Day 20 and we're done:) Boost Party and new members!

Yesterday was a crazy day!!!!   The boys and I worked outside in the morning and Jon took Selah to her HBOT.  I went with her in the afternoon for her last treatment.  Now we wait and see what happens in the next 3-6 weeks.....we are praying for some changes to take place! 

Thank you for all your prayers, all the fasting that was done....  I did good for about 10 days, then I did ok....it was hard to fast.  But I'm glad we made the effort and I think you for everything that was done for Selah's sake.  We really appreciate it.

 

She was into her Baby Praise DVD

 

 

Then we rushed home so we could go to a party:)  My friend Krystal has partnered with her church St Paul's Lutheran in Lakeland to do a monthly get together for families of special needs kids. It's part of the LIFT ministry and they call the monthly meetings BOOST.   Honestly I had forgotten all about it.  I knew about and had planned on going but I've been busy.  She texted me to tell me about it and we rushed around to get us all ready!  Jon was doing visitation and I was doing the HBOT...it was crazy but we made it:)

 

I'm a funny person.  I have lots of friends and enjoy people BUT I don't' do "groups"  .  When we lost the twins we went to a group for families with losses...ONCE and I swore I'd never do anything like that again.  I don't care for women's ministry, pastor wife retreats...  Don't even ask me to go to a "marriage retreat"  OH MY GOSH  a friend went to one, and they had assignments and one was to go and have sex and then come back to the class...and I guess to "share"....   Ok that would NEVER EVER happen with me.   Not in this life time or any other one LOL!   This was a Christian marriage retreat.  I'm not comfortable when some married Christian folks on FB say things to each other that is sexual....really I am NOT at all interested in that.... and it dose not make me think you have a good marriage, it makes me think you have some issues writing stuff to each other so others can see!!!!!  

 

I was thinking about all of this last night trying to "figure" myself out...

 

What I "figured" is I don't like to be a part of anything where I am expected to act a certain way or have a certain type of experience or have a certain emotion.   I was contacted by several people in the "near drowning" community after the accident and invited to join a group on FB...I declined.  I really don't want to hear everyone else's grief.  I have enough on my own.  I felt the same way after we lost the twins...I didn't want to go back to that group, I had my own grief to deal with, I didn't' want their grief too!  And I am beyond tired of "Christian" meetings where you are expected to have some big emotional experience.....don't even get me started with that one...LOL

 

So I was really only going for my friend's sake.  This was her first group and I wanted to support her.  BUT we had a blast!  We met some great people.  No one shared any negative emotions....we weren't expected to have some big "spiritual " experience...we just went and had a great time as a family.  We danced, played games ate lots of food....we felt accepted by the group and by the volunteers...it was truly awesome!

 

St Paul Lutheran Church in Lakeland Fl is a church that is interested in reaching out to the community NOT to gain new church members...but just to be a place where families can come and feel accepted.  We met the pastor of this large church last night.  I would have never known he was the pastor (and I mean that as such a compliment!!)  , dressed in shorts, working, serving he didn't' have to say any prayers or do anything....  I hate to say it but I've met plenty of "servant leaders" who were NOT servant leaders...they were so busy trying to make sure everyone knew they were doing a little something  BUT they were still the pastor and still in control......  I was so impressed by this guy last night.  I was so impressed by the volunteers from the church too.  They made us feel welcomed without feeling weird.  So if you live in the Lakeland area, I can recommend SPL as a great loving accepting church for everything I've seen of it. 

 

We ate, then we danced.  As you see I had quite the partner.  Sam would have danced all night with me:) 

 

 

Lots of good (bad for you food-which made it good LOL) 

 

 

 

Now it's time to dance and dance we did!!!

 

 

 

 

 

 

 

 

 

my bud!

 

 

 

I love this boy:)

 

 

twirling

 

 

 

 

then Sam got tired and we danced like this.  He is too big for me to hold him for long:)

 

 

 

then Jon brought Sarah out, she loved it too.

 

 

Look at that hair going!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Daddy had to take over and twirl Sam for awhile, I thought my arm was going to fall off:)

 

 

 

 

If you could just see the joy on Sam.  We danced for about 7 songs, sat for a while and then got back up.  It was a sock hop and we loved all the old music. 

