Catching up!

Catching up since Wednesday!  Sometimes I have to go back and read my last blog to remember what I wrote:)  I write a lot of blogs in my head so I sometimes forget the ones I do actually write out LOL!

Another thing I forgot.....Thursday I noticed (thanks to Steve) that my driver's license was expired.  I truly did not think it was expired, thought I'd gotten a new one and misplaced it somewhere and still had my old one.  So on Friday we were already planning on going to the DMV to get handicapped plaques for our vans for the kids so while we were there (forever of course!) I checked on my license....sure enough it was expired....since last year......YIKES!  Of course I didn't have all of my paperwork with me to get it renewed and had to go back today to renew it.  Of course, I forgot something and had to go home and get it ......  So we are now all LEGAL!   Sam and Sarah have their handicapped parking plaques!  YEAH!  There are times when I have to carry Sarah for miles it seems!   With Sam he will walk some and then "collapse" and want to be carried.  Once I can get him in a store, I can usually put him in a buggy.  When I have both of them, it's rough!   Sam used to have one, but it's such a hassle to get it renewed, that I let it lapse more than a year ago and just finally did the paperwork.  It's a big help with all of the little ones.  I still have to take Selah up, but we've arranged to do it right as they are closing so it won't be such a hassle.  She has to physically go and have a picture taken for her tag. 

Shad spoke for Habitat for Humanity today to a group of Cub Scouts.  We rushed there from the DMV office and walked in right when it was time for Shad to share.  He did a good job, even though I helped him with the speech I got teary eyed!  He also got to make a bird house:)

 

 

 

 

 

 

 

Tomorrow will be ONE full week on the Vegan diet!  Jon has done perfect.  The only thing I did was eat a Amy's vegetarian pizza that had a tiny bit of cheese on it.  Otherwise I've had  no other animal products.  I've shopped twice, once at our regular food store and once at a health food store.  It was hard at both places to find foods with no meat, dairy or oil!  This afternoon I did two vegetable dishes and made lemon oat bran cupcakes.  Sam has been eating some of the food with us, we let him try everything.  He is so funny, he really is the healthiest child, he loves loves beans of all most any kind.   One of the dishes I did today had eggplant and zucchini in it and he liked it!  I'll post the recipes later.  We've found a veggie burger that is really veggies and not alot of soy.  We really don't want to eat a ton of soy either.  We bought a hot air popcorn popper and use it almost daily for the "feel" of chips. 

 

I got the book "The China Study" that is the other side of plant based eating research.  It's a hugely famous book on nutrition and how what we eat affects rates of cancer and its growth.  Basically the idea is if a person eats a plant based diet, the body is able to protect itself against cancer.  This is based on several studies, the largest being done in China.  It is an interesting book and mentions Dr Esselstyn and his heart research.  Quite clearly the studies both show if we eat plant based foods, we will be healthier!  This is not a fad diet but a lifestyle. 

 

The hardest thing for me is no cheese and no oil, I LOVE Oil Olive!!!!

 

But I'm glad Jon is so into this change also.  It is helpful to have him wanting to do this just as much as I do.  Sometime in the next week I'll take pictures of some of our foods and give you some recipes!

 

It is challenging to do dinners for the kids.  For tomorrow I did chili in  my 3 crockpot set (they are all attached)   One chili is Taco Chili with low fat ground chicken.  One is regular chili with ground chicken and one is Vegetarian Taco Chili.  I'm also soaking a 15 bean soup and it will be ready to go in another crock pot in the morning. 

 

At least we can eat whole wheat bread as long as there is no oils in it:)  I've NEVER been one to think bread is bad, unless it is just white bread.  I actually found some pita wheat bread and wraps that have no oils in them and are 100% stone ground whole wheat.  They will be perfect with our food tomorrow. 

