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'!
Tuesday, October 5, 2010
Atticus' 1st Birthday!!!
I know it's been a while since I posted on here, but today is a very special day! It's Atticus' 1st birthday!!!! I can hardly believe that it's been a whole year since Atticus was born and began his journey with HLHS. You can go back and reread his story to see what all he's been through, but today I'd like to recap just one day....the day he was born.
Robbie and I had arrived at the hospital the night before I was scheduled to be induced. When we had arrived, I had just driven across the state and then walked 3 blocks to the hospital (we'd parked at the wrong garage). When the nurses had checked me in, I was already dialated 3 cm!! They gave me some medicine to slow me back down as it was Sunday and none of the doctors that needed to be there were there that night. Thankfully Atticus was a good boy and waited until the next day.
Bright and early the next morning, the doctors started me on Pitocin (?) to induce my labor. I opted to get the epidural, which was both great and horrible. It was great because it was the first time with any of my deliveries that it worked the way it was supposed to!! I finally was completely numb! It was horrible because it took over an hour to place (they had a resident with them, and let her "learn" how), the resident ran the cath into my muscle wall (which reeeeeeeeeally hurt later), and they had to do it again. But like I said, once they were done...aaaahhhhhhhhhh. I told Robbie that if they could promise it work every time, I'd gladly have as many kids as he wanted!!! But only if!
We passed the time by watching a little morning news, some comedy, and being closely monitored by the doctors and nurses. My mom was there, Robbie-of course, and my preacher and his wife came also. That really meant a lot. Every one had just decided to go for some lunch (none for me until after the baby) and the preacher and his wife left to go get it for everyone.
The nurse came in to check my progress, looked at the machine that keeps tracks of your contractions, looked at me and said, "Are you feeling any pressure?" I replied that I was too numb, but I guessed I did feel a little bit of pressure down low. The nurse said that's what she figured and started calling everyone else to get me ready to roll into the Operating Room. (I had to deliver in the OR just in case something started to go wrong with Atticus during the delivery, and so they could hand him off to the Pediatric Cardiac Team that was waiting on the other side of the OR to evaluate him as soon as he was born.) Luckily, the preacher and his wife arrived just in time to see me being wheeled across the hallway.
Robbie got into his OR scrubs and came in with me. There were at least 10 people in there! The doctor (not at all the lady I was expecting to deliver me) told me to push, and out Atticus came! It only took 1 push!! They held him up for just a moment so I could see him, and then cut the cord, wrapped him up, and out the door he went to the other half of the OR to the awaiting team of doctors. My mom tells her version of being on the outside of the OR. She was talking with Brian and Sondra (the preacher and his wife) about how she hoped she'd get a chance to see him went, whoosh! Out they came with Atticus. It was only for a moment, as they ducked into the other room, but it was enough. They all joked that the delivery took less time than it did to get me in the OR!
I was cleaned up and wheeled back across into my room to recover from the delivery. About an hour after Atticus was born, the nurses wheeled him into my room, in an incubation unit. I couldn't hold him, but I could stick my hands in and hold his tiny hand. Thankfully, Valerie (my sister) had arrived a few minutes before with Sandy, Gideon, and Jamal (my nephew). We wanted to make sure that they all got a chance to meet Atticus, because we didn't know how the surgeries would go, and whether they would get another chance to see him. Unfortunately, he was only in there for about 5 minutes, when the heater on his unit started to short out, and they had to take him away to the NNICU (neo-natal ICU--the PCICU was full for a couple of days).
It broke my heart that he had to leave me so soon. After all, each moment was precious because I might have so few of them. I remember wanting to go see him that night, but feeling far too exhausted to go. It would be a whole week before I could hold him for the first time, on the night before his first surgery. He would already be hooked up to a ventilator and about a million monitors, but it didn't matter. The moment they placed him in my arms, I knew I never wanted to let him go. I was so afraid of what was about to happened (though, if I had known everything he'd go through then, I'd have said, "No! I'm not strong enough to handle that!"). But, you can read that story in my earlier posts.
