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Evan M. – actualizat noiembrie 2020 Evan is now 13 de ani și a venit atât de mult de la ultima sa actualizare la 8 years old. În timp ce mâncarea lui nu este bună și refuză să mănânce pe cale orală, el este alimentat în principal cu ajutorul unui tub de alimentare cu buton Mic. Are un amestec de fibre multiple Tentrini Energy, SOS 25, MMA/PA Express 15 și Calogen pentru calorii. Îi dăm bolusuri în timpul zilei și pompăm 3 hours at night.
Thankfully, acesta este singurul lucru cu care s-a dus. Este antrenat la toaletă (zi & noapte) de câțiva ani și se descurcă grozav. Vorbirea / comunicarea sa a venit la salturi & în timp ce încă nu putem purta o conversație cu el, el se poate exprima destul de clar și înțelege comenzile și cererile. Îi place să mă ajute acasă făcând mici slujbe prin casă.
Evan iubește toată tehnologia, îi place să se uite la televizor (favoritele sale în acest moment sunt Prieteni, Doi bărbați și jumătate, spectacole de gătit și desene animate) filme, muzică și dans. Iubește animalele și este fascinat de pinguini. Iubește cărțile și cititul și iubește să se joace cu câinele nostru Elmo. Este un băiat zâmbitor care luminează orice cameră și are un râs atât de infecțios. Are pofta de viață ca nimeni altul și iubește oamenii și oamenii îl iubesc. Cu siguranță este un animator.
În timp ce el a mers pe parcurs, avem încă un drum lung de parcurs. În principal cu mâncarea și are, de asemenea, în prezent unele probleme de mobilitate care necesită suport AFO ridicat la genunchi atunci când merge. Este considerat ‘sever’ cu PA. Severitatea a scăzut oarecum după transplant, dar oricât de bine ar fi el acum, viitorul este întotdeauna incert cu PA, mai ales acum cu Covid. În prezent, el este educat la domiciliu și se descurcă grozav în ciuda temerilor mele. Sănătatea lui va rămâne întotdeauna prioritatea noastră, se poate lucra la dezvoltarea sa.
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, totuși, 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.