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.

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.

Update--Been a while

Wow, been a while since I have posted. Not too much going on. Noah is still the same, our goal is to get him all on a blended diet as he doesn't tolerate night feeds for some reason, no matter the rate, or g or j fed. He wakes up a lot, like 10-20 times when he is fed at night, vomiting, crying out, rolling around. Clearly uncomfortable. We tried is rate at all speeds & he just doesn't tolerate it. Which would be great to cut night feeds if A.) we could get in what we need during the day w/o vomiting it up and B) getting him to digest it so we can get the volume in. He is still holding steady at 34lbs, which is good, but still no weight gain, he may go up or down a few oz, but typically he is 34. His GI isn't impressed with no weight gain as its been over a yr at that weight. It seemed he gained and gained fast and now nothing. We have tried increasing his calories to 1,600-1,700/day and still nothing. It's really crazy. I am not sure why he won't gain anymore. He is having a hard time in the heat--he over heats fast and will puke and gag....and puke and gag....then more....sigh
  We go to genetics on the 18th, so I am excited about that. We have gone back and forth trying to get him in and they kept saying he is ok, he doesn't need to go, blah, blah. He is 3 now  and we have been dealing with who knows whats up with him for a long time with no answers. No one knows why he won't eat, pukes a lot, doesn't digest, his low tone, his delays....Yet, he "looks ok" so he gets blown off. Frustrating. So I am really hoping this genetics dr has some ideas on him. There is SOMETHING going on...Hope she is the one to put the pieces together.

Brock is a crazy man and funny as ever. He is trying to talk and his new word is bubbles. Really cute. He has finally gained some weight, but is still a tiny little man. He eats well for the most part, last night for dinner he ate 3, yes 3 small pieces of pizza and half a pear, then he had some cottage cheese about 2 hrs after, a huge bowl. I didn't think he would eat it, but he down it and said "want more......eat" lol he just is a slow gainer. He is cutting a bottom molar and damn, it takes a LONG time to get it in. I forgot how long it takes to get teeth in. He has 10.5 teeth thus far! He is really SOOOO much different than Noah was. It's a nice change. He mimicks a lot and Noah thows up into a bowl he will go to a bowl and lean over it and make gagging sounds too. sigh. Not exaclty what we want. http://www.youtube.com/watch?v=LbndG5U5EBw&list=UUNC6Em8zLLu0PWpo_MdAwAw&index=1&feature=plcp Brock saying Bubbles.

I will update after genetics!

Just a Noah update & Manometry Testing coming up

So, I haven't updated little man's blog in a while. Man, he has a lot going on.

Let's start with EI.

He is getting ready to age out---onced they hit 3, you gotta move on out. We had him evaluated by the county preschool program. He did fairly well. We do not know if he was delayed enough to get in or not yet. Our meeting with them is coming up at the end of May. Honestly, even he got in, we probably wouldn't be sending him. While it's great for social skills, which he needs of course, it's just a lot of time away. It's 8-3ish Monday-Thurs. They really don't focus on feeding, his biggest issue of course--His speech is pretty good....he tested in Dec, at a 3.5 yr old level. I hear speech is what really gets a kid into their program, as feeding doesn't really effect his learning in a school enviroment. So, what we will probably do is his current SLP/Feeding Therapist sees kids outpatient at Kosiar and we will keep him going 1 hr a week with her. He knows her, really likes her and she knows him.

His birthday is less than a month away! June 6th...crazy. 3! It's been a long, tough road at times, but he is pretty amazing.....most days :) He is getting a little sassy though!

Coming up closer, May 17th, he will be inpatient for motility testing. He will be having an antro-duodenal manometry. "Manometry is the measurement of pressure or contractions in the small intestine. The purpose of antro-duodenal manometry is to determine how well the antrum and the duodenum work together." So, basically to see how his stomach and intestines work together....it is an overnight stay at Cincinnati Children's and he will be put under GA to get all the probes placed then we will be sent to a room to hang out while they do the testing. He will be connected to a small pump, which pushes water slowly through the tube and into your child's small intestine. This in turn is connected to a computer.  As the small intestine contracts and tightens around the tube, it stops water flow. This contraction is recorded on the computer monitor and gives the doctor a pattern of activity.