Atticus arrived in this world on October 5, 2009 at 12:50PM. He weighed 8 lbs 15 ozs (almost 9 lbs!--and a week early!) and was 21.5 inches long. Now, a year later, God has seen fit to let Atticus not only make it through all the many complications he has had, but to thrive and flourish! He is currently about 23 lbs and about 30 inches long! Thank you all who have prayed for us, kept us in your thoughts, helped us in so many ways, and that have shared Atticus' journey to date with us. I know that he still has more to go through before we can (hopefully!) have all his surgeries behind us, but today none of that matters. God has blessed me by letting me have the chance to celebrate Atticus' 1st birthday! Thank you all again for celebrating this joyful day with us, and as always, keep on prayin'!!
Robbie and I had arrived at the hospital the night before I was scheduled to be induced. When we had arrived, I had just driven across the state and then walked 3 blocks to the hospital (we'd parked at the wrong garage). When the nurses had checked me in, I was already dialated 3 cm!! They gave me some medicine to slow me back down as it was Sunday and none of the doctors that needed to be there were there that night. Thankfully Atticus was a good boy and waited until the next day.
Bright and early the next morning, the doctors started me on Pitocin (?) to induce my labor. I opted to get the epidural, which was both great and horrible. It was great because it was the first time with any of my deliveries that it worked the way it was supposed to!! I finally was completely numb! It was horrible because it took over an hour to place (they had a resident with them, and let her "learn" how), the resident ran the cath into my muscle wall (which reeeeeeeeeally hurt later), and they had to do it again. But like I said, once they were done...aaaahhhhhhhhhh. I told Robbie that if they could promise it work every time, I'd gladly have as many kids as he wanted!!! But only if!
We passed the time by watching a little morning news, some comedy, and being closely monitored by the doctors and nurses. My mom was there, Robbie-of course, and my preacher and his wife came also. That really meant a lot. Every one had just decided to go for some lunch (none for me until after the baby) and the preacher and his wife left to go get it for everyone.
The nurse came in to check my progress, looked at the machine that keeps tracks of your contractions, looked at me and said, "Are you feeling any pressure?" I replied that I was too numb, but I guessed I did feel a little bit of pressure down low. The nurse said that's what she figured and started calling everyone else to get me ready to roll into the Operating Room. (I had to deliver in the OR just in case something started to go wrong with Atticus during the delivery, and so they could hand him off to the Pediatric Cardiac Team that was waiting on the other side of the OR to evaluate him as soon as he was born.) Luckily, the preacher and his wife arrived just in time to see me being wheeled across the hallway.
Robbie got into his OR scrubs and came in with me. There were at least 10 people in there! The doctor (not at all the lady I was expecting to deliver me) told me to push, and out Atticus came! It only took 1 push!! They held him up for just a moment so I could see him, and then cut the cord, wrapped him up, and out the door he went to the other half of the OR to the awaiting team of doctors. My mom tells her version of being on the outside of the OR. She was talking with Brian and Sondra (the preacher and his wife) about how she hoped she'd get a chance to see him went, whoosh! Out they came with Atticus. It was only for a moment, as they ducked into the other room, but it was enough. They all joked that the delivery took less time than it did to get me in the OR!
I was cleaned up and wheeled back across into my room to recover from the delivery. About an hour after Atticus was born, the nurses wheeled him into my room, in an incubation unit. I couldn't hold him, but I could stick my hands in and hold his tiny hand. Thankfully, Valerie (my sister) had arrived a few minutes before with Sandy, Gideon, and Jamal (my nephew). We wanted to make sure that they all got a chance to meet Atticus, because we didn't know how the surgeries would go, and whether they would get another chance to see him. Unfortunately, he was only in there for about 5 minutes, when the heater on his unit started to short out, and they had to take him away to the NNICU (neo-natal ICU--the PCICU was full for a couple of days).
