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11 February 2015 08:41 AM # 31

AlwaysRunning

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Joined: 2014-10-10 Posts: 270
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Welcome to the new members - lovely to see the Firefly Garden community growing.

11 February 2015 03:42 PM # 32

moverby

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Joined: 2015-02-05 Posts: 1
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Hi all! I am mom to Anthony!! Our story is a unique one… I’ll start from the beginning.. We, my husband and I were in the “pool” of adoption… We had two prior birthmoms who decided they could not go through adoption.. I never faulted them because I know I would not be able to give up my child either… However, I knew there was someone out there that would need us to care for and love their little one and create a family for them.. We always wanted an open adoption..
Our lifetime partner and birth mom found us on facebook and contacted us.. We hit it off from the beginning; like we were old friends!! Nobody would have even known we had just met each other as we were a great fit from day one…
She was an abused woman who was on the run with two little ones already in tow.. She was 6.5 months pregnant and knew she could not keep him… He was a twin and her ex had abused her so bad that Anthonys twin was lost.. For three weeks she did not know she was still pregnant… When she found out she knew she had to leave… She did.. This was her second attempt at leaving, she wanted to make sure she wasn’t found, he had found her the first time she left (during a previous pregnancy) through doctors appts (so much for hippa) and he forced her back… So for the remainder of this pregnancy she was hopping from free clinic to free clinic for prenatal care.. Everything was going well.. She went in the hospital at 36 weeks and was sent home because she wasn’t progressing.. She went back with labor pains at 39 weeks.. Again sent home.. Finally she went in at 40 weeks… She was dilated to 4.5 and 70% effaced but would not progress… She begged them to help her along because with her previous four pregnancies they had to induce her… They refused because she had no consistent prenatal care with their clinic… Even after she told them she didn’t feel right; and that she knew something was wrong they sent her home anyways..  The next night she was in her hotel room and her uterus erupted and she passed away… Anthony was stuck inside her for an estimated 20 mins..
When they pulled Anthony out he barely had a heartbeat, but it was there so they did everything they could to save him.. Once they got him stable they transferred him to our children’s hospital and he did a 72 hour cooling treatment to help save his brain and other organs.. Following this treatment we were told he would never function in life.. Not even open his eyes… He would never make us happy and we should let him go.. We said absolutely not.. At this point his heart never stopped again… I think he knew… We finally brought him home after five weeks so that he would not spend his whole life in the nicu.. He was not expected to make it more than a couple weeks at home.. He’s seven months old now!!
We wanted to provide him anything we could to help him survive!! Against doctors advice we started Hyperbaric Oxygen treatments.. He has been thriving.. He’s not yet meeting milestones yet, but according to his pediatrician his head is growing at a great rate, not small like most HIE kids and not large that would indicate that it’s just filling with fluid, this tells her that he has a brain that is growing.. His vision and hearing EEG showed he can see and hear but we don’t know to what extent yet.. We are waiting for the results of that… He can open his eyes and he is quick to yell at you for touching his tubie… He still has issues with his saliva building up and he will choke on it or he will reflux and choke… We just keep a hawk eye on him at all times to be sure he doesn’t.. And when he does we suction him and get him going again… He’s been a lot of work, a lot of scary stuff but he makes us happy everyday and he has taught us so much!!! He’s my little hero and he such a little fighter!!!! I know he will start hitting milestones on his own time.. When he is ready.. We love him dearly!!!
Legally we have been jumping through hoops, but at this point we are his legal Foster parents until the court can remove parental rights from the sperm donor (i know bad to say…but that’s all that creep is!) from there we will be able to adopt!!
We just bought the firefly playpak and a tomato chair.. We hope to use them soon..

02 March 2015 09:40 PM # 33

CynGriff

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Joined: 2015-02-25 Posts: 3
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Hi…I’m new to Firefly.  I am in Los Angeles, CA, USA.  I have a 13 year old son, Cole, who has cerebral palsy (spastic quad).  He’s non-verbal (but successfully uses an eye gaze voice output device call Tobii to communicate), non-ambulatory (but uses a gait trainer or adult support to walk, play baseball, dance, ski and even surf), fed through a g-tube since birth (but loves miso soup, sushi, and chocolate fro yo) and is a bright, funny, fairly typical teenage boy.  He’s been part of an inclusion program since he was a year old so he doesn’t know anything different.  Most of his close friends are typical and amazingly supportive of him.  Our story isn’t all roses and sunshine but for the past 13 years we’ve had the inspiration of Cole to guide us through.  My husband and I both work full time, and Cole’s a middle schooler and involved in after school programs like drama and homework club.  We’re prepping for our second hip replacement surgery in June (he had one when he was nine too) and some other leg work to help him to continue to be active on his feet, which is his preference.  I suppose in most ways, we’re a fairly typical family, we just do things a little differently.

