Who We Are

 


 

Hello.  We are the Masters Family. We are composed of Gary, Gina, and Logan. 

 

Logan, our son, celebrated his fourth birthday on March 17, 2007.  He is a very special and unique little man.

 

My wife's pregnancy was awful from the start. We were in the process of building

a home and prior to her becoming pregnant with Logan, she had had several miscarriages.

 

During her pregnancy, it was undoubtedly stressful for her and for me.  Logan did not move much which brought on many questions in itself.  Gina had a one vessel umbilical cord, which is common in Down's Syndrome children.  She was taking progesterone, both the shot and vaginally.  As well as being a high-risk pregnancy, she was in labor for 36 hours, due to the hospital sending us home. They told us she was not in labor because she was only dilated 2 centimeters.  Later, we found out that Logan's head was stuck in the birth canal and Gina's pelvis was not going to expand any further.  They finally performed a c-section. 

 

I thought things were unusual when they removed Logan from the womb. He never cried, never made a sound.  I became very nervous and scared. I knew this was not right.  Although I had some fears, my son appeared healthy and nothing else really mattered. 

 

Logan was an excellent baby. He never cried unless he was hungry. He would just lay on his back and play. If you tried to put him on his belly, he let you know that he did not like that.

 

As Logan got older, from 6-18 months, we began to notice -- or I should say, I did not notice -- that he was not doing the "typical" things that you would "normally" see for a child between those ages.  Logan never babbled or tried to talk.  He would only grunt, but at that age, we thought this was his way of trying to talk.  We later realized that was not the case.  Logan did not crawl until a week before his first birthday, and even then, he went backwards - not forwards.  My wife and I chuckle about it now, but until he crawled, his method of getting from place to place was what we called "turbo rolling" because he could get some speed up!  A week after he crawled, he then began to walk. 

 


 

Logan would bang his head on various things - from the floor to table legs.  I went as far as putting foam pipe insulation around the top of his playpen.  When that failed, due to him biting it, I replaced it with blankets.  I also had to pad his entire crib with layers of blankets so that he would not injure himself. 

 

All of the signs and things that seemed to be abnormal in his development we brought to the attention of many individuals.  We were comforted by the advice of all, that "he was a boy. They develop slower than girls,"  "he is just not ready," "don't punish him; he is only a baby once,"he's healthy, don't worry about anything."  Although our suspicions were suppressed by words of comfort, we as parents, were not satisfied. 

 

First, we went to see an ear, nose, and throat doctor.  Logan had had chronic ear infections (eight) by the time he was 22-months old.  The ENT did a hearing test and checked his ears and told us that all seemed to be fine.  Then, the doctor asked us, "Have you considered he may be autistic?"  We replied, "no, he does not display those characteristics."  Then this ENT made the most offensive comment to us. He said, "This is the problem with young parents today.  They can't see the forest through the trees."  He then continued, "There are rules in child raising and he (Logan) should be able to say 18 words by 18 months of age and be able to talk to a stranger and the stranger should be able to understand him."  I was furious, but open-minded.  My wife was in tears but did not accept that as an answer since she had worked with autistic children before.  My wife said to me that, yes, he has some characteristics but not the clinical features.  Finally, when Logan went in for his two-year wellness checkup at 24-months, we told his pediatrician about our experience with the ENT.  Our son's pediatrician gave us a number for Early Intervention.

 

Shortly after our visit with the local ENT, we scheduled an appointment with an ENT at our local children's hospital.  The ENT there suggested that Logan have tubes placed in to have his phrenulum released (phrenulum is the small piece of skin under the tongue).  Logan this this "released" or cut once before he was 10 days old due to being tongue-tied. It had grown back. So, we scheduled this surgery for July 5.

 

Early Intervention specialists came out to our home and evaluated Logan on his cognitive, motor, behavioral, physical, and speech levels.  We were devastated by the results.  He was behind developmentally in everything for his age. They pointed out to us things such as: he was unable to stack blocks, unable to place pegs in a hole, and was not able to speak any words at all. He was unable to throw or roll an object to a person. He was unable to climb on the couch or stand up without the aid of someone or some thing. He was unable to go up or down a step or two. 

