Well, Atticus got his new leg braces (AFOs) yesterday. He wasn't a happy camper about them at first. He really didn't like being strapped into them, but once that part was over, he decided that they weren't so bad anymore. Later, once we were back at Grandma's house and he could play in the floor, Atticus decided that banging them together in the air over his head was actually pretty fun!
I wasn't really sure what to expect when we went to pick them up, but they're not so "Forrest Gump" as I thought they would be. They're made of a thick, smooth plastic (almost like a beach sand bucket, but thicker), with a large strap around the top of the brace and another smaller strap across his foot. They stop just under his knees, and look like a "L" running down the back and sides of his leg and foot. The right one is yellow, the left one is green-which will help me keep them straight, and they have footballs on the straps. (Go Packers!) It's pretty funny because the father and son that own the business are actually Detroit Lions fans, so the son joked about making them blue and silver instead! LOL! (For those of you that are non-football fans, the Packers and Lions are division rivals, and they just beat us a few weeks back!)
We also had to bump Atticus up to an infant's size 5 shoe to be able to have enough room to fit his foot and the brace in the shoe. Thankfully, that's just about the time that I started saving Gideon's (my 3 yr old son) old shoes, so we had a pair handy! (Isn't it lovely how God ALWAYS provides?) With his shoes on and his clothes on, you'd never even know he had on the leg braces. He's in his ExerSaucer as I write this (watching his NFL network, of course!), so we're already putting them to work. I can't wait until my little man can crawl, stand, and eventually (drum roll please...) walk!! I'll try to be better with my updates so everyone can keep up with his progress. And as always, Keep on prayin'!
Tuesday, December 21, 2010
Friday, December 10, 2010
Long overdue update
Forgive me. I know, I know. It's been over 2 months since my last post. So I'll make this one a long and detailed one so that I make sure that I catch up on all points about Atticus. First, I hope you notice the new pictures! We finally got some new family pictures done two days ago, and they couldn't have come out better! Everyone looked great! I love Atticus' curls, but they're starting to really get in the way of his nasal canula and hearing aids, so before they had to be cut; I wanted to make sure I got them in some pictures! :)
I can't believe Atticus is already 14 months old now! He's gotten so big! He's up to 24.5lbs and is about 32 inches long! We've had some recent doctor visits, and added some new ones, so I'll try to go through them one by one and give you all the details. First, for obvious reasons, is the cardiologist. Thankfully, Atticus' heart function and oxygen saturations have been great, so no concerns there for the moment. Dr Williams is still looking at that magical 30lbs mark as the milestone before beginning to talk about the Fontane. Other than that, there's been no real changes in that department.
The pulmonology visits are fairly infrequent, because it's just going to take time for Atticus' lungs to heal completely, and there's no use just sitting in a doctor's office when there's nothing new to report. We did manage to go from .5L down to .25L, so that's at least forward progress!
In neurology we've had some great news! We're finally off Keppra and still seizure free!! This has been one of my biggest reliefs. We visited with Dr Kinsman at the end of October, and got off the Keppra by the end of November. He was so excited to see Atticus! He just kept repeating, "You're just such a little warrior, man!" Then he would turn to the resident and explain about the "massive brain bleed" that Atticus had and how amazing it is that he has the cognitive function that he does. Atticus is very alert, aware, he has problem-solving skills, he's developing his coordination, and you would never even know that he'd ever had 1 bleed, much less 2 bleeds!! This is one area where the power of prayer becomes most obvious to me in Atticus' life. Atticus "never should have made it" through those brain bleeds. But with an army of prayers going up on his behalf, God chose to show His power and healed Atticus. And I thank Him each and every day.
In audiology there isn't much to report other than how big an impact having hearing aids has made on Atticus. Not only did they completely change his little world and expand it by leaps and bounds, but it completely changed him. He is just so active! He wants to explore everything. As he's gaining mobility, he's getting into more and more--just like a typical baby! LOL! He's also beginning to try to imitate sounds and tones. He'll purse his lips like he's about to say "b" or "m", but of course, his vocal chords still aren't healed, so it's still pretty growly. We're going back to Charleston tomorrow to visit with Dr Driscolo with ENT at MUSC. I know his vocal chords have made some progress just by the range of pitches he's able to make now, but I also know that they must still have a long way to go yet. I'm eager to hear what the Dr has to say tomorrow.
