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  #1  
January 26th, 2007, 02:48 PM
m.and.a
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Take a moment and introduce yourself and your special needs child. Share as little or as much as you feel comfortable sharing!

Welcome.
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  #2  
January 26th, 2007, 05:22 PM
m.and.a
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I'll start. My name is Manda. I'm 30 years old. I am a SAHM to twins born 5.11.06. They were born 10 weeks early. Ada did fine and came home in just about 3 weeks. Aleah was in the hospital nearly 6 months before she came home. She is a "neck breather", which means she has a trach that allows her to breath. She has lung problems and airway problems caused from long term ventilation. She was a very sick baby for a very long time. She has had 4 surgeries and faces more in her life. She has a PDA(whole in the heart) ASD(shunt in her heart). She also has a hernia from the 3 abdomnial surgeries that will need to be repaired.

She's developmentally delayed from being in a medically induced coma for so long and just being sick and not having a chance to grow. She is profoundly hearing impaired and will be getting her hot pink hearing aids in Feb of 06.

I'm an open book. If you have any questions, shoot me a PM or start a thread. I'm glad to be here and hope to get to know all of y'all better.
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  #3  
February 1st, 2007, 09:56 AM
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Join Date: Jan 2007
Location: The Show me state - St. Louis
Posts: 5
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Hello I am new here I have 2 kiddos, Elijah -5&11/12 and Tigerlilly who is 9 months old and in dire need of a bone marrow transplant. She has already had a shunt placed for Hydrocephalus and is having a central line or double lumen broviac placed this upcoming week. She has recieved blood and platelet infusions and will on a regular basis until a match is found.
I have been told by her docs that if this doesn't happen relatively soon the outcome will not be good.
The reason I am sharing this is because Tigerlilly's best option is a cord blood match. Cord blood is found in the umbilical cord and can be donated after delivery. This is the best route for babies in need of a marrow transplant for many reasons but the main one is that it is the easiest to retrieve.
When I was pregnant I never recieved info on "donating" my cord blood, I only recieve info on "banking" which is very costly and really only potentially benifits the family of the donor. That is a great thing but the chances of that family needing it are slim, the chance that it could benifit an unrelated infant or small child is immense.
It is a very scary thing knowing that without this transplant Tigerlilly may not live to see 3 years old.
The condition she has is genetic and the chances that this could happen are 1 in 25,000. It is a very rare and serious condition called Osteopetrosis. Not to be confused with osteoparosis. you can visit [color=#FF6600][url=http://www.caringbridge.org/visist/tigerlilly [/color] ] to learn more and to find links to the National Marrow Donor Program website where there are links to find out more on the condition and how to donate your cord blood in your state.
Thank you for taking the time to read this please know that I am just a mom trying to do what I can to save my baby's life and possibly the lives of numerous other babies who are in need of cord blood.
Please feel free to pass this on and/or contact me at missahiatt@gmail.com. Thank you
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  #4  
February 1st, 2007, 06:14 PM
m.and.a
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I hope you get the donation that you need. The hospital I delivered at didn't have a way to collect cord blood, but when Aleah was transferred to a much larger hospital, I did see many moms come into the hospital with their little box to collect their cord blood. Since my girls were micropreemies, their cord blood was saved in order to do tests.

What if she found a marrow match? I understand that cord blood would be better, but would a match work?
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  #5  
February 3rd, 2007, 06:28 PM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
I am Lindsay and mom to Sydney who is now 15 months. She has microcephaly and is globaly delayed. She is a happy girl and brings so much joy to our lives. She is our first, but will be a great big sister. She has a possible metabolic condition called Methymalonic Acidemia. She recieves B-12 injections every 2-3 days for this. She has never had to be hospitalized but has had so many tests and blood taken. We still aren't sure the cause of this, and may never know. I am doing better with accepting this, although it has been a journey. I used to teach before having Sydney and now I stay home with her. There is really no way I could go back to work with all of her therapies and doctors appointments. It is a difficult life sometimes, but she is my gift from God and I wouldn't trade her for the world! Ask away if you have any questions!
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  #6  
February 5th, 2007, 11:26 AM
ZoesMommie's Avatar Super Mommy
Join Date: Aug 2006
Location: Brooksville,Florida
Posts: 629
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Im marisa A single to Zoe 1yr 3wks old. She has microcephaly,Cp,Hie,Dev. delayed in some areas. Seizure disorder. Its been hard for me. I never pictured this happening to me, I cry alot but im getting through it with how she is overcomming what the doctor has said. They told me when she was 3wks old that she wouldnt be able to do anything. Not even roll over.
Our website is My Webpage


