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Old 05-03-2011, 05:30 PM   #1
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Frustrated Preadoptive Fostermom in need of encouragement

*** Just wanted to update: talked to the Orthotics people today and when they changed the angle of the measurement it increased by over 1mm. Which means he falls into the severe catagory for both plagiocephaly and brachycephaly so he should be approved for helmet treatment by Medicaid. Be about a 3-4 week wait for paperwork to process. Feeling so much better.
****
I am not one to vent but things have been so frustrating lately so I just need somewhere to vent.

We are so blessed because we were placed with our son straight from the NICU and knew from the beginning that we would be able to adopt him. This is such a rare thing in the foster care system. He is actually the 9th foster child we have had so I was prepared that things would be a long process and didn't expect much. Thought if adoption was final by time he was 18 months we would be happy.

Anyway, when we brought him home we noticed that he had a very lopsided shaped head. So at about a month I started mentioning it to the pediatrician. I had hoped for a referral to get Cranial Sacrail Massage Therapy which worked amazingly for my niece who has Down Syndrome. But since it falls under a catagory like chiropractic the peditrician wouldn't refer us. Since I was legally not his parent yet I couldn't make the decision.

We didn't realize that he was at high risk for his head to get more misshaped because he was a preemie and had awful reflux. We did try to do things to help with reshaping like babywearing, not leaving in carseat, repositioning, tummy time, etc. But over the course of time things didn't improve much.

Everytime at the peds I'd mention but they just told me it would get better as he developed. But by six months the ped was concerned things weren't shaping up. So he referred to a neurosurgeon who felt like with his development delays he needed a helmet. Since he is 7 months but still not hitting 4 mth milestones (he gets first steps) that it would be better to correct with a helmet.

Sidenote, TRP was supposed to happen Fri, May 6th with him being free to adopt on May 27th. But ADI last month came up with address on birth parents so State had to send cert letter not just run in paper for No Resonable Effort TPR. Anyway we are now looking for Default TPR on first Friday in June. Freeing him to adopt by end of June. Everything has just been about going through process no risk of us losing him.

Anyway, it took us 6 weeks to get into Neurosurgeon and Orthopedics appt and he had a growth spurt which we saw some improvement which I thought was good. Well today the measurements showed that he has moderate/severe plagiocephaly and severe brachiocephaly. All of the measurement were in the severe catagory except one which was 1mm from being severe. So he definitely needs the helmet to help since he has a large head with most of his head growth he needs treatment now. Well Medicaid will only cover if he is severe in all measurements. So in all my trying to help the situation he now wont qualify according to Medicaid by 1mm. And because legally we are not his parents yet we don't have the option to pay out of pocket which we would. we feel strongly that he needs this.

Although everything is proceeding nicely with foster/adopt process it will not be completed in time for us to get treatment. I don't want to complain because we are so blessed in how smoothly things have went for us. It's just I feel like his mommy and know that legally I will be soon but for now I have no rights to help my son right now and it is a hard place to be.

Sorry so long ....

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Last edited by dalynn1997; 05-05-2011 at 06:55 PM. Reason: updating situation
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Old 05-03-2011, 07:32 PM   #2
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Re: Frustrated Preadoptive Fostermom in need of encouragement

prayers for you Mama! This must be so hard-knowing how to help and just not being able to legally-I'm so sorry you are going through this stuggle-wanting to help your lo and not being able to-I will keep you and yours in my prayers that things start to look up for you and that you find/are offered a way to help your lo like you so despriatly want to-it is so obvious in your post how much you love this little boy-I am so happy that other things are going smoothly for you and this little boy found you and your family.
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Old 05-03-2011, 07:36 PM   #3
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Re: Frustrated Preadoptive Fostermom in need of encouragement

Ohhhhhh mama that really sucks!!

Can you go back to the doc and ask them to remeasure? I just wonder if they knew that it was a question of him getting or not getting it they might be extra sure of their measurements, kwim?

I totally know where you're coming from - ours has been with a brain injury/seizures and tests I don't think are necessary (repeat MRIs and EEGs) and have had to do when he was a foster kid, so glad the adoption is finally final and it's MY choice.

Can't wait until June for you!!
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Old 05-03-2011, 07:41 PM   #4
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Re: Frustrated Preadoptive Fostermom in need of encouragement

Talk to the social worker & supervisor as I know when I worked in child welfare, we could usually get funds to pay for these things/private pay if the medical did not cover it and there was money available (depending on the time of year/budget). It is their responsibility as they are the legal guardians.
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Old 05-03-2011, 08:42 PM   #5
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Re: Frustrated Preadoptive Fostermom in need of encouragement

I'd explain the situation to the doctor (a different one if necessary) and ask them to be ''extra sure'' that they measured his head correctly.
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Old 05-04-2011, 07:52 AM   #6
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Re: Frustrated Preadoptive Fostermom in need of encouragement

