Developmental Delays

Hi and thanks for the roll call!!
I am Clara-Leigh, mom to Addie who is 8 and is low tone possibly mitochondrial disease, Ainslee who turns 7 TOMORROW, and Garrett who is 4 with suspected mitochonrial disease.

Wow, this is such a great time of year in Louisiana as it USUALLY FINALLY cools off some....still waiting!!! We do enjoy some Halloween festivities. We live on about 3 acres and are across from and adjacent to two traditional subdivisions. We hook our little bumper pull trailer to our tractor, load hay on it, call friends and family and do a hayride through the neighborhoods and the kiddos trick or treat from the trailer!! It's tons of fun!!

This month we meet the mito doc Dr. K in Houston for the first time. We are hoping for answers. I will be taking just Garrett this first visit.

Hope you all are enjoying your precious young ones!!

Clara-Leigh

Garrett, 4 years old, mild congenital myopathy,possibly MITO so hypotonia, g-tube from December 06-Fall 07, constipation, gross motor and speech delay, heart PDA repaired by hearth cath. Winter 08. OT once monthly, PT two times weekly, Speech 3 times weekly, water therapy weekly and as many horseback rides as we can fit in at home! Addie, 8 years old, mild congenital myopathy, possibly MITO. Low tone, tires easily, poor endurance. PT weekly, regular swimming and rides horses 3-4 days per week and competes in barrel racing and other timed events. Ainslee, 6, just about too normal some days, but really patient with all of her siblings' therapies!! Oh, CONSTIPATION...how can one forget that???

Hi Everyone!

My youngest daughter Sarah, almost 2 1/2, brings me here. What are we working on? Sigh......Everything. To quote my 6 yr old's bedtime prayer tonite, "and make Sarah stronger so she can get on her knees and crawl and walk and stuff." So...we are working on all the "stuff". She is sitting for longer periods and rolling and pulling herself around on the floor (army like crawl). She doesn't like her stander much anymore and her AFO's are getting too small. She has been really picky about eating lately. She won't eat any fruits or vegetables unless they are hidden in something. She harldy eats when she does eat. I supplement with pediasure at each meal (half pediasure and half milk). I know toddlers get picky but this is not normal. No words yet. We start speech tomorrow and plan on going 3 times a month. Genetics visit in November. I am feeling less depressed about Sarah's development....although it probably doesn't sound like it, does it!:) I guess what I mean is that I am realizing it doesn't all depend on me whether she ever talks or walks or whatever. I can't do therapy all the time. I can't fix her. She is who she is and will do what she is supposed to when she is supposed to. We just keep praying and enjoying each day. I love fall! It is too short though! The colors are amazing and remind me how awesome God is. We don't do Halloween but go bowling or do something fun with the kids as a family.

Katy   Blessed mom of 6 girls, youngest Sarah born May '07 with hypotonia, vertical nystagmus, developmental delays

I'm Jill, mommy to 4 year old Millie (typical) and 22 month old Oliver, who has hypotonia and is globally delayed.

We've had a good month with Oliver, as he just seemed to get this burst of strength and can now push himself up into a sitting position!  And now that he can do it, he does it all the time, and gets better everyday :)
He's got AFOs now too, and it seems between those and the use of his stander, he finally feels comfortable putting weight on his legs.
Still have no words or babbling though, or seemingly no understanding of what we're saying to him.  And that's very hard for me.....I'm really praying for some sort of spark to ignite in that little brain of his.

We do celebrate Halloween, but nothing major.  Millie is a bumblebee this year, and either dh or I will take her around the block trick or treating.  I bought Oliver a dragon costume, but that's really for me, so I can dress him up and take a pic LOL!!!  And then we hand out candy....last year we got about 25 kids to our door.

Jan here, Mama to Matthew who is 10.

Matthew is working on language, language, language.  He has 2 really good ST's right now.  One is PROMPT trained and they both are very good with apraxic kids.  We have put the AAC device away for now. 

I am working on putting shorts away and pulling out sweatshirts and starting my Christmas gifts (I'm a knitter, never get them all done).

I usually love the fall weather but we have a had a lot of rain and wind.  Matthew is going to be Spock for halloween.  I've never watched Star Trek but hubby is a huge fan so he didn't even balk at the costume price.

We live in a huge sub and usually get 100+ kids to our door.