Tell me about yourselves!

MrsM507 · September 2012

I'm new here and have been looking through to find other intro's to try to learn about everyone! I figured it would be easier to just make a post! I would love to hear... so feel free to post.

*my intro post is still pretty close by, or my bio gives some details as well. To sum it up, DD is 5 years old - dx: CP, GERD w/aspiration, Gtube fed, Hydrocephalus (shunted), non-verbal, non-mobile and on and on...*

RevivingOphelia · September 2012

Welcome! I tend to lurk more than post, but thought I'd introduce myself anyway,

I'm the momma of a 20 month old that was born with sagittal craniosynostosis (his metopic suture also fused, but it was right before surgery). He had surgery July 2010 to correct it. He then had helmet therapy for 3ish months to finish the process.
We are also suspecting expressive speech delay. We go for our assessment on Oct 5th (it takes forever to get in!! We booked in June).

I'm also pregnant with my 2nd, due any time now! We're fingers crossed this baby doesn't have cranio. The surgeon said ours wasn't genetic, but DH & I didn't get the testing done. So it's been in the back of my mind. Especially the other day when I was putting the baby's hats away and thinking how I hope all of them fit this one's head, unlike Nate's.

realisticdreams · September 2012

Most of us is in our siggy, except that #1 was a clomid baby (days 3-7 did the trick..I noticed your siggy). We would not of had any more biological children but the same week we found out P had a stroke before she was born and got her CP diagnosis, I also found out I was pregnant. Pregnancy #2 was more complicated than #1..but alas here we are. They are 15 1/2 months apart (#2 was born early though). I basically stay at home since they have a ton of appointments and it was impossible to work most weeks, I do work 1 day a month to keep my license, etc.

His(1&only)wife · September 2012

My son is 3.5 and has a diagnosis of Autism, severe OCD, SPD and most likely will be getting a dx of ADHD in the next couple years. We are currently in the midst of trying to find a medicine that helps his OCD without making his hyperactivity insane. I am a SAHM and spend my days taking him to therapies, doctors appointments, SN preschool, and other activities.

houndbaby · September 2012

My 3.5 year old has ASD, my 20 mo. old had torticollis as an infant but otherwise appears to be typical at this point

goldenleaves · September 2012

Hi! I'm a working mom, I'm a nurse and work midnights so I can take Lauren to her therapy appointments and doctors appointments.

Lauren has Down syndrome and had a complete AV canal repaired during open heart surgery at 6 weeks old. She has a helmet for plagiocephaly.

Our son Ryan is typical but also had a helmet for plagiocephaly!

CrazeyJaneyR · September 2012

HI! I have 3 kiddos. My daughter is 4 - she is NT. She was my 5th pregnancy and took 7 IUI cycles. Then when she was 8 months old I got pregnant spontaneously with identical twin boys. The boys were born healthy and were 1 month early with only 2 weeks nicu time. They are 2.5 and both have autism.

Soapstone · September 2012

I am a SAHM to an almost two year old girl. She is deaf but has been hearing for 10 months with cochlear implants. She also has some balance issues and was in PT for a few months. She amazes me everyday!

lite-bright · September 2012

Hi!

My DD1 (4) has autism. My DD2 (2) is NT. I've been a SAHM for more than four years, and just started working PT from home. I do writing and reporting.

DD1 just started her second year of preschool, and we're definitely in a big transition right now as we adjust to a completely new schedule, having a regular babysitter for the first time, and having me be busy with work in the mornings.

gimmietimmies · September 2012

Hi and welcome! WM here to the brood in my siggy. L was diagnosed with athsma at 9 months. It lead into some very odd medical situations, and a major episode rhabdomyolysis at 18 m following the (actual) flu. He has had multiple major and minor episodes since then, with no conclusive dx (2 that came close were polymyositis and CPT type II). He went into kidney failure (only verified last year) due to the rhabdo at age 2 1/2, and was on dialysis until just before his 5th birthday. He was transplanted then, still has his kidney. Throw in hydrocephalus, with a ventriculostomy three weeks after transplant. And a dx of dyslexia. And more than 100 surgeries.

