUV... And I mean squished! All these pillows around me were very squishy! We arrived to the Zoo in just 10 minutes, and it took a bit to figure out how to put all my gear in the wheelchair... Yup, space IS the final frontier... I have too much stuff... Thank goodness I have a strong entourage! Daddy had the task of pushing me all the way... Someone will be developing muscles soon!

Here's the front of the place. Pretty straight-forward. But inside it is a whole new world. Bushes are trimmed with animal shapes, the landscaping is perfect, the animal cages are huge, and the peacocks roam free... Mommy was wary of the peacocks... she was attacked by one back in her hometown zoo and she still has some years to recuperate from the emotional scars...

There were a few birds in display... big humongous birds! Here we see a vulture, black neck swans and parrots... but there were also the huge american eagle, crows, owl, and the big ones that are called emu. Mommy's camera was feeling funky, so she could not snap everything... but you get the idea. Me, I did some catnaps through the birds visits. You know me, if it is not too exciting, I wander away. I love danger!

And talking about danger... The white wolves were AMAZING! They are HUGE! Watching them through the glass was quite an experience! I never imagined they would be so big... and these were young... After watching them we saw a big black bear. And then we took a small break at the carrousel and snack area. Between donuts, fried chicken and egg salad it was all a great treat! Of course I joined in with my special milk, I was not gonna stay hungry!

These felines were sleeping when we got there, but both woke up staring at me, and started going back and forward all the time staring at me... Their eyes were very focused... It was quite a scary feeling. Now I know how turkeys must feel before Thanksgiving day... Mommy got nice shots of them thanks to their keen interest on the diva... Gee, thanks Mom!

In the Outback area there were some interesting horses, from big Dante (a huge warhouse who was not as huge as they can be but still was pretty impressive to us) to the pony in the picture. And there was a variety of llamas... and a bull that was emasculated and Mommy thought it was just a huge burly manly cow... LOL

Here is a rare snapshot of just the three of us! Do I make my parents look good or what? At our side is a pesky peacock that kept following us everywhere. Obviously male, seems Daddy has something to worry about... :P

And so the day got to its end. We visited the reptile area, saw some cool snakes and frogs... Mom was startled by the wounded-heart pigeons as they really look like they have a gorish wound in their throats... The zoo store had some neat plushed animals, especially peacocks. LOL And someone in our entourage got me a lovely picture frame so I will remember my first fun trip for years to come! It was a great day filled with suspense, drama, happiness, freedom, comic relief, and much hope. I can't wait to have another adventure soon! God definitively watches over me, and I can never thank Him enough for all the gifts He brings me!

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HALLOWEEN 2009

And so one of our favorite days of the year arrived. This time we reminisce of Wonderland. Enjoy the little scrapbook of our Halloween 2009!

FLU SHOT & COMMUNICATION DEVICES TEST

Well, this week has certainly been quite eventful! I've been showing off all I can do, so hopefully more things will start moving into the right direction.

On Monday, had to visit my pediatrician to get my flu shot. The checkup was perfect, as I've been feeling well and I've been doing great. I didn't even felt the actual shot. I need to come back in a month, the day after Thanksgiving, to get a second Flu shot, and the Sinagis shot. The EMTs crew were the "fun" ones, so the whole trip both going and coming back was a smooth, funny, happy journey. I didn't have any side effects, no fever at all. Knocking on wood...

On Tuesday we had the long trip to Helen Hayes Rehab Center in NY. Now that was a long drive! I slept for a while, so when we arrived there I woke up ready for action. We didn't have to wait long, as there happened to be a vendor and he show us his demo for the Erica communication system. It was amazing to see how fast the system calibrated my eyes, as I have nystagmus (my eyes shake from time to time due to muscle weakness, but it is a faint shake). I was actually following where they were asking me to follow with my eyes, and so I ended up doing ok with this system. The SpeechTherapist for Adapted Technology arrived, and so she moved forward to trying out other communication devices. So, we moved on to Tobii.

