Hi Lorraine,
I have been around a while and have watched you posts regarding Braden. I never realised he has so many things going on. You always seem to do a great job balancing everything.

I also did not realise that you were the one who requested this forum. I have 2 boys on the autistic spectrum. An 8 and a 7 year old. I am mostly on the main or veteran board but do check here often. I can ask questions and help when I can too!

I hope all is going well with your kids.

Have a good day!

Julie

Hi Lorraine~ I remember you and always read your posts to look for updates on Braden. You are one strong mom and Braden is one strong little boy!!

The special need in our family is one our triplets was born with split hand/split foot syndrome. Bascially, this means he was born with a "split" in both of his hands and both of his feet and is missing fingers and toes. He had PT and OT from the time he was 3 mos old and at some point (can't remember the age!) dropped PT and now only does OT. He's had a few surgeries on his hands in order to give him optimal use. Supposedly other things can be involved in this syndrome, teeth being one and we do think the lack of enamil (sp?), deep grooves, and odd shape of his teeth may be related to the syndrome.

If anyone reading this, knows of another child with this syndrome, can you PM me? We do not know any other children with this, and suprisingly so, neither do his therapists. He is just now getting to the age where kids are questioning his difference (which is fine, it is only natural to question) and I'd love for him to have someone he could "relate" too! Thanks!

~Amy

Amy
Mom to:
G 00
B 01
BBB 02

Unfortuntately, as of yesterday I could just claim Down Syndrome as my dd's special need. She had a sleep study done this summer and she is having 47 episodes per hour. Her pediatric pulmonologist refered us to a ped ENT and she needs further testing. Basically, I was told today that unless the testing indicates otherwise, these are our options: jaw/facial surgery to correct the position of her jaw or last resort a trach. for the rest of her life. According to her ped ENT and Pulm. Katie is the worst case they have both seen in their careers. Her ENT meets with the surgeon to discuss the facial surgery on Weds and we will go from there. If she needs the surgery, she will be in the ICU for up to a week, jaw wired shut, the whole nine yards. All I did was cry when I got into the parking ramp. If she has the facial/jaw surgery, it will change her appearance. I am still realing and cannot stop crying. Fortunately, the facility in which the surgery will be done is only about 2 hours away and my niece lives there. She is pre-med at the University and lives about 1/2 mile from Childrens.
Sorry to just babble, but dh isn't home yet and I haven't had the chance to let it out yet.

Gina
12yo G
9yo BGG

Hi. I am Katie and my GGG just turned 3 on the 15th of October. We didn't really have any medical or developmental issues until right around their 2nd birthday when 2 of the girls started exibiting "red flags" for autism. One dd now has a PDD-NOS diagnosis, she is doing ABA therapy and I think I am pretty much geared up to do the GFCF diet. The 2nd dd has a diagnosis of developmental delay and language disorder, but I am pretty sure she is probably on the spectrum too, just much more mildly than my other daughter, although her sensory issues are greater. She just started the special ed. preschool 4 days a week. Then their is my little baby C who is our fiesty typical dd who loves to boss us all around and who will be a great advocate for her sisters.

This special needs forum has been great and I have "met" some awesome outstanding moms through it. Thanks for all the support!

Katie

Katie

"

Hi Lorraine: I am the mother of 5, my oldest ds was diagnosed with SID and severe speech delays when he was 3 yrs old, he didn't talk at all until he was 4 1/2, but is now 16 and doing great, just learned how to drive and will be off to college in 2 yrs .
my 3 yr ds has Autism and my 2 yr dd (one of the trips)has "hemoplegic Cerebral Palsy" (her left side was paralysed but with lots of therapies she is doing great and couldn't be any cuter!) I am forever greatful about this site and to everyone who posts in here.. There are no words to describe how much help, hope and support I've gotten here and hope that I can be helpful to others.
Ivy

http://dn.daisypath.com/5b6Im

I have followed your posts for as long as I've been on the board (about 3 years) and have always been inspired by your strength and wisdom and the way you advocate for your children. Especially Braden.