The girls are pretty much nt. T was dx'd selective mutism, but she's doing well in school and coming out of her shell. K is being tested for hearing loss this fall, I would be surprised if they don't find something. E is just loud and boisterous. S is adventerous.

Assembly_Reqd · September 2012

Me and DH are 41. I am a SAHM who works on an as-needed basis part time in the afternoons as an Architect.

Nate was conceived spontaneously while on a TTC break after a couple of IUI's (clomid, femara) and a cancelled injectables cycle due to MFI before pursuing IVF, hence the screen name, Assembly Req'd I am glad we didn't have to pay for IVF. I would have been super-pissed paying 25 grand for this outcome... Surprise

He has complex intersitial microdeletions on the p arm of Chromosome 1 that have caused multiple conditions. Brain abnormaliites are Hypoplasia of the Corpus Callosum, slight Hypoplasia of the Cerebellar Vermis and sensorineural mild-moderate hearing loss. They are the "big players". Nystagmus, poor blink and ocular hypertension are the folks in the back of the pack. He is developmentally delayed and apraxic. Lucky for us, he can attand Maryland School for the Deaf in the mornings which helps out immensly with the apraxia. No one cares there if you can't talk He has over 100 signs.

carlinlp · September 2012

I'm not here much anymore but thought I'd still post and say hello.

I have a 15 year old that is NT.

7 year old who was diagnosed with SPD and hypotonia. She's lost her SPD diagnosis this year, no longer needs OT, is still in PT.

4.5 year old who had a severe vaccine injury including viral vaccine induced demyelination and a long laundry list of other things. He's about 99 healed after 2 years of biomedical interventions. He's doing awesome right now as long as we keep up with everything. We don't know what will happen with him long term with a lot of things, but he's doing good at the moment.

I'm also pg with 4.

light52 · September 2012

DS1 has ADHD, ODD, speech and learning delays, and just recently was diagnosed with a hearing loss. We do speech, PT, OT and behavior therapy with him.

DS2 has minor issues due to being born early but with intervention he will outgrow them. He wears glasses for a lazy eye, is in PT for balance issues and in speech.

I'm a stay at home mom who is actually never home because I spend my days driving my kids to therapy and doctor's appointments. Baby #3 is on the way.

Amy and Jay · September 2012

I mostly lurk too but thought I would share my story...

I'm a 35 y.o. SAHM to 2 girls. DD1 is 3.5, has a speech delay and is on the wait list to be evaluated for SPD and ASD. We actually had her evaluated last year but they didn't think it was ASD at the time. Now that she's older, the gap seems wider between her and her peers so I want another eval.

DD2 is 1.5 and was born with 2 undiagnosed heart defects. VSD and Coarctation of the aortic valve. She had open-heart surgery at 9 days old to repair both and is now doing great and seemingly healthy and on-track with all milestones. :-)

d.f · September 2012

I'm a 32 year old SAHM.

My DS who turned 4 today was Dx with an ASD, specifically PDDNOS, in July. Even though we've known something was going on for about a year we're new to ASD and are still figuring it all out.

JenGK · September 2012

I'm 35, and an attorney at a big law firm. My boys are Zach (5) who has apraxia and is somewhere on or near the autism spectrum (the docs cannot agree) and Adam (2) who also has apraxia, but does not appear to be on the spectrum at this time. Zach just started kindie and is doing really well all-around -- he's made a lot of progress since we started therapy at 2. I also have an 11 y.o. SD who has ADHD.

ntyravgmom · September 2012

Hi! I have an 8 1/2 yr old (DS 1) who was diagnosed with an ASD at 2 1/2. He went through EI for 6 months, started at a special-needs pre-school after he turned 3 (due to the timing of his birthday being a holiday break.), and is now in a mainstream classroom with some helps. He was born with low fluid by c-section, was nonverbal until he was well into his 4th year, had mild toritcollis, had severe plagiocephaly and wore a helmet, suffered cradle cap,went through OT, PT, Speech, and behavior therapy in EI. Received speech, OT, and PT during the pre-school years, and still receives speech. He's come a very long way in a very short amount of time. He amazes me every day.

