one day left to live series - 35 months and 10 days

We had been to New Jersey for an intensive Medek therapy session with Mr. Novogroder.
Details about the therapy are provided on the Idea Blog
http://littleidealog.blogspot.com/2012/09/says-cuevas-medek-exercise.html

We also visited Balaji Temple in Bridgewater and Ranganathar temple in Pomona, had good darshan as i've never visited Srirangam this was my first darshan of sri Ranganathar.

And one of the days we visited Green Wood garden near New J. It was a beautiful place. True to the name it was more of the woods ambiance rather than some man-made arboretum type.

one day left to live series - 34 months and 3 days

Summer in Dallas, I don't suppose needs more adjectives to describe it.
So We've been having fun indoors visiting museums, having get together with friends, visiting a couple of local attractions and Sripathi's school had invited a clown to their class and that was fun.

Art is a favorite the household, so we visited the Dallas Museum of Art a couple of times this summer. We were lucky to have free trips to most of the exhibitions. Thanks to the school district and our bank! Although it's worth every penny we spend, do check out the museum website, you can find occasional deals.

Then the following week we had Gokulastami celebrations at home. It was really nice to have Kavitha and her family join us. Here is Sripathi and Tanvi all dressed up for the day/

And a week later, the school had organized for a clown to visit the preschool classroom and it was so much fun. Best part being the clown interacting with the children, having them do part of the tricks and appreciating their tiny efforts.

That same weekend we drove down the street where we live to get a closer look at the Mustangs of Las Colinas. It was awesome to learn how a visionary and a sculptor could bring about that a massive and marvelous idea to reality. It is a must see if you live anywhere in Irving.

Other than these visits I personally had so much fun watching Sripathi and his friends.

And finally last weekend Kavitha's family and mine went to the Ripley's believe it or not., I guess the best part of the visit was the mock earthquake they had created. They rest seemed tawdry. And Sripathi didn't seem to like it as he dozed off when we entered the building.

Hope to see more of Dallas!!!

one day left to live series - 32 months and 28 days

It's summer decorating at home this year. We finally got Sripathi his own bed. It’s a cute one with a bookcase headboard. So his room is officially decorated.

He has been sleeping in his own bed for the past 2 days. But sadly he had a seizure this morning. Actually it’s been a bad day he has had 3 seizures already the last one was so bad that I had to use diastat to control his seizure. He is so exhausted and sleeping in the living room now.
Well I guess today was a big one for the month of July. Oh and yeah he missed school today that means missed being with his friends :( But I'm glad he is resting, that is all he needs for now.

one day left to live series - 32 months and 12 days

Sripathi always showed signs that he enjoyed the company of other children, though he cannot always use his vision appropriately to see them or use his arms and legs to play with them he simply feels delightful hearing their voices and feeling their touch.
Here are some pictures from his school and home with his friends.

With Tanvi.

one day left to live series - 31 months and 22 days

So we are trying again to get Sripathi to evolve the feeding bottle. It's been over a year since our first attempt. We hope he is ready now. So here is how things are moving for the last 2 days

1. Adapted nipple to a straw and bowl

2. Sripathi: I just want my Bottle

3. Mommy: Sorry Sweetie you got to try.

 4. Finally the bowl is empty...

5. and Sripathi is dirty.

Mission Accomplished!!!

one day left to live series - 31 months and 5 days

Okay this has been a good two months. We did a lot of activities and also pulled through some many sick days.
Yes Sripathi was again diagnosed with aspiration pneumonia and was on several nebulizer medicines and antibiotics. And some days with cold here and there. He is doing well otherwise. Enjoys going to pre-school, water therapy. Oh yes the horse therapy has been suspended for some time due to summer and will restart in fall.

We visited the Japanese garden a week back, it was beautiful. In the meantime I've been taking some sewing classes and they are going great. And also tried my hands at vegetable gardening and its not too bad.

one day left to live series - 29 months and 21 days

So Sripathi started going to pre school at Ability connections from April.

Also in April we went to the Dallas Arboretum. Though the Tulip season was coming to a close it was yet very beautiful.