Sounds fun hu? sigh, no, really dreading it. I hate having him put under, I hate making him go through things that might not show an answer. The botox was a fail, I hate I put him through that. I am afraid this will be the same. I really went back and forth on even doing it, but Albert and I think it may give us some answers that 'could' explain things. I really think his not eating is medial. There has to be something going on GI wise that is causing this. While I am happy things come back normal, it sucks having no answers to anything almost 3 years into this. I am going to push again for genetic testing. We keep getting told no he doesn't "look a kid with genetic issues." really?? That's just silly. There is SOMETHING going on. It's beyond time to figure it out.

Trying to think what else, he has a ton of OT and Feeding appointments coming up--trying to get the most in we can before his plan runs out. Oh, we  have restarted allergy shots with his new vials in hopes that helps with the gross congestion. Feed wise--we are working with the feeding team at Cincy and the dietician on a new blenderized diet for him. He would just barf up elecare all day---we would thicken 4 oz of elecare and right after he would puke and just say "im sorry mommy, I sorry." Heartbreaking. He does do better on a BD, but will still throw up. Of course my goal would be to get him on a full day of BD and not being hooked up to his pump all night. That would be a FREAKING dream. He has been on his new BD for about 3 days with only ONE SPIT UP! like a real just he burped and up come a tiny bit. He was even impressed! He said "mom, not throw up!" lol Poor kiddo. It has to be miserable to feel so bad with food.  He is doing really, really well, fingers crossed. We have cut a lot of the fats that use to be in his blends, to help with digesting better, seems to be helping. He is up to...ready for....... this 5oz every 3 hrs!! It's pretty amazing for him. I just hope he keeps on this path. I LOVE making his food as dumb as that sounds. I like the calorie counting, the figuring out healthy junk I can throw in, Silly I know. His weight is good and he is growing well, he is is full of energy and spunk....what more could I want?

Little update on the botox

Not much going on with Noah. We were trailing small boluses after his Botox to see how his tummy was emptying. He emptied better, but the puke it's never ending. Frustrating. So now we are running continuous G feeds to see if that helps. He didn't throw up yesterday on G feeds. :) my concern is I'm running him at 80mls hr, which is great for G feeds for him, but I vented him & he had 60 mls in there. Not sure how fantastic that is.

I am ab 96% sure his Botox isn't working. When we were doing the small boluses, I gave him 4 oz of a blend & 3.5hrs later he had 55 mls left. Grrr. I want to know why his stomach doesn't empty right. So, we are probably headed to Cincinnati Children's Motility Clinic next. If his emptying gets worse, it's back to J feeds. Yesterday he did say his tummy felt "happy with packpack." when I was trying to do bolus feeds, he would scream, run away crying saying, " I get sick no feed me." :(

Noah's feeding therp still says there is something medical causing him not to eat and we are making very small progress, if any. She thinks until we can figure him out more we won't make any real progress. I mean, why would you want to eat if you threw up all the time and you always had food in your tummy? I have a feeling that tube is going to be in his tummy for many more years.

On lighter note Brock's birthday is the 23rd. So crazy. I asked Noah if he's going to eat cake he said "uh nope." lol.

G Feedings, Biopsies Results, Botox Update & Never Ending Vomiting

Well, It's been a week since Noah's procedures with the botox. It's been a crazy week at best.

He had a GJ Tube placed while he was under & I SPECIFICALLY asked his GI if the chances of it curling up back into his belly was increased bc of the botox, he assured me that is was rare. Well, guess who's tube coiled back up THURSDAY? Yep, it sure did. I was so angry and sad. So I spoke with his feeding team Friday and we agree that we would sedate him and get it put back in. Well, come to find out they won't sedate him to replace it. {we agreed to sedation because he is a really tough time getting it changed. He is hysterical and is traumatized by it, they strap him to a table and do it that way, which messes with his sensory issues and he HATES the X Ray machine over him....HATES.....} It was either do it awake on Friday or do it Saturday under general anesthesia. After thinking about it, we decided to do it awake. It sucked and was horrible and I will never do that to him again. There were tears all around. Noah walked into the room and lost all baby control. It was super fast, about 8 mins, but its so very hard to see your baby strapped to a table and them poking wires in and out of your babies belly.He did ok really, he didn't cry too much and was pretty still which made it go by fast. I am not gonna lie, I totally cried. Strong momma.....nope.......Anyway, it got replaced and so far so good.

