Monday, February 29, 2016

Rare Disease Day 2016

Just a little over 12 years ago we heard the diagnosis of Peter's Anomaly.  Back in 2004 there was ONE entry on the Internet about PA.  That entry told nothing.  The National Organization for Rare Diseases had a mention of Peter's.   We occasionally were handed photocopies from various doctors' books but they were lacking in details also.  Most of the doctors including one geneticist had to ask me what Peter's Anomaly was....It was a scary time. 

Today I read this article http://www.wonderbaby.org/articles/parenting-child-rare-disease and it brought back so many memories. 

I can remember thinking "Why couldn't Sam just have Down's Syndrome?"  Then at least we'd know what to expect! 

Still there is little info on Peter's Anomaly, but much more than there used to be.  We've personally met four other families now with PA- there is a FB page/group but PA is different in every case and every child.

If you would have told me when Sam was tiny and in the NICU that one day we'd all travel to Ukraine and adopt a little girl with Peter's I would have thought that you were crazy LOL!  But that's exactly what happened! 

Sam and Sarah both have PA but are different.  Sarah was only born with one eye and it was in much worse condition than Sam's.  Her eye had many more abnormalities than Sam's does and at her best, she saw light only.  Now her retina that was "in shreds" has detected and she sees nothing. 

Sam was born with two eyes- both smaller than normal and one was very smaller.  The smaller eye has had many more issues than the other eye.  We did transplants in both eyes and the smaller eye rejected the transplant within weeks.  We did the corneal implants on both eyes and the smaller eye ceased to function some years ago, also a retinal issue.  In 2013 the implant had to be removed from that eye as it was causing him pain since the eye was shirking but the implant was not.  It was a bit unnerving to look at to be honest.  The implant would somewhat freely move around in that eye.  When the implant was taken out, most of the remaining tissue was too.  It's been challenging but his larger eye is doing great!  This year will be 9 years since he received the implant!  He sees more than light but is legally blind.

Both Sam and Sarah are handicapped intellectually. Neither really talk but they do both understand some of what we say to them- that's called receptive language.  Sam does say Mama and No and occasionally will come out with another word or two.  Both of them will verbalize sounds back and to with us.  There's been a few times we have thought Sarah has said something too. 

Sam can walk, run a little, climb up stairs, go down the slide and swing on the swing set.  Sarah walks with a lot of help.  She can't really figure out where her feet goes.  She can swing herself for hours on the swing set and loves to be outside.

Sam is very mischievous, and loves to be naughty.  But he is also a love sponge and is very attached to us.   Just think of a tiny Dennis the Menace :)

Sarah is very easy going.  She has been home for almost four years and really just started showing negative emotions in the past year or so.  She will cry now if something doesn't go her way.  But she is learning that her cries will get results and that is so good  I love that she can cry now.  The first year she was home, I can only remember her crying two times.  Oh that's convenient  but not emotionally healthy for her.  She still doesn't cry much and is a very happy girl most of the time. 

Sam got a lot of the 'extras" with Peter's, he has a heart murmur, there were concerns about his kidneys for quite a while, and he had issues with maintaining his blood sugar levels. He has some bone deformities and he is TINY.  Sam is 12 years old, he just started wearing a size 8.  But the only reason he wears an 8 is he has a round tummy- 8's are way too long on him and I have to hem everything.  Small statue is often found in kids with Peter's. 

Sarah on the other hand is healthy as a horse!  Once she started gaining weight after we adopted her (at 5.5 years old she weighed just 19 pounds)  she is catching up fast!  When we first got home, I had to put away all the clothes I'd bought her and go buy a few baby clothes.  She wore a size 12 months!  Now 4 years later she wears a size 7/8! She is built thin, like a dancer so sometimes things are too big in the waist but she's catching up there too LOL! 

Not all kids with PA have mental challenges.  We met one little girl from China who is a genius.  But overall, I think the majority have some difficulties in that area. 

I've only met one other child with PA that had more overall issues than my kids and I don't think that little girl lived. 

