Need Prayers - Got A Prayer To Spare

5th Posting   April 12, 2011

E mail 5   12 22  10     written by (Sue) the Ghost Writer

Merry Christmas,  2010

Hello to all my family, friends and especially my extended family.  Can you believe this year is coming to a close?  What a year it has been for me and my family.

First, I wanted to personally thank each and every one of you for all your support, and prayers this past year.  This year has been very successful because of wonderful folks like you who gave so unselfishly of yourself.  Without your love and prayers  I don’t know what we would have done.  My family really appreciates all that you have given us.  I would like to share my 2010 with you;  I thought I would start from the beginning since we have had a lot of extended family members come later in the year.                                                                                                                      

I started 2010 with having a feeding tube inserted in my stomach for nutrition,  I continue today with this feeding tube.  Being feed by a tube has been very challenging for me and my family.  We were hopeful that late this year I would be able to join the feeding program so I could learn to eat by mouth, however that had to be postponed for now.  Due to my silent aspiration, (I choke on my own saliva) we all agreed this would not be a good time to start, maybe  we can try in 2011.

My biggest challenge for this year has been getting my seizures under control.  I suffered terribly the majority of this  year with having such severe seizures that I had to be sedated.  The seizures have slowed me down in my progress.  The good news; recently I had my medicine changed and my seizures are coming less and less.  Thank goodness, I actually have energy to play. 

Mid-Year I received some really cool medical equipment.  I have a special chair that my family can adjust by height if they want to play with me on the floor or they can sit me high enough to join them at the dinner table.  I enjoy my cool chair it helps provide support to help me sit-up.  I haven’t done well in this area on my own,  I have such severe muscle tone problems I’m unable to support my head on my own.  The good news I have learned to lift my head all on my own.  I scare the heck out of my grandparents when I’m being held, I can move my head so quickly now to look at all the cool lights.  I know for some of you asking what so cool about all that well let me tell you a couple months ago I could not even lift my head. 

Play time has been great the last couple months.  I have a neat play mat with hanging toys; I can swing the heck out of them now, the family better watch out I’m ready for the big league now.  I’m able to finally get on my stomach without screaming my head off.  I still don’t care to lie on my stomach since I’m unable to move anywhere.  Put me on my back any day.  I have learned to lift my back and get myself turned around.  My family is always asking how I can do that.  Pretty amazing stuff what a kid like me has to do to be in the know.  I’m always busy trying to see what is going on.  Let one of my family members leave me alone in a room.  I show them!!  I learned I have a pretty good voice box and I do use it to get them back in that room.  Let me tell you,  they come running.  I  have them wrapped around my little finger don’t you think?

The most amazing thing happened in early December; I was approved to have home care nursing staff 16 hours a day.  Wow,  if my nurses aren’t something.  I have four of them currently.  They are here Mon thru Fri during the day and at night.  This has not only been great for me, but more importantly for my family.  My mommy and grandparents are amazing people and there is nothing they wouldn’t do for me, however they were getting pretty wore out.  I do have my challenges and need a lot of extra special care.  We count our blessings every day for this extra help, our house has such positive energy again.  Because of this major change, we are all happy and have discovered a wonderful routine that is working. 

The latest news as of last week, I have been sent to Special Doctor.  Wow,  was that some amazing visit.  We were told I’m a good candidate to try this special diet Ketogentics diet.  This diet has been around since 1920.   According to the experts, this diet can either stop my multiple seizures or at least reduce the amount of medicine I have to take,  Yes,  it is dangerous, but through this 2 year program I’m monitored by doctors via blood tests to ensure my nutrition is good and all my levels.  We will find out the first of the year if we will try this diet.  My neurology doctor and my family feel that it is worth a try if it can help me get better.  If my seizures would stop or if I could reduce some of this medicine  I would have a better chance of getting stronger and be able to develop to live a more productive life.

We have tried hard and continue this fight.  My family and I have a very long hard road of ahead of us, however with your continued support and prayers anything is possible.  Please continue keeping me in yours prayers, it only because of the Grace of God and your prayers that I have progressed the way I have.  

I wish all of you a blessed Christmas season!  I, on the  other hand, can't wait for Santa.  I can't imagine what he could bring me, for I have  already been given more than one can dream.  I love all of you and wish you safe holiday.     

Love You       Laticia Nicole

E mail  6,  January 23, 2011

Thank You

These two words represent so much. There are not enough words to describe what I wish to convey to each and every member of  Laticia's Prayer Army, so I will just say Thank You for all the prayers that you render on behalf of her and all those like her.

 The other day I met Judi , a Prayer member,  who related to me a very sad, but true,  story written by an old friend, who like many of you, have extremely strong feelings of the rights of an unborn child of God, and a mother's decision to carry her gift to full term.  I'm trying to compose words that will be forceful enough for you to go to the following internet web site (http://www.cogforlife.org/nevan.pdf ) and read the story of "Nevan holy little saint", for yourself.   I also urge those that do, to print the article so that it can be shown and read by those who do not have a computer.  I have tried to copy the story to attach it here without success.

Judi also told me that another prayer group was aware of Nevan's story and they asked Nevan to intercede with our heavenly father, on behalf of the child that they were praying for.  The group attributed the success of their prayers based on Nevan's intercession.

Laticia I am happy to report, is making very tiny steps of improvement; occasionally, there are dark days where she will have 3 seizures in a day, and bright ones, without her having any seizures, she is beginning to have more muscle control, is able to focus on reaching for her toys and rolling over on her stomach is almost effortless.  She is definitely a people person and her bright smile is catching. Laticia still has a long way to go, she needs your prayer.     I believe in miracles -  I hope you do too!

Phil

E mail 7,  February 11, 2011

Hi     

The other evening we were in touch with the family and were pleased to learn that Laticia is now bigger in height and weight.  19lbs,   2' 11.5"

She now tries to place her fist in her mouth, which is a new movement, and she easily turns herself over without any effort.

The seizures are becoming less severe, but still too frequent.   The family reports that she is a very happy baby, with a big smile on her face, most of the time.

The most amazing thing of all, she is now able to eat by mouth.  she  eats one teaspoon full of baby food each day and enjoys it.  Her doctors were pleased at the news so.... when she returns from Florida (visiting us at the later part of the month, if all goes well) they will start her on a special diet, which should help her seizures.

While the above results seem to be too small to shout about, they are really tremendous in view that others like Laticia haven't got this far. We're convinced that your prayers are the reason why Laticia is still with us, and will be for many more years to come.

Many thanks for all your prayers and may the good Lord keep you in the palm of His hand.

Phil     

PS I'm charging my camera batteries and hopefully will get some good pictures that I can send along to you.