Meet Tyler-Ray

"The Turtle!"

Tyler-Ray was born on April 22, 1996 at Bowling Green, Kentucky. He weighed 7 lbs 6 ozs. I had a fairly good pregnancy. I was extremely sick and nausea during the 3 - 7 months and had to receive fluids 2 times for dehydration, but other than that ok. He was a repeat Caesarean so when I began to dilate and have contractions, the doctor scheduled the delivery date. He was 38 weeks. I had an epidural so that I would be awake. When they took him, the doctor said he was a handsome boy, I kept asking why he wasn't crying and they said he is. When they brought him to me, he was crying some but he was very hoarse and his cry seemed to tremble. They took him on to the nursery and my mom and my 16 year old kept telling me he was ok. After I got to the room, they brought him to me.

Of course, I counted his toes, fingers and checked him out from head to toe. He looked "perfect". Then I tried to nurse him. He latched on but he would only suck a couple of times and stop. Then he would start again. I thought that it was just his way of starting. Then all at once, he began to cry and nasal vomiting. I freaked, the nurses came and took him to the doctor. As I was panicking, the doctor returned with tyler and said "it is normal". He is just weak from delivery. He also made a really strange yet cute noise as he breathed. At three days it was still "normal" and the nurses had even suggested that I keep him at all times because his cry was so weak that they couldn't hear him in the nursery and he had almost strangled. Nothing stayed down. I phoned my daughter's pediatrician in Nashville, Tn. and he said "not normal."

He was born on Monday, I was dismissed on Thursday and our 110 mile round trips began. At 10 days old we began feeding cereal mixed with my milk. This helped a little, but he still had persistent nasal wash back and low low cry and "wheezing noises". If I ever laid him on his back to even change him, he would strangle. We fixed his changing table to set at a 75-80 degree level so that he never laid flat. I slept with pillows to support me up in case I fell asleep, which was very seldom, and Tyler-Ray laid on my chest constantly. We traveled the trip to nashville, every 3 days for two weeks. Then when he just wasn't "thriving" and weight loss, our journey began. Tyler-Ray was 7lb 6oz at birth, his APGAR scores were 7, and home weight was 6 lb 8 oz. At 4 weeks old, 7 lb we began testing. After the first swallow of an upper gi mixture, the radiologist came running in and yelled STOP, do not let him have another drink, I seen enough. I about lost it. He said his swallow in very abnormal and he is aspirating, which at the time meant nothing to me, and he has gastroesophageal reflex. Rapidly I began to learn to stop them and ask to talk at my level.

We were admitted to Vanderbilt Children's hospital within the hour and this became our home for the next 2 months. He was npo, a nasogastric tube was placed following a videofluoroscopic study. Several tests, MRI, and lab works. 5 days later he had his first surgery.

First, they discovered a severe latex allergy, we almost lost him there, he went in at 7 lb and came out at 11 lb!!!! They discovered his heart was enlarged. Surgery, Nissen fundoplication, umbilical hernia repair, 2 inguinal hernia repairs, circumcision, and gastrostomy tube placement. He had apnea spells 3 times. PICU for 3 days, then as we got in room, apnea spell in my arms! back to PICU. The doctors didn't give me much hope and could not find a reason for all his problems. (history of family- I had a 11 year old daughter and a single mom, dad decided he didn't need another child and when he found out tyler wasn't "perfect" he decided to hire an attorney to terminate all parental rights. My parents took care of Dawn and brought her to visit when possible. and my time was solely to tyler)

Tyler-Ray was given a diagnosis of "unknown syndrome" for the time. He had a swallowing disfunction, gastro-reflux, failure to thrive, hypertelorism, widows peak hairline, an extremely small chin, broad nose, ears are uneven and low set enlarged heart, severe hypotonia, stidor attacks, and still a very weak cry, and he was always anemic. He was released to go home after 2 months and noted that survival was very unlikely. We had home health nurses come in to help with the monitors. He was on an apnea monitor until he was 2 and 1/2 years old. We had monthly video swallow studies. I continued to use my breast milk only for the feeding pump due to the doctors advise that this would give him a better start. He was on a continuous feed so, i had to pump every 3 hours on the clock. The good Lord blessed me with enough milk supply and somehow the strength to continue without sleep. A MIC-KEY button was placed 2 months after surgery. I was allowed to begin to nurse him 2 months later at a slow pace and continue with bolus feeds between.