I hope you find a match,happymamaof2. Ill be praying.
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  #7  
February 5th, 2007, 08:19 PM
m.and.a
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Posts: n/a
Risa, She's beautiful! I have older twin brothers who developed very slowly. So much so that the drs said they would also probably never roll over. One is now an engineer for mercedes, and the other is a cpt in the airforce. I hope she continues to overcome! These miracles are amazing!

Welcome!
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  #8  
February 15th, 2007, 10:53 PM
JuneBug2006's Avatar Forever missing Gracie
Join Date: Nov 2005
Location: Vancouver Island, BC
Posts: 5,897
Hi everyone.

I am Kayleigh, mom to Alex (9) and Grace (7 months). Grace has a chromosone abnormality known as "duplication 4p"; it is very rare with only 75-80 documented cases in medical literature.
For us, it is a day-by-day kind of thing.

She has had many tests done, including: ultrasounds on some of her organs including kidneys-heart-and lungs. She has had audiology tests, and she has a vision test set for late March.
Tomorrow she is having an EKG done with a cardiologist from Vancouver.
At some point when she is bigger, she will have a CT scan or MRI done; I have told her pediatrician that I will not have it done sooner unless it is medically required. At the moment all the tests are being done for precaution.

She has had "rocker-bottom" feet since birth (that is what tipped off the pediatrician about her condition); we have found out since January that the pediatric orthopedic doctor is not recommending casting at this time due to the improvements that have been made through our excercising with her daily.......

Prior to this month, she had been seeing her pediatrician once a month, however we only have to see her now about once every 2-3 months unless we have an issue come up.........

She is developing very well. Although she is somewhat delayed, she is still in her age range but at the lower end of it.
This past 2 months she has been doing just great :
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  #9  
March 24th, 2007, 07:44 PM
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I'm Krista, mom to Daniella, 14 mo, who has CP and profound hearing loss, as well as being developmentally delayed.
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  #10  
May 29th, 2007, 06:11 AM
LuckyGirlx4's Avatar Mega Super Mommy
Join Date: Jun 2004
Posts: 2,993
I'll introduce myself here for those who don't know me. I've been a member of JM for 3 years, and I love it here, though I do take breaks when life gets overwhelming.
I'm Krista, stay at home/ homeschooling (for now) Mom to 3 kids, Madison, Anika & Corbin. Anika has special needs. At this point her dx's include Mild Cerebral Palsy, Hypotonia, Ligament Laxity, Arachnoid Spinal Cyst, Severe Reflux Disease (Nissen Fundoplication & G-tube), Chronic Lung Disease, Asthma, Sensory seeking. etc. After seeing the Geneticist this month, we believe that Anika has (and we're testing to confirm) Ehlers-Danlos Syndrome Type III as well as a Mitochondrial Disorder.
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  #11  
June 9th, 2007, 09:58 PM
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Join Date: Jun 2007
Location: pennsylvania USA
Posts: 14
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Hey all im amber 26yrs old married and have 4 children drake 5yrs faith 4rs brandon 3yrs and cayden 21mths. cayden is the one that has the special needs. he was born 3.5 weeks early and had all kind of health issuses since then. he had lung disease, pnemonia when he was born and a hole in his lungs. he now has what they call hyper active airways and gets stressed very easily and can go into a sever asthma attack. he takes 4 different prescripictions a day he was also diagnosed with seizures which he only had 3 when he was 3mths old plus he was diagnosed with kidney failure but so far its not real bad and i hope it stays that way. that about does it for my little man

Quote:
I'll start. My name is Manda. I'm 30 years old. I am a SAHM to twins born 5.11.06. They were born 10 weeks early. Ada did fine and came home in just about 3 weeks. Aleah was in the hospital nearly 6 months before she came home. She is a "neck breather", which means she has a trach that allows her to breath. She has lung problems and airway problems caused from long term ventilation. She was a very sick baby for a very long time. She has had 4 surgeries and faces more in her life. She has a PDA(whole in the heart) ASD(shunt in her heart). She also has a hernia from the 3 abdomnial surgeries that will need to be repaired.