My DD has Down syndrome and my boys both have Sensory issues (though lately, since they switched to the school district, they refuse to acknowledge this). All are doing very well, and I must admit, my boys' SI have gotten much better, though i do see some episodes daily, just not as intense.

My DD's biggest "goal" right now is with her speech and language, and I have also been placed on the board and helped to begin a DS Association in our county.

Thanks for the question, I've often wondered about others on the board.

Maryann
Mommy to
Malena, Joshua, and Jacob
born 12/20/03 @ 34w5d

Custom Cards
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Visit us at
www.kwiat3.blogspot.com

lorraine,
you are a legend around here!
Its great to see you posting agian. I was so grateful for you for starting this sp. needs board. i think its been a great place for us to ask specific questions and 'relate'.

One of our boys was diagnosed with autism just before age 2. He is now 5 years old and doing very well most of the time. we recently moved and this has been extremely hard on him, as is having NO therapy for the past 6 months (OUCH!!). This has been such a difficult time for him, but we are doing battle with the school district to provide therapy for him since he is going to a private pre-k program.

All of you moms are amazing with the challenges that you face everyday.

Meg

Lorraine~

I definately remember you and have wondered how you have been. I've posted to you in the past. I don't post much anymore...maybe once or twice on main forum in the last few months. I'm just busy and mostly post or answer pm's in the special needs area.

I have 3 y/o ggg. One dd has a brain cyst, and had pronated feet and rigid muscle tone, petit mal seizure like episodes (ruled out CP at 18 motnhs) and just finished 2 yrs of PT and is doing great now.

One dd has Sensory integration disorder (sensory avoider) and is doing well currently after many, many months of tantrums and separation anxiety disorder. We still have challenges with behavior but nothing like before. She finished OT in the summer.

My last dd also has Sensory Integration Disorder (both seeker and avoider), and after having a complete sensory crash between 15-18 months and a second round of OT for a year, she is doing better. But, she has daily challenges with her sensory disorder, social skills, etc. She is also the dd who had NEC--over 1/3 intestine removed, 1/2 of colon, no ileocecal valve, absorption issues, etc. She had an ostomy at 9 days old which was repaired at age 3 months along with a new bowel stricture. We avoided short gut but I have to stay on top of her diet and give her B-12 injections on a schedule now. You know the drill. She caught up developmentally with her physical age this past June when I had testing by the school system done. She has many traits of PDD, but the dev psychologist said I had pushed her so hard and done so many different interventions at such an early age that she is high functioning enough that she doesn't meet diagnostic criteria (that's both good and bad news).

I homeschool their preschool, and they go to a library group with a great teacher 3 days a week for interaction with other kids.

Glad to hear from you.....I keep you in my thoughts and prayers all the time.

Melissa

I am constantly on this board. I do not post often, but find great comfort and support in the members. My trio will be three in December. Two of them have a PDD diagnosis. My daughter has no speech at this point and is quite delayed. She has also been diagnosed with neurofibromatosis, which at this point is not causing any problems for her. My son has limited speech and communication and is quite challenging at times. They are all invovled in early intervention, ABA therapy etc... well, to sum it up, that is what brings us to this board. Thank you all.

Laura
BGB
12/3/04
32w2d

Hi All,

My 3 surviving also were all special needs. Emma (my sweet angel who is missed so very much) had many many problems at birth (weighing just 13.5 oz) She wasn't expected to live but proved those doctors wrong. She survived NEC & E-Coli when she had just made it to 1 lb, she was vented for months and had osteopenia and rickets and had all of her bones broken. She was in the NICU for 6 mos. She was legally blind but was diagnosed at 2 with pulmonary hypertension. She had a broviac (permenant iv) line in her chest where life sustaining meds we fed 24 hr/day. We had to mix new medicine every morning (sterile environment) same time and she had to wear a back pack and pump and ice packs to keep the medicine at 40 degrees. She also had a g-tube and nissen and was in heart failure. We were listed for a lung transplant but were unsure whether to do it or not (lung transplants don't have good statistics at all.) We never got the chance to decide. Sadly I thought she would pull through all of this. All of us did.

