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Evan M. – aktualisiert November 2020 Evan is now 13 Jahre alt und ist seit seinem letzten Update bei so viel aufgetaucht 8 years old. Während sein Essen nicht gut ist und er sich weigert, oral zu essen, Er wird überwiegend über eine Mic-Key-Taste gefüttert. Er hat eine Mischung aus Tentrini Energy Multi Fibre, SOS 25, MMA / PA Express 15 und Calogen für Kalorien. Wir geben ihm tagsüber Boli und pumpen vorbei 3 hours at night.
Thankfully, Dies ist das einzige, mit dem er Backwords gemacht hat. Er ist auf Toilette geschult (Tag & Nacht-) seit ein paar Jahren und geht es gut. Seine Rede / Kommunikation hat einen Sprung gemacht & Grenzen und obwohl wir immer noch kein Gespräch mit ihm führen können, kann er sich ganz klar ausdrücken und Befehle und Anfragen verstehen. Er liebt es, mir zu Hause zu helfen, kleine Arbeiten rund ums Haus zu erledigen.
Evan liebt alle Technologie, er sieht gerne fern (Seine Favoriten im Moment sind Freunde, Zweieinhalb Männer, Kochshows und Cartoons) Filme, Musik und Tanz. Er liebt Tiere und hat eine Faszination für Pinguine. Er liebt Bücher und Lesen und spielt gerne mit unserem Hund Elmo. Er ist ein Smiley-Junge, der jeden Raum beleuchtet und so ansteckend lacht. Er hat eine Lebensfreude wie kein anderer und liebt Menschen und Menschen lieben ihn. Er ist sicher ein Entertainer.
Während er auf dem Weg ist, haben wir noch einen langen Weg vor uns. Hauptsächlich beim Essen, außerdem hat er derzeit einige Mobilitätsprobleme und benötigt beim Gehen kniehohe AFO-Stützen. Er gilt als „schwerwiegend“.’ mit PA. Der Schweregrad hat sich nach der Transplantation etwas verringert, aber egal wie gut er jetzt ist, Die Zukunft ist bei PA immer ungewiss, besonders jetzt mit Covid. Er wird gerade zu Hause unterrichtet und es geht ihm trotz meiner Besorgnis gut. Seine Gesundheit wird immer unsere Priorität bleiben, An seiner Entwicklung kann gearbeitet werden.
Evan M. – updated March 2015
The transplant wasnt a ‘cure’ but is a huge help in managing Evan’s condition and giving the best chance at living a normal life. He can tolerate alot more protein which in turn helps his development and generally makes him look healthier. He is in his 2nd year in the local special needs school and he absolutely loves it. He runs out to the bus in the morning and always has a smile on his face wen he gets off the bus when he gets home! He loves the attention and being with others his own age. His speech and communication is coming along although we still can’t converse with him and his eating is steadily improving. Although foods still have to be pureed, he is open to trying new things and experimenting and playing with food whereas before he showed absolutely no interest in food and mealtimes.
Not everyone agrees with our decision to go for a Liver Transplant but even though the 1st year was tough we don’t regret our decision. Our thinking was that if something happened during or after the transplant at least we are doing everything possible and in our power to give our child the best chance possible to have a normal life. Life with PA is so unpredictable. Sarah (Evans mam)
———————————————————– Evan is 4 and he was diagnosed with Propionic Acidemia when he was four days old. normal pregnancy, normal delivery and evan arrived a healthy 7lbs 11ounces three days early. On day 3 he was getting very lethargic, he wasnt feeding and was breathing funny from his nose, like he had a cold. He was brought to the Special Care Unit by a nurse and we were told he would be back up soon so we presumed it was just to be checked out. An hour later, he was on a ventilator as doctors were afraid he would stop breathing. A number of tests were done and doctors in Cork narrowed it down to a Metabolic Disorder but they were not the experts in this field, The Metabolic Center of Ireland is in Dublin so Evan was transferred up when he was 3 days old where they diagnosed him the day after. Evan was in the hospital for 3 months until well enough to return home. Since then he has been admitted to the local hospital a handful of times, for flus, bugs and infections but thankfully since birth he has had no major decompensation. He has a good enough appetite and drinks his XMTVI Maxamaid orally during the day and eats about 6 of his restricted 8 exchanges of protein orally, jedoch, anything he does eat has to be liquidised with no lumps whatsoever. He also has a continued feed during the night through PEG Tube. We travel to his doctor in Dublin every 3 months for check ups, where they take blood and check his levels are normal, and we speak to dieticians etc. Evan is a wonderful, happy, sociable, and boisterous 4 year old , he struggles with speech and communication which can get him frustrated and he has regular speech therapy, physio and occupational therapy. Evan has been on a waiting list for an Auxiliary Liver Transplant for 7 months now. |
Evan is now 8 years old. He had a partial liver transplant in March 2012. Whilst the 1st years was very tough, unfortunately he was diagnosed 6 months after transplant with Lymphproliferative Disease. A type of Lymphoma brought on by the immunosuppressants needed to stop his body from rejecting his new liver. He needed a few months of chemotherapy but thankfully got the all clear from this a few months later. Since this however, Evan has come along so so much.
He is still tube fed most of the time via a mic-key button in his stomach. His feed consists of Energivits, Nutrini and MMA/PA Gel and all medications we give to him via this tube. So even though he still picks up every bug and infection going and does have long bouts out of school and the odd admission to our local hospital the future is looking bright for Evan. There is no doubt life is tough living with PA, we do our best by our children.