Nov

Time for an update, although this is going to be random I just want to keep track.
First of Sripathi was seizure free in August ans September. Then he started have a lot of cluster and we finally increased his dose to 300 mg of zonisamide.

We moved to lewisville so that Sripathi could attend Lillie Jackson early childhood center
This is a great school. Sripathi likes Mr. O'Neil the teaching assistant.

We had been to Pomona during the Columbus Day holiday and visited the Ranganathar temple. It was a great visit. We also me Ramuji in New York.

For his birthday we got him a toy, a board game based on the wheels on the bus. Nurse Jennifer sent him a greeting card and gift card. Jyothi and Vijay gave Sripathi a new dress. Jayanthi and Maya gave him a puppy dog toy called Cody. And we bought him several clothes at old navy.

This Halloween Sripathi was dressed in a homemade scotish kilt with sporran and bagpipe. He was so handsome.

Diwali was okay. We got firecrackers this year.

Highlight so far is we started watching this serial on Mahabaratham on sun tv directed by Suresh Krishna and it is so so so good.

For an utsavam during thanksgiving we have made a white elephant with paper mâché and it came out so good.

one day left to live series - 42 months and 25 days

We've visited the Kimbell Art Museum couple of times now. It's the best museum I ever visited in Dallas. The collection was refreshing, which includes Michelangelo, Picaso, Braque, Monet.
In the recent past they had an exhibition on Bernini's clay sculpture methods. More than all these high end art museums Sripthi seemed to like art by elementary school and middle school kids. I'll do a post about our visit to the Irving Art Center later.

Some of my favorites were
1. LORD GROSVENOR'S ARABIAN STALLION WITH A GROOM - George Stubbs


2. HORSE AND RIDER - China, probably Shaanxi province


3. EQUESTRIAN PORTRAIT OF THE DUKE OF BUCKINGHAM - Peter Paul Rubens


4. LA POINTE DE LA HÈVE AT LOW TIDE - Claude Monet


5. THE STONECUTTERS - Jean-Baptiste-Camille Corot


6. MAN WITH A PIPE - Pablo Picasso


7. GIRL WITH A CROSS - Georges Braque


Yes I like paintings with horses!

Sripathi turns three!

My son Sripathi turned three on 29th of October. These three years never went like a flash, they were not easy, they were not always happy but they were not always gloomy, they were not fast nor were they slow. They were perfect and purposeful. 

Here's a small video celebrating our love, our purpose and our life. 

I'm not being selfish by "Wishing us the best of everything this life is to offer to care for Sripathi" 

Happy Birthday Sripathi. Wishing you pure grace, perfect health, peace and purpose today, tomorrow and thereafter!

one day left to live series - 40 months and 21 days

Oh ages since I updated the blog.
Let me start with Sripathi's third birthday
I had then learned to bake seriously good cakes, so for his birthday we celebrated not once but almost 3 times. And baked 4 cakes in all. We celebrated it the hindu way, that is under the star that Sripathi was born. Then i baked a teddy bear cake to take to his school and a elmo face cake to celebrate with friends. Thanks to K, she made Sripathi's brithday party all the more special.

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.

one day left to live series - 24 months and 25 days

We have been traveling to Houston back and forth for the first couple weeks of November. We had the appointments with the Neurologist, the Spine Doctor, a long 4 hour MRI.
"All is Well"

So the 4 hour MRI on Sripathi's brain and Spine came back with no bad news. Of course his brain is still large and it was obvious that it was due to the enlarged white matter but in addition to that we learnt that the white matter is nearly double its size for this age. Also the doctor mentioned that he noticed polymicrogyria on Sripathi's frontal lobes they are the main reasons for this seizures ans delays. Sadly we can do nothing about it. They will just stay. Other than that we were surprised to know that there are 3 or 4 more children like Sripathi with all the similar diagnosis. Well since they are all around the same age we really don't know what is store for his future. Well I hope all these children have a smooth way all the way! Yeah there will be bumps we know that and we expect them but not bad enough to bog us down.

Well then came the Spine Doctor who said Sripathi's spine is just fine know and that he will check back on him in a year. Although there are several chances that Sripathi could develop scoliosis its still a long way ahead so we were not there is nothing to worry about as of now.

We came back and Sripathi was getting back to his therapy schedule and now my husband returns home on Monday and suggests that we go back to Houston on Thursday and stay there for Veteran's day. Well its not often that he gets a break and I don't want to be a spoil sport so we leave and plan to return on Sunday only that my husband fell ill and we returned only on Monday. And guess what the very next day me and Sripathi were down with cold and fever for the rest of the week.

Sripathi got a little serious this time with cluster of seizures controled by an increased dose of diastat and then wheezing. Well with Dr.B on our side we were able to get his back to normal in 10 days. He was given an antibiotic, a steroid and a medicine through the nebulizer.