15 March 2015 12:45 PM # 34

munam

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Joined: 2014-10-17 Posts: 33
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Hello Monkey Puzzler. First of all I love the name.  Nice to meet up with people in this website.  All of us have a tale to tell about our little ones,  my grand daughter was fish nosed with cp at an early age.  She was born in the USA at 31 weeks weighing 1.075 kg.  my daughter had pre eclampsia and as she was on the verge of having a seizure there was no option but for an emergency c section.  Although very small she was doing good however on the 3rd day something unexpected happened (lawyers tell us medical malpractice) and she passed away.  She’s was removed from her incubator, wrapped in a blanket and out in the corridor awaiting us to come and say our goodbyes before being put in the refrigerator.  However some 2 hrs later she opened her eyes, pushed back the blankets and started crying,  medical staff realized that she was in fact a live baby and had to reverse their decision if bring “expired”.  Yes, she was alive but whilst she had been disconnected from everything she suffered hypoxia and had to be transferred to the largest children’s hospital in Washington DC.  At that time she suffered about 16 seizures.  After brain scans and an MRI we were told that she would never survive and even if she did she would be in a vegetative state.  They told us in cases like hers the kindest way was to withhold fluids and let her just pass away.  They were give her medication so there would be no pain.  Can you believe that?  Well of course we wouldn’t accept that and told them we would love her and care for her whatever her condition,  very slowly she started making progress.  We refused the gtube and very slowly she started taking milk…..5 make initially gradually increasing til she could take the proper amount.  She was transferred to a rehab unit because we refused yo give her put into a hospice.  She was a fighter and eventually doctors said that they would just follow what Khadija would lead.  She’s now three and a half.  We have come such a long way.  It hasn’t been an easy road and we are still on the journey.  She cannot stand or walk yet but she rolls over, can sit unaided now for short periods, eats normal food and is talking.  Speech isn’t always clear but we understand her and really it doesn’t matter.  We live in Saudi Arabia and there is Nitha g here for kids with cerebral palsy, regular physio helps to a certain degree and she goes to nursery school with normal kids and gas interacted well.  Her teacher is English and they get on so well together.  We come to London for therapy.  It’s expensuve as it has to be self funded but for your kids of grand kids no price is too high.  Just to see her lively smile means the world to us. She proved doctors wrong once and fought vckband we pray test she will walk eventually.  Never give up.  Fight for your little ones every time e.  I know there are thousands of other parents/carers out there who are going through much worse things.  People can be very hurtful with their comments about children with special needs,  reading some of the comments yesterday on one wall really upset me.  I think we give children with special needs more live than any normal child if such a thing is possible just because they are so special.  I wish everyone who is in the Garden or in the Bench my good wishes and the vp best of lyck with your little ones.  Being in the garden is the way we can all communicate with each other, sharing our fears of just wanting to get things off our chest when the going gets tough.  It’s an amazing place and I don’t know about the others here but I feel I gave gone to get to know you all. Money, Pyzzler, a healing a heart and all the rest I hold you all dearly in my heart and wish all of you the very best if luck with your little obed.  There us hope for all of us and negs all science us improving all the time.  I gave read a lot about stem cell therapy.  Has anyone tried it?  If so it would be interesting to know how you got on and how successful it us.  At thus stage I’m not really convinced unless I actually gear from families who gave tried it.
Anyway it’s been nice getting to know you all so let’s keep sharing our experiences.
Good luck….....Muna

15 March 2015 12:54 PM # 35

munam

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Joined: 2014-10-17 Posts: 33
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Hello Moverby.  Just read your story and Im so happy to hear you are doing such a good job with Anthony.  What happened to his mother is do sad.  I wish the “sperm donor” would be prosecuted and sent to jail for what he has fine but he will probably evade justice.  So do sad but I really do wish you all the luck in the dorks.  I hope you will be able to kegs,my adopt Anthony. Noes so lucky to give such a wonderful family to take care of him. And I hope his progress will be good. Please keep us posted.  Good luck

23 March 2015 10:47 AM # 36

Charlenejervis

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Joined: 2015-03-01 Posts: 1
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Hi :) we are in co. Louth south of Ireland my little boy is 5 and is on the autism spectrum and has hypotonia and dyspraxia :) he is a lovely little boy full of life and mischief lol

02 April 2015 09:02 AM # 37

AlwaysRunning

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Joined: 2014-10-10 Posts: 270
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Love to see new members posting. smile

07 April 2015 09:49 PM # 38

snsmith

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Joined: 2015-02-16 Posts: 1
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I’m in San Antonio, TX and mom to one very sweet little boy who is 10 months old.  He is at risk for white matter disease and developmental delay due to his birth mother abusing drugs while pregnant but is currently thriving!  I am also a pediatric physical therapist and so enjoy getting to share in the journey with families and their children of all abilities.

16 April 2015 04:44 PM # 39

Laura Hinkle

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Joined: 2015-04-08 Posts: 1
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Hi, my name is Laura and my son’s name is Sean. We are from Nampa, Idaho. My son has Agenisis of the Corpus Colosseum and Autism. We have two dogs that adore my son. Thank you for adding us to this community.