Hmmm....what else? Atticus is doing well with all of his therapies. For PT, he's finally starting to be able to sit up unaided for longer and longer periods of time, and he even ENJOYS playing in his ExerSaucer (which makes the PT very happy)! I found out the secret to keeping him upright in the ExerSaucer for longer periods of time was to turn on NFL network and let it ride...Atticus LOVES to watch football! It's the cutest thing. I thought it was just because of the bright colors, but if I change it to cartoons, he becomes bored and uninterested. The minute you switch it back to football, he's glued to the TV! He growls at the players, get excited about plays and even pushes with his legs to bounce in the seat! It's hilarious, but it's helping him make great progress! He's also beginning to pull his knees and elbows up under himself when he's on his stomach, and trying to coordinate how to crawl! It won't be long now until he's really mobile! Good thing he's still tethered by his oxygen tube so I can keep up with him! :) He already rolls around like a little tumbleweed and can push with his legs and spin on his back to swivel any direction he wants to go!
His OT and Speech therapies are also going well. He's becoming more dexterous with his hands, and is able to catch himself better from falling over when sitting up. Like I said earlier, he's beginning to try to imitate tones, and he loves to mimick behaviors. If I clap, he claps. I if bounce, he'll bounce, etc. It's a great precurser to speech once those vocal chords decided to get back together! ;) The Speech therapist is also working on some basic baby sign language to help his language skills develop.
All the developments with PT has also led us to add two new specialists to our resume. We met with Dr Locke, an orthopedist, and the folks at Braces & Boots. Atticus' right leg is significantly weaker than his left leg because of all the damage that happened during the Cath procedure when he was almost 1 month old. Since he's getting closer to weight bearing, the PT thought it was time to finally see an orthopedist about his leg. Dr Locke took an x-ray of Atticus' spine and hips, and examined his leg and came to several conclusions. First, his spine is slightly curved because the left side is so much stronger and used more often, but if we can play catch up on the right side, then it should straighten out. Second, his hips are straight and he didn't see any problems there. (Thank you God!) Third, there is a lot of muscle damage in the leg, but (once again, Thank God) there's no nerve damage because he's able to move the foot in the full range needed! So Dr Locke prescribed bilateral AFOs (leg braces from the knee down to the foot), a reverse walker with wheels, and a prone stander. (We'll see what those last two look like once they come in from the pharmacy!)
All this led us to the folks over at Braces & Boots, who actually make the AFOs. We went yesterday for our first appointment. It was pretty neat. They put casts on both of his legs from the knee down and then cut them off. They'll use these as molds to make the braces. I picked out his colors, yellow and green-one of each, and his velcro straps will have little footballs on them! :) I figure having the braces two different colors will help me keep them straight aobut which one goes on which leg! We go back on December 20th to pick them up and learn how to use them, take care of them, etc. Just in time for Christmas!
I think that catches us up on all the doctors, except for his regular pediatrician, Dr Goldberg, who couldn't be happier with him. He still has his G-tube for feedings, and he still is real happy about eating regular food. Although we're starting to have more good days than bad days with the G-tube, the constant throwing up still makes his resistant to having any food in his mouth. The good news is that due to the Speech therapy, he's more and more receptive to chewing on teethers, toys, etc. And, of course, fingers are still his favorite! lol!
Atticus is such a little miracle. He is so full of personality and I am so thankful for every day I have with him! Thanks for continuing to check in on us, and please remember to sign the guestbook! And as always, keep on prayin'!
I can't believe Atticus is already 14 months old now! He's gotten so big! He's up to 24.5lbs and is about 32 inches long! We've had some recent doctor visits, and added some new ones, so I'll try to go through them one by one and give you all the details. First, for obvious reasons, is the cardiologist. Thankfully, Atticus' heart function and oxygen saturations have been great, so no concerns there for the moment. Dr Williams is still looking at that magical 30lbs mark as the milestone before beginning to talk about the Fontane. Other than that, there's been no real changes in that department.
The pulmonology visits are fairly infrequent, because it's just going to take time for Atticus' lungs to heal completely, and there's no use just sitting in a doctor's office when there's nothing new to report. We did manage to go from .5L down to .25L, so that's at least forward progress!
In neurology we've had some great news! We're finally off Keppra and still seizure free!! This has been one of my biggest reliefs. We visited with Dr Kinsman at the end of October, and got off the Keppra by the end of November. He was so excited to see Atticus! He just kept repeating, "You're just such a little warrior, man!" Then he would turn to the resident and explain about the "massive brain bleed" that Atticus had and how amazing it is that he has the cognitive function that he does. Atticus is very alert, aware, he has problem-solving skills, he's developing his coordination, and you would never even know that he'd ever had 1 bleed, much less 2 bleeds!! This is one area where the power of prayer becomes most obvious to me in Atticus' life. Atticus "never should have made it" through those brain bleeds. But with an army of prayers going up on his behalf, God chose to show His power and healed Atticus. And I thank Him each and every day.
