Friday, December 31, 2010

Tuesday, December 28, 2010

We are back :)

Hope everybody had great Christmas. We were at our hometown for my sis-in-laws wedding.
It was great fun.Navya too had great time with all her cousins.
Few pics of hers from the wedding..

At the Reception with Aunt Teena and Uncle Sameer :)

 Navya surely knows how to pose. Notice the different poses

With Aaba(grandpa)

 Our new Dholki :)
 With cousins

Wednesday, November 24, 2010

Oh, I felt like a celebrity's mom :)

Last Friday Navya's school had a Fancy Dress Day; for Navya's batch the theme was 'Farm Animals/ Underwater Animals'. Interesting part was the moms were suppose to design the outfit, no ready made costumes were allowed. So quickly I thought Navya can dress up like a Rabbit.. The costume would be easy to make and Navya would be comfortable in it. So we came up with this one. 
Navya loved it :).

We did a small photo session at home before leaving for the school.

Notice the tail. It was a detachable tail :) ha ha.
Now, the most amazing part - we reach school, I put her ears in the hairband and get her ready to enter.
School had arranged chairs in the indoor play area for the parents.The moment we enter (I am holding Navya's hand and Navya walking slowly), I hear such comments
"Oh Look at Navya, so cute"
"Achha ye hai Navya??" (Ok, that's Navya?)
"Navya, cutie pie"
"Oh Bunny she is so cute" :)

Then we move to the classroom, Navya's friends were excited to see her, they wanted to click pics with her.
One boy came close and gently touched her cheeks.
Navya was happy to model for the photographer mommies and to show the 'hop like a rabbit move'

Then it was the time to move to the open area, one by one, to show off your costumes. One by one the kids go there, some feeling shy, some were not ready to put on their costumes, some were happily showing off teir cool costumes. Now it was Navya's turn, she refused to go with her teacher so I accompanied. The teacher announced that Navya is a bunny and asked her to please smile. There you go, this little model smiled and so all the cameras flashed.
Oh I felt like a celebrity's mom :) Loved every bit of it.

Later when Navya's Nanny picked her from school, she told me Navya was very happy today. I am sure Navya too enjoyed this event.

Tuesday, November 23, 2010

Friday, October 29, 2010

Monday, October 18, 2010

Friday, October 8, 2010

"This child will have this problem"

Do you hear this from your Pediatrician?
I hear this many times

Navya is having cold from past 2 weeks, no fever but just the runny nose.
Finally we saw the doc yesterday, he prescribed the usual medicines for flu (actually on all his previous prescriptions we have the same medicines scribbled, as we see him for vaccines and cold/cough)
After all was done
Me: "Doc, Navya is catching cold very frequently. Rainy season has been the worst."...
He interrupted me
Doc: "This child WILL have this problem"

Me: "Anything you can prescribe to improve her immunity?"
He was nodding his head to say NO, then he gave up to me and prescribed an Ayurvedic Syrup
Doc: "Give this syrup for 3 months. It usually works with other kids"
(oh that means, it may/may not work with my child as he has DS ???)

Some other day,
Me: "Doc she has gained just over 1 kg in past one year. I am bit worried"
Doc: "This happens with kids with DS"
Me: "And Doc  her height? Is there anything we can supplement to help her grow?"
Doc: Nothing. This is also because of DS
(Look I know, she would be short, DS + Mommy is short, but does that mean you would not suggest anything, would you not suggest anything to a typical kid?)

I don't like the fact that the Pediatricians are not open to think about more options.They want us to accept what it is.
Sure we  have accepted what it is. But it is my every right to find out what can benefit my child.
Just because she is born with a condition which can not be altered, I am not gonna sit and watch whatever comes to me.

The most disturbing thing is, had some other mom asked above queries I am sure he would had prescribed 'n' items for the same.

I feel frustrated.

Tuesday, October 5, 2010

Navya’s 2 year Assessment Update

Every 6 month we get Navya assessed by the Developmental Pediatrician. We see a specialist from Ummeed.

The list of checkups/tests we do every 6 months are
1. Blood Test - Thyroid (T3, T4, TSH)
Our kids tend to have Thyroid abnormalities, either Hyper or Hypo Thyroidism. One needs to get this Test done periodically , as the child grows the time interval can increase;may be yearly for older kids
2. Total Blood Count
This test helps to identify if there is excess/less of Haemoglobin. Excess of Hb is not good for our kids.This test also helps to see if there are any abnormalities in other blood cells, as Kids with DS have higher chances of  Leukemia compared to typical kids.
3. Eye Checkup – To make sure everything is all well in that area
4. X ray of entire Backbone – We have been asked to get it done this time. We have one done for the Neck area. It was good. This one is probably a routine checkup