 

Jon and I took advantage of this wonderful weather and hiked 5 miles yesterday and 2 miles today.  My knee is better, still some pain but improving.  I took our kids' Physical Therapist advice and have been wearing shoes (not flip flops) even in the house.  I have a thing about shoes in the house but I bought a new pair of shoes just to wear inside to see if that would help and it seems to do so!

 

Our house is nearing completion!  The outside is finished.  The A/C, electric and plumbing is done.  Monday or Tuesday, the county comes to inspect it.  Once it passes, then the insulation and dry wall go in.  Then it's painted and the flooring and cabinets go in.....  Also next week, they are bringing in more dirt for the front yard.  The rains have turned it into a small pond!  It's really exciting:)

 

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And I want to share more about Sarah's Covenant House in India

We just committed to sponsoring Charlotte!  So she is now fully funded

http://schindia.com/children/charlotte/

We are sponsoring her along with a few other people.  You can give whatever you can to help these sweet kids. 

 

http://schindia.com/children/brianna/  Brianna needs sponsors

 

 

As does Chloe

http://schindia.com/children/chloe/

 

 

 

 

 

Then there is SELAH!

http://schindia.com/children/selah/

 

 

 

 

 

We had a hard time choosing between the girls, but I let the boys decide and they said Charlotte reminded them of Sarah so we had to sponsor her!  Although the boys reminded me of the last time we were 'just going to sponsor a little blind girl"  that would be Miss Sarah Joy who is sleeping on the couch right now!  LOL

 

Please consider sponsoring one of these little girls!  Your gift will make a difference in a little life.  SCH is able to take the children out of state ran orphanages and give them care in a home setting.   I'm so impressed by everything I know of this ministry!  What a great Valentine's gift that would make to really show LOVE to a child that needs You!

 

 

Hope you all have a Happy Valentine's Day and a great weekend!!!!

 

 

 

 

 

 



 

 

 

 





 

Happy 11th Bday Sam!

Can it be my little guy is 11 years old today???   We took him out to eat last weekend (before Jon and I went vegan LOL)  He got a few toys then and I gave him a few more this morning.  One funny one he got is a fart gun.  It makes a loud noise and lights up. 

 

Yep that is a fart gun:)

 

 

 

Easy way to get to the present!

 

 

 

 

Light up toys ROCK!

 

 

 

 

This is just so cute of him

 

 

 

 

 

 

 

 

 

 

 

 

 

Then Steve and I took Sam & Sarah out for lunch at Wendy's (no I did not eat) and then to Walmart.

 to get some bedding for the dog's house as it is going to get colder this week and she loves to claw it all out.

 

 

 

 

 

 

 

 

 

 

I just thought these pictures are funny looking.  Sam will walk around some but he hates that Sarah gets to sit in the buggy so then he wants in too. 

 

 

It's hard to get my mind around the fact that he is 11 years old.  He weighs just 51 pounds and is only 3 ft 9 inches.  he's wearing a size 6 but the clothes are big on him.  His little life made the difference in three other little lives.  If we hadn't had Sam, we would have never had the nerve to step out and adopt the other three children. 

 

 

Sam is such a unique child from his crazy DNA to his funny little ways.  He is greatly opinionated, even if he can't speak and has absolutely NO patience.  (I have no idea where he gets that from)  When we were at the geneticist, they took pictures of his face from different angles, and then of mine and Jon's too.  They kept commenting on how different features of Sam's are exactly like his dad's.  We say that all the time too.  We always say he got his looks & nose, from his dad and his attitude from his mom!   I want to be like Sam when I grow up, he doesn't suffer a fool at all!  LOL

 

 

Sam is such a joy to us.  We adore his funny little opinionated self.  We feel so blessed to have been chosen to be his parents.  Sam changed my life completely, there has been no bigger influencer on my life than that little boy.  He's  taken me places I never dreamed of, brought highs & lows to my life and given me a purpose in life. 

