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.
Thursday, December 23, 2010
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.
Thursday, October 7, 2010
Nice shoes
So Spencer's feet are progressing along nicely. He had his brace check today, and everything looked great. Having 900 dollar shoes sure gets a baby a lot of attention. Today someone asked us where we got his shoes at because she thought they were awesome.
So we were at the hospital where we usually go to do feet stuff, but in a different part. When we were near the ortho department, Spencer kept staring at the dept giving it the nasiest look. Apparently he also gives the same look to his pt.
He doesn't shut up! Spencer babbles all the time. He'll be seven months old soon, and he is teething. He has been chewing on everything, thus slobbering on everything! He is 27 inches long and weighs 18 pounds. To think we never thought he would hit nine pounds! And he drank from a sippy cup yesterday! He's apparently not too good at it yet, but it's a start. It was the first time he was offered it!
So we were at the hospital where we usually go to do feet stuff, but in a different part. When we were near the ortho department, Spencer kept staring at the dept giving it the nasiest look. Apparently he also gives the same look to his pt.
He doesn't shut up! Spencer babbles all the time. He'll be seven months old soon, and he is teething. He has been chewing on everything, thus slobbering on everything! He is 27 inches long and weighs 18 pounds. To think we never thought he would hit nine pounds! And he drank from a sippy cup yesterday! He's apparently not too good at it yet, but it's a start. It was the first time he was offered it!
Friday, September 17, 2010
Braces and solids!
So Spencer got his braces today! He has the Ponseti Bar. He has been a little cranky, but he also switched formula yesterday to see if we can nip the reflux in the bud. Maybe little is an understatement, but I finally got him to go down.
So the brace itself is pretty cool. You can take the bar off to put him in high chairs and his exersaucer and such. We had no idea that it did that. We go back for a brace check in three weeks, so we'll see how long we need to do the bar for 23 hours a day. He said three months, but you never know.
Eating wise, Spencer has moved onto solids! We started giving him a bit of cereal to see what he would do. We met with our high risk team yesterday, and they said to not give him cereal because it's kind of gross. They gave us some tips on how to transition to solids and sippie cup. He still has to be fed every three hours, but we can do as much baby food as he's interested in. Twice a day seems good since we can get him once at home and once at daycare. He loved apricots (they fed him fruit first!) and he tried green beans and didn't hate them! As soon as he can take more than an ounce by sippy cup, we will re-evaluate.
So the brace itself is pretty cool. You can take the bar off to put him in high chairs and his exersaucer and such. We had no idea that it did that. We go back for a brace check in three weeks, so we'll see how long we need to do the bar for 23 hours a day. He said three months, but you never know.
Eating wise, Spencer has moved onto solids! We started giving him a bit of cereal to see what he would do. We met with our high risk team yesterday, and they said to not give him cereal because it's kind of gross. They gave us some tips on how to transition to solids and sippie cup. He still has to be fed every three hours, but we can do as much baby food as he's interested in. Twice a day seems good since we can get him once at home and once at daycare. He loved apricots (they fed him fruit first!) and he tried green beans and didn't hate them! As soon as he can take more than an ounce by sippy cup, we will re-evaluate.
Monday, September 6, 2010
Quick Update
Spencer had his tendon cut a week and a half ago. He was super crabby the first day, and then after that was back to his normal self. It only took four casts- with the exception of the cast that got cut off because he gained a pound over a weekend. He was fitted for his braces right before his surgery. We have another week and a half in this cast, and then we move onto Ponseti Braces! It will be so nice to give him a bath again.
Friday, August 20, 2010
Spencer the amazing weight gaining baby
We had an emergency cast removal on Monday. Spencer was sick last week and lost nearly a pound. He was casted on the last day of his illness. I noticed his cast was a little tight on Sunday night, but didn't think anything of it. We had an early morning appointment at his urologist and the doc said he was really swollen down there. Turns out his cast was way too tight and he had some swelling. They called over to ortho and Spencer got to have his cast soaked off in one of those pink little tubs. Luckily he's still tiny and fit. Turns out he gained his pound he lost back over the weekend.
We had to have his cast soaked off in the casting room. Everyone who walked by smiled at him, shocked to see a baby soaking in a tub. He didn't seem concerned when he heard the first saw that was kind of far away, but then the saw sound kept getting closer. He seemed mildy concerned. It was pretty adorable. One of the cast techs got me some fresh water and soap, and is was so awesome to be able to wash his leg properly for the first time in a month. Little acts of kindness...
He was recasted in nearly the same position. Apparently you can't position the foot too much too soon. Good news is that this was his last weekly cast. Technically it only took four casts. He gets his tendon cut next friday morning!
We had to have his cast soaked off in the casting room. Everyone who walked by smiled at him, shocked to see a baby soaking in a tub. He didn't seem concerned when he heard the first saw that was kind of far away, but then the saw sound kept getting closer. He seemed mildy concerned. It was pretty adorable. One of the cast techs got me some fresh water and soap, and is was so awesome to be able to wash his leg properly for the first time in a month. Little acts of kindness...
He was recasted in nearly the same position. Apparently you can't position the foot too much too soon. Good news is that this was his last weekly cast. Technically it only took four casts. He gets his tendon cut next friday morning!
Thursday, August 12, 2010
Here we go.
Sorry it took so long to post, dealing with an impending divorce. That's a whole another story.
Anyhow, Spencer has a couple of generic diagnostic terms. He has Pierre Robin Sequence and the Distal Arthgryposis diagnosis was confirmed. He'll hopefully outgrow the DA, but it could point to ODHO syndrome. They tested him for a couple of things, but are still scratching their heads. They said the more defects usually means more developmental delays, so we'll see. He's trying really had to sit up on his own, and is constantly smiling.
He gets his third cast tomorrow. I know I set this blog up to document his clubfoot treatments, but honestly, the casting has been pretty painless even with him being older. I'm just worried about when he has to go into the bar. He is a little cranky the first night of a new cast, but we give him some tylenol to help him rest, and he's good.
Anyhow, Spencer has a couple of generic diagnostic terms. He has Pierre Robin Sequence and the Distal Arthgryposis diagnosis was confirmed. He'll hopefully outgrow the DA, but it could point to ODHO syndrome. They tested him for a couple of things, but are still scratching their heads. They said the more defects usually means more developmental delays, so we'll see. He's trying really had to sit up on his own, and is constantly smiling.
He gets his third cast tomorrow. I know I set this blog up to document his clubfoot treatments, but honestly, the casting has been pretty painless even with him being older. I'm just worried about when he has to go into the bar. He is a little cranky the first night of a new cast, but we give him some tylenol to help him rest, and he's good.
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