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.