Post your childs diagnosis!! - Page 23 - Mothering Forums

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Old 04-07-2009, 08:05 AM
 
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I haven't been online in a very long time. Hello. :

My ID twin sons were born in December of 2006 at 27 weeks. Noel was 1 lb 13 ounces and Simon 1 lb 3 ounces.

Noel was the "ideal" preemie. After a 3 month NICU stay, he came home with virtually no health issues at 4 lbs 16 ounces & 17 inches. At 28 months, he is now 29 pounds and 35 inches. He's BIGGER than average for his adjusted age and right on target for his birth age! : He does require corrective lenses for his vision and was outfitted with glasses just after he turned two.

Simon, however, struggled. He was the smaller twin and required a much longer NICU stay. He came home at 4 pounds 13 ounces and 18 inches, and he is now 22 pounds and 30 inches tall. Simon is our brave, strong boy. What he lacks in size, he makes up for in will to live, sweetness, and bravery, that's for sure. At one week he was diagnosed with hypoplastic left heart syndrome and at four weeks he had his first surgery. He has had three surgeries for his heart, and he is doing well now. He is on a list for a transplant. His other health issues include being NPO and on a feeding tube, requiring oxygen approximately 75 percent of the time, and showing significant delays in speech and gross motor skill development. However: he walks. He can even run, although it makes him unable to breath. He says a handful of words (Mom, dad, dodo (sister), Noo (Noel)). He laughs, he chats, he plays. Most importantly, he and his brother are ALIVE. :::

We also have two daughters who are not SN. Juliet is almost 9 and Elisabeth was born ON HER DUE DATE in July 08. I am 23 weeks pregnant with our 3rd daughter. My partner always says we have better luck with girls.
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Old 04-08-2009, 09:49 PM
 
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Hi Rebecca! My dd has a Chiari 1 malformation with syringomyelia (along with heterotopia but they are seemingly unrelated?). I was wondering if your children have any side effects from this yet. I was told to expect possible migranes in her ten years onward. Also if your children have had additional MRI's to track the syringomyelia (if it gets bigger or smaller)?

Welcome!
Thanks so much for the warm welcome!

My daughter does have headaches and a host of other symptoms. She had the decompression surgery in Oct of 2007, and was good for about six months after that. Now, she is not doing very well. She has had MRI's at her post op visits, and they have shown that the syrinx have not gotten larger or smaller.

Your child's Heterotopia could be related depending on what is displaced? Does she have Cerebellar Heterotopia? That could be associated with Chiari.

Blessings,
Rebecca
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Old 04-12-2009, 03:32 AM
 
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Young wife, it'll be better if you
consult your child's doctor. Because
doctor's knows more about the
case of your child.
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Old 04-12-2009, 04:38 AM
 
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hungry - I'm not sure why you are spamming mdc with hydrocephalus info. I'm trying to hold out hope that you are sincerely interested in joining in the forum, but I must admit I find your entrance here suspicious.

As to youngwife's question here you will find (if you actually stay here and post) that parents here and at other special needs boards honestly frequently ask questions of other parents and it's important that we do. First, it gives us peace of mind that someone else has btdt and second doctors are not gods and doctors can screw up. It is our responsibility as parents of children with special needs to learn about their condition and ask lots of questions to make sure our children are getting the best care possible. I feel certain the Youngwife has been discussing her daughter's condition with her doctors.
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Old 04-12-2009, 11:53 AM
 
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My granddaughter was just diagnosed with GSD1a she is 6 months old, may I ask you some questions about your son.
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Old 04-12-2009, 01:03 PM
 
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My granddaughter was just diagnosed with GSD1a she is 6 months old, may I ask you some questions about your son.

I suggest you post a separate thread with this question. This thread doesn't always get checked as often. You'll probably get some answers faster with a separate thread. Welcome to MDC.
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Old 04-15-2009, 12:18 AM
 
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Hi there-
I just joined. My daughter, Charlotte, is 10 months old. She had a true knot in her umbilical cord and a substantial brain injury at birth. She is developmentally delayed, but her most pressing issue is feeding. She has never been able to breastfeed , but I'm still pumping and she is still g-tube free at this point (though it often comes up in discussions). She's 50th percentile in height, 25th in head circumference and <3rd in weight.
She eats from the bottle cup and spoon. I'm really interested in finding some healthy high calorie foods that she'll tolerate.
Thanks-
Rachel

Mom to DD1 (Feb 2006) and DD2 (June 2008) with HIE, CP, dev delays and reflux
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Old 04-18-2009, 04:17 PM
 
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We have 5 dc.