Now the ODD thing is neither Sam nor Sarah have the genetic marker for PA.  Both have been "clinically" diagnosed with PA which means they have the symptoms, especially Sam.  Both are enrolled in a clinical study through the University of Wisconsin.  The researchers are really interested in Sam since he has so many characteristics of Peter's but it's not in his DNA.  Last year they asked Jon and me to have more DNA testing done because the idea is that there HAS to be another marker for PA than what has been found.  They hoped to find something in our DNA but thus far nothing has come up with any of us.  We don't have the marker either so for Sam it was just a "happenchance"  Sam does have a deletion in his DNA but as far as they can tell that doesn't correspond with PA.  Sarah's DNA is completely  "normal"  as is her MRI. 

Our kids are interesting that is for sure!

So is it scary to have a child, make that two, with a rare disease?  It is but it's ok!  After 12 years, I don't really obsess about the future, at this point, we figure we will deal with whatever comes our way. 

Thursday, February 25, 2016

Rabbit's Trail.

Quick update on the children in the Philippines- I just sent a check for $5816 :)  Thank you all for your giving!  Their new family is planning on building a bedroom for the boys and a bedroom for the girls onto their house.  Of course they are dealing with several medical issues, school and supplies, clothes....  What a blessing that we were able to be a small part of this!  If any more funds come in, I will send another check to them:) 





The other morning, I took this picture of Sarah sleeping.  


 
 
Compare it to the picture I took the night we got home from Ukraine.  Sarah would sleep with her arms and legs up under her like a little turtle protecting herself.  She slept in that position for years, but now she is relaxed.  Most of the time she sleeps on her back now, which is a very vulnerable position for kids who have gone through trauma. 
Notice she has the same blanket:)   
 

I remember being so happy that night to have the girls home and all of us together under one roof.  I remember falling asleep (after traveling for two days - through three countries- three different flights-8 time zones) happier and more content than I had ever been in my whole entire life..... it's literally a snap shot memory in my brain.  





Last night's supper.....beef stew




 
Sarah's beef stew!

 
Our Magic Bullet bit the dust recently after almost 4 solid years of service to Ms Sarah!  It did it's job well!~!  BUT our new friend Nutri Ninja is amazing!!!  I feel like I went from the 1950's to the 21st century!!!!  This thing is powerful!!!!  It was only about $30 more and boy is it worth it!!  Life is soooo much easier.  It makes a difference when you use a machine several times daily,

When I went to pick out a new one, there were so many choices.  I agonized over which one to pick- I'm really not exaggerating.  Shopping tires me out mentally.  I don't hate shopping but I don't want a lot of choices LOL, it makes it too hard to pick.  In the town we live in, we have basically one department/mall like store.  I do the majority of our clothes shopping there, at least for the guys and myself.  It's just easier, not so many choices!  The only thing is they don't have nice clothes for Sarah and Selah's sizes and by nice I mean, "little girlish" not "ho" clothes.  My pet peeve is the size 7-16 girls' sizes clothes that look like adult clothes....UGH!  Anyhow......

We are looking forward to our oldest son coming home tomorrow for a week of spring break!  He is more than halfway through his second semester and loving it.  This semester he is taking 16 hours and working 18 hours a week.  He also has a girlfriend so he is a busy guy. We see him at least every other weekend and talk daily (usually) and text.  It's not been as hard as I thought it would be for him to be gone.  Last year just the thought of him leaving made my stomach lurch LOL.  But I determined I wouldn't be a helicopter mom - I actually would not let myself call or text him for the firs few days except in response to his calls or texts.  We are so happy for him with everything.  He made all A's last semester except for one high B.  He's on target for about the same this semester.  He's having a blast even though he is extremely busy.  It brings back memories of my years in college there.  Except the freshmen are so much more sophisticated  that we were!


My Freshman picture


 
 
Me working at the cafeteria making sandwiches.  It was a great way to meet guys.  I got out asked out for my first college date after I got off work one night.  We went to Disney's Night of Joy- that was a HUGE deal back then LOL  But by the next semester I was able to get transferred to the Library-at least I didn't smell like hamburgers and fries after I got off work!



