It's Feeding Tube Awareness Week! Day one is a video campain:
http://www.youtube.com/watch?v=Zq6UTJt558Q
Sunday, February 6, 2011
Friday, January 28, 2011
So today we picked out Spencer's hearing aids. His hearing is way worst than I thought. It's fun yet depressing to figure out what he can hear and what he can't. It depresses me that I spent all that time talking his head off in the car, and he probably didn't hear any of it. His right ear is worst than his left, but his left is moderate hearing loss and the right is severe.
But anyhow....We picked out blue hearing aids with blue backs. He is getting digital ones since he is so little. We should have them in around three weeks.
But anyhow....We picked out blue hearing aids with blue backs. He is getting digital ones since he is so little. We should have them in around three weeks.
Tuesday, January 18, 2011
Hearing Aids
Well, the hearing test results were bad. We're getting hearing aids. Most like mild to moderate hearing loss. One test had mild as and result and the other severe. I mourned for a few minutes, and then realized that it's just one more thing- not the end of the world. Is it irony or coincidence that a musician's son has a hearing impairment?
I have to schedule an appointment with audiology for a hearing aid fitting. They say kids this small do really well. As for now, he seems to be pretty amazed at his toys. Dr. Schott said that the fluid in his ears was like putty.
I have to schedule an appointment with audiology for a hearing aid fitting. They say kids this small do really well. As for now, he seems to be pretty amazed at his toys. Dr. Schott said that the fluid in his ears was like putty.
Monday, January 17, 2011
Ignorance is Bliss.
Spencer had a tear duct surgery on the 13th, and he is having tubes put in his ears tomorrow. The last surgery was supposed to take twenty minutes, but took over an hour. It was called a lacrimal duct probing- meaning he had tubes placed in his tear ducts. Apparently they were a mess, which is what took so long, but he is now anatomically correct. Now hopefully it worked permanently. The ear tubes are being placed because he has narrow ear canals and has pretty much been on antibiotics for the majority of the past three months.
Good news for a change- he doesn't need glasses...yet! He is borderline!
He is making great gains in his physical development. He is starting to figure out sitting up a lot more. We're pretty optimistic he will be sitting independently by his first birthday- two months! He is rolling over- sometimes he needs a little help.
Yesterday I had him sitting in from of a toy that he hadn't played with in a couple of weeks. He attacked the toy and started turning all the nobs and stuff- something he hasn't done before. Every day this little boy does something that amazes me.
I'm super worried about his oxygen levels. He has been dropping significantly at night. ENT told us to put him back on O2 at night and told us to get him into the pulmonoligst asap. He has an appointment coming up soon- but I'm almost afraid to call to get the appointment sooner. I shouldn't be procrastinating, but isn't ignorance bliss? I'm convinced something is going on with his lungs or heart. I can't handle major surgery. Little operations here and there get me upset, but I deal. I can't deal with anything with "open" in the title.
Good news for a change- he doesn't need glasses...yet! He is borderline!
He is making great gains in his physical development. He is starting to figure out sitting up a lot more. We're pretty optimistic he will be sitting independently by his first birthday- two months! He is rolling over- sometimes he needs a little help.
Yesterday I had him sitting in from of a toy that he hadn't played with in a couple of weeks. He attacked the toy and started turning all the nobs and stuff- something he hasn't done before. Every day this little boy does something that amazes me.
I'm super worried about his oxygen levels. He has been dropping significantly at night. ENT told us to put him back on O2 at night and told us to get him into the pulmonoligst asap. He has an appointment coming up soon- but I'm almost afraid to call to get the appointment sooner. I shouldn't be procrastinating, but isn't ignorance bliss? I'm convinced something is going on with his lungs or heart. I can't handle major surgery. Little operations here and there get me upset, but I deal. I can't deal with anything with "open" in the title.
Monday, January 3, 2011
A Year in Review
So 2010 was the hardest year of my life. First we were told that we would have a baby that would surely die. Then we were told we wouldn't. Then Spencer came into the world and still had to struggle. My marriage ended. My husband was destroyed by all the stress of having a baby in the hospital for three months.
But I'm lucky to have Spencer. Hopefully my husband will come back to us from what he calls the grave.
I gained confidence that I never knew I had in me, while my husband retreated in himself. It's amazing how two people so in love can react completely differently about the same thing. I swam while he sank, and by the time I realized it it was too late.
But at least we can agree we have the most beautiful, perfect child that has ever existed.
But I'm lucky to have Spencer. Hopefully my husband will come back to us from what he calls the grave.
I gained confidence that I never knew I had in me, while my husband retreated in himself. It's amazing how two people so in love can react completely differently about the same thing. I swam while he sank, and by the time I realized it it was too late.
