During the first three years of his life Phil attended several hospitals in Rome to check or to treat the different disabilities.
Phil had 2 EEG's and one MRI scan but no anomalies resulted.We went on step by step. First of all we analysed all the main anomalies reported for PKS on scientific papers (heart, digestive system, eyesight, hearing, etc.). All the vital functions were ok.
FIRST STEP
The first very important step was "walking". He started crawling at 12 months and he started walking at the age of two. He just had a low muscle tone and we helped him with a method derived from the "Glenn Doman" one (but much lighter). It has very important to him because he improved much faster also in other areas.SECOND STEP
The second important step was "hearing". Phil went through 4 different hearing tests with 4 different results!
We have a lot of charts describing the decibel of attenuation (his hearing) at the different frequencies. It may be important but not very useful. After 4 tests we decided to move to another doctor and in a short time we improved the situation so much! He has some problem in the shape of his mouth (muscular hypotone, big tongue, etc) that had negative effect on his hearing but with simple surgery (Ventilation Tube) Phil's hearing improved enormously and consequently, he started to speak. He started a speech therapy at three and he still attends a speech therapist twice a week and things have been improved a lot. It was quite simple but it took 3 years to get the result!THIRD STEP
Phil has several "small" anomalies derived from PKS and we decided to fix one problem at the time. Cryptorchidism is typical in children with PKS and other genetic syndromes and it could take to cancer and infections. Since his testicles were not in the right position, we decided to fix it with a surgery on March 2003. Phil suffered from ear infections all along the 2003 using dozen different antibiotics. On November 2003 he had a new surgery inserting fixed Ventilation Tubes. It improved the situation although it doesn't fix the problem totally. Having the tubes inserted in his ear-drums means avoid swimming pools and paying an higher level of attention during daily life. Next medical issue will be reducing the gap between his jaws (lower jaw is bigger than the upper one). It will improve language and chewing but it will take time.FOURTH STEP
Our long-term target now is a greater "level of independence" that includes toilet training (still not perfect), the ability to dress/undress, socializing, read and write, etc.
We made mistakes, we trusted the wrong people, we wasted time. We keep on trying. We are aware that Phil needs more attentions than a "normal" boy but we treat him as a "normal" child as much as possible and we are sure Phil makes progress day by day. Phil has always attended a "normal" school from the time he was 6 months old. He was able to write his name, spell and count up to 5 at the age of 4. He went to kindergarten and did the majority of the activities with the other 3 to 5 year old children. When Phil was older than 3 years old we decided to have another baby (Phil is our first child). We were very apprehensive but now we are very happy for several reasons, especially for the "therapeutic" effect he is having on Phil. Daniele joined us on 26th October 2000, when Phil was 4.