It broke my heart that he had to leave me so soon. After all, each moment was precious because I might have so few of them. I remember wanting to go see him that night, but feeling far too exhausted to go. It would be a whole week before I could hold him for the first time, on the night before his first surgery. He would already be hooked up to a ventilator and about a million monitors, but it didn't matter. The moment they placed him in my arms, I knew I never wanted to let him go. I was so afraid of what was about to happened (though, if I had known everything he'd go through then, I'd have said, "No! I'm not strong enough to handle that!"). But, you can read that story in my earlier posts.
Atticus arrived in this world on October 5, 2009 at 12:50PM. He weighed 8 lbs 15 ozs (almost 9 lbs!--and a week early!) and was 21.5 inches long. Now, a year later, God has seen fit to let Atticus not only make it through all the many complications he has had, but to thrive and flourish! He is currently about 23 lbs and about 30 inches long! Thank you all who have prayed for us, kept us in your thoughts, helped us in so many ways, and that have shared Atticus' journey to date with us. I know that he still has more to go through before we can (hopefully!) have all his surgeries behind us, but today none of that matters. God has blessed me by letting me have the chance to celebrate Atticus' 1st birthday! Thank you all again for celebrating this joyful day with us, and as always, keep on prayin'!!
Tuesday, August 24, 2010
160 days......+1!!
Today was certainly a big day! Not only did Atticus's big sister Sandy start her very first day of kindergarten (homeschool), but Atticus has now officially been OUT of the hospital 1 day longer than he was IN the hospital!! What a wonderful gift from God! My oldest child is growing up, and moving on to school, and my youngest child has now been home with all of us for an offical majority of his life! This has been a day I've been looking forward to on both fronts!
Words can't describe how special it is to have Atticus home longer than he's been away. It's hard to express the emotions that go along with this day. It's almost like validation after such a rough and difficult start to Atticus' life. To have been hospitalized for such a long time, we can officially begin to say that he's been "well" more than he's been "sick". To show the power of God and prayer; to be able to say that he's not had ANY emergency room visits or ANY rehospitalizations since we left MUSC now 161 days ago. That is a wondeful feeling.
We went to visit all our wonderful doctors and nurses in the PCICU on Saturday, when Atticus had some check-ups in Charleston. (His appts were the day before, but they had a baby come back from the OR just as we got there, so we came back the next day.) It wonderful to see everyone under such very different circumstances. The nurses all took turns holding him, playing with him, and snapping pictures of him with their phones. They couldn't believe how big he's gotten (up to 22.3lbs!), how many teeth he now has, his new hearing aids, and how red his hair has turned! Several told me how he was their inspiration, because he was able to pull through so much! They said they share his story with some of their new families; especially the ones going through a particularly hard time, as proof that sometimes, you never know what can happen. That was humbling. I'm glad to know that Atticus already means so much to people I've never met; and that maybe his story can bring them hope through difficult times.
Thank you all for your many continued prayers for Atticus and our family. He is living proof that God is powerful and that He has a plan for all of us. Thank you for continuing to share in our journey. I am so humbled by all of your love and kindness and support. Atticus still has so much to face in his life, so as always....Keep on prayin'!!
Words can't describe how special it is to have Atticus home longer than he's been away. It's hard to express the emotions that go along with this day. It's almost like validation after such a rough and difficult start to Atticus' life. To have been hospitalized for such a long time, we can officially begin to say that he's been "well" more than he's been "sick". To show the power of God and prayer; to be able to say that he's not had ANY emergency room visits or ANY rehospitalizations since we left MUSC now 161 days ago. That is a wondeful feeling.
We went to visit all our wonderful doctors and nurses in the PCICU on Saturday, when Atticus had some check-ups in Charleston. (His appts were the day before, but they had a baby come back from the OR just as we got there, so we came back the next day.) It wonderful to see everyone under such very different circumstances. The nurses all took turns holding him, playing with him, and snapping pictures of him with their phones. They couldn't believe how big he's gotten (up to 22.3lbs!), how many teeth he now has, his new hearing aids, and how red his hair has turned! Several told me how he was their inspiration, because he was able to pull through so much! They said they share his story with some of their new families; especially the ones going through a particularly hard time, as proof that sometimes, you never know what can happen. That was humbling. I'm glad to know that Atticus already means so much to people I've never met; and that maybe his story can bring them hope through difficult times.