 

If you would have told me 20 years ago how wonderful it would be to be the mom of a special needs child, I would have never believed you.  Also if you told me 20 years ago, where I'd be at now, I'd probably ran screaming off a roof LOL  But I could not have comprehended how life with Sam has been. 

 

I don't know all of the secrets of the universe, but I do know that little lives like Sam's are so very precious.  Yes, it may change your life, change your priorities and change your bank account....but it is so worth it. 

 

I love my boy!  The thought of him just makes me smile. 

 

Thanks Sam for hanging through a difficult pregnancy, early birth, months in the hospital, so many medical issues and close calls , a life threatening seizure, years of wearing an apnea monitor,   over 50 eye surgeries  or procedures.  more hospitalizations than I can recall (over 35) and a near drowning.  You are so dear to our heart.  You've had many things to overcome, yet you did!  We love you more than life itself!  

48 hours as a Vegan (Dr. Esselstyn's diet to prevent and reverse heart disease)

For years Jon and I have tried to eat healthy.  His dad had open heart surgery just a few months before we married so Jon took things seriously when the cardiologist spoke to the family.  At that time we thought healthy was a Lean Cuisine meal and margarine on our white bread.  As time went on, we were all into the "Healthy Balance" spreads and milks etc.... Heck I thought I was healthy when I quit diet soda and just began drinking regular Pepsi LOL!

Then about four years ago we learned that Sam was missing a liver tumor inhibitor out of his DNA.  He had one but not two like most folks have.  That scared us and we went organic for the most part.  Of course we still ate out some, which was our only down fall.

Then in 2013 we began reading research about heart health and switched to ONLY "expeller pressed oils" and olive oil.  We focused on more veggies and fruits for the family. 

Our concern has been Jon's family history of heart issues.  It's about as bad as you can get.  He has managed with exercise, self control and good eating to keep his cholesterol in an acceptable level between 197-211, it has fluctuated.  Because of his family history the doctor wanted to put him on some statin drugs but there are a lot of side affects to those drugs.  My cholesterol has been around the same also.  We both have low blood pressure and no issue with our sugar.

So we were hopeful that being really serious would get the numbers down.  But it did not.  Jon walks a lot in his job, all over the prison campus, as well as exercises about two hours a day on his days off.  He also exercises on work days at lunch most days.  In spite of that, the cholesterol won't budge.

Recently I found a hard core book about changing your eating habits for life

 

This doctor is on staff at Cleveland Clinic, the first place to do by pass surgery.  He was sent 20 patients who were not candidates for surgery and were given no hope.  He put them on a strict diet and they lived.  The study is now 20 years old and most of those original patients are still alive.  In fact there is medical proof that their heart disease reversed itself to some degree in all of them. 

 

The rules of the diet are tough. No meat, no dairy, no added oils.  If it has a face or a Mama you don't eat it- no eggs

Here is a CNN clip

 

http://www.cnn.com/2011/HEALTH/08/19/heart.attack.proof.diet/

 

You can read Dr Esselstyn's credentials here

http://www.dresselstyn.com/site/about/about-dr-esselstyn/

 

Poor Bill Clinton has gone on this diet, that is why he lost so much weight.

 

Now Poor Yvonne has gone on this diet too.  Jon is handling it WAY better than me.  I've actually grieved the loss of much of the foods I like.  It's one thing to be a vegan and eat all the nice packaged foods but they have oils in them.  It is very hard even in the health food stores to find things without added oils, even olive oil. 

