I am a private person for the most part, but am willing to share if someone asks about me or my experiences.
After spending a weeking in a hospital PICU with my 7 year old and two frustrating days at home arranging for her care I thought that I should at least share some of my experience to help others. I have liked to think that I could be a regular stay at home mom and handle the care of all of my children myself. It has come to a point where that is not the case and I need someone here in my home to help me. This has been a more difficult change than having her feeding tube placed because I have to fight for it.
My seven year old has Propionic Acidemia (www.pafoundation.com), secondary immune deficiency (www.primaryimmune.org), Long QT Syndrome (www.sads.org), asthma, allergies, GERD, esophagitis, and hypothyroidism. She is primarily tube fed with her Zevex Entralite that we love! She is also a lover of almost everything: people, amusement park rides, Chuck E Cheese, everything electronic, her brothers, her classmates, her imperfect parents, fishing, playgrounds, etc. She seems to be able to balance in her mind the trauma of needle sticks and IVs with the video games she will play at the hospital and TV she can watch on the way to appointments.
We have two healthy boys. A 2 year old with some pending allergy tests, who had his tongue clipped at 4 weeks, and a 5 month old preemie who is delighted by his siblings as much as they delight in him.
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I know it is hard work being a mother of a special needs child. I hang onto the verse "I CAN do all things through Christ who strengthens me." Each time I think I am at the end of my rope it lengthens. :) I will be praying for your family.
ReplyDeleteI would love to know more about your child's special needs and how old they are etc. I have never heard about propionic acidemia.
PA is quite rare. It is anywhere between 1:50,000-1:250,000, with something uncommon and not regularly diagnosed it is hard to get a firm number on it. I 'think' there are 10 kids in IL with it. By 'kids' I mean anyone with it as most do not make it into adulthood.
ReplyDeleteShe can't break down some of the amino acids in protein, some fats, and cholesterol. The bacteria in the GI tract make a lot of the acid. It is a recessive genetic disorder, so her birth family had no idea they were carriers for it. It can cause brain damage, low muscle tone*, cardiomyopathy, Long QT*, pancreatitis, seizures, bone marrow suppression*, eye damage, hearing loss, etc. (* are ones T has).
T has a bunch of other unrelated health issues like allergies. My boys are 2 and 7 months and do not have any health issues. All are adopted from different families.
Everyone loves life in our family and loves to be active.
The Lord truly prepared us for T, from nutrition classes in college to experiencing infertility, so that we could adopt her from a state which does ENBS.