re: Genetic Disorders. [Support Thread.] [GDS]

Quoting beandis:" Thats one thing that is nice about where we are - our therapies can go through the summer if we opt to. ... [snip!] ... our speech and b-3 teacher did. 5 Little Monkeys jumping on the bed really helped get my son to start talking oddly enough"

Gomer LOVES the monkeys! Next time he's over he'll have to sing that with Kogs  

Quoting Brandi-*EOM*:" Has your LO ever been able to eat purees or solids? If you don't mind me asking, what is the trach for?"

She was eating baby cereal at 4 months. Then she ended up getting an NG tube, then about a month later she got the G tube. She has started eating again in December, but its a struggle. She has no interest at all in eating.
She has a trach because she has tracheal malasia. Her airway collapses when she sleeps. She's doing really good though and they are hoping by next summer she might be able to get it out.

Quoting charlie waffles:" Gomer LOVES the monkeys! Next time he's over he'll have to sing that with Kogs  "

I think that was one of the first songs that Kogs actually really started imitating some vocalizations - he pointed his finger and would say "mo mo monk" for no more monkeys jumping on the bed. After that was itsy bitsy spider - he didn't do quite as much vocalizing with that just a few random things here and there, but he loved all the finger play parts for that one.

Quoting beandis:" I think that was one of the first songs that Kogs actually really started imitating some vocalizations ... [snip!] ... as much vocalizing with that just a few random things here and there, but he loved all the finger play parts for that one."

Girlie doesn't do any finger play songs, but she LOVES it when we sing anything.

OT, do you want to get together sometime this weekend? MIL/BIL are in town so we can come by your house if that's easier for you guys. Text me!

Hey ladies!!! It has been forever since I've been on here. Bad Sam! haha I just wanted to jump in and see how everyone was doing. Summer is going pretty good for us. Kind of slow, but nice. We ordered Signing Time for Lincoln to help all of us communicate better. We watched one of the videos today and he did 2 new signs, which was great.   Now, I just have to make sure and be consistant and do them daily.

Today girlie had her first appointment with the new urologist (original urologist retired this month). We were NOT impressed. Our appointment was at 10:15. Got into the exam room at 10:20/10:25. Doctor didn't come into the room until after 11. Did a quick u/s on her bladder and asked us if we wanted to wait to try to cath her or do it right then (there wasn't much fluid there and we've been having some cath issues) and I said we'd wait. WORST. IDEA. EVER.

They had us go back to the waiting room (aparently the room we were in was "cold" but IDK if that's the real reason why) where we were supposed to wait for 20 min and the nurse would come back and get us and then she'd have another u/s done and we'd redo the cath. They didn't offer her any fluids during this time even though they were wanting her to fill her bladder more. Her old nurse came into the office to see us and got girlie some water. This was about 11:15.

11:45 hubs asks the receptionist when we'd be called back again.
12:15 I ask the receptionist when we'd be called back again.
12:25 we're FINALLY brought back to the room and have the u/s done and the nurse shows us what we're doing wrong. He then asks us if the dr told us when to come back for our follow-up. Um, when would he have told us? We didn't see him for more than 5 minutes!

Yes, I did complain about the appointment. The nurse apologized and said it was his fault that the schedule was jacked up (they hadn't scheduled us enough time supposedly). If our next appointment is this bad, we won't have a 3rd. They can transfer us to Mayo for all I care (Rochester is an hour closer anyway and our insurance covers both). We LOVED Dr M and I'd had such high hopes for Dr B  

Quoting charlie waffles:" Today girlie had her first appointment with the new urologist (original urologist retired this month). ... [snip!] ... care (Rochester is an hour closer anyway and our insurance covers both). We LOVED Dr M and I'd had such high hopes for Dr B  "

Sorry to hear that the new doctor was a dud. It is very frustrating when you dont get the time and care that you need with a doctor. I hope it goes better next time.

Hi ladies,

I was wondering, is this thread strictly for GENETIC disorders, or is it for other sorts of disorders also? I mean, I know it seems self explanatory, give then "genetic" is in the title, but then I saw the list and saw, like cerebral palsy listed for one members child.

I don't have a diagnosis for my daughter yet (we're in the middle of testing right now), but it's sort of hard to find ladies that understand. It isn't a genetic disorder that we know of though, so I wasn't sure if this is the right place for me.

Thanks, and don't feel bad to tell me this isn't the right thread for me, lol. I don't mean to intrude!

My DD's issues aren't genetic but everyone was more than welcoming so post away  

I'm Erin and my 2.5 year old DD was born with bladder exstrophy and had seizures of unknow cause. I also have an almost 6 year old DS who is totally healthy.

Quoting charlie waffles:" My DD's issues aren't genetic but everyone was more than welcoming so post away   I'm Erin and my ... [snip!] ... was born with bladder exstrophy and had seizures of unknow cause. I also have an almost 6 year old DS who is totally healthy."

Thank you!

How's your daughter doing now?

We're in the middle of LOTS of tests (have an EEG and an MRI coming up). She's having a few different issues. She is 17 months old. She's sleeping like 19 hours a day at least, she's not talking really at all yet. She is having trouble with the left side of her body. Like, it's weak and she's having trouble walking with that side and she can't lift heavier things with her left hand that she can with her right. The neurologist said it could be a few things including seizures, cerebral palsy, or a tumor.

But not a lot of mom I know have been through anything like this, so I'm glad to find a place where moms understand about having a kid that might have some problems. Oh, she was also a 27 week preemie which may have contributed to whatever is happening now.

She's doing REALLY well lately. She "graduated" from the neurologist last summer which was awesome. She also hasn't had ANY UTI since her surgery in May. This is the longest in more than a year she's gone without having an infection. I'm considering the surgery a success right now! She also recently (finally) started talking in 3 and 4 word sentences. When this kid decides to make progress, she makes it globally  

Quoting charlie waffles:" She's doing REALLY well lately. She "graduated" from the neurologist last summer which was awesome. She ... [snip!] ... recently (finally) started talking in 3 and 4 word sentences. When this kid decides to make progress, she makes it globally  "

That's great! She sounds like she's doing wonderful!

She really is doing well, thank you  

Our EEG is Tuesday, so tomorrow I have to keep Teagan up. She can only sleep 5 hours (normally sleeps 15 hours) during the night and no naps in the morning. They want her sleep deprived!

Also, I'm going to call since I haven't heard yet about scheduling the MRI. I just want all this testing over with and to have a dx so we know whats happening and where to go from here!

So we received a letter Thursday saying that they're no longer considering DD "disabled". Now I've got to write them a letter to formally appeal their decision. I'm also trying to get her signed up for Katie Beckett as a supplemental insurance. Mine doesn't cover her catheters (right now) or much of her appointments at the pedi urologist. Fun stuff <sigh>