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.

~