Thank you all for your many continued prayers for Atticus and our family. He is living proof that God is powerful and that He has a plan for all of us. Thank you for continuing to share in our journey. I am so humbled by all of your love and kindness and support. Atticus still has so much to face in his life, so as always....Keep on prayin'!!
Wednesday, August 18, 2010
We have Hearing Aids!!
We had a very exciting day today...Atticus finally got his hearing aids!!! It was amazing! I'm so glad I got to record it on video to share with our friends and family! Too bad I can't post it on here! :) But I'll try my best to describe it.
Atticus was very wiggly and squirmey while Dr. Little was cutting the tubes to the correct length to fit over his ear. Dr. Little was talking to Robbie and I while she made the final adjustments; explaining a few last minute details about the care of them, when she slipped the first one in his right ear. He immediately froze and got very still. My husband smiled and gently talked to him. He turned as Dr. Little was coming around to place the other hearing aid in his left hear, because he could hear her! He snapped his head around, and his eyes continued to be open wide as she place the second hearing aid.
Everyone began to talk at once, taking turns vying for his attention, and Atticus just stared with his fingers in his mouth (his natural defense/comfort position). This continued for about 2 minutes, when once again, Atticus turned and looked at Robbie, and it's like the light clicked on! He realized the sound was coming from Daddy, and he burst into the biggest smile! He quickly turned his head to me and smiled up at me, reaching up to grab my face, and leaning his head on my chest. Then he looked at Robbie again and laughed, and it was all ok! He was full of wonder at where these different noises were coming from, and you could tell he had just entered a whole new world of sound! He was so exhausted by the time we got home that he slept for almost 3 hours!
It was such a great moment; one I'll truly treasure! I can't wait to see how this will improve his understanding of the world around him! It's already made a difference in his response to his name and the various sounds around him. I feel so blessed! Thank you all for continuing to pray for us!
Atticus was very wiggly and squirmey while Dr. Little was cutting the tubes to the correct length to fit over his ear. Dr. Little was talking to Robbie and I while she made the final adjustments; explaining a few last minute details about the care of them, when she slipped the first one in his right ear. He immediately froze and got very still. My husband smiled and gently talked to him. He turned as Dr. Little was coming around to place the other hearing aid in his left hear, because he could hear her! He snapped his head around, and his eyes continued to be open wide as she place the second hearing aid.
Everyone began to talk at once, taking turns vying for his attention, and Atticus just stared with his fingers in his mouth (his natural defense/comfort position). This continued for about 2 minutes, when once again, Atticus turned and looked at Robbie, and it's like the light clicked on! He realized the sound was coming from Daddy, and he burst into the biggest smile! He quickly turned his head to me and smiled up at me, reaching up to grab my face, and leaning his head on my chest. Then he looked at Robbie again and laughed, and it was all ok! He was full of wonder at where these different noises were coming from, and you could tell he had just entered a whole new world of sound! He was so exhausted by the time we got home that he slept for almost 3 hours!
It was such a great moment; one I'll truly treasure! I can't wait to see how this will improve his understanding of the world around him! It's already made a difference in his response to his name and the various sounds around him. I feel so blessed! Thank you all for continuing to pray for us!
Thursday, July 15, 2010
A good round of updates!
Hello everyone! Sorry its been a little while since I gave a good Atticus update, but life is always busy, and sometimes I'm just too tired to get on the computer! I thought it would be a good time to send a new update because Atticus has now officially been home for 4 months now!!! Hooray! He's still offically spent more time IN the hospital than OUT of it, but we're rapidly approaching an equilibrium point!