 

 

So here are the rules:

 

Caldwell Esselstyn, Jr., MD,

Prevention & Reversal Diet Work

• No meat, no poultry, no fish--not even salmon
• No dairy of any kind--not even skim milk or non-fat yogurt. 
• No eggs--not even egg whites or Egg Beaters. 
• No oil--not even virgin olive oil or canola oil
• Aim for 100% Whole Grain products. Ingredients must say, Whole Wheat, or Whole Buckwheat, Whole Rye,etc. 100% stone-ground wheat is not Whole Wheat unless the word Whole appears.  Forget about semolina flour in pasta.  Forget about white rice.  BROWN rice only.   For several years we have been eating Arnold's HealthFUL breads, there is no oil in them.
• Do not drink juice. Fruit is fine.  A little juice used to saute, or season recipes or for salad dressings is fine 
• Do not eat nuts, even walnuts unless you do not have heart disease.
• Do not eat avocados, if you have heart disease.
• Do not eat coconut, if you have heart disease.
• Eat soy products cautiously.  They are high in fat (40% +) and many are highly processed. 
• Reduce sugar as much as possible.  When you do use it for recipes, stick to the more unprocessed varieties.  But don't fool yourself, maple syrup, agave, and honey are still sugar.
• Read all labels, especially THE INGREDIENTS!!! (I have a small magnifying glass I keep in my purse)

** we are assuming that we have some heart disease so we are also not eating nuts....goodbye peanuts!  Jon has had many heart tests but outside of a heart cath we can't be sure 100%.  We don't want to chance it. 



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The doctor  is also a focus of the new documentary "Forks Over Knives." Esselstyn has won some high-profile allies -- such as Dr. T. Colin Campbell, co-author of "The China Study," and Dr. Terry Mason, chief medical officer at Cook County Hospitals in Chicago and the city's former health commissioner.


Now Dr Esselstyn does not claim this diet prevents cancer but none of the people in the study have developed cancer.  Interesting enough a friend of mine has a son with a brain tumor.  He was diagnosed four years ago with an inoperable tumor and given just months to live.  He is still alive and doing well.  His mother put him on the "China Study" diet, very much like this diet and his tumor has stabilized.  He does get chemo but there had never been the hope that chemo alone would cure him.  His doctors are now beginning to be interested in his diet!

So we have embarked on this journey.  It is much harder than anything I have ever tried before.  It's not so much a diet as a lifestyle change.  I've been shopping twice now for this adventure.  Once in Publix, where I got angry at smelling the fried chicken LOL and today in a health food store where I just got overwhelmed .....  but I came out with a no oil pizza crust and low fat tofu with no oil!  So tonight Jon and I had pizza...

 

 

It was not Papa John's or Pizza Hut but it helped me to have something tasty and filling.  I don't crave sweets, I'm a hearty meat eater so this is rough! 

 

This is a hard change but if it keeps us healthy, it's worth it!

 

We are going to have our bloodwork redone in April to see where we are at and to see if this is working for us.  We should see a change by then.  Although I'm fine where I am weight wise, there is no doubt the weight will fall off me with this change.  My doctor wanted me to lose 50 pounds which I thought was extreme.  I'm pretty sure that is 100% doable with this change!

 

Do you love to eat or do you love life?  I love life!  I want to be healthy for my kids!

 

I suggest you get the book and read the studies.  It convinced me!  The funny thing, I didn't realize my brother in law and his family also changed to a vegetarian diet.  They have chosen not to be as strict, but they've not read this book yet! It certainly made me realize the importance of what I eat.

 

BTW, the kids are staying on their regular diet for now.  Steve almost had a heart attack when I first started talking to him about this.  He is the worst eater of the family and proud of it.  I worry about him but he doesn't listen. His taste buds are like mine.  Shad is addicted to sweets in a terrible way.  Sam is a wonderful eater, for some reason he has NO desire for sweets, except for fruit, oranges being his favorite.  Sarah is a good eater too, she does love ice cream.   Thankfully when they eat at home, it's healthy.  I cooked them Shrimp Jambalaya today and made them happy.   YES it is hard to cook for them!!!!!!!  

 

So say a little prayer that I can stay on track and come up with good recipes.  Jon needs my help with this.

 

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Yesterday we took Sam and Sarah to the geneticist.  We should get some results back in the next month or so.  Both are in a study through the University of Wisconsin focusing on eye conditions, especially Peter's Anomaly. 

