Caedmon is 10 months

I am in denial that in 2 short months this little guy is going to be a year old. The first year goes by far too fast. Here is a little about Caedmon at 10 months old:

• Weighs 17 lbs 6 oz (9%)-17 lbs 11 oz (11%) 2 different scales 2 days apart, not sure which is more accurate 
• 30.25 in long (94%)
• Wears size 6-12 month clothing, size 9 month, size 12 month, and some size 12-18 month (in one piece items). We recently tried on shorts from last summer and size 3-6 month shorts fit with room to spare. He is super thin, so clothes that are long enough tend to be quite loose.
• Size 2 diapers still
• Breastfeeding and doing elecare formula (going to attempt milk and soy when he's closer to a year to see if he's outgrown his intolerance). The dietician has us on a pretty strict schedule to try and get Caedmon the calories he needs without making him too uncomfortable. We feed around 8, 12, 4, and 8. He breastfeeds first (only takes 1-1 1/2 oz) then takes 4 oz of elecare. Twice a day he is taking puréed food 20-30 minutes after his milk. Sometimes he will take a full pouch and other times only half a pouch before he starts to show signs of discomfort. We miss being able to feed him real solids, but are backing off until we get his digestive issues figured out.
• On 3.5ml of omeprezole twice a day for reflux and 3 tsp of miralax a day
• Just started 30 days of erythromycin (1 ml 3 times a day) for mild gastroparesis.
• Unfortunately the failure to thrive diagnosis is backndue to his issues with eating and gaining 
• Seeing PT every other week to follow some mild left side weakness and slight neck weakness. I don't think we will be going much longer since it's so mild 
• Sleeping on a reflux wedge and tucker sling again. Sometimes he sleeps 7 hours straight before waking up and other nights he fussed nearly all night even if he's being held. The wedge and sling do help a lot. We have noticed that if we feed him too much puréed food at dinner or feed it too late that he will be really uncomfortable and fuss most of the night. Getting him to sleep every night is a challenge. He will usually only settle for mom and even then will toss and turn.
• He still isn't too fond of car rides. He really doesn't do well if we put him in his car seat too soon after eating. He will scream the whole ride if we do.
• Caedmon is up to walking 6 steps independently and can sometimes squat up and down without holding onto anything 
• He loves to clap for himself while he walks
• Just learned how to give a high five 
• If we ask him if he wants to eat he will start heading for his high chair 
• He says mama and dada clearly. He's been making a baba sound a lot when he sees his brothers.
• Caedmon loves to yell, whisper, and growl 
• He is extremely fast crawling and is into everything. He opens drawers and cabinets and is trying to climb things
• He loves when I put music on my phone and it's one of my tricks that sometimes works to keep him still for a diaper change.
• He learned to blow raspberries this month 
• He loves showers and gets mad if we take showers without him
• At mom/baby group he tries to grab toys back when another baby takes them. He seems to like being around the other babies
• He likes to "help" with everything (dishwasher, laundry, homework, etc)
• He still loves to be carried in the ergo
• He had 2 teeth and a 3rd that has broken through the gums
• He loves to play peekaboo (does it all by himself) and chase
• He loves to get wild and silly

The feeding saga continues

We have continued to have a difficult journey with Caedmon's feeding. After the ng tube was placed and Caedmon was unable to tolerate even the smallest of feeds through it, he was scheduled for an endoscopy and nd tube (nasoduodenal) placed.  Caedmon did ok leading up to the procedure, even though he was unable to eat and the dr was late (he didn't realize it was on his schedule). Of course he woke up angry from anesthesia just like Graesen did.  Unfortunately, they were unable to get the tube in place during the procedure, so we had to go to radiology to have it placed once Caedmon was awake.  He was strapped in and angry.  He screamed so hard and was pretty junky, so his O2 kept dropping into the 70s and 80s.  The nurse had to suction him a couple of times and give him O2.
Once we got home a dietician came with an iv pole and pump.  Since nd tubes bypass the stomach the feeds have to be given very slowly with a pump.  We were supposed to give 12 hour night feeds in addition to breastfeeding and solids during the day.  Caedmon slept horribly when we did night feeds.  His belly did not seem to happy with doubling his intake so quickly and he seemed to want to decrease his other foods and milk.  He also kept pulling out his tube.  The first week we were in radiology 3 times (nd tubes can only be placed at the hospital with an xray). It was horrible and traumatic for Caedmon.  The last time he pulled it out was a Saturday.  I was dreading taking him in, because on weekends you have to go through the er and the available staff are less experienced in placing tubes.  I decided to try again to see if Caedmon would take a little bit of formula so we could hold off.  For some reason, after months of refusal, he finally accepted formula.  We were able to work with the dietician to create an eating plan for Caedmon without a tube.
During this time Caedmon also visited a speech therapist.  She said Caedmon had some mild oral motor weakness and dysphasia.  She requested we see his ent to check for any anatomical issue and get a swallow study done.
We visited the ent at the beginning of February.  The ent did a little scope while there and we were all shocked by what he saw.  When he touched the top of Caedmon's esophagus, instead of seeing normal peristalsis, he saw disorganized firing of the muscles.  He said that it explained a lot of Caedmon's symptoms. He also said that typically when he sees that sort of thing it is due to a neurological issue or a genetic condition.  The pediatrician wrote us a referral to neurology and that appointment is later this month.
On Valentine's Day Caedmon had his swallow study.  The study showed that liquids went down ok with some reflux, but solids struggled to move down his esophagus.  Solids stuck there and even moved up, which probably is quite uncomfortable for him.  We were advised to back off of solids and do more liquids and pureed foods in order to keep Caedmon more comfortable.  We were also advised to get a gastric emptying scan done and a PT and OT evaluation to make sure there wasn't anything else going on (or any muscle issues from the way Caedmon holds his body when in pain).
The PT saw some mild left leg and front of neck weakness, so Caedmon is going every other week for monitoring.  I don't think we will be going very long.  OT went well and Caedmon won't be needing OT.
The gastric emptying scan was last week.  Caedmon had to stay strapped down for an hour.  Although he cried at the beginning and end, he was pretty relaxed and happy for at least half of the time.  The test showed mild gastroparesis (delayed gastric emptying) and some reflux.  Caedmon will be starting a 30 day round of erythromycin in hopes that it will speed up his digestive system (he did this around 4 months as well).
We feel awful that Caedmon has had to go through so much.  We worry a lot about him, especially as he gets new/worsening symptoms.  Right now, with the increase in formula, he's not comfortable taking as much food.  If we feed him too much at dinner or give him solids too close to bed, he wakes up all night and tosses/turns.  We have him back on a reflux wedge and sling, which is helping some, but we still have rough nights.  The last couple weeks Caedmon has started to tilt his head back while eating solids.  We worry that this is a sign that he's uncomfortable and is attempting to elongate his esophagus.  We are just so anxious to get him comfortable and eating normally.