Atticus is now 9 months old, 21 lbs 13 oz, and a little over 28 in long! Whew! What a big boy!! His doctors all remain happy with his progress, as well as his therapists. The only adjustment that Dr Goldberg made is to cut back on his overnight feed, so that he doesn't gain too much weight too quickly. I'm sure not ready for him to hit that 30lbs-35lbs mark needed for the Fontaine quite yet! So we'll scale him back a little bit. We still don't have any other of his doctors to visit right now. We'll see his cardiologist on July 26th, the pulmonologist in 2 more months after that, and some follow ups in Charleston in late August. Which is nice, because that means the longer between visits, the better Atticus must be doing!
We also got some exciting news today from the Audiologist. Atticus' approval paperwork has finally come through!! Unfortunately, they were still waiting on MUSC to fax over the offical results from his hearing screen, so Dr Little can't make her recommendation until she has that in his file. Good news is that I got hold of the folks from MUSC's audiology department, and they said they would send it this afternoon. So hopefully we can follow up with Dr Little on Monday to make sure they got the needed paperwork, and get Atticus his hearing aids soon! I'm so excited! I can't wait for Atticus to finally be able to hear well. I just can't wait to see his reaction!
Atticus also continues to improve physically. He's still receiving physical, occupational, and speech therapy at home. The physical therapist was really impressed with his improvements when she came yesterday. He's starting to be less resistant to being on his tummy, and can do better with turning over on his own. He's also starting to be more willing to let us bring new things to his mouth (toothbrush, teething rings, etc) during his speech therapy, which will go a long way in getting him off his G-tube and able to feed by mouth. And his occupational therapy is going well do, he's doing better in reaching for objects, transferring them between hands, looking for fallen objects, and grasping large and small objects. He continues to make small strides every day. He's even started clapping his hands, which is a 9 month development!! Way to go Atti!
Atticus really is such a miracle. With everything he's been through, he continues to fight each day to improve and grow stronger. And he does it all with a smile! He's really my inspiration when I get to feeling like something is too tough. After all, if he can make it through everything he has to do, what's my excuse?! Thanks for everyone's continued prayers and well wishes! I'm a firm believer that they really do make a difference. So, be sure to keep them up!! I'll try to keep the updates coming, and maybe a little more frequently! ;)
Atticus is now 9 months old, 21 lbs 13 oz, and a little over 28 in long! Whew! What a big boy!! His doctors all remain happy with his progress, as well as his therapists. The only adjustment that Dr Goldberg made is to cut back on his overnight feed, so that he doesn't gain too much weight too quickly. I'm sure not ready for him to hit that 30lbs-35lbs mark needed for the Fontaine quite yet! So we'll scale him back a little bit. We still don't have any other of his doctors to visit right now. We'll see his cardiologist on July 26th, the pulmonologist in 2 more months after that, and some follow ups in Charleston in late August. Which is nice, because that means the longer between visits, the better Atticus must be doing!
We also got some exciting news today from the Audiologist. Atticus' approval paperwork has finally come through!! Unfortunately, they were still waiting on MUSC to fax over the offical results from his hearing screen, so Dr Little can't make her recommendation until she has that in his file. Good news is that I got hold of the folks from MUSC's audiology department, and they said they would send it this afternoon. So hopefully we can follow up with Dr Little on Monday to make sure they got the needed paperwork, and get Atticus his hearing aids soon! I'm so excited! I can't wait for Atticus to finally be able to hear well. I just can't wait to see his reaction!
Atticus also continues to improve physically. He's still receiving physical, occupational, and speech therapy at home. The physical therapist was really impressed with his improvements when she came yesterday. He's starting to be less resistant to being on his tummy, and can do better with turning over on his own. He's also starting to be more willing to let us bring new things to his mouth (toothbrush, teething rings, etc) during his speech therapy, which will go a long way in getting him off his G-tube and able to feed by mouth. And his occupational therapy is going well do, he's doing better in reaching for objects, transferring them between hands, looking for fallen objects, and grasping large and small objects. He continues to make small strides every day. He's even started clapping his hands, which is a 9 month development!! Way to go Atti!
