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!

Word of the day "Supplements"

Hello dear readers,

My baby has been the source of joy in my life but sometimes I still end up worried or scared about what his future is going to look like. When I am with him, he is just a baby, my baby. But when I am at work or looking at other peoples babies, I end up worrying about everything. I know I am a "worrier" by nature, always have been and probably always will be but I feel like the more I educate myself, the more I end up feeling lost.

Upon plenty of research, My husband and I have decided to start Laksh on Nutrivene-D and slowly add the entire regime of supplements. But the more I read, the more supplements I come across. Someone in our closed FB group for mom's put this pic up today morning and I found it hilarious. Starting TNI is overwhelming as hell and on top of it, I keep reading about food items that are a no no for babies with DS. What I want to know is, where can I find this list of things to-do and to not do? I want to give my son the best possible support but how do I know if he needs papaya powder or mango powder? How do I know if he needs ECGC or not? Lots of mothers who have been doing this for a while make it seem easy but I know it took them a while to get there and most of them are happy to help.

There is this wonderful mom in that FB group I was talking about earlier, let’s call her SB (not sure if I can mention her real name) who was kind enough to share her protocol with us. Just to give readers an idea if you are blissfully unaware of the sheer amount of hardwork or dedication I am talking about. This is what her day looks like;
 #myschedule
                                                 8am - Nutrivene D
                                                           Papaya Powder
                                                            Enzymes

                                                  Noon - Polyphenol Support Formula
                                                              Longvida Curcumin
                                                              Enzymes

                                                    4pm - Nutivene D
                                                                Papaya Powder
                                                                Enzymes

          8pm - Polyphenol Support Formula

Longvida Curcumin

              Nutrivene Nighttime Formula 

Melatonin
Blueberry Polyphenol
Lycopene
Setria Glutathione
DHA

And this is just her schedule. Some mom's use other supplements like green tea extracts, mango

powder, Resveratrol, Omega 3 fatty acids, etc.

I love that there are people like Dixie Lawrence and Dr.Elizabeth Hesse Sheehan who are tirelessly working to come up with these supplements and ways to help babies like mine. I know it is selfish of me to say it. but I wish it was a little easier. I wish we didn't need to use so many different supplements in trying to down regulate these over expressed genes. Here is a list of those genes.

SOD1

RCAN1

CBS

DyrK1a

ColVIa

APP

APOE

GART

MicroRNA 155

FoxP2

S100B

What happens if i don''t address the gene over-expression in T21?
People with unaddressed T21, in general have a predictable course of neurological and cellular degeneration.  Dixie Lawrence, Ds biochemist states:

"Because every single person with Ds has at a minimum the critical region of chromosome 21 in triplicate. This means all of our children have the same genes over expressed and are at the very same risk for associated illnesses and diseases including cognitive decline and Alzheimer's Disease. It is the rare Ds individual who survives mentally and physically intact to age 55 and beyond. It is so very rare that it makes the news. Ever read a news story touting the headline "Normal Man Survives to Age 75?" No? It is unlikely that you ever will because normal people, barring illness or accidents, usually live to 75 and older. It just isn't news worthy.

Studies show that by age 40, 100% of all untreated persons with Down Syndrome have Alzheimer's pathology. This means plaque formations are already developed in the brain, with or without full dementia. But, do not count on your untreated child functioning well until age forty. That is only an average. Plaque formation often develops in the first decade and by the early 20's many young adults experience serious decline associated with early onset Alzheimer's Disease."

 You may have a lot to lose, and everything to gain, in the targeted addressment of Down syndrome. Courtesy (http://www.oneextraordinaryjourney.com/trisomy-21-and-why-treat-it) 

Moral of the story is, we have received our order of NVD and are ready to get our feet wet. Laksh, Hubby, and I are on this journey together and I am sure that slowly we will be able to get a firm hold on this and soon will make it look like a piece of cake. Until then please send some good energy our way dear readers.

Today's thoughts are tomorrow's actions!

