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Nov 20, 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.
Babies Can't Wait
The babies can't wait coordinator came out today. She was really impressed with how smart Meggy is. She seemed really helpful and is a great listener. She suggested that we apply for SSI for Meggy and try to get her on Medicaid through the Kattie Becket fund.

We have to wait to be evaluated by therapist before we are approved for the program. If we are, we will only be paying 5%. That is less than my copays for physical therapy. She will also help us to apply for the medicaid and SSI.

She was very sympathetic. I was explaining to her about Meggy's emotional well being and why I am concerned. I found Meggy one day with my sewing needle. She was poking herself and saying owe and crying too. It was like she thinks she is supposed to be a pin cushion. When she got her last shot at the doc. office, she actually showed the nurse where to put her Owie and gave right in. The coordinator is concerned there too. We may try to get her into some art or puppet therapy to help.

If we qualify, they will try and supply some emotional support and resources. They actually recommended to us the forum parent-2-parent.com

I told her how helpful I have found this forum as well and that I am glad that they try and help so very much. It sure felt good to think that someone cares. Even if we don't qualify, their therapist will give us exercises for home and get us started on the right path.

It was a nice visit regardless.

Nov 20, 2008
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Isn't is a breath of fresh air to have someone that is on the same page as you and "gets it?" We had our state eval this week too and she was greatly concerned with Z's inability to eat anything...let;s hope we both qualify for the help our LO's need! :)
Nov 20, 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.
I hope he qualifies too. Thanks for sharing. It is so important to get them on track and keep them there.
Nov 20, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i'm glad you had a good visit, it's nice to have "social workers" that are actually social and do a great job i hope you get some great guidance. I live in Fl just below you, we have a primary health insurance but we qualify for Medicaid for medically needy which gives us a Medicaid HMO (we choose medipass)as a secondary heath insurance. we choose medipass b/c that opened us up to CMS (children's medical services) this is a financial service that covers kids with special needs and illnesses. Emily qualified based on her enzyme disorder. We didn't qualify for CMS reimbursement but we do qualify for a RN to follow her case and reflect with me her treatment plan, which is VERY helpful! I would look into see if GA has a CMS type program.

emily didn't qualify for EIC (GA's Kids can't wait) so they couldn't offer us behavioral health resources, which i find disappointing b/c i believe emily thinks she should hurt all the time too. and when she hurts she can't control herself. honestly i questioned myself as a parent but i really do think it is pain related. I did get turned on to a program run through Shand's Hospital, called the Nurturing Program they teach parents of all back grounds with kids, one division of teaching is how to deal with chronic pain. I wonder if they have something like that in GA?

i don't know how it is up there but in FL they make it hard for a minor with medical problems to collect on SSI if your app gets denied you might think about getting a SSI lawyer... Sorry this was so long, i hope it helped!
Nov 21, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
Good I'm glad things went well!!! I hope you get the help you and Meggy need! We'll be in the program for a good while ourselves. We have to pay 15% but it's worth it's weight in gold!
Nov 21, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Several people that I know have encouraged us to get Adriane checked and perhaps file for SSI. A friend of mine who has a little girl with a cleft pallete and CP didn't qualify for SSI so I seriously doubt Oklahoma would pass a little girl who looks so healthy and (other than her speech) is a little advanced developmentally, at least according to her ped. I think she says that she is a little advanced because she expects her to be behind because of all the heatlh issues she has.

I am so glad that things are going well so far. I hope that you get all the assistance that you and Meggy need. I'm sure that they will be helpful. They already sound better than the Oklahoma system!

Check with your
doctor first!