It's been a long two years and you have been such a fighter.......
Camden turned two last Saturday!! He had a huge celebration, and Barney himself showed up. =) At first Camden was a little freaked, but it didn't take long before he was dancing with Barney and was very sad when he had to go! The party was perfect and I was overjoyed with all who came to celebrate my babies life.
Camden has TAKEN OFF in the past few weeks. He had his other testing done (esophagram) and everything looked fine, so there is NO restricted esophagus like his momma, (thank God) and he hasn't had any choking in the past 5 days. He is begging for food, mainly rice, and today he has consumed over 5 animal crackers. Honestly I feel like I am in a dream and have waited for these days for a long time. I have decided not to tube feed him a lot through the day so he can feel hunger and he seems to somewhat be associating it with food. He will sit in his highchair and try and eat rice for an hour. I am sitting with him and encouraging him and praising him. He loves the praise and wants us to clap. His siblings have been WONDERFUL. They are the best speech therapists!
**sorry so many details, but this is his "baby book" ;o)
Physically he is doing great. I haven't been connected with any therapists since we moved due to everything going on, but plan on getting him evaluated. He seems to be right on target physically. I have watched other kids his age and notice a few differences but nothing that he won't be doing soon. ex: sliding out of a chair or climbing stairs. He can do it, just not as fast.
Speech is starting to get better but yes, way behind, which is to be expected.
Bubbas ( brother )
mmmm (yum ;op)
can sometimes do a P sound and did a short A sound last night. In time....
He is signing:
I love you
He knows where his nose, eyes, hair, head, mouth, tongue, teeth, feet, and bellybutton are.
He WILLINGLY let me brush his teeth for the first time this week. =0)
Weighing around 24 pounds and getting back to be on the skinny side, but we are focusing more on learning to eat, not gaining weight. He is still on a continuous feed of formula for 8 hours through the night.
We continue to get an RSV shot each month through the winter. He has had one cold this winter and did fine. He still is on an apnea monitor and has a pulse ox for stand by. Mommy is going to have a difficult time handing them back to the medical supply company. No O2 needed since trach was taken out. Still off albuterol but I did give one treatment when he was sick few mths ago.
Like I said....he is taking off!! I am so thankful to God to be able to watch him ENJOY life like he does.
Tuesday, January 18, 2011
We headed to G-ville today to have upper GI and then see the gastro. Camden still hates upper GIs just as much as he did before. He let us know this, poor guy. Nissin looks good, no reflux.
So then we headed to GI to address his oral aversion etc. Well, that is why we had the appointment in the first place, but let me back up....
Camden has decided to really take an interest in eating and drinking. He will eat rice now and drink out of an Elmo juice box. OK, I am so overjoyed and beyond excited AND so happy to be seeing this.....but, he is having some swallowing difficulties. Ex: He ate a tiny piece of ham one day then the next day he ate a few tablespoons of rice. Then he gagged and hocked up all the rice AND the ham from day before. This has happened a few times so in my opinion things arent making their little way down the esophagus. So Dr doesnt want to pursue eating ( wants us to be gentle) until we take Camden in for ANOTHER upper GI next week. This time with an NG tube to see the throat since he wont do the barium orally. Today we just did it through his gtube. We couldnt do it today because he had already started to eat his new addiction. (rice)
Let me add: Dr thinks this is NOT CDH related because I have a restricted esophagus, esopagitis, hiatal hernia etc blah blah blah so he believes this could be hereditary. UGH! Let me add to the problems =( But we wont know anything for sure until next week.
On a good note.....we are having a bday party for Camden this Saturday. Mommy has invited everybody and it is gonna be a good old time of celebrating Camden! I was too nervous to have a big party last year, so Im braving the germs this year. =) It is gonna be great!
Wednesday, January 5, 2011
Christmas was wonderful and we got through part of the winter without being sick...until New Years. Funny thing everyone seems to be doing better than mommy. Thankfully, it is just a bad cold.
Camden battled it for about a week and did pretty well. Ran fever for a day or so, battled the snot, and coughing here and there, but he seems to be ok!
As for the retching, this feeding plan has continued to be perfect. No retching. NONE.
He has received 2 RSV shots so far, and is due for one soon I'm sure. My insurance has surprisingly been great so far this year! One less little stress to deal with. Those are nice little surprises.
He has been working on the "N" and "D"sounds and just about has them down. So now he can do, "B", "M", "D", and "N"
So words are still few but we have momma, more, bubba, uh oh, mo, (no), nana, and finally dadda! Still has a hard time with nana and dadda, but you can definitely tell what he is saying!
I finally made a video for Camden. If you get a few minutes you can check it out. I can't believe he will be two this month.