Just a small quote

"The patient who questions the doctors, who doesn't accept their answers at face value, is the patient with the best prognosis." ~ Dr. Bernard Siegal

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HOT HECTIC SUMMER DAYS

Ever since my new sibling came to our house, mayhem and chaos rules. She keeps crying and crying for everything… what a cry-baby! Me, I’ve been quite upset about this… No one ever asked me if I wanted to share my spotlight… And I hope she doesn’t get any ideas! Hmph!


I’ve been going to my usual appointments, taking care of meds for my eyes and checking my overall health. So far, so good. I love summer days, although my skin hates it… What to do, what to do… I wish I could actually go out so I can get a nice tan… this pale “Team Edward” look is so un-divalike! But I know, I know… respiratory safety first… At least I am sitting higher in my wheelchair, as you can see in the picture above… and that was for two hours, in the hot living room!


There are many plans ahead for me… Soon there will be a change of nurse services for afternoon and weekends, I’ll get a whole month to trial and master the Tobii P-10 (so it finally gets approved), my birthday is around the corner (next month), and school will come to me in September… August is already filled with specialists appointments so I’ll keep on with my “serious” travels… Any volunteers to take me out to have fun? Come on… Anybody?


GOD: Keep on taking care of me and everyone around me. Thank you for so many little blessings that actually mean a lot. Grant healing to all who need it, physical and spiritual. Help my Godfather bear his dialysis, and so on. Help Mommy and Daddy and me with little Kali, so we can all be patient and happy. And may Kali have as many blessings as you have granted me. Our lives are in your hands, our good shepherd!

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MEET MY NEW SISTER!

Yes, that's right, now I have a new sister. Her name is Kalisto Beatrix, but you may call her Kali. This is my diary, so if you want to get to know her adventures and see more pictures of her, you should go to her own diary: www.KalistoMedina.blogspot.com

These days have been quite something! I still have the eye stye, and hopefully tomorrow the doctors will intervene and end that woe. Last Wednesday Mommy had to go to the hospital to deliver Kali, and I didn't saw her in 3 days! I got quite cranky and scared, but in the end she came back... with company. I still don't feel too happy about the new arrival, she cries and screams too much for my taste... So we'll see what happens.

My nurses have been having a bad time as well, their hubbies keep having serious health issues... I pray that Lat and Mr. Mars heal fast. Their ladies really love them and need them.

So... I am in no mood to talk much, but here's a family picture as a small treat! Enjoy!


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THE MOVE, MY IEP MEETING, THE EYE & MY NEW SISTER

Days have been VERY hectic, and going VERY fast. It has been a while since my last update, but it is all because many things have been going on. We got an eviction notice, an intensive still fruitless job hunt for Mommy and Daddy, medical appointments for me, medical appointments for Mommy, appointments with Special Education, intensive house hunt... Yup, there has been action and drama all the while! My life is an ongoing thriller. So, let's sum it all up:


THE MOVE

During May there was plenty of stress in the house. Mommy and Daddy were all over at meetings, appointments, filling paperwork, reports, making phone calls, trying to find help… They think I didn’t get a grasp of things, but I did. I knew what was going on. I just did all I could: Pray hard and leave everything in God’s hands. Why is that so hard for older people to do? I mean, it REALLY works!

By the third week of May our family got a ray of light. Housing was finally feasible, the eviction debt was fixed, and the government agency helped with the move. We finally moved to a new place at the end of May. It is a smaller apartment, but I got the best deal as now I have the room with a walking closet, so all my stuff is nicely organized and not all around the house. And we now live in a first floor, which is best for me (easy access in case of medical emergencies, and hopefully now I can actually qualify for a power chair!). The location is a bit of a wild adventure, but we will survive. All in all, we are all grateful that we have a roof over our heads and we are all together (which is the ultimate important matter). My little sister is coming soon in late June, and I’m glad that we will all be safe.


IEP MEETING

I’m turning 3 years old in August, so that means that I will start my Pre-K in September. Meetings are being held for the transition between Early Intervention and the Newark Public Schools’ Special Education program. We’ve had some meet and greets, and so far everyone seems nice, positive and much helpful. At least Mommy is happy with everything that has been proposed, and we all know Mommy is very hard to please.

