I have been following a lady on Facebook named Lacey who has a son named Christian that was born with a cleft lip and palate. He was also born with a clubbed foot and also what is called clefted eyes (the eyes did not form while he was in the fetus). I came across her blog she has (also through blogger) and seen a post she made breaking down her son's conditions and what they have done so far. She was talking about his speech therapy and had made the comment that unlike other cleft children he is having to do speech to learn how to talk all over again. Said children with just the cleft lip and palate are just doing speech to learn to not talk through their nose. This was incorrect! I just noticed even people who experience this with their children still does not understand per case. They just know and understand what they have been told by others dealing with their own child.
So since I haven't really given an update on my angel here lately since his kidney surgery really...
My youngest son as everyone knows was born in July with a cleft lip and palate. His lip was repaired when he was 9 months old and his palate was done when he was 2 years of age. His lip was a single cleft and they said the palate was starting to look like it was almost a double. These things show more as the child grows. Some cases are very severe and my son's case thankfully was not one of those cases. He was born with most of his top lip (he was blessed with my big lips.lol) so there was lots of tissue there to work with.
Now my son is 5 years old. He has had a surgery on his kidney since the palate surgery was done. That was done February 2011 and we went in with the thought he would be coming in with one less kidney. They came out told us the muscle hadn't formed around the ureter going from his left kidney to his bladder. The ureter ended up just folding over on itself kinking the line like you do a water hose. He had a tiny flow from the kidney to the bladder through this tube, but not enough. Surgery was done, repaired the area in the ureter, stint put in to help it heal... All that jazz. Went back in and removed the stint and now here we are.
He also has had trouble with weight gain and maintain over his few years of living. He was 5% range as a baby and due to someone being hateful my children were taken from me by CPS using this fact. Someone said I was starving my children and CPS tried saying at first I was starving him to solicit him online to get money from people. Yet they could not find proof that I was doing that so they tried to say I was starving him, because he was my husband's child. Yes they tried to say I starved him and my oldest son (my middle son was chubby back then) trying to make a case that I cheated on my husband and that my middle son was not his. So I supposedly was starving my other two children, but not my middle son due to him being my lovers child. That fell out for them, because they kept thinking my oldest son was 8 years old when he was only 6 years old. He is really tall for his age and is healthy as a horse. All of my children then, before then and now are healthy as horses. So they tried to attack my mentality saying I am not all there and I don't grasp and understand what is going on. This was found out real fast in court when our lawyers were doing more to harm us than help us that I do in fact know what I am talking about and not one to go up against in a battle of wits.
Stacks of papers stating facts on every single medical condition my son at that time had been diagnosed with was presented to our lawyers. Every time they came up to me excited to say stuff like they have my son eating solid foods now I would simply tell them "funny he was eating them before he was even taken from me... CPS worker stood right there and watched him eat Doritos while she was talking to me. They even sat right there and watched us give him a Subway sandwich in the hospital for his dinner, but later when they got him to the foster home split it between the older two and fed them telling the foster mom thats all we were feeding our older two and all I would give my baby was juice." When foster parents that had them started to meet us and seeing hey these are people we know they started to open their eyes up to what CPS really was doing to families.
Now lets fast forward back to this whole kidney ordeal. His kidney was repaired and he has been on boost kid essentials. Before that he was on pediasure. not even a year after his kidney was repaired he picked up weight. He is now at a healthy weight and is really tall which surprise... Kidneys can hamper their growth if there is something wrong in there. We have now realized his Pediatrician he did have had no clue and that's why they were all for putting a feeding tube in him instead of trying to find the problem. Same goes for the doctor he had second. We have switched pediatrics 3 times now since his birth and are on doctor number 4! Which is the doctor who ordered all of the test when he was in the hospital for his kidney infection. We also found out thanks to her that he has a functional heart murmur.
So now we go see his ENT twice a year, Urology twice a year (this next year should be his last year to see them), Pediatric Nephrology once a year (he did see them twice a year, but this last visit they said once a year and did not see need for blood work! yay!!) and we will be finding out if he is going to see a doctor for growth issues or not. Just to see if he may need growth hormones or not since he had such a hard time growing when he was younger and still just now around 20 - 30% range in growth. We are back to doing speech twice a week through the public school system. We take summer vacations off, because he does so well through the year. Plus by the time he gets use to the person he is working with summer school speech would be over with and he would have not benefited.
So that is my angel's medical stuff (and our fight with CPS) in a nutshell. This is also a huge reason why I decided to home school. I wanted to home school beforehand when my oldest was just starting Kindergarten age, but only reason then was just because I didn't like the schools where we use to live. My middle son didn't want to go to public school which after the ordeal with CPS and the fact he is scared someone is going to leave and never come back because of that we just decided to home school him. My oldest attended public school and brought home every cold that came through (stomach flu included) which caused my youngest to get sick with colds putting surgeries off at times. It is a lot easier to control illness and colds as much as possible if needed when everyone other than daddy is here in the house. We have become a bit of germ freaks around here at times.
Also helps ease my mind tons when we have doctor appointments out of town and don't have to try and rush to make it back in time to get my son from school. That got hairy a few times and thankfully there was a teacher at his school who helped us out a lot. So now instead we are one big family unit. We deal with our problems head on as a family and we stick together. Even if it is just for one member. He has to deal with this enough on his own (as far as being the one who has to go through it all), but he knows he is never alone. His brothers are by his side along with mommy and daddy.
Hope everyone has a blessed Wednesday!