We started G feeds Monday. They were going ok. He is digesting better. Food is not sitting around like it use to. He was digesting so fast, it's had me worried honestly..lol....I worried about dumping. He was empty in about 1.5 hrs. During that time, we tried small boluses, about 2 oz. About 30 mins after we would finish a feed he would start swallowing really loudly and a lot over and over and over.......he would burp a ton and bend over forward, like belly to thighs and get spacey, like he was doped up. It was very odd, the swallowing he has done before, but the spacey and bending over was all new. Like he was there, but not there at the same time. I am not sure what that was about, that has gotten better. Also, when I would vent him even an hr after a feed I couldn't get anything out.....ne food, ne spit bubbles, nada. That was so odd....we would have to let him vent for 5-10 mins before it would come out. Before the botox, it would just roll out of the extension no problem.....so weird. Monday he did well. Tues, same volume, but he threw up once. Humm..ok, still digesting ok, he threw up again, right after a feed.....and once more.....wth. Today, we have tried slower small boluses, 2 oz, and he has puked EVERY SINGLE ONE AT LEAST 2 TIMES!!!!!! GRRR---So I did his backpack on continuous for a few hrs, he was ok, then blah, up it all came. I don't know why he can't tolerate food into his belly. I simply don't get it. It doesn't matter if it's blenderized food, elecare, even water gets puked up most days. It doesn't seem to matter how fast it goes, how slow it goes...it comes up. His last small bolus was at 12, and at 3 he still had a small amount come out. Today has been a huge fail. He will see me grab his syringes and cry bc he says, "no I get sick...no." Then runs away. :( It SUCKS. So I am going back to J feeds for a few days. He isn't sick or act like he is getting sick, so it's not because he is ill. I just don't understand. Oh, his Biopsies came back on Friday, super fast hu....I was surprised, and they were all clear. Nothing abnormal, everything was perfect and his scope was clear and looked great. Not even irritation from his continuing vomiting. It's not normal, his vomiting & unable to tolorate food into his belly. Not that I want something wrong, but it's just so weird to me everything always comes back ok.When he is hooked up to J feeds, he is happy, funny, a goofy lil 2.5 yr old....I feed him into his belly and he is fussy, crabby, extra whiney....that tells me he is not comfortable, something is bugging him....WHY? I have no idea. I wish I had the reasons.......He is digesting better, but he won't stop vomiting and who knows how long the botox it going to stick around, could be weeks, days or months....we will have to wait and see. I am happy he is digesting better, but the vomiting is not better at all. What good is having better digestion when he can't keep food in there?

My searching continues.

Feeding Appointment, Botox and a New GJ

So, Noah had his Feeding Team appointment today....it went ok. The dr called him "complexed." No one ever has, I suppose he is being as no one can figure him out. He still has no diagnosis besides delayed emptying which his GI said he "failed badly." His emptying has been worse this past month. I am not sure why or what is going on in that tummy. He goes thru spells and this is a long one. His small bolus of food is sitting for over 5 hrs at a time. He can't get his calories in and in that he hasn't gained a single ounce in ONE YR. Noah is no longer Failure to Thrive, but he needs to gain weight and one year is just not ok without any gain.

 He is STILL vomiting no matter what we try. This past month he has vomited most feeds, a few times each. So he is puking anywhere from 2-10 times a day. Still. It sucks. He is now saying his tummy hurts and will then projectile vomit and he won't stop vomiting until every drop of food is up. It's painful to watch, much less to go thru. Can you imagine throwing up your b-fast, lunch, dinner, snacks, everyday, multiple times each every day? It has to be painful.

