How is little Benny G aka B.I.G?

[Liz CA]

I am still reeling from this past Christmas when there were three board babies in NICU.

Thinking of you and hoping you are recovering and Benny is growing in every way!

[Guest]

He is doing great! We are finally over some of the nursing bumps and he is eating more consistently without being too sleepy. His weight on Tuesday was up to 6 lbs 7 oz and he has been gaining slightly more than an ounce per day, which is above his target.

 

We do still see some tremors in his movements, especially his left side, and his head control stinks, but it's also improving as he gains weight and strength. Sleeping schedule is getting better as well. We are starting his private physical therapy next week and I'm looking forward to seeing what we can work on with him to strengthen some of his motor issues. Many seem to be improving on their own.

 

I solved the milk donation problem with finding a lady who has no issues with the trace blood pressure meds for private donation - I have about 500 oz I'm giving to her this weekend. In addition to that I have over 200 oz from when I stopped all medication that I'm sending to the Colorado milk bank, and I've kept 50 oz for my own stash plus whatever I pump each day. I'm down to pumping 1-2 times per day and getting 20-ish oz, but the rest he is eating as my supply has ratcheted down to meet his demands (I had way too much milk for what he was eating so it's been quite the balancing act to not get engorged and make too much but not let it scale back and make too little!).

 

I feel like I need a Dairy Queen sticker :D

Edited January 27, 2017 by Arctic Mama

[ktgrok]

oh I'm so glad!!! And if it helps at all, my mostly typical babies had some tremors and such, and some issues with strength that resolved all on their own. (no one even told me, i thought it was just cute....sigh...then one day someone finally told me it was a signal of lack of strength or something..but by them it was almost gone)

[Liz CA]

Fantastic update. It will be interesting to hear what the therapist thinks after the evaluation. I was just reading some research on the plasticity of the brain and Benny came to mind.

I hope CHM (?) is taking care of all the expenses from birth and NICU and you can check this off as being taken care of!

Post a picture now and then. :)

 

[Guest]

Let's just say on the expense front we still have a car or two chunked out of our accounts. Reimbursement is going to be slow. And I am totally confused on how to navigate Medicaid by diagnosis instead of income. Ugh.

[Insertcreativenamehere]

Let's just say on the expense front we still have a car or two chunked out of our accounts. Reimbursement is going to be slow. And I am totally confused on how to navigate Medicaid by diagnosis instead of income. Ugh.

 

My 4 yo has Medicaid based on his diagnosis of Down syndrome rather than income. In our state, we access it through a program called TEFRA. Maybe it is called the same in yours? The hospital was very helpful in assisting us with this; could you check with them? 

[Liz CA]

Not sure if Arctic Mama has a definitive diagnosis.

Arctic Mama, I feel for you having to navigate the Medicaid maze.

I want to encourage you to take care of yourself as well. You all came through a traumatic event. Hope 2017 will be peaceful and full of good surprises - perhaps one of them Medicaid.

[Ottakee]

Glad he is doing well.

 

In Michigan we call Children's Special Health Care Services through the Health Department for Medicaid. You might also be able to apply for SSI based in his diagnosis as well. Even if he doesn't qualify for a check each month he might still get the Medicaid.

 

Did NICU have a medical social worker you can talk to?

[prairiewindmomma]

Arctic Mama, if your NICU social worker can't help you, then I'd call the CO application assistance site. Here's the page on how to buy in for children with disabilities: https://www.colorado.gov/hcpf/medicaid-buy-program-children-disabilities. Note the 1-800 number on the page if you are still having problems figuring out how to apply.  Sometimes there is retroactive applicability--not sure about that in CO, but it's something that our NICU social worker mentioned.

[Liz CA]

Arctic Mama, if your NICU social worker can't help you, then I'd call the CO application assistance site. Here's the page on how to buy in for children with disabilities: https://www.colorado.gov/hcpf/medicaid-buy-program-children-disabilities. Note the 1-800 number on the page if you are still having problems figuring out how to apply.  Sometimes there is retroactive applicability--not sure about that in CO, but it's something that our NICU social worker mentioned.

 

I think Arctic Mama and Benny are in Alaska.

 

[prairiewindmomma]

I think Arctic Mama and Benny are in Alaska.

 

 

 

**duh**

 

Sorry!  I shall go drink my diet Pepsi and regrow my brain.

[Guest]

He has a diagnosis (grade II hypoxic ischemic encephalopathy), I just don't know what paperwork we need to verify it. The nicu people could help us with the income based one but not the diagnostic services. I'm trying to find the right people to call and asked our pediatrician, which is who the nicu said could help. She is looking into it apparently?

Edited January 28, 2017 by Arctic Mama

[Guest]

Well good-ish news, I just got a letter in the mail today from our early intervention/infant learning assessment service, FOCUS. Their assessment along with the pediatrician verifying the diagnosis from the NICU should allow us to apply for the Medicaid waiver for Intellectual and Developmental disabilities services through DHSS, though I think he doesn't qualify for the one for children with complex medical needs since he hasn't needed supporting medical equipment on a daily basis. Still, the former program is apparently based on individual need, diagnosis, and income and not the family income, so it should be much easier for Benjamin to qualify. The problem is that they draw applications like a lottery apparently, so the processing time is very slow.