Keely Skinner was born in August 2008, a beautiful healthy baby girl. Daddy gave her the nickname ’Tiny Kidd’ before she was even born, and it has stuck ever since. Her parents, Nick and Misty, were excited to start their journey into parenthood with their new bundle of joy. They were just starting to get adjusted to new schedules and routines when everything changed. At four weeks old Keely almost lost her life, she was rushed to the hospital with high fever and seizures. They ran numerous tests, and pumped her body full of all the antibiotics they could. Her seizures kept increasing, the fever would not go down for several days, and her head just seemed to continue to swell. Her seizures got so bad we could not even handle her because any little bit of stimulation she had, sent her into a seizure. It took them 5 days and almost a 100 seizures later to find the right dose of medication to control them. A couple days later, they finally had some answers for us. Keely had come down with a severe form of Meningitis (severe infection located in the fluid around the brain) which then progressed into Encephalitis (severe infection directly on the brain) which was instantly killing parts of her brain. Finally, the doctor uttered the best words we had heard all week, “She’s NOT going to die!” Praise Jesus! We told her all we care about is that she is going to live and that we could handle whatever was about to come next. The doctor told us that this particular infection is in the body for a week or two before it starts showing symptoms, so by the time symptoms start, the infection is so much further progressed that chances of survival are slim. She told us we were lucky we brought her in when we did because she almost died. Doctors were unsure of Keely’s future, they told us because of the damage done to her brain she could suffer from any or all of the following: developmental delays, paralysis, blindness, deafness, mental retardation, seizure disorder, and the list went on…. We were overwhelmed with the thought that our perfect, healthy, little baby’s life had just been drastically altered. God allowed us to keep our baby girl and for that we are forever grateful. Right then, we knew God had a greater plan for Keely then we could ever imagine, so we put our faith in him that he would raise her up to be a miracle and a witness to all! Keely was truly BORN AGAIN!
Keely was finally discharged after a couple of weeks into the care of Home Health, where we had to administer her IV medication treatments, feed her through a tube in her nose, and basically everything else that a nurse would do. This was so scary & stressful, worrying if we would remember the processes, praying she wouldn’t get another infection from her PICC line, or hoping her feeding tube wouldn’t get out of place so we wouldn’t have to put it back in. Staying organized was key.
Keely had many more tests, a couple more hospital visits and acquired several new doctors. She also started physical, occupational, and speech therapy which she now receives four times per week. Keely does suffer from developmental delays, tremors, sensory damage, and a chronic seizure disorder. At the age of two, physically she is still a newborn. She cannot sit up, roll over, use her left hand, and her head control is not a 100%. However, Keely continues to rise above the challenges. Her eyesight and hearing are great, her comprehension is somewhat more advanced than her physical and she continues to learn. Keely’s seizures returned at about 3-4months old, having multiple a day. She’s growing so fast that she quickly out grows the dose she is on, so medication changes are frequent. Then medications didn’t seem to be working anymore, she was tried on several medications and still continued to have multiple seizures a day. Along with the seizures, the medications were taking a toll on her. The seizures became out of control, she was getting no relief from the medicines. Her neurologist was increasing and adding to her medications on a weekly basis and she ended up on extremely high doses of several medications at one time causing many problems. Any little bit of progress we were starting to make with her head control, vanished; her neck was as unstable as a newborn baby’s, and she was a year old. She was tired all the time, irritable from both the medications and the seizures; her tremors had also increased along with numerous other side effects she was experiencing from the meds. Her neurologist decided to refer her to the Cook Children’s Hospital in Ft. Worth, TX for further testing.
November 2009, we had some concerns about Keely aspirating. When they did the Dysphagiagram (swallow study), they did confirm that she was silent aspirating (which means she did not choke when she would aspirate) and declared that it was unsafe for her to eat or take medicines by mouth. They immediately admitted her into the hospital where they performed more tests and then the day before Thanksgiving, they performed G-Tube and Fundoplication surgery. Keely is now fed by a tube directly in her stomach (the G-Tube). The Fundoplication part of the surgery is where they took her stomach and wrapped it around the esophagus so it would prevent her from aspirating any reflux. Because of the new way of feeding Keely, she receives monthly food and medical supplies from Home Health. This was a whole new learning experience, it took two months before we could get Keely’s tummy used to being fed through the g-tube, establish a good feeding schedule, and get ourselves used to the new process. This definitely came with many complications.
January 2010, we finally made it to Ft. Worth, TX where Keely was admitted to the Cook Children’s Hospital for a week. She was hooked up to a video EEG monitoring system that would monitor her brain activity 24/7. She also underwent several other tests throughout the week. Finally, the doctors were able to see what we see everyday and give us some better answers. There were several things we learned. First we found out that she has 2 different types of seizures that are occurring on all hemispheres of her brain. She has Complex Partial seizures, which is where she is not aware of what is happening or aware of her environment during and even several minutes after the seizure. The second type are Simple Partial seizures, which are ones where she is completely aware of her surroundings and what is happening but they seem to affect her right arm. We also found out how many she would have in a day on medications and off medications. On her medications she had about 15-17 seizures in a day. When they weaned her off her medications she had about 32 in a day, so the medications are only able to control about half of the seizures. Her MRI told us more about the parts of her brain that were damaged from the infection. Unfortunately, they told us brain surgery would be the best option to stop the seizures completely but they discovered she would not be a good candidate. They said that the most damage was in the area of her motor skills and because of that they did not want to jeopardize her ability to one day be able to walk, to be seizure free; so they would explore other options for her seizures. They also told us there was damage right next to the area of speech so she may have difficulty with that area. She also suffers from sensory damage, which we will try to help with occupational therapy. Those were the main concerning areas, the other areas that were damaged he said will not have much effect on her. The doctor confirmed what we already knew and that was that the area of comprehension was totally untouched! This explains why she is always observing everything, and you can just tell that she understands and catches on to something quickly, it’s just physically she can not respond. The doctor said we have until the age of 10 to be aggressive with her therapy in hopes to re-route the pathways of her brain. The doctor wants to try her on a few more medications before we move onto the next set of options for her seizures. The goal is to get her seizure free or only having 1 or 2 a day so that Keely will have a chance to learn and move forward.
To sum up the precious Tiny Kidd’s life, she continues to go through therapy, doctor visits, medication changes, tube feedings, tests, medical trips to Texas, and needing special equipment to succeed in her life. Being a child with special needs, her life is very complex and comes with many challenges but it also comes with many celebrations. Every little thing that she does is an exciting moment not to be taken for granted. She does wonderfully with using her right hand and shows signs of wanting to use her left hand. She’s not speaking or even making consonant sounds but she does still make baby sounds so we know her voice works. We have been teaching her sign language and she has just recently started communicating through that. She is potty training herself using sign language to tell us when she needs to go potty! God is good! She laughs and smiles and knows who people are. She is very social and loves everyone she meets. She continues to show us God’s amazing love and how blessed we are to have her as our little Tiny Kidd. Through all life’s challenges, Keely remains to be the happiest, most loving child; inspiring and touching the lives of everyone she meets. “Tiny Kidd,” is a true hero and a blessing from God.
God Gave Us Keely, Keely Gave Us Meaning, Love Never Fails.....
