Happenings since then, or our Christmas letter early

Sorry it's taken me so long to post again! So many pictures and events have happened that there's no way to mention them all...I've found Facebook to be easy and quick, and I can do it from my phone which is easier for me because of my vision so that's what I've used most.

It's been difficult to accept the fact that three of the children have been diagnosed with autism (also called Autism Spectrum Disorder/ASD). We can see it, we acknowledge it, we love them just the same. I should have known with Timmy (dx one year ago), because he has very little language and is so fascinated with gadgets and toys with wheels. And the repetitive head flipping...self hitting...a peripheral player...looking up instead of at us (I thought because he's almost blind)...but he's always been so affectionate though--with anybody--which turns out is also a social problem. I figure the affection gene comes with the Down syndrome, although not all kids with DS/ASD are that affectionate with strangers. He does reach out and touch people as we walk down halls, I do think that's partly because of his vision impairment.

Remember, it's now at least one out of ten with DS that also have ASD. The Easter Seals evaluation team said that for us, since they are adopted, it was just the luck of the draw. It is common in biological siblings that if one has autism, a sibling may also have it. I believe there must be something in the genetic makeup that makes for an easier trigger of autism in kids with Down syndrome. We've loved them all! It's not a lack of love, that's for sure! It really is rewarding to see their individual interests and learn what makes them happy. Communication continues to be the toughest part with the two who are nonverbal.

I still wish and hope for a service dog, especially for Ella, who demonstrates the most classic autism. We moved to a one-level house in September. Just having the dog on the day of transition would have been and incredible blessing! I think a dog would be good for all of the family.

So what about Lucy? Our youngest has some typical compulsive behaviors, and some things I believe she has learned from Joel. She likes to watch certain movies at certain times of the day. And she likes acting movies out. They actually have several scenes in movies where they have them all coreographed, who plays which part. For instance in "Tangled", Joel plays Mother G and Lucy plays Rapunzel during the song "Mother Knows Best". It's really fun to watch!

Lucy is quick, we'd consider her "high functioning". But she's also pretty hyperactive. It's not just that we're getting older, it's definitely more than that, we can tell the difference because she is our eleventh child. And she can be VERY oppositional. But overall, she is beautiful, bright and affectionate! She has a special friend in "Grandma Neat", who works with her at home and at church. "Grandpa and Grandma Gibson", a special couple from church, are also very sweet to our kids.

Joel has been blessed to not be hospitalized for a good long time now! Hurray!!! Whew! His weight has been a concern as he's continued to gain but not grow taller. His shoe size hasn't changed in years. The endocrinologist had a hand wrist scan done on Joel and the results were that "Joel has already had a growth spurt (when?) and he probably won't grown much more because his plates are closing."

Joel and Tim continue to have the supervision of a nurse overnight (12am-8am) because of their respective health conditions and machines they are hooked up to at night. We don't know how long it will continue because of the changes in healthcare in our government. Having this care is so helpful and allows us to sleep at night without worrying about them. Linda does cares during the week and Eva on weekends. They're great!

I won't lie. The time that has elapsed since Joel's last Mitral valve replacement in Feb 2011 has been hard for us. Our schedules are much more regimented with very little time for play. We cherish the little things, and hope for understanding from those who know us and work with the children.

We do have personal assistance help from our daughter Mikelle and Juanita for designated hours on varying days during times when all four kids are home. This help is necessary and a huge blessing! (Can you imagine cooking supper with little ones surrounding your feet and opening the oven while others are getting into things elsewhere?) I know there are some out there with larger families and more kids with special needs, but ours are like quadruplet toddlers, with multiple needs...our other kids are grown and away...and I hate to admit it but we're not spring chickens anymore, lol.

Over the past year we have gone to a lawyer and made a legal will, living wills, assigned guardians and had a special needs trust fund written for these kids. Now we just need to be able to put money into that trust for them, so that when we are gone they can be cared for in the manner they're accustomed to.

We still need to sell the old house.

I opened an Etsy shop in May of this year. www.etsy.com/shop/doloresandcompany. I make peasant dresses for little girls. There are several to choose from on the site and I take custom orders. The custom orders are actually going pretty well. Unfortunately, once they sell they no longer show up on the site so people don't see them and can't place custom orders from them. I find posting dresses on facebook helps. My motivation to do this business? I love to sew, it gives me a creative outlet when all the kids are in school. I wanted to earn money so that I could donate little bits here and there to help other children with special needs come home to families; this cause is dear to my heart. And I wanted to provide some modest alternatives to what is available for little girls to wear. Mike and the family helped to build a beautiful dress studio for me--such a gift of love! I've never had an actual sewing room before. This one is perfect because it has a view into the family room and all the way into the kitchen, as well as outside to the back yard!

