New here--waiting for a diagnosis

[Anujin]

Hi all,

Many thanks to my friend Olivia for directing me to this forum. My name is Nora and I have a 28 month old son with suspected metopic craniosyntosis. Our son joined our family through adoption; we took custody of him two weeks ago and noticed immediately that he had both an abnormal head shape and a vision impairment.

We specifically sought to adopt a "waiting child" (one who needed extra medical support) and had pursued this child for that reason--but his documented medical needs never included craniosyntosis! We prepared ourselves (and a long list of resources) for *other* medical issues that he may have and now find ourselves starting anew with this potential diagnosis.

I spent much of the afternoon on the phone trying to get an appointment with the craniofacial team here in Austin. We were supposed to have gotten a referral from the International Adoption Clinic, but it sounds like that never went through.

I have the feeling we're facing a lot of medical bureaucracy; any tips on navigating the system, staying organized and being a strong advocate for your child are most welcome.

Best Wishes,
Nora

[fitmomof2ae]

Hi Nora - Welcome to CK! Congrats on the recent addition of your son. Yes, cranio is a condition that many of us had not heard of until it affected our family. I think you could get state assistance. Most states will assist with craniosynostosis medical needs if you qualify based on your income. I'm not famiilar with the adoption process, so I'm not sure how that will work. As far as a referal goes, if you need one, you can get one through your pediatrician.

[kalimom6]

Welcome to CK. My hat goes off to you for adopting a "waiting child." On top of my little man, Jack, who is a metopic baby, we have a 5 year old with special needs. It sounds like you are doing what is needed. Being an advocate sometimes does take a little time to get used to. We were pushed into it the second our 5 year old was born with extreme low muscle tone in a level 1 hospital (no NICU or any special nursery). We had no idea before birth that anything was wrong. With Jack, same thing, different issue. We knew at birth he had metopic, it just wasn't confirmed until he was a month old.
I agree with the referral from your pediatrician. I would also look into Early Intervention. It's a state agency that helps kids ages birth-3. Every state has one, each state calls it something different. They were huge in helping me with being an advocate. They also know what services are available for kids with special needs.
Any other questions, feel free and ask!

[maztec]

Only way I approve of international adoption is for children with medical issues. Albeit, even then I am hesitant due to the rampant amounts of child trafficking. Nonetheless, well done. :)

You are so close to Dr. Fearon, you probably should use his team if you can. Nothing like the joy of having a child, and all the little surprises! :)

[Zara's mum]

Hi and welcome to craniokids! It always fills me with joy (and tears for some reason lol) when i hear of wonderful people like yourselves adopting a child, and that fact that you chose to give a child "waiting" a chance at life with love and support - I am in awe of people like you and honestly, you must love him so very very much! I'm sorry your new son has cranio - it is a tough rollercoaster, but many of us are now "the otherside" and the pain of surgery (although still a painful memory) is just that, a memory in the past, and our kidddies are looking forward to "normal" futures! We're all here for you xx

[C.Mydas]

Congrats on your new addition! We are in Pflugerville and used Dr Fearon in Dallas. Welcome!

[*Jessica*]

Welcome to CK! Congrats on your the new wonderful addition to your family! My son had surgery for Metopic cranio 3 years ago and he is doing great! Hopefully your little one is in the mild category and will avoid surgery, but if not, you must know that all of our kids do SOOO great with surgery and they will amaze you with their strength!

[Anujin]

Thanks for the welcome and advice. We have an ECI evaluation coming up in the next few weeks--hopeful we get services, although in Texas the program has been slashed. Our son is currently on-target developmentally except for a language delay--we're hoping to at least get some speech therapy services.

MAztec, It always surprises me how quick people are to share their judgements of how families are formed. I happen to agree with your position on international adoption, and could probably expound on the topic of ethics in adoption (domestic AND international), but this is not the forum for that. We are very happy to have found our son and to be parenting him; in the string of tragedies that befell him we are the last-best option. We wish he could be with his first family, in his home country and culture, but that did not happen. If he hadn't joined our family he would have spent his life in an institution.

Nora

[Piki]

Welcome to CK! Congrats on the newest addition to your family. I am an adopted child as well. Your son may not have grown in your belly, but he grew in your heart. I'm glad to hear you're being proactive, and getting as much info as possible about cranio. This forum is full of wonderful people who can offer advice or a shoulder to cry on. There are so many resources available. My daughter is going to start early intervention in a couple of weeks for eating. Other than that, she's on par developmentally, and hasn't allowed cranio to stop her from enjoying life to the fullest. Best of luck to you and your family.