XMAS EVE

This year was my 4th Christmas, and also my sister's 1st Christmas, so Mommy decided to start a new tradition: Reading three Xmas stories on Xmas Eve. We read The Animals Christmas Eve, What is Christmas, and The Night Before Christmas. After all this I was rushed to my room so I would sleep... Santa always comes after he knows I'm sleeping.

Santa Emails Deedee

Here you can view the message that Santa emailed me before Christmas! Wow! So it is true! He has been watching everything I do! Thank goodness I am always a good girl!

BIG BANG DECEMBER

The year arrived and went in a minute! I can't believe that we are almost at its end! So much drama and so much to do has left me almost like my mommy, very tired! But it is the happy tired, mind you. There have been some special missions brewing in the big cauldron that I name my life. Here's an update of my latest dilemmas... and outcomes.

THE TEACHER SITUATION
Oh, boy, that one has been a longaleer! I had no teacher since classes begun! Someone had the bright idea of placing me as homebound, and from that point on it all has been a mess! I had no teacher until last week that I finally had a substitute teacher come and see me. Mommy and Daddy had filed something called "due process hearing and emergent relief" and they did a "mediation" with the Department of Education so I would finally get a teacher and compensatory time for the hours lost without teaching and without speech therapy. So, the substitute teacher was Mr.Farina and I really liked him. He was very engaging and fun. That week I learned about bears and even did a panda bear puppet! This week I met my official teacher, Mrs.Mangal. She's getting the Communication 101 bootcamp from my beloved nurse Mashaela and from Mommy, as it is a bit hard for her to get my answers... but we are getting there. Today she brought a book about trees and its inhabitants and I just love animals! I'm looking forward to finishing the book.

THE TOBII SITUATION
Wow! It has been one year and three months since we all began the process for getting me a proper communication device system. It has been a long process basically because of outside factors... but let's stay with the present day. The last of the paperwork needed to submit for Medicaid was gathered today, so it is certain that this week my SLP at Helen Hayes will submit the final paperwork. And now we have a waiting time of 30 days to see if Medicaid says yes. If so, I will finally be a step closer to being a bit more independent and being more understood.

The communication device is a computer that has a touchscreen with 4 cameras integrated on it. I need this system specifically as I have a bit of nistagmus in my eyes, so they tremble, and normal 2 camera system don't do eye-gaze calibration. With this system, I'll use a communication page that will allow me to say what I want, how I feel, what I want to do, and where. Later on communication can expand to finding out learning resources and even studying through Internet, but that is later on... for now it is all about the basic communication so strangers can see that I think and that I have deep opinions about everything.

WHAT's UP WITH MY WHEELCHAIR AND STANDER?
The wheelchair now has two flat tires, so we are waiting for them to be repaired. Besides that, my Headmaster collar is still in process... as well as my inflatable bed bath. This has been a two-month waiting... and we are still counting... Talk about slow service!

SERVICES, ANYONE?
PT, OT and SLP seem to be a never-ending story in themselves... and I have to take the good and try to dismiss the bad.

From the Department of Education: PT-Martha is outstanding and gets the job done making sure to involve me in everything. SLP-Gina was wonderful, I really had fun with her. Sadly, she has to stop working with me, which made me very sad. She will definitively be missed. OT-Bob is a piece of work... I hope he starts letting me do what I can do. Now I am waiting for a new SLP... These changes are frustrating and very unnerving for me. I wish things could be easier... for everyone's sake.

From the Homecare: PT-Bo has not appeared in three weeks. I don't think he'll be back... OT-Roze do some of the exercises that my old OT used to do. I think she was on vacation and will be back next week...

IN THE END
So... You win some, you loose some, and you always keep on trying. The year ends with me being hopeful for a proper communication system, for proper education that takes advantage of my thirst for knowledge, for my old set of wheels to be fixed and hopefully transformed to a power wheelchair (perhaps next year)... I look forward to a 2011 filled with opportunity and wonder and further changes that show the world that I am the only one true Diva!