 

Jon and I stopped and got the kids lunch and we got a baked potato with extra chives on it.   Our first time eating out as a vegan!

 



RESPONSIBILITY

 

 

 

 

 

 

 

 

 

 

 

Yesterday we took Sam out for his birthday which will be next week.  Our favorite family restaurant is Olive Garden and Sam was happy!  They even sang to him:)    We had some errands to run and then we went by the new house.  On our way we noticed a bunch of deer in a fenced in area.  They were somewhat tame, as I got out of the van to take their picture.  I had noticed the 20 foot high chain link fence but just in passing.  In the country, some folks like lots of privacy but now I'm wondering if it is some kind of animal reserve.  

 

Well in my last blog, I got a comment I thought I'd share with you all and  then comment on.....

 

Wow so awful stuf! Well in my personal opinion I feel bad for you 2 healthy boys Steve and Shad (knowing Shad isn't 100% healthy) but any how just them 2knowing that they HAVE to take care of the siblings.... Steve has to at the end of the day marry a woman or man who is happy to care for his siblings and or Shad the same .....that is a lot for a brother.But I guess you and Pastor John have it all the played out. Me personally I would NEVER lay this pressure on ANY of my kids I have other family members ready to jump in if my handi children outlive me and Husband..... i know you mean the best or VERY best for your kids but putting the burden on the other children is not right in MY OPINION! But I don't know your entire situation ONLY what you share and from this post it seems Steve&Shad are responsible for the other children. Yes my kids know we want and wish for our 100% healthy ones too look out for the others.... but hmmmm once the husband and I pass who knows. I just know I am not MAKING/FORCING/GUILT TRIPPING any of my younger healthier ones to care for the other siblings.We have wills and and everything detailed out for our handicapped kids even if one of us gets Alzheimer's disease. So my big rant is ----i feel bad if you n Pastor John are laying the burden on your older healthier boys.That sucks for them. I know NONE of my children are not burdened by their siblings an NO they are not going into rest homes or into care of people whom don't know them.I just knew adopting children w special needs meant having a long life line.Feel bad for the families that the handicapped children have to be taken care of by siblings it never goes right. Yvonne this is my PERSONAL OPINION ONLY! Yours may better or the BEST or even CORRECT!!!!! By me aMom2three

 

 

 

I didn't think this writer was trying to be mean or ugly, she's written before but it made me want to address something to everyone on RESPONSIBILITY.  One thing I think she means is she does have a will and has someone besides her kids that would take responsibility for a child or children who are handicapped.  Well....then there is someone who would be "burdened" for the child or children's care....

 

Responsibility is not a word anyone likes anymore.  Everyone wants everything but they do not want to be responsible. 

 

That's not how my husband and I were raised, nor is that how we have raised our family.   And we weren't just raised to be responsible for just our family or loved ones but to realize we live to help others.

 

First of all let me say I went in to the bedroom where the boys were watching tv and talked to them both about this comment and asked them what they thought...  both were mad about the comment and felt like it was not a good understanding of how we think. 

 

When Sam was little, probably less than a year old, we were driving somewhere and Steve was talking about things with me.  Steve was about 9 years old at the time.  He said "Mom when you die I'll take care of Sam"  It came out unsolicited and I started bawling! 

 

As the years have gone by, we have always fought to keep a balance with Steve & Shad.  We do not want them to feel they have a "burden" to look after the little ones when we can not, however we don't look at our little ones as burdens.

 

We don't know the extent that each boy will be involved in the kids' care in the future.   Just as Jon & his brothers watch over their dad there is a difference.  Jon's oldest brother has taken most of the responsibility because his children are grown and he was able to move their dad in with them.  Jon's younger brother often stays with his dad when the other brother is on trips.  They both live in the same town, we are about an hour away from his dad.  Obviously at this point in our lives, Jon is not as involved physically in his dad's care.  He just decided to take some days off work to be with his dad on a more regular basis.  In the same way, one may be more responsible than the other. 