But at least we can agree we have the most beautiful, perfect child that has ever existed.
Thursday, December 23, 2010
Fighting Monsters with Rubber Swords
So last night was sleep study. Spencer's oxygen levels stayed in the low 90's, which is strange for him since he is usually in the mid 90's. He was pretty stuffed up, so it could be the root of it. I figure they'll probably want to do a repeat in 3 months. Either way it goes, I'm refusing to put him back on oxygen at night. He hates it. Now just to get all the glue out of his hair...
A bit of good news from yesterday. Spencer is allowed to be out of his braces for 6 hours a day! This is a huge improvement on his quality of life. Hopefully he will be able to catch up on the sitting up stuff and finish rolling over. He's getting pretty good at both, but hasn't mastered them yet.
His 9 month check up was on Tuesday. He is in the teens for both height and weight, and his head is down to 75th percentile. My crazy baby seems to be coming more and more proportional. He is starting to take a lot more by mouth. He ate 1/4th a jar of baby food the other day, and can eat a whole serving of yogurt melts. He can even eat the puffed cereal pretty well now, although a serving is like 73 pieces, which isn't happening anytime soon.
A bit of good news from yesterday. Spencer is allowed to be out of his braces for 6 hours a day! This is a huge improvement on his quality of life. Hopefully he will be able to catch up on the sitting up stuff and finish rolling over. He's getting pretty good at both, but hasn't mastered them yet.
His 9 month check up was on Tuesday. He is in the teens for both height and weight, and his head is down to 75th percentile. My crazy baby seems to be coming more and more proportional. He is starting to take a lot more by mouth. He ate 1/4th a jar of baby food the other day, and can eat a whole serving of yogurt melts. He can even eat the puffed cereal pretty well now, although a serving is like 73 pieces, which isn't happening anytime soon.
Saturday, November 20, 2010
Poop Braces
Spencer is progressing, a little slower than I like, but still it's a start. He has been sick more than healthy I think over the past couple months. He is struggling eating baby food, and enjoys using the sippy cup but doesn't "get" it. He's a happy little kid though.
We found out that he is pretty far sighted. He has to get put under to get his prescription though because of his PRS. They are going to figure out what's going on with his tear ducts and repair them if they can. If he doesn't have tear ducts at all, then they will have to do more extensive surgery later. The PRS also has made his ear canals really shallow, and will most likely have tubes put in when they can so they can repeat his hearing screen.
He has a hand doctor appointment on Monday. He is doing a lot better with his hands, but is still struggling. We're doing a consult to see if we need to do splints again. He also learned how to play his drums. We bought them based on recommendation from the Toys R Us Differently Abled Kids Guide. He loves them. He doesn't know it yet, but Santa is bringing him a Mozart Music Cube for Christmas.
He figured out he has feet. He lifts his feet up and looks at them when his braces are off. He still has to wear his braces for 23 hours a day. We go back in Dec where they will hopefully cut it down to 16 or 18 hours. He can also nearly roll over in his braces and is almost sitting up.
And this is gross. A couple of weeks ago Spence had a diaper blowout at daycare. I got a call that said, "Spencer is ok, but he had a diaper explosion and it got into his braces. We had to take them off and wash them so he can't wear them for a while." I giggled hysterically after I knew he was ok. He enjoyed his afternoon out of his braces while his shoes dried.
We found out that he is pretty far sighted. He has to get put under to get his prescription though because of his PRS. They are going to figure out what's going on with his tear ducts and repair them if they can. If he doesn't have tear ducts at all, then they will have to do more extensive surgery later. The PRS also has made his ear canals really shallow, and will most likely have tubes put in when they can so they can repeat his hearing screen.
He has a hand doctor appointment on Monday. He is doing a lot better with his hands, but is still struggling. We're doing a consult to see if we need to do splints again. He also learned how to play his drums. We bought them based on recommendation from the Toys R Us Differently Abled Kids Guide. He loves them. He doesn't know it yet, but Santa is bringing him a Mozart Music Cube for Christmas.
He figured out he has feet. He lifts his feet up and looks at them when his braces are off. He still has to wear his braces for 23 hours a day. We go back in Dec where they will hopefully cut it down to 16 or 18 hours. He can also nearly roll over in his braces and is almost sitting up.
And this is gross. A couple of weeks ago Spence had a diaper blowout at daycare. I got a call that said, "Spencer is ok, but he had a diaper explosion and it got into his braces. We had to take them off and wash them so he can't wear them for a while." I giggled hysterically after I knew he was ok. He enjoyed his afternoon out of his braces while his shoes dried.
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