The Individual Education Plan meeting went smoothly. I expected some bumps in the road, but was pleasantly surprised that at least the first stepping-stones are laid out nicely. The original intention was to have me go to school, trying out an integrated approach. Mommy and Daddy gathered all paperwork for that. But just two days ago we got letter from my primary SMA specialist, Dr.Bach, and he strongly suggests I have video-conference attendance as the school environment will put me in high respiratory risk… So, I was immediately placed as homebound. I was a bit disappointed, but looking at everything from a broad point of view this is better for me right now… I have to get used to new people, new learning challenges, a new baby sister… In the beginning all may get overwhelming, and is better I take it easy and go step by step… I’ll conquer the world in the end, anyway.

The IEP plan so far includes a teacher coming to our home 5 days a week for two hours. PT, OT ans ST will be at home too, as it has been all this time. The plan will focus on mastering basic communication boards, Tobii and PECS, plus the basics. They will include a note so if I get hospitalized I can at least get my teacher to go see me and have my sessions at the hospital. And we are all happy that all elements can be in English and in Spanish. This goes hand in hand for the goals we had on our own for now: Mastering the Tobii (so online school may be a future possibility if things go as we all expect), and a power chair (now we will try to apply for it since we are in living now in a first floor).


THE EYE

The biggest topic for controversy during May and June has been my eyes… Out of the blue I got a stye in my right eye. It went away then appear on my left eye… then it turned into a chalazion… The problem is that it grew, multiplied, and now I look like I was actually filming Fight Club 2. Antibiotics have not helped, and so I have an ophthalmology appointment on Friday to see if the eye matter is finally solved. This has been the most anti-diva-like experience of my entire life!


MY UPCOMING SISTER

So… New apartment, new learning plans… and new sister… Mommy will have her c-section next Wednesday June 23rd, so I am very thrilled about it all! I hope to meet Kalisto soon during the weekend! I know that we will get along just fine, as long as she follows up on my plans. My 1st shift nurse will be around for more hours those first days, as Mommy will have to be three to four days in the hospital. The plus of it all is that I will also have Granny Milly around for two weeks. So… the last days of June will definitively be quite something! I also heard a rumor that my Auntie Edni may be around by the 4th of July… Let’s see what happens.


GOD:

May everything remain well with Little Kali. Keep Mommy and Daddy and me in your hands, so we all remain safe and well. Protect us, keep blessing us, keep guiding us, and keep bringing hope into our lives. May health and happiness grow in our family. Take care of all our friends and family, and help everyone who needs You. Thank you for always answering my prayers, for keeping me safe, and for surrounding me with so much love.

Amen.

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D&D: DOCTORS AND DRAMA!

Before I forget to say it: HAPPY MOTHER's DAY! (Belated, but better late than never!). I made sure Mommy smiled, and Daddy made sure that his divas were happy, so it was a good day. Now to my news: This month started out with a smooth visit to see Dr. Bach. I was checked-up, and everything about me was updated. I’m happy that I’ve been healthy and ailment free, so the basics remain the same. Because of the cold weather and the ups and downs of the overall climate I cannot be without my vent further than an hour, but hopefully that will change in Summer. Spring has been very bad to me and to mommy, our sinuses getting swollen and pollen really bothering us… Can’t way to catch some sunshine!



This week I travelled to the Columbia University to see an endocrinologist. That was an appointment made 8 months ago, so I was quite excited to finally be able to be there! They drew some blood to run some tests, but couldn’t do the hand x-ray and the CAT scan because of out of state insurance issues, so those will probably happen either at Children’s Specialized or at UMDNJ. Seems like mommy and me share the same fate… Everyone wants to probe us for things we don’t have. Oh, well… better to have the empirical/statistical/lab tested proof so they all leave us alone!



School scouting for me will begin soon. Mommy has been researching all schools in the area, and all alternatives available… There’s plenty of uncertainty because of the large amount of kids in the classrooms and what that implies for my health safety. So far Horizons from CPNJ seem to be the best bet for starters, but that is still pending. The main targets for my Pre-K is to gain maximum control of my communication device (when it finally gets here), of my other adaptive gadgets, and of my power chair (when it is finally ordered… first we need a handicap-friendly home in a first floor or with accessibility).



