Musings of a Marfan Mom

January 23, 2013
by marfmom
5 Comments

End of the (Synagis) Road

You know that I’ve been fighting the good fight for 4 months now to get J the vaccine for RSV, synagis. After the most recent denial, my friend Danielle called the company that manufactures the drug and pled our case on my behalf. The case manager she spoke with agreed to try to help us, and Mark and I immediately got paperwork together.

Long story short, there was a lot of back and forth, then we found out that the case manager assigned us (different from who Danielle had spoken with) missed and/or ignored one of the most important forms we’d sent in, therefore stalling our case. Once this was cleared up Friday and a new case manager assigned Monday, things moved very fast. Everyone we spoke with sounded optimistic that J would be able to get the medication.

Yesterday morning I got an email that J was denied šŸ™ When I called to ask why, I was told that it’s against company policy to explain denials. Then I called our insurance company to find out the out-of-pocket cost for synagis. I was expecting $1,000 – $1,500 a shot. Turns out, it’s $6,000 a shot! That would be $18,000 out of pocket, since there are 3 vaccines left to get. I laughed when the woman told me. I know a lot goes into making the medication, but seriously? What good is a vaccine that insurance companies fight tooth and nail to cover because of the cost, and then parents have NO hope of scrounging to pay for it out of pocket? It’s only helping a fraction of the children it should be!

I feel sad. I worked so hard and still lost. This aspect of keeping my son safe is out of my control. We will continue to minimize his contact with other children, sanitize around the house, etc. obviously, but I wish he could have gotten this too. It’s not right when insurance companies can override the wishes of multiple doctors.

January 21, 2013
by marfmom
7 Comments

Adoption Anxieties

This post is a whole mish-mash of adoption thoughts. I find that the closer we are to the end of the beginning of this adoption journey, the more anxious Iā€™m becoming.

What if we never get picked? What if we wait for years and years and no mother/parents ever decide that we are the right family to place their child with? How will that feel? How will M handle that? He is soooo excited about the possibility of a sister. After reading over other hopeful parent profiles to figure out how to develop our own, itā€™s hard not to feel inadequate.

What if we get picked? Are we ready for this? What will a 3rd child feel like? I mean, I FEEL ready for this, but itā€™s hard to prepare for, you know? Especially when a match could happen with a few months notice, or after the baby is born, in which case you hop in the car or catch the next plane. And a 3rd means Mark and I will be outnumbered!

I know I have to give up control, that an adoption will happen or not happen on its own time. But just as often as I hear that, I hear ā€œbut there are things you can do to help along the process.ā€ So, weā€™ve built our online profile, created our own website, and told our friends. Do we pay to advertise? Create pass along/business cards? I donā€™t know.

As weā€™re wrapping up this time of preparation, I feel like I still need to be doing something. So, Iā€™ve been trying to read blog posts by open adoption bloggers…some birth/first mothers, some adoptive mothers, some adult adoptees. And you know what? They kind of make me feel worse. This weekend I came across a post where the commentors decried hopeful adoptive parents with any sort of preference in the type of child they were willing to adopt (i.e. – those who say that they arenā€™t open to adopting a child with x or y diagnosis). Logically I know that I shouldnā€™t be bothered by judgmental people like that (and itā€™s not like the blog post was the first Iā€™ve encountered this) and we should do what feels right for OUR family, but I still felt guilty for awhile that we – while definitely open to some special needs – arenā€™t open to everything. But at the same time, we have to balance a new child’s needs with our current realities.

Also, many of these same bloggers allude to how difficult open adoption is, but at the same time adding ā€œbut itā€™s totally worth it!ā€ I donā€™t need sold on how ā€œworth itā€ it is…we get that. But could someone explain whatā€™s difficult? Our agency hasnā€™t talked about what happens after the adoption at all. Obviously stories are personal and the whole world doesnā€™t need to know details, but some sort of ā€œthis is what you might want to expectā€ would be really useful. Reading the same ā€œwe were totally unprepared for how hard it is, but itā€™s so worth itā€ line is kind of making me nervous. If those of you who have gone before felt clueless, can you help those of us (hopefully) coming through the ranks to prepare?

Finally, itā€™s also difficult to read about ethical adoption (the very reasonable assertion that expectant parents’ rights to be upheld in the adoption process) without coming across the people who would do away with adoption totally, or those who want to make sure adoptive parents know “their place,” that they are not the “real” parents and only formed their family by tearing apart someone else’s. I think Iā€™m just going to stop reading anything.

Honestly, I donā€™t even know where to talk about these things. Iā€™m not involved in any online adoption groups. Our agency has one that Iā€™ve reached out to, but they donā€™t have an event till the spring. Our families donā€™t really talk about the adoption much, I guess because to them itā€™s still something ā€œin the future?ā€ We have some friends who have adopted or who have placed a child for adoption that Iā€™ve asked questions of, but thatā€™s about it.

So for those of you who have been here, how do you let the worries go? How do you just enjoy the waiting period?

January 18, 2013
by marfmom
0 comments

Friday Favorites

Itā€™s Friday, so you know what that means!

Come on over and link up the favorite post that you wrote this week. I promise Iā€™ll come over and comment on each of your posts. I hope that youā€™ll spread the love and visit the blog or two above yours too. Iā€™ll leave the linky up through Monday morning.