I tried the MyTobiiP10 system. Ha! Everyone was very surprised at the speed that my eyes calibrated, plus the actual calibration is very easy. The whole system's navigation is VERY intuitive for kids. I got the hang of what I had to do quite fast. The therapist put a game of Whack-a-Mole and I kept wacking them as if there were no tomorrow! Now THAT was fun! She put a game of selecting animals to hear the sounds, and although they don't have movement I figured out that the big green button was to go back to all the animals to select the one I wanted. This was by far the best experience between them all! Mommy, daddy and NurseMasheila were too excited to see that yes I did understand what to do, and that yes I can actually follow directions. The secret is out: All this time I've been stubborn and demanding... (well, isn't that a typical toddler attitude?) I was actually complaining whenever someone changed the screens, I wanted to keep playing with specific games... There is another Tobii system that the therapist wants me to try, the Tobii C12, which they didn't have at the center, so they will call up the vendor and set a date somewhere in November. So with that settled, we moved on to the Dynavox.

The Dynavox system gave us some trouble for calibration as it needed to be position in just the right way for it to do the job (unlike Erica and Tobii that found the eyes pretty fast). This took a while, which instantly made us feel not quite comfortable about it. The navigation and layout look as a computer, good for us but not intuitive and easy for a small kid like me when compared to the other two. The system was a bit sluggish, and I couldn't get to play around with it. Maybe I'll give it another try when we go back... but so far I think Tobii the best out of all the bunch. Now Mommy and Daddy need to go in deep with each systems specifications... but that is another story.

So, it seems odd that my eyes could not be calibrated by the LC EyeGaze system. Perhaps there were other external factors, maybe the light was not enough? Or the positioning? Maybe we could explore this one again, just to be certain that we will make the right choice. One never knows, so I cannot "marry" with the Tobii idea.

Today PTEllen passed by, and Mommy and Daddy drilled her about the wheelchair and stander woes. They all dissected every inch of the wheelchair (mentally of course) and figured out what could be done to make it work. We will all wait until the horseshoe-shaped neck support, new AFOs, and the knee support arrive to actually see if that is all that is needed. The guy from Millenium was here as well, and gave some input daring to ask the questions we had thought of (and no one really answers). That was fun too. Also, I got a big box from my other granny with lots of new books! And most of them are in English and Spanish! I foresee long hours of mental drilling... My family is driving me insane with all this educational fun! Gosh, everything has to do with education? Come on! And then they wonder why my head is so heavy!

Well... My nightly treatment must take place, so now... to see what the rest of the week will come up with. Ah, the journey never ends!

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SINGING IN THE WEBS

Yup, the secret is out... Now no one has any doubts about it... I'm singing and talking to my favorite friends, especially the WonderPets. Gosh, you should have seen Mommy and Daddy yesterday when the caught me offguard... I was minding my own business in the living room, enjoying my wonder people, and then I see two figures peeking at me from the kitchen... Kodak moment! Yup... no strong words are uttered, but I was repeating the songs and the dialogue and reacting to my show uttering the sounds that are the unmistakable equivalent. The sound that mimics the word "teamwork" leaves nothing to the imagination. I ignored my parents and kept on with the talking and singing for the rest of the afternoon... but I know they were very surprised, especially because I kept doing it... LOL It's been more than three days that I do it loud and clear so they finally realize that yes, it is true, I understand... I just prefer to have everyone guessing... I love the drama.

Besides this, I've been getting stuff so I am ready for Winter. The North Ward sent me some basics that I really needed, and Mommy complimented it with some stuff she got thanks to the Colombus Day specials. I am very happy with everything. I even got the stickers for the ceiling, so I can exercise my gaze as suggested by the OT. God definitively has blessed me with just the right amount of minions so I can really live.

Last week was non-dramatic, and I just kept chillin in my wagon and in the stander. On Friday my wheelchair arrived again, so now we are in the trial process to see just how useful and safe it is. This next week will be full of appointments and things to do... I will get my flu shot tomorrow, and then on Tuesday I will go to Helen Hayes to see the Speech Therapist over there (and that is a long travel). And then we will have the Halloween weekend celebration... I keep rollin'and i ain't stoppin'. But for now, enjoy this mini scrapbook of October:









I can't say my life is boring! And now I even have one little visitor that every now and then shows up and makes things interesting. I also discovered the VeggieTales, and I am starting to get into them... Hey, gotta give my minions a small break from the WonderPets! (although secretly I keep watching when everyone sleeps, shhhhh... that's a secret!). And I also got the news that my Godmother turned a year older... Hey! Where's the cake?! Come on! Birthday without cake is like a house without me! Send in the cake! (Mommy will liquify it in the blender so I can get it in my tummy, no problem). And to my Godfather: Have a safe trip back to Macondo, USA!

