Sunday, September 5, 2010


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!

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…

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!

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.

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.

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…

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…

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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