Wednesday, May 16, 2018

Mother's Day 2018

Hello from the Clanton family!
I am still fighting with this new MAC....I absolutely hate it with my whole heart.  It's such a pain in so many ways.  Tonight, with help, I figured out how to put pictures on my blog.  Not at all easy if you are wondering...way too many steps for me.

We've been busy as usual around here!
All four of the younger ones just went to a new dentist who specializes in kids with special needs.  It took me years to get in with this dentist and I am thrilled.  We were in a practice that would not even see Selah and really resented me making them see Sam and Sarah.  I got a little crazy with a dentist once LOL . If you ever read that I"m in jail- please take it seriously-it'll probably be true!!!!

Sam Sarah and Selah had perfect teeth!  No cavities or much build up.  This dentist just blessed us so much by actually telling us "thank you" for giving them such good care.  I was almost in tears.  As a parent of special needs kids, there are so many things you do that no one really sees or thinks about.  Brushing teeth is one of those things.  It's a pain, neither Sam or Sarah can spit so it's alot of work to really clean their teeth.  The nurses work on Selah's mouth care continuously because having a trach, she keeps her mouth slightly open all the time which is awful for her teeth  and gums!   But to have a doctor pat you on the back like he did, made it all worth while.  He told us some horror stories of special needs kids he had seen over the years and that makes him appreciate the ones who do what has to be done daily to avoid issues.  Jon and I along with her nurse felt very encouraged by the kind words of that man.

Having to do all of their personal care is taxing now as they are getting older and bigger.  It's challenging to be out with them and have to change a diaper.  We have to brush their teeth, give them baths, change diapers, dress them, feed them....   when I get physically tired, I always push through because I think "what if our roles were reversed?",   I'd want good care by a cheerful person.   With our nurses and our respite care worker - they are the same- they care about the kids and want to do the best for them.  

Sam and Sarah have started horse therapy.  Their teacher is a Physical Therapist which is wonderful.  Sarah is going twice a week and Sam goes once a week.  We are concentrating on Sarah in the hopes that it will help her to walk.  

Let me see if I can explain why hippo therapy is so important for a child with gross motor skill delays....    Sarah can "walk" .  I can hold her hands and she will move her feet but they tend to cross and turn.  She can also hold a walker and do the same.   Some time ago I felt that that kind of therapy - trying to teach her to walk- was really just reinforcing terrible walking habits that did not lead her to really walking.  Oh I went along with therapy because I didn't really know what else to do.  I hoped it would help but she never really progressed past a certain point.  I had thought of hippo therapy but did not have any contacts or way to get it paid for because our insurance would not cover it.  Then the little ones became eligible for the Gardiner Scholarship (a Florida based scholarship for homeschooled kids with handicaps)   It covers their therapy.  

Now to try and explain why this type of therapy is different....  basically a horse's movement mimics the way humans walk.  So by Sarah sitting on a horse as it walk, that horse is moving Sarah in the exact way she is supposed to move to walk correctly.  It's causing her to react neurologically and physically in a way that using a walker absolutely never ever would.   Especially since she is blind, she can "feel" it even though she can not see it.  

Sarah is very unique.  She has absolutely no cerebral palsy or brain damage.  Sam has both yet he can walk.  Sarah just has a low IQ and is blind.  That's chromosomal  abnormalities either unlike Sam.  Most professionals are stunned that Sarah can not walk but all attributed it to her first five years of being in an orphanage.  We don't know how she was treated in the baby house but she was in an adult mental institution when we got to her and was kept tied to a bed by three little leather straps.....  Nothing was being done to help her learn and she missed many important milestone times of brain development.  

Sam on the other hand has CP, brain damage and chromosomal abnormalities and yet he can walk.  But he had therapy from the beginning and a family working hard with him.    We are hoping that Sarah will catch up.  She loves physical activity.  She absolutely loves being on the horse, she smiles almost the whole time.  

This will also be good for Sam in many ways.  Although he walks, this will give him more confidence plus it's supervised PE (physical education) . It will address his poor posture and tone.  Also he will learn how to follow directions and so many other things.  

Ive recently heard of a new therapy place in our area for OT and Speech.  We are also on the wait list for ABA therapy (Applied Behavior Therapy).  I'm always looking for things to enrich their lives.

That smile!

She looks like a little horsewoman!

They love the movement but not the horse.  Neither of them really care about touching the horse except for the signal "to go" .  My kids are anti animal LOL  Both of them despise the new rescue kitten.  The kitten loves everyone and wants to go to Sarah all the time.  Sarah flinches and pulls away.  The kitten is so tiny we have to really watch it around the kids, we are afraid one of them will accidentally hurt it.  We try and keep it in Shad's room but that kitten has a set of lungs on it!  It cries and cries.  

