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the BEAST Wisconsin 15638 posts
23rd May '11

*pokes head in*

anyone here lately?

Girlie had a Mitrofanoff done on 5/4. We go back tomorrow to see if the tube gets to come out. Unfortunately this is likely her last visit with her current urologist...he retires next month :( But the new urologist scrubbed in during the surgery and exstrophy is his specialty so I'm confident that he'll be good for her.

Hope everyone else's LO is doing well!

Izaac.&.Aliyah's Mommy 2 kids; Sparks, Nevada 46 posts
24th May '11

This what i have been looking for. My son has DS and I have been trying to find other mothers who's Daughter/ son have DS as well.

the BEAST Wisconsin 15638 posts
24th May '11

monkey had her last appt with her current urologist today. he's been her dr since the day she was born. i printed out a pic of monkey with the dr and his nurse and gave a copy of it to each of them and also gave them each a thank you card. i can't believe that we're never going to see him (and her) has her doctor. it's probably not going to hit me until we see the new dr for the first time a month from today...

*CouldntBHappier!* [GDS] Due June 21; 3 kids; Ashland, Ohio 634 posts
7th Jun '11

Hello,
My name is Nicole and my daughter Caelyn has an unknown genetic syndrome. She has been going through testing since birth and we have yet to find out any answers. She has a small brain and small cerebellum. She has a tracheostomy and a g tube

Brenna Nelson-Kemp Due July 16; 2 kids; Texas 7 posts
7th Jun '11

Hi, my name is Brenna. I have 3 gorgeous little girls. My second daughter, Morrigan (1), was recently diagnosed with microcephaly. Her brain is the size of a 3 month old's and she's only gained 1 lb in the last 6 months. Right now, she weighs 15 lbs. She's going to have to get a g-tube put in since she can't gain weight and has so much trouble eating.
She's severely developmentally delayed - she can't walk, talk, sit up or hold her head up - is partially blind (her eyes don't dialate normally) and the doctors think she may be having seizures, but she's the sweetest little girl anyone could meet. Her laugh is so contagious that it's impossible not to smile when you see her.
Does anyone else have a child with microcephaly or something like it?

*CouldntBHappier!* [GDS] Due June 21; 3 kids; Ashland, Ohio 634 posts
7th Jun '11
Quoting Brenna Nelson-Kemp:" Hi, my name is Brenna. I have 3 gorgeous little girls. My second daughter, Morrigan (1), was recently ... [snip!] ... that it's impossible not to smile when you see her. Does anyone else have a child with microcephaly or something like it?"


Caelyn does. She also has a trach and a g tube. We have yet to get an official genetic diagnosis. She has some "unknown genetic syndrome". She also cannot walk or talk or sit up. She has glasses and they have helped her tremendously!

Brenna Nelson-Kemp Due July 16; 2 kids; Texas 7 posts
7th Jun '11

Quoting *CouldntBHappier!* [GDS] :" Caelyn does. She also has a trach and a g tube. We have yet to get an official genetic diagnosis. She ... [snip!] ... some "unknown genetic syndrome". She also cannot walk or talk or sit up. She has glasses and they have helped her tremendously!"

That's what they're saying with our Momo. Microcephaly is the only thing she's been diagnosed with, but her doctors still don't know exactly what's wrong with her. They've been doing genetic testing since January and have yet to figure out what she has. My husband and I think it may be Rett's Syndrome, based on all of the symptoms she has.
Momo has an appointment with an opthamologist (I know, I mispelled it) next month to see what's wrong with her eyes. When she went to TCH, they did tests and found that her optic nerve is smaller than it should be but now they're thinking that it's something in her brain that's causing her vision problems.



Good luck with your daughter. I know it can be rough when you don't know what's wrong. Hopefully they'll find out what's wrong and give you an answer for what she has.

*eom* 35 kids; Washington 8510 posts
14th Jun '11

I hate summer now. We are still on the waiting list for Speech and OT for the summer since school is out and b-3 therapy wont be back until October.
I hope zoey gets in soon, i don't want her to lose any progress she has made this year. The therapist are hopeful that she may sit one day if she can just control her head. No signs of seizures yet, but she may need a feeding tube soon. That thought scares the hell outta me.

*eom* 35 kids; Washington 8510 posts
14th Jun '11

I also wanted to post about the warnings on the Simply thick. The medical suppliers never called me until week + later so i want to make sure everyone knows about the recall on all the packets.



They sent me the jugs of the simply thick instead :roll:
No way we are going to use it. Since she stopped using it, she can poop again and she isn't so congested anymore.

*CouldntBHappier!* [GDS] Due June 21; 3 kids; Ashland, Ohio 634 posts
14th Jun '11
Quoting Brandi-*EOM*:" I hate summer now. We are still on the waiting list for Speech and OT for the summer since school is ... [snip!] ... just control her head. No signs of seizures yet, but she may need a feeding tube soon. That thought scares the hell outta me."


My daughter has a G tube and its no big deal!! I was scared at first, but its so simple and has helped her tremendously!!

*eom* 35 kids; Washington 8510 posts
14th Jun '11
Quoting *CouldntBHappier!* [GDS] :" My daughter has a G tube and its no big deal!! I was scared at first, but its so simple and has helped her tremendously!!"



I really don't know how it works. I'm just afraid I will do something wrong and hurt her.

*CouldntBHappier!* [GDS] Due June 21; 3 kids; Ashland, Ohio 634 posts
14th Jun '11
Quoting Brandi-*EOM*:" I really don't know how it works. I'm just afraid I will do something wrong and hurt her."


Yeah, I felt like that too. Its super simple though. You just have any extension that will hook up to a little button in her stomach and feed her. My daughter used to be hooked up to it 5x/day for 30 minutes, but now she's only on it 3x/day for 20 minutes. Like I said, it was scary getting started, but just like her trach it becomes part of our daily routine. Now tube feeding is as easy and routine as changing a diaper. Please feel free to talk to me anytime. I never had anyone to talk to and thats what made it worse for me.

beandis 34 kids; Wisconsin 6996 posts
14th Jun '11

Thats one thing that is nice about where we are - our therapies can go through the summer if we opt to. In fact, Kogs has turned 3 and graduated from birth to three, but since he turned 3 in May (with only 3 weeks left of school) we were able to get him continued speech therapy through b-3 over the summer. I wouldn't be too worried, just constantly talk around her and with her - finger plays were also fun things our speech and b-3 teacher did. 5 Little Monkeys jumping on the bed really helped get my son to start talking oddly enough

*eom* 35 kids; Washington 8510 posts
14th Jun '11
Quoting *CouldntBHappier!* [GDS] :" Yeah, I felt like that too. Its super simple though. You just have any extension that will hook up ... [snip!] ... changing a diaper. Please feel free to talk to me anytime. I never had anyone to talk to and thats what made it worse for me."


Has your LO ever been able to eat purees or solids?
If you don't mind me asking, what is the trach for?

*eom* 35 kids; Washington 8510 posts
14th Jun '11
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"

Aww, the monkey game is a good idea!



We live an hour and 15 minutes from any speech or occupational and our town is extremely small. I wish the school would continue providing services here. It just sucks that she is going to get used to these therapist and then 3 or 4 months later leave and wont see them for another 9 months ( if we can even get her back in next summer). It took her a few months to get used to her occupational through b-3 when school started and it was finally to the point where she was not crying at all.
But for now we are just on the list. She is getting PT 2 twice a week, one through the hospital in my town and 1 through pediatrics over an hour away.