Our almost 3 year old son has Human Growth Hormone Deficiency, and SPD.
He has vocabulary of about 12 words, and has a fairly hard time functioning at age lvl. Autism spectrum has been ruled out because he responds appropriately to social interaction, it is his interaction with the physical world that gives him a hard time. Recently the PT evaluated him and has started the paper work for him to get AFO's. We hope that it will help him get around easier as of now he can not walk/run more than 5-10 feet without falling and can not jump. Our son is one of the sweetest boys you will ever meet and is constantly finding ways to make you smile. He is special in every way and I feel blessed to have been given him to take care of.

Loved wife to JT and grateful mother to M (dd age 13) L (dd age 10) T (ds age 6) A (ds age 4) E (dd age 2) and C & S (twin boys born 10/13/10)
and yes, I blog. thumb.gif
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Old 04-18-2009, 11:21 PM
 
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Originally Posted by SashaBreeze View Post
We have 5 dc.

Our almost 3 year old son has Human Growth Hormone Deficiency, and SPD.
He has vocabulary of about 12 words, and has a fairly hard time functioning at age lvl. Autism spectrum has been ruled out because he responds appropriately to social interaction, it is his interaction with the physical world that gives him a hard time. Recently the PT evaluated him and has started the paper work for him to have braces for his legs. We hope that it will help him get around easier as of now he can not walk/run more than 5-10 feet without falling and can not jump. Our son is one of the sweetest boys you will ever meet and is constantly finding ways to make you smile. He is special in every way and I feel blessed to have been given him to take care of.
He sounds like our older boy -- who is 4 months past 3 now -- and we are just now offically having him assessed for SPD

Aimee + Scott = Theodore Roosevelt (11/05) and 23 months later Charles Abraham (10/07)....praying for a little sister; the search starts May 2014
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Old 04-21-2009, 11:07 PM
 
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Hi All,


I just decided to come back to posting as we are also TTC again (our family thinks we're insane). Our 4.5 year old (where did time go?) has been diagnosed with impulse control-intermintent explosive disorder, anxiety/depression, delayed social/emotional development, definately some ODD (undiagnosed), and ADHD.


Unfortunately, with DS's violence, he had to be medicated for this. But, he is a happier child for it. We are calling a therapist tomorrow, as he is still lagging behim socially (about 2.5yo), and I think that he needs both a psychiatrist and a therapist. His IQ is amazing, but we just cannot control our seperation anxiety enough yet. It's nice to meet all of you and your families!

Head covering Pagan-Quaker mama to 6yo DS, and DH. Recent WAHM www.napleshealthadvisers.com
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Old 04-24-2009, 10:07 PM
 
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Welcome to the SN board.
Please feel free to open a new thread on this board if you have questions or you need to vent.

Normal is just a setting on your dryer.
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Old 04-25-2009, 04:12 PM
 
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Hello all. My son was born with Tetralogy of Fallot. After spending the first 4 weeks of his life in a hospital and undergoing a heart surgery at only one week old I am looking for moms who have gone through this before that I can go to for support. It was a very hard first month and we are glad to be home. However like I said I would love to talk to other moms who have gone through this before seeing as how my journey has only begun.
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Old 04-25-2009, 06:14 PM
 
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A big to all of you newcomers!! I hope that you'll find this place to be as supportive, nurturing, and just downright wonderful as I have. I encourage you to post new threads in the regular forums to introduce yourself and target other moms with experiences like yours.




Quote:
Originally Posted by s+cmom View Post
Hi there-
I just joined. My daughter, Charlotte, is 10 months old. She had a true knot in her umbilical cord and a substantial brain injury at birth. She is developmentally delayed, but her most pressing issue is feeding. She has never been able to breastfeed , but I'm still pumping and she is still g-tube free at this point (though it often comes up in discussions). She's 50th percentile in height, 25th in head circumference and <3rd in weight.
She eats from the bottle cup and spoon. I'm really interested in finding some healthy high calorie foods that she'll tolerate.
Thanks-
Rachel
There are quite a few moms on here with children who have feeding issues. I'm one of them, though my dd does have a g-tube. You might want to also post in Health and Healing for some high-calorie suggestions.

