In times of adversity, it's often the shared struggles that connect us on a deeper level. When facing challenges, it can feel isolating but knowing that others have trod a similar path and come out stronger can be a source of comfort and inspiration.

Imagine a website dedicated to sharing the journey of a special needs adult child with medical conditions. Through heartfelt blog posts, readers are invited into a world of resilience, faith, and persistence. The stories shared are not just about struggles and unexpected events but also about the triumphs and moments of hope that emerge amidst the storm. One of the most powerful aspects of this website is its ability to foster connections. By sharing personal experiences, readers are reminded that they are not alone in their struggles. The realization that others have faced similar challenges can be a source of solace and motivation. Through these inspiring stories of resilience, readers are offered a glimpse into the power of perseverance and the strength that comes from holding onto faith during difficult times. Each post serves as a testament to the human spirit's ability to rise above adversity and emerge stronger on the other side. As readers navigate through the blog, they will find themselves drawn to the authenticity and vulnerability of the stories shared. Each post is a reminder that even in the darkest of moments, there is always a glimmer of light waiting to be discovered. So, to those seeking hope and inspiration in the midst of their own struggles, this website stands as a beacon of resilience and connection. Through the power of shared experiences, may you find the strength to persevere and the faith to believe that brighter days are ahead.

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Our Journey

Our journey began 34 years ago. My daughter was only 11.5 months old when I was awakened by a scream from my baby. I flew out of bed and ran to her room to find my little baby girls body convulsing. I was only 21 and have never seen anything like this. I snapped her up ran to my room and yelled fo my husband to call 911. I ended up calling 911 but my husband said we could drive to the hospital faster than the emergency crew could get here as the hospital was only 3 miles away. So, I hung up grabbed my robe which could not have been any shorter, got into the car turned on the flashers and drove as quickly as we could to the ER. While speeding to the hospital my daughter stopped convulsing and became limp. my heart sank. I though she died. I was so scared and in disbelief.

Once arrived my husband took her from my arms and ran into the ER and the staff was quick to act. While this is happening, I'm sitting in the car wondering what the hell just happened, maybe in a state of a shock or disbelief. I'm not sure, but after what felt like minutes which I'm sure was seconds, I ran into the ER to be with them. I sat in the patient visitors chair while my daughter was being treated by the nurses still wondering what the hell happened. Then realizing my robe was extremely short when a nurse asked me if I would like gown to cover up with. Yeah, that was uncomfortable but relieved that my parts are no longer showing. The nurses asked what happened and we shared what we saw, and they took her vitals and temp and that is when we learned she had a temp of 108 degrees. The nurses began to cool her body down with wet cloths and I believe they gave her some children's Tylenol. They said they think she had a febrile seizure. Met with the Doctor who confirmed that our daughter had a seizure from the high temperature. I don't remember what caused the fever but once her temperature was down, they released her to go home with follow up directions and maybe a prescription. This is the beginning of our ongoing journey.

Lesson learned. Take your child's temp seriously and check on them throughout the night. First time seeing a seizure can be scary but it's important to stay calm and get help. Next, you may want to wear pajamas to bed or have a long robe next your bed for the next situation as you never know when the next emergency will happen.

My following blogs will be broken out into sections hoping I can reach other families that have experience similar events or is currently going through similar situations.

• Uncontrolled Epilepsy

• Mentally Delayed

• Vagal Nerve Stimulator

• Deep Brain Stimulator

• Brian Bleed

• God

• Recovery

• Appendicitis

• Cholecystitis, Gallbladder

• Kidney Stones

• Nephrostomy Tube

• Osteoporosis

• Recovery

Parents, friends and family of a child with special needs I look forward to hearing of your struggles and perseverance.

Good morning,

Age: 1-5, Unfortunately Kayla continued to have grand mal seizures and once she had a seizure without a fever her doctor put her on medication, which I believe was called phenobarbital and suggested we get in touch with a neurologist. well needless to say the medication did not seem to be working. Kayla would sometimes have multiple seizures a day which would require a hospital visit. There were times when the nurses would be waiting for us. They would take here once we arrived and inject here with a medication to stop the seizures and admit her into the hospital for two to several days. So scary! Kayla is our first child and my husband, and I have never seen anything like this. She was she keeping us on our toes and introducing us to many experiences we never thought about.