My daddy strongest

Hello dear readers. It has been a minute since we found out about Laksh's diagnosis and another since we accepted it. It has always been a little easier on my husband. I would like to argue because he had no idea what down syndrome is but the truth is, it is because he knows what it is to be a father. 

Right from the first time my husband and Laksh saw each other, it was clear that theirs would be a bond to be proud of and sometimes envy as well. "The heart of a father is the masterpiece of nature."- Antoine-François Prévost, I have come to realize how true this is. I remember when we first found out, I was still being a negative Nancy (sorry if there are any Nancy's reading this, no offense intended 😊) and kept telling my husband things our baby might not be able to do. Every time I would say something he might not be able to do my husband would tell me another way of getting that thing done or how it might not even be something Laksh wants to do. Like, I told him Laksh will not be able to drive a car (which I now know is not necessarily true) and he said I will get him a driver. I realized in that moment, how lucky Laksh and I are to have such an amazing man in our lives.

He sleeps the best in daddies arms. He loves hearing daddy sing to him or even just discuss the traffic. He loves when daddy is the one who wakes him up in the morning or in the middle of the night. He loves when daddy reads to him or when daddy brings new toys for him.

                      

The love a father has for his son, a small version of himself, is so beautiful to witness and so pure of heart. I m excited about the our future as I have been blessed with an amazing husband and an amazing son.

The light of my life

I know my last blog was a bit more focused on me and less on Laksh. I promise I will do a better job of talking more about him and his day than me.


October 19th 2017 was my baby's first Diwali (For those readers who are not familiar with Diwali, here is a website that beautifully explains it; http://www.diwalifestival.org/diwali-in-history.html ). Diwali has always been one of my most favorite time of the year, second to Christmas of course.

That day started like any other. Laksh woke up 3 times in the night to feed or get changed or just to snuggle (like he does every day). He did not know this is a big day for him but I did. In my head, I was trying to figure out a way to make this Diwali special for him. Of course, he is too young to know what it means just yet but I still wanted this to be something awesome for him to look back to.

As the day went by, Laksh and I got caught up in our day to day activities and the focus on Diwali kept slipping. Diwali is where spring cleaning meets Christmas but neither was the house clean nor was it brightly lit up. Hubby was at work and I was enjoying the last of my unpaid maternity leave with Laksh (that is a whole other discussion) when I got a minute to breathe and saw the clock. It was already 4.30, Hubby was still at work and everyone else was napping (excluding Laksh of course). I called hubby and asked him to leave quickly while I started deep cleaning the apartment like that is the last thing I would do. In two hours, we had the apartment cleaned up and decorated, sweets made for the pooja, and showered and dressed up versions of ourselves were ready as well.

Electric tea light candles and string lights

Paper lanterns placed all over the apartment

Laksh's first Diwali gift from his older sister Sheen

Sweets for pooja and the mandir

            My mother (type A personality just like me) bought us some matching traditional outfits to wear



Then began the pooja (prayers) and celebrations. If we would have been in India, we would have lit some firecrackers as well. Did I forget to mention firecrackers? Well in that case, Diwali is mix of Christmas, 4th of July and Spring cleaning with plenty of firecrackers (which now I am against, global warming and all).

We got so caught in these minute preparations that we simply forgot to cook any dinner. In a way we started (or were forced to start out of severe hunger) our own tradition of eating out. Diwali dinner would be a 'family dinner' just not in the house. When Laksh is older, we will tell him how well thought out his first Diwali celebrations were and how we intentionally started this tradition of eating out.

Diwali is a symbol of triumph of good over evil and light over darkness. In a similar fashion, my precious baby has helped me replace all the darkness that years of ignorance had created with the light of awareness and acceptance. Thank you my preciousness.

Memories of moments celebrated together…….
Moments that have been attached in my heart, forever…….
Make me appreciate you even more this Diwali.
Hope this Diwali brings in Good Fortune & Abounding Happiness for you my darling boy!