 

 

Shad loved playing Twister! 

 

After all that dancing Sam was thirsty

 

Crystal and me:)  Friends since college

 

Steve and Sarah 

 

 

 

 

 

 

 

As you can see we had such a good time.  BTW, do you see Sarah's hair....bangs...that was me!  I thought I'd "trim" them before we left....BAD IDEA!  I will be getting her hair fixed as best as we can on Monday.  Reminder to self NEVER think you can trim hair!!!!  Poor girl!

 

 

 

we finished the night, sitting around singing some sweet chorus, listening to the kids sing ( I don't have a picture of all the singers and the worship leader who was just wonderful and so sweet spirited.

 

What a great night!!! 

And if you have a family member with special needs, you all can come and be a part of it every 2nd Saturday of each month at St Paul Lutheran Church in Lakeland Fl.  Next month the theme will be Halloween and costume dress up.  Shad is really excited about that!  Sam just wants ot make sure there is food and dancing LOL!

 

 

 

We drove home in a monsoon with the most beautiful lighting.  Nothing like a great Florida thunderstorm!    But that meant our internet was out....so I went to bed early.  Got up this Sunday morning, mopped the church, and did the typing for the worship section.  We had some new songs, one that I love but can't remember the name of it.. 

 

And we welcomed new members in to our church today!!!

 

 

 

Muff and Muffet (their biker names) have a ministry to bikers.   They are a joy to have in our church and an encouragement to us!   They are a part of CMA Christian Motorcycle Association .  They reach out to bikers (and others) all across the southeast. 

 

Our church has been growing with people coming in that have the same heart as we do.  This is something we prayed and hoped for, for a looooonnnnnggggg  time LOL!   It's been such a blessing. 

 

Day 19 HBOT Yard work

I got started this morning by a 2mile walk with Steve but he had to show off so he ran it and then sat and waited for me!  Teens! 

Yesterday we did some yard work, today we did more.  I hurt all over!  We moved all the play equipment to the front of our yard.  We had put it in the back, last summer with the plan to move it when fall came. ......but of course, we weren't here.   It's not cool weather yet but it is coming.  I had to clean everything with Clorox because it had gotten green since last year.  We used it some since we've been home but not much.  Now that Sarah can walk with her walker, it's great to have it more accessible to her.  We are looking forward to some cool nights (cool to me means low 70's- its' all relative LOL)  Today I did take her out for awhile.  She craves swinging, it's called vestibular movement.  Most kids who are blind crave it.  "Children who have hypo-responsive, or low registration of movement, will seek out movement every chance they get. These are the children who are always moving, spinning, fidgeting, and hanging upside down. "  That is Sarah and Sam also.  I'm going to have to buy a bigger swing for them.  Thankfully there are swings made for kids like them who don't have enough balance to sit in a regular swing.  But they are expensive!  We've been able to get by with the toddler swings but Sam's cracked....LOL  he is just about too big.  We do work with him to use a regular swing, but he is a bit unsteady still. 

 

Everything is nice and clean. 

 

I love the elephant ears.  This year they grew wider than ever

 

 

 

 

my little corner

 

 

So looking forward to being able to be outside more.  I LOVE Florida but I can't bring my little ones out is the heat like it's been. 

 

We've worked everywhere on the yards.  Really got encouraged by a guy in our church who came and did some extra things on the yard.  Now we wanted to do all the other little pieces.  Between our yard and the church, it's about 4 acres with a grave yard.  I even cleaned grave stones this week:)  Someone once asked me if it was spooky to have a grave yard next door.  I'm such a odd person, I like it.  It's comforting to me .....  We kid around all the time about being buried there but someone told us that the county has stopped burials in smaller cemeteries.  I don't know.  The pastor who started our church is buried there and his was one of the tombstones I cleaned this weekend.  I feel it is a show of respect to care for graves. 

