walker and GI issues...

Camden still hasnt walked since July 10ish. I just knew he'd take off, but he hasn't by anymeans. His PT brought him in a walker the other day to see if that will encourage him. He is getting good at it, but doesn't do it continuously, just when he feels like it or wants attention. =o) He did better than we thought though. All his therapists think he is extremely stubborn....

For about a month now he has went back to retching and gagging. A LOT. Mostly during feeds, but also strangely when he is trying to poop! :s When he does this it usually means reherniation of the diaphragm, or like last time it was when we found out he was extremely allergic to milk. Or his nissen unraveling? dunno.... SO, Monday I took him in for an Xray. Diaphragm looks ok. Great! =o) So, we went for an upper GI the other day and havent had a call back on those results yet. If that looks ok too, I dont know what to think. We switched to soy a few mths ago, so he could have developed an allergy to that, but that would really STINK. If upper GI looks ok, I'll take all soy out and try that. I can't stand to watch him retch and dry heave everyday. The little trooper just gets through it then goes back to his play. In the mean time we have slowed his feeds, and have been venting him a lot more. Lots of steps back in the eating area, and with all the icky feeling, he hardly wanting to lick now. =o(
Ready to get to the bottom of it and make him feel better. I hate not knowing....and if things look "ok", and it isnt soy ( which I highly doubt anyway) and this is just what his body is doing right now, I dont know what to do. It is hard to even keep an 18 mth old hooked to a feeding pump for any amount of time, so I cant imagine longer. I am just babbling thoughts tonight as I post... ;)
Other than that.....he is doing great! =o)

Glad I got the walking on video...

...because that is the one and only time he did it! He has had PT and wouldn't hardly stand. Im glad I had the video to show OT and PT or they wouldve never believed me. ;o) He will not do it for us either. I even tried to take him back to Nichole's carpet...nope. He is a stink pot. He refuses, falls to the ground, laughs and take off doing his chimp crawl.
His PT did introduce him to a tricycle this week. He was checking that thing out and very concerned that it would fall over. He did really well. Hilarious when she wrapped his feet to the pedals. But he was ok with it after a few minutes. As you can see above, we are still using the protective and it has prevented more head injuries! We love that thing...

Still not saying anything but making more sounds, and almost says "uh oh" sounds more like "uh uh"
We started introducing dusting foods, like ground up pretzels. He aint having that either. He still is licking, but not wanting it IN his mouth and this month it has been a bit worse. He likes to lick pretzels but hates it "dusty". He had a wet cough that started around the 4th, and it is lingering. We were quite happy there was no O2 needed, praise the Lord, but when he coughs it makes the reflux want to come up more, which causes him to retch. Having the nissin surgery which doesnt allow puke to come up makes it worse. ( yet he had to have it to keep food down) Another vicious cycle, and a little set back in the eating department. So that is why I believe he is refusing orally even more. But we are ok with it. We are not in any hurry. Thank God for gtubes. ;o)

We are trying to get on a cloth diaper kick. We have a few so far and they are so cute. I have to learn a few more things about it before we are all cloth. Daddy doesnt seem very fond of it....but I am thinking he'll adapt. =0p

really big "steps" tonight....

....Decided he was going to learn to walk before standing! We were at the Saphore's house tonight and he always loves the soft carpet and feels more confident on it. We worked with him for a few minutes, then he got the confidence and went for it! I am so proud!!

ENT visit and the fourth

standing for a few seconds =)

Oldest brother, and daddy...

Camden with his Nana and Nanny (great grandma)


Last year Camden was on a vent and had only been home from the NICU for 2 mths. He obviously did not go out for the 4th of July. This year he did. He danced with his flag and watched fireworks with out freaking out. He is so funny and he loved his "first" Independence Day celebration. Thank you, Lord for our freedom!
He even had a little touch of a tummy bug, but that didn't seem to get him down too much. He missed a few feeds and I am sure lost a little weight, so we will be starting the new diet tomorrow. I didn't want to add the extra oil when his tummy wasnt all right.


We saw the ENT, Dr M the other day and he says Camden is looking great and we do not have to see him for another 3 months. That is SOOO WEIRD. Camden doesn't have to go to the ENT for another THREE months!? We go see the pulm tomorrow and we will see when we have to go back for the next follow up. I am thinking it is really calming down with all the appointments and it would be nice if we just had to go to the hospital once every month or so...we shall see.

Busy June

Camden in his frog bathing suit..