Quote:
Originally Posted by bmire18 View Post
Hello all. My son was born with Tetralogy of Fallot. After spending the first 4 weeks of his life in a hospital and undergoing a heart surgery at only one week old I am looking for moms who have gone through this before that I can go to for support. It was a very hard first month and we are glad to be home. However like I said I would love to talk to other moms who have gone through this before seeing as how my journey has only begun.
No experience with T.F., but wanted to say welcome and, again, encourage you to start a thread in the main forum, so other moms can find you more easily!


Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-25-2009, 06:20 PM
 
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I have an 8 yr old son with Asperger's- lots of OCD/tics/pragmatics issues/sensory issues/ODD/behavior issues, and a 5 yr old dd who is an ECMO survivor with (undiagnosed) SID and PTSD.
My oldest daughter (Almost 10) was recently diagnosed with ODD and Manipulative behavior.

Mom of two, torn apart
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Old 04-25-2009, 06:49 PM
 
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My oldest daughter (Almost 10) was recently diagnosed with ODD and Manipulative behavior.


I hope you find some good support here!

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-26-2009, 04:49 PM
 
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I've been posting here and there, and reading the SN forum for a while now. I've just been waiting for the evaluation before posting my son's diagnosis here.
DS1 has SPD (primarily sensory-seeking with auditory defensiveness) and has been diagnosed with high-functioning autism, though Asperger's is probably more accurate (it fits except for the language loss he had between ages 1 and 2). We mostly struggle with his sensory issues, meltdowns, and oppositional behaviors. He struggles with social behaviors, anxiety, and obsessive thoughts. We're trying to navigate through all this.

You can find me on Facebook. PM for info.
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Old 04-28-2009, 01:54 AM
 
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welcome debi!

Mama to Jet 6/05, Marvel 8/06 and Cash and Fox 2/09
Expecting Ada Marianne 11/14
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Old 04-28-2009, 09:50 AM
 
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I had started a new thread to introduce myself but I'll join everyone here with a dx post.

I have 3 daughters. Oldest has ADHD w/impulsivity, legally blind right eye, asthma, chronic headaches.

Middle daughter has legally blind right eye, chronic joint pain, spondylolisthesis L5-S1, scoliosis, multiple fracture history, shingles 2x, chronic abdominal pain.

Youngest daughter has cricopharyngeal acalasia, dysphagia, hypercalcemia, borderline for von wilibrands (bleeding/healing issues), possible connective tissue disorder/elhers danlos (genetics hasn't completely decided...high arched palate, 6/9 beighton scale, subluxing thumb, hypermobility), legally blind right eye, numerous food sensitivities, chronic yeast issues, oral sensory issues, GERD, and FTT. She is finally catching up on weight. She was 9lbs at birth, 15lbs at 1 year, 20 lbs at 2 years and she is currently 27 lbs at 3 years.
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Old 04-28-2009, 10:01 AM
 
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Wow, you've got your hands full, don't you? Well, welcome to our little tribe. I hope you enjoy and benefit from your time here!

Wendy

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Originally Posted by mandcc96 View Post
I had started a new thread to introduce myself but I'll join everyone here with a dx post.

I have 3 daughters. Oldest has ADHD w/impulsivity, legally blind right eye, asthma, chronic headaches.

Middle daughter has legally blind right eye, chronic joint pain, spondylolisthesis L5-S1, scoliosis, multiple fracture history, shingles 2x, chronic abdominal pain.

Youngest daughter has cricopharyngeal acalasia, dysphagia, hypercalcemia, borderline for von wilibrands (bleeding/healing issues), possible connective tissue disorder/elhers danlos (genetics hasn't completely decided...high arched palate, 6/9 beighton scale, subluxing thumb, hypermobility), legally blind right eye, numerous food sensitivities, chronic yeast issues, oral sensory issues, GERD, and FTT. She is finally catching up on weight. She was 9lbs at birth, 15lbs at 1 year, 20 lbs at 2 years and she is currently 27 lbs at 3 years.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-28-2009, 11:36 AM
 
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My youngest son, Gabriel has Dystonic Quadriplegic Cerebral Palsy. He is exclusively G-tube fed, except for little "tastes" of food here and there, is on 4 different meds three times daily, and needs nebulizer treatments on a daily basis. He can not sit up/crawl/walk etc, and has very little neck control. We use a Kid Kart for mobility. We have been kept busy with in home therapy up until this month, when Gabe turned three. He just started an introduction to Pre-school (right before they are done for the year, lol) and will receive PT/OT/Speech there.