Here is a great alert picture of Sripathi during Aqua therapy

one day left to live series - 28 months and 14 days

Sripathi is doing better these days. His big time trigger was a microfiber duster. This was the first thing that he ever touched and was consistently touching. This trigger has worked miracles, now he willing to touch cotton balls, beads and a mesh dropped in a tub of water. He is also doing better at Aqua therapy sessions. This week we are taking him for hippo therapy at Corinth. I'm not hoping fir anything, i just want to offer what ever is possible. We had been to the art museum last week, it was a good free trip got to see some thing self for a change. I enjoyed looking at different vases.

one day left to live series - 27 months and 11 days

The pulmonologist and the gastroenterologist both feel we have to continue vital stim and repeat the swallo study in 2 months. And if necessary we can get a CT scan of Sripathi's lungs. In the mean time we had been to the Natural history and sience museum. It was again a drab. They charged a lot of money but there was very little to see, not efficiently lit and several exhibits we're missing the description tags. And to make our visit a whole lot sadder, Sripathi had a seizure in the museum. and we when came back home he had a fever of 103.2 rectally. Dr.Bhatt has prescribed a steroid over the nebulizer and also the Amox antibiotic. He is still recovering.
I spent time reading the guide book and the sample assessments provided in the sensory learning kit. This is an amazing gift to me from Ms.Cynthia. I hope I get to complete the assessment with Sripathi, it will greatly help me in unrest adding his choices and also I'll be able to share this with his teachers and other care givers. Also I'm trying to work with Sripathi on the switches and the iPad apps. With some motivation mostly with food I guess I'll be able get something from Sripathi.

one day left to live series - 26 months and 20 days

Last week Ms.Cynthia brought Sripathi a lot of good stuff. So he now has his lightbox, spinner, swirly mats. And to top it all he got his switches and pegs and the whole sensory kit. Hope all the stuff is useful for Sripathi, that i can efficiently use it to his advantage. God this is so tough because he hardly acknowledges any of the effort we put in to help him better his faculties.

We had been to the Texas Butterfly Garden and the Children's Aquarium at Fairbanks. The Butterfly Garden was really pretty, worth the time. I also collected some really pretty magnetic "stained glass" type of butterfly to show to Sripathi. On the other hand the Children's Aquarium was a drab. It was dark and dingy in the Aquarium. Sripathi could not see anything much other than one turtle whose Aquarium was surprisingly clear and well light. But I heard from my PT that there is another world Aquarium which is amazing. Hope we can make it there some weekend.

Okay now to add to the list of blows we've received. Today we went to Medical City, Dallas for Sripathi's swallow study. The Threapist tried several consistencies and nipple flows of Barium. Thin, thick, nectar consistency, Honey consistency, fast flow nipple, medium flow nipple. God Sripathi failed in everything. He kept aspirating in some way or the other. The Therapist had a look that told me for certain that she felt my son will join the ever growing list of tube fed kids. But she was kind enough to call and talk to our pediatrician who suggested that we don't decide anything right now and just go into his office tomorrow and then come up with a plan.

Until then or until a decision is made, I have to go back to feeding Sripathi with nectar consistency milk or juice in a medium flow nipple. Also I'll have to go back to feeding him pureed food. Well I'm speechless, to know that I've been feeding my son the wrong way for over 2 years! But there is light, there is definitely some light at the end of this tunnel. The therapist suggested that we progress to using Vital Stim that is NMES (Neuro muscular electrical stimulation) on his throat alt east 30 minutes 3 times a week. So I spoke to Sripathi's Speech Therapist who has graciously agreed to come 3 times a week to help him. Well I better consider it a blessing.

one day left to live series - 26 months and 9 days

Sripathi has been doing well thru December. He had just one seizure in December which also could have been avoided had we not stayed for a long time at Priya and Mahesh's house for the satsang.

The coordinator Karin Duffy from DBS provided us with a sensory room, resonance board and all the toys for Sripathi. Apart from these she had sent us some really nice classical music CD's for relaxation, concentration, thinking etc.
Sripathi enjoys classical music.

Recently i showed Sharon our PT, old videos of Sripathi rolling so well when he was 6 months. Then there were videos of him saying words like 'athai'. After watching a bunch of videos Sharon suggested that we visit a Developmental Pediatrician.

Ms.Cynthia the VT from IISD provided the Lightbox yesterday. Hope i get to efficiently use it.

I'm working on more books for Sripathi. After writing Love bound and Love Mount i just completed Love Ground. Also the Hadley courses are going well I've been scoring A+ for all my assignments.

My father gave a surprise visit yesterday. This is probably because of the drama i cause a week back when we were in Houston. Well I'm sick of taking about it, rather I'm tired.