A Full Day

Doing HBOT is so time consuming and takes your full concentration.  Selah has an appointment each morning at 10:30- 11:45 am then back again at 2-3:15pm.  When you count the travel time in, then that's your whole day basically.  This being Sunday made it even more hectic if possible.  Before we left, I realized that the church hadn't been cleaned!   Scrambled to do that and get the little ones baths so they'd look pretty:)  Jon does a service at the prison so he is already gone by 8 am.  Oh well, the church got cleaned and the little ones got baths:)  So we get one session done and I get back in time to hear the final song at church and say hi to everyone.  Then we ran out for a bite to eat, and then I ran back to pick up Selah and our nurse for round two.  I get them dropped off and go back to the restaurant to sit with everyone for awhile. 

Then before we left HBOT a family visiting from France who has a daughter with Peter's Anomaly came by to see us.  They followed me home so they could meet Sarah and Sam.  I feel in love with their precious sweet tiny daughter.  OH my!  What a doll she is!!!!   They are believers and the husband is a minister.  He sweetly prayed for my little ones and Selah too.  His sweet little girl came in and I was holding her and she asked me if my baby was sleeping and I told her yes she was but her daddy was praying that my baby would wake up....oh sweet!



This princess is amazing.  She has Peter's Plus like my two little ones, and yet she speaks and has great understanding.  She just stole my heart today!

 

 



One neat thing about the journey we have been on, is the wonderful folks we've met along the way.  People we probably wouldn't have met if we weren't on similar journeys! 

 

Well it's been a long day, the Chinese food order is called in and Jon's off to get it.  The Spanish church is meeting and I can here them singing.....

 

Good night all....please keep praying for Selah.  We are doing all we can, pray that God will use this HBOT to heal her brain and "wake up my baby"! 

 

 



 

Animals

Got up with great resolve to go walking while Selah was in HBOT RATHER than eating Dunking Donuts.... Well I walked THREE miles,  problem was I had Steve with me....ended up going to get an iceie  (frozen coke for you non Southern folks)  and a hamburger and onion rings.....see having KIDS will make you FAT!  LOL  I did have a small size of everything AND I did walk 3 miles. 

Then we brought her back home and my boys went to do yard work (without being asked to do so- something is UP with that!)   I'm sitting with Sarah and Jon was feeding Sam a hamburger when Shad runs in screaming "there's a cottonmouth!"   We ran outside left the little ones, sure enough there was a snake trying to climb up our big palm tree.  Steve said he was looking at two huge frogs who were on the palm tree and something fell down right beside him.  It was the snake, evidently it was looking at the frogs too!  ( BTW, when we came back inside after all the excitement, we found Sam had fed himself the hamburger we were laughing so hard!  We've been working on him feeding himself!)) 

We absolutely HATE to kill something if it's not poisonous.   So we are messing around with the snake, Steve is trying to look it up on his phone to figure out what kind it was....and the snake got away.  It was hitting at our shovel but most snakes strike when scared.  We think it was harmless or maybe a cotton mouth....I do think they like palm trees LOL!

This happened yesterday too.  Steve and Shad were taking the little ones out to the swing set and they came running back in and said there was a snake out there.  It look just like a rattler but with no rattles.  I think it was a bull snake and I let it go across the road. 

I know I'll get comments on how awful snakes are, but they are not, they keep down the rodents and non poisonous  snakes kill poisonous snakes.  We have a HUGE black snake which is aggressive but not poisonous that lives over by the graveyard.  We leave it alone because we know it won't hurt anyone and will kill bad snakes.  I like snakes, actually I like pretty much all animals with the exceptions of some insects like wasps, mosquitoes, and flies.   I LOVE GATORS!  See me wrestling this poor little gator at Gatorland back in 2011.  Actually I was afraid I'd hurt him he was so little LOL 

 

I've always loved animals, had a ton of them growing up.  We raised chickens and pigs mostly but some cattle a few times and ducks, and rabbits too.  Since I grew up I mostly just had cats and in recent years dogs too.  But we are way down on the cats since whatever got them, gave one dog away and one is very old.....  I think my animal days are getting over.  I still love animals BUT something clicked in me over the years as I see animals taken better care of than children.....