 

After the initial evaluation, Logan began therapy in June 2005.  A speech therapist and an occupational therapist would each come to our home once a week for one hour a day.  The things we were most concerned about at that time were, 1) his inability to speak, 2) his low muscle tone, and 3) his not being able to use a fork and spoon.  The first thing was to develop a means of communication.  Our therapist at the time wanted us to use flash cards but we decided that when Logan would have an outburst, it would be disastrous to flip through flash cards trying to find what he needed.  My wife then decided that since she knew sign language, she would teach him two words a week.  He excelled in this area and by the time he was three, he was able to sign approximately 150 words in ASL sign language.  In addition, his frustration level had decreased and, in turn, he would band his head less.  Although this was progress, other things were starting to arise such as more hand biting and pulling his hair.

 

Shortly after Logan started Early Intervention, we made an appointment with a Pediatric Neurodevelopmentalist at a local children's hospital.  When we met this physician, in September 2005, for the first time we were astonished at the amount of time he spent with Logan. He spent 5 hours with Logan, with us, talking to us about Logan, walking with Logan, and playing with and testing him.  It was a good feeling to know that he truly cared about our son.  He told us that he would be the first to write him off as autistic - and that he did display some autistic traits - but that there was something else going on.  That day, Logan was given an initial diagnosis of Global Development Disorder with Apraxia. We left the physician's office very relaxed, knowing that there may be something more underlying with Logan.  The NeuroDevelomentalist recommended that we take Logan for blood work and we did that and after he received the results, he would contact us.  As you may expect, we had routine and frequent doctor's appointments for the next few months as well as various therapies.

 

With all that was going on, trying to find the root of our son's lack of development, my wife and I stayed very focused. We knew that feeling sorry for ourselves and Logan would not do him justice, so aside from Early Intervention, we decided to see what other programs were available for children with delayed development.  We found that the local colleges and universities in our area had various programs for nominal fees. We first signed Logan up for speech therapy at a local rehab institute where he received an additional hour of speech therapy each week.  At first we were a little apprehensive about getting him involved in so much therapy but he loves to learn and as long as that stays true, we will feed that fire.  In addition, we enrolled Logan in a day care for two hours per day so that he would develop social and interactive skills.

 

As time went by, January 2006 came and it was time for Logan to get blood work done which has always been very difficult, but we managed.  He has "rolling" veins and is always tough.  So, we waited for a response from the doctor regarding the blood test results. In the meantime, we had to start to prepare Logan to transfer to the 3-5 year old program.  You see, there is a 0-3 program run directly by the county we live in and a 3-5 year old program run by a school district and overseen by the county.  Logan would be 3 in a few months and preparations needed to be made.  He would receive his therapies based on the school year.  We had also arranged for Logan's first IEP (Individualized Education Plan) for March 10, 2006.  This would establish what therapies he would receive for the semester. 

 

We then received a phone call on March 8, 2006, from the NeuroDevelopmentalist's office. It was about 7pm and the voice on the other line told us "your doctor would like you to come in in a few weeks for Logan's appointment" which was coming up at the end of March. We asked why but the secretary did not know the reason.  We prodded her for as much information as we could because we were very scared now.  It is not often that your appointment is moved up, especially when there is a three-month waiting list for children under three and an 18-month waiting list for those over 3. She finally gave us the number for Logan's NeuroDevelopmentalist's office.  We called immediately and we were surprised to have reached him so late.  He was very reluctant to speak to us on the phone about the matter, but my wife was very persistent, explaining that it is unfair to leave us in limbo about our son until his next appointment.  Again, he remained very reluctant but Gina finally convinced him to tell us.  He told us that Logan has Smith-Magenis Syndrome, a deletion or mutation of the 17th chromosome p11.2.  He explained briefly to my wife what it was and gave us one of the Internet address of the only reputable website about this disorder.

 

We were in shock over everything.  I did not know how to feel or to act. I wanted to break down, but we also did not want to jump to any conclusions.  We spent the rest of the evening on the computer doing research about Smith-Magenis Syndrome. We learned a lot that night, about who we are and who we were about to become, as well as just how much we love our little boy we call Logan.