BTW in between our trips, one day I took Sripathi for OT and half way through the session the therapist sort of asked me if I find any improvements with Sripathi since we started OT. And I was positive because he has shown a lot of improvement. A baby with a head circumference of 55 cm that is heavy are a rock is fighting all that to learn to hold is head up is THE most incredible thing in the world. Well that's what I think because the therapist was not happy with the progress. Basically she was not happy about Sripathi's visit with her. So as i was waiting for this conversation to end, she was almost direct in saying that we should probably look into a different home health service to provide OT for Sripathi. Well as the story goes that was the last time i saw her.

So we are not back to searching for another OT, I've asked ECI to provide us with an OT again. Hope this time they have a quicker turn around because the coordinator mentioned that they have new OT's joining their team.
Also she told me that they would give me an application for the Respite care. That we I could have a friend or caregiver for Sripathi for 20 Horus a month.
The best part is our friend is a professional OT from India since she is not licensed here in America she is not working as an OT here. Yet I could pay her with the respite time and money and have her provide OT for my son.
Keeping my fingers crossed!!!

Okay its Thanksgiving weekend and so I took the time to call my two most favorite people in Florida, Miss. Peg, Sripathi's first PT and Miss. Susan, Sripathi's first VT. Ah it was so nice to hear their voice and so nice to know they are doing just fine. Here's wishing to "Thank" everyone we've met in this thrilling journey during this Thanksgiving 2011.

Happy Thanksgiving!

one day left to live series - 23 months and 19 days

Sripathi is happy and completely unaware that its going to be 2 years since he set foot on earth. Oh though not literally he has not yet "SET his foot down" but that's okay.

BTW we bought Sripathi a Bantam stander. He as been working to stand up for almost 2 weeks now. He is okay for the first 20 minutes and but after that you better get him out of there.

Last weekend we had been to the willow bend mall because our PT suggested taken him to the play area at the mall. Well we didn't like it that much, for one it was very crowded and not a thing in there that is suitable for a special needs child. So I'm definitely not going back there to feel bloody left out. oh and those typical child suck!

BTW the most important thing that i got to update here is Ms.Marianna Bond's visit. She is an Assisted Technology Specialist. She is going to help us determine what AT will be suitable for Sripathi and also help fix his car seat.

one day left to live series - 22 months and 30 days

Last week was so enriching. We got to meet two people who are helping shape Sripathi's life.

1. Karin Duffy, the program coordinator at DARS Division of Blind Services. She is herself blind from birth due to a recessive gene. She came home to learn more about Sripathi's needs. She gave her two cents on what else i could try with Sripathi apart from what i learn from his TVI. Also she strongly recommended meeting with Dr.Roman.
And so we did go ahead and get an appointment with her in December and also a backup in April, just in case we are unable to travel. (I'm already shivering thinking about how cold it will be up there in Pittsburgh during winter.)

2. We got to meet the John Bramblitt. I was so excited after reading about him and watching his videos. We did learn a lot from his session at the Dallas museum of Arts. I have to thank the TVI Ms.Cynthia Carter for inviting us for the events.
John was so glad that we as parents are getting Sripathi involved in the world of painting at a young age. He was so happy that he gave us his card and told us to call him anytime we need further assistance. Here we are almost equipped to continue Art therapy for Sripathi.

3. We got to meet the two gorgeous guide dogs Aurora and Echo. Both of them help Karin and John.

Truly amazing experience! I cannot thank them enough.

one day left to live series - 22 months and 21 days

As the Dallas weather starts to cool down from 3 digit degrees to 2, we headed to the Dallas Arboretum on Garland Road last Saturday. It was such a pleasant day and such a peaceful sight to see all around. I wanted to put Sripathi on the lawn and have him feel the grass, but it was too wet, so yeah maybe some other when we decide to stay longer for the grass to feel dry.

The architecture at the women's garden was simply serene with the white Rock Lake in the background. Beside the DeGolyer house we stopped by to listen to an artist play on the piano while Sripathi had a quick snack. Although I don't have pictures to share, Sripathi was happy to express his image of the arboretum using finger painting. Well he didn't do it on his own I borrowed his fingers to complete this piece. Consider it was part of his Art Therapy project.


Sripathi will be attending an Art Therapy session soon at the Dallas Museum of Art.
And recently I came across a Blind Artist John Bramblitt. So we have a lot of inspiring people for Sripathi to meet in the future.

one day left to live series - 20 months and 22 days

Acceptance!
It is said acceptance is the wise thing to do. There is also a famous serenity prayer.
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

It's over 20 months now. In less than 4 months Sripathi will be two. Well if i want to be celebrating his second birthday i have less than 4 months to accept a lot of things and to 'keep calm and carry on'. In less than four months i have to accept that Sripathi may never be able to sit, may never be able to walk and probably may never be able to talk.

