August 23, 2013 by kruckr
When Henry was still in the NICU we applied for SSI benefits for him. The Wolfson’s social worker told us he’d have a better chance of getting approved while he was still admitted. When we got him home, I called to let them know (because most babies in the NICU automatically qualify, but benefits change once they’re home). Weeks went by without hearing from anyone, so we also applied for Medicaid online. Roughly a week later, we got a letter saying we didn’t qualify for medicaid because our income was too high. Then, yesterday I got a letter with Henry’s medicaid identification number. So, assuming that he got approved, I called the number on the letter to find out more. I entered his SSN and got an automated message saying we didn’t qualify for benefits because of our income (AAHHHH!). However, an application was forwarded to Florida Kid Care (a lower cost/cost-sharing insurance program). I called the number for Florida Kid Care, but they said the application was still processing.
Feeling confused and frustrated, I called the Social Security office (where I originally applied) again to see if they could give me some more answers. Apparently they think Henry is still in the NICU and they have him in paid status for SSI (even though I called about four times and left messages to tell him that he’d been discharged). I was then transferred to someone else to assist with my case and was met with their voicemail. I personally believe that the social security voicemail system is somehow forwarded to the North Pole as I probably have a better chance of hearing back from Santa Claus than an actual government employee.
Some may be asking why I’m even going through all of this. Well, having medicaid for a child with special needs would be the equivalent of winning the lottery. Henry isn’t even two months old and he’s already met his out of pocket max for the year. The surgeries and doctors visits alone are astronomical. Let alone, the therapies and other special needs equipment he’ll need as he gets older.
Even if we don’t end up getting medicaid, we would be perfectly happy getting Florida Kid Care benefits because it’s a lower premium per month than private insurance and there is no coinsurance. At this point, I would just like any answer.
On another note, we got a call from the cardiologist this morning. After conferencing with his team he believes it would be best to proceed with the heart surgery first (probably the third or fourth week of September). He thinks Henry will be better off if we can eliminate the breathing and feeding difficulties associated with his heart condition so he can be stronger and I’m sure the plastic surgeon will feel more comfortable operating on his lip once his heart is healthy. I will admit, I had a bit of a breakdown when he told me. He would have been having his cleft surgery then anyways, but emotionally preparing myself to send my infant son off for open heart surgery is a little more daunting than a lip surgery. Especially combined with the stress of having to go back to work.
As I stated in a previous post, Henry will have to stay in the PICU for about a week and then in step-down recovery for another few days. It’s still weeks away, but I’m already having flashbacks of having to leave him in the NICU. I know this is a different circumstance, but it doesn’t make it any easier to think about. It sounds like we’ll be doing the cleft surgery in December, but that should only be a few days of recovery.
We also had a physical therapy appointment today. That went pretty well. He’s seems to be on track developmentally so far. He has a tendency to favor the left side when he’s turning his neck (I think because that’s the way he turns to eat), so we’ll be working on some stretches and exercises to help correct that. He should be able to start PT twice a week when he’s in daycare.
We will continue to need prayers, thoughts and support of those near and far. Henry continues to handle everything beautifully even though his mommy feels like a nutcase most of the time. Here’s a picture of my beautiful boy today:)