TO GOD
My Dear Father: This has been a very special year, as this has been a year in which I have been learning so much about You, about who You want me to be, about the joy of being kind, courageous and true... I am so happy to know that I can always count on You! You have been there through good times and through ugly times, and You've carried me through it all! You have blessed me with wonderful people to take care of me, and whom I love dearly. I know how lucky I am, and I hope that I can give to others even more than all that I have received. Help me to be a messenger and instrument of Your will and of Your peace. Let me grow each day even more into Your love. Bring this crazy world the gifts of Harmony, Joy, Peace and Love. Allow exceptional discoveries to be made, and keep on bringing so many miracles to so many people... Help heal so many babies and kids that are suffering so much! Bring on healing of the body, and healing of the soul. I love You, God. I am deeply grateful. I sleep and live without fear, because I know that You've got my back. Thank You, God, for everything. Thank You for Mommy and Daddy, and for my little sister Kali. Thank You for my family and friends, and for those whom we do not know that also pray for me. Thanks for giving us life, for the roof over our heads and for the food in our table. Thank you for keeping us together. Thank you for all the Love and all the Blessings. Amen.

May Baby Jesus bring all of you everything that you need to simply smile!

~

Santa's Message, Xmas is HERE!

Santa sent me a message! You can view it here!

WHEELCHAIR & STANDER WOES VIDEOS

I'm having trouble with my wheelchair and my stander, and here are the videos that explain it all. Hopefully some professionals will find this helpful... I tried my best to look at the camera (when possible) and "smize" (smile with the eyes).

WHEELCHAIR:


STANDER:


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MY LIFE AS A TRAVELING GNOME

Let's see... where do I begin my chronicles... Gosh, I have been traveling as much as the traveling gnome. Not that I mind, I love going out and these silly appointments are the ones that allow me a breather! I went to New York on Monday and Tuesday.

On Monday I visited the dermatologist to see what else can be done about my face rash... Seems I am a human puzzle for everything, especially that. It is the 5th visit, and I get yet another cream to try on and another appointment to see if it works. So I am getting monthly dermatologist appointments that seem futile as the rash keeps on being there and nothing happens... The skin swab for a culture came back showing nothing so everyone is baffled. What makes things worst is that whenever I go a different doctor sees me, so there is no continuous care or line of thought from one professional... At home we do more using the witch hazel alone than with these creams. My biggest complaint is: People, if you don't know something just say it so we try looking for answers elsewhere... Now that's a thought!

On Tuesday I went to the SMA clinic to get some second and third opinions on what we could do to make my wheelchair and stander work... We had no means to bring the equipment physically, so Mommy and Daddy made two videos with me using it, explaining the problems. We are very tired by now of saying the same thing over and over and having no one listen... What is it with professionals and NOT listening? Don't they realize their work will be easier if they listened? Ah... So, we got there, they saw the videos, asked questions, and will consult to see what can be done. I expect nothing much... By now I guess that we will just keep on with improvisations at home and that's it... Mommy and Daddy are good at that. Since we have no transportation is like people don't get the sense of urgency to fix my stuff for once and all... I would like to feel safe if I go out to the Zoo, or any outing... but people just hear we have no transportation and it all seems like useless efforts... Or at least it feels that way... Anyway, the neurologist, nutritionist and the pulmonologist checked me up. Everything is constant and fine with me. Yay! I had my flu shots last week, and they are still trying to get Synagis approval.


I had the Tobii month trial from the end of September to the beginning of November. Now I have to wait to see if Medicaid approves it. This has been a very long process... I remember we started it all in October 2009. Everything has been delayed by months thanks to outside events in outside people's lives... It has all been very anoyying and frustrating, so I hope that I'll finally get it. The latest bump in the road was that at the beginning of trial Mommy had been told that someone from Medicaid will come to evaluate me and then they would decide to approve or not... At the end of the trial she called up to see why no one had come and then she was told something VERY different: An SLP was supposed to be training me on the Tobii and then was supposed to submit a report to Medicaid... Mommy is not crazy, but somehow the system is trying to get me or something! She contacted my SLP at Helen Hayes and things are moving... Hopefully it all will have a positive outcome.

