Tuesday, April 17, 2018

Hard Work

                 I am writing this post not for sympathy for Jacob or I but for awareness.

   I have many friends and family that aren't aware of all the health issues Jacob has had all his life so
hopefully this will help people understand we aren't "making excuses". Jacob is my youngest son and
the only one I carried full term so his delivery was different than my other two, a C-Section. He weighed almost 10 lbs. was healthy and I got to bring him home when I was discharged unlike my other two. I noticed the slam bamming of my two oldest wasn't startling him and I was getting concerned so when the nurse came to check on him I told her my concern. She did several "sound"test and got no response from him. We have an awesome pediatric team that listened to my concerns and sent him to an audiologist. After several visits and various hearing test I was told he had significant hearing loss. So Jacob got his first hearing aides before his first birthday. While all the hearing testing was going on I kept saying his head was big and a friend said that was normal because I had him by C-Section but again our pediatrician noticed his head measurements were increasing so we saw the neurologist. After a Cat scan I was told he had Hydrocephalus (water on the brain) and was going to need brain surgery. There were two options, laser to try and open a hole for the fluid to drain off ,which if it worked had less complications or place a shunt (which drained the fluid into his stomach to be absorbed) in his head .The complications with placing a shunt are it could stop working at some point and have to be replaced, infection at the surgical site,  shunt infection and seizures. Hearing all the complications we opted for the laser praying that would be the only brain surgery he'd need. So at seven months I handed my baby over to the surgeon praying that my baby would be ok. The surgery went well and we had to wait now to see  what would happen.Up to this point I still didn't know much about the effects of Hydrocephalous and now I can admit I was in denial that Jacob would have any problems because of Hydrocephalous or the hearing loss.
    After waiting for three months to see if the surgery helped Jacob I was given the news it hadn't helped so a shunt was needed which meant another brain surgery. A programmable shunt was placed which meant the doctor could change the opening/closing to control the amount of fluid was being drained without doing more surgery. Everything was leveling out with Jacob so I could breath and we began speech therapy, occupational therapy and sign language. After talking to many therapist and counselors I decided to mainstream Jacob. For those who don't know what that means basically he would be treated as a normal child. I didn't want him to use his hearing or Hydro as an excuse not to do thing, plus yes I was still in denial. As he transitioned into daycare his therapist would come to him. We stopped with the sign language,which I am kicking myself  now for not keeping it up and Jacob has lost significant hearing in the past two years. When he takes his hearing aides out he doesn't hear anything. That makes it kinda scary for him and I to be honest. He's been accepted to receive a "hearing" service dog and is on the waiting list.
    So life seemed to be going well for Jacob and then in the summer he was going into first grade he started stiffening up and dazing off only for a few minutes but one day I took him to his grandmother and before I could get to the end of the road she called to say we needed to take him to the hospital.Jacob had his first ambulance ride that evening up the mountain to the hospital where his neurosurgeon was. After checking everything out with Jacob the doctor said it looked like the shunt was good but he could go in and check for possible blockages not showing up on scans. Scared for my baby and at the hospital alone I chose that option. Brain surgery number 3 was done and everything looked normal so Jacob was sent to I.C.U. since we still had no answers. I saw the neurologist and the next few days after many test I was told he had Epilepsy. My heart dropped because the only thing I knew was seizures could be dangerous if not controlled. Another journey we would have to go on and learn along the way. I had to change some of our eating/drinking habits to help Jacob become seizure free (No Caffeine including chocolate or artificial sweeteners).
    Still in denial about the effects of Hydro we went on about life as normal as possible. He wanted to play baseball and I asked the doctor about it and his response,"As long as he wears a helmet through the whole game". Nope I wasn't going to have him stand out from everyone else so no baseball. He did play basketball on an Upward team at church till he aged out then he tried a rec team one year and didn't like it.
    I decided to homeschool him starting in middle school because even though the teachers would sit him up front when they turned and he couldn't see their lips he wasn't hearing them. He had become a great lip reader. I still in denial about him having defiencies due to his Hydro would get discouraged and felt like maybe I wasn't doing something right. But when we did his yearly testing he was getting it. Health wise he was doing well,life was good.
   One day Jacob told me when he turned his head he could feel "buzzing" in his head. Concerned but not wanting him to see how scared I was I calmly started researching Hydrocephalous and asking him many questions. I called his neurosurgeon and they were able to see him within a couple days but explained we could take him to the E.R. Jacob said it wasn't bad enough for E.R. so  we took the appointment. At the office they ran a shunt series which is a series of x-rays to check the whole system. Jacob's shunt is on the right side of his head with the tubing running behind his ear,down his neck and chest with it ending in his stomach. After the series was completed and reviewed by the doctor we got the news we didn't want to hear.....tubing had come loose from the shunt and not sure how long it had been disconnected. This explained Jacob's memory loss,staggering and several other thing I blew off as being a teenager. He was going to have brain surgery number 4 and reality slapped me in my face. Feeling helpless I turned to the internet for answers. My church family wasn't aware of Jacob having a shunt because of my denial and wanting him treated "normal". We received this news on a Wednesday and the youth were having a pool party. Jacob had to miss it because of hospital registration and he chose to wait until Saturday when his doctor could do the surgery. I worried,prayed,watched him like a hawk, prayed and researched for the next few days. Surgery went well and they were able to just reattach the tubing but if it came loose again the whole system would have to be replaced.
   Shunt taken care of now back to the hearing.....significant sudden loss of hearing when Jacob was 16. Audiologist and ENT very concerned recommended getting his shunt checked out. Shunt checked with no problems so now hearing is really bad even with the hearing aides. When Jacob takes aides out he hears NOTHING which can be scary. I have been surprised how many people don't know Jacob wears hearing aides but that just shows how much hard work has been put in by him with speech therapy. So when Jacob doesn't answer you or just smiles and nods his head he's not being disrespectful he probably didn't hears you or couldn't read your lips.
   Upon multiple testing we have discovered that he can comprehend a little better if something is read to him versus him reading it. He can't be given multiple command ( take the trash out, feed the dogs and do your laundry). He can't remember too many thing before his last brain surgery which is sad because there's many great ones. These aren't excuses that are made for him they are documented by several doctors. He and I have learned a lot about Hydro and try to share anytime we can. We will be learning sign language now since the hearing is failing but we know the God's got this and we're strong in our faith. A hearing service dog is in his future too.
   Sorry for the length but I felt the need to share. God bless and have a great day.







