Holy hell I'm here.

[chickypoo]

I swear I feel like my not so technologically inclined father more and more every day.

Anyway. Hi. I'm here from TCF. My son O just turned 2 on Tuesday. He was just recently diagnosed through WES with autosomal recessive intellectual disability. Because I guess making a snappy name for a disorder that has affected 8 other people in the world was just not worth the time. Whatever.

He has hypotonia, foveal hypoplasia, nystagmus, strabismus, global delay, ataxic movements, dysphasia, possible language disorder, possible ASD, (we go back in a couple weeks and I think we are proceeding with the diagnosis so that we can start ABA sooner rather than later) he crawls like a champ but doesn't walk. He doesn't have any words and no purposeful sounds, besides his shrieks that mean he's happy of course. He uses a cpap and has a gtube. Oh and he loves music and sounds.

I have 3 older kids and am working on getting custody of my niece so we have a pretty full house right now and a lot going on. I'm glad I found you guys! It looks like maybe this group covers a wider range of kiddos so I'm excited to see if there's anyone to relate to here.

[zaraceli]

Yea, welcome MK, omg seriously for some reason I always think about you and your kids.
I'm so glad you are here.

[chickypoo]

Jul 27, 2017 21:23:13 GMT -5 zaraceli said:

Yea, welcome MK, omg seriously for some reason I always think about you and your kids.
I'm so glad you are here.

Thanks Z! Moving to a new board just seemed hard, but I've been feeling very isolated from the world so I'm trying to be more active. I hope you and your kids are well.

[freezorburn]

I'm glad you've found your way here, MK!

And, thanks for the update on O. Have been wondering how he is coming along.

[urmysunshine77]

I'm glad that you're here. Good luck with obtaining custody!

[freezorburn]

Not sure if this applies to the situation with your niece, but akafred moderates an Adoption and Foster Care board. It is still pretty new and it seems people are just getting to know each other ... here's the link if you want to check it out.

pandce.proboards.com/board/80/adoption

You will also find a few familiar faces here:

pandce.proboards.com/board/82/cloth-diapers-and-beyond

[chickypoo]

Thanks. I think it's a very unique situation. My sister went into cardiac arrest and was without oxygen for a long time so she is unable to care for my niece at this time. They moved to AZ last year and were moving back, but they literally got off the plane and this happened. The dad is in AZ and wants her to stay with us until the future is more certain but my sister can't consent. I'm trying to get all this done by the time school starts and it looks like we have to go to court. Even the lawyers I've spoken with are like holy crap. So yeah.

[freezorburn]

Oh, wow. Praying for your sister's health. How old is your niece?

[chickypoo]

Jul 28, 2017 10:17:35 GMT -5 freezorburn said:

Oh, wow. Praying for your sister's health. How old is your niece?

7. And thanks, we need all the prayers. I still can't believe this is happening to my sister.

[chickypoo]

Just curious how this has 254 views lol...

[mamaturtle]

Welcome to our board!

[chickypoo]

Jul 29, 2017 12:26:36 GMT -5 mamaturtle said:

Welcome to our board!

Thanks

[pipsqueak]

Good to see you MK.

[auntie]

Glad you made it.

Thanks for checking in.

[macchiatto]

Welcome! Glad you make it.
So sorry about your sister.

[waverly]

Hi chickypoo. So sorry to hear about your sister. Big creepy internet hugs.