We also have a seven year old, and five year old. Both have been through the birth to three program for speech. Our oldest is now struggling with reading/spelling, and the teacher has already implied taking him to the doctor for "meds" as his focus/attention is sometimes lacking.

I'm also expecting-our last child, as I think we will definitely have our hands full by then. I am due in August, and have had a pretty anxiety filled pregnancy so far, due to the traumatic delivery of Gabriel. My OB says I am going through PTSD...everything is going okay so far, it's just my own worries/anxiety that is an issue now. The chance of another abruption happening is 30% apparently, so my doctor is being really wonderful and trying to help keep me calm. She is having me come in every two weeks already, as she said my anxiety is only going to get worse as time goes on.
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Old 04-28-2009, 12:17 PM
 
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My youngest son, Gabriel has Dystonic Quadriplegic Cerebral Palsy. He is exclusively G-tube fed, except for little "tastes" of food here and there, is on 4 different meds three times daily, and needs nebulizer treatments on a daily basis. He can not sit up/crawl/walk etc, and has very little neck control. We use a Kid Kart for mobility. We have been kept busy with in home therapy up until this month, when Gabe turned three. He just started an introduction to Pre-school (right before they are done for the year, lol) and will receive PT/OT/Speech there.

We also have a seven year old, and five year old. Both have been through the birth to three program for speech. Our oldest is now struggling with reading/spelling, and the teacher has already implied taking him to the doctor for "meds" as his focus/attention is sometimes lacking.

I'm also expecting-our last child, as I think we will definitely have our hands full by then. I am due in August, and have had a pretty anxiety filled pregnancy so far, due to the traumatic delivery of Gabriel. My OB says I am going through PTSD...everything is going okay so far, it's just my own worries/anxiety that is an issue now. The chance of another abruption happening is 30% apparently, so my doctor is being really wonderful and trying to help keep me calm. She is having me come in every two weeks already, as she said my anxiety is only going to get worse as time goes on.
Congratulations on your pregnancy. It's hard to enjoy the miracle of a new life when there is so much stress from it. I had a lot of anxiety with my last (preterm labor at 19 weeks) and lots of bedrest with a difficult birth so I feel for you. It's very difficult to deal with a stressful pregnancy with children who don't have tons of medical issues never mind ones that do. Lots of warm wishes to your family.
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Old 04-28-2009, 01:08 PM
 
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Congratulations on your pregnancy. It's hard to enjoy the miracle of a new life when there is so much stress from it. I had a lot of anxiety with my last (preterm labor at 19 weeks) and lots of bedrest with a difficult birth so I feel for you. It's very difficult to deal with a stressful pregnancy with children who don't have tons of medical issues never mind ones that do. Lots of warm wishes to your family.
Thank you,
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Old 04-28-2009, 08:43 PM
 
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A warm welcome to all the new parents.

WindmillSong - You have your hands full mama. Congratulations on the new baby!
When my I was pregnant with DD we discovered through a routine ultrasound that she had a problem with her umbilical cord and that she was at a higher risk for stillbirth compared to kids without such an umbilical cord. The problem wasn't genetic. It was just one of those flukes that happen for whatever reason. The whole rest of the pregnancy after that 20 week ultrasound was very very stressful. I don't really have any words of wisdom but I can commiserate with some of what you're feeling. I'm glad you stumbled upon this board on MDC. It's a positive and supportive place for many of us. See you around.

Normal is just a setting on your dryer.
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Old 04-28-2009, 08:52 PM
 
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A warm welcome to all the new parents.

