Day 70 Fish OIl study

We decided to stay overnight at home so we have been working on projects this afternoon.  Most have annoyed me!  I went to two different pharmacies to get Selah's meds ( to have them once she is home ) and just got the total runaround....So still don't have them in place.  I have a million little crappy "projects:" that only I can do like fax insurance/prescription cards...etc....so annoying.  I feel like I"m getting NOTHING done!  I need to make a list and just go down it.  That is the only thing that works for me.

Selah has done fine, no more elevated heart rates.  No issues...it's just hard for me to be away from her.  I feel torn in a million directions, being so far from home, there are so many things that need to be taken care of here when I am home!  Probably tomorrow they will up her dose on Ritalin and see how she does.  We hope to be up and rolling early!  We will be up...rolling is a bit hard with all the kids!

Had a good service today.  Our music minister sang a grouping of some of the old "Sunday night revival songs"  One was a childhood favorite "Getting Ready to Leave this World"  and there were a few more ALL I knew but now can't remember them LOL  I have no brains or memory left...that is why I make lists!  Every Sunday I say I"m not going to church so I can get things done before we leave since we're just home Saturday night and Sunday morning but every week I go....and am glad to go....

PLEASE keep praying for Selah, pray this med will work on her.  Pray the Fish OIl will continue to work on her but more than anything pray that God will have mercy and touch our daughter and heal her. 

Day 69 Fish OIl Study

This morning we went to see Selah.  We took her outside for some sun and we fed the ducks in the outdoor pond.  Sam threw in a whole piece of bread and the ducks loved him. Selah seems to enjoy being outside.  We are so looking forward to her being home where we can take her outside daily. 

She was started on the Ritalin at 8 am today.  The doctor will start her slowly and see how she does.  She did get upset this afternoon after her splints had been on her arms for 1.5 hours.  The nurse removed them and held her for a few minutes and she calmed down.  We don't think that was caused by the Ritalin but it will be watched closely.  Please pray that she will respond to this medication.

We drove home and went to see Jon's dad.  It was his 85th bday!  What a wonderful father in law he has been to me all these years!  My mother in law was the greatest also and we miss her.  She was killed in a car accident only a few months after Jon & I got married.  I often think how different life would be if she had not had the accident.....  You never know what tomorrow holds, love your family and hold them close while you can. 

So we finally got home  late tonight and found ALL our "left over" things ~ things we couldn't get packed int our car waiting for us!  Thank you RMH for mailing all that to us, it was like a little Christmas:)  We weren't sure what was in there LOL!

Well I had some great photos but my blog is not being cooperative...maybe tomorrow!

Thanks for all your prayers!!!!

Day 68 Fish OIl Study ( and book review)

Today Jon took the day shift and spent the day with Selah.  He was able to take her outside and she seemed very content.  We have been reading and discussing various meds that have shown some improvements in some patients.  We have decided to try her on Ritalin.  It works on a child like Selah differently tha it does on a child that has ADD.  In a child like Selah it has shown to help make them more alert.   The other med we tried a few weeks ago didn't work at all but this works differently on the brain so maybe it will help her. 

Jon came and picked us up and we went to this great place called Town Center...oh my....lots of places to eat and stores.  I got a manicure/pedicure....and just like the Russian lady who cut my hair that day before Christmas when I was so down....the lady who did my mani/pedi was a Vietnamese Christian.  She wrote our names down in her bible to pray for Selah.  She kept telling me "not to worry I will pray now every day"  While my nails were drying ( my REAL nails btw!  Nothing like a bit of MRSA to keep my hands out of my mouth LOLOLOL)  she came around and gave me a massage and I could hear her praying under her breath....it took all the self control I had not to just bawl my eyes out....  I love God's people!

Jon found the best book at Barnes & Noble!   http://www.amazon.com/The-Grace-Effect-Corruption-Unbelief/dp/1595554408    The Grace effect by Larry Alex Taunton

IF you have ever adopted or plan to adopt from Ukraine this is such a great book!  You will find yourself standing in the hallway of the SDA....it talks about the corruption and the "gifts" or bribes...(yes for the record we did knowingly give a "gift"  LOL  at that point we were at, it was a NO brainer!!  And we would do it again in a heartbeat!)  So many of the descriptions just brought back so many many memories.  I LOVE Ukraine despite all of its problems.  I didn't feel like that about China.  But Ukraine got in my heart!

This writer Larry Alex Taunton is a apologist and he regularly debates the "new atheists" like Christopher Hitchens (before his death)   So this book also is about the GRACE of God in an orphan's life and shows how ONLY Christianity reaches out to the world to change it!  What a GREAT book!!!!    I was fightig tears throughout is as I sat in Selah's room tonight reading it....

