CDH Awareness Day

March 31st is CDH Awareness Day. Camden is sportin' his new shirt we ordered for him and he has the major giggles today. =)
This video below is from the CDH Cherubs website for all cdh survivors and babies that have already went to be with Jesus. On this video, there are 700 pictures of babies, children, even some adults that have had their lives changed due to a diaphragmatic hernia. Camden's pic is even towards the end. =) The founder of the cherubs website is a precious lady, Mrs Dawn Torrence Williamson who lost her angel to CDH. She has dedicated much of her life to continue to help others that struggle with the affects of CDH or the loss of a CDH child. The beginning of the video shares some facts about CDH... video

Louder and faster! =)

Camden is getting around everywhere. His crawl is quite funny, but it works and it is getting faster and faster. He loves to pull up on the couch and cruise.

Last night I had to go out for a bit and my son called me to tell me Camden said "momma". I have been trying to get him to say it FOREVER. Of course when I got home he was in silent mode again. He is off and on making sounds, depending on his mood, although he is wearing the PMV (talking valve) all day unless he is sleeping. He is opening his mouth more which is huge and started fake "ha ha" laughing the other night. I LOVE to hear him.....love it. Never gets old. I can't wait for him to wake up so I can put his PMV on. =) And actually hearing his laugh is amazing. So, obviously with him tolerating the PMV ( remember he can breathe in through it, but he has to exhale out of his mouth) he is doing well in the breathing department. Hasnt neede o2 during the day but he does at night because of the Jon Bunn ( mask the moisturizes his trach) has always caused him to require a little oxygen.

This week he has taken 3 licks of milkshake and 5 licks of gravy so far. They were teeny tiny samples but he licked it and went back for more....then got mad and shaked his head NO. =) It is like he is so curious, gets the courage to taste, then sometimes gets nervous, or the taste gets overwhelming and he makes a sour face. Cant even imagine what he'd do over a lemon.....

Some of the pictures above are from his first zoo trip. He loved it!!

Thanking Jesus...

“My salvation and my honor depend on God ; he is my mighty rock, my refuge." Psalm 62:7

I was looking back at this time last year and Camden was recovering from his trach surgery. It is almost hard to believe he has been trached for a year and almost home for a year. I remember praying for time to go by quickly. It has. It is 1am and I am hanging out in Camden's room waiting on daddy's 3am shift. =)

I heard of another CDH baby passing away today and my heart aches for them. I was following the blog while the mom was pregnant and was sad to hear that the baby didn't make it. Please say a prayer for A.J.'s family tonight.....

Good day

Surgery went well, Camden did great. They didn't wheel him away in a crib this time, so the hardest part was giving him to a nurse to take back to the OR. He was losing it, looking at me like, "Come back!" =( He freaks with nurses and Drs. Even getting his vitals is a nightmare....But, all is good and his airways have improved, thankyou, Lord. So HOPEFULLY we can work on getting that trach out. Go back to see the ENT in a month....

Ear tubes tomorrow

we have to be there at 615, surgery at 7am. It should be quick and I am not expecting to stay too long if all goes well. Then hopefully Camden will be free of ear pain. =)

Shots and O2

Camden has been on O2 at nights for a while, but I couldnt get him off tonight. I am not worried...I'm realizing this is just Camden. He doesnt seem sick, sounds clear, and is in good spirits, just needs oxygen. ;)
Dr. C came and gave him 2 shots. He was ticked but got over it very fast. poor baby. =(
He is still cruising, but was a bit frustrated trying to get around attached to o2 tubing. Made me think back to ventilator days and how thankful I am that he doesnt need that. That would be super hard to crawl around with. Daddy and I will take shifts tonight. We seem to have a few more nights without a nurse this month. I have first shift, and I am watching the little die hard now. He likes to be silly and tease me through the crib bars, rolls all around off the boppy and makes me have to keep scooting him up. ( we use the boppy up-side-down to try to keep him up on the elevated crib) He also just ruined another pulse ox sensor by yanking on it, and now he is kicking his crib bars. Stinker!

Rocking on all fours one morning...then later that day Im....

CRAWLING!!!! =) I love getting into things! My family is WAY excited today, and my OT is going to be shocked when she comes Thursday. =)

Just more updates =)

Just thought I'd share some updates.
Camden is now a little over 13 mths.

Camden has been wearing his PMV for the past 4 or 5 days and it has been great to hear some sounds today. We aren't positive if he said it, but we all heard him say what sounded as a raspy, "HI". =) He doesn't like to open that mouth, and actually has to be in the mood to want to impress to do it. This video shows what he does and shows how he gags when he does open his mouth sometimes. I am thinking the trach tickles his throat when he opens his mouth. It is doing something to make him gag or cough.

Physically he is doing pretty good. The other day he pulled himself up in the playpen and is now a pro at it. No crawling, but I am thinking that isnt going to happen. That is what the PT is thinking too. He did great in his PT session today and opened his mouth lots for miss R. His left leg seems to still be very weak,(which is not helping him crawl as he flops into frog position) and he actually using his arms and right leg to pull himself into standing position. He will also slowly get to where he needs to be but scooting on his hinder, but he isn't all over the place yet.

Eating is a big NO. Nothing, not even a bottle. He cant tell me what hurts either, so that is hard too. B/T his throat, ears, and stomach you never know if something is hurting him making him. Yesterday I tried a speck of baby food on a spoon and as soon as it hit his mouth he lost it and tried to throw up three times in a row. (remember he cant throw up due to a surgery he had for reflux) I have never seen him gag that hard. I really feel so discouraged with the eating situation and am trying to accept that it is going to be a long road.

There you go! Other than the Camden "norm" we are enjoying him so. He is in love with his siblings and actually gets a bit depressed if they are all off with daddy. I have to take him in each room and show them that they are gone. My kids are also so so wonderful with him. They now all suction if I am in need. (which isn't a lot because Im a bit controlling ;p) But they can do it. If I am driving, they have to and that is a blessing to have them being my little nurses in the back seat. They still fight over him too....drives me nuts at times, but at the same time I am so grateful that Camden has wonderful, caring, siblings. He will be well taken care of! =)

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