 

When I was a young adult, I was responsible for my great aunt.  She did go into a nursing home but was given the opportunity to come and live with us first.  She did not want to move 200 miles from her home town and her other family.  So I went up bi-weekly and checked on her, spent time with her, did any shopping whatever she needed.  It was not so "hard" to do, I didn't look at it at all like that, in fact I felt like I was not doing enough.  Of course her situation was different as she had siblings and friends that visited daily.  And she had no mental issues, she could tell us if there were any problems and she had a phone in her rom and called me just about daily.  I had to make her final arrangements and some very serious health decisions.  It taught me that you take care of family and that was something I saw growing up too. 

 

 

One thing I'm pretty sure of is that both of the boys would not marry girls who were uncomfortable with their involvement with the little ones' lives.  That is something that Steve has said over and over again.  Is that unfair?  I don't' think so, I think the way my kids have been raised and the values we've installed in them would make them look for a spouse who had deep beliefs and who was responsible and who cared for others.  Personally I think that is the kind of woman they'd want even if they didn't have siblings with special needs.

 

So to freak you all out.....Steve is named as the guardian of ALL his brothers and sisters should something happen to me and Jon.  That doesn't necessarily mean he would physically have them all in his home, but it means he would make the decisions for them. 

 

Just to make a point, let's say I win the $360 million lottery tonight....and then I put in my will that Steve gets ALL the money if Jon and I die....oh people would think that was great, lucky Steve....  however they do not look at the responsibility of taking care of human lives as "fun" or a "wonderful" thing.  We think differently.

 

When we adopted the girls, we did have a long talk with Steve, he had the same idea or thought or idea that we did and it is a bit like "in for a penny, in for a pound"   LOL  We are already in this life and our life is geared towards Sam, it's not that hard to add a couple more.  Of course we had no idea what would happen to Selah and how that would change things.

 

And that is something I think about all the time.....BAD things happen and families are called upon to step up and work through things.  No one is guaranteed an easy perfect life.  You might have one today and tomorrow be hurt in an accident or a family member hurt.  Then what do you do?  Do you step up and treat others like you'd want them to treat you if something happened to you??

 

With our kids, we have been careful to never make them feel they have to follow in their father's footsteps into ministry, or that they have to be super little Christian solders but we have also been careful to teach them to be caring people. People who see a need and then try their best to meet that need.  People who won't walk away from problems but be faithful and committed. 

 

We've never spelled out a plan for taking care of the little ones until recently we were given a great idea by one of our therapists.  That idea is that our new home, is big and handicapped accessible in all areas.  So it would be eligible to be a group home one day.  She has seen families do something similar and turn the family home into a "group home" for their handicapped child.  They would include a few more children/adults who needed the same care and hire nurses/caregivers.  Then usually someone from the family would be the one who was the director of the group home and oversaw it.  This was a way for the family to be involved and have a small business at the same time.  I was THRILLED with the idea and still am.  We all are!  Since our home is larger and has a bedroom suite that is private, it would be perfect for the director to live there if he wanted to.  If not that could be another room for a child/adult who might need it.

 

Of course we are very hopeful this is something we don't have to think about for another Thirty years or so!  We know folks in our community who are in their 80's and still very active and our goal is to be like them!!!!!   We do all we can to stay healthy and active.

 

When the day comes, if the day comes, that one or all of the little ones will need care that Jon nor I can give, I have faith in my older sons that they will be responsible with a happy heart towards their siblings.  Beyond faith in the boys, I have faith in God who will take care of all my children for me.  I believe God will work out whatever circumstances that are needed to see that the little ones are taken care of. 