He had repeatedly ear infections, and bronchitis, and even pneumonia and hospitalized several times. There were many close calls, but with God's help and strength we were able to cross each obstacle. Obvious developmental delays were noted and mom's radar was very active, comparing what dawn was doing at this age. Doctor visits and nursing visits became part of our lives and swallowing tests were done routinely. Finally, 1 year later, wash back was noted minimal and we were able to remove the mic-key button. He was still nursing (until he was 3 years old) as this was his only meal he would take for sure. He did like cereal and some baby food, but he was so weak that he would try to eat and tire out. So nursing was on demand schedule. He continued to have several ear infections and sinus infections. We encured lots of gastric leakage, which in part was a big factor in removing the button. He had to be cauterized several times and we had to change to button several times because the acid would eat a hole in the balloon. The stoma would not heal on his on and finally had to be surgically closed at 18 months old.

At 19 months of age, Tyler-Ray was still unable to talk, unable to crawl , unable to pull up, and could hardly even hold small toys. He gooed and babbled lots and had to most precious soft laugh. He often slept 16 hours of 24 hour day. We were referred to First Steps, a home therapy based rehabilitation now, and he began speech, occupational, physical, and interventional therapies. He then was hospitalized for RSV and more genetic testing was done. He was also noted to have s spilt uvula, short palate with sub hole and a weak and floppy epiglottis by tracheoscope . He has been questioned to be autistic lots, but he is very attached to me. He shows me affection. He does become distant at times. They did cystic fibrosis testing, ph probes, nuclear radon tests, barium, EEG, echocardiograms, and still nothing conclusive. The genetics team concluded that he had an L-carnitine deficiency, low enzyme deficiency, and muscle enzyme deficiency. So we began to give him oral doses of carnitine along with his Tagamet, Reglan, Senakot, vitamins, and Duphalac as well as continual antibiotics which he seemed to stay on. After 2 weeks, he did begin to have more strength and more alert for longer periods of time. We thought we had found the answers. Wrong. Although, they had tried to put off another surgery, the ear infections prompted another surgery, to have myringotomy tubes placed in both ears, exploratory scopes were done on his vocal cords, voice box, and etc. too. He was having lots of staring and jerking episodes at about 20 months and EEg showed possible seizure activity but not enough to be conclusive. Reflux began again and we changed over to Zantac. Anemia was worse so we began Ferinsol iron drops. We were referred to the voice center to inquire with more help on speech.

Home therapies were going strong, we visited at least 1 doctor weekly and pt 2x wk, speech 3x wk, di weekly, ot 2 x wk. They put AFO's on his legs at 21 months. We wore them about 6-7 weeks and had to stop, he had huge blisters and bruises and screamed each time you touched his legs.

Then 1 WEEK BEFORE he turned 2, He STOOD!!!!!! on his 2nd birthday he actually took steps ALONE!!!I was so thrilled! Not only had the doctors said he would never talk, they didn't believe he'd have the strength to walk. He did. He ws so proud.

At his 2 year check, we found dental problems and we also went to an opthomologist. He has a stigmatism but eyes are good , except for sensitive. He can not be outside without sunglasses on and even bright lights hurt him. 1998 brought more sinus infections, bronchitis, pneumonia, lots of leg cramps, ankle breakdown from walking and fallen arches, dental problems from reflux and amounts of acid in his system. Gastroenterologist is really trying not to have to repeat Nissen, but not looking good. We have persistent severe encopresis(constipation) and now fond a hiatel hernia.(Tyler has always had a very small anal hole where we have had to do anal finger dialations weekly since he was newborn.). Still becoming lethargic at times, new genetic blood work showed carnitine levels high so they stopped the carnitine right before his 3rd birthday, no differences good or bad, so carnitine def. ruled out, back to "unknown syndrome"..... His 3rd birthday brought us to surgical endoscopies and biopsies and more testing. In june of 1999, we had dental surgery for decay, 8 front teeth were so acid eaten they had to be removed and the other 12 were capped. Infection had spread to his blood system and lead to another close call. Between his hypotonia and muscle weakness, he often would fall during a normal walk, in july we were back to hospital with 2 fractures in his wrist from a simple fall, then he went in to double bronchitis. As soon as he was strong enough, july 29, surgery again,: pyloroplasty, repeat fundoplication, hiatel hernia repair and scar removal. we went home 1 week later and back to the hospital the next day. They finally found (after 4 weeks of pain and returns to ER) that the Nissen was to tight to on September 2, they had to go back in surgically and dilate his esophagus. In october, we had another speech evaluation and voice center exam included a nasoendoscopy and VP port exam. findings: short uvula with velar elevation, no palatal closure at all, little sphincter movement, pharyngeal flap short with epiglottis against wall, severe articulation issues. Referred to plastic surgeon. 2000 was started out with surgery on january 3. The plan was a pharyngeal flap correction so that he could get air flow and extend the short palate,

