Friday, May 17, 2013

Building his own path

For the first time after 2 years, I feel things are truly working for Tommy again. I have been able to put in place everything Tommy needs for a true recovery. I have carefully planned and requested support from the School District to the Department of Mental heath, from my family to my husband's family to stablished an action plan. Even the place where I work has a part in my action plan because they allowed me to change my schedule, so I can have time to work on Tommy's neuropdevelopmental program. We will start the neuodevelopemental program that it is intense, requires consistency and time every single day of the week, but I am so ready for it. We will be working with a well known neuro-developmentalist. The Neuro-developmental Approach is individualized to address Tommy's unique needs and challenges to help him to get the next level.  I am also waiting for the opportunity to start two new treatments/programs, one is a program based on neuroscience and the other program is focused on emotional growth (Yes, I am non-stop like Francis). 


Unfortunately, the state where we live is behind in the latest private paid treatments and programs for kids with special needs, but thanks to technology we can have accesses to them. As far as education, our state is also behind nationwide. Its overall grade in education was a C this year, up slightly from last year's grade of C-. But I have found a balance in this matter, so as a parent I am deeply involved in Tommy's education and his personal growth as an individual. I support his IEP team in every possible way, regardless I work full time and I have kept going with personal goals I have set for Tommy. His team has even commented to me that they are not used to have parents so involved in their kids education as we are.


Regardless what I have planned for helping Tommy, he is the one who is building his own path. It makes me feel so good to know that Tommy has found a friend. It is amazing how they complement each other. It reminds me when I was a child because my first friend was actually my cousin who is  about a year younger than me and it is a boy. Tommy is one year older than his friend and his friend is a girl.  It is the first time both of them are interested in other kids rather than their siblings. When he hears her name, his face lights up and the same happens with her. Regardless the challenges they both face, they are finding themselves as individuals capable to build strong relationships.


I couldn't pronounce his friend's name at first, 
but I got it after asking him: What is your friend's name?

Watching them together is amazing!
The date we took this picture, we went over to celebrate Ezmae's birthday.
Tommy didn't show sensitivity to the sound of the happy birthday song. 
Her birthday marked the beginning of Tommy starting
to overcome his auditory processing issues. 

At school, Tommy has done an enormous progress in a short period of time. Yahoo! This doesn't surprise me, because it is how it was before all this craziness. His teacher is very impressed how he is communicating wants and needs, being part of the group, enjoying to practice writing his name and participating in the class. His vocabulary keeps increasing!  Currently, he keeps an IEP goal to maintain his speech skills because he still shows oral muscle weakness; but, Tommy will lose* his services for speech at some point because he can articulate words very clear with beginning and ending sounds, as well as articulate phrases with continue sounds, which means he has good speech fluency; howsoever, he will keep the services for language development. His gross motor have speedily improved recovering and surpassing all gross motor skills he lost in period of 4 months and he is now working on catching up. This kid is amazing!



We have a lot of work on Fine Motor /Self-care skills because most of the skills he lost haven't came back. But I found the cause, the reaction he had to the antibiotic that caused a massive muscle weakness it also cause ocular muscles weakenss —Vision and fine motor work together. Tommy began to turn his eyes in, one eye more than the other after the hospitalization. So we took him for a check up last years, and his former optometrist said it would go away. If Tommy won't have hypotonia, I would agree with this optometrist.  But after a year, I didn't see improvement rather than getting worse, so I decided to take action. So we are working now with a developmental optometrist who was recommended for the Sensory Therapy Center where Tommy receives private paid services.  Tommy was seeing for the Developmental optometrist on April 27, who determinate that Tommy's vision issues is because he has ocular muscle weakness that it is causing farsightedness. Before the hospitalization, his former optometrist told us his farsightedness had despaired –this another proof that the medication cause an overall muscle weakness. His new optometrist prescribed glasses for Tommy to avoid that his eyes keep turning, so his focus system doesn't get affected. We also are doing vision therapy exercises. His vision issues were affecting his performance at school, but his teacher agrees that Tommy knows more than what he shows, but his focus issues it is interfering with it. She is aware that Tommy can count  in English and Spanish, saying his colors, but when it is time to test him, he chooses not to say a word. The glasses has been like a magic wand, his focused during structure activities improves while he is wearing the glasses resulting in better fine motor skills during structure tasks. When Tommy was a toddler, he had a period where he had an amazing attention span, even his former therapist were amazed of it. I have a good feeling seeing him going back as he used to be with fine motor activities.

Tommy wears Miraflex glasses.
They are safe for kids to wear because
they are made by a flexible material that doesn't break.

We took a break from the swimming lessons for about 5 weeks, so we thought he could regress; howsoever,  his best performance on the swimming pool was the day he came back. Tommy's love for swimming is amazing. He is now practicing free-diving, which is something he discovered on his own. He does use the breath-holding technique really good and practices in the bathtub every time he has an opportunity.

 I am putting all these things together for him, but he is the one finding his way.
This is just the beginning of a true and full recovery!



THE SKY IS THE LIMIT!
_______________________
*Even when Tommy loses his services for Speech because he won't need it from the educational stand point,  I have in my action plan an innovative oral motor treatment to treat tongue trusting because medical procedures are necessary to treat tongue trusting. A computerized test determinate how the oral structure (muscles and bones) is functioning; therefore, the specialist can find specific areas in the mouth that need treatment that are not usually spot with observation. This is an advanced treatment, which means is expensive; howsoever, this won't be until Tommy is  about 7 or 8 years old so we have time to save money.




Thursday, May 9, 2013

WARNING! The antibiotic Azithromycin can be life threatening


It  is not the first time I am going to post about Azithromycin, the antibiotic it was giving to Tommy to treat him from the pneumonia. The doctors were never sure he actually got pneumonia while he was hospitalized two years ago, but they gave it to him. One of this medication sever side effect is muscle weakness, but it goes beyond that, this drug has a WARNING from the FDA because can be life threatening. If you have heart issues, know someone with heart issue or muscle issues (the heart is a muscle) please pay attention to the following warning:


WARNING TO EVERYONE WHO HAS HEART ISSUES AND MUSCLE ISSUES!



Safety Announcement[3-12-2013]   The U.S. Food and Drug Administration (FDA) is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias.  This communication is a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart. Click here to read the complete safety announcement from the FDA official website.

Thank God that Tommy doesn't have heart issues, so I don't want to even think what it would have happened when this drug was given to him. More than ever before, I feel strong in not allowing doctors giving any type antibiotics to Tommy until we get the DNA test done. I will request to our local Down syndrome for Checking Tommy's heart because the antibiotic went all over his body, so I want to make sure his heart muscle is working properly.