At 21 & 22 years old Chrissy and Steve had been dating for 5 years. They were both full-time students while working part-time. This is when they discovered that Chrissy was pregnant. They both quit school in order to provide and care for their new family. For the most part the pregnancy was uneventful. Everyone was thrilled to learn that the baby was going to be a boy. The name Mason was chosen. Throughout the pregnancy Chrissy remained healthy and made the health and care of Mason a priority. It had been noted that the baby did not kick very much invetro but this being Chrissy’s first pregnancy she did not think it was abnormal. They have since come to learn that this is a sign of Polymicrogyria which occurs in approximately the fifth month of pregnancy. Mason took his time coming into our world. Finally two weeks after the due date labor was induced and we were introduced to our greatest Christmas gift ever. Mason was born on December 22, 2004. Initially, he did not cry but after being examined they were told that he was fine, just a quiet baby. By the time Mason was 2 weeks old he started having “episodes” in which he would jackknife, stop breathing for a short while, and then start screaming. Steve and Mason’s mom-mom suspected these were seizures. There is a history of epilepsy in both families so it was something they would be concerned about. Chrissy called the doctor to report what was happening and their suspicions. The doctor said that Mason was too young to be having seizures and that in fact it sounded like Mason just had gas. The episodes continued and they were still concerned. At Mason’s one month check up Chrissy again questioned the doctor about them. She was again told that Mason was too young to be having seizures and that she should give him gas drops. The episodes continued to the point that he was having them at least once every half hour and he stopped eating by the time he was 2 months old. At Mason’s 2 month check up the doctor finally agreed that there must be a problem since Mason had lost weight. The doctor did not know what was wrong or how to handle it so she sent Chrissy, Steve and Mason to the emergency room at
Abington had Mason transported via ambulance to CHOP. Once at CHOP they ran many tests. Mason did not open his eyes for 3 days. He was on an NG feeding tube, an IV, and EEG monitor and a heart monitor. Chrissy and Steve were scared he was not going to make it. He was so tiny to be attached to all of those machines. After several days they were told that Mason had a genetic disorder called Bilateral Frontopratial Polymicrogyria. It was explained to them that this would mean that Mason would have developmental delays at best and that he may not ever be able to walk or talk. They decided immediately that as long as Mason lived they would accept and deal with whatever they need to. CHOP was wonderful. They referred Mason to a new doctor and put Chrissy in touch with early intervention. They taught the family how to change Mason’s NG feeding tube and set up a nurse to make home visits. Through mother’s instinct Chrissy was able to teach Mason how to suck again by putting sugar on a pacifier so Mason did not have to have a permanent feeding tube. Mason also began physical and occupational therapy. Eventually vision therapy was added to deal with Mason’s cortical vision impairment. Speech therapy was also added to deal with Mason’s feeding difficulties. Mason now enjoys eating pureed table food which is allowing him to thrive and grow. Although this thrills Chrissy and Steve it does come with its drawbacks. Mason has grown and now weighs almost 30 lbs. at 3 years old. Since Mason does not support his own weight, it is like carrying a 30 lb. sack of flour every time you climb the stairs. This is getting difficult on their backs. They also have to lift Mason in and out of the car and the bathtub since they have not yet been adapted for Mason’s needs. When looking for a home they kept in mind Mason’s limitations. They knew that they wanted to find a rancher style home which would give them one story living. The homes that they were finding within their budget all had outside steps. Knowing that the steps would be an issue they investigated their options prior to purchasing a home. They discovered a foundation that told them they would build a wheelchair ramp for them once they purchased a home. Feeling reassured that the ramp would be built they purchased a twin raised ranch home. Once in the home they contacted the foundation and were told that there was a waiting list. They understood that they may have to wait a while and asked to be put on the waiting list. This is when they were told that they would have to wait until Mason turns 18 years old to be put on the waiting list. Since waiting until Mason turns 18 will not work they decided that they would have one built on their own. They contacted a contractor referred to them by the township. The contractor told them that due to the layout of the home and closeness of the neighboring home, the ramp would have to extend to the back yard then turn to go to the front of the house. The cost of the ramp would be approximately $30,000. The contractor told them that he felt it would be more cost effective to have an elevator installed since no ramp is needed to enter the basement. They contacted an elevator company who gave them a quote of $20,000. The story will not be over once access to their home is resolved. They are still going to have to come up with funds to purchase a wheelchair accessible van. They will also need to adapt their bathroom in order to accommodate Mason’s limitations. Then they will need to consider the adaptive equipment to allow Mason to communicate. They have spoken to couple of other foundations who are willing to help out with some of the cost of either the ramp or the elevator, as long as they are able to raise the remainder of the money. They already had one fund raiser with a great turn out. They are planning to have a beef and beer in the future once they are able to find a location and date. Meanwhile, Mason has been making small but steady progress. It may not seem like a lot to others but we see improvements in Mason’s head control. He is able to turn his head back and forth to follow whoever is speaking to him. He even holds his head up on his own for 1 to 2 minutes at a time. We are looking forward to getting some adaptive equipment to allow Mason to learn to communicate with us using slight head movements. We greatly appreciate all of the help we are able to receive whether it is through monetary donations, information or your prayers.
HERE’S THE LASTEST UPDATE ON MASON.
Mason was hospitalized in August 2008 with what we initially thought was pneumonia. We were later told that it was asthma. After his discharge, Mason continued with his cough for months. He was continually being treated by his allergy doctor for asthma. He was so bad that the only time Mason was not coughing was when he was laying on his side. Because of this he was unable to participate in any of his therapy activities and very little of his school activities.
Mason’s condition began to digress due to the lack of therapy and/or activities. Finally, Mason’s wonderful pediatrician intervened. She ordered a milk scan and a swallow study for Mason. The results of the milk scan showed that Mason had severe reflux and that it took him longer than most people to digest his food prolonging the reflux. The swallow study showed that Mason was aspirating on all of the food and drink that he would intake as well as his own saliva. It was determined that Mason should be immediately hospitalized so that he could be put on a feeding tube.
Mason was hospitalized for 2-1/2 weeks in order to determine the proper type of feeding tube that he needed and then have the operation. It was determined that he would have a G-tube as well as a Nissen Fundopilation. The Nissen Fundopilation is a procedure in which the top of the stomach is wrapped in order to prevent reflux. Mason had the operation on November 21, 2008. He also had tubes put in his ears at the same time. The only side effect that Mason had to all of this was that he wound up with dumping syndrome which affects his blood sugar. The dumping syndrome was easily treated with medication.
Since Mason had his operation he has improved immensely. He has gained 4.5 pounds! He is now participating in all of his therapies as well as his school work. He has been healthy and back to his happy self.
Mason had been scheduled for surgery on his hips the day he had his G-tube surgery. The hip surgery had been put off until he was able to recuperate. His hip surgery his now scheduled for March 20, 2009. Hopefully he will have as good of an outcome with the hip surgery.
We want to thank everyone who gave us their support and prayers.