She's developmentally delayed from being in a medically induced coma for so long and just being sick and not having a chance to grow. She is profoundly hearing impaired and will be getting her hot pink hearing aids in Feb of 06.

I'm an open book. If you have any questions, shoot me a PM or start a thread. I'm glad to be here and hope to get to know all of y'all better.[/b]

Well i was gonna say i hope she gets better but im so sorry for your loss i know you probablly dont want to be reminded but i wish you the best of luck. be strong and good luck
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  #12  
June 9th, 2007, 10:07 PM
Member
Join Date: Jun 2007
Location: pennsylvania USA
Posts: 14
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[quote]
Hi everyone.

I am Kayleigh, mom to Alex (9) and Grace (7 months). Grace has a chromosone abnormality known as "duplication 4p"; it is very rare with only 75-80 documented cases in medical literature.



Im not sure what that is but caydne also has a chromosome abnormality his is known as duplication 32q9 which means he has an extra chromosome and i have the same thing as he does and they have no known cases at the moment that have been reported and that can cause a number of things such as autism, mental retardation, speech delay, FTT, and other things but so far cayden only shows signs of FTT and speech delay so we will see. i wish you the best of luck
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  #13  
July 16th, 2007, 10:15 AM
capetillar's Avatar Super Mommy
Join Date: Jul 2007
Location: NE. OH
Posts: 809
Hello all, I'm Michelle. I'm mommy to three little ones.
Our oldest is Alexis-she'll be 9 in November. She was born at 32 weeks and came home on a billi-blanket. Overall she's doing great and has very few if any of the "effects" we were told to expect. She's actually pretty darn healthy.
Our youngest is Leo-he'll be four next month. He has really no healthy issues at all. He's just a rambunctious little boy!
Alyssia is our middle child-and she has special needs. She was born at 42.5 weeks-and at first was quite healthy. She got sick shortly after birth though-and it went downhill from that. Years of testing, poking, prodding-I'm sure you all know the drill.
She had an NG in, on and off, until December 2002. That's when she had her mic-key placed. She had to re-learn how to eat and spent the majority of the next two years on baby food and tube feedings. It was 2006 before she could sit and eat a meal-and even then her meals are about half of what a child her age *should be able to eat. She's very petite, but a total spitfire, lol.
To shorten this up, I'll just list what's currently going on and her issues..
had nissen fundoplication in 2002
learning delays
gross motor delays-which haven gotten MUCH better in the last two years-she only has mild to moderate delays now
dyslexia
oral aversions and texture aversions
asthma
vision problems(this has nothing to do with her other problems, poor vision and vision problems run on BOTH sides of our family, all of us, except our son-for now-wear glasses)
severe GERD
Had her mic-key removed July 3rd 2007-but is currently hacing some other issues related(and non-related it seems) to that.
She sees an OT, a ST and was seeing a PT, but no longer is.

She really doesn't let her issues hold her back. And most people-to look at her-think there's nothing wrong. I am so beyond grateful for that(no offense meant to anyone). It's just that people can be so very cruel, when they don't understand. We had a serious issue with a mother in her kindergarten class last year, the very first week. When she found out Alyssia had "issues", not to mention a feeding tube(forget the fact that we weren't using it at the time, lol). Apparently this mother took issue with the fact that HER son, deserved better. She didn't think HE needed to be in a "mixed" classroom, as it would take the teacher's attention off him and all of the NORMAL children(her words). Sick, huh?
Of course she doesn't(and we don't) hide the fact that she has issues and problems-but sometimes it's nice NOT getting those looks, the comments, etc.. I'm sure most of you understand. I hope I haven't offended with that comment, I don't mean to.