GOD: Thank you for keeping me safe, for the daily blessings that you send me, and for so many people that love me so much! Help those who need you, heal all those kids that got sick with that swine flu and other illnesses... Place Your hands over them and carry them, and make them feel your Love. Amen.

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APPOINTMENTS GALORE!

Wow! I've been quite a busy bee for the last two weeks! It’s been great. I’m getting all the attention I need, and there seems to be progress coming my way. A new OT joined the team and so far so good. My APTTracy visited me and brought a clock scanner that I should use with my switch. I get it, now I have to work on actually been able to activate the switch… We’ll get to that.

The wheelchair blues has a new episode, but at least things should move in a positive way. The PT realized that the PO said the wheelchair must recline (go flat), so they ordered what needs to be added so the wheelchair can do it. Now we are waiting for it to arrive, so we send the wheelchair back to its headquarters so it is modified to what I need… I hope that this doesn’t take too long. Being in bed or just in the stander is not funny. I’ve been using my wagon again, but I have a snug fit on it. Creativity always helps me, but some things are just a necessity.

Went for checkup to see my Pediatrician, and she was quite happy everything is well with me. She prescribed a visit to an endocrinologist which is a work in progress. Later on I had an appointment with my Physician, who prescribed new AFOs, a horseshoe neck support, and knee support for use when I’m in the stander.

This week I went to Helen Hayes Rehab Center on Tuesday. It was a rushed date, as we got the notice on Monday’s afternoon… Mommy and Daddy made sure I wouldn’t miss that appointment and they delivered. So, I went in the ambulance with NurseMasheila while NursePeronette followed in her truck with my equipment. It was funny, when we got to the place the lady was actually happy to see so much people (I guess they are used to only a few… And you know me! I have quite an entourage! ). There were some technical issues as we had to wait for medical approval for up to two hours… but the AssistiveTechOT decided to at least give us some tips while we waited. In the end we got a bit more as the approval arrived and so he got into showing other assistive alternatives live. We checked various scanner programs in the computer and got some direction to look into (SpeakingDynamically’s Boardmaker, Intellitools Click-it for creating hot spots, and ZACbrowser for alternatives that can be used with them as they would work with hot spots). We also checked a router-scanner for allowing me to turn on/off tv or dvd, helping me make my own choices. And finally we checked the alternative of using a proximity switch so I can actually get results right away (diminishing frustration). I’ve got to come back at the end of month for a date with the AssistiveTech/PT so we get into more communication options. This is VERY exciting!

I got a visit from PTEllen, who made me whip it all from head to toe. After she left I was so beat I took a nice nap to recharge my energy. I also got a visit from OTMaya, who discussed some therapy alternatives with Mommy and Daddy including the use of TheraPutty (they use the Play-doh but boy is it stinky! I am glad they ordered the putty, no smelly stuff!), getting a prescription for a Benik hand resting splint so I keep my natural curves while I sleep (I’ve been keeping my index finger too hyperextended without realizing it), getting a prescription for a thumb spica so my thumb is well supported so I can click without error (finally all of them see I do understand the command to click, but I don’t have the finger support to do it), doing some rice texture exercises (placing rice and beans in a sock and placing my arm inside so I feel different tactile stimulus), and reinforcing the flashlight exercise so I keep strengthening my eye gaze following ability (Kyonene, sigue la bolita…). She also suggested a specialty ophthalmologist visit. OMG! Now these people are putting me every little centimeter of me to work! But you know what? I’m loving it!