Atticus really is such a miracle. With everything he's been through, he continues to fight each day to improve and grow stronger. And he does it all with a smile! He's really my inspiration when I get to feeling like something is too tough. After all, if he can make it through everything he has to do, what's my excuse?! Thanks for everyone's continued prayers and well wishes! I'm a firm believer that they really do make a difference. So, be sure to keep them up!! I'll try to keep the updates coming, and maybe a little more frequently! ;)
Thursday, June 24, 2010
Another long post....
Hello everyone!
Wow. Where to start....I guess I'll start with the fact that it was about a year ago that I had my OB visit during my pregnancy with Atticus and we learned that he had some sort of heart defect.
I remember it like it was yesterday. I had gone for the normal ultrasound at 5 months gestation, but the technician was having trouble getting the measurements for Atticus' heart because he was turned at a funny angle. No problem, they had said. Everything looked proportional. They would just do another ultrasound when I came back for my 6 month check-up to get the measurements they needed. And little did I know that when I came back just 1 month later, my entire world was about to be turned upside down!
I remember going through the usual routine...climb up on the table, pull your pants down just below your hip line, lay back, and relax. It was just going to be a quick ultrasound to get those heart measurements. Except, it seemed to taking a really long time. Even compared to a normal ultrasound. But I waited patiently. Maybe he was turned oddly again. Then the technician said the words that made me instantly know that something was up. She told me, "Ok. Well, I'm just gonna run these photos down to Dr Minto so she can have a look at them. Go ahead and clean up (from all the gooey ultrasound gel), and have a seat until they call you back." What did she mean she was going to run the photos to Dr Minto? Why? This was my third pregnancy, and no technician had ever done that. They always just started cutting them apart and taping them in the file. What was going on?!
I waited anxiously for Dr Minto to come into my room once I was back there. Thankfully, she didn't keep me waiting long. She walked in with her usual "How are we doing today?"; I replied, "Fine." Then her face changed and she looked at me and said, "Well, we think there's something wrong with the baby's heart. It could be nothing, but I want to send you to a specialist to make sure." Even though I had tried to prepare myself for some sort of bad news; it hit me like a ton of bricks. This is never the type of visit you want during your pregnancy. I tried to be brave, but Dr Minto, having been my OB/GYN for many years, and delivering both my other children, hugged me around my neck, and said, "It'll be ok. Go ahead and let it out." At which point I immediately began to cry. She held me for just a moment, handed me some tissues, and said, "Take all the time you need. I'll go set up that appointment for you. I'll be back in just a minute."
I dried my eyes, said a desperate prayer, and tried to sort through the million thoughts swimming through my brain at that moment. How would Robbie react? What exactly was wrong with my precious unborn son? How would this effect him? How would this effect our family? Could it really be nothing? I knew the answer to that one in the bottom of my heart. I knew that it wasn't nothing. I knew it was something serious. I had really known all along, but had just shrugged it off as normal pregnancy jitters. I had never been able to shake that nagging feeling in the back of my mind. He didn't seem as active as either Sandy or Gideon. He just didn't seem to do a lot of the things that they had. Maybe it was just "Mother's Intuition". Maybe God had just been trying to prepare me. Dr Minto came back and gave me all the necessary info. I would have another appointment the next day with a specialist through MCG in Augusta, GA.
I remember going home, and going in to talk to Robbie. My wonderful husband; he knew that something was wrong the moment I stepped in the door. He held me on the bed as I cried and told him all that the doctor had told me. He tried to reassure me that maybe it was nothing. No need to get upset just yet. Wait until the appointment tomorrow. He even called out of work just to stay with me for the rest of the day. God certainly blessed me to give me a husband like Robbie. He is wonderful in more ways than I can name.
