Easter Seals and Autism

Two of our children have been to Easter Seals and after long, cumulative efforts and evaluation by an interdisciplinary team, Ella and Joel have been officially diagnosed with Autism. We have suspected for several years, but to have an official medical diagnosis is helpful...and hard.  We hope that this will help them in the schools as well as otherwise. There is no more just wondering and guessing, we know. God, give us the grace to accept the things we cannot change. And please, if you see fit, bless us with an Autism service dog!
http://www.4pawsforability.org/dream.html#EllaWynkoop

A SPECIAL REQUEST FOR ELLA

You all know where my heart is. You know I love these kids; my kids who are grown and their kids... and our  little sons and daughters with Down syndrome. This is my mission in life. I love them all, and rejoice each time another little one with Down syndrome or other special needs is loved and embraced by a family!

I talk to people wherever I go, like a saleswoman, only I'm selling LIFE. I tell them about the children waiting internationally who, if not found and adopted will die in mental institutions and give them Reece's Rainbow's website: www.reecesrainbow.org. 

I tell them about babies needing adoption in the United States who often will be aborted if families aren't standing by waiting to adopt them and the website for the National Down Syndrome Adoption Network (Robin Steele) at www.ndsan.org

I've struggled with the fact that I need to fundraise for another important thing at this time... because nothing seems as important as saving lives... but this is also about saving lives in another way, so here goes:

We are fundraising for a Service Dog for our children. Especially for Ella, because besides the Down syndrome, she also has classic symptoms of autism.

Going out in public has become more difficult because she will struggle to get away and dash into traffic. If she has an Autism/Multipurpose Service Dog, this would give her more independence as well as safety. She could be tethered to the dog out in public, allowing her a little more freedon (her hands free) but she couldn't get away and run into danger.  This would allow our family to go out with more peace of mind. The dog would be trained to give comfort to the children in their many doctor's appointments. Stimming behaviors and meltdowns could be interrupted with affection from the dog. Having a Service Dog would also allow Ella to meet peers, because children would be interested in the dog, and be more likely to approach her. As she has no speech and her behavior is different, Ella doesn't make friends easily so children meeting her because of the dog would be a great help to her!  The dog will be with her at all times and she will gain a best-friend attachment and learn nurturing. Because we must constantly guard against Ella or Joel wandering off, the dog will also be trained as a tracker.  Can you imagine the peace of mind this could give us?!   

Please go to the website of 4 Paws for Ability at www.4pawsforability.org  to look around and read stories of other children who have already received their service dogs and how it works.

And please, if you can, donate to 4 Paws for Ability, Inc. for a service dog for Ella! The dogs are very expensive because they are so highly trained, specifically for the child(ren) they will belong to.

Please make checks out to:  4 Paws for Ability, Inc.  Write Ella Wynkoop in the memo!


Mail to: 4 Paws for Ability, Inc.  253 Dayton Ave, Xenia, Ohio, 45385.

And GOD BLESS YOU!!!!
                                   

Sweet Angel waits and waits...

Please go to this blog and read about Liliana. She's a precious little girl who urgently needs help to come home quickly to be healed! This is real, I know the person who took her pictures.

http://www.nogreaterjoymom.com/2011/08/because-it-is-our-problem.html

I can't get her off of my mind or out of my heart. Please let her into yours!

Love,
Dolores

UPDATE:
My heart is full in the marvelous news that this child's adoption fund was FULLY FUNDED in 24 hours from the date of the above blog post! She now has a paper-ready family committed to going through the process to adopt her!!! Thank you Heavenly Father!

Note: There are other children in similar condition needing families quickly! Go to www.reecesrainbow.org and visit the waiting children available to older parents or large families, link on the sidebar of that page. Of course you can view all of the children waiting on their site. I'm sure you'll find one that touches your heart.

THANK YOU!!!

Another close one for Joel!

Those of you who are  on my email list and facebook, know that Joel had another serious, long hospitalization in May/June. He began breathing more noisily, fell asleep during home tutoring and then that night complained of pain in his back and acted like he wanted to climb out of his skin. He was intubated by the life flight team at the ER in our town and then transported to Children's by ambulance because it was a very stormy night and the helicopters couldn't fly in it.
The doctors at Children's stood around his bed watching him for hours. The nurses and respiratory people came and left round the clock, hauling big helium tanks in and out. I'd never seen his ICU room so busy, not even after his heart surgeries. They used treatments I'd never seen before. I knew it was bad. Many many Prayers went up! I was ready to let him go if that was God's will, but every now and then I'd find myself crying and would have to leave the room.

His birth family came to visit him. Finally after a few days on the vent, he turned a corner. Then he began pulling things and we knew he was back. Joel was on the vent for 9 days, the longest ever, even after surgeries he was on the vent only 6 days and we thought that was long enough! He was in the hospital for three weeks. The doctor that had stood by him the first night told me later that we'd almost lost him. I knew.