Anna has down syndrome. She had a 2-3 grade IVH but seems to have fully recovered from that. She had ROP & surgery like the other 2 and so far doesn't need glasses. She has no heart problems or other major medical conditions associated with down syndrome. She does have low muscle tone and has constant constipation for which she takes medicine daily.

John also had BPD and was vented for a few months. He had ROP and was in the worse 10% of cases. He had surgery and is now legally blind but has great (really great) functional vision. So much that you would never ever think he couldn't see well. He is behind a bit but figuring he was just 1lb 13 oz (our biggest) and had so many obstacles I think he's doing wonderfully.

We are 4 now and I am amazed every day how they grow and what they can do!

Jane
Anna/Emma/John/^James^ (9/24/03-9/29/03) 26 wkers
In memory of my beloved Emma 9/24/03 - 1/19/07
www.snanimals.com
www.jlperillo.etsy.com (my etsy shop)
http://snanimals.blogspot.com (my blog)

Thanks everyone for your responses. It's nice to hear more about your kids and to be back in touch with some of the other old timers here. I am amazed by all of you and all that you have accomplished for your kids. I have been seeing a therapist for a little while and she really has helped me to realize what an accomplishment it is just to get through the day sometimes. I met a woman at church yesterday -we were both donating blood- one of my favorite things to do- can you think of a better way to spend an hour or so than to save someones life ?!? and I was so impressed with her grace and gratitude for her special blessing child.
I have met so many brave and wise beyond their years kids on this journey- what a blessing to have so many inspirational people touch my life- something I never would have truly understood or appreciated without having struggled with special needs kids.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

I have joined this forum to seek and offer advice for children with Autism.

My Aidan was diagnosed as Autistic in April of 2005. Since then, I have come to this board for advice, to vent, to brag on his achievements and to offer any advice that I feel is concrete. Unfortunately, that is not much. I am still learning so much but hope to offer much more to new members in the future.

Bea
Mother to bbg (7/28/03)

Educate yourself on the growing number of children with Autism. Awareness Counts.

www.autismspeaks.org

I have been part of the triplet connection for many years, but haven't posted in a long time. I have 8 year old ggg. My Baby "A", Danielle, was born with Arthrogryposis which is a joint disease. She had contracted wrists and fingers, a dislocated hip, and clubbed feet. She has had several surgeries, I really lost count. Her latest procedure on Aug. 3 was a bilateral amputation of her feet. She just spent 4 weeks in the hospital for infection and wound issues. My Baby "B", Nicole, (identical with "A") has ADHD just like Daddy!! and is on meds. And Baby "C", Shannon, has Dyslexia. So life is always an adventure of stress and emotions, as you all can empathize with.

Laurel mom to Jimmy 11, Danielle (bi-Symes), Nicole (ADHD), and Shannon (Dyslexia) all 8 years old!!

www.caringbridge.com/visit/bella99

I have an autistic son, Kyle. He is doing great, but I need the support that comes from this board!

Hi I haven't posted in a while. All 3 of my trips are special needs. All have ADHD, one has OCD, one has Tourettes Syndrom and the other has autism, gluten intolerance (never had him tested for celiac) and oral and verbal apraxia.

I like reading the posts from time to time, for hope and support. I am a working single parent so time is precious to me. Keep up the good work everyone

Chris
bbb 6/2/00

Hi Lorraine,

It was nice to see your post and hear an update. My husband is the one doing a GI fellowship right now. I knew about liver transplants, however, had no idea that there are now intestinal transplants. Are you near a good pediatric transplant team?

Two of my three boys have fairly significant sensory processing issues. One is a seeker and the other is sensory avoidant. One of my sons has also been recently diagnosed with autism. We are in the process starting our local preschool program as well as starting an ABA program.