I agree with getting a 2nd opinion if it'll be covered. Also, would he still be able to get the helmet in June if the adoption is finalized then? It wouldn't be ideal, but would it be an option - maybe under your insurance it would be covered?
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Old 05-04-2011, 08:09 AM   #7
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Re: Frustrated Preadoptive Fostermom in need of encouragement

So sorry momma. I don't know anything about the helmet or how that process goes, but am so sorry that he doesn't qualify by just 1mm... That is a BIG BUMMER.. Do you think the doctors would remeasure and maybe just allow for that 1mm so he can start treatment NOW? I am sending prayers that all will continue to go smoothly with his adoption and treatment. (((hugs)))
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Old 05-04-2011, 08:30 AM   #8
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Re: Frustrated Preadoptive Fostermom in need of encouragement

Thanks for the encouragement! I was in tears last night over all this.

They are going to try to get measurement from different angle so hopefully we can get the +1mm but they didn't act too hopefully. So we are praying for that extra 1mm. We can try and have neurosurgeon and PT to write letters about need for helmet with his develomental delays and hope for the best if they can't get the extra 1 mm.

He is going to have TPR (Termination of Parent Rights) by end of June freeing us to be able to apply to adopt. Then we begin adoption process. That process won't be complete until around end of year. That is why it will be too late to treat since he will be between 12-15 months. Because of some new things lately, it looks like they are going to class him as special needs which will make adoption process a little longer.

The cost of treatment is around $3000-$4000 so I can't imagine State having those kind of funds. I thought we had to pay for initial scan out of pocket abound $120 and CW didn't think that would get reimbursed. If we get the denial, guess we can beg State to let us pay out of pocket.

If he was our Bio child we would just pay upfront, start treatment and let insurance fight it out. Just feel like I have to go along with whatever the State, doctors, etc say.

We actually were forbid to cloth diaper by the pediatrician and we had to comply to that.

Last edited by dalynn1997; 05-04-2011 at 08:34 AM.
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Old 05-04-2011, 08:48 AM   #9
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Re: Frustrated Preadoptive Fostermom in need of encouragement

Quote:
Originally Posted by jenfostermom View Post
Ohhhhhh mama that really sucks!!

Can you go back to the doc and ask them to remeasure? I just wonder if they knew that it was a question of him getting or not getting it they might be extra sure of their measurements, kwim?

I totally know where you're coming from - ours has been with a brain injury/seizures and tests I don't think are necessary (repeat MRIs and EEGs) and have had to do when he was a foster kid, so glad the adoption is finally final and it's MY choice.

Can't wait until June for you!!
We may be venturing down this path. CT scan showed irregularities now Neuro ordered MRI on June 1st and wants to see him monthly and depending on MRI results could want to do MRI ever 6 weeks to monitor. An MRI on him is fully sedated and I hate the idea of it.

Because of this and his development delays, State is talking about classifying him as special needs. he was already high risk of special needs, BM mental handicap, drug exposed, preemie. It is kinda a blessing since it won't hold up adoption and we will keep medicaid.

I guess only time will tell what happens
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Old 05-04-2011, 09:00 AM   #10
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Re: Frustrated Preadoptive Fostermom in need of encouragement

Quote:
Originally Posted by dalynn1997 View Post
Thanks for the encouragement! I was in tears last night over all this.

They are going to try to get measurement from different angle so hopefully we can get the +1mm but they didn't act too hopefully. So we are praying for that extra 1mm. We can try and have neurosurgeon and PT to write letters about need for helmet with his develomental delays and hope for the best if they can't get the extra 1 mm.

He is going to have TPR (Termination of Parent Rights) by end of June freeing us to be able to apply to adopt. Then we begin adoption process. That process won't be complete until around end of year. That is why it will be too late to treat since he will be between 12-15 months. Because of some new things lately, it looks like they are going to class him as special needs which will make adoption process a little longer.

The cost of treatment is around $3000-$4000 so I can't imagine State having those kind of funds. I thought we had to pay for initial scan out of pocket abound $120 and CW didn't think that would get reimbursed. If we get the denial, guess we can beg State to let us pay out of pocket.

If he was our Bio child we would just pay upfront, start treatment and let insurance fight it out. Just feel like I have to go along with whatever the State, doctors, etc say.

We actually were forbid to cloth diaper by the pediatrician and we had to comply to that.
He is legally "their" child and they NEED to find a way to pay for it. If your CW will not advocate for him, you need to go to the supervisor or administrator and make a huge stink. Just like you are saying you will private pay if he were your bio/legal child, they have an equal responsibility. I advocated and 99% of the time when it was reasonable (I asked for everything as the worst case I'd be denied) they approved it. When things didn't get approved, usually it was because the workers didn't even do their jobs and ask as they were too lazy to do the paperwork for the request, etc. Some places don't truly have the money but they need to find it.
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