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. 

To supplement or to not supplement

Hello readers,

As you may know, we started Laksh on a small dose of nutrivene a couple of weeks ago after contemplating for a while. I researched a lot about nurtivene and also spoke to my baby's pediatrician and nutritionist who both said it is safe but because he has had two abdominal surgeries to be a bit cautious. I understand that this is not a "magic cure" for over-expression of the genes and that there is no such thing as curing DS. But what my thought process has been so far is, as long as it does not harm him and may have a beneficial effect, what is the harm in trying?

 All through pregnancy, we are told over and over again to take our pre natal vitamins even if we are eating a varied and healthy diet. So why is it different for our babies? Laksh has beem on a multi vitamin since being discharged from the NICU as he was a premie (and would have been the same for a typical baby as well). Once the first bottle was over, we only changed the daily multi vitamins to nutrivene.  My Laksh will be 4 months in 4 days and he is on 1/8 tsp of nutrivene (https://www.nutrivene.com/view_item.php?id=43)  and 0.5 ml of baby DHA by Nordic Naturals( https://www.iherb.com/pr/Nordic-Naturals-Baby-s-DHA-with-Vitamin-D3-2-fl-oz-60-ml/23058). 

So far I am not going all crazy on supplements and had planned to take it really slow but a concerned mother pointed out some not so good reviews about supplementation which re started this debate in my mind. Here are some articles and sites that talk in favor or not in favor of it. Most mothers have made up their mind but being a new mom I am still on the fence about it. I just don't want to wake up 5 years from now and wonder if there was something else I could have done to give my baby a little something extra. I am somehow not okay with saying, this is how it is suppose to be and just sit on the side. I want to be able to take charge and help my boy as much as I can so I feel like I am not letting him down. I am doing everything I can as a PT. I have him enrolled in EIP and fighting to get more visits, talking to his doctors about enrolling him in swimming, etc  but as a mother, I am still learning. As a mother, I still need guidance and as a mother with a baby with needs that I don't fully understand yet (at a bio chemical level), I need all the help that I can. So dear readers, please take some time to help this mumma out.




Articles leaning towards supplementation:

http://www.oneextraordinaryjourney.com/tni-start-here

http://donnachi.com/wp-content/uploads/2012/01/Glyconutrients-and-potential-benefits.pdf


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4227691/



Articles leaning against supplementation:


https://junkfoodscience.blogspot.com/2008/03/selling-hope-can-48-special-supplements.html?m=1


https://nobsaboutds.wordpress.com/2017/05/16/ask-the-expert-dr-brian-skotko/



These are just some links but there are many more. I just wanted to get an idea as to which side people are leaning more towards. Please leave your thoughts as comments. Would love to hear from others in the same boat or people with more experience in either direction. Thank you and be kind.

Pic added just for cuteness

Sneak Peak into Laksh's PT session

So Laksh's day started with finally getting sleep after daddy left for work at 7 in the morning. Past two nights he has been waking up every other hour and only sleeps after daddy or I carry him around the room. Yes, it has been super fun getting "the middle of the night exercise". Laksh is making sure mummy gets some walking done, even if it is at 3 in the morning.

So getting back to the point of this blog, Laksh had his PT appointment at 10 this morning instead of his usual 2 pm. So the oversleeping of sorts did not help our case. Laksh and I woke up at 9 (basically slept for 2 hours but 9 is still late for us). Quickly, Laksh and I finished his morning routine and had him changed (diaper and clothes). We were done with his feeding in record time, it was like he sensed the urgency flowing through me and decided to help. He is a good baby.

His PT is very prompt and was here exactly at 10. Today was his 3rd session and Laksh is already showing interest in his exercises and some progress. I have mentioned that before but in case this is the first blog of mine that you are reading, I am a physical therapist and have been doing some exercises for Laksh at home. I also ordered a big red ball for him and have been doing some core strengthening on it.

So today I finally remembered to ask the PT permission to take pictures in the PT session and he agreed so finally I can show what he is doing. First we do some general range of motion exercises for both upper and lower limbs along with scoping (which is mild traction and retraction of larger joints). Followed by rolling and half sitting, make sure that he is sitting at no more than 45 degree.

                                                                                    

                                 

                     

Moving on to some tummy time with he is hands in front of him, kind of getting him geared for crawling.

sorry its a bit blurred but he kept moving ;)

After rocking his tummy time, we then moved onto the big red ball where he did some bouncing, side to side movement, front and back movements and then rolling on it. This was followed by some tummy time on the ball as well. Most of these exercises are aimed at core strengthening and improving head control.

And, I finally took time to learn how to add videos so here are some on the ball. (BTW, it was super simple, literally had to just click the icon that said video. If only I had looked earlier.)

This is my darling baby chilling after a 45 mins nap post exercise

And my cheerleader while I was writing this blog

Hope this has helped. Please feel free to ask questions. Happy Holidays!