God is good but are we?

Today, I came across this story of a beautiful baby girl called Norah Mae. She is this awesome and fierce girl who was born with Trisomy 13. Though she lived here for 5 days, her life continues to give strength to others. When I read her story that her mom writes at http://www.hellonorah.com/, I came to realize the strength these amazing mothers have. I also talked about this beautiful and strong baby Colton, who unfortunately passed away and is now in the arms of angels. His life has also been a source of encouragement and joy to so many others. You can read about him at https://www.facebook.com/ColtonStrongHeartWarrior/. These mothers and their extremely special babies have made me happy and yet made my cry so hard. I would sincerely like to thank you for the courage you showed and for sharing your stories with us. Thank you for letting us into your lives and giving us a chance to get to know your precious babies.


Since before I became a mother, I have always been very sensitive about what others say and very protective about myself and my loved ones. After Laksh came in our lives, these instincts are on a all time high. My heart aches so much for other mothers and their babies and it feels so much joy for them as well. Laksh has already taught us so much that most people take for granted, even most parents. Laksh showed us this whole new world filled with babies with different abilities and yet each one of them, simply perfect.

When Laksh was diagnosed after birth and had to spend over 60 days in the NICU, I remember struggling with it and being angry with the universe and God for doing this to my sweet baby. Everytime Laksh had to get his IV changed, or pricked and prodded;  he would cry for the longest time and my heart would break and my anger would grow. I hate to admit but I was angry at God. I thought that he was punishing my baby because of some fault of mine. At that time, I failed to realize that God is good and God is our creator. So if we hurt, he hurts. He would never hurt us and always trust Him, as only He knows what His plans are. Since then, I have come to believe very strongly in God's plan and believe He has a greater purpose for Laksh and us. I think, through Laksh, He is teaching us to be better people and through this blog, I am trying to share more about Laksh with the world.

Laksh has taught me how to see each person as an individual and to respect their choices. How we should try to understand their journey. How to be sensitive to others and what they are going through. Being grateful for what God thought you were able to handle and blessed you with. So let our babies teach us some very valuable lessons. Next time, when you see someone in need, be the one to help them. When you see someone grieving, try to be the one to comfort them, and if you can't at least do not add to it. When you see someone being treated unfairly, raise your voice for them. Even though, I know and believe that God is good, sometimes, I still wonder, then why do little babies have to die? Why do little babies have to suffer? Why do people have to go hungry when there is so much food in the world? Why are differences not celebrated but mocked and bullied? I hope someday, we get to see the world where kindness is not an unexpected gesture would simply the way to live.

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 .

Welcome to Holland

Recently we posted on Facebook and messaged most of our family and friends about Laksh’s diagnosis. We wanted to post it before the end of Down syndrome awareness month so chose the 31^st October. As expected, most of the people we know were surprised (not as much as we were) with our post but despite that supported us a lot. The common theme being, “you are brave” and ‘he is lucky”. I understand that it is very nice of people to say that but honestly, I wonder why we are called brave for loving our child. Isn’t that something we are supposed to do? Just because he was born with a little something extra, does that mean we are now brave just for loving him? Also, he is three months old and has already taught my Husband and I so many things. He has taught us how to be open, how to be honest, how to focus on the small victories, how to be kind, how to appreciate the differences, how to truly love someone unconditionally. He has taught us all this and he is 3 months old.

Again, I understand that it would be difficult to know what to say and these are among the better things that people have said. One person commented that he does not look like he has DS. I felt like telling them, why would we make this up? But instead, thanks to Laksh, I learned to be nice and only showed gratitude.

A friend messaged me something that I really liked (though part of his text did mention brave and lucky). He said, “Laksh is lucky to have parents like both of you. Ds or not, every child has challenges which Laksh will also have and overcome them with your help and guidance. He will make both of you proud. Being a parent I can understand how difficult it would be to talk about these things. You are brave to face your issues head on; maybe I would not have handled things so gracefully. Good luck to you and lots of love to Laksh.”

Another friend texted, “Hey, just happened to read your post on Down syndrome and the fact that Laksh was diagnosed with it. While I know very little about it and honestly don't know what to say but it was very heartening to read your post. Glad that you are spreading awareness about it and most importantly like you said, "Let’s celebrate life and all forms it comes in!"

I love how open people are to learn and how it is different from what it was some years ago. I realize that when we were pregnant, we had envisioned a very normal and kinda boring journey as parents, but thanks to Laksh we came to understand how amazingly fun this journey can be . Welcome to Holland. (http://www.our-kids.org/Archives/Holland.html)

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.

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.