Milly and her children came to visit and stayed many weeks to help us get ready and move into our newer home. Her help was invaluable! Janina helped us get the old house/new house fixed up, sacrificing many, many hours over the year on these projects. Lora, Gabe and friends, also helped us for several weeks during their summer break. Matt Glass has worked for us in the yard. Ron helped and continues to help with the exterior and yard at the old house. Thanks to the missionaries as well, and ward members for helping with the actual moving day! It's close to being all be finished, but you know how life goes on!

At this writing, Janina is in the Marshall Islands with her new baby daughter that she and Marty have just adopted. The whole family was there for a while, Janina and her two youngest will be home this weekend! She has taken such beautiful pictures there I could fill up my blog with them! Baby Miriam is a gorgeous, plump little brown baby with lots of thick, black hair and big, dark eyes. She reminds me a lot of her sister Genevieve when she was little. We're so excited to meet her! As I have been with each of our grandchildren. I have always wished we could adopt an international waiting child, and Janina is doing it! I'm so proud of her and Marty for taking this leap of faith.

I'm looking forward to Thanksgiving here this year, and hopefully all the kids here for Christmas. Some great things to look forward to! I'm also praying for good health for my aging father and his wife Helena. God bless us, every one!

Love,
Dolores

My thoughts on the Stewardship of Mothers

 
 In my circle of "friends", there are many women who are praying for their husband's heart to soften toward the idea of adding another child to their family.

In my years of experience and observation, I've never really known of many husbands to go around saying to their wives, "Oh honey, I think we should do this, let's please add another child or two or three to our family!" 

Not even among the good and Godly men.

Since the beginning of time, woman has been instrumental in bringing about the family of man. When Adam and Eve were sent from the garden out into the world, Eve was told to bring forth children and Adam was told to work and provide for them.

Traditionally, as God ordained, the woman is the mother, the one who spends most of her time with the children, nurturing, feeding, washing and teaching them.   
Traditionally, as God ordained, the father is the one who goes to work and provides for his family... thus naturally causing him some alarm at the thought of providing for more children.

Both parents are giving service which is love, both interact with their children and of course both parents are responsible for their children's moral and religious example and training until they are grown (and after that we keep on loving and praying for them).

But here is a thought whispered gently to me by the Spirit: When it comes to knowing when it's time to add another child, it is the Mother's stewardship. It is a spiritual, God-given gift to women.

It's natural for a woman to be the one who wants another child. 

Heavenly Father's desire for his children is for them to have loving families.

Of course we must use wisdom. Heavenly Father doesn't expect us to run faster than we are able. But He does expect us to grow.

Women should pray for their husbands and do all they can to bless their lives. Respect and support them in their callings and stewardships. Never say gossipy things--never ever on facebook or other social networking methods! Be trustworthy with his heart.  Be cheerful and find time to go out alone together with your husband once a week.

Men should pray for their wives and respect their callings and stewardships. Ask your Father in Heaven in humble and sincere prayer, in your own words and on your knees, to give you instruction about how your family should be grown. Ask a specific question and end your prayer in the name of Jesus Christ. Then wait and listen for peace, warmth, or joy. It may not be immediate but if it's right, you will receive an answer in a way you will understand.

The Lord provides for his children. I know this. If you're doing what's right, He will bless you.

I say these things in the name of Jesus Christ, amen.

Here is a talk you may find helpful, by President Hinckley, titled: "These, Our Little Ones" 

Breakfast with Garrett

During my recent trip to New England to visit Milly, Ben and their children, I had several occasions to spend some quality time with my almost three-year-old grandson, Garrett.


One morning Garrett and I were having a quiet breakfast together at his kitchen table. I sliced some oranges for him and after he'd tasted them he said, "They're kinda tart!"
I chuckled and cleared my throat, not used to hearing such eloquent conversation from toddlers. 
"What did you say?" Garrett asked.
"Who lives in a pineapple under the sea?" I responded.
"No, what did you say after that?" Garrett insisted.
"SpongeBob SquarePants!" I said.
"And then what did you say?"
"Absorbent and yellow and porous is he!"
"And what did you say after that?"
"SpongeBob SquarePants!"
"And then what did you say?"
SpongeBob SquarePants, SpongeBob SquarePants, SpongeBob SquarePants, SpongeBob-Square-PANTS!"
......pause......
Garrett asked again, "What did you say?"
I answered, "I'm just thinking, Garrett. Sometimes it's good to just think."
I opened my mouth to say something else and he quickly said, "Think some more."
 

