Few Camden update =)

First of all, the good news with physical therapy. Camden's PT said that although he is behind physically she feels like she is going to cut back her visit once a month! He is progressing so fast. If after a few months he doesnt seem to be making progress she will start coming more but he seems to be taking off. His walk is a bit Frankensteinish, but that is from laying so long. His muscles in his legs have to stretch in areas, shorten in others, but the PT said that is totally normal (although I do love his walk =p) He is hardly crawling at all anymore, I am still beyond excited over his walking. Praise God my baby is walking...

I am still trying to figure out the cause of the retching. He has been off the soy formula for about a week now and the retching has left....until this morning. ugh! I decided to take out soy to see if he had developed an allergy to it since he has those tendencies, being allergic to milk. So after a week of doing great, this morning he retched. I am still thinking soy is a problem, although being allergic to soy and milk is going to stink. I am going to have more blood work done to rule it out. I think the retching this morning was just normal Camden retching. I dont know! If the results come back ok, we'll pretty much know it is "just him" =(

He is signing a lot and still not saying anymore words. We now have speech therapy coming to the house once a week, and still continue to have the OT every Tues. She has been working with him on food, so he has despised her the last few visits. He did great today, licking chips until a piece broke off in his mouth and he starting gagging. He recovered well, then eventually threw the chip very rudely right after she left. Today he decided to lick my gum and loved it. ( I know, gross, but when your kid doesnt eat you dont care) So I need spearmint flavors, salty, chip textured foods that don't crumble. Anyone know where I can get these, let me know.... =)

This past weekend we raised a little awareness for CDH. We were trying to win the APX contest that was offering 100,000 for first place with the foundations that received the most votes off of facebook. We went out in front of a mall and gave people ribbons, and made them promise to go home and vote for us. =) Not sure who really did it, but at least they got to learn what CDH was. I am pleased to say CHERUBS won 2nd place, the 30,000 reward!

Officially WALKING!!

I waited 24 hrs to make sure...but it is official. He has decided to walk. He does it a lot, like a little turtle. So precious! I still cant get over it, and kept making him do it today. =0)
Gagging and retching is still bad. Actually seems to be having more bad days than good. With all the research I have been doing online, I am realizing that is seems to be caused from the nissen wrap he had. Basically there is nothing that can be done, and with time hopefully things will change. I am finding more and more similar stories about other kids with nissens having the same symptoms. And it doesnt have to happening right after surgery, it can happen a long time later.
In the meantime we did meet the new GI doc. He is ruling out parasites (dont u love getting poo samples?) and I have Camden back on a probiotic, but I know that isnt the problem. I could be wrong....but I just think this is (unfortunately) how Camden's body is working right now.

BUT.....he is walking!!!!!!

Another test...

Going in for another upper GI this Thurs, this time a bowl follow through, somthin or another to see more.
Then we will start to see a GI Dr, which I knew was coming, I was just was trying to go for "less" appointments, but it only lasted so long. ;o)
His upper GI from last week shows no problems, nissen intact. Thank God for that, but still not sure what causes all the retching.
Until then...

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.