Our plan for now is to get a GJ placed. He is currently sporting a regular G tube. It's not working. He is vomiting so much and is miserable. We are to stop bolusing and to put him on continuous feeds. This is a step backwards, but it's the only way he doesn't throw up as much and he seems to be much happier. The problem with G feeding continuous for Noah is his emptying. It just doesn't empty so it sits and we can't run him very fast bc it just sits in his tummy. This leads to a few issues. 1) He can't get in what he needs calorie wise to grow, 2) he pukes it up then once again, losing calories, no growth. 3) He has to be hooked up 24 hrs a day and even at 50mls/hr that is only 1,200cals/mls not his goal of 1,400. We can run his G no more than 50mls/hr and that is pushing his tummy. {that's less than 2 oz an hr} I fought against a Gj bc it's really hard on Noah to get one places. He is hysterical. Screams, cries, shakes, gags, vomits, starts wheezing . He now sees anything that looks like an x ray and he flips out & if you touch his tube he freaks out and panics. He freaks out over anything medical, from weight checks, to anything, no matter how non-invasive. He is tramatized from Gj changes. I requested for him to be sedated to get it done. They agreed and that's great. I hate him being sedated, but I hate even more for him to go through all that for 15-20 mins, it's to the point where he is gasping for air. It's so hard for him and for momma to hold him down. Hurts to watch.

Our next stop is in IR to get another scope to look around and to do a dialtion and botox to his pylorus to keep it open in hopes it will help his empyting. They are now able to do all this in one stop, which is fantastic. We thought it was going to have to be 2 different visits, 2 sedations, but with it a one stop shop, that's much better. Anything to make is easier for Noah. With the botox GI said it could work for a few weeks, months or not at all. Nothing thus far has worked on Noah, we have tried several meds with no help at all, well maybe for a few days and then nada. IF Botox works then he would need to do it every 4 months, if it doesn't work then we are being refered to the motility clinic and do more testing there. The tentative date is set for next Wednesday the 22nd, they will call tomorrow to confirm this after getting it approve with his insurance of course, until then we are on continuous G feeds.

So, that's where we are now. Wish us luck and for Noah to feel better.

Ever Had That Feeling......

That your missing something??

 Noah's whole life has been like that, but recently, it's just like a neon sign glowing....We are totally missing something with him medically, it's so frustrating. He has had a ton of specialists, testing, but yet, never an answer. There HAS to be a reason why he stopped eating when he was 4 months old. There has to be a reason why he gags, rectches, pukes all the time.  Most DRS say it's behavioral, well, lemme tell you, when he wakes up at 2-3am from a deep sleep and pukes all over, while not being sick with a virus, that is NOT behavioral. Yes, I do agree at times it is, such as when he doesn't want to do something, he can make himself sick, but other times he can be doing nothing and just all of a sudden puke.

I am tired of being blown off by drs because he "looks good." Well, if it wasn't for his tube he wouldn't look good. Hell, he probably wouldn't be here bc he would have starved himself to death. I really like his team at Cincinnati Childrens, but I want more. I want them to look deeper, not that I think they don't believe me about him, they have seen it for themselves the gag, vomiting from looking or touching foods. I want to know why he can't handle volume, why he has emptying issues..... They have offered advice, and treatments, but I feel like its a bandaid, that we are just covering up something bigger. I do not have a clue what it is, but it's something. It needs to be found.

I don't want him put thru unnecessary testing by any means at all, but I think he needs to be seen by genetics there, get their take on it. I really disliked the genetics here in Louisville, he was a jackass, to be blunt. We never took Noah back to him bc of his attitude and what they did test for came back fine. Again, I am happy it came back clean, but then here we are at zero again. It wasn't a lot of testing and I am sure there is more that could be done. I think that is how I feel, there is more that could be done, but because he looks great and is developmentally doing well, he's "ok." He didn't do thinks until a lot later than the norm, he didn't walk until he was almost 2, like a week or 2 before his 2nd b day. He didn't crawl until he was almost one. { I put that backwards.} Anyways, he didn't do those things bc of his low tone, well why is he low tone.....never got an answer for it.

There are so many unknowns and it's driving me crazy. Love my lil man so much & I refuse to give up.

Aging out of Early Intervention and Decisions

Ohhh....so much to think about!