I'm still hopeful on actually having a teacher at least for Christmas... Wait! Maybe THAT will be Santa's gift... Wouldn't Mom love it, ah, the gift of knowledge! LOL We've had some incidents that are very bizarre... I've had no instructor since September, and my SLP from the Dept. of Edu started a bit late, so Mommy and Daddy filed a Due Process Hearing for an instructor and compensatory time so I have make-up time for the past weeks of no SLP and no instruction. No one contacted us for the grace period, so on the same day an Emergent Relief was filed this lady appeared in our home... Apparently she is to be my instructor but she mentioned she had no material, that she would use whatever was available from my stuff, and that she expected to work 3 times a week and for the time I was interested (as kids should not be pushed). Hmmm... I heard Mommy complained as the IEP says instruction is 5 times a week, for 2 hours. Originally the lady said she'll come in Monday, but Mommy asked her why as the week had not ended so she said she would come Thursday. Thursday she called saying she had a Chihuahua in her car and if it was ok to bring it in... We said no, so she again mentioned coming back Monday. Mommy asked about Friday and she then said that if there were any questions we should ask her supervisor. Three hours later she called and put the super on. Mommy asked about which was the school, the homeroom teacher and where were the plans... Since there was no answer to these, the super gave Mommy some names to call... Mommy contacted her advocate at SPAN, wrote a letter to the district superintendent, and now we are waiting to see what happens. We'll have a hearing next week, so wish us success. This is better than a TV series, really! We know drama! (A bit too much, actually).

So... as you can tell these and many other things have been keeping me very busy all this time. November went away in a blink! Not just November... the whole year! Just a year ago I visited the Turtleback Zoo in Thanksgiving week! Wow! It seems like yesterday!Tomorrow is Thanksgiving Day, so I look forward to taste some special Virginia Ham (done with a special family recipe from Auntie Gladys), and to have a nice quiet evening with my family. Nothing beats being with Mommy and Daddy and even with Kali. Nothing!I am happy that I have been at home, no visits to the hospital in more than a year and a half. This has allowed me to focus on very important stuff: Memorizing every Wonder Pet chapter, discovering Kailan, doing my studying of colors and shapes and animals... I'm back on track and more. Hopefully I'll soon get the tools to rule the world!

GOD: Thank you for so many people that love me and take care of me in body and spirit. Keep us always in Your hands, protect us, and help us move on. Take care of so many that need you, and bring on many blessings to so many families that are struggling even more than we do. Thank you for being my best friends always, and for pouring so many blessings in my path. Let me be an instrument of your Divine Will and of Your Love and Peace. Amen.

DEAR SANTA: I want to begin studying soon. Can you bring me a nice teacher and a nice tutor for Christmas? I have been a good girl this year as every year. With Love, Your favorite DIVA!

~

Just Another Sunday Morning

It was Sunday morning and as usual Kali was creating havoc and I needed my minions to service me! So I guess they went a bit coo-coo because they didn't get to sleep much... Tough cookies! And I always end up having to tolerate this kind of misbehavior just when I want some peace and quiet... Dream on!

HALLOWEEN 2010

DEEDEE AS PRINCESS JASMINE!







OUR HALLOWEEN

THIS WEEK's HAIRDO

The return of pink hair and pretty colorful beads!

Deedee Using Tobii-P10: Two Videos

As everyone knows I have a Tobii P-10 as a month trial. The time is almost up, so I decided to record how I use it so people can believe that yes I can actually use it. Right now I do simple things with it (after all it's only been one month), but with this I show I can manage the pages, make selections by blinking upon what I choose, and answer questions for easier communication.

Mommy made a page set so my communication board was completely customized for me by her... It is always handy to have a techie/programmer/illustrator in the house! The start page gives me the following options: How I Feel, About Me, My People, Needs, Fun Stuff, Where I Want to Go. All pages have Yes, No, Can You Help Me, Wait a Minute and Back to Main Menu.

PART 1: COLORS & BATH
Before filming the video I had chosen My Fun Stuff, then I selected Painting, and inside that page I decided to do so using a coloring book and fingerpaints. Here you can see me in action.

PART 2: NEEDS MENU & MOVIE
Here I went to the needs menu and selected clothing as the room was chilled and I wanted to get warm. I also selected a Disney Princess movie.

