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.
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