In Memory of Mama

Three years ago on the 11th of April, my mother passed away because of cancer. She'd been sick since that January, and had gradually stopped being able to eat very much. In March the surgeon went in to take out her gall bladder. The surgeon found that there was cancer and it had spread throughout her body. A rare cancer of the gall bladder, which we learned is a commonality between Jews and Native Americans. Native American heritage is in her geneology.

My vibrant Mama was losing abilities so quickly, we were all in shock and denial. After two weeks she came home on hospice...she had one fair day on Thursday when several of us kids gathered and sang to her and she was awake for most of that... then she passed away on Saturday morning, the day before Easter that year.

Losing Mama was very hard. Three years later, remembering Mama during all of her healthy years is still a joy. She was a loving person, always hugging and bringing into her embrace her kids, grandkids, great-grandkids and many, many other people.  I know she's in a wonderful place now, busily helping in the Lord's work. I often feel her influence when I'm down or maybe not being as patient as I should be. Mama was a wonderful example. I love you, Mama!

Joel's "trip in truck"

Some of you have asked me how Joel is doing. It's kind of hard to explain. He is more medically fragile than before, ever since he was in Congestive heart failure in Feb 2011 and had to have a larger artificial valve put in. His lungs, asthma and heart issues keep him from exercising very much, his immature chewing ability and extremely limited food choices add to his weight problem; it's a vicious cycle. He isn't growing in height, his weight goes up and down only a little, some is water weight. Cold and hot weather trigger his problems as do exertion and illness.

Joel was in crisis Friday by the time I arrived home from taking Timmy to the dentist, his PA alerted me by text moments before I got there. As the evening progressed he got worse and was eventually ambulanced to Children's from our local hospital (again), where we were finally able to settled in at 5:00 am to sleep. Joel needed a tune-up, and was then sent home again. Easter Sunday was necessarily a day of rest.

Here's the way it seems, the way I interpret what the doctors said: The new normal for Joel's lungs is abnormal; his heart has another stenosis, we learned about that last month. He's on oxygen on and off in the days, always at night at varying liters, along with his bipap.

There are days when I feel like sobbing in great bursts but I mustn't. I know that Heavenly Father knows the number of Joel's days and what he needs to accomplish here. I KNOW that, I have a testimony of it, the Holy Ghost has born witness of this to me. But it's very hard to see your child suffer repeatedly, and never know when it will strike again. He cries out in his exhausted airy voice when they're struggling to get an IV into his weary veins again, and quotes, "Gimme a chance!" or "It not fair!" and I'm standing there helping to hold him. I wish I could change things for him. I REALLY do!

Oh my Joel boy, little Mister, how we love you!

Since October in one post

We enjoyed Thanksgiving and Christmas, praise the Lord! Since Christmas, Joel has had illnesses off and on (including an itchy rash we've tried everything we and the doctors can think of for) and was admitted to Children's by ambulance for breathing problems in March. It turned out to be pneumonia and some congestive heart failure (he has a new stenosis in a different valve, not the artificial one). With antibiotics, IV Lasix, and lots of prayers, he was able to be discharged in four days, a record!

Timmy has a few words that he can say clearly now. He likes to have the iPad with him at all times because he can see the screen up close. Much of the time he looks up at the ceiling instead of at us, we're afraid his vision is worse than they think...he'll wear his glasses at school and for short periods of time at home, but they usually become broken at home because of the younger kids : ( and we notice that he looks over the lenses most of the time. I hope to try the Mira-Flex glasses with him the next time around.

Timmy is a sweet boy and loves people. The challenges we have with him are trying to get him to eat--he's still fed by g-tube, is very thin and has pretty severe oral aversion. Tim won't allow us to brush his teeth and so they're awful. The dental hygienist explained to me today, that because he doesn't eat, the stuff on his teeth isn't knocked off even a little by the food. They tried cleaning his teeth without anesthesia today and thought better of it quickly. This is one strong, wiry little guy! I fear being judged because of Timmy's dental state (they'll only clean them once a year under anesthesia), but I have to say, "unless you've walked a mile in my shoes..." Timmy is a lovable and stubborn little boy!

Ella has new glasses! We went for the Mira-Flex type that are all bendy rubber-- so far so good. She's wearing them for a little while each day. We get some eye contact from Ella especially when singing songs to her (and when she looks in the mirror she babbles) and she still participates in music, likes to flip pages in books and loves food. This is one kid who knows how to make you feel good about making dinner!

Our efforts to keep gluten away from her are going well except she will still sometimes grab something from someone else and stuff in a mouthful before we can get to her. The numbers were much lower at her lab and she's had a major growth spurt. Potty training on a schedule is moving right along, but she doesn't let us know she needs to go as she has no language except the word "no!" and only uses the sign for "more". Ella is affectionate to the people she knows, I love having her come sit beside me like she does, even at the dinner table, she'll move her chair as close as she can to mine, so that our arms are against each other.

We know when Ella doesn't like something--believe me! She still struggles with transitions and going to new places, having new experiences outside of our home. On the days that we have to take her to appointments, we come home physically exhausted from chasing, holding and helping her calm down. We also know when Ella DOES like something, because she shows it with her whole being. She smiles, and laughs, and wiggles and shares her joy. How can you resist a child like that?

Lucy is as cute as can be and as active as they come! She loves to be involved in everything. She loves to draw on everything (another budding artist), wrestle with everyone, take things out of drawers, flush things down toilets, she's very impulsive, etc. etc, you get the picture! The challenge is to keep her busy with a job to do. Little down time for us ;o).

Lucy can speak in short sentences and amazes us daily. She likes to be in charge and has already taken the role of older sister with two of the kids. 

We expect great things from this little girl!

We have a new granddaughter!!! Vivian Ophelia Ramsey was born to our daughter Milly and her husband, Ben, on March 19th, 2012. A beautiful baby girl who will be sister to our grandson Garrett, almost 3. I will get to go visit them this month, the Lord willing. I can't wait!

As far as selling this house and buying or building another, we're still working on that, but we can't seem to get ahead...things keep happening. So much to do, so little time. Love you!

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!