Accepting a special child gets to be okay until i see a neighbor's child running around and playing. Sometimes i think if God has punished me for some grave sin i committed in this life or past. But then again how could a God be so cruel by depriving a child of his childhood as a way to punishment? That is not the kind of God i want to pray to and depend on. God is supposed to be compassionate, to love all beyond all faults. I guess things just happen, well bad things just happen and i still want to believe that God is still on my side.

I remember this great article published on the 'Complex child' by Susan Agrawal Acceptance is a Rollercoaster. i need to revise this for sure!

Life is not about waiting for the storms to pass but learning to dance in the rain!

one day left to live series - 19 months and 22 days

We are now familiar with the Las Colinas medical center. Well Sripathi developed couple of prominent abscess on his legs last week. Usually we try Mupirocin and they help heal, but this time around they got worst and sadly our pediatrician was not available on Saturday and so we ended up in the Emergency Room. Yes our second home.

Lucky for us the physicians assistant only prescribed antibiotic and sent us home. So Sripathi is on Septra for the next 7 days.

In spite of all this, prior to visiting the ER we took Sripathi to a sensory play area, though not in the intention to have him look and feel the place, but for us to get an idea to improve the sensory play area that we are planning to build in house. This was a fun place for all special needs children. I'm sure parents can find such places where they live. Here in Texas, I found out about these facilities through a website called connectionskids.com

one day left to live series - 19 months and 18 days

So we had been to the zoo just once more for an hour! Just to visit the Elephants and Giraffes.








In the meantime Sripathi's blood work results arrived and his zonogrem level was at 15.9 which meant that we still had provision to go up on his meds if necessary. I mentioned to the nurse that Sripathi still gets spams at least once a day. So she discussed with Dr.W. So now Sripathi is on 3 zonogrem capsules every night. That's apart from Keppra. And his spams, though they do occur often, they are not too severe or last too long.
Fingers crossed!


Finally we are talking about Vision Therapy!!!
I had called the school district last week trying to inquire as to when Sripahti's vision services would begin and they told me that ECI had not yet sent his records and that is why the delay.

So the vision therapist from the school came home to asses Sripathi on 14th of June 2011. I was really impressed and content to know that Ms.Carter was aware of CVI and also Dr.Roman's book.

The first thing she suggested was to have a little sensory play area/room for Sripathi with as many sensory, textured, colorful and musical and lighting up toys in and around so that he tends to look and feel them. Initially or rather depending on the child's ability it would be accidental. But sooner or later his senses would be stimulated by the look and feel of his surroundings.

My Hadley instructor Ms.Worman had sent me a link from the wonder baby website; here you can find the instructions to build a PVC sensory area.
http://www.wonderbaby.org/articles/make-your-own-sensory-play-area
Which is cool, but sadly I feel I'm not so capable of following instructions to the dot and that too engineering such a delicate and detailed structure.

First I wanted to try to make a temporary place like a sensory area for Sripathi and have an idea to design something that is stable and suitable for long term.
We had this small table at home which I used as the main play area, then I just started celo-taping stuff and toys and chains and what not to hang form under the table. Then I placed a mirror on one side and surrounded the remaining sides with cushions and toys.

So have a look at Sripathi in is his adapted sensory play area.



Anyways I came up with a better idea of building a sensory area from what I found on Amazon and I discussed these with Ms.Carter today and she was very impressed with the idea.
Here are the stuff I'm planning to use from Amazon

http://www.amazon.com/gp/product/B000G1YW98/ref=ox_sc_sfl_title_9?ie=UTF8&m=ATVPDKIKX0DER
http://www.amazon.com/gp/product/B000KKB2OS/ref=ox_sc_sfl_title_10?ie=UTF8&m=A2UDNPGKURPVSY
http://www.amazon.com/gp/product/B00006RSWT/ref=ox_sc_sfl_title_1?ie=UTF8&m=ATVPDKIKX0DER

Additionally I’m going to buy few pieces of wood to build a frame and nail down the mosquito net on to the wooden frame. Then I'll use sticky back Velcro’s to fix the net frame to the upper part of play yard like a ceiling. That way I can tie things to the net and let them hang around.

Well all this idea and stuff seem great, but I hope I'm some were close to making an efficient play are for Sripathi. I guess I have to trust that well begun is half done!

Meowboy

to the tune of spiderman spiderman friendly neighborhood spiderman

Meowboy Meowboy
rolling on the floor Meowboy

whiskers wide
with "mai" (castor eye mai) applied
Meowboy in disguise

Look down
there rolls the Meowboy.