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WASHING DEEDEE's HAIR

Here's a peek at how Mommy and Daddy (mostly Daddy) wash my hair... Yes, Mommy now has green hair (go figure!). This is what I have to deal with everyday... I tell you, these two are always bickering like that... It's not easy living with them!

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APPOINTMENTS GALORE!

These last weeks have been filled with assessments, assessments, assessments... I enjoy the trips but sometimes it seems that there is no point for the final outcomes are zero. In the end, Mommy and Daddy find the answers on their own... Now what do you think of that...

Last week I visited my old physician for a recap on how I am doing. I got a hip x-ray to see how my hips are. Just as expected, my hips are displaced. This translates to caregivers having to be extra careful when handling me, so I don't get hurt. I don't get too worried, I know that my personal team takes care of every detail. I got prescriptions for the changes my equipment need as well as for a special pillow so my hips are kept aligned.


From the dermatologist I got the same cream that my pediatrician had prescribed in the beginning of my face rash woes... I have used it religiously for two weeks straight and at least the rash is a bit more tame. Still the problem remains: It just won't go away. I know that for my next dermatology appointment they shuld have the results of the culture they did, so I can finally know what is going on in my face. At least the complete freckled tomato look is a thing of the past. I'm back to my porcelain self... with some reddish hints.

Last Friday I went to Valley Health and got acquainted with the PT there. What a nice surprise! I loved how the PT talked to me and handled me without any fear. That is exactly what I need. I hope I can go back soon, I am certain that she can help me a lot.

During the weekend my stye woes came back. Mommy found a way to treat styes using special goggles. Now, my eyes have been very red and getting styes because I have extreme hydration problems in my eyes. The main reason is that I cannot close them completely at night when I sleep. This is called lagophtalmos. Main problem is the cornea can get affected. So, a way of treating is hydrating the eyes with GenTeal or Refresh. This is good during the day, but at night I need a bit more help. Mommy found out about the special goggles in which you can do heat or cold treatments. They allow for the eyes to keep humidity while I sleep. Here's me using the goggles (yes, they are pink):


I have a set of goggles and eye patch, so the stye can get treated while I'm awake. Everyone was so proud of me the first time I used them, as I was not scared to try them on. Of course my parents were concerned, but after they put them on I signaled with my thumb that I understood the purpose of the goggles and that I would call them if I needed them... No need, I slept like a baby for the whole night. And so far, I love them. My eyes are no longer gremlin red. And the stye is getting what it deserves.

I thank God every second for all the good stuff that happens in my life, and for all the right people that he send my way so I get help and so I accomplish everything that I put my mind into. I trust He will keep on protecting me and allowing me to give others as much love as I am receiving. I always have so many reasons to be grateful, and to smile!

~

Sensor Switch Tests

For some months I've been using a Sensor Switch that my friends from the Technology Lending Center lend me. I have a MicroSwitch, but it is getting very difficult to use it. Ever since my last hospital stay back in February 2009 I lost plenty of strenght, so pressing anything has become quite an ordeal. My old assistive technology therapist wanted me to try the proximity switch and the sensor switch... So far I've only been able to test the sensor switch. It has been more successful than the MicroLight, although it is a problem to set it up right. After that is done, then it works most of the time.

One of my favorite toys is Buzz's Bubblemaker. Here is a picture of me using a sensor switch to activate it:


My main problem is always how to position the sensor so I can activate it with ease... It was the same story with the MicroLight switch that I have... What to do, what to do...

I also use the switch when I'm in my wheelchair or in my stander. Here's a picture of me using the Sensor Switch while I'm in my stander. You can see me using the sensor switch while playing an alphabet game.:




I was actually doing good today, my numbers were high and I played for a while with the switch. Afterwards I got my reward, a movie of course!

Here's a video of my stander session using the Sensor switch to play in the computer:



Here's a video of me playing with my Buzz Lightyear Bubblemaker using the sensor switch:



Hope you enjoyed this! :) Nothing like live-action Diva!

~

ENJOYING FALL

What a week! I went on Monday to the Dermatologist, and basically ended up getting a prescription that Daddy didn't realize we already tried for my rash... been there, done that, only witch hazel works. I should be back within a month to see what else they will try... if they dare...