Sleepy Sarah

This is how my big girl sleeps on my lap :)

Last week was SIX years home for the girls!
This picture was taken at Tampa International Airport on 5/9/12
Sarah was wearing a size 12 months and weighed 19 pounds at 5.5 years old

This picture was taken in our living room on 5/9/18
Sarah is wearing a size 12 girls and weighs 70 pounds!  
6 years made a big difference!!
(Yes she got a hair cut today!!!)

Mother's Day 2018
I feel so blessed!
I love this bunch

My Life.... I love them!

Next week Steve leaves for Haiti!  Please pray for him and his team.  Thank you all for your gifts to him!  We were shocked this past Sunday by a large gift given to both of the boys for their mission trips from a reader in Orlando!  THANK YOU!  They were amazed & encouraged.  
Steve is also taking a ton of supplies for the orphanage with him . We have to work on his luggage tomorrow and see how we will fit it all in.  I'm lucky I have a friend who is a Crazy coupon lady!  she gets me great deals for my various projects.  This time we focused on vitamins, toothpaste, band aids and bar soap.  It is a great feeling for me to get things together for the children.  

As a mom-it makes me extremely nervous for him to fly to another country without us!  But I know this experience will be defining for him and also for Shad when he goes to Miami for a week and El Salvador for a week this summer.    But it's hard for Mama!

Sam enjoying his lunch!

We've had alot of concerns about Sam this whole year.  It started in January when he got a light case of the flu.  Since he had had his flu shot- he didn't get really sick but with in a few days his bowels shut down.  That ended up in two trips to the hospital and a stay plus several trips to the doctor.  He also had a very serious issue with his immune system.   Despite our best efforts, he has continued to have some issues.   

He also struggles a few times a year with extreme bouts of sadness.  During those times he will bit his hands and arms.  He went through a terrible time of it back in April.  It follows a predictable pattern-there is no rhyme or reason why it happens or what causes him to come out of it.  

A few weeks ago he began coming out of it and we were relieved.  Then he went into such a lethargic stage that I was convinced that he was dying.  He had absolutely no other symptoms- and i called our pediatrician several times to let him know what was going on.  It was so scary.  He was still eating and drinking but almost like a robot.  Nothing made him happy or even sad!  He'd just sit beside one of us without interacting.  

I tell you what on Mother's Day I woke up with him in my bed, I was afraid for him to be alone, and I could have cried.  I took a shower and had to hold in my tears because i was so concerned about him.  But there was NO symptoms we could point to....  his bloodwork was perfect, just a few weeks ago cardiology had cleared him and said they no longer needed to follow him, he had just had a multi organ ultrasound study and everything was perfect.... The only thing was he still was not 100% normal in his bowel movements but it wasn't terrible just not normal since he got sick in January.  Our pediatrician had put him back on a stool softener and a vegetable based laxative but there were occasions I had to give him enemas.  Sam eats a very healthy diet and loves vegetables- any type of bean is his friend so he's never had this issue before!  

Anyhow we all got ready for church.  I asked for Sam to be mentioned in prayer.  My husband prayed for Sam with the other requests of our parishioners.  But as the prayer ended a friend of mine spoke up and said that she felt we should have special prayer for Sam.  The church came around Sam and prayed for him.  And with God as my witness, Sam began to act more like himself from that point on....    We went out to eat and he was interacting with us.  It's Tuesday night and he is in bed but these last few days have been wonderful.  He's back 90% to the old Sam!  We are all paying alot of attention to him and he has his big brother home so I know that helps but I truly believe God heard the prayers for him and gave me a Mother's Day present by helping Sam to reconnect more with us, his toys and to find joy again.  Please keep him in your prayers!  

Parenting our little ones has its challenges that just break our hearts at times.  Before my little ones, I knew that "this world was not my home- I'm only passing by" but now the Hope of Heaven has so much more meaning to me as we face challenges along with our children.    I am honored that God has given them to us by birth and adoption to be with them through their lives and to see that they are cared for and loved.  

I wish I could be some positive idiot that never worried about the future but it is scary to me.  I pray alot.  We have things set up as best we could and I'm thankful that we were able to have some things in place for them.  But there is only so much we can do now for the future for them.  There is just alot of having to trust God for their futures....and for our older boys' futures too.  Don't you wish you could protect your kids from everything and make all the important decisions for them?  It doesn't quite work out that way....

Well I will try and continue to learn this $#@%&!! MAC!  I dread dealing with it!