Prayers Needed-Got A Prayer to Spare: April 2011

Sunday, April 24, 2011

Prayers Needed - Got A Prayer To Spare

6th Post April 28, 2011
Beach HouseVisit ( Mar Apr )

The day finally arrived, Pip Squeak and her family, Jessica (Mother) Sue and Marc (Grandparents) pulled into our parking area after a two day drive. The family piled out of the SUV and hugs and kisses were the immediate order of the day. Agnes and I were so looking forward to their arrival for it was Laticia's first visit to the beach.

Marc (Agnes' son) and I started to unload and move their bags to our apartment. To be honest we didn't know what to expect for we knew Marc had a trailer and Laticia does require quite a bit. Unloading their car kept us busy for a while. So much stuff! There were suitcases, there was a crib and an intricate set up to feed little Laticia, a stroller, a car seat, a high chair, a play mat, toys, food and clothes, even a special tub-lounge, for her to be given her daily bath. I have to hand it to Marc, for he was a packing specialist every bit of storage space was utilized and we were kept busy unloading, for quite some time. It was surprising to find space in our condo to fit it all – but where there is a will, there is a way!

Another surprise, 5 grownups and a baby sharing a 2 bedroom 11/2 bath took some doing but it did not take long to establish a daily routine and tending to Laticia’s needs came easy. She slept quite well, and we attribute that to the love that permeated our condo and the warm gulf air. She had a ball laying on her mat, playing with her toys and watching TV especially anything where music was involved. Her little legs would move in time to the music and so would her bottom, squirming around on her mat.

More surprises were in store for us, Sue's mom and dad were visiting friends in our area and they were stopping by so Sue and her dad could attend a spring training ballgame. Laticia loved every minute of it for she sat in her highchair and watched with delight all that was going on.

Sue's boss and another friend were invited for dinner, and Agnes went all out making a delicious meal for we ate like kings and queens. Each evening Laticia would sit in her chair and oversee what was going on and when finished, we took a walk by the beach – she could feel the warm breeze, touch the sand and splash the water of the Gulf of Mexico. The fresh air was good for her and all of us.

Still being fed by tube, her feedings took much time, as much as several hours. No problem when travelling, since her food-bag and feeding tube were kept in a small insulated backpack, so she could be “hooked up” whenever it was time to eat. This gave us a chance to visit with a couple of our special friends, One in particular, for their visit did provide them the opportunity to make one very special visit. The family wanted to meet and visit with Sister Marie. Sister Marie smiled with joy as she held and played with Laticia and spoke to us all while doing so. Laticia received a fuzzy stuffed animal to add to her collection. After taking the family on a tour of the church we said our goodbyes. Besides making trips to malls and the bird sanctuary, It was all accomplished without upsetting Laticia’s eating routine.

Their visit came to an end so swiftly for it seemed like it only began. Marc and I hauled bags etc., and the SUV slowly filled to the roof for the return trip home. Upon returning home, Laticia is off to the distant teaching hospital to undergo a two day exam for a special diet that, if all goes well at the end of two years, her seizures should hopefully cease. While her daily seizures are not as severe as before the seizures do interfere with her healing and hopefully normalcy

Laticia loved to lay on her mat, move her arms and legs and roll over – no she cannot sit yet, that’s the next goal! However, she had already come a long way, the tightness of her muscles was beginning to loosen up, sometimes she could even grab one of her toys and make some happy sounds – no words, just sounds. She was very alert, looked at every- thing and responded beautifully to sounds, music and television. Yes, she had seizures, just about each day, but they were not too severe – what a sad experience to see her entire body shake and shiver and not to be able to help her. But anyhow, Laticia brought so much joy to our days. She is a very content and loveable baby, smiles easily and makes people contact, finding her way into everyone’s heart - but she still has a very long and very difficult way to go – Her need for prayers is as great as it ever was. She needs your prayers!

A thought for today and all the tomorrows:

God always gives His best to those who leave the Choice to Him.

Phil

Follow Me

Morning Mom

I'm Hungry

A Girl Got To Look Good

Got To Get My Exercise

That's Funny Gram

Hi My Name Is Laticia

All That Talking
Makes Me Sleepy

I Want You

To Meet

My Special Friend

Sister Matie

Jan & Dick
Sue's Mom & Dad

The Beach Bums

Thank You Lord, For Another Beautiful Week.