Ok, so Noah ages out of his Early Intervention when he hits three. He is currently 2.5. We know we have to continue therapy sessions, the problem is where, when, how much, does insurance cover it, how many times can he go, weekly, monthly.... the list goes on and on. We can try to find a place that will accept him and if they take his insurance. We can pay out of pocket for therapy, but it is very expensive. We could inquire about an inpatient hospital program, though we aren't close enough for that to really throw that in the mix. We can do nothing at all. Well scratch that, he has to have some kinda therapy. We are meeting with our local school district preschool on the 24th of this month. As I understand, he has to "qualify" for services, be delayed enough to get services. They said they main thing that gets children in is speech, well his speech thankfully, is really great for a non eater. He tested at 3.5 year old skill level for speech. Eating issues, g tube dependency, will not qualify him alone. It's, I believe 4 days a week & I *think* 4-5 hrs. a day. So this brings up new questions....he isn't potty trained, will that be a problem? I know some preschools will only accept fully potty trained kids. Will they feed him while he is there? {This might be a legal thing and they have to, again, not sure.} Do we even want him going 4 days a week/4-5 hrs a day? I am not sure. Does he have to go everyday or can we just pick certain days we want him to attend? What therapy is offered? How is he tested to even get in? He may do great on their testing and they say sorry no he doesn't qualify and we have to look else where.

For so long, almost 2 solid years, he has had 1st steps. It's been nice, they come to our house, he has gotten PT, OT, Speech/feeding each 1 hr a week. We have became friends with most of his therapist. Though there was a few in there we didn't mesh well with, that's life. So, it's kinda a scary change. Noah has SUCH a long road ahead of him. It has taken 2 years to get him to bite food into, he spits out whatever he bites into, but he has made progress, just super, duper slow. He still eats/drinks nothing orally. He will have his tube many more years. We want to make sure we do what is appropriate for Noah, help him the best way possible. I don't want to make a choice and it not benefit him the best. Ideally, I'd like to get him in home therapy, less distractions and I can be close by..... ideally I'd love for him to wake up tomorrow and eat everything orally.....not gonna happen.

So, we will now more on the 24th--I will have a big ole pad of paper with questions I am sure. Dr's. probably hate me bc I always take a notepad with me full of questions. I just don't want to forget something and I want them to answered. Any way---if your child aged out of EI services, what did you do? Love to hear about it.....Thanks.

2nd Chiropractor Visit, Puking, Alternative Medicine & Brutal Honesty

Went much better!

Noah still flipped out when the dr put up his x ray....will he always be scarred by them? I hope not, it has to get better. Anyways, the chiro mentioned starting him on Aloe Vera juice. I don't know much about this, but it is suppose to help with inflammation and his thinking was all the vomiting makes his throat sore, so this might help. Despite our best efforts and trying every med and trick under the sun, Noah still vomits daily. No matter what we do, we can not get him to stop fully. A lot is behavioral, so hopefully as he gets older this will get better. Both boys got adjusted. Brock just sat there like a little champ and liked it, he has one LOUD pop, I was surprised by it. Didn't faze Brockie in the least and he was finished pretty fast. Noah did sit on the table and was ok with it. Him and the dr have to work on their relationship. lol. He said Noah was very tight and he also has a few loud pops. Noah was in a MUCH better mood after his adjustments. He gave all the ladies there a hug by, he may be a bit of a flirt.

Noah is suppose to go 3 times a week for 3 weeks, then 2 times per week for 4 weeks then once a week for 6 weeks. THEN, {still with me?} 2 times a month for 4 months and finally 1 time a month for 5 months. Whoa, a lot of visits, so Noah better learn to like it...little booger. Brock is mainly for maintenance. He is suppose to go twice a week for 3 weeks then once a week for 4 weeks, then eventually once a month for 7 months. It's really nice bc it's literally 3 minutes up the road.

We have tried tons of meds to help Noah, none which have done anything significant for him, so now we are looking more into alternative meds. DH and I were talking ab it and if it's non invasive and can possibly help him feel better, why not? I have been doing a lot of research on chiropractics and kids and have gotten nothing but good feedback on it. I have talked to several moms who take their kids and love it. Of course at any point if Noah seems absolutely miserable, then we would stop. I just can't stop looking for things to try to help him. I refuse to give up and say, "sorry buddy, this is as good as it gets." It's not. There has to be SOMETHING out there. There has to be a reason. There has to be something someone is missing. My duty as his mom is to help him and by damn I will. I am not giving up. I am SO thankful he is so happy and loving and sweet as he is with all the crap he goes thru. Can you imagine puking 3-5 times a day since you were 4 months old??? He will puke, which looks horrid bc he has a nissen, so he sounds like he throwing up his stomach, he gets all red, and sweats and shakes at times, his eyes water and get bloodshot. He will do this for a min to 3-5 mins. It's exhausting for him. then he gets RIGHT back up and plays like oh, this is what kids do....this is normal. How miserable that must be, what that feels like? How his throat feels from puking so much. It's all he knows. He doesn't know different. It's his life. I refuse for that to be his life. Would you accept that for your child? No, you wouldn't.