Laurie

BBB
2/20/04
34.6 weeks

I have BGGB quads born at 31 weeks 5 days. My daughter, Katie (also my surprise Quadruplet!), has a G tube. Luckily, she is doing very, very well and only requires the tube at night-12 hours while she sleeps. She has tracheamalacia, caused by a congenital heart defect "Double ARched Aorta" at birth. Again, luckily the defect was corrected and resolved. However, this defect did cause her tracheamalacia, basically she aspirates on thin liquids. We do feed her regularly during hte day, just no thin liquids. She eats just like the rest of them. (french toast, hot dogs, chicken nuggets, applesauce) We are hoping the G tube will come out sooner than later.
Also, my son, Matthew, had NEC in the NICU, treated with antibiotics. However, he did require surgery in April, to take out about 10 inches of his bowel. He has had some problems gaining weight, and he is still my "peanut" of the group. We are working withthe GI doc and NUtritionist to help him gain weight.

We do have EI come out 1x/mo for Katie just to track her progress, and 1x/wk for Matthew for expressive communication. But he is doing great. He just said "mama" the other day for the first time.
We are fortunate that all four babies have no developmental delays and are developing right on track.

Single Mama to 7 kids
Nicky (8); Marc (18); Lexi (15)
BGGB 31 weeks 5 days
www.wilkequads.blogspot.com
http://lilypie.com>

I have 5 kids. ages DS 14, DD 12, and BBB who will turn 3 in January. One of my BBB was diagnosed with autism this past September. The same week I was told that my oldest DS probably has asbergers. It's been a long road with him and now we will start the journey again with one of my trips. I frequent this board daily but don't post that often. I have gotten so much valuable info from this site and look forward to much more. It was tough for me to jump to this forum. I didn't want to accept my new "place" but here I am and I look forward to all the words of wisdom that everyone has to offer. Thanks in advance.

mom to:
B 9/15/93
G 8/1/95
BBB 1/22/05

Hi Lorraine,
I have been on the boards since September 2000 when I found out that I was pregnant with triplets. I don't get on the boards much now, but they were really a great source of support in the early years. I was really happy when the special needs board came up because the main board is so busy, special needs issues were not usually addressed.
One of my sons was diagnosed with autism at the age of 26 months. He was incorrectly diagnosed with auditory neuropathy at 22 months. His hearing is fine, he has moderately severe autism. We started an in-home ABA program at 26 months and are still running one now. He is in Kindergarten this year and the other two are in 1st grade. Two years ago, he spoke his first words. This year when we were putting up the Christmas tree he ran up to it and said "Christmas Tree". It was the first time he said those words. It really made me realize how far he has come. In July, we found him unresponsive upstairs in the guest room. He had a tonic clonic (gran mal) seizure. He actually had a cluster of them. When the ambulance was enroute, he stopped breathing. The neurologist doesn't know why that happened. He is now on daily meds that control both tonic clonic (gran mal) and absence (petit mal) seizures. This weekend, all the boys had a stomach virus. He was only able to keep down his evening meds. He had another tonic clonic seizure on Sunday morning. I guess the good thing is that we know that his medication is working great at controlling his seizures.
All my boys have muscle tone issues. They were all in PT, OT and Speech therapy starting at 9 months old. One of the other boys is still on an IEP for speech issues. He still struggles with tone issues and flat feet.

Colleen
Mom to Connor, Alec & Devon
5/10/2001

http://lilypie.com>

I too have been around for years but haven't posted lately. I do try and catch up on everyone by reading every week or so. Jana (my middle triplet) has mild CP. She was a toe walker and has some minor balance issues. She wears AFOs and still gets Botox injections for spastic tone every 4-5 months. This was her first year of gym class (1st grade), so we have struggled a little with that. She is very aware of her differences and got a few lower marks on her report grade (all things due to her CP difficulties). My hubby and I were not too happy. We will wait another round of grades before totally going crazy about it. It is still so disappointing when she is not treated fairly.

Lori

Mommy to ggg born at 29 weeks, 5 days on 1-30-01

Hi my name is Jacolyn and I have 28 wk BGG triplets born Aug 9, 2005. Grace as PVL and Spastic Quad CP. One of the hardests part right now for me is seeing Grace watch her siblings do things she can and knowing that she wants to. You can see it in her eyes and hear it in her laugh. I don't visit TC much anymore but check out the forum occasionally.

You can check us out at lieck3.blogspot.com