 

 

Selah is the same, still we are praying for some changes.  She actually got upset today after HBOT and had to have some Valium:(  Maybe it is a sign she is more aware....  I don't' know...  It seems she has a day of new things and then nothing for a few days.  Last night she was lifting her head up a lot.   But she has had some real issues with not pooping:(  She has had to have suppositories and her feeds have fiber in it.  We also give her prune juice.  Please pray she can get back on track with her pooping!   I think last night she may have been uncomfortable. 

 

Tomorrow is our last day of HBOT.....then we wait and see what the next 3 weeks will bring.  That is the time frame that we have been told that the most changes take place.  Thanks for your prayers!!!

 

 

 

Please do not forget our orphan ministry!   Remember we are raising money for blind twin girls in India that my friend and her hubby are adopting!  Shad's and my birthday is coming up next Wednesday and we'd LOVE to get checks we could send on to this family!!!   If you want to give send a check to Grace Church 7060 Berry Road Zephyrhills Fl 33540  marked ORPHAN FUND!  We have only raised $200 for this sweet family.  I'd love to see us hit at least $600!!!!!!! 

 

So if you love Shad, send a birthday wish for him by helping these girls!  And if you love or like me...do the same:)  It doesn't have to be large, if it's only $5, that helps them!  I remember how it was when we were raising money for our girls. 

 

Remember Amanda and Chet have already adopted two girls who are blind.  Amanda is trained to work with blind kids and that is where their hearts are!  That amazes me.....they didn't have a child with a vision issue like we did, to start them on this path...they totally chose it!   So let's help them out!!!!!!

 

 

Day 18 HBOT More issues with the Pasco Co School System

Nothing new to report, we are down to just 2 days, 4 more sessions to go.....still praying to see some big changes.  We were told that many children have changes within the 3 weeks following their last treatment.  Please pray with us that we see more changes then.

She was busy today as she had HBOT, Physical Therapy and then HBOT !!  I can't help but think every little bit of stimulation is doing something to her brain.  She was up in her stander for almost an hour also.  I think Selah will sleep good tonight.

I had an unusual call today.  A  social worker calling from the Pasco Co School System to set up an appointment for Sarah.  That was great but when I asked about Selah, I was given the answer that the social worker had not been given Selah's case....  Selah was also not given an evaluation when the  psychologist came last school year from the school board.  He did one with Sarah, but only went in to see Selah.   He didn't ask any questions or do any paperwork.

I have a feeling that you will be reading on this blog about another fight I will have to get into for my kids.  I think they are going to try and tell me that they will not provide services for Selah in our home.....  all I can say is "God help them"  LOL   I've been too nice in the past with the school system but now I'm tired of nonsense and their lack of effort to provide anything for my little ones. 

Today I told the social worker she could tell her supervisor that I expect services for Selah and I expect things to get started in a timely manner. 

It just makes me soooo mad that the Pasco Co School System has always fought me tooth and nail to get any type of services for Sam.  Personally I know there are good teachers in the public school system and probably some good administration..... but we have had such a negative experience in the public school system.   I just can not believe how awful it has been with the exception of one teacher. 

You know when you have conflicts in your life, you should look and see WHY there is always a problem.....well...since I have 2 other kids in the private school system and have NEVER had any issue whatsoever... it makes me think the problem doesn't lay with ME!   I think the public schools need to understand something that private schools understand....teaching is a team effort and the parents PAY the bill whether they actually hand over the check in the private school setting or whether they pay through their taxes to the public school system.  In private schools (at least the two my kids have gone to) the parents were a huge part of things.  Everything was ran orderly and everyone knew what to expect.  Teachers and administration had a "can do" attitude.   I've never felt like anyone was "against"  me or my child.  However in the public school system, that is exactly how I feel. 

Why should I even have to wonder if the school will provide services for Selah?  I do believe it is against the LAW, FEDERAL LAW for them NOT to do so....   I'm sure there will be some little loophole they THINK they can use.....so if any of them are reading my blog....just be aware, I am not going to allow something like that to be done to my child. 

Yes I understand Selah will not go to college and may never go past where she is right now but in America every child has a right to an education. 