Tuesday, April 12, 2011

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

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.

Thursday, April 7, 2011

Prayers Needed - Got A Prayer To Spare

4th Posting consist of 3 E-mails To Laticia's Prayer Group

E-mail 2, 10-20-10

Hi Folks....Things have been a little hectic for Laticia as of late and attached is the latest I have received. If in the event I did not show you her latest toys, I have included photos of them. Please keep your prayers coming. I hate to think what her life would be without them. Phil ...Following is from the Ghost Writer

Dear Grandma and Grandpa,

I know I have not been so good in writing in awhile. As you know I have been having a terrible time with having seizures, I had another trip to hospital for a couple days to try to see if they could settle my seizures down. I have been given a 4th seizure medicine that make me very tired. The medicine is helping for my seizures have slowed down, but I pretty much have one a day. Some of the seizures are worse en others, for if they last more than 5 min, I have to get my injection that makes me very tired. My grandparents hate have giving me this injection.

Other then my seizures I feel pretty good, I really enjoy my new equipment, I get to sit straight, able to play with some toys on my tray. When I have a seizure free day, I have a lot of fun. I started cooing two weeks ago, just wait, it won't be long I will be able to talk up a storm.

I have a new babysitter who has a boy who is one. Logan is his name, we have a lot of fun. It is fun to have someone my size I can play with. Logan is very nice to me he talks to me all the time.

Grandma, Grandpa and I just came to Ohio to see my mom's family, they were all so happy to see. I have been getting really spoiled. I had a good trip in the car we stopped a lot so I could stretch. But after being in Ohio a day I got a little sick, it must have been all the excitement. I had a bad seizure today, where I got my shot so I had to sleep all day. I'm hopeful I will have a better day tomorrow.

I really don't have much to report except I'm trying, some days are good and others just are not so good. Doctors say it will take about 6 weeks for my medicine to start working, let's hope this helps because having seizures does not make me feel well. Oh I almost forgot, I have speech therapy that just came to visit me, and they say I have a lot of work ahead of me in order for me to eat. But the good news they will be coming to my house to help me so I can eat by mouth one day. We postponed my feeding clinic until Jan, in order for me to get feeling better. Keep me in your prayers that I can go to the clinic one day soon so I can get off this feeding tube.

That is all for now, I hope to get better with keeping posted. Please thank all your friends for keeping me in their prayers, and please ask them to continue for I still have a long road ahead of me.

Love Ya Laticia

E mail 3, 10 31 10

Hi,

Sue, Laticia's grandmother, was requested to prepare a statement, since the case will come to court this week. She sent us a preview copy and I asked her permission to utilize part of it, to try and convey her personal feelings about caring for Laticia on a day to day basis. My days of being a parent are long gone and once again, reading Sue's comments, takes me back to the daily struggles that parents have.

"I cannot put into words the daily heartache and sorrow that my family and I endure. I love Laticia very much and I am heartbroken when I look at her knowing that she will never have a normal life and never experience all of the joys of childhood that other toddlers and children experience. Laticia was born a perfectly healthy child on July 5, 2009. Her condition is not due to a birth defect, this was done deliberately to her. Her life has been stolen from her and my family’s life has been changed forever.

Laticia is now going on 16 months old. A normal 16 month old toddler would be walking, running, talking, and playing with toys. My granddaughter can do none of these things. Laticia is unable to hold her head up for longer than a few seconds; she cannot sit up on her own or roll over. The brain damage she suffered affected her esophagus and she cannot swallow and must be fed through a feeding tube inserted into her stomach. In order to live, Laticia must have the assistance of medical equipment. In order to receive nutrition she is fed through a feeding tube for 12 hours in the evening and again for a shorter time during the day. Currently she suffers from silent aspiration which causes her to choke and vomit, and has caused inflammation to her esophagus. She screams in pain numerous times throughout the day. We are unable to console her or take her pain away. The medical resolution is to sedate her throughout the day so she is calm and can sleep.