On Wednesday my OT passed by and we had fun using his Iphone to read some stories and play. I heard something about an Ipad, but maybe that will be a mission for the big red fat guy in December or the three kings next year. Thursday was a happy day as I got the Tobii mount so I can finally start using it... when the screws to attach it to the monitor arrive. The vendor promised to pass by on Thursday and so he did. He put it in place, and was surprised at Mommy's customized board for me. Hey, I know I am very lucky I have my own techie/programmer in the house, 24/7. On Friday the PT passed by and woke me up to musical exercises (Tio Nobel anyone?). I also started using the Tobii, and I showed Mommy and Daddy that yes I understand this stuff... The new setup using blinks to select is much better than the hovering in place, at least for me. So now it is a matter of exploring all the pages and learning my way around! At least I already have the yes and no location very clear.




The weekend has been fun, as I had a Little Mermaid marathon (I had no idea that Ariel had a baby!), and I expect tomorrow more training with the Tobii. I also heard that there are some works to baptize Kali, which makes me happy as I was baptized when I was 3 months old. It is the most important thing I have done so far! Hopefully she will get godparents that will lookout for her and love her as much as my godparents have done with me... I have out-of-this-world godparents that make sure I am allright. Thank you Maria and Sti!




So... This is short and sweet, but it sums up all my latest adventures. Please keep my Auntie Ednita in your prayers, she may have to battle cancer if things don't get as expected! That scares me a-lot! Pray for her, and for all the kids that got sick in these last two weeks... The back-to-school was harsh for many SMA kids. Also keep Uncle Sti and Nurse Carol in your prayers as both will have operations this week. May God grant fast healing and happiness to all who need it. Amen.

~

A BUSY BEE

September has brought many appointments to make certain I am well. Mommy and Daddy are taking me to the SMA Clinic at Columbia Presbiterian in NY so the assessments that I get are more in tune to what I really need. When doctors have limited knowledge of SMA things get rough, so it is best to go with the ones that actually see many cases that are linear to my own condition. School began, but not yet for me! I’ve only seen the PT and OT so far… But now let’s go into details:



DOCTORS UPDATES
At the end of months I saw the physiatrist affiliated with the SMA Clinic, Angela D’Alessandro. She made a complete assessment of my current whereabouts, and agreed that the stander and the wheelchair that I have are not appropriate for me. Yes, all the people that handle SMA cases says “What the…” to that… She called the company in charge of the equipment to enlighten them on what they should asses upon my next rehabilitation visit… Also, she called in the head PT to do a quick brainstorming. She says right now the important thing is getting my OT and PT services rolling to prevent future contractures and other problems. So, now we have to find a company that do home visits for PT and OT, and that accept direct Medicaid.


During the first week I went to the endocrinologist. I had a MRI and a hand X-ray, and they both indicate I’m ok. The hand x-ray indicates that I have the proper growth, so I am just tall. The MRI did not show any weird stuff, just my brain. I also had the results of bloodwork done, which showed low cortisol levels. This can be the cause of my extreme tiredness, although there was no big concern about it. I need to repeat the bloodwork to see if that is consistent, and to see my carnitine levels. So far all vitamins and other stats are within normal range.

Last week I went to see the neurologist, pulmonologist, nutritionist and PT at the SMA clinic. The voyage had no commotion. The attending neurologist got all my information, updating my record. We expressed our concern about the rash I have in my face, my eyes redness, and my overall tiredness. We gave him all input from the recent bloodwork and tests. Upon telling the head neurologist he definitively questioned the need for an MRI for a SMA kid. The face rash is due to the drooling, but he will wait for the dermatologist for further input and prescriptions. The eye redness is due to extreme dryness, mentioning that I probably didn’t close her eyes completely when sleeping (which it’s true). My team needs to keep on making sure my eyes are well hydrated. His main concern about me is why in blazes I was put in homebound school instead of sending me to the actual school. He sees no reason for me not to go, as cognitively I am fine. He offered further help on that issue, contacting MDA in NJ so they would help us advocate for more school possibilities.

The Pulmonologist checked me up and found nothing wrong with my lungs. He checked the ventilator and fixed the settings so I could breathe more comfortably. I even sighted after he did so! So now my effort should be fine, allowing me to be less tired. We’ll see about that.