 

 

I've always fed and took our animals to the vet, a low cost one (mostly to make sure to get them "fixed" so we wouldn't have more animals)  but I never dressed them or spent lavish amounts of money on them.  I just couldn't even years ago.  Now to see stores devoted to animal care turns my stomach to be honest.  Even the commercials to stop pet abuse....I don't ever want to see an animal hurt, abused or starved BUT I'm alot more concerned about humans made in God's image than I am about animals! 

 

Not to be condemning but I really really wonder what God thinks of us spending millions of dollars on our animals and not giving much towards missions or towards human needs?  I'll be the first to be kind to animal, or stop and help a turtle off the road but .....

 

After we came home from Ukraine is when all our cats started disappearing.  I hate that anything happened to them, but I couldn't really "grieve" them after having just been exposed to so much human suffering.  I've had a cat (Bubba) who weighed more than my new 5.5 year old daughter.....  puts things into perspective doesn't it?  

 

 

I wonder what would happen if we Christians saved and gave to save an orphan.  I wonder what this world would look like if we- the ones who profess to know Christ- Put our money where our mouth was....and instead of trying to "believe God" for a bigger house, or new jewelry, we would remember our treasure is in heaven where there are mansions and streets of gold.... 

 

I don't believe in a "pauper mentality" that all Christians should take a vow of poverty.....but we don't have to worry about that teaching going through the Christian world today LOL sadly.....  I think some churches need to take a "vow of poverty".  I really have to wonder WHY we need  churches that costs millions .....  I'm not against having a nice clean church, not all BUT I also don't believe that a church should be a status symbol either!   And they do become status symbols.  I'm not against big churches at all.    A big building can be built and made into a nice place without spending so much money that could be used elsewhere. 

 

 

Guess I'm thinking today that one day we will all have to answer to how we spent our time, our talents and our treasures.....  

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Selah had a better night.  She went to sleep at 5pm and slept till 3am then her heart rate went up quite a bit.  Her nurse gave her some valium and she was able to go back to sleep.  They looked at her ears this morning and the redness in one ear is less.  We had put some over the counter remedies in there and I guess it helped!

Please keep her in prayer.  We are on day 9..... still not seeing anything new.  Jon took her this afternoon to HBOT.    He just got back and did say she was moving around a bit more than usual in the chamber.  thank you for your prayers!

Feeling Low

Last night Selah had a rough night.  She didn't sleep any and her heart rates were up.  Thankfully we had nursing or I'd be falling out today!  We are hoping this is just an anomaly.  Every now and then  she has a funky night and nothing comes out of it.  We are hoping for that!  She has no other symptoms.    When we took her to HBOT, they checked her ears and one ear was a bit red.  I called our pediatrician but since she has no fever and no real symptoms he wasn't too concerned.  I have to take the restlessness with a grain of salt as she has that ever now and then for no apparent reason.    Steve and I went to Dunking Donuts and a couple of cake donuts with chocolate  icing made me feel a little better. 

 

 

Then we went by the pharmacy and got all kinds of remedies for the ears.  She seems to have a lot of wax build up too. So we got it all to see if anything would help.  the director seemed to think the wax is so much it might be making her ears uncomfortable when she has a HBOT treatment.  She never makes a face and she will do that if anything hurts or annoys her.

 

 

Then it was time for Jon to take her for her afternoon HBOT and the little kids went out to swing. 

Sam LOVES to listen to Steve's phone or Ipod.  He loves all kinds of Christian music but adores RAP!  LOL!   Lecrea is his favorite and  mine too! 

 

 

 

 

 

 

 

These pictures were taken last night....

Sam was trying to "help" Sarah....right off the horse LOL

 

 

 

 

 

Is this adorable or what?  Look at that mischievous smile. 

 

Don't worry he was redirected to play on his car!  Sarah was the ruling princess. 

 

 

 

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Today I just feel so low.  I read a bit about HBOT and all kinds of claims that some families have made.  I want that for Selah.  It just makes me mad and upset not to see any change in her!  I MISS Selah!  I want her back.  I'm thankful for little changes and stableness but I want her back to me.  For whatever reason today is very hard for me.  All I can say is we are putting one foot in front of the other and doing everything humanly possible for her.  There is nothing else we can do , she is too unstable and we have too much sense to take her to Timbuktoo for stem cell injections....   We've done everything that anyone has suggested (within reason of course!) 