Once this last week of HBOT is done, I have nothing to do but get started on this situation with the school system.  Going to dust off my IEP book, make a few phone calls and get going on this next week.....  I absolutely will have no hesitation to call the media about this situation and to publically blog about it nightly....  Believe me, I will keep all of you informed on this situation.  We are in week 4 of the school year and until I contacted the school board last week, there had been no contact from them ALTHOUGH I had turned in the three little ones registration LAST SCHOOL YEAR!  

I'm sure you'd think that a school system would do everything they could to make getting services for these three little ones a priority .......   especially since they (the school system) withdrew our son without permission last year making me have to do much more paperwork to get him back in.....and since we turned in a huge folder of paperwork to them last year...you'd think all three children would at least be in their computer system  (no only one was)   and since we'd had so many bad experiences with a particular teacher and had shown the Pasco Co School system GRACE in not bringing a lawsuit against them for our son being led around a school with a rope tied around his waist like a dog....a school that has floor to ceiling windows so all the children could see it happen.......  You would think they would be helpful and work with us....You and I both would think that....but that is not what I'm seeing......  So......that's what I'm thinking about tonight.....

Day 17 HBOT- Many thoughts....

This morning I got up early and went walking, got my 2 miles in at our hospital's cardiac walk.  For years I walked 3-5 miles a day.  Then after we got home from our adoption, life was more complicated, then the accident....and my bestest walking buddy went back to work:(  So now I walk alone, although tomorrow Steve is going with me...hopefully.  One good thing is I had all my work done by noon:)

Today being 9/11 brings back so many memories....I'm sure you can remember where you were on that day...

Jon and I lived in NYC for a few years in the 90's so we have a special love for NYC.  What a sad day....  My memory was I remember I was doing client interviews at the detention center in Bartow and one of the officers told me a small plane had flown into the Twin towers. Having lived in NY for years, I have a special love for it. As I got in my car I called Jon who had not left for work yet. He turned on the tv....as the second plane flew into the other building... I got back to my office and told everyone, we turned on the tv in the "lunch room" We only had it on for a few minutes when the first tower fell. I remember praying for the people I knew were dying as we helplessly watched...then the other tower went down....the pentagon...Flight 92 in Penn.....what a sad day. Even though I had just become a supervisor, I told my boss I was "out of there!" all I could think of my Steve who was in kindergarten! I went and got him out of school and took him home, planted him down with a Scooby Doo DVd and watched tv coverage for hours.  We went to church that night and prayed....

So 12 years later, the war on terrorism  still goes on.  America is now possibility at the beginning of another war, this time with Syria.  If you wonder where I stand, so do I!  A part of me says go blow them up, another part of me says it will do no good....   I do wish we had a strong president and not such a weak one for this moment in time.  Since WWII it seems that America has not wanted to go in and WIN a war.  I regret the loss of any human life but I am very thankful that we bombed and fought across Europe to win against Hitler and I am not ashamed to say I am thankful that we dropped the atomic bombs on Japan and ended the war on that front also.  Since then it seems we do not want to fight HARD like that.  In Korea, Vietnam, Iraq, Afghanistan... we've gone in gently and not taken care of business, they've been "restrained wars" ....  I'm sure we'd do the same in Syria, since the John Kerry said it would be "an unbelievable small attack"...that is unbelievable that it was said....  sometimes it is better to just "take care of business" and then be done with it. 

So that's my foreign policy...aren't you glad I'm not Prez!
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Now the whole "rehoming" "adoption disruption"

Whew, what a can of worms!  In the adoption world, you hear little things here and there.  I was once approached by someone who wanted us to go to another country and adopt a child for them.  They had too many children to be approved for this particular country...  I said "NO"   I would never do something like that.  Now that is not even the same as rehoming or disruption but the lady suggested we  do it like that.  Too weird for me! 