Friday, March 9, 2018

The Star DVD

"The Star"a tale of faith and friendship, is now available on Blu-Ray,DVD and digital.For those who don't know what the movie is about it's an animated comedy that follows a small brave donkey named Bo. He wants more out of his life than just the daily grind at the mill so he breaks free and his adventure begins
There's many bonus features included with the movie.
Star-aoke: Sing-Along with Bo & Friends: In this all new song, sing along with your favorite characters including Bo, Dave, Ruth and the unforgettable camels
"Life Is Good" Dance-Along: Shake your tail feathers and move your hooves in this fun dance along
Lyric Sing-Along Videos: Enjoy the eclectic and inspiring music of THE STAR with these colorful lyric videos that allow you to sing along with your favorite recording artists

o        “The Star” by Mariah Carey
o        “Can You See” by Fifth Harmony
o        “Children Go Where I Send You” by Kelsea Ballerini
o        “We Three Kings” by Kirk Franklin
o        “Life Is Good” by A Great Big World

  Sweet and Sparkly Stars: Create star-themed cookies to be enjoyed year round
Star Mason Jar Votives: Let the light of THE STAR shine with this simple yet stunning craft
 Faith All Year Round with DeVon Franklin: A children’s sermon discussing the themes of the film and how to keep the spirit of this inspiring story alive in us every day
An All-Star Cast: Meet the stars of the film and explore the exciting voice cast who bring these amazing characters to life

Faith All Year Round is an interactive guided Bible study with DeVon Franklin and even as an adult I thought it was awesome.It's provided through Facebook messenger ( https://www.facebook.com/ TheStarMovie/photos/a. 1958428107734532.1073741828. 1855936074650403/ 2111080512469290/?type=3& theater )  and I can  hardly wait for the next lesson.