 

But we are still going forward.  If she gets no better, it will not be because we haven't tried everything we could for her.  Yes she is still on fish oil, if you are wondering.  She still smells like the Little Mermaid.  We will do whatever we can to help her.  And we will always take care of her to the best of our ability.  I just want to see some changes!

 

Today it seems the heavens are brass to me.  I've called out to God so many times, sometimes in my sleep or just awake state to heal Selah.  I've asked Him not to leave her like this, for this NOT to be the end of the story.  This can't be IT!

 

Please keep praying for Selah. 

 

 

I'm Thankful

Whew I went to bed at 10 pm last night and still am tired!  I got up early and took Shad with me to the grocery store.  Shad has the next few days off from school (teacher days and Veteran's  Day).   I am a PUBLIX girl and that's where I buy my "real" food from.  So he was pushing the buggy for me and asked "if he looked like a grownup"  he seemed to think the lady at Walmart thought he was a grown up LOL.  He likes to go shopping with me cuz he usually ends up with a treat if it's just him and me:)  And he got one or two treats:)

Our nurse took Selah to HBOT once I got home and the little ones had PT.  Selah got home in time for her PT before turning around and going back to HBOT.  The PT got her very stretched out, great range of motion. 

Selah pooped BIG last night on her own with no medicine:)  Her night nurse was very happy and I am too!!!   We talk about poop a lot around here, for the most part I do not put that discussion on my blog LOL  But this is a cause for celebration!

Today is day 7 of HBOT and we still haven't seen anything "different".  Please keep praying for her.  We'd love to see some good change!  And I know you all would too!  Thanks for all your concern and prayers!

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You know I'm reading all the "Thanksgiving posts" on FB this time of year.  I have a few very sarcastic friends and one of them posted this picture.....

 

I just thought that was too funny.  Didn't really think it might offend anyone,(probably cause not too much offends me)  but when I went to save the picture I saw there was a huge debate going on with the original poster of this picture.  I still think it's funny.  In my group of friends, I've noticed the ones who are writing something that they are thankful for everyday of this month are generally the ones who are thankful all year long:) 

 

 

In spite of our circumstances, I am still thankful for the life I have, my children, my husband, our church, our friends, our home.....  I wrote on here, soon after the accident that I didn't think I'd ever be truly deep down happy again...ever....  and I'm not.  Even on the BEST days, there is a corner of my heart that is so sad, that I could cry if I didn't control myself.....but I am content and have joy. 

 

Joy is different than happiness.  Happiness is based on what is going on around you or happening to you.  There is nothing in this world that could happen to me, including winning the biggest lottery in the world, that would truly make me 100% happy again as long as Selah is still not healed.  Oh I could have fun and laugh but there will always be a part of my heart that would be sad.

 

Joy is deeper than happiness.  For me, Joy is something deep down that doesn't change due to my circumstances.  It's what there in the morning when I wake up and memories sweep over me.  It helps me to remember this world is not our home. 

 

God has really helped me to deal with anxiety, it's been almost 2 months since I've had to take a pill to ward off an anxiety attack,   Those attacks were pretty regular for awhile.  I have no pride in saying that GOD has helped me.  Living the life I live, I get through it with God's help.  And I don't just live to "get through it"   I'm a mom to 4 other kids.  I don't want them to remember me as someone who was so devastated by life that I couldn't love them with all my heart and have fun!   We still have fun.  We laugh a lot, we enjoy things together.....but there is always a missing piece.  That will never change

 

Having a child that has been so injured and changed by an accident is not something anyone prepares for or thinks about going through.  To say "it's hard" would be the grossest understatement of the year!  There is really no way of adequate explaining that nor the past year of my life.  I'm surprised I'm still standing to be quite honest. 

 

I'm not a super Christian,  but God has given me the grace to live through this past year and three months.  When I look ahead, the road looks very hard.  When I look back, the road looks awful and dark.  I have not been able to go back and read any of my blogs, ever....I also can not handle looking at the pictures from the accident time through the time we got home last January.  It's like I want to forget those 6 months.  Occasionally some of the pictures will come up on my computer background and even the nice pictures are like a dagger in my heart.  There are things I don't even remember, sometimes someone will mention something and I have no memory of it at all.  I was just literally putting one foot in front of the other for months. 

 

But God was with me and He still is and I'm thankful.  