Anyway, she's really excited to be rid of her mic-key now! She's not constantly holding her stomach, protecting it-although she does it out of habit now, lol. Gym class in school, and recess, will be MUCH smoother for her. She's just very excited. Right now we're hjaving some problems with her site, and her acids. The docs upped her meds, but I don't think they're going to work very long. She's always had an elevated acids problem anyway. When they did her surgery to remove the mic-key(they don't usually have to do surgery, but she had other things going on) they removed a LOT of built up tissue and some clumping that was just inside the opening and also on the outside. The scar looks a bit nasty, but in time, it'll heal. And she'll be left with a reminder that even when you're counted out....there's always a little bit of umph left!!
Anyway, you can see our kiddos here-and there's pics on the bottom of Alyssia's page, from both before the removal and after.
Our Korner

Sorry to ramble. It's ncie to meet other mommies. I see some familiar faces here, from other boards! Nice to see you all!!
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  #14  
August 1st, 2007, 02:23 PM
Regular
Join Date: Aug 2007
Posts: 1
My name is Amora. I'm 27 years old. I'm a homschooling Mommy to Sammi [11-27-00]


Sammi is legally deaf. She can read lips and also knows sign language. I am very lucky beause I've known sign language since I was a teenager and was able to fill in the blanks of words I didn't know quickly.


I'm really excited to meet everyone!!!!!






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  #15  
April 11th, 2008, 02:52 AM
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Join Date: May 2007
Location: Singapore
Posts: 29
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Hi I am yama , Mommy to Rishi (28 dec 2006). Rishi is globally delayed and is visually impaired. He has acute GERD and constipation. He is a happy child but his development rate is getting slower by the day. Being in the forum gives me all the encouragement to keep the patience. Good work ladies.
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  #16  
April 12th, 2008, 10:02 AM
Momma Jo's Avatar Monsters Ed
Join Date: Apr 2008
Location: South Africa
Posts: 880
I have posted Duncan's story in the general chat area, but I'll post it here again...

Duncan was born with the rare genetic disorder, Hirschprung Disease. He was diagnosed at 17 days (3 May 2002) after extensive tests on his digestive system. Duncan had his first surgery on 6 May 2002 to remove his entire colon. He had an ileostomy (which is when a they bring the small intestine to the surface) and a bag for just under 11 months. On the 14 March 2003, he had his reconstructive surgery to remove the bag and to take the intestine down to his rectum. The surgery was a huge success. He has done well and suffers very little symptoms of this disease.

We have to take Duncan for MRI and CAT scans every 3 months. We found out that the RET gene that is possibly the cause of Hirsphrung's disease can also cause brain tumors. So far so good

We recently discovered that he is having trouble controlling his bladder. We aren't sure if this is due to his Hirschprung's Disease, but we have been referred to a urologist who will be able to give us more information and possibly medication/treatment to help him gain control at night.

For more information, please visit his website at: http://www.babiesonline.com/babies/d/duncangrant/

Here is a photo of him just after his first surgery in 2002:


Here is a photo of him taken on Sunday at Corbin's birthday party:

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  #17  
July 26th, 2008, 08:21 AM
tinymomma's Avatar Platinum Supermommy
Join Date: May 2006
Location: Michigan
Posts: 7,271
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Hi I am Robyn, I am 28 years old and SAHM to Megan 9, Elijah 7, Andrew 4, and Joshua 19 months. Joshua is our special needs child. We realized at 12 months when he wasn't meeting milestones that something was up. He had a MRI and was diagnosed w/ PVL (which is brain damage that causes developmental delay). Now two weeks ago we went back to the neurologist and they diagnosed him w/ cerabral palsy or static encephalopathy diplegia ~ which means the lower extremities are affected more then the
upper & hypotonia and also expressive aphasia. He will be getting PT and speech therapy.
He is 19 months old and doesn't walk or crawl...he does a butt scootch that is SO adorable. Except for when he's outside....uggh. I have learned that he's just going to be dirty lol after all he IS a boy!!!