Drama has also been present in our nurses’ lives. Nurse Peronette’s hubby had a heart attack last weekend. We are sending out many prayers and good thoughts so his health comes back. And Nurse Mashaila’s hubby was also in the hospital. Prayers sent his way too. We hope things can get back to normal, whatever “normal” means… We’ve been hosting these substitute nurses that don’t cut it… I really want my A-Team back!



Little Kalisto should be arriving to this world around June 25th via C-section. I’m so excited about it! Mommy is very stressed out, and Daddy is trying his best to get plenty done in so little time. From what I hear there’s been some difficulties with housing and job hunting, but one thing that is always constant is that Mommy and Daddy somehow manage to do what they focus on. I know they’ll push through. I just wish I could help somehow… I know managing the overall family things and then my stuff must be overwhelming. They are my champions!



God: I pray for unity and peace. May we experience bliss and certainty, may problems find a sound solution, and may I keep on been healthy so things keep moving forward. Bring what is best for all of us into our lives; we are in your hands. Bring the gift of healing to everyone who needs it, and compassion and love to those with hearts hardened by daily events. Thank you for all the miracles big and small that you bring into my life, and to my loved ones. Make me a channel of Your peace and of Your will… Amen.




Lord, make me a channel of thy peace;
that where there is hatred,
I may bring love;
that where there is wrong,
I may bring the spirit of forgiveness;
that where there is discord,
I may bring harmony;
that where there is error,
I may bring truth;
that where there is doubt,
I may bring faith;
that where there is despair,
I may bring hope;
that where there are shadows,
I may bring light;
that where there is sadness,
I may bring joy.

Lord, grant that I may seek
rather to comfort than to be comforted;
to understand,
than to be understood;
to love, than to be loved.
For it is by self-forgetting
that one finds.
It is by forgiving
that one is forgiven.
It is by dying
that one awakens to eternal life.
Amen.

-Saint Francis's Prayer

APRIL ADVENTURES

Good stuff, hectic stuff! I’ve been a busy bee, traveling and learning and loving it! Well, for a whole month I’ve been going with my parents to Kessler for assessment and training on the Beckman Motor Oral Therapy and today was the last session. They got the information on that therapy three months ago, and were doing it daily, but wanted to be certain that they got it all right. And they definitively have! By now, mommy and daddy are experts on doing that stuff to me! I just love it. My favorite part is getting the gum massages… I fall asleep while that happens. It is so relaxing! The tongue exercises are a bit weird, but nurse gossip says that I am fighting the suction machine a bit with the tongue so it seems to be doing its magic.




Mommy’s birthday was on April 8th, and we celebrated with mofongo and cake. I got a taste of the sugary stuff, but that is not my preference… I like tastes that are more fruitier and bitter. I also got a taste of some cheesecake, but was indifferent to it… Maybe I was just too involved with the Cebú song… Yes, Mommy is happy that I have another favorite besides the Wonder Pets. Veggie Tales are getting there… I love the silly songs! Anyway, Mommy also started another studying adventure… I wonder if I’ll be such a nerd when I grow up. She seems to enjoy studying too much. Oh, well… to each its own.




On Friday I’ll have my physician appointment, hopefully the headrest issue of my wheelchair and stander will be addressed. Next week there’s a date for the education evaluation. By the end of the month I also have a PT evaluation for aqua-therapy, hopefully that will be a positive assessment.




Days have been quite busy, and this going out business is awesome but quite taxing… I can’t complain, I am definitively going places! And this is only the beginning… I am grateful for all the things God has put before me. He has made sure that I have all I need, and that true love surrounds me at all times. I am grateful for my thoughtful caregivers, friends and family. I am also very excited about becoming a big sister! I can’t wait to have the little brat around me! Hopefully she will be my bodyguard/bouncer (yes, from what I’ve heard she’s quite a kicker). Oh, I already have many plans for her… Together we’ll rule the world!


