LIGHTING A CANDLE: HOPE FOR ALL SMA KIDS!

For all if those we lost to SMA and those still fighting:


Hope never ends...


We will find a cure!


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ON SUNDAY 15th AT 4:00pm: JOIN OUR CELEBRATION!

CELEBRATE DEEDEE's 3rd BIRTHDAY!!! Family and friends may join us as usual, through video-chat. Go to my BIRTHDAY CHATROOM and enter the password (bday). You can just enter a nickname (blank on the right side)and then select go.

My birthday is in August 17th, but we are doing this chat on Sunday 15th so all the people that love me so much may actually be able to see me (I know most people work on weekdays). So... No excuses! If you are in our area, you may pass by. If you are back at home, the family gathering will be at Auntie's Place as usual.

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13 DAYS & COUNTING for B-DAY

In just 13 days I will turn 3 YEARS OLD! Imagine my excitement! This marks some changes in my lifestyle, you know? I will stop receiving services from Early Intervention, and thus I will definitively miss my therapists Pat, Ellen, Maya, Jaimie and Tracy (I love you guys, and I hope you all keep in touch!). This means I will begin my school years attending Pre-Kinder being homebound. I still have to meet who will be my teacher, and I just know that beginning September I will have a teacher from Monday to Friday for two hours… and new therapists for PT, OT and ST (that should prove interesting). So, this birthdate will bring many gifts of change and challenge!


During July everyone has been going crazy in the house, thanks to the little banshee that arrived on June. Mommy has been more patient than me, I tell you! Daddy has handled the little one, my respiratory therapies, training the new nurses, and taking training as he got a new job (yay for Daddy!). Mommy just passed her latest class, and now prepares to tackle the dreaded concentration courses (what a bookworm!).


August has been “getting back on track” month for me. I just got an eye doctor date today, just so he would check my eye, making sure it is ok. Funny thing is that medication did not help, but the wise advise of an SMA parent had the simple answer: My eyes were extremely dry thus creating the styes and so she suggested an over the counter eye gel that did the job just right (GenTeal gel). Next week I’ll have an MRI, chest X-ray and a hand X-ray so I have things to show and ask for answers when I go to the SMA Clinic in September and see the neurologist, endocrinologist, pulmonologist, nutritionist, and dermatologist. By the end of month I should see the rehab technologies expert at her NJ office, to see if my wheelchair and stander issues are solved. It is a busy month, and September already looks very full from my perspective… So, no more boredom!


I’ve been feeling cranky and blue for so many reasons! Starting with the new brat, then getting used to new faces, then coping with old faces… then handling people that doesn’t get it when it comes to me and my illness… All is very stressful and unnerving, but I know that whatever goes on Mommy and Daddy and my entourage do everything for me. After all, it’s all about me, right? But besides my high ego, know that I appreciate all you do for me, and all you stress for me. I know things are not as easy as they look before me. I love you all!


God: Keep all of our lives in your hands, cradle us so our troubles are soothed and grant us wisdom, courage and will to go on no matter what. Guide us, and bring into our lives just what we need. Protect us, and help us… Thank you for granting me another year in the lives of those who love me. Thank you for allowing me to teach many lessons to those that listen to me with an open heart. Thank you for so much beauty and happiness around me, for I walk in beauty every day with my family. Thank you for the gifts of happiness, peace, and above all… LOVE.


Don't miss my birthday! It is in August 17, but we will probably celebrate it on Sunday, August 15. Keep tuned to this blog for more details about it! From what I hear, it will be super!

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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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