Check-in?

[Stormtroopooper]

This board is small, but would you guys like to do a check in?

We could just state where we're at, how we're doing handling the disabilities, any rants, and GTKYs.

What say you?

[luvboston]

Yes!

[marajadeskywalker]

I'm in

[Stormtroopooper]

marajadeskywalker luvboston

Well let's just start here.

Where we're at: HC will not for the love of all that is holy wear his glasses. I've given up. We're trying to potty train, and I'm got enough on my plate. I figure we'll try the glasses again when we've jumped over that hurdle.

How I'm handling everything: not a whole lot has changed with his contact regimen, so we're still doing well with these. No patching of anything, do that's good!

Rants: the pool. HC loves to swim but hates wearing goggles and doesn't want his contacts taken out before we go to the pool, so I take him and make him keep his head above water and freak out if he splashes water in his eye and stuff. It's more stressful that fun.

GTKY: just a random about me--we are starting domestic adoption! We have our first meeting with the social worker next week, and I'm nervous/excited.

[luvboston]

Well DS needs more brain surgery some rare and we have to make the decision to allow the surgeon to make the call when he's in there so freaking out about what to allow.
Also having ridiculous problems with Children's hospital bc evidently acting like human beings is beneath them. DS is in a ton of pain, has lost balance/coordination and we just got his helmet and now the surgeon says he shouldn't wear it. DS shrieks in his sleep. Que crying bc we are all a nervous wreck that he's gonna get hurt. He's going to therapy at the hospital every day and this is all exhausting.

Handling: ha, in my sensible brain I am running away, in my crazy brain I'm actually not too bad just getting burnt out from no sleep and constantly worrying, fighting and trying to figure out what's wrong with my boy while trying to bond with my newborn who I feel guilty for having. And guilty my DD isn't getting enough stimulation and attention.

Rants: my mother she is fighting with me about everything and I'm so sick and tired of it. Of all the ppl that should understand where I am coming from it should be her bc she had a super sick disabled kid.
O and Amazon cs can go to hell they shipped me the wrong diapers but we're not willing to send another pack overnight or price match.
Q: I need to get a pedicure in the summer otherwise I can't stand to have feet. If they are at all rough it drives me mad.

[luvboston]

Stormtroopooper fx for adoption

[Stormtroopooper]

luvboston, I'm so sorry you're going through this. I don't know much about your son's disabilities, but I know a little bit about dealing with Children's hospitals and brain surgeries. My sister's son had brain cancer, and he had multiple surgeries. Any kind of surgery is nerve wracking. Brain surgery has got to be the worst.

I can understand about feeling guilty about your newborn, but you've just got to do the best you can right now. Some days the stress is overwhelming, you're burnt out, sick, frustrated, hurt, and on those days, it's okay not to be super mom. On those days, it's your job to just keep them fed and breathing.

I pray that what you're going through is just a season and that the doctors and medical professionals can figure out what's wrong and fix your son. I can't imagine how you're feeling, but I've seen it in my sister.

All I want to say is God bless you. Just remember, you're a good mama. You're fighting for and with your child, and your kids are lucky to have you as their mom.

[luvboston]

Stormtroopooper he was paralyzed in both arms now the left is back to 90% and the right is at 10% but has stalled, he also lost his balance

[chickypoo2468]

I'll do a check in. I don't always remember to check this board bc there's not much happening so if there's routine posts I'll be sure to check in more.
I'm still a little confused about why it's separate from the SN board though. Is that one more behavioral?

[Deleted]

Hi-

We are dealing with mild/ moderate hearing loss and speech therapy. Also CHD. He had heart surgery about a year ago to fix that and is being followed now every 2 years by cardiology due to missing part of a valve.

[marajadeskywalker]

Hey, sorry I'm late,

Where we're at: A was born 9 weeks early and had CP. He is walking independently for the most part now while wearing AFO's. We still have lots of crashes and he is really starting to get frustrated with his lack of mobility. He's 2 and a half years old, and we are starting to potty training which we are having mild success with.

How I'm handling everything: ok I think. He is trying so hard to be independent and keep up with his cousins and he is getting frustrated.

Rants: We are really getting to the terrible part of the twos and the whining/tantrums and it is very hard. He's acting like a spoiled little jerk and I don't know where it has come from. I'm hoping it ends soon because I can't have him live on a time out lol

GTKY: I have seen my in laws every day for the past four days and I'm so done. I can't wait for this weekend to be over.

[marajadeskywalker]

Good luck with the adoption @bananalattuce

I'm so sorry that you have to make these decisions and deal with all that luvboston, I can't even imagine.

[brie]

P is 17 months with spastic hemi CP.

He is kind of cruising now. We don't have any appointments until August aside from therapies. His therapeutic preschool is a godsend. He is walking and saying a few words and very happy.

In August he goes for a sedated MRI and joint craniofacial team appointment in Chicago. He has fused sutures and a skull depression that may require surgery at some point. It will be our first MRI discussion since he was diagnosed so I am anxious about that. However I finally feel confident in his care team which is nice.

[luvboston]

brie the MRI went really smoothly for us I would recommend making a plan of how you are going to put him to sleep bc they just took ds and wrapped him in blanket and scared the crap out of him when I could have held him to go to sleep.