Well tonight's blog was just a "rabbit's trail" all over the place wasn't it?  Have a great weekend everyone! (a Rabbit's Trail is when  a preacher is preaching and just totally goes off subject or all over the place)

Thursday, February 18, 2016

Thank You!

My view from the hammock!
 
What a beautiful day we are having here in Florida.  The kids were outside for a couple of hours today, including Selah.  It was just picture perfect!  Sam was playing hard today and surprised me by going on the slide by himself.  He also pushed himself on the swing.  He is having a "spurt" of independence and I love it.  He is feeding himself breakfast every morning- slowly- with lots of messes but it's happening.  He eats grits most mornings with an orange and he is doing a great job. Grits tend to stick to the spoon pretty good.  And if you don't know what Grits are....I'm sorry!  They are from corn and oh so good.  It's one of the first thing a real Southern baby eats:)


There are some great videos I've taken lately but I'm having issues with putting them up.  I'm going to try and get that figured out before long so I can show everyone the progress the kids are making.

GREAT NEWS!
The fund for the Philippine family has grown to $5765!  We had donations come from far like Seattle and Rochester NY (our other home town) and from Orlando, Tampa and local friends as well as folks in our church.  This has FAR surpassed what my goal was and I'm so thankful. 
Here are some recent pictures.

The kids all had to have medication for various parasites.  They all have had physicals.  Thankfully none of them tested positive for TB which is amazing! 




It was discovered after a complete physical that one of the girls needed glasses.




The missionary family has bought them all new clothes as they came with little





The youngest are finally having a chance to be kids, not just caregivers. 




So much has changed for these kids in the past year, both of their parents have died, and now they have a new family.  They are doing really good, but they've been through a lot of trauma and uncertainty. 

My personal feeling is God heard the prayers of this dying woman.  I'm a mom, and I know if I were dying, my prayers would be for my children that I was leaving behind.  This family had absolutely nothing so the mom knew only God could help.  Thankfully the pastor/missionary whose church they attended was God's answer to her prayer and we've been a part of the answer too.    I feel a bond to this mother, for a few months I was sending her a food supplement with the hopes it would help her.  I actually did not realize she was so close to death.  I'm just so thankful that we've been able to help in this situation. 

Thank you all again.  I am humbled by the trust you place in me to send funds.  I'm such a suspicious  person that I probably wouldn't give towards something if I didn't know the person -personally so thank you to the folks that don't personally know me but send in money towards Orphan Care.  I am very careful to have our church bookkeeper put the funds into the Orphan fund and by law, that fund is only used for projects like these.  Every penny goes to the project, none of it goes into the church's account for anything else.  I have a deep belief that God looks out for the orphan and I believe He sees what you all do and He will remember you for it.   And I also believe He would deal with me if I misused a penny of the money!

Recently I was talking to someone and out of the blue I said "if I could just live in an special needs orphanage somewhere and take care of kids all day- that's what I'd love to do!"  I did say I'd like some help with the diapers LOL.  But when I really think about WHAT I'd want to do with my life, that's it.....    Of course I have my children to take care of and I enjoy every minute of it.  But I had hoped we could have done something on a larger scale, but life intervened and changed our future when the accident happened.   So I put my effort into raising money for worthwhile projects, they maybe small projects in the scheme of the Christian world, none of them huge but they are huge to the ones that are helped by them.  AND you all are a part of that!  Together with the readers of this blog and folks in our church who listen to my appeals, we've helped raise money for several adoptions, dug a well in Ukraine, helped an orphanage in India, sent supplies to an orphanage in the Philippines and now are helping a family of five there!  Thank you for helping me get this done!

You can still participate by giving
Grace Church
7060 Berry Road
Zephyrhills Fl 33540
please clearly mark it ORPHAN FUND

Thank you!!!!!


Thursday, February 11, 2016

Happy 12th Birthday Sam!









