Sam's Update

For about 1.5 years Sam has seemed to have issues with vertigo off & on.  We've had everything tested-traveled to NY for his eyes, seen the neurologist had Cat scan and MRI (in which he quit breathing...) Yesterday we finally got in to see a neurologist who specializes in vertigo/inner ear issues.  Unfortunately he feels Sam has  neurological deterioration based on everything.  I was so shocked at getting a basically terminal diagnosis I was pretty much speechless.  I wasn't crying or anything just shocked to my core.  The appointment was very long and the doctor did clean out a foot of ear wax out of Sam's ears.  When we finally got out to the car I was able to think and called our regular neurologist.  Thankfully he got right back to me and he doesn't agree with his colleague.  

There are more things going on than just vertigo and one thing that is concerning is nothing seems to be enjoyable to Sam except rocking in his chair and taking a car ride.  He quit playing with toys last year, he's not interested in music or tv  He doesn't want to even go outside.  When he directly interacts with us he is his normal self as far as how he acts emotionally towards us. He is not upset & has not been biting his hands thank God.  At one point he wasn't even wanting to eat or drink so we had a zillion tests ran on him but everything was perfectly normal then he started back eating and drinking normally.  

 

It makes us sad to feel like Sam is slipping away from us-that's exactly what it feels like most of the time.  But Sam is so complicated -this could be a stage he is going through.  One of his chromosomal disorders lists seasonal depression as one of it's components.  Interestingly enough Sam always has issues January-April every single year!  Usually they are medical but seem to have an emotional part to them.  Looking at FB memories today I have a post from 4 years ago that was about Sam and how he is acting more like himself after weeks of depression.  That encouraged me too.  We are hoping this is just something else besides what the specialist diagnosed it  as being.  At this point it's just a wait and see situation.  There is really nothing else to test or anything that can be done if it is neurological deterioration.  We have tested him up on side and down the other this past 1.5 years.  He's seen every specialist.  The dizziness comes and goes with him  unfortunately the disinterest is pretty constant.  However after the doctor appointment he has seemed a little more engaging.  Of course that makes us wonder about the whole ear wax thing!  He has been eating better the last week or so.  That was really worrisome when he was not interested in eating or drinking.  Sam generally loves to eat.  So keep our boy in your prayers.  

In other news everything is going good.  We are planning Sarah's "Children's Dream" vacation for August.  We picked out swimming with the dolphins in the Keys for her.  We wanted to do dolphin therapy but where we went with Sam is not open anymore.  But I know this will be great for her.  Actually the whole family is going to swim with the dolphins.  Last time I declined as I'm not a fan of animals way bigger than me in 16 feet of water!  But I think I'm going to do it this time.  Our older sons are not going to be able to go with us but our caregiver will be going and it'll be fun.  

In the next few weeks we have a SSI hearing for the little kids.  We have been fighting for them to get benefits for years.  It's insane!  This will be our 3rd hearing.  Sam is already 18 so his should be no issue but somehow it still is. People assume that we get all kinds of benefits for our 3 handicapped kids....just for the record they get nothing but med wavier!  Med Wavier is a blessing and usually people with special needs do not have Med Wavier until they are 21 years old in Florida.  But a few years ago a very sympathic worker put us on it due to the kids severity of needs.  It covers respite care and diapers which is a big help. And it has helped with Selah's charges for her group home.  But Sam and Sarah also will have another hearing regarding their respite care.  Somehow the state decided they didn't need it.  We are contesting it and trying to work around the situation.  Hopefully things will work out in our favor in both situations.  

EASTER 2022

 Our Easter weekend was full.  On Saturday Shad and I delivered Easter baskets to Selah's group home.  We had a great time putting them together for the clients and staff.  

I woke sleeping beauty up and she was not so thrilled with me LOL  She gets her little mad line in between her eyes when she is not impressed.  

One of my bestest friends - my college roommate filled in for us on the keyboard as we had some of our worship team out for medical and family emergency.  They did great and Sarah loved it even when they were practicing before church.  

I got a few pictures before church 

I love how she crosses her feet

This picture just makes my heart so happy.  So much love in this one picture.  Steve's girlfriend and two of his closest college friends who are like family.  My closest friend and my babies.  

Jon is obviously talking lol

Love these folks!

This picture....we were trying to be cute and kick out our feet like the "young girls" do....we ended up having to hold each other up!  That's the true story of our friendship!  

We were looking at old pictures.... this was ME Easter 1966 Yes I had some red hair!

30 years later Steve 1996 

Sam Easter 2004 38 years later....

You can tell we just might be kin LOL

The next pictures are Sam from 2006.  Although he was 2 years old, he was so tiny!  

Yes he only had 3 teeth breaking through at 2 years old.  He's 18 now and we are not sure all his baby teeth are out yet.  

Easter was a very good day.  Our church even had a missionary share in the service.  It was encouraging and uplifting.  I've really been struggling as we have a dear friend facing incurable cancer.  He is on my mind throughout the day and my heart is just crushed to see him have to deal with so much.  I was not in "the Easter mood" to say the least this weekend  But as we sang the old hymns of the church celebrating the resurrection I felt my heart join with the saints on earth and those already in heaven to proclaim that there is a resurrection that has happened with our Savior and one that will happen for all the saints of God.   Something about Easter roots me in my faith more than any other observance of the church.  I remember singing all those old hymns in a packed church as a child.  Many of the folks who sang with me are now in heaven and that touches my heart.  And I'm still singing those songs and teaching them to my children.  Please pray for our dear friend .  He has been our worship minister for 14.5 years and he's been a faithful part of our team. We three worked together so good all these years and we had hoped for many more years together working for the Lord at our church.   This life is not easy and I'm glad there is an eternal hope of heaven to cling to in times like these.  That knowledge is a comfort.  