I know that our future with Laticia will be a very long, hard, and painful road. A good day for Laticia is when she can smile or hold her head up for a couple seconds. When I’m holding her I cherish those moments, but at the end of the day it is still heartbreaking and depressing to see her in the condition that she is in. Watching her trying to move or talk but unable to because of the injuries she has suffered is extremely upsetting. Living day to day not knowing if I’m even going to have another opportunity to put her to bed at night because one of her daily seizures could take her from us scares me. I have numerous sleepless nights due to Laticia waking in the middle of the night screaming in pain, having a seizure, and calling doctors."

Sue's thoughts touch my heart. Will you join me - especially this week - in saying extra prayers for Laticia and her family? Gratefully, Phil

E mail 4, 11 05 10

Hi Everyone

Good News! The father of Laticia, finally pleaded guilty the other day in a Court.

Doing so, brings to a close the long waited court case, and avoids all the heart aches that a court trial would entail. It also enables the family to get on with their lives, and leave behind them all thoughts of accusations etc.

I would like to ask if you will keep the father in your prayers too, and all those like him, who are paying for their actions behind bars. Hopefully the time they spend being incarcerated will change their lives with the Lords help.

Laticia's daily battle with seizures continues, so please do not relent in your prayers. Phil

Sunday, April 3, 2011

Prayers Needed - Got A Prayer To Spare

1 st E-mail to Laticia's Prayer Group, Aug. 14, 2010

Sorry to take so long in passing on some news about Laticia, but I knew I would be visiting her shortly, so here is the latest, from a one scared great grandparent.

She is now twelve months old, weighs approximately 17 pounds and 28 inches in length, while her size and weight may fit a normal child, her capabilities are such as 2 month new born.

Her improvement is moving at a snail’s pace. To further complicate matters are the seizures she suffers; some are more severe than others and a shot of Valium must be administered to her. The shot must be effective within a 5 minute period otherwise a 911 call must be placed. The seizures, whether mild or severe, interfere with her brain from healing. Family members that attend her have been able to recognize a small cry she makes just prior to the onset of a seizure. I sat through a number of them and while the family did what was required, I sat far away from the action taking place and said a few Hail Mary’s just so that she didn’t have to go to the hospital some 65 miles distant. The seizures come at any time even while riding in a car, or even while she sleeps. She can have them more than once a day for I have seen her have two in one day.

She is fed 4 times a day via her feeding tube in her tummy. 5am, Noon, 6pm and 10pm, the last feeding lasts all through the night, since the feeding rate is different. Water is administered the same way, because of Silent Aspiration. (The

possibility of food particles going into her lungs rather than her stomach.) The latest challenge for the family, Laticia has not be able to tolerate her feedings due to increase of seizures, and some digestive issues. There is a team of doctors that review Laticia’s case, and the doctor looking after her feeding, would like to Laticia fed on a 24hr schedule, but the family disagrees for Laticia would not be in a position to take physical therapy etc. She would have to be in her bed, on her back 24 hrs a day, and that would set her back from some of the small improvements she has made to date. So far the family has a number of doctors on their side. The feeding of this little lady is a big issue for she cannot swallow her food and gas is another constant issue, causing her great pain.

Now some good news..below are photos of her braces I mentioned in a previous message. The family refer to them as her dancing shoes, hopefully she will be able to do that one day…The family has just been notified that her "wheel chair" has finally been approved and they should have it in a few weeks. The wheel chair looks like a baby stroller. Laticia is also receiving a high chair, and a workout stand.

Laticia, on her own can lift her head and hold it upright longer than before, a big improvement. She also can roll onto her right side, and her determination is something to be admired when she reaches at her toys that are suspended from her floor play mat. She loves to be cuddled, and smiles easily, it appears to me that she has good hearing and eyesight, for she reacts to sound and will move about on her floor mat to watch Disney on TV. She has a couple of upper and lower teeth, and will give you good bite, especially if you get your finger in her mouth while trying to give her the pacifier. Ask Agnes when you see her.

I don't have to tell you that your prayers are greatly appreciated by the family members, for they realize that all that the doctors, nurses, and Laticia are capable of doing is only by the grace of God, so please continue your prayer efforts. They are sorely needed.

Phil

PS… Her grandmother is Laticia's ghost writer and will occasionally will send forth a message. I'll pass them along to you as well.

Here is a picture of Laticia being fed; Her "Dancing Slippers"; 1st Christmas and Birthday.