Now I admit sometimes adoption is hard.  When we adopted Shad we expected a child like Sam.  Shad was said to be blind and mentally delayed...he was NOT!  He was blind in one eye and a 2 year old genius.  He was very strong willed.  He did seem glad to be with me and seemed to bond pretty good but he was so different than the child we were expecting.  He was a totally normal 2 yr old.   There were days when I wondered if we'd made a mistake adopting him in the first few months.  We loved him and enjoyed him, but he was a handful.  He would have temper tantrums where he'd throw himself on the floor, any floor and bang his head and yell.   If you know me.....I don't do temper tantrums.....  Steve and Sam were easy going kids, I'd never even seen a real temper tantrum like that....  Let's just say within 3 months those temper tantrums were gone.  It took a lot of work, a lot of consistency and love.  It was not easy but we worked through it.  I can understand how someone can feel like they can't handle a child.  I certainty had some thoughts along those lines myself!!!  BUT a child is not a dog you can return to the animal shelter because they pee'd on you couch!  

So disruption of an adoption means at some point before or after the adoption takes place, the family backs out.  Sometimes it takes place early on, some parents meet the child (international) and realize they can not adopt the child for various reasons.  In China you have 24 hours with the child before everything is finalized.  In Ukraine, you have to make a decision when you first meet the child about whether you want to go to court for the child.  I think I've heard of families backing out even after court, one family even after the child was out of the orphanage and with them:(   With an American adoption, usually through foster care, you have a longer window of time to back out legally.

I've heard about families who disrupted their adoption right after coming home.   I've not known anyone personally, and I don't think it happens much but you do hear things hear and there in the adoption community. 

This is another thing I'm conflicted about.....I think alot of it is foolishness!   Perhaps the family got caught up in the idea of "save the orphan" and I also think society is such a throw away society, that just like people get divorced for silly reasons and lack of commitment, people are also not committed to their children.  That makes me mad!

On the other hand, if a family doesn't bond to their adopted child, maybe the child is better off in another home! 

So I guess I'm not opposed to adoption disruptions but they should be governed and done LEGALLY with background checks etc.... 

The "rehoming" smacks of things happening under the table in my opinion.   That is dangerous to children!!! 

I do not know of anyone personally that has been involved with anything like this.  I do know it can be done legally, and have a social worker, lawyer and the court involved.  If something like this needs to happen, that should be how it is done.  There should be laws in place to protect children from any harm. 

So for the record, we understood with Shad that he was learning/adjusting to living in a family.  We talked with our social worker and our agency and got some great tips.  We worked through the worst of things within three months.  We adore Shad and he loves us.  We laugh about those days now and he thinks it is funny!

With Sarah and Selah, it was a dream, so easy, they just fit in like they should have been with us always.  I do think the 6 weeks we spent in Ukraine visiting them almost every day made thing easier for them and us.  We had over a month to get to know each other.  That was hard, it was inconvenient but I think it was really much better for the whole bonding time than China was.   With China I walked in, was handed Shad and was out the door in an hour with a new child....YIKES!   With the girls, we earned their trust.  When we left with them, even tho we got on a train and did an all night ride...it was easy, no crying, no screaming.  They knew us and we knew them.  They at least liked us and we LOVED them!  I could just cry thinking of the sweetness of that day....  Just wish I could go back to that day...

With Selah and Sarah, we were prepared and really didn't have any issues once we were home.  When we first met Selah, some of her odd behaviors worried us but she worked out of them, so quickly.  They were just institutional behaviors.  But once she began trusting us, we saw a change even before she left the institution. 


But what if a family has problems?  First I'd say contact your social worker and agency!  Try and get some pointers, take the child to your pediatrician and see if you can get referrals to counseling.  Do EVERYTHING you can not to hurt the child emotionally.  That child has been through so much.  Don't add more rejection to their lives!!!  And PRAY that God will help you.  Do everything legally if you do have to disrupt but do everything in your power NOT to do that!!!   I don't like that anything like this ever happens...it is very sad!  I have not seen the reports on NBC but I have seen them on the internet.  Some in the adoption world feel like NBC is just trying to make a sensational story...I feel like if it is happening and there is proof, then put it out there for others to know and hopefully it will protect some child! 

So those are my deep thoughts for today....sorry!  I got up too early this morning and have been rolling all day. 

