Pre-K Grad and IEP Plan

He did it! Noah is a Pre-K grad.

I remember his first day going in and I was so nervous it was ridiculous. I know most parents worry about their kiddo starting school, but when your child has special needs, it makes you worry even more. I was worried he would throw up all over the place, he did, I worried he would stand out and not have friends, he had lots of friends. :) I worried the other kids would think he was "gross" for eating with his tube, but you know what? His friends were amazing! His teacher, Mrs. Patterson, said they would tell her when it was time for his water/lunch, and go get paper towels ready and a cup of water for him. They cheered him on when he took bites and tastes. It was really great. He loves going to school and his friends. I am so happy we decided to put him in school, it was by far, one of our best choices and we could NOT have had a better teacher for him. She has been so kind and patient and understanding. She has spoiled us!

Going in, we knew he was behind, he has always been behind developmentally, so we thought it would help 'catch him up.' Before I get to things he needs to work on, areas he is behind in, let's start with what he is doing well with. He has came such a long way with writing his letters. He went in not knowing how to make letters, he knew his letters, just couldn't write them. Now he can write all his letters! He has a significant delay with fine/gross motor skills, so learning to write has been difficult. His letters aren't pretty and if he isn't in the mood to write them, well, you can hardly read them, but when he focuses, he can do them fairly well. His letters are squiggly, they aren't straight up and down lines, more like his hands shakes when he writes, so they curvy, he also doesn't press down hard enough.  He has a hard time with the right grasp on the pens, markers, crayons......etc. He likes the grasp it with his whole hand verses the correct pencil grasp. When  he started he only recognized 21 upper case and 15 lower case letters, but the end of the year, he knew every single upper and lower case letter. In October he didn't know any letter sounds, but by May he knows 19 letter sounds. He knows all his shapes/colors...They want him to be able to count to 20, but can only get to 14 until he starts throwin in random numbers...13, 14, 25, 12...so on, but he knows and can write 0-10. He also can finally use scissors, scissors are hard! We always used the spring action kind at home, but at school he has regular kid ones. So, he struggles with cutting things on lines and gets very frustrated that he can't do it right, but we can work on it. he doesn't have good strength in his hands, so it's a tough skill for him.

He did get screened for and IEP for Developmental Delay. His teacher met with me in March and asked my thoughts on an IEP. We were initially just going to go with a 504 plan for Kinder, but she was concerned with his motor skills, that even by March he was still pretty far behind his peers & any help we can get him now to help prepare him and get him help in Kinder, we will. So, they did his testing and he has "significant Dev. Delay (DD) in Adaptive and motor skills. Sig. DD with gross/fine motor, Sig DD self care and personal responsibility. Some we knew, self care...others we were surprised with, but nothing crazy. So, he did qualify with and IEP for DD and will have it all in place for Kinder. He will get OT once a wk for Sensory issues, and 20 mins a day, every day, he will have a Special Needs, teacher come in his classroom and work with him on fine motor and gross motor skills. He will also have an assistant to help him with the bathroom bc he has a lot of trouble with pullin his pants up and buttons, zippers, can't be having him walk out with his pants around his ankles, he totally would without hesitation.  Another thing I really wanted was for him to be able to eat his lunch, at the lunch room with his friends. I did not want him to have to go into the office and have to eat  alone, it just was important that he have the social time with his friends. So, by the grace of lunch time Gods, Noah's class eats lunch at 12:10, which is when he normally eats his lunch. It was so awesome, I about jumped for joy when his kinder teacher told me what time they ate. I know sometimes kindergartners eat really early like 11ish or even sooner, but they told me they do them last bc they are slower eaters and need more time, hence them being last. Also, since Noah has Delay Gastric Emptying (DGE) (His stomach empties really slowly) he has to have long spaces between his boluses. Normally breakfast is it 8 so, we need about 4 or sometimes more hours in between. So, lunch at 12 is a beautiful thing. They will let him go through the lunch line and get his tray of food, so he can be like his friends, and then a trained staff member will come and feed Noah at the table with his friends. So, it worked out amazingly.

