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.

Day 2 of New Meds to Help with Vomiting Update

Nothing too crazy is going on.....well maybe kinda.

So, we are working with two new meds to help Noah with his vomiting, Zofran and Periactin. Zofran is well known for being used to prevent nausea and vomiting. The Periactin is an antihistamine, but has many off label uses, one being that is helps with the interrupting the signal from the brain to the GI system that tells it to vomit when stimuli are introduced (a gag, cough, sneeze, etc.) We were doing them one by one bc his feeding team Dr's didn't want to do both at one time bc we wouldn't know what med was helping or not. Well, it didn't help him. So I called & asked ab using both of them, bc many of his tubie friends said they used both to help with their kiddos and it really seemed to make a big difference. So we finally got the OK and a plan in place to use both meds daily. We started this yesterday and so far NO PUKE! Zero.....He did gag when he woke up this AM, but otherwise he is tolerating 4-5oz boluses of a blended diet and doing really, really well. I don't want to jinx it, but it's been fanfreakintastic! I would LOVE for this to be our magic potion that helps him. It does seem to make him a tad more tired than his usual self and I am not sure if that will level out or just a 'side effect.' I'm not talking lethargic and laying around doing nothing, but he certainly wants to "calm down and watch TV" more than he should. I really hope it levels off, but it's kinda a catch 22....do I leave him on it vomit free, or a lot less vomit and have him a little slower than his norm, or take him off and let him puke 4-8 times a day...I am going to go with a little slow and just hope his little body adjusts. I really don't like to have him on meds to be honest, I'd rather him not take them, BUT getting him to feel good and not vomit multiple times a day, it's worth it. So we are on Day 2 and going well. It's almost time for his 3rd feed of the day so we shall see.

As you all know, his stomach emptying is hit or miss some days. Some days he will do awesome and empty what would I would call "good for him," other days, like yesterday he was so damn s-l-o-w. I know viruses and colds can slow down digestion, but he isn't sick. I don't know why some days are better than others. Anyways, we are waiting for the call back about setting up his Manometry testing. {Here is a link to info on that, http://www.cincinnatichildrens.org/health/a/antro-duod-mano/} We hope to set this up within the next 2-3 weeks. His motility Dr is out of town, so we are waiting on him to reok it and set a date to do it. Hopefully that can give us some more answers on his tummy too.

We are still waiting on his microarry testing, the one that wills how us how his little chromosomes are, if anything is a little off or missing. It's been 3 weeks and I am getting antsy. He was also tested for Fragile X and that came back normal. So we can mark that off. As weird as it sounds, I hope something comes back with his microarry. We know something is going on with him, but for a long time we fought against having him tested/doing tests, I really think it was denial, "oh he is ok, he will grow out of it, blah, blah blah." Yeah, now we are over it. We know something is going on, we are 3 yrs into this and are beyond ready to know what is up, why he has some of his delays, vomits, low tone, wont' eat.....the list can go on..lol So, if we get an SOMETHING from his microarry maybe it will help piece together the puzzle that is Noah.

A little Brock update, he is crazy and wild and clingy. Man, this child is demanding. Noah was SO easy, even with his issues, and Brock is much harder. he is clingy, fussy, whines, even at 18 months LOVES to be held. Oh, and the temper tantrums! O-M-G! If you tell him no to something he wants, not matter what is it, falls on the floor, tears, kicks....the whole 9 yards! DRAMATIC. We can't help, but laugh at him. He is so funny and as Noah says "Nothing, but trouble." He is something....whoosh! lol Noah was NEVER like this. He was content with playing alone and hand to heart, not that whiney even at 3....Brock is one minute happy laughing, the next screaming "UP UP UP! MOMMMMAA UP" and mad at everything. It's been a ride..haha. He is talking SO much it's crazy. He is starting to put words together, he says "I dunno, I love you...and his new favorite, "NO MINE NO NO NO!'' aren't toddlers the best. It really is neat to watch him grow and develop "on time" Noah was on Noah's time and was slow to do things, Brock has always been early...walked at 10 months, has currently 14.5 teeth...{This bottom molar may be the death of me} Got his 1st tooth at 4 months...he was early at most things, or maybe it's normal and after Noah seems really quick. In our house, he is fast, lets just say that. lol. We are still trying to fatten him up some. He is coming close to 22lbs and 32" He is so tiny, he truly is, and coming from past FTT kiddo, it wasn't fun or easy.....BUT he eats and likes it most days, so I will take him small and eating and gain a little slower vs another tube.

So there ya have it, an update!!

"Your not trying to get Noah off his tube, you must like it"

Well, I have had a "friend" tell me some things about how I should "help" Noah. So this blog is going to be to clear up this "friends" questions.

First off, are you freaking kiddin' me??? You have no idea what goes on daily at my house, at doctors or therapy appts. What would possess you to tell me how to raise MY child??? You really have struck a nerve, but let's answer your dumbass questions/responses.

1.) "Your not trying to get Noah off his tube, you must like it."

Your right, I am NOT trying to get Noah off his tube right now. He is no where NEAR ready. He has no idea how to eat..... chew, swallow, ya know.... the basics.....it's scary to him. My goal right now is to get him to TOLORATE feeds. Meaning, not puking, retching, gagging, being miserable. Make it a happy time. Not "oh this makes me sick," which is his mentality right now. All he knows is food makes me sick. How about this??? You throw up EVERYDAY, MULTIPLE TIMES A DAY, REFLUX since BIRTH, THEN tell me if you would wanna eat. You wouldn't. Yeah, I do LIKE his tube.....He would have starved to death long before now & yes as dramatic as that sounds he would have starved himself. Which brings me to point number.......

2.) "No kid will starve themselves."

No HEALTHY child, with any medical issues would. Your right. Noah obviously has something going on, which we are hoping to figure out soon. I have now found out many kids will indeed starves themselves when there is a medical issue at play. Who knew right??? I didn't. Thanks Noah for that lesson.... :)

3.) "You need to let him get hungry and quit feeding him all day."

Kinda brings me back to point number one. You know the saying "you don't use it you lose it?" Yep, kinda plays in here. He doesn't KNOW how to EAT! Even if he knew what the hell hunger was, he couldn't DO IT! He HAS NO IDEA WHAT TO DO! Noah also has volume and emptying issues, which is going to make it even more challenging when the time comes to get him to eat....Questions come up such as, will he ever be able to eat enough to grow and thrive? I have no idea. Will he ever get his tube out or will he always have to supplement with it? Time will tell. If I didn't feed him everyday, he wouldn't grow...kinda a problem.

4.) Your a dumbass.

Don't tell me how to "fix" my kid. He's not broken. A little glue isn't going to "fix" it. What makes you think you can come up with ideas to make him eat? If his specialists, regular doctors can't & more importantly ME, than you sure the hell can't. You have pissed me off. Thanks for that.

5.) Know what truley matters to me?

He is happy and healthy. That's it. Not you or your stupid ideas. I don't want your advice. Thanks anyways.