Coming back to the Assessment, the doc assessed Navya with a set of activities. Some of the activities I remember were
Pretend Play – Doc. observed her playing with doll, the Roti/Belan
Shape Sorting – Without any hints, doc gave her shapes and she had to put it in matching slot, no prompts- She did it. My OT had hard time teaching her this, but on the assessment day she did it like she knew what was coming
Block Stacking - Navya was asked to make a tower of small blocks.- This was a bit tough for her tiny fists/fingers. But she did it again :)
Imitation – Doc showed how to fold a piece of paper, Navya was handed over one paper to do the same - Again she did it no promts again.
Object Recognition – The book had 2D black/white images of common object like, shirt/book/apple/dog/cat. Navya was asked to point to these objects - She could recognize all known objects
2 Step Instruction - Doc asked her to 'feed the baby and pass the Pen to mommy' - She did it again. I was surprised, I never gave her 2 steps instruction. Something we need to start doing
(Actually in this assessment Navya did everything that was presented to her :) )

Then doctor asked me questions about
Her Language Development- 6 months back Navya was not even babbling, our Speech Therapist gave us some oral exercises. We have been doing that. Looks like it has helped. Now, Navya can say 'MaMa', "BaBa',"Bebi". Occasionally she says  ' Bhu bhu' (dog), 'bhae' (bye), 'Gigi' (Didi/sissy), 'Goo' (good)

Her receptive language is awesome, I feel she understands almost all the things we talk to her. She can sign lot of things, nod her head to say YES/NO. She can communicate using her signs, pointing, with her various sounds associated with the objects.

She has her own preferences for things like which dress to wear/what to play/where to go/what to eat/what not to eat. A long list there.

Does she walk with support  - Yup, she can. In fact she has already taken few steps independently, she needs more confidence. Has started to stand on her own from sitting position. Looks like she is almost there, but seriously we are very much delayed in this area, Navya started to crawl some 9.5 months back.
Navya's progress in school - I had two Parent-Teacher meetings with her teacher. And I was SURPRISED.
Meeting 1- Teacher said "Actually Navya is doing much better than other kids. She listen patiently, follows all the instructions, participates in indoor/outdoor plays/craft activities, knows all the rhymes/actions.". "She has two friends, she chats with them and prefers to play with them"

Meeting 2 - "Navya is doing very good". Teacher handed over the craft she had done and said "You wont believe she has done everything on her own. We had to help other kids, but Navya did everything on her own" . "Navya enjoys Water Play and dance to the max. For the Dance class Navya does all the steps, doesn't get tired of standing, even if she falls she stands up again" . "But she is getting naughty, during snack time, she takes out all the stuff from other kid's bags" (it confuses teacher as they don't know what belongs to whom).. ha ha ha.. I think I quite liked it
And no surprises but Navya is very popular in her school. All the teacher/Helpers adore her. One friend of hers cries if Navya is absent from class. Infact for her b'day celebration in school, all the kids from all 4 classes had gathered (according to her class teacher it's very rare scene)

Potty Training - Looks like we are quite successful there, Navya can sign. We still use Diapers at night and when we are out. We had started with potty training when she was 6 months, started with the regular Potty, now we are using the Potty Seat which can be placed on the toilet directly and it is easy to carry while travelling.

Does she have her own gestures - A lot, she is a little Drama Queen. She can show you how she cries (all crocodile tears). She also copies dance moves from TV, would upload some videos soon

Does she understand and follow 2 step instruction - We did not work on that. Not sure
My concerns - These days Navya is not ready to eat double textured things. E.g. You have green peas in Rice, she will not take it. Plain dal rice is ok.

After the Assessment Doc was very impressed.
Assessment Result: Intellectually Navya is just like any other 2 year old.
Expressive Language is lagging, we have improved in that area from our previous visit, but we need to work more on it. Navya's Receptive Language /Understanding of language is excellent.
We have been asked to continue with the Physio Therapy /Occupational Therapy /Speech Therapy and get the above mentioned tests done.

The language delay was something we knew about, but there is 'no developmental delay' was something I wanted to hear from the very first assessment. We saw the Speech Therapist and she thinks that may be Navya is taking a bit more time to process words. So she has asked to STRETCH the words. And has given one exercise for that 'Double Texture Problem'

My practical mind was not ready to accept that there are no developmental delay. But then on our 18th month assessment same doc. had told me that Navya's developmental age is 15.5 months.
So, that means we have clearly moved forward with a faster pace.

I really wonder what has changed since then,
Play school - Yes Navya started her play school roughly 3.5 months back
Nutrivene D - Yup we started her on this program some 3 months back
Your Baby Can Read Program - Started some 4 months back, I feel this is a good stimulation for her and exposes her to new vocabulary
Or may be she is just growing with her age :)
God knows, but we are not going to stop whatever we are doing currently.

Health Insurance Policy

Do you have a Health Care Policy for your Kiddo with special needs???

We dont have one yet, as I can reimburse the medical bills from my employer upto 15,000 and rest my husband can reimburse.

Off late I had been thinking of taking one, came across this helpful article.

If you have a medical policy, could you please put a comment here about the details of the same