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

Wonderfully made, wonderfully me!

Just wanted to share this storybook I came across called Wonderfully Made Wonderfully Me by Brandi Berkhimer. I instantly fell in love with it. A lot of times people wonder, if there is a way to explain to children what down syndrome is. Well, I think this is a wonderful way to do so. It is simple yet beautiful. Talks about the differences yet highlights the perfections. I also feel adults have preconceived ideas but children are more accepting. As kids mature, new experiences might invite further discussions. Maybe they would notice some unique features that would need a more in detail discussion about how each of us is made differently. I feel this book is a good place to start.

Here is a sneak peak into the book and a link where you can buy it.

Wonderfully Made Wonderfully ME! Seek & Find Storybook (My Little Sunshine Face) (Volume 4) https://www.amazon.com/dp/1537726846/ref=cm_sw_r_cp_apa_u16gAbNQ9D36N

I want to take this moment to thank God for making my baby Laksh perfect as can be and thank writers like Brandi Berkhimer for making this beautiful book.

21 things I am grateful for this Thanksgiving

In this busy life, it is easy to forget what things we have going for us and keep focusing on things that are not. For instance, focusing on not getting the promotion you were gunning for and forgetting to be grateful for having a job. Getting upset over not being able to get that branded bag but forgetting to be grateful for the other bags you already have. Crying over baby having diagnosed with down syndrome at birth instead of being grateful for this tiny miracle you created.(see what I did there 👶❤)

I know this blog is not completely from Laksh's point of view or even fully about him like it usually is, but I needed to put this in writing for him to see when he grows up. It being thanksgiving weekend, I decided to come up with reasons 21 that I am thankful/grateful for this life that God gave us. (21 has become my most favorite number recently, oh & also, it is my birth date)

1. We have Laksh and he has us
2. We have a roof over our heads
3. We have food in our bellies
4. We have love in our house
5. We have people that care about us
6. Laksh has both sets of grand parents
7. Laksh has two older sisters (cousins but closer than the real deal), aunts and uncles
8. Laksh has a fur brother
9. We are healthy
10. We have an amazing online DS community, our extended family
11. We have jobs so we can provide for our baby
12. We have access to great medical care
13. We became parents
14. We saw his first smile
15. We heard his first cry
16. We celebrated his first Rakhsha Bandhan
17. We celebrated his first Diwali
18. We celebrated his first Bhai Dhuj
19. We celebrated his first Halloween 
20. We celebrated his first thanksgving
21. And last but not least, we will have the rest of our lives to see his many firsts and seconds and more.

Never forget to be kind to others as kindness is all that matters. Happy Thanksgiving from our family to yours.

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!

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.

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!

Like mother like son

Its been a few days since I wrote. I feel like I am either running to doctor appointments, changing diapers, feeding, fighting sleep or crying coz I am away from Laksh at work. I have been trying to read this book (Bloom by Kelle Hampton; http://kellehampton.com/) for a while now and somehow managed to read only a few pages in the subway on my way to or from work. I feel like I should put a warning here though: "May lead to embarrassing and excessive crying so read in public at your own risk"

Thanks to a rather insensitive employer, I have suddenly come across some free time which I have now started using by spending some more quality time with my baby. Recently, we got some books for Laksh, some new and some hand me downs but great books nonetheless. My sister told me something she read in a book that stayed with me. Once we finish reading a book, we should just pass it along. Holding on to it holds negative energy. Spreading knowledge is good and keep only the books you are going to re read. Anyone who knows me know how much I love reading and how I am slowly and steadily building my personal library (don't know how I am going to follow the pass it along philosophy). Hoping that Laksh has taken after me in that sense, I have ventured on to this new path.

Some one on a FB page for moms told me about Jacks Basket and thanks to them, Laksh received this beautiful book about learning about colors. Just a side note, if you haven't already, check out Jack's basket. "Jack’s Basket is a 501(c)3 non profit organization that’s mission is to celebrate babies born with Down syndrome.  We strive to ensure that every new and expectant parent is provided resources and avenues of support within the community.  We aim to educate medical providers on how to discuss the diagnosis in an unbiased way in hopes that the birth of a child with Down syndrome is celebrated like any other." http://www.jacksbasket.org/

Anyway, so when I showed Laksh that book of colors, he was spell bound. He kept staring at the pages without blinking his eyes and just moving his eye balls side to side. How I wish I had taken a video but I was busy enjoying the moment. Cherishing how my little one might share this love of reading with his mumma. I say "might" because a small part of me does acknowledge it could just be the bright colors that had that effect on him. Testing my theory, I have now started reading to him in the afternoons if we are done with feeding, burping, diaper change, play time, tummy time etc and he is still alert. So this is day one of testing my theory.

we can always take a break from reading for a nice picture

I am so eager to learn things he may have picked up from me and things he may have taken from his daddy. I still get so amazed and ever so intrigued with the things a human body is capable of doing. So what if it gave my Laksh an extra chromosome, it did so only to make him extra special.