This movie is definitely being added to our favorite collections.For anyone interested in buying this movie there are several ways to purchase.

http://sites.sonypictures.com/thestar/discanddigital/?hs308=TSR084D


We would recommend the movie and the Bible study with DeVon Franklin.Have a blessed day and enjoy The Star







Wednesday, March 7, 2018

March Already?????

It's hard to believe it's March already.It's been rainy and gray here in NC a lot in this first week. I'm like a lot of others I know....bring on Spring.Yes that means pollen and lots of yardwork but we've had a very cold,don't open the door, 5 layers of clothes winter so ready to escape the house. One day this week was beautiful so I pulled the blower out and began blowing leaves.....and the winds started blowing. Oh well blow in the same direction as the wind.My mom bought Jacob a riding lawnmower and a trailer last year so he was happy to hook up and gather leaves.My oldest son and my mom heard me in the yard working so it didn't take them long to get started as well.(I think we're ALL sick of sitting in the house).
We went to SC to see family and let Jacob spend a week with one of his favorite cousins in his favorite community.The pollen there is so bad everything is yellow.Our cousin said she couldn't hardly tell which car was hers in the parking lot because of pollen. Ha ha! It was beautiful while we were there but as we headed home....you know it.....rainy and cold. Glad God knows what we need cause I sure wouldn't think we needed anymore rain.
Blessed to live in North Carolina along the route Billy Graham was driven from The Cove Training Center to The Billy Graham Library.Mom and I went and saw the motorcade and paid respects but Jacob(who really wanted to go to the Library) had construction training with the mission team. He has watched and/or recorded just about everything that's been on TV about Mr. Graham.I thank God for all He's done in Jacobs life.
Well Spring cleaning/purging here I come while Jacob is away. Hope everyone has a blessed day.

Monday, January 1, 2018

Good-Bye 2017........Hello 2018

Reflecting back on the past year brings laughs,smiles,tears and heart-aches. As I remember Jacobs

milestones like graduating high school I'm a proud momma. I know God had both of us during this

homeschool journey and I thank Him constantly for all He does. College is our next journey and

I know Gods got that too. Jacob being deaf/hard of hearing has caused him to delay going off to

school for now. We are in the process of trying to get him a "hearing" service dog because when

Jacob takes his hearing aides out he hears NOTHING. We had to wait until he turned 18 and it is a

process that takes a while to see if he's eligible.

We've traveled less this past year due to health issues amongst all of us but we did travel to

Ft. Payne, Alabama to visit our cousins. This was a new town for us and we are ready to go back to

explore some more.







We also went to Chickamauga, Georgia to the battleground. My aunt was born and raised in this area

so it was pretty awesome to visit her hometown. We didn't get to go in the museum because it was so

late in the afternoon but the ride checking out the monuments was great. We got a special

treat.....DEAR. We got to see several dear throughout the drive.





Camping, canoeing, camp fire, putt putt was also a "new" adventure for Jacob and I. Yes he was in

the Cub/Boy Scouts but I've been in a wheelchair since he was four so I've never been camping

with him like I did with my older sons. We had a blast.




So as we start 2018 we pray for all a healthy happy new year and may God bless you all.
 
 

Monday, December 18, 2017

Need Stocking Stuffers?????

Last minute stocking stuffers? These Magic Stix washable markers are the perfect addition to the

stocking. They are odor free, bright bold colors and the best thing is they are guaranteed not to dry

out for 7 days if the cap is left off.  Not sure about the rest of you but I've thrown numerous markers

away because the kiddos left the cap off and they dried up.

Magic Stix are available on Amazon.com in 12 packs and 24 packs. They are in a nice hard plastic

case for storage.

They have a fie enough tip to color those small tight areas but large enough that bigger areas don't

take forever to color. There great for various crafts as well as coloring and adults enjoy them as

much as the kiddos ((I know because I LOVE them)








Merry Christmas
and
Happy New Year!!!!!