We have gotten some negative feedback from people about taking the boys to the chiropractor. Really? I don't see the big deal. Come to think of it, we have gotten lots of feedback from people about lots of things in the past 2.5 yrs. Imagine having a non eater with "issues" then getting pregnant again! Wow, the feedback from that was insane. "Your having ANOTHER one...Noah's not eating." really? I haven't noticed. "How are you going to afford another child, you stay home with Noah." ugh People have really said these things.

I guess it's fair game if I post on FB about my life. People can comment, but I ask one thing before you judge us or say something dumb like, "well, I could get him to eat/he'd eat for me." {Which I effin' despise that line, if you can get him to eat, DO IT! I'd LOVE for you to! BY ALL MEANS!} Walk in our shoes for a week, hell a few days would be sufficient, THEN, and only then, can you tell me what you think. Or how I am going to far trying different things. Oh, and if your going to say it, don't say it behind my back, tell me. Don't tell me I am hurting him by taking him to the chiro. How I am 'risking his "being." Just because he looks "good/normal" doesn't mean he is. EVERYONE could use an adjustment. Why not try something easy like a chiro. if it may help? Frustrating.

We may not have the means to go do things we use to, funds are tight, I'm not going to lie, it's not easy, it strains relationships, friendships, family. You find out who your true friends are. Dr appointments, therapy, making formula, I NEVER thought I'd have to still be making my 2.5 year old formula everyday. It sucks. Brutal honesty, I don't like feeding Noah thru his tube. I wish SO badly he would just eat. It's so simple right? You put food in chew and swallow, simple. Not for him and it breaks my heart to watch him struggle with something that should have been so natural for him. There are days I still do the WHY ME crap. Why him? Why can't things be easy? Why does everything for him have to be 20X's harder? I am also thankful for Noah's tube, I wish he would eat yes, but I am very thankful he has it and I can feed him & he thrives.Then I know, there are people who have it much harder than us They fight diseases they never should have to and are so much stronger than I will ever dream of being. They are examples of how people should be. They go through so much pain and yet, so happy, full of life. That puts things back in perspective for us. Yeah, him not eating sucks big time, but it could be worse.

I love my boys more than anything in this world. I wouldn't trade them for anything. They make me so happy and watching them grow is amazing. There is nothing more amazing then Noah coming up with a smile and saying, "I love you mommy." Or going to get Brock in the morning he and gets a huge smile on his face & is so happy to see me. The random cuddles throughout the day with both boys. These are the things to keep on going for. To get Noah better. To take the bad, but then have them do something so small as giggle and everything is right in your world.....even if it's only a few minutes.

Frustrating Dietitian Appointment

Noah met with his dietitian yesterday, he has lost almost 2 lbs since last January. He was a hefty 32lbs 14oz, now he is down to 31 even. Height was 38.5." Which is still 50% for weight, but we don't want him losing weight, even with room to spare. We were ok with him holding steady because he was a chunk, but now he has lost. I am very obnoxious with counting the calories in his blend and have a food scale that tells me how many calories are in certain foods to make sure I am right and not just guesing and then possibly under guessing how many calories are in his blends.

We have transitioned from full J feeds to small blended diet boluses and hooked up at night, to larger BD boluses. Our calorie goal was 1,400 a day, which isn't cutting it anymore. 1,400 is a crazy number for a 2 year old. On a BD we have always had to go higher than on just formula alone. That's a ton of calories though. Granted Noah is super active and always going, it just seems at that many calories he should be gaining something. We also have to factor in the he was doing 2-3 day food trails & his calories were slashed in half, obviously that doesn't help in weight gain. I remember at one point, Noah was about 8 months old he was gaining fast on a ridiculously low number of calories per day, but he wasn't active at all and he was only on Neocate & Duocal. Now it's just the opposite.

Noah still has a lot of trouble with volume. He can do ok with 6oz boluses, but anything after that he just vomits up. Plus his digestions is a bit wonky at times. Some days he does great, others, the food just sits and sits. He also can't eat every 3 hrs, his food won't digest fast enough to do this. So,then we can't get in the right number of calories or he has to be hooked up to his formula and pump.

