And then I was 4 months old

Dear readers,

Today my darling baby turned 4 months old. In fact I started writing this blog exactly at his time of birth but by the time I would post it, it would be late evening. I plan to have his photo shoot once I go home from work and want to add that to this blog so that will cause a little bit of delay. Anyway, now that this is out of the way, let me start telling you all about how his week went and how proud I am to be his mom. Also, on the occasion of his birth day of sorts, I want to announce that we are doing a little something special and would have guest bloggers writing here over the next couple of weeks.

So Laksh is 4 months old and these 4 months have been the best and the scariest 4 months of my life. The intense love that I feel for my baby coupled with this protective instinct that I have for him is empowering and weakening at the same time. I remember reading, "Making the decision to have a child -- it's momentous. It is to decide forever to have your heart go walking around outside your body." -- Elizabeth Stone and wondering how can that be true. But I have been feeling like that for the last 4 months and it has been exhilarating.

Laksh has been successfully rolling from side to side, but is still to complete a roll. I am not worried as I know he is doing the best that he can and is doing amazingly well. Based now this I came up with an idea, I am going to start something that I would like to call "Milestone Monday" for him. One Monday in a month, I would update about what new milestones Laksh has achieved and would love to know where other parents are. 

For now, let me show you guys some highlights of his week:

Waiting for Mommy and Daddy to get home

When mommy says I'm cool, I am cool..

The day I decided to dress up as a teddy bear 

During PT session, redefining "killer smile"

Chilling in daddy's arms

Charming my aunts with flair..

And then I was 4 months old

Hope the last month of this year fills your lives with love and happiness. Happy December!

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.

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!

Our journey so far

I have been thinking about this for a while, 11 weeks exactly but no better time to start than during Down Syndrome awareness month. My son Laksh was born August 1st 2017 at 36 weeks gestation. All through pregnancy, some high risk doctors (one doctor in particular) kept scaring us into thinking my placenta isn't working , our baby boy isn't growing well (IUGR), I am starving my baby and that his heart might stop beating so I need to keep doing kick counts. (which would also just tell me he is fine at that moment). Turns out, my baby was growing perfectly well, but just not according to the growth charts they kept insisting he follow.

Thinking back to the day before he was born, we had just gone for my regular 36 week follow up appointment and was admitted due to low amniotic fluid and he was delivered via C-section the next morning. Damn that was quick. Once I heard his cry, I took a sigh of relief thinking now all our anxieties are over. The first thing the pediatrician told me was, " You know your baby has down syndrome, right?" Remember we had no markers during pregnancy and I remember telling her, you are talking about someone else's baby (even though we were the only one the in OR of course). Being a physical therapist, I have some knowledge about down syndrome and did not want that to be my son's reality. At least not at that time. I wanted to see my baby first. Not hear all this scary information. When my son was brought in the room, the pediatrician (I believe who was pregnant herself) came in and started demonstrating why she thinks he has down syndrome. She said, as you can see his eyes are almond shapes, his ears are oddly shaped, he has this single crease in his palm, and this gap in between his toe etc etc and all I kept thinking is, he looks perfect to me.


The next 24 hours were the best (even though I was in severe pain), I had my baby with me, could hold him without any wires or IV's, breast feed him without any concern of emesis, and just enjoy our special bond. I was in heaven until 8.30 in the morning when he threw up some green stuff (bile) and was instantly admitted to the NICU and later transferred to a more equipped NICU. That marked the start of our 2 month long stay in the NICU. I still remember when he was being wheeled into that scary looking transportation unit, I felt my heart would never heal. I was discharged the next day (one day early) and I went to the NICU where my son was right from the hospital. Took me 30 mins to walk 1000 feet but when I saw my baby, all pain was forgotten. 

Day 1 in the NICU

I remember the day we received confirmation of his diagnosis , I cried like I have never cried before. Mourning the loss of the child I thought I was having while never realizing that the child I do have is beyond perfect. He was also diagnosed with Hirschsrpung disease and needed surgery to remove part of his colon which wasn't working. The surgery was suppose to be 4 hours but ended up being 7 hours. The longest 7 hours of my life. Due to this he needed to be kept on the ventilator for another 12 hours. The sight of him laying there completely motionless is something I wouldn't wish on my worst enemy to have to endure. His surgeon did a fabulous job but 3 weeks post-op he developed adhesions and needed to be operated on again. He also got an IV burn on his left ankle which took almost 6 weeks to heal. 

IV burn on day 1, it got a whole lot worse before it healed

There were some good days, some very good days and some not so good days. Part of being in the NICU. I remember someone told me it would feel like a roller coaster ride. I did not understand or care about the analogy at first but towards the end, I understood what it meant. Here are some pictures of the good and very good days. 

Quality time with daddy, IV burn dressing on his ankle

The day we were told there might be a discharge in the near future

 Finally the day came when we were discharged after some training on feeding with a therapist. We are still on antibiotics, multivitamins, rectal dilatation twice a day but we are HOME. Recently got a wound infection on the site of incision, added another antibiotics to his schedule. My baby is so strong even when he is so tiny. It makes me realize that I need to be strong for him as well and need to share his story with the world. Hence, this blog. Hopefully I would be able to help a few others in the process like some amazing bloggers who have helped me.


Special mention:

https://rubysrainbow.org/blog/
http://kellehampton.com/blog
http://noahsdad.com/
https://themighty.com/
among many others.

All set to go home, 2 months and 2 days after birth. My precious baby.  A little something I feel fits the way I feel for you.

 “I didn’t fall in love with you. I walked into love with you, with my eyes wide open, choosing to take every step along the way. I do believe in fate and destiny, but I also believe we are only fated to do things we’d choose anyway. And I’d choose you, in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.”  

                                                                                        — Kiersten White, The Chaos of Stars.

Also, a big thank you to the NICU team at Bellevue hospital.