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.

Tae Kwon "Don't come back."

Noah had TKD on Monday and after class he was ask to not come back.

Wait, right? Yeah. It totally happened. Lets back up a tad.

Noah has had 2 private lessons and 2 classes with other students. Private lessons he did well, classes with other kids, well, I am not even gonna act like he was perfect, because he wasn't. He was all over. The teacher would show him his spot and he would stay there about 10 seconds before he thought he needed to investigate the other kids or other things in the dojo. He was overwhelmed with following the directions, than once he would understand, they would switch to something else, so he would be like "what??" then continue to do the 1st thing they showed him. I can't count the number of times they would say "Noah, focus, eyes on me." "Noah stay in your spot," and so on. Classes were 30 mins and he would need to be redirected a lot. {class ages were 4-6 yrs old} So, I am not here to say he was an angel and followed directions. There were other children there, running around, not "focused" too.

Here's my issue. The main headmaster came up to us after class, as parents and kids were filing out, right by the door, and said " Noah's not ready for this. His focus isn't there, he needs to come back when he is older." So, in a nutshell, Don't bring him back.

 I agree, his focus isn't there. I, 100% understand it's a disciplined sport and he was probably a distraction to other kids there. I get it. I am not taking up for his actions. What bugs me most was that he couldn't pull us in his office, which was not joke, 5 steps away, and talk about Noah. He did it in front of everyone. So, all the parents leaving and coming in to the next class can overhear.

Also, how is he going to learn if he isn't willing to teach him. He's 4! If they don't have time or patients to teach kids at that young of an age, then why accept them into classes? Up the age limit. His focus will come with age. {someone please say this is true???} He's had 2 classes! not 10, 15, 20, 2! I feel like they never really gave him a chance.

It's very clear Noah is developmentally behind socially with other kids. He gets way too excited and can't not touch kids, hugs them, want RIGHT in their face. We talk about space, but he doesn't get it. He gets so excited and can't rein it in. I worry about kindergarten and him doing the same.

I am upset that the headmaster didn't have the professionalism to talk privately with us. I upset bc Noah liked going and now he can't. I am upset with their attitude towards young kids. I am upset bc he has such few classes to learn and be with other kids and learn what is appropriate and what's not.  I am sad bc yet again, here's something else my kid is behind on. I really thought this would be good for Noah, I guess he was too young. Maybe I rushed him into it. Maybe the center isn't good for young kids, maybe I am thinking too deeply about this.....I am not sure. maybe, maybe, maybe. Sigh

Feeding Team Appointment

We had our usual every 3 month Feeding Team appointment today. 2 hours with two small boys in a windowless room will make you a little bit crazy. Albert forgot to bring their toys in from the car, so they were pretty bored.

Appointment was ok. Noah weight is a concern. He hasn't gained hardly any weight in a year. About 1.5lbs. Since January he has gained .2lbs. Not 2 lbs, point two pounds. He has gotten taller though. He is 35lbs and 40'" So he is proportionate, we just can't get him to gain weight. He has a cal goal of 1320 a day. We struggle to get that in. Our issue is volume and emptying. We can only do ab 5 oz every 4 hours of a blend. If we use his peptamen than we can do ab 5 oz every 3.5 hours, but he tells me he feels better with a blend, hence why we mainly do a blend. Cincy is pretty Pro Blend so, that's nice, but we can just never get it all end. We were doing about 3 5.5oz boluses of blend a day then hooking him up at night. Some nights he rocks his feeds, others he wakes and gags and throws up 3-4 times. This child has no pattern to his vomiting, he is so random and that makes it hard to pinpoint WHY he does it. I know back in the day a dr said maybe he was vomiting for attention, well, when I mentioned he wakes throughout the night doing it and that surely wasn't for attention, he shut up quickly and we moved on to another dr.

It's just frustrating. I can pinpoint when he stopped gained as well. It was when we started blending. he was on Neocate Infant with added Duocal bc way back then we couldn't get volume in he needed. Well, at this time he was a chubster. We started  blending around 8 months, {try to help his vomiting} and he didn't gain for a long time, which was ok, bc he was a tad heavy. Now it's biting us in the ass a tad. Eventually he is going to have to have more calories. *their main concern is since he dropped on their charts then he is going to continue to dropt throughout the summer* 

So, they gave us a 1500 cal blend to try and see if it helps and if not try adding duocal to his peptamen. We tried peptamen 1.5 and at first it was ok, but then he started having not so good poops, so we marked that off our list. If that all fails, I have no idea what's next.

For fun I brought up "How are we ever going to get this tube out?" She said we are "no where near getting it out." Which I know, but to have it reiterated is annoying. ha, I know he has a lot of work to do in the mean time, as he eats nothing. True story, the other day I asked him 'what do you want for lunch?" He put his little finger on his cheek taping, in deep thought and said "ketchup and ranch." So, yay, we have a long road ahead of us. lol I don't even know why I asked since I know it's going to be a long time out to even think about it out.

So, here's to weight checks and new blends for a month.