Running

Sarah and Selah had appointments with GI (gastro) that had been scheduled for awhile so Selah didn't go to HBOT this morning.  We took the girls to Lakeland.  Our GI doctor has offices all over.  Usually in Lakeland, we don't have to wait very long, NOT today....we waited and waited....  Finally got in....we had a lot to discuss for both girls.  I'll start with Sarah.

When we got home from Ukraine, Sarah weighed only 19 pounds, she was 5.5 years old, a little bag of bones.  We got home at midnight and had her to the doctor at 9 am this next morning.  He ran all the usual tests and we began setting up all the specialists for her to see.  All the basic tests were actually ok, despite her obvious malnourishment.  She had a terrible vitamin D defiency   from never getting out in the sun.  So we set up all her specialists appointments for September thinking we'd be home from NY by then.  Well we know how that went....   So today I finally got her into see GI.  Sarah has DOUBLED her weight since coming home, she is 40 pounds:)   Still very small for a girl who is almost 7 years old but much bigger than when we got her.  Sarah is the "Poop Queen" she poops 4 to 5 times a day, very loose and very stinky.  She has a lot of gas both ways.....  so we've worried about her but she is never sick and has gained plenty of weight.  She also eats everything pureed.  The doctor is doing some tests on her and has put her on an antibodic, just to clear out her GI tract in case something is lurking from Ukraine.  Sarah has always had a smell to her, it's not unpleasant but it is different-sort of a sweet smell.  But she has no issues with her sugar.  It's her skin that smells.   I've mentioned it to doctors here and there but no one has been too worried.  The GI doc is not too worried either as she has been so very healthy but did mention some metabolic disorders that we can test for.  Stuff like that scares me.  We are starting with some of these tests and the medicine and then will go from there with things.

Selah is doing great with GI, she has lost some weight since we changed formula but it's ok.,  We weren't worried about it, the pedisure made her very puffy.  We've had all kinds of issues getting some supplies and her formula.  He wrote out orders for everything we need so hopefully it will all get straighten out.

 Then we drove back home, dropped off food for Steve and Sam and dropped off Sarah and took Selah to HBOT.  I got her set in there and went and picked up Shad.  I got back with him and it was time to take Selah home.....

I got home, put together a casserole and am doing this blog before I fall asleep!!!!!!  What a busy day!

Yes I have vague memories of the days before we had kids....very very vague memories.....


Selah will make up this morning's session and have an extra morning of HBOT at the end.  We normally wouldn't miss but we really had to get in and have all her stuff straightened out and Sarah needed to see the doctor too.

So friends I am really tired tonight.  Thank you all for your prayers.  Thank you for your emails and comments on here.  I really LOVE hearing from you!!!!!!

My Day

This time change is GREAT! The clock wasn't changed in my room so I jumped up frantic at 8:50 (really 7:50 am) this morning because the PT would be here in 10 minutes and the kids weren't up! Well since she doesn't come till 9am we were GOOD! Got the kids up, changed, breakfasted, put chili in the crock pot for tonight, got myself all ready....all before 9 am:) I think I'll leave the clocks alone LOL

Then we had a little scare with Selah.  Our nurse took her to HBOT but was back in just a few minutes, her "mickey" gtube had come out!  Ever so often the balloon inside breaks.  Either it reacts to the fish oil or we just got a batch of bad ones.  So then he left again with her.  She still got all her therapy time in.  Our weekday nurse is able to take her for me in the mornings which really helps out.  Friday-Sunday we have go with the nurse to help transport her.  I really appreciate our day nurse for taking her by himself, it really frees me up!  I go in the afternoons.

We haven't seen anything new with Selah but we are still waiting.

I should share that last weekend, before she started HBOT on Friday she went poop with no medicine!  And has been pooping ever since on her own!  We are all very happy about that!  I don't think it had anything to do with HBOT since she started the early morning before she went in for her first treatment but boy are we proud of her!   There had been a little talk about wondering if her gut was somewhat shutting down some....  Glad that doesn't seem to be the case!

Please keep her in prayer!!!!