So since Jon did the day I stayed with her late tonight.  She was unusually alert for the time and she watched her DVD of Baby Praise intently!  I felt like she wanted to be held and she did:)  I sat her up and pulled her into my lap and she just got so calm.  Later I had her torso supported by my knees and she totally held her head up for quite a while!  She would need some assistance at times but did better than I have seen her do since we have been in Florida!  After I put her to bed, I went and found the nurse, I actually thought maybe they had already started the Ritalin and she was responding!  But it doesn't start till tomorrow morning.  I was just thrilled with her alertness and how she would look me in the eye.  One thing that really bothered me is her arms were so tight tonight.  They were drawn up to her sides and bent in.  I did alot of ROM (range of Motion) and ticked her off good!  She has 100% ROM but she just goes back to that position.  Jon said she was not tight when he was there and that the therapists remarked on how loose she was.  Tone is a funny thing!

Please pray that Ritalin will  help Selah......we will not quit praying or trying to find medical help for her ever!  Sometimes it is trial and error.  But we will try things that have sciectific data supporting some positive changes in patients like Selah.  I'm not a big drug fan but at this point, we will try things and see how she reacts!  There are a few more drugs to try that have brought help to some children.  But we hope this one will help her!

Another chance to give!

http://www.followingwheregodleadsus.blogspot.com/

I just gave to this little guy's family and it was a pain to redo all the paypal stuff but I'm so glad I did! they need $12,000 to finish thier adoption of this little guy from Russia. they've past court and are thankful that their adoption will proceed! Can I encourage you all give?  My blog has about 4000 hits a day...if all my readers would take the time to go and give just $3, their need would be met!!! 

 

I chose to give because of all the love that has been shown to our family, I wanted to pass it on!!!   Giving to this family would be a "good thing" to get this little guy home and to the medical help he will need soon to save his life! 

 

I posted his info back awhile ago and then it was unclear if the family would be allowed to finish their adoption, but thank God they will be!!!

Just click on their link and look on the right side of their blog and you can see the "chip in" section where you can give!!!

 

God bless you!!!

My Real Life

“The great thing is, if one can, to stop regarding all the unpleasant things as interruptions in one's "own" or "real" life. The truth is, of course, that what one regards as interruptions are precisely one's life.” ~C. S. Lewis

When I saw this quote, I couldn't help but think of my life......and the title of my blog.  Back four years ago when I started my blog, I really had an issue coming up with a name for it.  I asked my brother in law, Jim because he is really good with words and he came up with some funny names like "Yvonne's Yarns" .  But this title came to me, because I live a real life....well  I didn't know how real my life was going to get! 

We are tempted to think "when I do this" or "when I finish this"  my life will really be perfect.  But it never is "perfect"  it's just life.  I'm a tidy person (OCD person) so I always feel like life is perfect if my house/yard is clean, closets straighten, garden done, kids clean and in perfectly ironed and matching clothes with fresh hair cuts.....so with all these kids, that rarely happens....  Living out of a Ronald McDonald House, or a hotel room, with a child in the hospital,  and kids wearing whatever happens to be clean, and me going over two months on a manicure, and a husband who needed a hair cut two weeks ago would not be my idea of "life" it would be more my idea of an "interruption"of my life!  But guess what?  THIS is my life like it or not!

And where/what ever you find yourself in, is your life, like it or not!  Personally I'd prefer things to be different in my life but I don't want another life....  So we all have to make the best of where we are....  You only get one life. Don't waste your life by wishing it away.   Do the best with the life you have.

I love hearing stories of folks who took the "talents in their hands" , their lives and did great things for God.  Even when there did not seem much "in their hands"  I recently read in the book "Reckless Faith"  of families who had nothing yet would take kids in their homes to raise them.  I read of an older retired man who started a church in the worst area of a Mexican town,they used the talents in his hands, worked within their circumstances to do great things for God.  That is what I want to do! 

I have dreams in my heart that may never be fulfilled now....but that doesn't mean I'm just going to "lay down and die"   I may never get the chance to work overseas, run an orphanage, but I'm going to serve God where I am at by serving my family and being open to whatever God brings across my path. 

So I encourage you, use what is in your hands for God.  It may not seem like much, but God can take your faithfulness and make it a story that will encourage others ......

Day 67 Fish Oil Study

Selah has had a good day today.  She was alert in therapy, no storming now for a week.  She is resting good tonight.

So long day dealing with insurances.....We were denied coverage by Blue Cross for her to stay here past Friday morning.  Yesterday we appealed but today we found we were denied the appeal.  At the same time we have been appealing to Medicaid, her secondary insurance for nursing care ( BC does not do full time nursing)   Today we found out that Medicaid will cover her stay her until the nursing issue is resolved.  I filled out an in depth schedule for Jon and myself today to show our need for 24/7 nursing.  It made me tired LOL.  It looks like we have an agency to work with us.  We have worked with some really nice folks, even the ones at Blue Cross that turned us down:)  The Pasco Co Medicaid office has really worked hard on our case and are very sympathetic towards our complex situation.  Usually I'm a mess trying to work out things like this (not that I have ever had a situation like this before thank God!)  but I've had a peace even though everyone around me has been quite negative towards our need of 24/7 nursing, telling me how it won't happen.  Our case is unusual to say the least with two other handicapped kids but because of our situation we are finding the help we need.  Nothing is for sure at this point but I've believed from the beginning that God knows what I can and can't do and what I already do with Sam and Sarah who are both severely handicapped.  Some people say I make it look easy, and to be honest with the three little ones before the accident, it was easy for me.  It was like having two toddlers and a baby.  Well now that has changed alot.  I believe God will provide what I need to be able to take care of all my children.  I've had nothing but positive input today from the various offices that will have to decide the hours of nursing we will get.  Our situation won't change over time because my little ones will always be "forever toddlers/babies"  So unless Selah is healed, our nursing situation should stay the same.