In audiology there isn't much to report other than how big an impact having hearing aids has made on Atticus. Not only did they completely change his little world and expand it by leaps and bounds, but it completely changed him. He is just so active! He wants to explore everything. As he's gaining mobility, he's getting into more and more--just like a typical baby! LOL! He's also beginning to try to imitate sounds and tones. He'll purse his lips like he's about to say "b" or "m", but of course, his vocal chords still aren't healed, so it's still pretty growly. We're going back to Charleston tomorrow to visit with Dr Driscolo with ENT at MUSC. I know his vocal chords have made some progress just by the range of pitches he's able to make now, but I also know that they must still have a long way to go yet. I'm eager to hear what the Dr has to say tomorrow.
Hmmm....what else? Atticus is doing well with all of his therapies. For PT, he's finally starting to be able to sit up unaided for longer and longer periods of time, and he even ENJOYS playing in his ExerSaucer (which makes the PT very happy)! I found out the secret to keeping him upright in the ExerSaucer for longer periods of time was to turn on NFL network and let it ride...Atticus LOVES to watch football! It's the cutest thing. I thought it was just because of the bright colors, but if I change it to cartoons, he becomes bored and uninterested. The minute you switch it back to football, he's glued to the TV! He growls at the players, get excited about plays and even pushes with his legs to bounce in the seat! It's hilarious, but it's helping him make great progress! He's also beginning to pull his knees and elbows up under himself when he's on his stomach, and trying to coordinate how to crawl! It won't be long now until he's really mobile! Good thing he's still tethered by his oxygen tube so I can keep up with him! :) He already rolls around like a little tumbleweed and can push with his legs and spin on his back to swivel any direction he wants to go!
His OT and Speech therapies are also going well. He's becoming more dexterous with his hands, and is able to catch himself better from falling over when sitting up. Like I said earlier, he's beginning to try to imitate tones, and he loves to mimick behaviors. If I clap, he claps. I if bounce, he'll bounce, etc. It's a great precurser to speech once those vocal chords decided to get back together! ;) The Speech therapist is also working on some basic baby sign language to help his language skills develop.
All the developments with PT has also led us to add two new specialists to our resume. We met with Dr Locke, an orthopedist, and the folks at Braces & Boots. Atticus' right leg is significantly weaker than his left leg because of all the damage that happened during the Cath procedure when he was almost 1 month old. Since he's getting closer to weight bearing, the PT thought it was time to finally see an orthopedist about his leg. Dr Locke took an x-ray of Atticus' spine and hips, and examined his leg and came to several conclusions. First, his spine is slightly curved because the left side is so much stronger and used more often, but if we can play catch up on the right side, then it should straighten out. Second, his hips are straight and he didn't see any problems there. (Thank you God!) Third, there is a lot of muscle damage in the leg, but (once again, Thank God) there's no nerve damage because he's able to move the foot in the full range needed! So Dr Locke prescribed bilateral AFOs (leg braces from the knee down to the foot), a reverse walker with wheels, and a prone stander. (We'll see what those last two look like once they come in from the pharmacy!)
All this led us to the folks over at Braces & Boots, who actually make the AFOs. We went yesterday for our first appointment. It was pretty neat. They put casts on both of his legs from the knee down and then cut them off. They'll use these as molds to make the braces. I picked out his colors, yellow and green-one of each, and his velcro straps will have little footballs on them! :) I figure having the braces two different colors will help me keep them straight aobut which one goes on which leg! We go back on December 20th to pick them up and learn how to use them, take care of them, etc. Just in time for Christmas!
I think that catches us up on all the doctors, except for his regular pediatrician, Dr Goldberg, who couldn't be happier with him. He still has his G-tube for feedings, and he still is real happy about eating regular food. Although we're starting to have more good days than bad days with the G-tube, the constant throwing up still makes his resistant to having any food in his mouth. The good news is that due to the Speech therapy, he's more and more receptive to chewing on teethers, toys, etc. And, of course, fingers are still his favorite! lol!
Atticus is such a little miracle. He is so full of personality and I am so thankful for every day I have with him! Thanks for continuing to check in on us, and please remember to sign the guestbook! And as always, keep on prayin'!
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