Today after school Shad and I went to Walmart.  It was "big" purchase trip meaning all the big things, the waters, the dog food, cat food, big bags (40 pound) of salt for our water treatment (if you have well water you understand) paper towels, toilet paper. and baby wipes (we buy the big boxes LOL) and paper plates and bowls.  We had 2 buggies when we got to the cashier, I got there first and helped move Shad's buggy behind me.    A lady was coming up as I was doing this.  This lady asked me in an odd way if he was with me or waiting for his mother.  You know I understand he is Asian but that really ticked me off.  I told her quite sharply that I WAS his mother.  Shad starts snickering...    THEN she asked if she could go ahead, granted we did have 2 buggies but they were big things and a quick scan, she on the other hand had a buggy filled with all kinds of things.  I told her NO.    I'm sure someone will think I'm just a witch but I felt slightly insulted and I was quite tired because I wore heels with my jeans and just did not feel like being nice!!!!  She grumbled and walked off.   Everyone around me started laughing....at least that made me feel better and not like I was acting too much like a witch.  The guy ahead of me turned and just shook his head at her and then said "the nerve of some people"  That made me feel like better although right then I just didn't care too much. 

WOW have I been really honest in my last couple of posts....and yet no mean responses LOL! When I am open about something we are currently dealing with like Sam's self hurting/anxiety or my issue with Steve's game systems, I feel really really vulnerable.  It's not so bad when I share something that happened years ago....but something that is not resolved is harder for me to share about.  Thanks for being nice :) 

I'm still in amazement DAILY as I see all the hits this blog gets.....I just don't understand WHY people read it.  I'm really grateful just amazed that anyone ever comes back:)   LOL   I know I don't get 2000 NEW people every day so I have to assume that many people come back daily and read it.   I average between 2,000 and 3,000 hits a day....  It blows me away!    Actually it scares me some too!  When I read over my blog posts, I wonder what people think about what I share.  My fear is I am such a train wreck that people just can't help coming back to see what new stupid thing I wrote LOL!!!!     I  do LOVE getting emails and messages from you guys.   Please feel free to email me.  I respond to each email. 


I've talked here about The Shepherd Crook Ministry .  They had a listing for Shad back when we adopted him.  they list, fund raise and advocate for special needs kids who are harder to find families for.  It's led by Scott and Kathy Rosenow who just inspire me daily!

Here is a picture of them with their family that are still at home.  Scott's the tall guy and Kathy is right beside him in orange.  Most of their younger kids are adopted, several with special needs.  They have older children who are married and carrying on their family's tradition by adopting.  It is a beautiful thing!




Well they made an announcement today....you can read it here....  http://us5.campaign-archive2.com/?u=f14884e6c88d4b68239654ec5&id=fba2e06953&e=9c7b6bfa20     they are adopting AGAIN....Below is the picture of the lucky little girl who will be joining their family!

 

"who me?"

 

 

 

she has many medical needs and will need a lot of care

 

If you could give towards this adoption, it would be a great thing.  You can look at their link and it will tell you how to be able to give to be a part of this.

 

 

I know I bring up many situations where you can be a part of things by giving.   I LOVE to give towards adoption, just to be a part of a child finding a family is a great feeling!  And I really do think you will have a reward in heaven for giving towards adoption of special needs kids or any kid....  I guess having walked into orphanages and seen all I have seen,  I KNOW God does not want those children to live and die like that... Just heard today of a baby passing away, with no medical care....so sad.   So go to their link and think/pray about giving to this wonderful family!!!  They cared about Shad many years ago and fought to see that he had a family.....  I appreciate that very much!

 

 

 

 

Challenges of parenting!

So I have a very funny Shad story....  he was our usher on Sunday for the offering for orphans.....unbeknownst to me was his method of being an usher.   His method, I was told by my husband, who was laughing hysterically, was to stand in front of each parishioner until they gave!  We did talk to him last night about the correct gracious way to take up an offering, however we were still laughing so much about it that I'm not sure he paid us much attention!   Shad is such a funny guy:)   Love that boy! 

Our wonderful nurse took Selah this morning to HBOT so I could do paperwork and I did do some!  I FINALLY addressed the thank you cards to all the people who helped us in our insurance fight!  It was not the easiest thing to get the governor's address LOL.  I also paid bills, that is a good thing to do and on time.  I HATE paying bills, not just because it makes our bank account go down, I just hate the chore of it!  I did a bunch of calls for various things....left messages all medical, finally got one call back today. 

The kids had PT and OT today in between Selah's therapies.  Then it was time for her to go back to HBOT.  I had time to drop her off and go in for a few minutes before going to get Shad.  In those few minutes, the discussion turned to food and then to DOUGHNUTS.    I fought temptation hard but when I picked up Shad I asked his opinion and he really thought we should go and buy doughnuts!  Thank God because I was craving them so bad!   We bought a dozen and took them back to HBOT.  I didn't know if the health conscious staff would eat any....they did LOL! 