The Nutritionist evaluated my caloric intake and what I am taking now fulfills all my needs, so I’m stuck with same food and quantity (Elecare, 3.5 scoops six times a day).

Finally, the in-house Physical Therapist evaluated me and saw some pictures of me in my equipment… She also wondered why in blazes they setup the stander as they did (above the knee) when I have no stability or strength in my legs… So she suggested placing the knee pads under the knee for better support. She reviewed the alternatives for headrest and for neck control and agreed that they are good (the Savant headrest and the Headmaster collar).

I had my Pediatrician appointment last Thursday, and so my 3-year-old checkup was officially done. She expressed same concern about the face rash and red eyes, everything else being perfect. She was also mad about all the doctors not sending her reports so she can keep track of everything (not our fault, as we have given her information to everyone).



SCHOOL ISSUES
On Friday afternoon, the OT and PT from the DOE (Department of Education) came in. They both gave us a summary of what they are here for (mainly teacher support). We all troubleshooted my stander with me on it, and the best fix for me to use it effectively is to ignore the knee pads taking them off and simply use the knee immobilizers that I have and that actually support much better my whole legs. Standing with them makes a big difference, even visually! Wow, such a simple solution and all this time we didn’t thought of that… Four heads think better than two. The teacher is supposed to make her first apparition next week… we’ll see about that.



OVERALL OUTCOMES
So… I am excited for everything that will come in the future, but I am quite aggravated and annoyed at having to wait so much and fight so much for the meager things that I need. With the communication device, I am waiting for the right mount (it’s been almost 3 weeks that it is sitting at the end of my bed, staring at me…) as I cannot use it with the crappy current one. That has been mayor frustration! I need PT, OT and ST that are not from the DOE so I get the rigt weekly assessments… the big problem has been finding them as I need the service at home. School will be homebound for now, but we will try to ask for re-evaluation as my assessment classified me with cognitive capacity of a baby (which I’m not) and I know that being homebound I will miss a lot on activities, experiences (even if it is just a simple getting out of the house!) and creating relationships (hey, no offense but I am tired of being surrounded by old people all the time!). Mommy and Daddy have many fights ahead… I support them 100%.



GOD
Thank you for keeping me healthy and out of hospital woes. Thanks for surrounding me with the right people, filled with love, kindness and toughness. Help me grow, help me be all I want to be, and allow the tools to let me achieve my goals I have. Thank you for carrying me in your arms all the time. Help Mommy and Daddy do what they must. Take care of all sick kids, so they overcome their illnesses. Help me become a better little person, so I am happy and keep on with courage and endless hope. In you I always trust. Amen.

~

MESSAGES FROM THE ISLAND & FLORIDA!

These are the messages that my family and friends recorded back in PR and in Fl for my birthday. I finally found them! Enjoy!

Gys, I miss you all so much! :X

FROM GRANDMA EDNA


FROM AUNTIE GLADYS


FROM GODMOTHER MARIA


FROM GODFATHER STEVE

WHAT's GOING ON

THE ADVENTURES NEVER STOP
Yes, through the beginning of August I was sad and blue, but then my birthday arrived and it all changed again to being happy and well. I though that I was going to be second place in the house after the arrival of the baby, but I should have known better. I am still number one, and Mommy and Daddy still love me the same. And the little wailing banshee… well, her screams are growing on me too.

For my birthday I had two celebrations: One with my people from Puerto Rico (Hey, Godmom! I’m still waiting for the pics and videos!), and a second one with just the three… erm, four of us! I enjoyed a melting chocolate cake that was yummy! Yup, I got my hands on that one and enjoyed licking my fingers! It was all about Kai-Lan, and she is definitively another character that is growing on me. It has become really tough to decide between Kai-Lan and Ming-Ming… Gosh, life is filled with tough choices!