WindmillSong - You have your hands full mama. Congratulations on the new baby!
When my I was pregnant with DD we discovered through a routine ultrasound that she had a problem with her umbilical cord and that she was at a higher risk for stillbirth compared to kids without such an umbilical cord. The problem wasn't genetic. It was just one of those flukes that happen for whatever reason. The whole rest of the pregnancy after that 20 week ultrasound was very very stressful. I don't really have any words of wisdom but I can commiserate with some of what you're feeling. I'm glad you stumbled upon this board on MDC. It's a positive and supportive place for many of us. See you around.
BookGoddess, thank you. I bet that made for a long, long second half of pregnancy. With this pregnancy, I haven't gotten too excited, and I've been pretty reserved as far as telling people-almost like I'm expecting that something *will* happen. I am now at 25 weeks, and I remember being so nervous, and just waiting for the "viable" time of 24 weeks, to come. Now, it's each week that passes, and the baby is growing, that I feel better with. Of course, if an abruption starts happening, now I will worry if I can get to the hospital in time, as far as someone watching the boys, and that the baby will make it out in time. I've also been reading other issues, kind of like with your baby and the cord problem...that makes me worry too. I never would have thought of things like that before.
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Old 05-10-2009, 11:39 PM
 
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Oy, had to step away for a few months due to just the daily stress of keeping up with the boys, a failing relationship and work! But, in the intrim we've managed to get Tay's current diagnosis as well as a (VERY unexpected) diagnosis for the little one.

Taylor was, as suspected he would be, diagnosed with moderate functioning autism. We moved on pretty quick, finally got him in preschool after a wonderful wait for the school district to catch up to him. He's doing co therapy ST/OT every other week - I wish we could do more but right now we're limited to what the insurance will cover. Currently working as best we can with the county board of MRDD to cover the best summer program we can because the school has completely shot down ever attempt to even consider ESY services because he started school so late in the year and there is no evidence to support the potential regression or that he will not be able to achieve his IEP goals without the summer program. You know, because it's his fault the first evaluation was in November and it took until the end of January to have an IEP meeting and until the first week of March for them to let him start. Bah.

Of course, in that time my youngest son was diagnosed as failure to thrive because he has the exact same growth pattern his brother did - 1st percentile represent. Apparently being on a steady growth pattern with no loss of weight - just slow physical growth constitutes as FTT when it did not 3 years ago. But, the good news is we were able to do what we didn't have the foresight to do with Tay and got him into EI. So far he is progressing right along the average to advanced mark in everything but growth - and I'm totally happy with that.

So.. uh, yea. Fun times!
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Old 05-11-2009, 05:41 PM
 
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Welcome to the SN board, mama.
It's awesome your youngest son is making such good progress. That's so wonderful that he's advanced in some areas.
Could you take an advocate with you to your IEP meeting to help you get more services for Taylor? Local disability groups and your local ARC organization should have advocates who can help you and/or come with you to an IEP meeting. I'm of course assuming you haven't done this already.
It's very frustrating isn't it to get services that we need for our children. I wish getting the therapies we need for our children wasn't such an uphill battle.

Normal is just a setting on your dryer.
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Old 05-11-2009, 06:57 PM
 
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Welcome to the Special Needs Parenting Forum!! It's nice to see new faces...errr...names. There are some absolutely wonderful parents here. So don't be afraid to ask for advice, share your stories, truimphs and frustrations.

 
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Old 05-13-2009, 06:28 PM
 
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Hello everyone. My husband and I have five children, and our second youngest DD (who will be 3 in June) is special needs. She has Septo-Optic Dysplasia, Hypothalamic dysfunction, Epilepsy, paroxysmal sympathetic storms and global developmental delays. She is legally blind, doesn' walk or talk (yet), and is the happiest girl I know. Everyone who knows her, loves her.
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Old 05-13-2009, 07:07 PM
 
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welcome megan!

Mama to Jet 6/05, Marvel 8/06 and Cash and Fox 2/09
Expecting Ada Marianne 11/14
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Old 05-13-2009, 07:51 PM
 
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Originally Posted by meganmommyof5 View Post
Hello everyone. My husband and I have five children, and our second youngest DD (who will be 3 in June) is special needs. She has Septo-Optic Dysplasia, Hypothalamic dysfunction, Epilepsy, paroxysmal sympathetic storms and global developmental delays. She is legally blind, doesn' walk or talk (yet), and is the happiest girl I know. Everyone who knows her, loves her.
I don't even know what most of those things are, but I love the happy part . Welcome!

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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