Camden has been doing lots of swimming this June and thinks he can actually swim. He is now trying to jump out of my arms. Swimming in dad or mom's arms isn't good enough. If he'd never had lung/airway issues, I'd so let him go so he would know that he couldn't swim, but ofcourse that isn't happening. So now when we go in the pool he fights me the whole time to get out of my arms. No fear!

Still no oxygen needed. I am believing we are done with that!

No food by mouth, but still licking EVERYTHING. He loves licking pretzel rods and prefers salty, but will lick a cookie too. He is taking sips of our drinks here and there, but as soon as you hand him a sippy cup or spoon he pitches a fit. During dinner he is in his high chair, we sprinkle some food on his tray, give him a real big fork, (wants the real deal) and then he forks the food. No eating it, just forking. =) Still, this is all huge improvements for Camden.

It has been 3 weeks since we increased his feeds, and I believe he has started to slowly gain again. I havent weighed him in 2 weeks, but I am thinking he is now a little over 22 pounds. He is still on the same baby food blenderized diet.

Still no words besides" momma", but is making different noises. His OT told me that she has noticed more sounds since last week. He is yelling at us too. He is also scribbling on my walls. I never thought he'd be doing that this soon and I am so proud. =0)

He is signing more too. Learns it once and it sticks. He wants to know the signs for everything. He looks so adorable when he signs "day." And every animal is still "dog" except cats.

Not walking, but close. We have a new PT (love her) and she is going to give him another week or two to see about a walker. She says he'll probably just need it a few weeks to boost his confidence, and then she thinks he'll take off. As fearless he is, he isnt in the walking department, but it wont be long.

We found a new organization in the Philippines that helps trach babies lacking supplies to donate all our extras to. I am so thrilled it will be needed and used. the other extras that weren't in the packaging and couldnt be shared are also being put to good use. This is my Peanut's dog pictured above, Fred, who apparently had to have an emergency trach put in last night. At least his breathing is being monitored by the lego apnea monitor.

Today, I am thanking God for Camden's growth and for his health. I was able to talk with another mom today whose baby was trached yesterday. =( Thinking back and explaining things to her brought me back to those days and I am amazed at how far Camden has come. I thought about how far he will be this time next year, and he gave that mom hope for how much her baby will progress in a year. She really helped her seeing him up and moving and trach free!

The beach, sipping, and other updates...

Camden has been doing a lot this June...
He will be 18 months on the 22nd!

First praise is that since the day his trach was removed, he has NOT needed any oxygen!

He has been to the beach twice since trach removal, and loves it. Has no fear of the water. Also signs "water" when he sees pools and gets excited to take a swim with daddy.

We are still cruising, but working on getting the courage to walk. I am thinking it is just a few weeks away and he will be walking.

No new words, still just says "momma". When you bug him to say anything else he says "momma". He does "hum" "uh oh"..

He is signing approximately 15 -20 words. He also signs "dog" for every animal. The gorilla at the zoo was a dog, and so were the birds at the beach. Oh, and while reading Noah's ark, all those animals were dogs too.

He is still hanging at 21 pounds which has put him in down in the 3rd percentile for weight (30th in height) so we have increased his feeds. He is now getting 4 syringe feeds of 195 mls each ( still blenderized diet of fruits, veggies, and meats) and is tolerating them wonderfully!! The milk free diet was definitely the key!! He is still getting a night feed on the feeding pump, but we have cut back on that. My goal is to cut that out completely and add that to the day feeds as he continues to tolerate more food at once.
As you know he is now licking, and now wants to try everything we eat, depending on his mood. If he is in a bad mood, food makes him even more angry, but most of the time he wants to lick.
He will actually open his mouth and almost bite my finger off for spaghetti sauce.
He will now sip sweet tea out of a cup. Yea!!! Still no official calories by mouth but I am thanking the Lord for licks, sips, and tastes.

Has 6 teeth all the way in and at the moment he has cherry red gums and is cutting like 6 more, poor thing.

Still wearing his "ThudGuard" toddler helmet with the over paranoid mom. I am thinking after he has been walking for a month I may let it go? = o)

Still getting occupational therapy once a week, pulmonolgist around every 6 weeks, nutritionist around every 6 weeks, surgeon every few mths. We have a follow up with ENT July 1st, then not sure when we'll have to go back. We do not have to see the cardiologist for 1 whole year. Our next step in to look into an intense feeding clinic.

This has been an exciting month for the Roells! =)

It really happened.....