Happy Birthday to our " one in a minion". Sam is actually 1 in a billion with his rare chromosomes😍. We love our little man who changed our whole life in a good way. He has taught me patience & slowed my Type A personality down. He's taught me to enjoy the little things. He taught me to lean more fully on God & to trust Him because He is trustworthy no matter what the circumstances look like. He had taught me a love that I never knew existed. I'm so thankful for the many times God spared his life when he was younger & that He gave him back to us after the accident. Sam's probably seen heaven more than anyone still alive! When I was younger I thought having a disabled child would be the worst thing that could happen to a marriage or a family.... Sam taught us it was the BEST thing that could happen to a marriage & a family! His life gave us the courage to adopt three other children & to get involved in the special needs adoption world to help orphans. His life has made a difference in so many ways!!!! I love you Sam!




 
 
He had a good day- we got to play outside for a couple of hours.  Maybe I can figure out how to save the video to my computer so I can put it on here. 
 
We got Sam a TV for his room - it's the new kind (or new to us lol) that can connect with the internet.  Sam loves watching Bro Gary from VBFA on YouTube.  Now (once Steve figures it out this weekend) he can have it in his room.  We got him a tablet, but that's a bit too small for him to see very good.  I think Sam will be very happy.   It is challenging to find things to buy our little ones for presents, they don't play with toys like other kids their ages.  Sarah still doesn't care for any toy.  Sam likes light up ones and he is in love with a horse that someone sent to him.  He holds onto the horse all the time.  Sometimes it is "hit or miss" in trying to figure out something for them.  But I'm pretty sure Sam will like this present!
 
 
It's been an amazing journey these last 12 years, we had no idea where life was going to take us, it's been an adventure. 

Tuesday, February 9, 2016

Dirty Shoes



Look at these filthy tennis shoes.  Aren't they beautiful?  They are Sarah's, a former "bed ridden" orphan from Ukraine.  Even though she is not walking on her own, she walks by holding onto us and she plays on her swing set daily.  She will swing herself for an hour at a time, stopping herself by dragging those shoes in the dirt. 

For the first 3 years that we had her, I would give away or take to a consignment store all her outgrown shoes because they looked brand new, NOT anymore I'm proud to say!   I love these dirty tennis shoes and the little girl that wears them!


Sarah is completely blind so she sometimes has a problem falling & staying asleep.  We've chosen to work with her rather than put her on drugs.  So this is what I found recently at 2 am!  She was asleep on the floor.  We check her throughout the night if one of us wakes up.  She is usually quite happy to be up and often thrilled for us to come in!  We are working on this problem by giving her as much outdoor time  and as much physical activity as possible.  It helps but it is a real problem that many blind people face. 

 
 
 
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Well it is time to start a garden.  I'm figuring out how and where the big garden will go in but I've done a few containers.  I am addicted to plants!

 
Left to Right
Christmas Cactus that I've been growing from a small piece I got from a friend. Parsley, Oregano and Lavender.   
 
 
And Shad & I have been fighting the "devil weeds" daily!  We have the absolute worse stinging weeds in our yard that I've ever seen.  There are three main kinds and they are absolutely awful- from the devil himself.  My theory is with all the tons of dirt that was brought in to build up the land since our area is prone to flooding and the sod that was brought in....there were seeds of these "devil weeds" in the dirt.  Some are so shallow that it seem they may have been in the sod itself.   They do seem to cluster together.  While they are not foreign to Florida, I've never ever seen such a growth of them as we have.  They are absolutely ferocious- and affect me awfully.  I got stung yesterday and today while removing them and it gave me chills and make me feel sick on my stomach.  Even with washing and putting cream on, I'm still feeling the effect of it.  We have the most of the front and side yards done.  We just have the back area to do that includes the whole area that stayed underwater last year which has  none of them so we are probably more than halfway done.   We have big plans for the yard this weekend that includes Steve who is going to be home- our first mowing of 2016!  LOL  All these weeds have to be gone otherwise they will spread more.  I had already tried to weed killer on them, didn't make a bit of difference.  I'm telling you they are devil weeds!
(Shad is earning money & he is doing a great job.  He is better than me, he doesn't get stung by them)



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Quick update on our family of five from the Philippines
 
 
 

 
 
 
They are doing good with their new family.  Between our church and this blog $5225 has come in to help the family!!!!  I'm so excited to be able to be involved in this.  Thank you to everyone who has given.  I truly believe God will bless you!