iPhone and Mashed Potatoes

Yes it has been a long time since the last update.  I could write pages about what has transpired over the past few weeks.  It has been a month and a day since the last update.

To start with the most current news, I held up my broken iPhone for Rachael to see tonight and asked her what it was.  She said "I Phone" so clear that Hanna freaked!  It was great.  First off for her to see an object, associate what it is and to recall the brand name is fantastic!  To hear her clearly speak the PH blend for the first time was thrilling.  She still has a long way to go and her vocabulary is limited to a few words that we can sometimes understand.  Nancy has been praying for the Lord to please let her speak with Rachael again.  It looks like her speech is coming along.  It has been questionable whether she has been able to associate objects that she sees with what they are.  She now has left us with no doubt that she has association of objects to their identity.

Tonight Rachael was able to have mashed potatoes for the first time. She enjoyed the starch.

Rachael is scheduled for her 2nd swallow test on Tuesday the 2nd.  This will give us an idea of how good she can swallow so that she may be able to learn to chew foods and drink liquids.  It is more difficult to drink a liquid than to swallow mashed potato consistency foods.  We are praying for hope that will arise from her swallow test that will one day soon lead to Rachael being able to drink and eat.  Once she can do that, the PEG tube can be removed.

Rachael remains very healthy.  She avoided a cold that went around the house and her regulatory system is functioning fine.  She is VERY alert and enjoys sitting in my Lazy Boy chair (I have been dethroned by the Queen!).  She spends a good portion of the day in her wheel chair and the remainder in the Lazy Boy until about 7 or so then we prepare her for bed.  Now remember that she cannot yet walk and has some small motor control over her extremities but not much.  The Baclofen pump is working well and she has been in for several increases.  We have seen that there is a difference in the contractions as the amounts introduced to her spinal fluid are increased every 2 weeks.  It will be several more visits before she has a therapeutic amount flowing.

Rachael still suffers from pain in her legs as she continues to heal.  There are times, often, that she cries out from the pain.  She is willing to go without pain meds for it but if it gets too bad she will accept them.

PRAISE REPORT: The pain in her eyes was diagnosed as being dry eyes!  It seems that she does not blink nearly as much as we do.  She can beat anyone in a staring contest right now.  The Ophthalmologist prescribed fake tears for her eyes 4 times a day.  She has not had another eye pain issue since we began this protocol.  She is off several of her 20 odd meds.  She is still taking a lot but as the Bacfolen pump does its job, she will be weaned off the other meds.

She remains in good cheer and has let us know that she is not angry about being in her condition or sad about it.  The pain drives her nuts at times.  She has high cognition so she knows what is going on around and about her.  We have told her all that happened several times.  She is a loving, forgiving, patient, joyful, kind and often very self controlled young woman in Christ.  This shows that no matter the physical condition of the person, if they are saved by the blood of Christ, the Holy Spirit is alive and well within.  He came for the sick in more ways than one.

You may wonder how Nancy and I are doing as well as Hanna and Daniel.  It has been very hard.  It was a H U G E adjustment.  In retrospect, the first week was comical in a dark way.  Nancy was constantly concerned about Rachael when she was not with her at Heartland or at Health South.   Once home, Nancy had some peace.  Her anxiety level was way down with Rachael at home.  As for mine, it skyrocketed.  I freaked.  There was so much to worry about.  There were so many new people popping in.  New rehab, new speech, new nurse, new aide, equipment coming in, stuff not working right and of course a lot of thoughts not taken captive.  I had attacks that week that I had until then not known.  All I delivered was an emotionally volatile elixir of fierce words served up from an ugly heart.  It was a terrible witness.  After several mistakable days, broken and empty, I turned to our God as I should have and learned quick to not stray from his covering.  I did not have much of an appetite the next week as I was eating huge portions of humble pie.  You must  understand that if we seek first His kingdom; His being Jesus Christ, God, He will take care of all the other stuff.  If we try to do it alone, it stinketh.

I had taken a part time job at Living Word on Fruitville.  With Rachael coming home, we quickly found I could not work during the transition.  I worked there for just a few weeks.   Then, after the dust had settled, an opportunity came my way from a place called Stewart Signs.  They have been selling Church signs for 40 years.  I am now working for Stewart Signs full time in sales.  All that is great and it is really a blessing from our Lord, we both know this.  Yet, it has been hard on Nancy.  She is left to tend to Rachael all day.  It is very hard work.  Rachael remains not able to even roll herself to her side.  It has been a struggle for Nancy.  Hanna is fantastic at helping and has learned to do much from her mom.  Still it is very hard.  The toughest times are when Rachael is in pain.  She can get very loud.  I pray each day for Nancy to have the strength to get through that day.