Please keep praying for our sweet Selah, who is as much mine as any biological child could ever be.... I hope she always knows how loved and cherished she is!  All five of my kids are the absolutely BEST thing that ever happened to me!  I feel that so deeply in my heart.  They've blessed and enriched my life, so I've cried some tears and walked through some valleys with them and for them but that just makes them that much dearer and sweeter to my heart. 

Day 16 HBOT Killing Wasps

Only 4 more days to go....  Selah has been quiet today.  She had another busy day with HBOT then home for Physical Therapy and then back to HBOT.  She did great with everything, nothing new to report.  I love that we have therapies in place like we do to keep her stimulated and hopefully help her in different ways. 

Steve is finished with all his schoolwork and is waiting for the last few books of his senior year...so....I kept him busy today LOL.  A guy from our church really did the lawns beautifully on Monday so Steve is doing all the little things that he never has time for.  My swing area got new mulch and my garden is getting mulched too.  It's not cool YET but there is the tiniest hint in the air (which for Florida it means that it's less than 90 degrees after the sun sets LOL)  We are going to move all the playground stuff up in front of our house tomorrow.  In the summer we keep it more in the back where it is really shady but we are cleaning and moving it to its' winter area.  So glad we'll be home this year!  Also I'm getting ready to do a winter garden.  That is one reason Steve is working on the garden for me.    To have this small feel of "fall" in the air is exciting for us Floridians:)  We do have lovely winters, I love having the kids outside more, less bugs, perfect temps.....  Florida is fantastic in the winter!  I think Florida is great in the summer too but it is hot and humid here....really hot and humid! 

 

This is a huge wasp's nest between our shed and fellowship hall.  When our friend was weed whacking yesterday, he got stung.  He told me it was big but when we went back to spray it, we both freaked out!   It had hundreds of wasps on it. I didn't measure it but it is probably much larger than a dinner plate and thick.  After the wasps are all gone and we can get up in there, I'll get it out.   Jon used a big can of spray to kill them and still there are some more that he has to kill tonight.  I'm not one to like to kill things but wasps are mean and I'm allergic to them!   We saw some wasps out today so I'm hoping we get them all tonight.  I bought TWO big cans for tonight!!!!!

 

 

So a quiet hard working day today....got lots of work done, need to do lots more:)  It never ends......

 

Please pray for a young couple who reached out to Jon and me when Selah was in the hospital in NY.  Their young baby girl was in the PICU also.  They were just wonderful and attentive parents.  Early this morning their daughter Stella passed away.  They are believers and were prepared as they knew she had an incurable genetic condition...but who can ever really be prepared for a loss like that of your only child..   Please keep them in prayer...my heart aches for them.  That little girl was their world and I can not imagine how they will feel in the days and months to come....

 

 

Please keep Selah in your prayers also....

 

If you have seen any of the news reports about "rehoming" or "adoption disruption"  I will probably address it on here tomorrow.  Personally I'm glad there is a spot light on it, I don't think it is a huge problem in the adoption world...but even if it is a small problem, it needs to be addressed and something put in place to prevent it!   The most important thing is children need protection! 

Day 15 HBOT and great pictrues!!!

Ok before you get to the pictures.....a little disclaimer.....  Selah has always had a little neck control, some days better than others.  When we were still in NY she could hold her head up at times up to 15 seconds.  Then when we transferred to the "rehab" ( and I use that term loosely)  she seemed to lose all of the neck control she had. 

Today we really wanted to see what she could do.  We took off the back of the stander where her head rests...and she had a little head control.  Her Occupational Therapist was here and she said that Selah was more alert and aware than she had ever seen her in the 8 months that we have been home!  Selah held her head up completely a couple of times, for a few seconds each time.  She seemed to have a bit more control in putting in down (it didn't just drop down fast) and she didn't put it all the way down. 

I am careful not to exaggerate things with her, it would be easy to make things look better than they are and claim some type of healing from God or help from the therapy that isn't proven yet.   So with that said, I am still happy with what we saw from La La today.  She was a bit mad and she shows it in a picture, that is good too:)

 

yes she is ticked off in this picture!!!!!!

 

 

 

 

 

This is the one, she had already held her head up some and I was hoping to catch it, the therapist moved her hand and Selah kept her head up!!!!!!

