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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