Posted By Posting
Nov 12, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Finally-referral to Babies Can't Wait
We got the initial phone screening today. The lady said that what I am describing certainly sounds like low tone. With everything else, per their screening test, she is ahead of the game developmentally.

That was Childnren's First in GA. Our next screening test will be with Babies Can't Wait in 2-3 weeks. Some one will evaluate her home surroundings and work on paper work. Then a few weeks from that we will meet with therapist-IF she qualifies.

The lady who screened us says it will be up to the discretion of the next phase of screening because gross motor wise she sounds slightly delayed, but otherwise she is ahead of target.

I don't know what to think, but we will see where this gets us.

Nov 12, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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You know, it took a ridiculous amount of time to get Quinn approved for therapy. The reason being was that according to their screening, she was doing age-appropriate things with a slight delay. She has always been "slightly delayed". The problem was that she was low tone. For instance, Quinn could climb on a couch, but the amount of time and strength it took her to do so was terrible. She could crawl, but her shoulders collapsed after every foot because she wasn't strong enough to hold herself up for long periods of time. when she finally could sit up, it took her 3 months to master it well enough to not fall over after a few minutes. When she ran, she drug her right foot. but she was still "able" to do these things, which wasn't qualifying enough. That's just a few of the many things that discouraged me enough to fight to get her in. The only thing that got our foot in the door with her Inland Regional program was her profound delay in speech. By two years old, the only word she spoke was mama and that took a lot of effort to get her to even say it. Now, here we are, a year later and she doesn't even need speech but she is still going to physical therapy for her low tone. It can be really hard to get them into therapy, but once they are on the program, they don't discharge them until they are completely caught up (for the most part). Now, Quinn qualifies for her services until she is 5!!! -Sarah
Nov 12, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Thank you Sarah,

That is encouraging to hear. Things like her not holding herself up in the car seat and stroller, and the way her head just kinda falls a lot when she is running around playing are worrisome. Although I am sure with a little guidance and support, I can get her on the right track.

It has taken me till now just to get anyone to give us a referral. Although technically since she was in NICU, she should have been followed from birth.

How is Quinn today? I hope she is feeling better. How are you holding up?

Nov 12, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Wanting to wish you good luck!
Nov 12, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Hope they speed things up for you...but at least you have a foot in the door!
Nov 12, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I hope it goes well and you get some therapy for sure. Our epdi todl us (before our EI eval) to make Jedd sound as bad as we could...LOL We din't have to. For example, if the hcidl has only done the itme once or twice I wouldn't count it. They need to do it consitanetly JMO...LOL
Nov 13, 2008
camile- twins with reflux
Thomas and Lucas_2
I hope Meggy applies for therapy. My twins used to get PT, OT and ST/FT. I think the PT was especially helpful for their low tone and torticollis. I am sure there are many different approaches to PT out there. Our therapist spent most of the time teaching us how to do the exercises. At first I was a bit surprised by that, but then it made sense since we spent most of the time with our children and can profit from many different situations, even playtime, to put some of it in practice. I did ask her for some help with the torticollis exercises though. Those were so tough...because the neck muscles are so tigh, you have to force them a bit and that hurts. They used to cry intensively during those exercises. I had to do them 3 times a day and dreaded those moments. I had to take my mind away and think "I am doing this to help them". When it was over I would fill them with hugs and kisses. Good luck to Meggy. Keep us posted.
Check with your
doctor first!