Joel is doing much better, and is now back in school. He has an oxygen concentrator there, with tubing and mask, as well as his nebulizer and meds, to be used as needed. The teacher is intimidated by this but the school nurse is ready to help.

We also have the blessing of night nursing for Joel now, so that he can be  monitored closely as he sleeps. The nurse sits in his room and checks him whenever his pulsoximeter alarms for breath or heart rate. She replaces his Bi-Pap if he tries to remove it. She administers his night and morning meds and charts everything.  At first I was worried about having strangers in Joel's room all night, but now I feel alright because I have become aquainted with these nurses and know that I can sleep without worrying about Joel. We'd had many, many sleepless nights this year with Joel.

I express heartfelt gratitude for the gift of this child, that his life has continued and that he continues to make us smile and chuckle, through it all.

I have to repeat the story of something he said during this last hospitalization. It was after he'd been in big trouble with the nurses...he'd coughed up his vent one day, pulled his NG-J tube three times...and that morning had pulled his Pic-line. He was on their Naughty boy list. Then I heard him talking to himself as he turned the pages in his big dog book, "Joel, you okay?" he asked. And then answered himself, "You Jesus' boy."

I laughed, I cried. From the mouths of babes!

We're home!

With our pediatrician's permission, Joel and I came home. We're all happier being together again! Joel is much stronger than he was at release from the hospital three weeks ago. It's been seven weeks since his surgery. We can't keep him in a bubble forever and she said he will get sick, that's to be expected, but at least now he should be better equipped to fight things off. He's not ready to go back to school yet and will continue to have a tutor for short periods per school day and speech therapy once a week at home, until he's through recovery. Part of the reason he can't go back to school yet (besides having decreased stamina for a long day) is the continued quest for his blood thinner to be at the level where it needs to be.

The oxygen still runs through his bi-pap at night for now. His sleep study showed that he was having 20 episodes of sleep apnea per hour, which is severe! With the bi-Pap, that number has been reduced to about 2 1/2 episodes per hour, which they're pleased with at the sleep lab. He will have bi-annual visits there. It seems the prayers have helped him in several ways!

Oxygen

Joel is going for periods of time without oxygen, still requiring it when sitting quietly or sleeping.




I'm pleased that he's very talkative when sharing things of interest, like his "Family Book" that his sister Milly made and sent to him. He LOVES showing it off and naming each person! He can tell me whose house each picture was taken in, "MY house!" or when it was taken: "Joel's birfday!" And with some he'll give other captions, like "Milly Christmas hat, Christmas tree, Shrek Story PRESENTS!" and "Marshall chocolate face", and "Graf is like Prince Charming." Joel likes to place each person he knows as a character from his favorite movies.

We're homesick. I feel so terrible about missing ALL of these WEEKS with my other babies! Lora had barely been home and then she was thrown into life as a mother (sorry I'm missing this time with you too, Lora, and thank you!!!) plus she's in school full time...Gabe is helping when he can, (thank you Gabe!!) plus he works full time...and friends from church are doing the care taking when Lora and Gabe are both gone and Mike's at work (Thank you, friends!!!).

The little ones are getting sick; they have runny noses again (frequent sinus infections) and Mike said Ella was croupy last night. This is why Joel and I can't be home yet. I'd hoped for us to go home by this coming Monday, but maybe at least by the end of March?? I'm experiencing daily jaw pain and headaches...maybe from stress? We've decided to take some of the pressure off by waiting another year to sell our house/buy another. It makes me sad to miss more time with my dad, siblings and cousins. I always worry that it'll be too late! But we need more time to heal, regroup and be ready for more big changes.

We'll keep praying! I'm praying for many of you out there, that also have big trials in your lives right now. My heart goes out to you!

Helicopter vest

Joel's Vest treatment sounds just like a helicopter. Here's how he looks in the vest at Grammy's---doing a breathing treatment at the same time. The vest fills with air and then the tubes send fast bursts of air into it to shake his lungs free of mucous so he'll cough. The compressor unit itself looks like a large boom box. Joel's still needing oxygen in decreasing amounts but especially at night. His lungs sound great in the mornings and then his breathing gets rougher as the day wears on.

We've had a few visitors, including a wonderful woman who cut Joel's hair, his school tutor, home health care nurses and others whom he remembers and loves. Aside from grieving over the loss of home and family as he knew it, he's adjusting well to life as it is. I'm so pleased to see that he does remember people and things that he's learned at school. Our boy can read! And he can count to 50 out loud and identify many numbers!

Lora is giving her report on her mission to the high council tonight. I would've loved to have been there for that, but those who could go, are there.

Time for Joel to go to bed, goodnight everybody!