Reminiscing...

Dear readers,

When we first found out I was pregnant, it was the start of this year. Now, with the year about to end, I realized how different our lives have become in a few short months. Earlier this year, I had imagined all these changes that would come with our baby being born. How being a mom would be the coolest thing ever. How all my baby would ever need is my husband and me (apart from milk, sleep, and diaper changes of course). How we would be sleep deprived because that is what I have seen parents of new born babies be on TV. But God had different plans.

Being overweight, all our lives, we are told things we won't be able to do. We won't be able to participate in sports, we won't look pretty, we won't be able to wear certain type of clothes, we won't be able to have a baby easily, etc etc. So even before we decided to get pregnant, I started losing weight so the doctors won't give me the same old lecture about how I won't have a smooth pregnancy because I am overweight.I even went to the OBGYN before for a pre-conception check up to make sure everything is okay. That is how scared I was of screwing up or being told I will screw up instead.

When we got pregnant, I was surprised to learn most doctors wont even see me till I am 10 weeks pregnant or more? I was so mad, because the first trimester is when you need the most reassurance as you still don't look pregnant or feel your baby. Morning sickness isn't a sign that everything is okay. So when we finally got to see a doctor, they did not even do an US yet because for that we needed another appointment so it was a while before we got to see our little baby on the screen. It is the best feeling ever. No words can describe how wonderful it is to see his tiny heart beating on the screen and knowing some day soon you will be able to hold him in your arms.

Anyway, first two trimesters of my pregnancy went smoothly. My blood pressure was fine and so was my blood glucose (the two things most doctors had warned me about). Actually, by the end of the second trimester, doctors had started scaring me all over again about how he isn't growing well and how I need to keep counting his kicks to make sure he is doing okay. Anyway, moving past all that, the day my baby was born and I heard his cry, oh my what a feeling. In that moment, I knew my life would forever belong to someone else.

Little did I know, we had a whole different journey in front of us. He needed surgeries and NICU stay before he needed his crib and all the wonderful things we got him. So now we have come to terms with the fact that he would sometimes need doctors and therapists more than he needs us. We need to understand, he would need to see the doctors more often than our friends kids might have to. Sometimes, he would need me to be his advocate along with being his mother. Sometimes, I would have to fight to get him what other kids get freely and easily. But that doesn't matter. What matters is he completes me and I would do anything for my baby boy.

Hope this year was everything you guys hoped for and the coming year even better.

Hirschsprung disease : A parent's perspective

The point of today's blog entry is to help create more awareness about Hirschsprung disease. Before my son was born, I had no idea that such a thing even existed. I had heard of down syndrome of course (being a PT, it is part of the training) but Hirschsprung disease was something totally new. For those out there just like me, let me give you a quick intro to it. 

Hirschsprung disease is a congenital condition that affects the large intestine also known as colon which causes problems with passing stool. This condition is a result of missing nerve cells in the muscles of the baby's colon which can be confirmed by performing a rectal biopsy. In other words, its a condition where baby is born without the nerve endings in his/her colon that ensure everything keeps moving along as it is suppose to. As these nerve endings are missing in part of the colon, it prevents stools from passing. It is a life threatening condition if not treated. It is usually picked up in the first few days after birth but sometimes can take a little longer. Treatment usually means surgical intervention and removal of the affected portion of the colon 

Hirschsprung disease occurs in approximately one in 5,000 newborns. Doctors aren't entirely sure why some children get Hirschsprung disease, but they do know it can run in families and affects boys more often than girls. In fact, Hirschsprung disease is about five times more common in males than females. Children with Down syndrome and genetic heart conditions also have an increased risk of Hirschsprung disease. For example, about one in 100 children with Down syndrome also has Hirschsprung disease.  (Statistics taken from https://www.niddk.nih.gov/health-information/digestive-diseases/hirschsprung-disease)


Laksh had emesis 24 hours after birth which was greenish in color. That vomit created a panic of sorts and the pediatrician on duty admitted him into the NICU right away. The hospital where he was born did not have a higher level NICU and he was transferred into a bigger hospital within a few hours where they suspected a few things, one of which was Hirschsprung disease. To diagnose it, a rectal biopsy is performed which was done in a few days after we were admitted in the NICU but the results took a while to come back. When the results came back, he was scheduled for a surgery within the next few days.



For Laksh, we had to undergo a Pull-through Procedure, thankfully without the need of a colostomy pouch. His surgeon did a wonderful job and I would like to specially mention him here, Dr. Jason Fisher. He worked very hard and the surgery that would have taken 3 to 4 hours took over 7 hours ( more colon than what they originally thought was affected) but Dr. Fisher and his team were amazing and so was my son. He is a rock star. This surgery happened when Laksh was exactly 3 weeks old.

So now that I have given you some back ground, here are the 5 things I have learned about Hirschsprung's disease from my son:

1. Seeing your baby's dirty diaper for the first time can become a moment to cherish and celebrate.
2. Every diaper change that does not have poop in it can be nerve wrecking and a cause of concern
3. Measuring you baby's belly becomes a routine of sorts and having pictures of his dirty diaper in your phone fairly normal.
4. Rectal dilatation; no matter how painful for a parent to perform, helps our babies tremendously. 
5. And lastly, you won't care if your baby has down syndrome or hirschsprung, all you would remember is how incomplete your life is without him and how you will do anything to see him smile

Here are a few photos of my darling Laksh and the smile I can do anything for.

 

Always remember to appreciate the differences, as the differences are what make us unique. Happy Holidays! 

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. 

Milestone Monday

Dear readers,

It is time for our very first #milestonemonday. I am feeling like such a proud mamma while writing this, my baby is now holding his own bottle (for the most part with occasional help) while drinking milk. 
Here is a picture from this morning while drinking milk in his grandma's lap. ❤

Another milestone that Laksh has mastered is the art of smiling and making the people around him weak in their knees. Here are some pictures to show that;

Another interesting thing he seems to have started doing is, looking like this emoticon : 🙏

Or rocking "dabbing" in his sleep

         

Example of dabbing for those who are unaware of what it is

He has also started removing his feet from the sides of his crib

And, last but not the least, he is able to hold his head up for a good 15 seconds or more

These are a few of his achievements from the last couple of weeks. We will keep you updated about him and have made this GIF as a thank you from Laksh and all of us. Keep supporting us the way you guys have. It is appreciated and needed. Always be kind dear readers. 

PS: A very happy 37th wedding anniversary to Laksh's Nana and Nani (grandparents)

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!

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.