Steve is working hard on his last few books.  He wants to get a job but we told him he has to finish his books before he can get a job.  I think he will be done by Christmas or January. 

Shad made ALL A's in school, all high A's!  In just a 9 week period, he completed basically a half of year of work.  He did 5 or 6 books in each subject!   I'm very happy with his progress.  The boys use a curriculum that allows the child to work at their own pace. We'd love to see Shad finish with his curriculum early and enroll in college while still in high school.  I know he has a ways to go but it could happen!

I don't usually read too many blogs because I am afraid I will plagiarize them without meaning to do so LOL  but today I was researching something else and came across a really good blog.
http://www.smockityfrocks.com/2012/07/10-signs-your-child-might-be-spoiled-and-what-to-do-about-it.html  this lady totally cracks me up!  I read several of her posts and totally agreed with everything she said which is unusual for me LOL  This post is even better!   http://www.smockityfrocks.com/2012/06/are-your-kids-spoiled.html

Between these two posts I really started thinking.....

We expect a lot from our kids.  We hear that all the time from friends and relatives.  We expect our older boys to do chores at home and at church and to do them willingly without expecting payment or a specific reward.  We do not give allowances, we do not do rewards for them doing stuff unless you count getting pizza occasionally after a job is done as a reward.  I have told my boys that they are "working for God" when they do work at the church and that they will get their rewards in eternity LOL    Now we do fun things as a family and they get to do special things individually too at times BUT we don't usually give them the idea it is a "payback" for some specific job.  We feel like kids need to learn to work and that it is a part of life.  It's just good to learn to do things without feeling like they need to have a reward.


Recently Steve somewhat kidded around about the things he had done to help me that morning.....he changed both kids and fed them breakfast.  I told him that he should read "Little House on the Prairie"  and read how the young girls worked in the fields daily and then come and tell me about all he had done LOL!  That shut him up! 

Well months and months ago, Steve started pestering us for a specific new game system that is coming out.  I do truly HATE any type of video game and feel they are all spawns of Satan.... not because they are so evil (our kids don't get evil games) but the video games SUCK out the brains of children and teens....just suck them out and take them to outer space! 

Anyhow I gave in to him.....He has been such a great help this past year to us.  So I ordered this system and immediately regretted it!  But it was so complicated, I could not figure out how to cancel the order.  It's not that I don't appreciate my son, I really really do.  But I don't think this was the best way to show appreciation!   And I HATE anything to do with video games! 

He thinks it is the best way for us to show our appreciation to him......

Such a dilemma, after I read this blog I automatically felt like a bad mother!  I really don't want my kids to get an entitlement mindset!  

I'm still not in a happy place with this whole thing....I don't like to do things where I don't feel peace about it.  On one hand of course I love making my kids happy....but on the other hand, I don't want them to get their brains sucked out anymore than they are have had LOL!  Plus it was more expensive than I anticipated, of course Steve had an answer for that too since we didn't do much of a Christmas the last two years and he didn't complain at all.  We didn't do anything much  for his birthday last year so he succeeded in making me think this was a 2 Christmas and 2 birthday presents combined!   Let me tell you, he is good....

UGH!!!!   I'm not happy with myself!  This blog really made me think. Take the time to read it.

I am thankful, I think we have made good choices with parenting our kids.   There are a few things that I would change if I could go back and the number one thing would be video games- there would be NONE in our home!  You have no idea but VG are the bane of my existence and I have no one to blame but ourselves!!!  I know we could still yank them and sell them all but then a small part of me thinks how much Steve and Shad enjoy them and of course I like my kids to enjoy things....but.... we set limits with them and they are pretty compliant.  So this is the dilemma, that I'm still going through.  I like to give things to make my kids happy and be happy at the same time and I'm not!

The complications of being a parent!

The blog actually gave me some really good tips about how to get young children to sit still in church.  Sam totally loves church and sits on the front row right by the aisle so he is right in front of the pulpit.  It is unreal to see him come in and sit himself down.  He is extremely well behaved in church and actually seems to respond.   It took some years of me working with him gently. 