PS, adding some pics about his first Bhai Dhuj as well (http://www.hindustanlink.com/festival/bhai-duj-history.htm)

First day in a park

Rattle struggles

  
I have been thinking about different things that I can do to make sure my baby gets all the help he needs and all the support I can summon. Trying to come up with creative and fun ways to get some exercises started while we wait for his early intervention to start (evaluation happening soon). That being said, he is not even three months old so all he really wants to do right now is eat, sleep and repeat (with pooping in between of course). But as he is getting older, he stays up for longer and I am bored of just the play mat or the music mobile or trying to get him to hold a rattle constantly worrying he might throw it on his face.

Waiting patiently to be taken to the park

One such afternoon, it was nice and sunny outside while Laksh and I were sitting inside trying to find activities to do. We rocked some tummy time, spend time kicking the key board on his fisher price play mat and also tried playing with the rattle for a bit. We were also done with his body massage and bath time. Now, I had him on a boppy and was playing some Mozart lullaby for him trying to get him to sleep. Suddenly, I realized we could go to the park. Not sure what we would do there because he isn't old enough to sit on the swings yet. I quickly got him all bundled up and strapped in the stroller while willing him to stay up. He kept looking around trying to figure out what in hell's name is happening suddenly. Why is my mom running around like a headless chicken frantically trying to get my diaper bag ready for this last minute excursion. As a new mom, the only thing I don't carry on trips is his crib. I know I know,  by the time we have a second baby I would be a pro and might just leave with a spare diaper tucked into my jeans but for now its going to be this way.





Once he was all secure in the seat, we breezed out and practically ran to the park which is just a couple of blocks from our apartment. All the while I am talking to him trying to keep him interested enough to stay awake. As we make our way to the park, I notice his eyelids getting heavier and his blinking getting longer, as in the 'eyes closed' part of the blink kept getting longer and longer. By the time, we made our grand entry to the park of course he had fallen asleep. His aunt and I looked at each other and wondered now what? Well, we got some nice 'Vitamin D time' for him while the two of us, video called all of our family members showing them how he is rocking his first day in the park. We exchanged smiles with other parents whose children we actually playing in the park. At some point, I thought if only there was a nice patch of thick green grass, we could get him down on the blanket and let him relax in some fresh air. But as you can see, in this concrete jungle, most of the parks follow a similar theme.

I sat there contemplating his future (like I find myself doing more often these days) and scared of the unknown. Thinking of other parents who have raised a child with down syndrome before us and of parents yet to come. Thinking of not so good things that doctors and other people have told me. I remember one OBGYN telling me, some kids with down syndrome are able to read, walk, talk and be some what independent these days. One parent with a 26 year old told me how her child can read at grade 4 level and I thought to myself, this is not okay. I want my baby to be able to do everything in life to the fullest and not be okay with these limitations society and medical professionals are keen on implementing on them. Every day, I see others kids doing so well with inclusion  (thanks to https://rubysrainbow.org/ I am aware of this fact) and keep thinking when Laksh would start school, will we be able to find such a school or will I be able to convince the school to become inclusive and help mold a more productive environment for learning. I am his advocate and I want to create a world full of opportunities for him and not hurdles.

Anyway, after sitting there for some more time, I pushed all these thoughts to the back into the 'dwell on later' part of my brain. We decided to walk around to get some exercise for ourselves, while he continues to nap. As we started walking and making our way out of the park, he starts to stir. Little did I know, the only way to get him up is to physically be outside the park. Once we were safely outside the park, my little one wakes up giving me the stink eye.

It has been a while now since we left for our mini adventure so we continue making our way back to our apartment. When we reach home, and I remove him from the stroller I realize the stink was not limited to just his eye but also his tushy. Yes, my precious baby made history in his debut trip to the park. He did not do anything kids usually do in the park and it seemed like he preferred being any where but the park. The only thing he did in the park is sleep. He did his own thing. I know this may not be a big deal but in doing so, he made his realize that he is going to create his own path and it is okay. Everything is going to be just fine. He teaches me how to enjoy the small things and live in the moment.

Leaving you guys with this beautiful quote I read online.


The moment a child is born,
the mother is also born.
She never existed before.
The woman existed, but the mother, never.
A mother is something absolutely new.

Rajneesh