TOBII RENTAL ARRIVED, SORT OF…
A week after my birthday the Tobii rental finally was approved and arrived home. Mommy spent two nights configuring some screens, but when I was about to use it... it just would not calibrate my eyes… all because of the mount/pole. When I had the week’s demo and when I tried the system at Helen Hayes the mount was different, very versatile so the Tobii could be put in different positions. The mount that comes with the rental is too static and doesn’t allow me to use it at all… So now I’m waiting on the right mount to actually try the rental… The main problem is that Mommy and Daddy have to actually buy it since that specific mount is not for rental… Everything is money. So… Now Mommy and Daddy are trying to make arrangements for that purpose… we hope that I get an extension to my rental as I have not been able to use it and it is not my fault. We will see what happens…



WHEELCHAIR & STANDER WOES
Well, the story about my wheelchair and my stander needing some customizations so they actually work for me continues… Yup, this is almost like a saga or mini-series… I went to Children’s Specialized Rehab where once again everything was tried on, once again the PT just did some minor adjustments and once again the customizations that I need are not on sight. They won’t think outside the box, everything goes by what is available for the Buffalo stander and the wheelchair. No doctor is around, so whatever the PT feels is valid is what goes… and it REALLY bothers as the local physician admitted that things were not what I needed and said he would talk with rehab so they fix everything…

Being frustrated with the efforts at that place, we finally made an appointment with Dr. D’Alessandro who is affiliated to the SMA Clinic. She gave us al some pointers to try the old Rehab one more time, needless to say that effort failed so we will go back to her for final advice. This coming and going needs to stop. I’m convincing Mommy and Daddy to just stick with the people of the SMA Clinic as no one else seems to know what they are doing. And I am tired of it all!



THE NURSING SERVICE OPERA CONTINUES
What about nurses? They are defective! – Yes, add that to the Meatloaf song. It is all very VERY ridiculous. We ended the second shift and weekends with Maxim so another company would take care of it. We grew tired of the excuses and nurses that should not have a license. So, now with the new company covering those holes things should be better… NOT! Main problem we are getting is that nurses are afraid to come to our home because of the location… Who knows, maybe THAT was the real problem before and no one would tell us… We just know it is all VERY frustrating.

Now, what happens when the primary nurse decides to go on vacation without telling any of us so we would prepare things for what is to come? Yup, a week of chaos and mayhem. Last week was horrific. Mommy and Daddy had to handle everything about me in the end, as my care is VERY SPECIFIC and people just would not follow instructions. My life was in danger more than once, and needless to say I just don’t want to feel the presence of some people again. It took me 2 days to get over the fact that I got harmed in the process, especially in matters of trust. By now, if it is not Mommy or Daddy I trust NO ONE. I wish government would simply pay Daddy to take care of me, so I would not have to go through all this. It is not fair, to anyone.



UPCOMING APPOINTMENTS
September is filled with visits to New York. I’ll go to the Endocrinologist this week, and to the SMA Clinic next week. Then to the dermatologist if she does not see me at the clinic. I also have a date with my trusty pediatrician, Dr. Velickovic.



AND CLASSES WILL BEGIN, HOPEFULLY…
I know that classes start next week, but no one has contacted us to know teacher and/or schedule. That’s really sad, as they had promised we would get to know the teacher before the classes began. Promises, promises… We are VERY wary of things, especially the PT, OT and SP through the Education Department. They came saying if changes were needed they could be done without a problem, and then when you actually realize something is wrong and needs to be assessed the doors start to slam in your face followed by a titanic NO. So… We foresee many, MANY challenges ahead… Gee, how strange…



WRAPPING THINGS UP
So… What else can I say? Many things keep happening around me. Some things are really good, some things are bad… But the important thing is that all leads to the main important event of me, being alive, defying the odds every second that I breathe. Mommy and Daddy do a lot for me, and things keep popping up to make things even more complicated. But God doesn’t desert us, and every time a door closes a window opens up. Keep believing, keep hoping, keep dreaming, and keep swimming… Just keep swimming…



TO GOD
Please God, keep us all safe and away from harm. Open the hearts of so many so that they can see truth and feel some compassion. Allow us to keep witnessing the good that this world still has, keep asserting the fact that a better tomorrow is ahead. Cover us with you justice and your endless love. Help Mommy and Daddy find the right answers, all keeping to their beliefs even if it is a very hard thing to do. Send Angels my way, so they care for me the right way, so I can really live! Thank you for the good people around me, for those who always pray for me and for those who never forgets us all… May their good wishes be multiplied along with many blessings! Keep me in your hands always. Amen.

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