 

 

 

 

 



 

 

 

 

Some Realities of our Life

WOW so the kids' IEP meeting ONLY lasted two hours!  Miracle!  We only had a few issues one was  that Sam and Sarah's Orientation and Mobility services is being overseen by a teacher who did teach them until I had her removed.  I had her removed for a myriad of reasons....bottom line she did not know how to teach blind kids who are as delayed as my two.  One thing she did was walk out to her car with Sam and then let go of his hand as she rummaged through her car.  Thankfully Steve was outside (I'd sent him to watch her) and he ran and caught Sam!  The teacher was parked right by the road!  Then a few weeks later she YELLED at Sam in a very angry way in front of me and two guys who were working on our plumbing.  After that she was gone.  Frankly I do not want her to be associated in any way with my children. 

Second there was a question about summer services for the kids.  I think that will work out.  All in all it was a good meeting and I'm so very happy with the teachers who are working with my kids.  They are all interested in really helping the kids and pleasant to be around!

We have a new nurse.  We've had one small spot that we've been trying to fill for awhile.  Our other nurses have worked extra hours and we've been covered.  We had a nurse in it but I caught her in a lie last weekend and that was that!  Luckily the agency sent someone right out who seems like she will fit in good.  I've been lucky for the most part with nurses, I have three really strong ones who are in tune with Selah and who can read her like a book.  Having nurses in your home 24/7 is not always the easiest thing but we have to have it! 

Throughout the day not only do we have two nurses who do a 12 hour shift each but we have teachers and therapists.   For example today we had the nurses,  the physical therapist, and our vision/education teacher.  We have teachers/therapists every week day except Fridays. 

Before everything happened, Sam did have a few teachers but nothing like it is now!  It took some getting used to, especially in our little house.  Sometimes our parking area looks like a used car lot LOL

We made the choice with Sam to put him on what is called "hospital/home bound" so he'd get services in the home.  When he was young he was sooooooo sickly!  Plus he had a crazy amount of eyedrops to do.  He is much healthier but I don't know how he'd be if he was in a classroom all day.  Plus he still has lots of eyedrops to do and his eye is so fragile.  If it got bumped or hit, he could go blind.  If he got an infection like "pink eye" he could lose his eye......  There is much to think about having him in a classroom setting.  If something happened to him or his eye I'd never be able to forgive myself.

Of course with Selah, it would not be good for her to go to school  She's far too fragile and it would upset her terribly.  Some families send their kids like Selah to school but often those kids end up sick.  I'm not taking any chances.

With Sarah, I think emotionally she would not handle being away from home all day.  Since the other two have to be home, there is no reason to send her and stress her out.  She went through so much emotionally in the orphanage, it's a miracle she has bonded to me like she has.  But she is BONDED and I know even when I'm gone for a few hours and come home, she is all about Mommy.  I know some folks would say send her to school, toughen her up but Sarah will ALWAYS live at home, she won't be able to hold a job down so why stress her out?  When she stresses she gets these awful rashes and she gets upset.  I figure she has had enough stress in her little life!!! 

We are putting together a plan for the kids as they grow older.....and we grow older.......
Our new home is handicapped accessible in every way.  Since we have three kids who will always need care, we could incorporate at some point (once Jon and I can no longer care for them or when we pass away) and one of the boys could make the house a small group home and add a couple of more kids/young adults to it.  Then that son or both of them could be the manager(s)   One of our therapists gave me that idea and you have no idea what comforts that brings to me.

If you ask any special needs parent their greatest fear and most of the time it is the future/outliving your child (or in our case, children) 

Having the beginning of a plan in place brings me some peace of mind.  Also a new law has passed making it legal to have savings accounts for children who are special needs.  Before it was not allowed and was counted as income against the child if the child/family applied for any type of government assistance even when the child became an adult. 

So school meetings, bad teachers, nurses, and the future are just a few of the realities of my life that most other people have no concept of.......  sometimes these are some of the hardest things! 