Noah was also cleared for dairy, which was something he was allergic/intolerance to at one point. We have added some back in slowly and he is back to being really mucousy. I am talking vomiting up his entire feed, even though he has a nissen, or he just vomits all day, multiple times, 5-8 times. Sucks. So, we are going to cut that back out and see if that improves. When he is congested he has a really tough time handling feeds. He starts coughing which almost always leads to vomit. He is not sick, he is happy, playing, so we are going to nix milk and see if it helps any.

Our new goal is to go to 1,600 calories a day. That's more than mine! We are going to be doing half BD and the other half on his pump, bc like I said, volume is our enemy and I can't make his blend the right amount of calories and volume at this point. If we add more oil, which is an easy way to get calories up without adding much volume, it's too fatty and he has a hard time digesting that. Our other goal is to slowly up his BD boluses and hopefully wean off the pump. This can take ages though. 5-10mls, not even half an oz, can be j-u-s-t too much ....its crazy. At one point I would love to be able to push 8 oz and not think twice....though that seems like a long time down the road.

Boys Chiropractor Visit and The X Ray Fiasco

So, I have been doing some research and decided to take the boys to the chiropractor. There are so many health benefits of taking young children, so I thought what they heck...and did it today.

 The office was so nice and the staff was amazing with the boys. Couldn't have asked for nicer people. We met with the chiro and he examines their backs and necks. Then he wanted Noah to have an X Ray of his back so he can see things better. So, I take Noah into the X Ray room, {I am sure there is a proper name for this.} and that is when it becomes a nightmare. Noah starts crying and running out of the room saying NO NO NO. I thought ok round 2, same results. Sigh....he kept saying NO tube, No Tube....he thought he was getting a tube change, which he HATES...he is literally shaking and crying, can't catch his breath.... it was ugly. We took a long break, tried again, same result....finally he stood there for about 3.5 seconds and the staff took the pic and we prayed for the best. LUCKILY it was great! Thank God.

We re-met with the Chiro and he said Brock was a little out of place in his lower back, but nothing major. Noah on the other hand was a hot mess.....am I shocked, not at all....what else do I expect with my lil man?? His neck is all wonky--his upper back is a huge mess. The Chiro said from coughing and gagging, retching, can cause it...then his hips were out of line. Since Noah decided to loose his mind on the x ray and it took ages, over an hr, they dr didn't have time to actually do any adjusting on any kid. We have an appt on Friday and I am hoping it goes smoother....we are going to do a lot of talking about it and hoping, wishing, praying, he likes it......

New Pediatrician Visit

So, today we had an appointment with a new Ped. We have been having some issues with their old pediatrician so it was time to move on. We found her through Noah's dietician and I am so happy that we went. She was amazing. The boys seemed to like her a lot. Noah use to scream and cry when getting his ears checked, this time he just sat there and talked to her. Huge for him. Her staff was super nice and there was zero waiting for her to come in. We have waited over 35 for his old ped.


One thing I really liked was she weighed Brock, but didn't plot it on that dreaded chart. She said he was perfect and was developing at a great rate. I hate how much the old ped was, " he is kinda low on the %tile." Their new Ped, Dr White, was all, "look at him, he's crawling and pulling up, standing alone at times, babbling....I don't need a %tile to tell me anything, he says it all." LOVE it. I love how she looks at him and not the damn chart. She did do a blood draw to check his levels and I was thinking Brock was going to scream, nope, he just sat there while they did it. Didn't cry, didn't pull away, nothing. I was impressed. I have strong kids! ;)


She listened and took notes during Noah's history, which took a good 20 mins . She wants to see his medical records from Cincinnati Children's. I am not expecting her to find the missing clue everyone else has, but a pair of fresh eyes will be nice.


I never once felt rush or pressured into anything. She feels parents know the kids best and let them decided....of course if she thinks otherwise she will tell you, but it's your choice what you want your child to have or not have. It's nice that she lets you choose what is best vs. going exactly by the book. She also doesn't dull out antibiotics unless they truly need them. I like that. She is into natural healing vs meds. We don't go back until Brock is 1 and Noah is 3!


All in all, it is way worth a 35 minute drive to get to her. I will recommend her to everyone!