I went to the specialist's office and waited anxiously. Finally, it was my turn, and I went back for the ultrasound. This was pretty much like any other ultrasound, except it was mostly looking at his heart and arteries around it, and it was MUCH longer. Finally, once the doctor had had a chance to look at everything; he came in, sat down on a stool below me and began with words that would ring truer than even he could imagine. "It's called Hypoplastic Left Heart Syndrome," he said. "You didn't sign up for this roller coaster, but that's exactly what its about to be." If only he could have know what would happen over the next year!! He then proceeded to give me a brief overview of what to expect next, reassured me that the pregnancies are generally unremarkable, and that the baby should be fine until birth. He was also very candid (and I still thank him for his honesty) about the best route of care. He told me that they could do everything there at MCG, but because I was on SC Medicaid (I had been laid off from my job just a few months earlier) it was sometimes difficult to get things paid for, since they were in GA. Also, he told me that their pediatric cardiologist was fresh out of Med School, and the folks down at MUSC (some of whom he had actually worked with) were some of the best in the country, and likely our better choice of routes to take. I thanked him, and headed home to begin my research.
The articles and information that I gathered over the next several days, did nothing to really help my anxiety. While I was gathering LOTS of useful information, which made me feel like I was doing something in an otherwise helpless situation, it was grim. The statistics were not reassuring. I just felt like I was in a whirlwind of a daze. There was a whole other world that I was being inducted into, and I just felt lost. I have a strong faith in God, and I knew that all things happen for a reason. No matter how helpless I felt; I knew that God was in control. He had a plan. I just prayed that His plans were all things I was praying to happen (or not to for that matter).
And this began the long series of trips to Columbia at the MUSC High Risk Clinics there, too many BPP ultrasounds to count, gestational hypertension (gee, wonder why my blood pressure was high? lol), etc, etc; all the way to the MUSC in Charleston where my sweet Atticus was born, and the real journey began. Throughout the rest of my pregnancy; I continued to prepare myself as best I could. Nothing could have really prepared me for what was going to happen, but I did my best. Above all, God granted me peace and sanity. He held me every step of the way. As I've already said, God has a plan for everything, even when we can't understand or see what that is. I guess that's why they call it "Faith". You just have to believe.
Thank you again to everyone who has prayed, sent well wishes or healing thoughts, who'scalled, sent cards, visited, given us money, or supported us in so many other ways. You never can fully appreciate how much that means until you become the recipient of such love and kindness. Atticus still has a long way to go, but I know that God has a plan for him. I continue to trust in Him; for He has never let me down. He might lead me down a path that I would have never chosen for myself; but where He leads; I will follow. Good night, and as always....keep on prayin'!
Wow. Where to start....I guess I'll start with the fact that it was about a year ago that I had my OB visit during my pregnancy with Atticus and we learned that he had some sort of heart defect.
I remember it like it was yesterday. I had gone for the normal ultrasound at 5 months gestation, but the technician was having trouble getting the measurements for Atticus' heart because he was turned at a funny angle. No problem, they had said. Everything looked proportional. They would just do another ultrasound when I came back for my 6 month check-up to get the measurements they needed. And little did I know that when I came back just 1 month later, my entire world was about to be turned upside down!
I remember going through the usual routine...climb up on the table, pull your pants down just below your hip line, lay back, and relax. It was just going to be a quick ultrasound to get those heart measurements. Except, it seemed to taking a really long time. Even compared to a normal ultrasound. But I waited patiently. Maybe he was turned oddly again. Then the technician said the words that made me instantly know that something was up. She told me, "Ok. Well, I'm just gonna run these photos down to Dr Minto so she can have a look at them. Go ahead and clean up (from all the gooey ultrasound gel), and have a seat until they call you back." What did she mean she was going to run the photos to Dr Minto? Why? This was my third pregnancy, and no technician had ever done that. They always just started cutting them apart and taping them in the file. What was going on?!
I waited anxiously for Dr Minto to come into my room once I was back there. Thankfully, she didn't keep me waiting long. She walked in with her usual "How are we doing today?"; I replied, "Fine." Then her face changed and she looked at me and said, "Well, we think there's something wrong with the baby's heart. It could be nothing, but I want to send you to a specialist to make sure." Even though I had tried to prepare myself for some sort of bad news; it hit me like a ton of bricks. This is never the type of visit you want during your pregnancy. I tried to be brave, but Dr Minto, having been my OB/GYN for many years, and delivering both my other children, hugged me around my neck, and said, "It'll be ok. Go ahead and let it out." At which point I immediately began to cry. She held me for just a moment, handed me some tissues, and said, "Take all the time you need. I'll go set up that appointment for you. I'll be back in just a minute."
