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.