 

SMS (Smith-Magenis Syndrome) is characterized by a recognizable pattern of physical, behavioral, and developmental features.  Common features include: characteristic, yet subtle, facial appearance; infant feeding problems; low muscle tone; developmental delay; variable levels of mental retardation; early speech/language delay; middle ear problems; skeletal anomalies; and decreased sensitivity to pain.  The syndrome also includes a distinct pattern of neurobehavioral features characterized by chronic sleep disturbances, arm hugging/hand squeezing, hyperactivity and attention problems, prolonged tantrums, sudden mood changes and/or explosive outbursts, and self-injurious behaviors. A more complete list of physical, developmental, and behavioral characteristics, please refer to www.prisms.org

 

When we read the characteristics of SMS, we knew "this is Logan".  He has all of the classic characters; the self-injurious behaviors such as head banging, hair pulling, hand biting, and gouging at his ears till they bled.  He also has the poor muscle tone, speech delay, and poor fine and gross motor skills.  Logan has a speech delay as well as delayed toiletry skills. He also has explosive outbursts at times, usually when he has done something wrong, but was unable to control the outcome of that event. 

 

Logan also has the decreased sensitivity to pain and temperature.  This is extremely stressful on our family as you may imagine.  Imagine yourself - or a loved one - being unable to response to temperature or pain. Imagine melting the skin off your hands but not realizing it until the damage had been done. Now apply those situations to the one you love the most. Think about the stress of daily life and the panic that goes with it just walking out your front door. 

 

One of the greatest battles we fight daily is Logan's sleep disturbances.  Logan's body secretes melatonin during the day, usually mid-morning, and not at night such as with most people.  This makes for some late nights and always very early mornings (4 am - 6 am).  Logan used to have many sleep disturbances and at times would wake up every 45 minutes to an hour throughout the night.  We now supplement him with a melatonin supplement about a half hour before he goes to bed, usually between 8 and 9 pm.  On the other hand, he may fall asleep or nap for up to three hours at a time.

 

When we met with Logan's NeuroDevleopmentalist, he explained to us that Logan would need to undergo some medical tests to rule out any potential threats.  Some of the tests he underwent were a cardiac test, x-rays of his kidneys, x-rays of his forearms, hearing tests, and eye exams.  Many of these tests will need to be conducted on a routine basis so as to be proactive if these problems were to arise in the future.  He is also required to have routine blood work to monitor his cholesterol, thyroid, and other blood chemistry.  All came back negative, however, they will need to be monitored regularly.

 

After Logan turned three, his therapies stopped with the Early Intervention 0-3 program and the Hazleton program started.  Logan qualified for and received 39.5 hours of therapy per week.  He received speech, physical, occupational, and special instruction therapy throughout the week as well as having a TSS (Therapeutic Staff Support) worker with him.  He also attended and still does attend speech therapy at College Misericordia for one hour per week and one hour of speech therapy per week at the John Heinz rehab center.

 

Logan has excelled in his therapy.  He loves to learn. As he has grown as an individual, his self-injurious behaviors have decreased somewhat.  He has started to combine his sign language skills with a few words he has been able to say. The therapy has enabled him immensely. We focus on his poor muscle tone, both orally and physically.  Orally, we have focused on strengthening the muscles in his mouth and tongue.  He still drools quite a bit for a three year old.  It is amazing to watch the therapists work with Logan.  He is so in-tune with what is going on and usually there is little to no outbursts or non-compliance.

 

In September of 2006, Logan started school at the ripe age of 3 1/2.  He would go to school from 8:45 am to 11:30 am.  He would receive all of the same therapies but in a classroom setting.  He does so well; he has good and bad days but is usually very compliant.  They mimic a school setting, have field trips, and do various craft projects and activities.  After coming home from school, Logan eats lunch and usually is then ready for a nap.  He then attend daycare with his mom and his TSS where he received more personal instruction.

 

We have been trying to work more on a being in public places with Logan as well. He has never really functioned well in public areas. Usually, public encounters end up in some type of explosive outburst that involves Logan either hurting himself or throwing something. In the summer of 2006,  we went out to dinner to a Chinese restaurant and took Logan with us.  Our dinner was abruptly ended after Logan grabbed a plate out of the servers hand and threw it about 5 feet.  This type of behavior is common of Logan which is why the three of us have only been out to dinner 4 or 5 times.  My wife and I only have been out to dinner by ourselves about the same number of times. We do not feel comfortable without our son with us and we feel it is very unfair to him.  There have been very few times in Logan's life that he has not been with us. We usually do not leave him with anyone other than his grandparents or ourselves.  We do not do this to keep him from society but we are cautious of what other do not know about Logan and how they may react to his behaviors as well.

