Therapy Thursday

Laksh currently has physical therapy twice a week and his PT has recommended we start him with some OT as well. We are in the process of getting that done. There is just way too much paperwork involved for everything and also it is a bit time consuming. Anyway, whatever he needs.

Laksh has been getting therapy for a couple of weeks now, and my boy is doing his best. I try to get him to do exercises on the day he does not have therapy but working full time and spending way too much time traveling to and from work makes it difficult (disadvantages of working in NYC, everything is just too damn far) to get home before his bedtime.

Day one of therapy:

Laksh and mamma waiting for PT to get home

Starting his session with some range of motion exercise

He then moves on to some massage for his back muscles to improve his tone while weight bearing on his arms.

                                                                                                                                                                                           

This is something new that his PT added which highlights his better head control while reinforcing and continuing training his neck muscles to further improve head control

This is just Laksh chilling on his play mat after therapy

Day two of therapy:


Some range of motion exercises for his legs. lease note: both upper and lower limb range of motion exercises are done each session followed by the therapy ball. Have shown only few of the exercises so it does not get too long and repetitive.

This is tummy time along with some lower extremity exercises. Towards the end you can see Laksh look right at the camera and complain to his daddy about how hard we are making him work.

Here he is chilling on his play mat but in a new style where he is now kicking the objects instead of his usual attempts to punch or grip them

Laksh got bored of all the videos his mamma kept taking so he gave me this look.

Hope all these videos are helping you guys. Please feel free to ask me any questions in the comment section. Follow us and spread the word. Thank you guys. Have a nice weekend. 

Highlights of this week

Started Nutrivene D on Sunday

Monday, November 13th 2017:

Laksh has started hitting moving objects (his mobile) and stationary objects (his play mat) consistently and with purpose. Great start to the week despite the fact that I am back to work and missed seeing this the first time it happened. But thanks to my darling SIL, I at least was notified via text message right away and also got a video (which I don't know how to add to my blog yet and no time to figure it out as well)

                                    

Tuesday, November 14th 2017:

Day 1 of PT and my baby rocked it. After weeks of jumping through hoops and calling the case manager every other day we finally got his PT started. Could not take his pictures during exercises but this is him after, passed out in style. Also him complaining to daddy about how hard his day was in the evening.

        

Wednesday, November 15th 2017:

 Day 2 of PT and a visit from the social worker which was more or less the weirdest meeting I have ever had. The social worker was unable to find parking in the apartment so we had a counseling of sorts in her car, parked in someone's driveway. Again no pictures from therapy yet but added some pictures just for fun. We aren't doing anything special in therapy yet, just tummy time and range of motion exercises. I have ordered a therapy-ball for him which I want to use to help with some core strengthening exercises that I want to start for him on my own.

Some tummy time at home

Thursday, November 16th 2017:


My darling baby smiled in response to me and then smiled again and again. Best day of my life. Only regret is I did not capture it but will cherish it for the rest of my life. Note to self, go home from work today and take plenty of smiling pictures but in the meanwhile lets see the trying to hold my bottle and pacifier pictures.

                                                      

Good morning pic

Friday, November 17th 2017:

Gripping the hell out of this new toy mummy bought for him yesterday. I couldn't be more proud. Its daddy's day home with him today and seems like they are having an awesome boys day in.

Early Intervention Evaluation and Nutrivene-D

So we had our early intervention evaluation last Thursday. As many of you know by now, my son was diagnosed with down syndrome in the delivery room. Since then, I have been on a roller coaster of emotions. After the first few weeks of waiting and hoping for all this to go away (the diagnosis of T21, Hirschsprung and the NICU stay) I finally came on board and started thinking now what? What can I do to make sure my baby boy has all the resources he needs to succeed in life, something we would have done irrespective of the diagnosis. I started to research (basically google the sh*t out of things) when I would be in the NICU by his side but not able to hold him because of all the machines he was hooked on to. My google searches changed from, "What looks like down syndrome but isn't?" to "How to help baby with down syndrome achieve milestones sooner?". I came across early intervention (being a PT I had no idea about this) and TNI (Targeted Nutritional Intervention). 

Early Intervention is a federal program for infants and toddlers under three years of age who may not be making progress like other children because of a developmental delay or disability. My son automatically qualifies for this because of his diagnosis but we still had to jump through hoops to get him enrolled. I appreciate how the government has come up with this to help babies like mine but what I don't appreciate is the sheer amount of time it takes. Laksh was in the NICU for the first two months so that got his early intervention delayed in the first place. The day he got discharged we set up a meeting with our coordinator to get all the paper work signed up and start the process. 3 weeks after we did all that our evaluation happened.Now we have to wait again for the report to come in the mail and then they will set up a meeting to decide how often and what all therapies he would need. Once that is done, we would have to wait again to find a therapist who would be ready to come in to see him. So, another month of waiting before he would actually start any therapy. I feel like we are wasting crucial time and need to start something soon. This lead me to NUTRIVENE.

TNI (Targeted Nutritional Intervention), is a protocol of mega-dosages of vitamins and natural products that the marketing promises helps overcome the effects of Down syndrome by using the logic of balancing out the over-expression of the 21st Chromosome. Dixie Lawrence, a biochemist and team member for Trisomy 21 Research, developed TNI 24 years ago using a method to down regulate (kind of like turning off) over expressed genes. I have read lots of stories about how children who are on this regime show signs of improvement sometimes as early as a couple days after starting it. I am almost sold on this and have placed an order for the daily supplements (back order for now due to the increase demand). I understand that is the best place to start and then gradually add other supplements.

This is part of what Dixie Lawrence has shared on a closed FB group, "By carefully selecting nutrients that naturally inhibit certain genes and giving them in the exact order, exact synergy and exact amount, excess genes can be stopped from producing excess proteins. Everything we have done is supported by research. The results are more than impressive. In many cases, they are miraculous. For instance, babies who begin the protocol early and who's parents are diligent in giving it correctly, walk right on time - not at 3 to 5 years. These kids are smart and capable, they integrate into the school systems without so much as the blink of an eye. They grow up verbal - often multilingual, get honest to goodness real diplomas, go to college, drive cars, get married, move away and make you wonder where those baby years have gone.
Your child deserves this chance in life. So do mine. I have a daughter and a granddaughter both with DS. Both are beautiful, intelligent girls. My daughter graduated in the top 5% of her regular high school (not special ed) and went on to work as a teacher's aid for deaf students (she herself, is deaf) and then to become a Certified Life Guard. My granddaughter is only 12 and she is an excellent student, fully integrated into all regular classrooms. Her communication skills are normal. Her grades are terrific. And these two represent only a few success stories of kids who receive the appropriate treatment."

Just a helpful link:
http://trisomy21research.org/

There are some other therapies that I have read about but no idea how it works.This is a link on the NDSS website that talks about these alternative therapies, http://www.ndss.org/Resources/Therapies-Development/Alternative-Therapies/.

This is also a great website to look at http://www.dsdiagnosisnetwork.org/  created by Jen Jacob. I found this very useful.


                                                                

Laksh looking overwhelmed by all the information in this blog. Sorry about that dear readers. Tried to be as concise as possible. Let me know if there is something you want me to talk about in particular. Will definitely update about how Laksh reacts to Nutrivene-D once we receive it .