I am thankful to be a mother

I've felt for many years that my mission in life is being a mother. I am a mother to my seven biological children who are now grown (ages 21-33 at this moment), and to our four young children with Down syndrome (currently ages 3-11).

Will I ever be finished having children? No. I am--happily--what some term "an eternal mother". Babies and little ones will always be a part of my life in some way, including grandchildren.

Who do I love best? I love each of them, they are each so dear to my heart, whether born of my body or adopted, they are all my beloved children. I believe it is that way with our Father in Heaven; He loves each of us.

Why am I posting this? Because I feel the need to. One never knows exactly what the future holds. I want you to know of my love. I want my children to feel my embrace: even though I may not be near you or be able to give you a hug in person; many of you are now grown and live far away and I don't see you as often as I wish I could. The swellings of my heart are intense.

What changes will come about in our family in the future? I don't know. To my children: I will always be your mother. I love you no matter what! 

Will I be mother to additional children in the future? I don't know. But those of you who know me, know that I'm pretty tenacious. I see the suffering of little children who are waiting for mothers and fathers... and once our eyes are opened, we are responsible to act. I don't like to put limits on what God can ask of me. He is the great "mission president", the Father of all, the one who knows what is best. I want what He wants for my life. For our lives.

I have a testimony of Jesus Christ. I am so thankful that He loves us, atoned for us and overcame the world. This gives me strength and hope! Three sentences there, but they speak volumes for how I view life. The Savior taught us to love one another. He said, "Suffer the little children to come unto me and forbid them not, for of such is the kingdom of Heaven." And He said, "For inasmuch as ye have done it unto one of the least of these, ye have done it unto me."

I have a birthday coming in a couple of weeks. I haven't paid much attention to my chronological age because my life is different than most in my peer group and age doesn't figure. I recently did the math. It turns out I thought I was a year older than I really was all of this past year, so now I get to be that age all over again! I get another year, what a miracle! ;o)

Love and blessing to you all!
Dolores

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!

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!

For Mike

Separated by necessity,
the breach against our will,
we work to reach a common goal,
the needs of all to fill.
The extremity of circumstance
wears upon my strength.
And even though it could be worse,
I hope for lesser length...
of time apart--I'm missing you!
I'm wishing to
be in your arms again,
and able to face every day
with you as it begins.
My darling one, my love, my friend,
when will we be together
when each day comes to an end?
May all go well and healing time
pass quickly until then!

by Dolores

"We ARE family. You tell us what to do and WE'LL get it done!"  Disney's Ratatouille.

A visit from a VIP and World Down Syndrome Day

Over President's day weekend while Joel was still in Children's, we had a special visitor from New York. Glaucio lives on Time Square where he is able to simply walk to his office at the Brazilian Embassy. He came to meet us and to visit Nauvoo as Lora's guest. Lora brought him to the hospital that Saturday morning, where we visited for a few moments as Joel slept. On Sunday, those of us at home had a very interesting conversation during and after dinner. I learned something of Brasil. Someday I would love to visit that country.





We decided that Ella most likely has some Brazilian ancestry, for several reasons... and because she looks somewhat like Glaucio and she loved him immediately.

Glaucio had an older brother with Down syndrome who died as an infant...most likely of cardiac problems... in his mother's arms. So sad! At that time they didn't have the marvelous heart surgeries that we have now. It was interesting for Glaucio to meet our children with Down syndrome and to have them come sit next to him. He said it was "eye opening" to be here and experience what they are really like in person.

He enjoyed his time in Nauvoo and Carthage, going to the temple and the other historical places.

Here is a letter Glaucio sent today, with a link to a Brazilian song and video montage in honor of World Down Syndrome Day which is on March 21st (3 of the 21st chromosome make Trisomy 21, or Down syndrome). It's so heartwarming to me that our new friend is still thinking of these kids. Hugs to you, Glaucio! And thank you to Patricia!