 

Logan used to sleep in a crib, but as he got older and stronger and bigger, we were forced to place his mattress on the floor and put a crib tent over his crib.  We had replaced his crib tent a few times due to Logan ripping it.  We also need to secure his crib to the wall because he was able to shake it. We soon realized that Logan would require a different type of sleep system. We knew he would not stay in a toddler bed, especially when he awoke during the night.  My wife and I knew if he were able to mill around his room, he would not try to go back to bed.  We also worried that he may injure himself.  Ever since Logan was born, we have had a baby monitor in his bedroom and ever since he was one years old, we have had a surveillance camera in his room to monitor him. We also started to look around for bed alternatives and found that there was not much available.  One company was shut down by the government due to too many deaths caused by their beds.  Another company made primarily geriatric beds, which left only one other company that we were aware of.  We contacted the manufacturer and inquired about their beds. They sent us the information but reminded us that we would need to go through a durable medical equipment supply company to acquire the bed.  This bed is fully enclosed and is a padded canopy bed.  This would ensure Logan's safety as well as a longer-term solution for sleep growth.  We informed Logan's NeuroDevelopmentalist about the bed and asked him for his input on it, and he gladly took on the task of seeing if the bed would be right for Logan and his condition.  It took some time to get the bed but on December 28, 2006 the bed and delivered and set-up for use. It has been one of the best things for Logan.  He actually enjoys being in it. He plays and has fun.  As I stated earlier, when it comes to sleep, Logan needs a melatonin supplement, which has always been a treat.

 

With regard to the melatonin, we first started out by buying the tablet form of the supplement and crushing it between two spoons and then adding the powder form to jelly or putting it on something and attempting to get it into his mouth. As you would imagine, this all happened with kicking and screaming and did not go well. We next moved to taking the crushed form and adding it to his milk or juice.  This was a bad idea. Melatonin does not dissolve in anything, hot or cold, thick or thin, it only clumps.  We then moved to the liquid melatonin products which are wonderful except for trying to find a supplier to obtain it from.  It also only comes in 2 or 4 ounce bottles which only lasts about three nights .  We have now hopefully reached the end of our melatonin journey. We found a "natural" supplement that has worked spectacular.  Ever since we have started giving Logan this product, which was in January 2007, he has actually slept through the night without waking up - not every night, but about 85% of the time.  I think that it is important to state that when I walk about a full night's sleep, I am referring to 6 to 8 hours, which is the most Logan has ever slept.

 

In the fall of 2006, Logan underwent his second surgery in which he had his tonsils and adenoids removed and a second set of tubes put in his ears.  One thing that we have learned is that anesthesia and Logan do not agree. He usually awakes from the anesthesia very violently. He has just undergone his third and hopefully his last surgery in February 2007. This surgery was on his teeth. Logan has such poor muscle tone in his mouth that he stores a lot of excess food in his mouth which has in-turn, led to premature decay of his teeth.  Luckily, however, no teeth were extracted and all were repaired.

 

As of March 10, 2007 I would like to say that this is a father's rendition of his son's life thus far.  Logan will be 4 years old on March 17.  The most important part of this biography is that my wife and I love our son very much. We are so proud of him and everything he has accomplished and overcome in his life thus far.  Although he has gone through a great deal for a child his age, we realized there is always someone out there who is worse off.  I have given you a short life story of my son, Logan.  What you have read has been insignificant in comparison to the great joy our son has brought to our lives.  For all the trials and tribulations our family deals with on a daily basis, there is so much joy. Logan is a happy young man and my wife and I try to have Logan experience everything that he can. Logan loves to help around the house.  He helps clean the windows and he just loves to vacuum.  He likes to wash the dishes and help mom wash the floors.  He really enjoys mixing eggs so we can scramble then. When I am home, he likes to wrestle with me and sit on my shoulders and walk around the house. As far as outside activities, he loves it whether it's winter or summer. He helps whenever he can. Recently we started our seeds for our garden in the basement. We put dirt in the egg crates and planted our seeds together.  He always helps me in the garden.  Whether he is pulling the vegetables prematurely or eating them right from the garden, he is still there by my side.  He likes to wash the sidewalks with the hose as well as squirt his dog with the hose.  Logan loves the water  -- from the pool to the ocean, from the creek to the bathtub!  He loves to ride on our ATV.  We put his helmet on and drive around the yard.  We even plow snow together.  We go for walks in the woods and go to the beach.  We play on his swing set and do chores around the house.  We do everything as a family. We eat together and we play together.  We even work on the computer together, just as he is watching me type this story. 

 

Logan is the very best thing that has happened to Gina and I. Every day, he brings us closer together.  He is our diamond in the rough.