Just as he was about to cut, Thank God, he noticed a ridge, Tyler-Ray has a medially displaced Right Carotid Artery- Big medical alert. We don't even like to ponder the thought of a less alert surgeon. He was able to raise the flap some without touching the abnormally displaced carotid. It was noted that he does Not feel that any procedures will allow him any more than minimal speech. He also noted that Tyler-Ray has some type of neuromuscular disorder not anatomic.
After recovery and back to usual, We began speech therapy at the Bill Wilkerson Speech Clinic, division of Vanderbilt hospital. We also change his occupational therapist to vandy and physical. On his 4th birthday, he was actually able to have enough airflow to actually blow his candles out (with minimal help). We are having lots of behavioral problems due to frustrations about not being able to communicate and be understood. Since his last surgery, he has really began to "talk" LOTS! It is not intelligible, but I have never seen a child that wants to talk more. It is really heartbreaking. He uses signs a lot, but due to his fine motor difficulties he is not able to use proper signing.

In June of 2000, Dr. Marshall Summars-genetics at Vanderbilt, finally gave us a label after 4 1/2 years of testing and research- Opitz Syndrome.

I enrolled him the public preschool program and attempted that unsuccessfully. He really withdraws from other kids and the teacher had great difficulty. God always gives extra when he takes something, and for tyler- he isn't able to talk nor use his hands just right, but God make up for this in intelligence. He scores 91% of a 6 year old in cognitive testing. So he realizes that he is different. His psychologist states that she believes part of his frustration tantrums is that he wants so badly to express himself and to be like other kids and when someone notices that he becomes defensive and sets off the tantrum. So, in school, he tries to tell others things and can't. His teacher told me that she prefer me to attend with him and help interrupt for her. It became such stress for tyler, me , and the class that I just stopped taking him. The only reason I started was to allow him to become less dependent on me (I still had to stay), and to play with other children, but he sat alone.

We went in the spring of 2000, and started in the fall but after 6 weeks, I decided that therapy at Vanderbilt was enough. We also have a sunday school class, night class, and wednesday night class, so we are having peer exposure 3 times a week. He goes to occupational therapy 1 time week, speech 2 times a week, physical 1 time month and language therapy 1 time a week. He has received cascade ankle DAFO's which have helped with his ankle breakdown. We still have lots of leg cramps and tight muscles, but he is now able to run, play and ride a bike.!!!! he still tires easily but he is involved. He even plays on a t-ball team and a soccer team and is now participating!! He can't keep up with the others, but it doesn't seem to bother him as long as he gets to play and sports is something that he doesn't have to have the correct speech for!!!

Occupational Therapy has been Great at Vandy. He now is less tactile, he can use scissors, and holds a pencil with a grasp of a 3 year old. He is now undressing and helping to dress. He hugs now without begging, but kisses are still "yuk"!!ha. Bill Wilkerson speech, Wonderful... We can say mama, neigna(for sister), ahe(dad), moo,no, yea yea, bball. He talks in sentences and gestures to help us understand. He has began to play with other kids one on one. He even has a friend spend the night and plays well. Dillan is 5 and he understands that Tyler-Ray has a special talk and when he can't understand, he asks quietly without hurting Tyler's feelings.

We have requests in for the insurance company approval to purchase a dynamite machine. He has been using one at language therapy since november and he loves it. He really seems a different child now that he can tell people things and they actually understand. I received a special christmas gift, usually at family gatherings he will sit alone or play with one person, this year, he actually got in the floor with the others!!!!! It was so wonderful to see my son sit with others and smile.

Tyler-Ray is such a Blessing and a Miracle. Doctors said he'd never survive, and thank God, we have shared 4 years and 9 months so far and even with all the close calls, the constant rushing and worrying, I wouldn't change a thing- unless I could be the one with all the problems and pain and frustrations, I take his place any day- but God has a purpose. I have learned from Tyler-Ray- I have learned the importance of Life, live one day at a time and don't take even the simplest tasks for granted. My strength comes from God and from Tyler-Ray's strength and determination. He has never give up and neither will I.

 

Dawn just turned 16 and is very special too. She loves her "special" brother that required constant attention and us being gone for long periods of time.

Tyler-Ray's Milestones

Big Event	Age	Weight Chart
Sleeps all night	5 1/2 weeks	birth 7 lb 6 oz
Rolling from side	3 months	2 mo 9 lb
scooting on bottom	11 months	4 mo 13 lb
crawls	19 months	6 mo 15 lb
says "ame"(moma)	11 months	8 mo 16 lb
holds cup	10 1/2 months	10 mo 16 1/2 lb
drinks from straw	12 months	1 yr. 17 lb
sit alone	8 months	18 mo 21 lb
1st hair cut	22 months	2 yr 25 lb
1st step	24 months	3 yr 31 lb
1st tooth	14 months	4 yr 35 lb
Walking	25 months
Running	30 months
Potty trained (wets, except nights)	3 1/2 years
Poops in potty	4 1/2 years