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! 

Potty Training.....

Oh man! Where to start.

It's hard to potty train a tubie. You can't bribe him with candy, he hates stickers, {sensory crap.} I'd go broke buying him toys each time, so what do we do? We cheer! Annoyingly. He LOVES it. He pees/poops, we clap and say "Good boy, That's awesome, Your so big!" Something like that. He gets this big cheesy grin, like yep I rock, I do. ;)

We have been working on potty training for a while now.  He is almost 2.5 yrs old. He has never really gotten it until recently. I have to remind him to 'tinkle,' but he gets right on there and does it. {We rock a lil kid potty in our living room. Don't judge, lol.}

There have been times he will randomly go on his own without me reminding him. Though last night he was sitting on Albert watching Nina and the Goodnight Show, {Nina is one happy chic I tell ya.} and he was so engrossed in Nina, he peed all over Albert. It was quite funny, though Albert didn't find it funny. Noah said and I am quoting here, "Oh crap." Man, he cracks me up. It happens, what can I say. Here's the kick in the ass, he will not go if he has on underwear. Nope. He pees right in them. So what's a girl to do? We let him run around pantless..unless we go somewhere of course. We have to start working on wearing underwear, but he is dry almost most of the day, with an accident here or there, but for the past 2 days good, up until the we pee on dad part last night.We also have to move the potty to the bathroom.

Things to work on, but he is doing really well. I thought he would never be potty trained. He is doing ok. Pretty proud of my lil man. He currently just finished going on his own and I wasn't paying attention and he started dancing and clapping.....his own lil cheering team. We went to flush it and now he is dancing saying "bye poop, bye...see ya."

Love this kid. <3 If anyone has tips advice, please share!