 

 

 

 

 

 

 

 

she put it down but still had some control over it.   Her head went down slower than usual, no big drop! 

 

she looks so cute and is working hard!!!!!!!!

 

So Selah had Physical therapy then HBOT, then Occupational therapy and then HBOT.... she has been one busy little girl today!  (Sam and Sarah also got PT and OT)    Selah's PT felt like Selah had better tone than usual.   Meaning not too tight and not too loose....she felt good. 

 

If you are wondering about her outfit....she has to wear scrubs to HBOT and they wash them in their soap, they are very particular.  So all they had clean yesterday was Spider man scrubs.  But if you notice her hair ribbons match! 

 

I want to thank some friends, the Blacks who picked up Selah's meds that we have to get from Brandon for me so I didn't have to drive an hour there and an hour back to get them!  Today has been crazy!  That was such a BIG help for me!!!!!!!!!!!!!!!!!!!

 

I know looking at these pictures, it is hard to understand that Selah is considered still in a persistent  vegetative  status...  but she is and if you were around her all the time, you'd understand.   But we still pray that God will bring her out of the PVS and heal her brain completely. 

 

One thing we need to see if for her to swallow and manage all of her secretions.  She does swallow and she does handle most of them, say 80% but we want to see that go to 100%! 

 

We are seeing some "good" movement and we want to see more!  I love when she moves just one hand/arm.  When she moves them together, that is not good, that is like basic brain stem activities.  But she does move them independently and I love that!

 

Last night we didn't have a nurse and Selah decided to be all awake at midnight!   She kept lifting her head off the pillow even though I told her it was night night time:)  She was moving all around in bed, her shoulders and even her feet some.  I was glad to see it, but was afraid she didn't feel good.  It seems like she was just moving ....:)  that is also good.  Tonight we have a nurse, she can move all she wants LOL.  When I'm by myself, I worry if I'm not watching her.....

 

So we continue on this adventure...please pray for Selah, pray that God will  heal her!!!

 

 

PS.  if you've wondered about my neck/shoulder/back pain....I've been meaning to tell you.....  I started using a travel pillow, those ones shaped like a U and it seems to help by holding my neck in place while I sleep.  I've had much less pain in the last month, still have to watch it but it might have just been the way I slept on it. 

 

 

 

 

 

 

 

Day 14 HBOT

This morning at HBOT I had a great discussion with another parent.  I like talking to people who are interesting and can discuss various points without being a pain LOL.   Anyhow we were discussing different aspects of Christianity.  His background is similar to mine, in some ways.  We discussed healing and our thoughts on it.....just had an interesting talk.  Then we somehow started talking about God's peace....that true deep peace....the peace that holds you when your world falls apart....it was really uplifting to talk to another traveler on a road similar to our road who knew about THAT peace, the kind that truly passes all understanding......

That conversation just reminded me of what a treasure we have in the wonderful peace....nothing can take it away from us.  When life is hard, when you get bad news, when you wonder if your child will live and what kind of life that child will have, when you are in a hospital, ....there is still a peace that circumstances can not take away from you if you know the Giver of peace.....

While I would never ever chose to go through many things I've gone through....especially the last year of my life, what a amazing thing to realize that the peace of God that you've talked about, and sang about is REAL!!!  You can't manufacture it, you can't pull on emotions, you can't fake it....but if you have that peace, there is nothing, nothing that can truly touch you. 

It's is so real, it transcends the circumstances of life.....

Oh I cried, shook and even threw up...but in the core of my being was a peace that I could tangibly feel.  It's hard to understand but if you would have asked me the night before if I could have handled what was to come, I would have said NO!   But God and his wonderful peace was there for me in the worst hours of my life.  I am so grateful to God for the peace He gives....

There is nothing in this world, no sin, no riches, no gains, that can ever replace that incredible peace of God.  If you don't have it, repent and ask God to give you that peace and He is faithful to do that.....
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Keep praying for Selah as we start her last week of HBOT.  We are hoping to see some big results.  She has been quiet since Thursday but the hope is the new brain cells are growing.......with all the oxygen she gets.