I dried my eyes, said a desperate prayer, and tried to sort through the million thoughts swimming through my brain at that moment. How would Robbie react? What exactly was wrong with my precious unborn son? How would this effect him? How would this effect our family? Could it really be nothing? I knew the answer to that one in the bottom of my heart. I knew that it wasn't nothing. I knew it was something serious. I had really known all along, but had just shrugged it off as normal pregnancy jitters. I had never been able to shake that nagging feeling in the back of my mind. He didn't seem as active as either Sandy or Gideon. He just didn't seem to do a lot of the things that they had. Maybe it was just "Mother's Intuition". Maybe God had just been trying to prepare me. Dr Minto came back and gave me all the necessary info. I would have another appointment the next day with a specialist through MCG in Augusta, GA.
I remember going home, and going in to talk to Robbie. My wonderful husband; he knew that something was wrong the moment I stepped in the door. He held me on the bed as I cried and told him all that the doctor had told me. He tried to reassure me that maybe it was nothing. No need to get upset just yet. Wait until the appointment tomorrow. He even called out of work just to stay with me for the rest of the day. God certainly blessed me to give me a husband like Robbie. He is wonderful in more ways than I can name.
I went to the specialist's office and waited anxiously. Finally, it was my turn, and I went back for the ultrasound. This was pretty much like any other ultrasound, except it was mostly looking at his heart and arteries around it, and it was MUCH longer. Finally, once the doctor had had a chance to look at everything; he came in, sat down on a stool below me and began with words that would ring truer than even he could imagine. "It's called Hypoplastic Left Heart Syndrome," he said. "You didn't sign up for this roller coaster, but that's exactly what its about to be." If only he could have know what would happen over the next year!! He then proceeded to give me a brief overview of what to expect next, reassured me that the pregnancies are generally unremarkable, and that the baby should be fine until birth. He was also very candid (and I still thank him for his honesty) about the best route of care. He told me that they could do everything there at MCG, but because I was on SC Medicaid (I had been laid off from my job just a few months earlier) it was sometimes difficult to get things paid for, since they were in GA. Also, he told me that their pediatric cardiologist was fresh out of Med School, and the folks down at MUSC (some of whom he had actually worked with) were some of the best in the country, and likely our better choice of routes to take. I thanked him, and headed home to begin my research.
The articles and information that I gathered over the next several days, did nothing to really help my anxiety. While I was gathering LOTS of useful information, which made me feel like I was doing something in an otherwise helpless situation, it was grim. The statistics were not reassuring. I just felt like I was in a whirlwind of a daze. There was a whole other world that I was being inducted into, and I just felt lost. I have a strong faith in God, and I knew that all things happen for a reason. No matter how helpless I felt; I knew that God was in control. He had a plan. I just prayed that His plans were all things I was praying to happen (or not to for that matter).
And this began the long series of trips to Columbia at the MUSC High Risk Clinics there, too many BPP ultrasounds to count, gestational hypertension (gee, wonder why my blood pressure was high? lol), etc, etc; all the way to the MUSC in Charleston where my sweet Atticus was born, and the real journey began. Throughout the rest of my pregnancy; I continued to prepare myself as best I could. Nothing could have really prepared me for what was going to happen, but I did my best. Above all, God granted me peace and sanity. He held me every step of the way. As I've already said, God has a plan for everything, even when we can't understand or see what that is. I guess that's why they call it "Faith". You just have to believe.
Thank you again to everyone who has prayed, sent well wishes or healing thoughts, who'scalled, sent cards, visited, given us money, or supported us in so many other ways. You never can fully appreciate how much that means until you become the recipient of such love and kindness. Atticus still has a long way to go, but I know that God has a plan for him. I continue to trust in Him; for He has never let me down. He might lead me down a path that I would have never chosen for myself; but where He leads; I will follow. Good night, and as always....keep on prayin'!
Subscribe to:
Posts (Atom)