We have made the decision to home school Shad and Steve for the rest of this school year.  Steve will probably have to work through the summer also.  We haven't had books since before Christmas but hopefully we will pick them up this weekend.  We had been going back and to on this decision but we feel this new journey is too new and fragile for me to try and take the kids to school and Jon has to get back to work and will have no leave time to be able to transport them.  It has worked so far this year and will work out for us. 

During my hours on "hold" today I did find some studies on comas and bringing people out of them.  I brought some of the info in and talked to her doctor about trying a few other drugs..  So we are going to look at trying a new one.  There have been a few cases where there has been improvement, we will see.....  I believe in medicine and believe that God gives doctors wisdom and caring hearts to want to ease human suffering.  Just like we were blessed to find out about Dr Aquevella and his life long work on artificial corneas and now have a little boy that has some sight compared to being blind!  I keep praying and hoping we will find another "Dr Aquevella" who has tried something new that works on brain injuries. 

So a busy but productive day....thank you for your prayers and please continue to pray that everything will work out in our favor for Selah's nursing.  Pray for Selah, pray that she will be healed!  And we won't even need nursing!  I'd be thrilled!!

Persistent Vegatative State/ Pondering in my heart

Selah has been diagnosed in a persistent vegatative state (PVS) by the doctors here and was diagnosed in a minimally conscious state (MCS) by the doctors in NY.  There is some difference in the two terms with MCS being better. It is still a coma state but not quite a coma.  From what I read the patiets are still judged on the coma scale for the various testing models.  Some would say  a person in either state is not in a coma per se some would say the person still is to some degree....

If you read about either state, you will know that Selah is not expected to "come out" of this state.  Basically a person has about a 6 month window to recover and if not, then it is highly unlikely....  Selah is almost at 5 months.....

There are times my heart breaks in a way I didn't know it could break.  We went from no hope of her surviving to no hope of Selah coming back to us.  She has progressed some, but I'm not stupid and I'm not a person who doesn't believe doctors either.  Doctors make diagnoses based on what they and others have seen and usually they are right or close to right in their diagnoses.  I'm not one of those foolish people who are always going around saying "Whose report will you believe?  I will believe the report of the Lord"  I do believe the report of the Lord BUT only if God has given me a report to believe.....   the prophet Isaiah in Is 53 is telling the people a prophecy/God's words to them...The scripture actually reads:  

Isaiah 53

New International Version (NIV)

53 Who has believed our message (or report)
and to whom has the arm of the Lord been revealed?
² He grew up before him like a tender shoot,
and like a root out of dry ground.
He had no beauty or majesty to attract us to him,
nothing in his appearance that we should desire him.
³ He was despised and rejected by mankind,
a man of suffering, and familiar with pain.
Like one from whom people hide their faces
he was despised, and we held him in low esteem.

⁴ Surely he took up our pain
and bore our suffering,
yet we considered him punished by God,
stricken by him, and afflicted.

 

In the gospel of John that verse is fulfilled by Jesus' coming....  

John 12:38

New King James Version (NKJV)

³⁸ that the word of Isaiah the prophet might be fulfilled, which he spoke:

“Lord, who has believed our report?
And to whom has the arm of the Lord been revealed

 

somehow the Pentecostals/Charismatics have made that Messianic prophecy into some type of "magical saying"  and as long as they say they believe "the report of the Lord" then things will be reversed in their lives....Um...so sorry, that is not even a little good theology!  It's not even quoting scripture correctly!  

 

So that was our little correct theology lesson for today....

 

So in saying all of that, I'm talking about acceptance of Life....I accept Life...

 

On the other hand, I had a vivid dream right after the accident.  I dreamed that Selah and I were home together alone.  It seemed that it was really bad weather outside.  It seemed that everyone was over at the church, maybe it was a Sunday morning.  Anyhow in my dream, Selah "woke up" "became herself again"  We were sitting in the living room area.  She was still a small girl and it did not seem like a lot of time had passed.  She was back cognitively in a way I understood her being Selah.  However she could not walk but of course that didn't bother me in the dream!  I don't know what that meant, if it meant anything more than an extensive of my hopes....I'm not claiming it was a dream that came from God, but we will know it was if that happens.  It does seem interesting that even if Selah recovered cognitively, she will need surgery on her knees/ankles in order to walk again.  At the time of the dream I had no idea of how her body would respond to the accident.  I've held onto that hope now for almost 5 months.

 

So I don't know what the days ahead hold, as you can tell I'm in a reflective mood.  Please pray for Selah and for our situation....I know so many of you are and we thank you for holding us all up to God!