Noah has come such a long way since starting school until know. He has grown so much it's crazy, but I still can't believe it's almost time for Kindergarten, it really went by fast. Things have gone so smoothly for him, from getting into prek to his IEP to his new school and them making things normal as possible for him. We are really lucky to have the team we do with him. Here's to hoping we keep with the smooth sailing!

Frustrating GI Call......GRRRRR

So, like I posted on FB a few days ago, Noah has been having a really rough time tolerating feeds. Lots more vomiting, gagging with just a few oz of food going in, not digesting...... So after struggling with feeds for almost a wk and a weight loss of a pound I called into his Feeding Clinic at Cincy  to see what they would like to do at this point. (yes I know it's one pound he has lost, to most kids, this isn't an issue, well Noah has not gained anything for over a 1.5 yrs..he will go up a a few ounces then back down...so it always bottoms out around 35-36lbs...which is still an ok weight for his height, but him not gaining anything in so long is becoming a problem.)

So, they call me this afternoon and we talk about it, and it was pretty much pointless. She asks about the pericatian, which is a med to help with vomiting and gastric stretching, making stomach able to handle more food. Well we have trialed this 3 times in the past 2 years, it's never worked for him. He continues to vomit the same amount we always trail ab 5-6 weeks and we cycle it, on 3 weeks off one. Well, she wanted to do it again, I told her we have tried in the past and with no results, why would this time be magical? Ok so I didn't it say it so facetiously, but that was my question, she said maybe he wasn't on it long enough. Well, I am calling BS on that bc she was the one that told me i wold notice a difference within 2 wks, of him being on it, well we did 5.5 wks. So, yea. I am not doing it again.

She had NO suggestions on feeds, seriously none, I told her I was hooking him up at night since he was puking so much during the day and we aren't getting in near enough cals, hence his weightloss, and she goes, "ok good I like that, keep doing that." What the what? I am calling them for answers and she is saying you're doing great, keep it up" umm, If we were doing so well, he'd not be in this slump. seriously our 20 mins of a phone call produce NOTHING. Her only advice was to call back in 7 days and if he was still struggling then they could talk about maybe doing continuous feeds.Sigh. really.....I am so glad I called. {I am rolling my eyes so hard my head hurts.}

One thing she ALWAYS says that drives me bat shit crazy is: "Maybe he has a stomach bug." They say this every damn time, every time......So apparently Noah has had a ":Bug" for the past 4.5 yrs of his life. It's amazing really. smh...I told her he was fine, playing, laughing, going to school, he isn't sick! She then proccedes to say that kids w craptasic motility that it can take weeks to get back to normal with their digestion....ok, I get it, but he ISN'T SICK! If he were, I wouldn't have called bc I know this already! I am not a tubie/motility newbie here! I am sooooooooooo tired of "well, maybe he has a virus" BS. It's like their go to when they don't know what to do. I am gonna smack my head on the phone if she brings that crap up again.

Then for fun I tell her when I vent him hours later, he still has food left, clearly undigested. She tells me "well it's not all food, there can be ounces of stomach juices in there." ok, I get it, I know this, but I can tell when food is being broken down and not. when his food comes out looking like it did hours ago when I put it in, well, it's not digesting....Now, I know I don't own a white coat nor have a degree hanging on my wall, but I am going to go out on a limb here and say, it's not digesting. heres an example. He ate lunch at school at 12. We get home from carpool 340, {carpool ugh, whole other story} I vent him bc he gaggy, out roars 135mls of clearly his blend from 12. {He doesn't get water after lunch, bc it's not in his protocol and lord knows they can't deviate from the dr orders.} He got bloused 5.5oz at 12.....

Maybe she was having and off day, maybe she was in a bad mood, but I am not expecting her to make my kid magically better, I really am not, I just wanted something from them. What, I really don't know, maybe something more of a plan, maybe look at his chart prior to calling me to realize that yes all the meds she wanted to throw at him, that we already did those, some years ago. Noah's been seeing them since he was 8 months old, they know him.....but today they failed. Again, I  don't know what I was really expecting...just something more.

So here we are, not tolerating feeds, only handling 4 oz before he starts gaggin and saying he is full, and crying when he sees the syringe. "don't feed me, my belly already full."  It kinda really sucks.