This cycle continued. Her Neurologist would adjust her current medications and or add medications, but nothing really seemed to control the seizures completely. The grand mal seizures would cause Kayla to fall creating many injuries from breaking her nose, lacerations that required stitches and many burses. Not only did the seizures cause physical injuries we began to see changes in her behavior similar to what you would see with a hyperactive child and or a child with autism. However not sure if the behavior was caused from the seizures or from the medications. I remember the Neurologist telling us that once she starts school it ought to be very interesting. Well, he was right. When Kayla started kindergarten, her teacher thought Kayla needed to be tested as she felt Kayla was not at the level she should be. With said, we learned that Kayla was mentally challenged and that she would be better fit for a school that offered a special needs program. This was hard to swallow. Kayla seemed to do all growth stages such as crawling, walking, and talking when if not before the estimated age. So, it was a little hard to believe that she was challenged. Her dad took the mentally retarded diagnosis extremely hard. He did not want to believe that our daughter was special however, after several days he began to accept it.

Parents, our children will provide us with so many new experiences and put us into positions we never saw ourselves or thought we would be experiencing. Parenting is a blessed journey, and everyone's story is a little different.

Kindergarten through eighth grade was interesting.  Kayla continued to have seizures weekly and Neurologist continued to adjust her medications, but nothing seemed to work. Furthermore, she displayed many behavioral issues at school from tipping over desk and throwing chairs to spitting in the principles face.  Which of course led to suspensions.  she had many suspensions however my husband, Kayla's dad felt suspension was more of an award then a punishment so Kayla's dad asked the school if she could stay at school if he sat in back of the classroom to ensure she acts appropriately.  This did seem to help some. However, this was not her only problem. 

Kayla was more of a loner who really struggled to make friends.  Kids can be mean.  There was an incident where kids had her eating cheese out of the trash and they would laugh so Kayla would laugh thinking it was funny and maybe she felt she was making friends. I don't know, but it was heart breaking.   She would tell us that people would be making a plan on her. Her dad and I would ask her what she means but she would just say that other kids were making a plan on her and maybe they were. I don't know.  Not only did she have trouble with making friends, but her bus driver would also have issues with her.  Kayla is on a lot of medicine, with said, they make her tired so many times she would fall asleep on the bus and the bus aid would become upset with Kayla, move her to the front of the bus and tell her she needs to stay awake however that was not the only thing the driver did.  She put Kayla in a car seat that was not for her size so when they dropped Kayla's dad greeted her and asked what was wrong, Kayla was hysterical, and he asked the driver what was up while the aide was yelling out the window that she did not do anything.  OMG! They were cruel idiots. Imaging what would have happened being restrained while having a grand-mal seizure.  I was so livid. I took the issue up with the school and was assured that she would have a different driver.  

It's so hard to trust others with your loved one.  No one cares for your child like you do. 

The summer of 2004 was nearly one of the worst summers ever.  Kayla was swimming and I was sitting at the table on the phone with a friend of mine when I noticed it was quiet and when I looked to check on Kayla she was having a seizure in the pool.  I dropped the phone, jumped in, grabbed her and took her to the stairs. Once at the stairs she was coming out of the seizure now she was limp, and I thought to myself how in the hell am I'm going to get her out of the pool.  Kayla was 14 and approximately 5'1 so not much shorter than me so I began to yelling help hoping someone would hear me. About 5min later my neighbor looked over the fence and asked if everything was okay, I asked her to get my husband who was down the street visiting some friends. Jimmy came running and helped me get Kayla into the house.  Well, I thought the horror was over. Wrong!  it was just beginning.  Kayla was resting on the couch, but her breathing did not seem normal it sounded a like she was a little congested a few minutes later she went into a seizure that's when we thought we need to take her to the hospital to get checked out well thank goodness we did she went into multiple seizures, and I'll never forget her body I swear jumped nearly 3ft off the bed her seizures were not slowing down this is when the doctor thought it was best to transport her to the children's hospital.  The ambulance arrived to transport her but did not feel comfortable doing so and suggested she be transported using air medical rescue. Kayla was transported to Saint Josephs, level one trauma center.  Finally, the seizures subsided but then she developed pneumonia.  A week later we were able to go home.  Lesson learned, seizures and water is no joke.  When children are in water it's so important not to allow for other distractions that take your eyes off the child / children and or anyone with epilepsy.   Year 2011, Kayla was 20 years old when her neurologist suggested the Vegal Nerve stimulator (VNS) to help control Kaylas seizures.  The VNS sends electrical pulses to the vegus nerve.  The VNS was a great option for Kayla. She was almost seizure free for nearly one year.  However, that was short lived.  Her seizures were back so medications adjustments began and continued for the next several years. It's funny how the seizure just became the norm.  However, they kept us on our toes. Even though you knew she was going to have them you wanted her to live the best life she could with this disease. With said you could also expect Kayla to end up with some kind of injury. It was October 2018, Kayla had a neurologist appointment and here is when we learned about the Deep Brain Stimulator, (DBS). The Neurologist felt it might be a good option to treat Kayla's seizures.  I was excited to hear about this, so we met with the neurosurgeon to see if this is a good option for Kayla.  He believed it would be and we so excited that Kayla has a possible chance to be seizure free.  Are hopes were high.

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