I'll Take Puke Any Day

The other day I was scrolling through my Facebook feed and  I just kept scrolling past post after post after post of people I went to school with. It was all about how awesome their jobs were, getting new jobs, out partying all night, the new loves in their life be it cars, animals, people, traveling to other countries [and not just to the grocery store :) ] For a moment I thought: "What the hell happened to me?" Why wasn't I "living it up." When I was younger I always told my mom I was going to marry a brain surgeon and live on the beach and soak up the sun while he worked. Ya, that didn't pan out either. Shocking.

Here I am married, 29, 2 kids stay at home mom. Not what was in my plans.

Plans change. Life happens. Happen to not marry a brain surgeon, but got married and then that's when life really started changing. We got married in July, got pregnant in October. Noah. My tiny lil 4 lb Noah. He came in the world with a BAM earlier than we expected and threw us for a loop. I remember after his dramatic birth, he was in the NICU and I wake up in the middle of the night and Alberts not in the room w me. I FLIP! I think something is wrong with Noah and I run as fast as I can to the NICU...{ok waddle as fast as a c section momma can go.} I get the the NICU, ask if my son is ok, they look at me like WAIT CRAZY WOMEN! Tell them my name, scrub in, get buzzed through the door and go to where Noah's spot was..He wasn't there. My heart SUNK. Then a nurse goes, "we moved him over here." I am sure she could sense the panic in my eyes so thought she should intervene. There is Albert, holding Noah, just rocking him and staring at his tiny fingers and his tiny face with all his wires at 3am. It was a good moment, but then I fall to tears and tell him to NEVER leave and come up here without telling me....then I had to sit and rest...then it was time to pump. sigh. Can 't win em all. BUT in the moment, all was ok. The boys were ok. Noah was content being held and snuggled by daddy.

Then we get home with Noah and all hell breaks loose and you all know how that story goes. Again, not what I planned. I planned on Noah eating, thriving, me being able to go back to work....'normal.' Normal never happened. Then after Noah's 1st birthday we decided to try again for a baby. Well BAM, happended super quick. Brock. oh Brock. He completes us. Corny I know. I'm gagging as I type it out. Thanfully, Brock's birth was very normal and he got discharged with me, an odd feeling as a nicu mom. Brock's been very healthy thankfully.

So, when I read other friends posts and they are talking about how amazing this beach is, or how they bought this new car, or how they got a new job...in another country, how they can just get up and go without planning, thinking, for a moment, I get jealous. When I am sitting with Noah's barf in my hands, ya the beach sounds inviting. When Brock comes up to me and says "HI MOM!" in his sweet voice, THAT'S what I want. Nothing can come close to the moments I have with my boys. When Noah comes up with something crazy and just blurts it out, I crack up, they make me smile on the worst days, even if they are causing that worst day. I wouldn't want to exsist without my boys. I can't imagine how dull it would be.  I wish Noah's GI tract could wake up and realize food is good and digest at the right speed, sure I wish when we plan to go some where, as simple as Kroger, I didn't have to plan around Noah's feed, bringing a puke cup and praying he doesn't barf in the store. I wish I could take him a get him a Happy Meal and he eat it like a typical kiddo. I do wish when we are out and it's time to feed him they wouldn't stare in disgust or just stare at all. If anything, I'd rather you just come up and ask what I was doing vs looking at him like you might catch a G tube. I assure you, you won't.

My life isn't what I planned, but it is what I want. I'll take puke any day.

Feeding Changes and Swapping Formulas & of Course....Puke

So, semi quick update.

Noah has been having a rough time tolerating his feeds since Dec. not sure what changed, but he just can't seem to tolerate much of anything. No matter what or how we feed, it just comes back up. After talking to Dr's on his team we have decided that blousing Noah is just not in the cards for him now. Since he has his motility issues and volume issues from his nissen, doing small feeds of 4-5 oz are making him uncomfortable. We discussed in depth what is causing his issues, his small stomach, and his delayed emptying and his messed up nerves in his stomach its just a mess. It doesn't seem to be getting better. We were running his bolus over 45 mins and he would clearly be uncomfortable during it. He also managed to puke while we were at the dr, they seem to think when I say he pukes, he "spits up" No, He pukes his entire feed. So, 'luckily' they got to see him in action. I don't know how many times I have heard "I sick, my tummy feels bad." I know our issues are small in comparison to some, but it still sucks to hear your kid say they feel like crap from eating.

I'd love to say this is going to get better, we will be able to control his vomiting and he will stop vomiting and start eating, but it isn't looking promising at this point. Honestly, I am OK with it. It's so our 'normal' now, seeing him eat would be so weird, amazing, but weird. Even Brock will come up to him and rub his back and say "OK Noah?" {Are you OK?} Brock will, Lil devil, even get a cup and make puking sounds in it like Noah. sigh.

We did trial Peptamen Jr.which isn't as broken down as the Elecare he is on and he does SO much better on it. yay, there's puke, but NOT NEARLY what the Elecare does to him. Which seems so weird he would tolerate the Peptamen over the very elemental elecare. So, I was on/off the phone today for 3 hours trying to switch his milk. It's an annoying process, WIC covers X amount then home health will pick up the rest, so it's just back and forth from Dr's faxing orders to both places, getting WIC to change his order then, WIC then has to fax to home health {HH} that they will only cover X amount so that insurance will pick up HH tab. It's insane. lol I am very thankful it is covered, it turns out to be $900.00/month....it's crazy! It shouldn't cost that much. It's like a mortgage payment.

