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.