Hi,
I'm won't usually be on during the weekend and the kids were off school yesterday.
Wow, 3yrs, the poor wee thing. Is she ok now? You are a super-star my lady! Are you alone during all of this or do you have any help-nurses, Regional Center?
When do they start Kindergarten there? Here(CA) I have recently found out (too late of course) they have the option of holding kids back until they are six and letting them stay in preschool since so many of them these days do a lot of "K" stuff. Do they have the same quality of OT, PT, & Speech in the school districts (K & up) there as they do prior to school years? Here they definitely DON"T. You get into the IEP's and the school districts talk about the "overloads" of their kids they have to service, and services seem to take forever or are not very good. The worst we've come across is the speech services. We even had my 8yr old daughter (she has speech too) come home one day and tell us they watched a movie in speech. I was shocked. She told me her speech teacher told them it had "speech" in it!!
Don't you just love when the dr's tell you your child won't be able to do this that or the next thing. I wonder if they go home eat night with a clear conscience? Probably. I am so happy that Dakota is able to cut, draw and open doors. These things seem so small to some parents, but we feel they are huge achievements. Aodan is only now starting to use a fork about 75% of the time. I think he still finds it easier to just use his fingers, but knows how much John and I want him to use a fork. Knives are still way out of the question. He thinks they're Star Wars sabers-"I think NOT"! LOL
Aodan used to use both hands, but over the years school has emphasized the righthandedness. His grip is ok, but he has small hands for his age too-actually he's very small generally-but with his hypotonia and double joints his writing is not good. The double joints are from his dad-lots of fun at parties (in your 20's) but not with hypotonia.
Does Dakota have an Endocrynologist? I've read these studies recently saying they've found possible problems(?) with the pituitary glands that can cause Dwarfism. With all the other things Depakote causes its just one more thing to add to the pot.
My main question however is...
If mouse studies don't justify problems with meds how can they justify FDA approval as safe.
Dakota had her feeding tube out last June and is doing great! She has gained 5 lbs since she stopped using the feeding tube, (they wanted her to gain weight and eat a before they took it out.) but had a OT who specialized in feedings. It took almost 3 yrs for Dakota to eat steadily but she did gain weight at a faster rate than before.
I had a lot of help from my husband and very lucky to find a babysitter at our church who had sat with another girl who also had a feeding tube so we didn't need to teach her how to feed her when she watched our girls.
My sister and my mom were a great resource too as they are both nurses and could translate the medical terminology that was used.
Dakota was also very anemic for about a year since the day she was born. She had to have light therapy for jaundice, (which isn't out of the ordinary for preemies/under weight babies,) and had low iron and had to have a blood transfusion at 5 wks.
She had a PDA (hole in her heart when she was born, again not uncommon for preemies/low birthweight babies,) and that was repaired at 2 1/2 weeks.
Kindergarten here starts at 5 but Dakota has a Sept bday so she will go another year in pre-school. Here they have a developmental pre-school through the school system and she has been there for two yrs now. She's had a HUGE improvement because of the peer interaction too. Everyone in my family, (extended family) could tell a big difference in her development after she started developmental pre-k. She knows and recognizes questions and will answer back appropratly.
We haven't been told about what an endocrinoligist could do for her but I will be taking her in to the ped today, (she's sick with a fever and possibly croup)
Does Aodan have a service co-ordinator? Dakota does and she has been a lifesaver! She gets things scheduled, IEP's, documentations, therapies, and makes sure that we are not overwhelmed by this.
Med labratory trials are something that I hate almost anything w/ being compared to a drug that is safe during pgncy. A lot of drugs are categorized in a class, such as class A, B, C or D and so on, when regarding what is safe during pgncy. I believe Depakote is a class D drug which means it has not been tested on preg. women with epilepsy, or hasn't had enough studies with it because it is considered 'rare' (1 in 250,000 babies are born w/ FACs to women with E.) but is not necessicarily tested for depakote. All AED's are tested and most pg mothers with E take multiple AED drugs so it isn't certain that Depakote is the main cause of FACS, but is obvious, just not obvious enough.
I really hate it when dr's tell me that kids with FACS will have a hard time doing things or won't be able to do them at all.
Dakota had a walker for about a year before she got her braces. Her PT and the orthitist both told me that rome wasn't built in a day so don't expect a miricle right away, it would prob take 4 or 5 mos before she is walking on her own.
dakota proved them both wrong and was walking by herself, w/out her walker TWO days after she got the braces! I called her orthitist and she let out a HUGE shout when I was on the phone with her. Her PT even took video of her walking a week after she got her braces.
I was crying tears of joy for weeks after she started to walk because she did it all on her own because of her strong will and determination.
I don't expect Dakota to be potty trained anytime soon, she has had only a few sucesses after a year but I could prob count those on two hands.
Dakota also has the giggles all the time and it is such a joy to hear her happiness and see those around her when she giggles. She fills the room with laughter and it makes my heart happy.