For us, our lives revolve around all our kids but we know one day Steve and Shad will be on their own and we are proud of them.  Our three little ones will always be with us and may out live us.  Who knows

If you've ever wondered, I have asked some doctors the children's life expectancy.  Of course no one has any real idea.  Children like Selah can live for decades if they are well taken care of and stay stable.  Sam has a lot of little oddities that worry us very much and we do all we can for him to keep him healthy He has some deletions on a chromosome which is very worrying.

 In fact we go Monday for more, newer DNA testing.  We all go, Jon and I will be tested again and compared to his DNA.  He clinically presents as having Peter's Anomaly or Peter's PLUS Anomaly BUT he does not have the chromosome markers for it.   We've all three been tested before but I guess now there is another newer more sensitive DNA test.  They will run mine and Jon's and then compare them to Sam's.  Almost everyone has some deletions in their chromosomes, so they will look at mine and Jon's and see if any match and if any matches Sam's.  Should be interesting.   I think the general idea is that Sam carries ANOTHER chromosomal marker for Peter's Anomaly, one yet to be discovered.   He sees a genetic specialist here in Florida but he is part of a HUGE study at the University of Wisconsin for kids with Peter's and other eye disorders.   In fact, they called our doctor and requested the updated testing.  The doctor called me on our way up to NY in December and I filled her in on the past four years (they've been exciting!) and she wanted to see Sarah too. 

We know Sam is missing half of a liver tumor inhibitor.  We found that out about 5 years ago and followed up on research. There is ONE doctor in Utah who is studying this and according to mouse studies Sam is safe since he has one tumor inhibitor.  If he didn't have any, he'd be almost certain to have liver cancer at some point!!!!!  Jon and I both have both inhibitors thank God.  HOWEVER when we learned this, that is when we got really serious about what we all eat, Sam in particular JUST IN CASE!!!!!  

Sarah is as healthy as a horse LOL.  She's been with us for almost three years and the only thing she's had was a runny nose/red throat one time and was put on antibodics.  I figure she survived Ukraine....what's a few puny American germs??  It will be interesting to see what the DNA will tell us about Sarah. 

Well that is probably enough of the realities of our life!!!!!!!!  And you wonder why I'm like I am......LOL

It's looking like a House!

 

WOW!  We hadn't been out to the house since last week.  Doesn't it look pretty?  All the windows and doors are in.  Most of the electric and some of the plumbing is done.  The guys were there working on the A/C.  Most of the siding is on too. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We got to meet some of the sweet guys working on the A/C and a couple from Rochester came by to see the house too. 

 

This is really exciting.  I know I say that a lot but it has been cool to watch the house come together from the plans a friend drew up with me to the actual building!  Still doesn't seem quite real yet!  The move in date is hopefully next month! 

 

 

Tomorrow is all three little ones' IEP- that is the Individualized Educational Plan.....  always something to fight about.  Maybe not as much this year but I'm sure they will try and take some service away from them   I can usually count on the good old school board to try that. 

 

One time a very spiritual special needs mom said to me "Yvonne, you can catch more flies with honey than vinegar"  I said  " Actually you can catch more flies with a dead body but who wants flies?  LOL  I don't have much time to give honey to anyone but my honeys :)

 

 

 

Until tomorrow.....

 

 

Southern Cooking Made Easy!

Today I've been boiling peanuts.  If you're not from the South you may not have ever enjoyed this wonderful treat.  In fact you may have never seen a raw peanut before!  Don't worry Raw Peanuts are not bloody!  In fact they could be eaten raw but since they grow under ground, it's best to boil or bake them first. 

It's really easy.  Just put them in a big pot with lots of water...... BOIL them for hours keep adding water and salt.  After about 30 minutes, turn it into a slow boil, then after about 6 hours or so, try one.  If it tastes good, then drain them and start shelling! 

 

So tonight we will be enjoying boiled peanuts as we watch tv.  YUM!

 

Hope you all have a great week!

 

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