Sarah LOVES the music.  Since we sit on the front row, I let her twirl on the floor.  No one can really see her and she doesn't disturb anyone.  She generally will sit either in a chair or on the floor by my leg for most of the service.  However she has started doing a new thing.  She touches everything, which is good.  But she touches things by lightly hitting them.  We are working on this.  But sometimes she will hit the stage area and it picks up on the sound system.  Usually I have to take her out about mid way the sermon.  I've been taking her to the office where I can still hear and letting her play on the floor.  The blog gives the suggestion that when you take a small child out of service, don't allow any playtime or then the child will think "I'll make noise, get to go out and play"  That was a light bulb moment for me!  So now if I take Sarah out, she'll have to sit on my lap and not get down in the office.  I think she understands enough that once it doesn't become fun, she won't want to do it.  

We don't feel our little ones (Sam and Sarah and obviously Selah) should be spanked.  I don't have a problem with spankings, I think it helps to remind kids to behave but I also think the child should be fully able to understand spankings.  With them (and of course Selah too before the accident) we mostly "disciplined" them by removing them from the situation.  I have tried putting Sam in a "time out" before in his crib and all he did was fall asleep LOL.   Because of Sarah's situation, coming from where she did, with the understanding she has, I could never use" time out " for her.   That would be too much like rejection for her I believe.  With her if I say NO she does seem to understand and will stop the behavior (like the light hitting) for a few minutes at least.  It's challenging to train up special needs children with low mental understanding.    BUT I've seen some special needs adults who had NO discipline or anyone ever saying NO and they were brats and very hard to deal with.  I believe children crave order in their lives. 

Sam can be very impatient for things like food and we have catered to him probably a bit too much in the past.  He can be very demanding and we've always tried to meet his needs quickly so he didn't get upset.  It has seemed like that makes him even more demanding!

Sam has always "bit" on a finger, for years he has done this.  Then he began biting the same finger on the other hand.  We've worked with him and tried various things, mostly trying to do whatever we could NOT to frustrate him.

Well we have noticed since we came back home a newer level of frustration with him.  Now he sometimes bites the top of his one hand.  Occasionally, he has pinched himself   (he used to pinch us if he was mad)  and recently he brings both hands together and pushes on his forehead to the point he has a red spot. 

Our PT suggested more out door time and "brushing him"  I've been doing that pretty consistently for about 2 weeks now with no real change in Sam.  I set an appointment with his neurologist to talk about this.  I think Sam is dealing with anxiety and while I am not one to want to medicate myself or a child, I want to see what the doctor says about all of this.  We had talked a couple of years ago about the finger biting and the doctor basically told me to just keep him busy and keep the frustration level as low as possible, which we have done. 

I think, we may try a light anxiety medicine if the doctor thinks that is the way to go and then while he is on the meds, try really working with him to find other ways of dealing with frustration.  It is hard when your child is non verbal.   Looking at the situation, I really think we did wrong in catering to him as much as we have done.  Now if we do anything "out of schedule" he gets so upset.  he is an easy going child in many ways, but there are things that really upset him.  One thing that is hysterically funny is if anything changes the order of the church service.....one time I was sharing several prayer requests and he started making his "unhappy sound"  It was like he was saying "sit down and shut up and let daddy get on with the service!"  He did the same thing last Sunday as I was sharing about Orphan Sunday LOL  He knows the order of the service and he doesn't like that to change.  He also does NOT like if the service is late getting started.  Sometimes Jon will be a few minutes late since he does a service at the prison before our church service and Sam will get very frustrated (so does Mama LOL)  I've told our music minster to "just go ahead and start the service, Sam is mad"  LOL  it's really funny in those situations but it is something we need to work on with him.  We had tried a communication board/system before and he didn't understand it.  I think we are going to try one again and see if his level of understanding has gotten to a place where he could communicate with us.  It could be he is frustrated by not being able to communicate his wants/needs to us. 

Sarah has no behaviors like Sam does despite all the years in a mental institution! 

Again the complications and challenges  of being a parent!



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So today is day 4 of HBOT, we haven't seen any changes with Selah except she seems exhausted!  This time around the morning and afternoon sessions are much closer together and I don't think she likes it at all!  If we do it again, I'll try to get better times for her. 

 Last time it was on day 10 I think, that she started the tongue movement so we'll see what happens next week.  Please keep praying for our sweet LaLa!