Be sure to go to the URL to hear the song and watch. The children in Brazil are beautiful. Enjoy!
~~~~~~~~~~~~~~~~~~~~~~

Dear Dolores,

A friend of mine, Patricia Almeida, is deeply involved on the Down Sindrome movement and activist. I told her several times about your wonderful family and the marvelous experience to be with you all, specially with the kids. A well known Brazilian musician, composed a song about the Down Sindrome, his name is Lenine and the song is available in the link below, sent it to me by Patricia. She remembered about you and asked me to share it with you. It's a pretty song.  The subtitles in English for the lyrics is available by clicking the English option on the CC bottom, on the down in the right hand side on your screen. Hope you enjoy the song, called World Down Sindrome Day..

http://www.youtube.com/user/CanalFBASD

Glaucio

Update on Joel

We took Joel to the hospitals for several appointments yesterday. He moved very slowly, with oxygen, sometimes in a wheelchair. Here are the results of those visits:

INR: 7.8. TOO HIGH! Blood is thin. Surgeon's office advised us to let him move slowly and cautiously. We continue to follow strictly the doctor's orders on blood thinner; it's still early on in finding accurate dosages of Coumadin after his latest valve replacement. The surgeon's office calls with orders from the surgeon each day, after they receive the results from that morning's blood draw done at the hospital lab.

Joel is becoming accustomed to the frequent lab draws again; always sitting up and holding Papa's hand for support. This morning he spelled his last name out loud for the technician, "W-Y-N-K-O-O-P"! He also answered how old he is, "Ten! Janary!" Afterwards, he always walks into the front office door and chooses stickers for his sticker book. They're all so good to him!

Joel's thyroid level was checked yesterday and was low; endocrinologist appointment resulted in a higher dose for his hypothyroidism.

His lungs look a lot better, continuing Pulmicort in nebulizer 2 X Day, Albuterol in neb 3 X Day. Continuing Vest treatments 2 X Day for 20 minutes each. Decreased Lasix to 2 X Day, Aldactone to once; not at night. Weaning off Steroids and tonight is last dose of Ativan. We can begin weaning him off the oxygen, according to the surgeon, making sure his sats stay 92 or above. Spot check his sats. I will still allow the monitor to run continuously on him during the night. He's continuing to sleep in the Bi-Pap mask at night.

The surgeon recommends that "Joel should stay at Grandma's house for two to three more weeks [because of the other little kids' frequent respiratory illnesses] as staying out of the hospital insurance." We will see the surgeon again in four weeks, so ultimately it will be Joel's regular pediatrician who makes the decision. He will be seen by her tomorrow, but not for that particular decision...yet.
Joel has been more talkative the last few days. This morning he's been moving about acting out a movie, more like the old Joel.

We're so grateful for his continued recovery! Words cannot express our gratitude to God --and to our friends and loved ones for their prayers to the Father on Joel's behalf. Help continues to be needed at home and those that are helping are true angels to our family!

Thursday

Joel slept only two hours during the day today and had a huge appetite. They say it's the steroids causing the increase in appetite.

Papa took us to the hospital lab this morning, for Joel's INR draw. Later, after he'd dropped us off at Grammy's, Joel asked, "Where my house? Where YOU house?" then answered himself, "Papa lost it. Papa lost Joel's house. Papa, you NAUGHTY!"

Joel and I enjoyed some hugs tonight and a story from the scriptures helped him fall asleep. So happy we have this little man. We miss being with all of the family.

Wednesday

There have been several times during the past month+ that I've awakened at night and wondered, "Where AM I ?!"  I'm sure it's been more confusing for Joel.
We're staying at Mike's mom's since his second release from Children's Hospital. He's on steroids, which lower immunities, so any visitors must be healthy.
Joel's been sleeping a lot. He stirred a little during a nap today and said aloud, "Alright Joel, let's go home!"
We're very close to home so that Papa can stop in and bring us needed items. That helps a lot.
Joel is wearing a Bi-Pap at night. He's getting a little better every day! This is a huge blessing!

Monday

This was a day full of arrangements for Joel's discharge. Things should go smoother this time as far as the equipment being provided for him. I'm especially grateful to our professional friends: our kids' physical therapist for support and advice and our good pediatrician for getting things moving!

Joel is having a sleep study tonight, Papa is still with him. The picture looks pretty scary but most of the wrapping is just so that he won't pull wires off.

When morning comes, Joel and I will move to Grammy's (Mike's mom's) house where I will room with him to make sure he always has his oxygen on his face. We will stay there until he is off of the oxygen and past danger of catching illnesses from the other little kids. Thank you, Mom!!

Timmy and Ella will start back to school in the morning. Ella is much better again, working through yet another round of antibiotics.

We'll continue to need help with the three youngest children Tues/Weds/Thurs during the times that Lora is in class and Gabe and Mike are at work.

More prayers were answered today! I'm feeling good about this.