So… Coming up is a mandatory appointment to get my Flu shots, and going back to Helen Hayes for more assessment. Also follow up with endocrinologist and an ophtalmologist (specialized on assistive technologies), with DrBach, with the SMA Clinic… And more therapies… Gosh, the schedule of a diva is always too much! I hope Mommy and Daddy can keep up with it! And don’t forget Halloween! It is just around the corner! I hope I don’t get lost in Wonderland following the busy Hare! And I hope that playing cricket with the Queen doesn’t end in an off with my head! Mommy and Daddy decorated the whole apartment with creepy stuff… There are thick spiderwebs in the living room, and the Easter tree became the Halloween tree! Even the walls are now covered with spiders! Oh, my! Can never say that my home is dull! There is something going on, always. And I would not have it any other way.

God: It has come to my attention that many kids are ending up with the piggy flu. Please, God, take care of them so they heal fast! Give energy and health to their caregivers, so they can do what they must. Special prayers for Sarahi, Ryan, Shira, Stella, Emily, and MJ so they are safe. Thank you God for so many blessings. Every day you take care of me, granting me so many miracles! I acknowledge Your caring breath, and how you take care of Mommy and Daddy and Auntie and Godfather. Thank you because there is always food in our table, we have shelter, and we have each other. Our lives are in Your hands. Amen.

NEW ADVENTURES

Well, these past days have been something different alright! I've used my stander, although it is a bit scary (especially the getting in and getting out parts). Daddy flies me over to the flat stander, I get all belted up, and then I get inclined to 45degrees. So far I can be over an hour with no problems. When Daddy takes me off it and places me in the bed, I fall asleep real fast. It leaves me exhausted! But all in all I do like it. Seeing everything from a different perspective is a plus. And seeing everyone getting the wow factor because I am so tall is simple fun!

Now, the wheelchair is another story... The days that everything goes right I can be sitting at 45 degrees without problems... But somedays I just can't tolerate it. Last Monday I scared everyone. I was placed in my wheelchair and taken to the computer so I can practice my clicking, and five minutes later I started choking. Since the wheelchair does not tilt, I had to be unstrapped and taken to my room ASAP so I could be suctioned and bagged... I came back up really fast, but it was scary anyway. This is just what Mommy and Daddy tried to explain to the people who ordered the wheelchair... I need to go flat when I have emergencies. Being at home at least Mommy and Daddy and NurseMisheila move fast... but imagine if I were out... Imagine if by any chance I were in an elevator, where there is not even a chance to be placed over the floor. It is a simple big issue, as it is very life threatening. So... Now my minions will have to do something about this... I may be able to use the wheelchair within the house being very near my bed, but not outside. And even in the house, everyone gets very nervous about the what if's of an emergencies (when every second counts)...

Besides the Monday drama, things have been good. TherapistPat have been on time as usual, making me use my skills over and over. Yes, I am ready for new stuff. I am learning my colors, and matching my animals. I am also getting more vocal, I let everyone know when I want service, when I want attention, and when I want to be left alone. Daddy got some appointments for me, so I can try some eye communication devices. That should be fun.

On Thursday I got a visit from the Eye-Gaze guy. I tested the system, but my crazy eye movement made things a bit difficult. I have some nystagmus that at times shows and at times it is not too noticeable... but for a camera everything is obvious and calibrating the equipment was quite a task. At least Mommy and Daddy got some insight on other approaches to communication that they can apply in the meanwhile, and some ideas on how to make some things work. He promised to gather information on how to use the equipment with patients that has nystagmus. I also got a notice from TherapistTracy, she will come soon with a clock-like communication device... Hopefully that will bring something new to the table. All this attention floors me! But hey, it's all about me!

And so, the weekend comes in, and family will gather for some indoor family fun (movie-mania). Many blessings have been coming my way, some in the form of old contacts that are reappearing, and some in the form of people who are trying to help. My whole life is in God's hands, and I know that he protects me and cares for me all the time. Of all things I may say, this is the prayer that says everything that I feel:

"The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures:
he leadeth me beside the still waters.
He restoreth my soul:
he leadeth me in the paths of righteousness
for his name's sake.
Yea, though I walk through the valley
of the shadow of death;
I will fear no evil: for thou art with me;
thy rod and thy staff they comfort me.
Thou preparest a table before me
in the presence of mine enemies:
thou anointest my head with oil;
my cup runneth over.
Surely goodness and mercy shall follow me
all the days of my life;
and I will dwell in the house of the Lord
for ever."

Psalm 23 - bible - psalm of david

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