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. 

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!

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.

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)

Are we doing things that bring us joy?

I was just reading Kelle Hampton's blog about Krista who is her intern who happens to have down syndrome. (http://kellehampton.com/blog) The things that Krista is learning in college make me feel both good and a little sad. I had dreams about my Laksh being able to achieve get success and sometimes realizing that he might have to learn skills to be able to live independently that usually comes naturally to most people is a little disheartening. That being said, some years ago, people with DS were institutionalized so this is definitely a move in the right direction.

Anyway, reading her blog, I stumbled upon the entry from today and realized "worrying about things beyond our control" is not something that only I am inflicted with. But her friend did ask a very important question, " Are we doing things that bring us joy?' When I tried answering this question, I realized my answer is no for the most part. We are in that phase of life, where Hubby and I are struggling between trying to make a decent living so we can provide for our baby. In this day to day struggle, we are forgetting to take a minute to enjoy the small things (yes yes I am a fan).

Most of the times, we are just running through the motions and not actually living life. I sometimes see how my friends are managing to travel (a passion of mine) but I am not even able to go to the movies. I want to do so much and yet somehow I end up doing nothing. All I am doing is, going to work and managing to be able to find time to spend with my son. I hate that I don't have the freedom to be able to take time off work or just take a little sabbatical.

I am now deciding that we will do one fun thing every day. It does not matter how grand or how simple that thing is, but we will do it. It does not matter if anyone wants to join us or not but we will do it. As a family, we will do things that bring us joy because that is what life is made up of. Small moments of joy. Good night readers.





















                                                    🎃 Happy Halloween 🎃

Is it down syndrome or he is just being a baby?

Laksh is almost 3 months old. As I have mentioned before, we are waiting for his EIP to start and in the meanwhile we have follow ups with his GI surgeon, cardiology, ENT and regular pediatrician to keep us busy. This being my first baby, I find myself tempted to google what a three month old baby can do and then compare it and see what our baby is doing but then I stop myself. I know that is a rabbit hole, and if I fall into it, I am only going to fall deeper and deeper. 

Sometimes when I look at Laksh I wonder, is he looking too dazed or is he just being a baby? Is it his down syndrome that is making him not interested in smiling often or is he just being a baby? Every time he doesn't eat his entire meal, I worry if it is something to do with his abdominal surgery or he is just being a baby? Every time he doesn't respond to my voice I wonder, is it his down syndrome or is he just being a baby?

    

Every time he is awake, I wonder should I keep talking to him so he can learn more or is it okay to be content in just hanging out with him once in a while? Every time he is on the boppy I feel should I give him something to play with so he is working on his fine motor skills or is it okay be content in just hanging out with him once in a while? Whenever I lay him down to change his diaper, do I need to keep his brain stimulated by playing Mozart lullabies or is it okay be content in just hanging out with him once in a while?

I accept that there have been days where I forget he has down syndrome or that it is just a small part of who is that it does not even matter but then there are days where it seems so prominent in everything he does. When people talk about how tall he would be because his parents are tall, I wonder would that still be true as down syndrome tends to affect overall growth? When people say how smart he would be as his parents are highly educated, I wonder would that still be true as down syndrome tends to affect overall cognition? With so many thoughts running in my mind that unfortunately I forget to get amazed by this tiny miracle that God helped us create. Now a days, whenever my mind starts to wander, I remind myself to not put any limitations on him and believe in him. He can achieve whatever he sets his mind to because he is amazing and no such thing as an extra chromosome can stop him. If anything this extra chromosome is what is going to help him be him.