All in all, he's a happy kid. He will puke then jump up and go play. It's his "normal" so it doesn't slow him down. We are also weaning him off his Neurontin as it doesn't help and no reason to keep him on it. So, again, we are going kinda back wards with the continuous feedings, but it is what it is and he is happy and less pukier....{is that a word?} At any rate, here's to less vomit.

 

Feeding Team Appointment, Food and Puke Journals and Random Thoughts

So, Noah had his 3 month follow up with the feeding team at Cincy. We go every 3 months for them to see how is doing. It's a long appt. typically at least an hour and half to 2 hours. LOTS of waiting. He lost one pound, but is a very tall 42." he is crazy tall. His grandpa is over 6' so, he is might be that too!

Well, they weren't happy he lost weight. Yes, he is not Failure to Thrive {FTT} anymore thank goodness, but still weight loss is NOT what they want. Yes, he was a bit chunky too a while back, but he has had a significant drop in percentiles since then...just in 3 months he went down 5% Eventually, if we continue at this pace, he will run out of his chub. So, they think with his throwing up, which STILL isn't under control, is making it much harder. Add in his motility issues and it's a bit more harder. His motility DR and GI DR want him to start back on neurontin {for his motility and vomiting issues}. So we will start that today, then they want us to meet with his GI in 2 months as opposed to his normal 3 months. We were trying to get his blend in all during the day time vs having him hooked up at night to his pump. Well, apparently that isn't working. They asked me to keep a 3 day food and puke journal...which kinda annoys me. I know what I put into his blends...I can add calories. I am not sure if they think I am not calculating right or what, but as they wish, I shall annoyingly document every barf, gag, retch, feed, bolus, night feed and then they can go over it. His Dr he say yesterday thinks that if we write it down and let them look they may see what is causing him to throw up...We have been analyzing his diet and barf 3 damn years now, so they want 3 days of journaling to see if they see a pattern???? Good luck. {We saw Dr. Leslie not his normal GI} that kinda bugged me. Also, want to switch him to Peptamen instead of Elecare. Sigh. What a pain in the ass that is to switch home health care order. they gave me samples, bc I don't want to have to go switch it all and it not work for him. Then they said there was no point in coming to the feeding team anymore since he really isn't eating or near eating. Ok, so we will see Dr. Pentiuk in the GI dept vs feeding team. Which is ok, but it kinda sucks hearing them, saying "well, we don't know what to do anymore bc nothing works, so we are going to pass you along now." Story of his freaking life. I don't understand how he can have SO much testing done and the only thing is his motility that comes back abnormal. Not that we want something wrong, but we all know he has SOMETHING going on . It's getting to be very, very annoying. I am very tired of puke, yesterday was 4 times he threw up. She mentioned another GJ, but we really don't want to go that route unless he loses more weight and we simply can't keep his weight up with regular G tube.

We always joked at home that "hey he might have his tube forever." But hearing a dr say it might happen, kinda dampness the mood on it some. It's is the end of the world if it turns out true....not at all. It could be worse, much worse, but no one wants their kid to eat by tube. we have long long learned we are on Noah's time. Meaning, he is going to do things when its good for him. He crawled at one, didn't walk until 2. he did these things, but very delayed. So, we don't give up hope he will eat orally. He may one day and that will be freaking amazing if he does, hell brings tears to my eyes just thinking about it. lol I can't imagine it, but at the same time all four of us sitting down and ALL of us eating together is like a dream.

I already worry about if he has his tube going into school. It's going to make him stand out. I worry about him puking in school. he will probably be made fun of. Lets be real, kids aren't always nice. I worry about this now, crazy as it seems. I have read some good and bad things about tubies going to school. It makes me anxious. Questions like, "Will be able to 'eat' at lunch with his friends." "will kids make fun of him if they see him being tube fed?" "Will he have to go to the nurses office to eat alone and thus making him more of an outcast?" No one will feed him as I do...kwim? I got it down, I know if his stomach isn't emptying right and we have to wait longer to do a feed...will the person feeding him vent him and see?? I have no idea. Probably not. Will they then feed him, he is over full and puke all over? I dunno. Will he even have his motility issues and volume issues then?? I dunno. I hope not, but who knows. It makes me want to keep him home and never let him out. I know, I know, this isn't this right choice and he needs to get out, but these things make me queasy just thinking about it. No parent wants their kid to be out casted or bullied or made fun of, with Noah having his issues, it will easily make him stand out. I have time, he might even have his tube out by the time school comes...maybe this won't even be a worry in 2-3 yrs time. I hope not, but in reality we r 3 years in to tube feeds and puke, that it's not looking real promising.

Though through all this, he is one happy, sassy, funny guy. He has an amazing spirit, if I can say so. He is always so brave and tough and nothing slows him down. He is so much stronger than I could ever be.