Glasses, Cars, Trips to ER

This song could be for my husband & all my kids Steve made this beautiful video of Sarah. April 4th was 10 years since we met Sarah & Selah. Our story was a college friends of mine shared a blog about a family who had adopted a special needs child from Eastern Europe. I read the blog & then looked at the organization that posted pictures of orphans from all over the world who have special needs. And there was Sarah. I really can’t explain, we had absolutely 0 plans to the adopt again. We had our three boys - life was pretty good…. But that picture literally haunted me. Within days we started the process to adopt her. During the quick 4.5 months that the adoption took we decided to add another child. We heard some pretty horrific things so we wanted to do more. At first we were going to adopt a little boy along with Sarah but he got adopted (very strange story) Then we were told about Selah a few weeks before we left to get Sarah… Both girls fit into our family so perfectly once we were home. As you know just a few months later while we were in NY on a medical/vacation the accident happened. I don’t even try to understand everything- all I can do is hang on knowing that one day everything will be redeemed. Today I went & took some things to Selah & visited with her & the staff. I told her I love her & am glad she’s our daughter.

Adoption is a wonderful thing. To me it’s just like marriage, it’s a commitment. And it’s very magical. You take these people who don’t even know the other ones exists & somehow they become family- real family! It’s an amazing thing & Im so lucky to have gotten to experience it with 3 children. And experience the births of our 2 biological children. What a blessed life Ive had!

Get the tissues ready!

Sarah 10 years 

Sam has really struggled all this year.  We've been extremely worried about his actually since November.  He's had gastric issues.  He's had xray/cat scan and lots of blood work everything comes back normal but he is just "off"  He's always had constipation issues off and on although at times we find an answer but then his body doesn't respond to the various meds or concoctions after awhile.   These past few months he goes through days we have to coax him to eat or drink.  Other days he acts normal.  The past week has been rough!   He is scheduled for a barium swallow next month to check his gastro tract.  But we think alot of it more depression/anxiety.  One of his chromosomal things actually has a component of seasonal depression.  Sam has always had issues with illness/anxiety January-March....  CRAZY!  That's always when he'd get sick and have issues as well as be "off"   When the genetics doctor told me I was shocked!  WE try and give him extra time and rides in the car just to spend time with him during these days.  We hope they will pass soon this year has been really hard because of all of Sarah's problems and Selah' moving.... Sam did get new glasses that we are working with him on wearing.  So far he's doing good.  

Car #3!  In 3 months Shad totaled 2 cars....we are hoping the 3rd one is the charm!  Neither of the mishaps were Shad's fault at all!  But it is not easy to find a gently used car in this day!  Thanks to a friend we made a contact Whitestone Auto Sales in Lakeland Florida 863-686-3385  We were very relieved to find this car at a good price.  The owner is a Christian and he even prayed over the car and Shad   I thought that was so sweet.  Shad is doing great in his new job & he is loving it  We are so proud of him.  

Sarah is doing good.  I'm still very paranoid about everything that goes in her mouth since finding out how lactose intolerant she is.  I've modified all our recipes for Sarah but I have to watch out because Jon can't have anything with high fat..... so I do some separate dishes!   She has done fine so far but we are still very careful!

Selah is doing great in her group home.  She had a little scare last week when she had one of her episodes that ended up in the ER  It's not a seizure or a neuro storm....but it looks similar.  Her heart rate goes either very high or very low and her oxygen level goes low.  It's not related to any pulmonary problem although it seems like it is.  Our neurologist feels her brain stem is deteriorating.  So she got a trip to the ER.  By the time we got there everything was fine.  The doctor expects this to happen more and more frequently and she will pass away from it.  That's hard to hear but the only comfort is that most people who have had near drownings pass away long before this point from other more painful issues.  We have no timeline and she's not on hospice.  We are just continuing to love and take care of her.  

This past week I helped organize  a group of volunteers from a friend's church went to her group home and did some outside spring cleaning.  Our church provided the supplies and their church provided the man power!  Our church is doing baskets for all the residents of the group home for Easter.  I've had fun putting them together.  It's challenging because only one resident can have anything by mouth but I'm used to doing Easter baskets that are a little different.  We are also able to supply some equipment to help start a therapy room!  I'm so excited about that!!

Our oldest Steve is doing great.  There is so many great things happening in his life.  He gets to travel with his job and do what he loves which is videography.  Next week he's in Miami for the week and part f it he will be interviewing Ben Carson!  Two of his best friends are also working this conference so he is looking forward to being with them. We adore his girlfriend and are so happy to see him in love:)  Last night I was in Lakeland dropping Shad off to get his new car and Steve called me to meet them for supper.  It's fun having adult kids!  He even paid LOL

We continue to keep contact with all of our loved ones in Ukraine and now some of them are in other countries for safety.  Please pray for them.