Tuesday, June 29, 2010

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!

Tuesday, June 15, 2010

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! =)