DS2 is 2yrs. and speech delayed. We're keeping an eye on him along with EI for ASD, but so far it doesn't look like he has it. We are thrilled that he appears NT. Again he was born by c-section. They took him earlier than scheduled because I had high bp and contracted Bell's Palsey. He, on the other hand, is very healthy.

Rose.9.6.03 · September 2012

I largely lurk because my DD doesn't have the day-to-day concerns that a lot of SN kids do. My DD has a yet to be diagnosed genetic disorder. We are in our third year of genetic testing without a definitive answer.

She has woolly hair nevus (she has half kinky-curly hair and half straight hair), epidermal nevus (a swirling pattern of hyper pigmentation on her skin with warty growths), and palmarplantar keratoderma (PPK) (red thickened skin on her palms). Her concerns are mostly cosmetic. However, she has a patch of the epidermal nevus that keeps getting infected, so she will have surgery 1 of 2 in November to begin excising that portion.

Because woolly hair and PPK is associated with the rare genetic disorder of Naxos disease, she is being treated as though she has it (it hasn't shown up in genetic testing - her geneticist thinks that is due to a mosiacism). Because Naxos disease involves the development of cardiomyopathy in adolescence, she receives yearly EKGs and cardiac MRIs to monitor her heart. So far her heart is totally normal (aside from a small VSD as an infant).

She also had torticollis and a facial palsy as an infant (both resolved) - so I will sometimes comment on those posts.

She is happy and healthy and just started kindergarten. She has a fraternal twin sister who has no known issues. I am a current SAHM (and former lawyer).

zoeyandsummersmom · September 2012

I am a working mom, but with a very flexible manager. My DD is 9 months old and was 5 weeks early. She suffered a brain bleed and stroke at birth. Both of which seem to have resolved, but she is severely failure to thrive and recently had a g-tube placed. She is developmentally behind, but part of that is due to being less than 12lbs.

S-Tuna · September 2012

I am a nanny of two and mama of one. DS is 13 months. He was born with an occipital encephalocele (removed at 4 months), agenesis of the corpus callosum, and holoprosencephaly. Big terms for brain abnormalities and a neural tube defect. DS also has a dysplastic kidney and a small ASD. Genetic testing found nothing. The geneticist said it was probably "spontaneous". So far, he is in PT twice a week for gross motor delay and low tone. He wears orthotics (sure-steps) to help with standing.

NannyKid1 is 9 and has mild Tourette's.

Nannykid2 is 5 and was born at 24 weeks 6 days. He wears glasses and has low muscle tone but is otherwise healthy and thriving.

macchiatto · September 2012

I have 3.5-year-old fraternal twin boys. One is typically developing (though he's dealt with a lot of food allergies, eczema and asthma); the other has dealt with hypotonia, some feeding and oral motor issues, delays in gross motor, fine motor/adaptive skills, moderate sensory issues (avoider), and his therapists, EI and teachers have also expressed some concerns about his anxiety, rigidity, attending issues, and his tendency to "zone out." He also had a random tonic-clonic seizure when he was 22m old. We are hopeful it was a one-time thing but his EEG was mildly abnormal and inconclusive. He's on the waiting list to see a developmental pediatrician that our pedi referred us to, but it's taking a long time to even hear back from them, so I'm not sure when we'll get in. Overall he's doing pretty well and has come a long way through his therapies; we're still trying to see what issues he may have long-term.

mommytoconnor · September 2012

I am an adoptive mom of my DS who just turned 2 yrs in June. I am a nurse and I work full time. My son has SPD and has been undergoing OT and ST for 15 weeks now. He has expressive and receptive speech delays at this time. He is signing a few words and has started saying a few words. First word he said was "cheese". Not "mama" as I was hoping, but I am thankful for any words he says. He is a challenge every day, but I love him more than I ever thought possible and he is doing great with his therapies.

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