It has been tough on occasion for Nancy and I as well.  If it were not for Christ, we would have been done a long time ago.  There is so much to deal with emotionally and physically with Rachael in the shape she is in.  Rachael usually cries out several times a night for changes or discomfort.  There was one night a few nights ago that she slept through the night.  The biggest problem for us is that we do not get the sleep we need.  I am use to living on 5 or 6 hours a night.  Nancy is not.
We are doing fine even with the bumps we hit.  It simply is hard sometimes.  There are friends that come by to help out around the house, or to watch Rachael.  Deb White has been a great blessing.  There are a few other active helpers, a one hand count.  It does break your heart a bit.  It breaks for those that have become acquaintances that were much closer as they are missing the blessing of Rachael.  I am sure they are praying but it would be nice if folks showed up for Nancy or just to give us a few hours to go out together.  We are unable to go to Church together and we really miss that.  We take turns, every other Sunday the other gets to go.  Rachael is not acute and like anyone is usually in great spirits.  She likes company but she is dependent and can not be left alone.

We have received great support from various folks with Rachael's trust fund.  The money has helped to pay for Rachael's needs and will pay for her Hyperbaric treatments.  Our Church, Calvary Chapel of Venice was very generous.  Calvary Chapel Refuge in Bradenton provided a nice donation and the most excellent family of families that make up Calvary Chapel School gave a huge amount that arrived at a very important time.   Nancy and I were blessed beyond measure financially and spiritually the last day of school at Calvary Chapel.  We love you guys and will miss being there.  Hanna will continue to school there as long as the Lord lets that school do his good work.  I pray they can become a high school!   Surprisingly, most of the donations in Rachael's trust have been from strangers.  All in all, the money has helped with the start up of treatments, acquisition of items that Medicare will not pay for ( good as they are, they have many limitations) or that Medicaid cannot pickup.  By the way, if it were not for Medicare and Medicaid and the fine folks we have worked with in those offices, Rachael could well be dead.  It is that simple.  We all have our opinions on these programs but they were used in a mighty way.  They are stringent too.  There is little waste and high accountability. They won't get you a Caddy but they will pay for the bus.

Hanna had some adjustments to make.  It was hard as Rachael needs so much attention.  She has grown so much in the Lord over these past few weeks.  She is reminding us at times what the Lord's will is.  She is not wise in her own eyes, she does not like how she can feel and she seeks the Lord to get the help.  It works.  She is doing much better, having a very enjoyable summer and continues to be a huge help around the house.  She took her bike around the block, solo, for the first time a few weeks ago.  It was a big day.

Daniel is busy.  He works a part-time job, plays worship at two churches, helps out in a band, is involved with youth ministry and is a great brother.  Oh yeah, he is going to school full time too.  Bittersweet it is as he will be moving out to California in August to go to Bible College at Calvary Chapel Bible College in Murrieta, California.

So that is where we are at for the moment.  One other thing is that we want to thank our friend Glenn Albert for his wonderful work around the house.  He had a friend that was in possession of a power lift for immobile patients.  His friend gave it to him to give to us.  Glenn installed it and with some mods around the house, we are able to get Rachael out of her bed and into the bath with much more ease than we had planned.  Thanks Glenn for all you have done!

We still get visits from John at Heartland.  He has blessed us by having several dinners with us.  We cherish his friendship and he is a great friend to Rachael.

Sunilda from Heartland continues to encourage Nancy, thanks Sunilda, Chica and Joy bark 'hi!'

Ok that is it for now.  Sorry again to have been so long in updates but we hit the bricks running when Rachael got home and it is only starting to settle now.

Prayer requests:

For Nancy to be filled and lifted-up.  For more help to come to give her a break during the day.  For me to continue to find ways to love her and to remain a solid spirit led leader in our family.  For Hanna to continue to not feel jealous or frustrated and for Daniel as he prepares to leave for Bible College.  For balance in the home.  For Rachael, for her healing to lead to her walking and talking .  Most of all we give thanks to our Lord Jesus Christ for all He is doing in us and Rachael and the many opportunities to have Christ shared or shown through Rachael.  God gets all the Glory!

O God, our help in ages past,
Our hope for years to come,
Our shelter from the stormy blast,
And our eternal home!
From O God Our Help In Ages Past by Isaac Watts

"As for the days of our life, they contain seventy years,
Or if due to strength, eighty years,
Yet their pride is but labor and sorrow;
For soon it is gone and we fly away.
11      Who understands the power of Your anger
And Your fury, according to the fear that is due You?
12      So teach us to number our days,
That we may present to You a heart of wisdom. "

Psalm 90:10–12

I pray that the Lord teaches all of us to number our days.