22 April 2015 10:38 PM # 40

Angel

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Joined: 2015-04-22 Posts: 3
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Well, I’m Sharon and I’m from the UK. I have three kids aged between 3 and 13 and my middle son has a working diagnosis of Autism, severe speech delay, moderate social delay and some sensory and developmental issues.

Not really sure what else I’m supposed to put here so I guess I’ll leave it at that.

Oh, and hello!

29 April 2015 12:34 PM # 41

FireflyCommunity

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Joined: 2014-10-13 Posts: 65
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Lovely to see all the new intros. The boards can still be quite quiet but we have a number of moderators on and will share posts to Facebook to encourage responses and new posts.
Claire at the Firefly Garden.

31 July 2015 10:19 PM # 42

Mairi80

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Joined: 2015-07-29 Posts: 1
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Hi there I’m Mairi from north west Scotland.

I have 4 children16,10,9 and 3. My youngest is currently being investigated for various conditions though all tests at present have comeback negative or normal. He has been added to the DDD study which will hopefully bring us some answers. 

I’m only now starting to find out about various things which I can access for my son as no readily accessible information is given to parents with a child with disabilities.

01 August 2015 07:31 PM # 43

Nicole Caroline Karimi-Ghovanlou

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Joined: 2015-07-30 Posts: 1
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Hi, my name is Caroline,  I have a 6 year old grandson who has quad spastic cerebral palsy, and his name is Gabriel. We live in Norwich (UK) and Gabriel loves his DVD’s, swimming and horse riding which he does through the wonderful Norwich branch of Riding for the Disabled.

03 August 2015 12:21 AM # 44

Healing Heart

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Joined: 2014-10-10 Posts: 697
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Nicole Caroline Karimi-Ghovanlou - 01 August 2015 07:31 PM

Hi, my name is Caroline,  I have a 6 year old grandson who has quad spastic cerebral palsy, and his name is Gabriel. We live in Norwich (UK) and Gabriel loves his DVD’s, swimming and horse riding which he does through the wonderful Norwich branch of Riding for the Disabled.

Always so nice to see extended family in the garden.  Glad you joined Caroline. 

Welcome to all new members ;)  Hope to get caught up soon to read all about everyone.  Hugs

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Everyday Holds the Possibility of a Miracle

19 August 2015 02:19 PM # 45

Glorious Treasure

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Joined: 2015-08-16 Posts: 2
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Hello everyone! My name is Shenika and My daughter name is Dream and this is our story that is featured in the August edition of MetroParent magazine.
Thank everyone for supporting us.
 

LATEST PARENTING NEWS

Parent to Parent: Focusing on my Dream
By Shenika Moss

On April 5, 2006, I had twin girls, Treasure and Dream. They were so different from one another. Treasure was a smooth chocolate color, and Dream was light, as if the sun was shining on her.

But it was the color of Treasure’s eyes that alarmed me. A greenish color started creeping when she was about three months, and she was diagnosed with a progressive liver disease that destroys the bile ducts from the liver to the intestines.

Treasure had an unsuccessful surgical procedure to re-establish the bile flow to prevent further liver damage. She was then placed on a transplant list for a new liver.

After 19 months of going back and forth to the hospital and clinic visits, the phone rang at 5 a.m. on Jan. 19, 2008, with news of a new liver for Treasure.

As we were preparing her for the transplant, I spoke to her, saying “you are about to get your liver and you’re going to be all better.” But she became cranky, as the nurse reached for her to take her to surgery. Treasure reached backed for me, crying and fighting. It was like she was saying “no mommy, not this one.”

Treasure passed away 23 days later on Feb. 11, 2008.

It was a rough several months. My mother passed away, and I started to notice that Dream struggled with learning.

She was diagnosed with attention deficit hyperactivity disorder, a label I feared would limit her.

At the time, a psychologist said to me: “I don’t normally say this, but with her being labeled as this, they will continue to pass her through school, and before you know it, she’ll be 18 with a high school diploma but can barely read, write and do any type of math.”

And it was a struggle, and Dream eventually faced expulsion from school. I tried giving her medication, but she lost her appetite and suffered from insomnia. The doctor offered sleeping pills, but I couldn’t let her take them.

In the midst of this, I began to remember being in the basement of the funeral home waiting to get Treasure groomed to be put in her casket. I remember them wheeling her out wrapped in plastic on a stainless steel bed, looking at my child who used to yearn for me, lifeless.

It was a reminder to focus on Dream. I made the decision to homeschool her. How it will all turn out, I don’t know. It’s a day-to-day challenge.

But I am now learning how she learns and researching how to help her.

I wrote ADHD down on a piece of paper, and I started wondering what does that mean for Dream. It didn’t take long to figure it out: All Dreams Have a Destiny.

It’s my goal to now help other families who have children with behavioral issues. It’s about and for Dream and in memory of Treasure.■


Dream has became a entrepreneur in t-shirt desiging. All Dreams Have a Destiny!(ADHD) is to show other children who have behavioral issues and special needs to become leaders and to be the boss of their destiny. If you have any questions about these shirts which will be released on October10,2015, please feel free to contact me.

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