VIDEO: TAKING DEEDEE FROM THE LIVING ROOM TO HER BEDROOM



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FIRST TRANSITION (EI to Special-Ed) MEETING

Everyone knows I’ll turn 3 years old in August 17th, so by now things are happening to make the right preparations that such an event brings! Besides the obvious (me turning a year older, which means that I’ve won another battle in the ongoing war against SMA!), here it also means that I will be ready for Pre-K. This is very exciting! I love books and animals and learning, so I’m looking forward to the new things that will come my way! Hopefully that will also mean field trips, I’m a sucker for some fun in the sun.

Mommy and Daddy have been following-up with Helen Hayes Rehab to see if my eye-gaze communication device (the Tobii P-10) gets approved to fulfill my needs. We all know this will open so many doors in matters of my being able to clearly communicate to my people what I want and what I need. Besides this core purpose, with the Tobii I will be able to learn and expand my horizons: What I cannot do with my hands or physically, I’ll be able to do “virtually” through the computer and through Internet. I envision that for my school years, whenever I have to be homebound I will be able to attend via video-conference and actually see my peers! And later on, I may actually attend school or college through online schools, just like Mommy! But I will try to hold my horses… Back to the basics ( I know, I am always dreaming big, but thanks to that is that I am alive!).




My main goals for my PreK will be actually being successful controlling the Tobii both for communication and for basic education. I hope I have no trouble getting it now… Another goal will be successfully controlling my power wheelchair when I finally get it (until we move to an accessible apartment or house, that is on hold. Living in a 2nd floor with no accessibility has been quite a hindrance to some of my life skills goals… but at least I live under a roof, so I’ll stop my whining). Of course, by now I know my colors and shapes but that will also be reinforced too in my new learning quest, along with so many other things that I’m curious about! But I know… I keep getting ahead of myself…

On March 25th, the first Transition from Early Intervention to Special Ed reunion took place. It was just the first of many more reunions to come, and very exciting for Mommy and Daddy. My team met at home (Debby, Pat, Ellen and Maya from Early Intervention) and the special education team was there by phone conference. Although I was in my room, I was carefully monitoring everything they said, sending my faithful nurse to spy for me. The special ed people got a basic background about me from the perspectives of the PT, OT , developmental and of course Mommy and Daddy. Mommy and Daddy expressed that they want me to be able to experience the world and get every opportunity I can to live to my fullest and that they strongly believe that through technology that main goal is completely possible. They want to try my being able to actually go to school, and described my daily routine and the main things I can do. NurseMashaela almost made me cry when she talked about me… The meeting ended in a good note, and during April the Special Ed people will visit me in person. I’m looking forward to that!




IN OTHER NEWS

Mommy and Daddy have been working on some other things for me. Since the beginning of the month, they have been performing Beckman Oral Therapy on me, both after the morning respiratory treatment and after the one at night. So far, so good. They say their main goal is to see me smirk on next Xmas. That may seem like such a silly goal to most people! And it is quite a goal and challenge for me! Mommy got an appointment for me with a Beckman therapist so I get the complete evaluation and they get hints or further details they may be missing (yup, they are always up for training… They are so relentless and tireless when it comes to me!).

Also, Mommy & Daddy have been trying to get me in an aqua-therapy program. They keep getting information about swimming courses, which is NOT what they aim for… It has been quite frustrating, until the Augmentative Therapist clarified the small detail they were missing: You must ask for PT in the pool, or they will think aqua-therapy is swimming. Gosh! We don’t know how people thing anything realted to therapy is swimming, but… well… New calls asking for the “PT in the pool” at least landed me an evaluation for that purpose in late April. We’ll see the outcome (I know it will be positive… And how I miss doing my exercises in the water!).

So, Holy Week is next week and it brings on an appointment with my pediatrician and the Beckman therapist, then Easter will be followed by an appointment with my physician for growth/AFOs/equipment appraisal, the Special Ed evaluation and the PT in the pool assessment… The excitement never ends!

GOD: Thank you for carrying me in your hands all this time. Thank you for giving me the strength, courage and will to live and be happy about everything that comes my way! Thank you for my family, especially for my new brother/sister… (finally, a play mate)! Thank you for bringing hope and dreams, and making it all come true. Thank you for everyday blessings, for so many privileges, for so much love. I put before you all the families that need you, so You may provide them with the blessings they need, healing, peace and love. In special, I ask you for much health for Emily so she truly enjoys her magical vacation, and for Stella so she has no more pain in her legs. Amen.

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