Wednesday, December 6, 2017

Fall Journey's

Wow it's been a while since I added to the blog. We did get our trip to the apple orchard in.Of course we ended up with more apples than we planned but it's so much fun picking them. Jacob and I have made Apple Sauce, Apple Butter, Apple Chips,Apple Scrap Jelly and made Apple Pie filling for later. Yes my house has smelled heavenly


                                          A lot of apples on the ground from the remnants
                                          of the hurricane

                                                           Jacob is in this tree

                                          What a view
                                                           We have been coming here for 20 years
Jacob's 1st orchard adventure

We took our trip to Dollywood in October for the Gospel & Harvest Celebration. We spent a couple days in Tennessee so Jacob could spend more time seeing some different groups this year. I am blessed that he loves Southern Gospel music versus some of the other music out there.

We really had fun looking at all the cool Halloween stuff they had this year.






We also went to The Island at Pigeon Forge which was decorated so pretty for Fall.



So we have been busy but so blessed that we can stay busy. Never give up on your dreams,family,life or God



Wednesday, November 15, 2017

Review of Forbrain

Forbrain Sound for Life LTD
Jacob has been hearing impaired all his life and wears hearing aids so when we were given the

opportunity to receive, use and review Forbrain I immediately signed up. Jacob received speech

therapy until middle school and many people couldn't tell he was deaf/hearing impaired. I've noticed

a slip in his speech the past few years, he's now 18, and have thought he may need to return to

therapy but when I learned of Forbrain I thought I'd give it a try first.

What is Forbrain?

Forbrain, by Sound for Life LTD is a headset program designed to help people who have speech

difficulties, language issues, attention deficiencies and memory difficulties. The Forbrain headset

uses your voice to give your nervous system a "workout". Using the audio vocal loop your voice

is transmitted through bone conduction. The Bone Conduction Transducer sits on the temporal

bone in front of the ear. The  microphone on the headset transmits your voice through the dynamic

filter then to the transducers. Forbrain  improves activities such as reading comprehension even

more productive workouts at the gym. An increase in self-confidence is made possible by reducing

sensitivity to noise and become more in touch with your own voice. 20 minutes a day is all that's

needed for improvement of speech, focus, memory and coordination.


Forbrain Sound for Life LTD
Some suggestions for use are:

For Me
  • Musicality : Sing aloud the text you are reading
  • Rhythm: Read a poem while taking a breath at the end of each line
  • Flow : Read a text while taking a breath every 3 or 4 words irrespective of meaning and punctuation
  • Diction : Read a text while exaggerating sounds as if you were making a speech to a crowd
  • Accentuation : read a text while changing the volume of your voice every 5 seconds from very faint to loud and vice versa
  • Memorization : read a text aloud and repeat it immediately without looking at the text
  • Dialogue : read a comic book or a dialogue and give each character a unique voice

For a child

  • Accompanying : you read the text slowly at the same time as the child without pausing for his/her mistakes or hesitations
  • Echo: you overlay your voice on the child’s, who reads with ± one second lag to slow down or speed up his/her speech rate
  • Memorization : you read a group of words, sentence or line of poetry that the child repeats immediately without reading
  • Dialogue: you read a comic book or dialogue alternating characters with the child and accentuating differences in voice
  • Invention: you create a story with the child, from images or figurines, taking turns inventing a sentence of dialogue
What's Included?

The headsets come with a rechargeable battery and a USB cord for charging. Included in the nice

zippered hard case along with the headsets are extra microphone covers and a quick start guide with

directions on posture when using Forbrain . There's also a more extensive Users Manual included.
Forbrain Sound for Life LTD

How Did We Use It?

Jacob wore the headsets and read scripture throughout our six week review time. He liked being

able to hear himself reading and I did notice some improvement with his speech. Hoping he will

continue to use these headsets.

Would We Recommend?

Yes I think they are really awesome. I'm going to try to get my mother to try them for improvement

of her memory.

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To read reviews of other crew members click on the box below



Forbrain {Sound For Life Ltd Review}