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  #18  
March 9th, 2009, 07:36 AM
Member
Join Date: Mar 2009
Location: Fort Campbell, KY
Posts: 12
my name is Jennifer. I have two girls. Madison 8/11/2005 and Annabelle 10/7/2006. Both my children have special needs but nothing compared to what everyone else has been dealing with. Madison was born at 38.5 weeks because of my hp and gestainal diabetes. She was diagnosed with IUGR and weighed in at 7 lbs. At 2 Madison was diagnosed with a speach delay, and a sensory processing disorder. At 3 she was diagnosed with adhd and ODD. She was able to start Pre-k a year early and is doing very well. She was also placed on meds for the other issues. Annabelle had been causing issues since I was pregnant with her. They induced me again at 41 weeks and figured i would need a c-section because they were guessing she was about 9 lbs. Well 45 mins after them breaking my water my dd arrived. We were all happy but then everything went down hill very quickly. Her blood sugars were very low 39 and then after eating about 1 oz of formula 35. So they took her to the special care nursery and started IV's. Then they saw blood in the iris of her eyes. They were also drawing blood to send to the lab and they were having a problem, her blood wasn't clotting very quickly. They quickly gave her a shot to help her blood clot. Then they tried a little later to get blood and they were having a hard time. SHe was clotting too much and they were having a hard time getting blood. this went on like this for 2 days and finally they sent her to Vanderbilt children's hospital. The doctors in the NICU and the nurses were very nice. They would go out of their way to make you feel like you were an active particpant in your child's care and not just a wall flower. They gave all the children in the nicu names (strong names), my child was nicknamed Miss. Piggy. She snorted like a pig when she got mad and she was getting enough from her iv but still was eating 3-4 oz of breast milk (expressed) every 3 hours. They nurses hadn't seen such a big baby in the NICU for a long time. She was in one bed wighing 8lbs 15 oz and the child next to her was 1 lb 15 oz. the mother of that little girl and me became quick friends. Because I was running between home and the hospital and had another child to care for, she helped the nurses and me out my giving my dd her bottle if I wasn't there and holding her. It was very nice. We got to leave the hospital 4 days later. We have had to see eye doctors regularly. She has issues with her eyes, and will need to have more testing down when she is a little older. THey know she can see but not sure how clearly things are. SHe has a speech delay, sensory issues, and they think there may be more but they are not sure at the current time. We are still going through testing.
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  #19  
March 20th, 2009, 02:07 PM
Ditzzy's Avatar Stupid Lamb;)
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Location: OH-IO
Posts: 9,023
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My name is Hope and I've posted on here before, but never on this roll call thread.
To make a long story short, Ava has defects that effect her larynx, trachea, epiglottis, palate, tongue, and skeletal system. Some of these defects obstruct her airway. For right now, this is all we know. She's been in & out of the hospital a few times with more to come. A common cold can put her in the ICU. She's hooked up to monitors 24/7 and lives in respiratory distress complete with blue spells, home nurses & too many doctors.
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  #20  
March 25th, 2009, 09:56 AM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
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I suppose I should introduce myself too, since I pop in here now and then. I'm Kel, mom to a pair of crazy boys. Danny just turned 1, and he's got a few things going on that are sometimes difficult for even me to grasp.

The first is easy: he's deaf. He had his hearing when he was born, but when they did a follow up screening at 2 months we learned he had lost his hearing - all of it. He has cochlear implants, which allow him to access sound at the level of a mild hearing loss, and has weekly therapy sessions to learn to listen, hear, and eventually speak.

The second is the difficult one. Danny was born 4 weeks early with a severe, symptomatic congenital CMV infection: his liver and spleen were enlarged, his blood counts were dangerously low, his brain ventricles were enlarged, and there was evidence of calcification in his brain. The results of all of this are, well, pretty unknown still. We were told he was at "very high risk" for cerebral palsy, developmental delays, learning disabilities, various apraxias, and possible microcephaly as the virus can restrict or halt brain growth. Fun, huh? At one year, he has global delays, but only a few months' worth - he has learned to crawl and can bear weight on his legs. His fine motor skills really haven't started developing much at all. He does not put things into his mouth very often, so we're beginning to question possible sensory issues, and of course we won't know for years yet if he has any sort of speech apraxia, learning disability, etc. He's followed by PT and soon to be OT, and displays a strong preference for his right arm and hand which his left lag behind, as well as having pronation that will probably require foot braces. The difficult part this young is that many things "could" be his personality and just who he is, but could just as easily be remnants of his cCMV.
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