Hey everyone! Just wanted to give a quick update on Atticus. He's doing much better since my last post. Thankfully, we haven't had any repeats of that performance. We had our cardiology visit on Monday, and everything is doing well. His heart function is good, and he's up to 26lbs and 34 inches long! Dr Williams decided to do another echocardiogram since it had been about 6 months since his last one. Atticus was pretty well behaved during the process, but you can tell he's starting to get to the age where he really doesn't like lying still for that long.
Everything was going fine just like a normal check-up, when Dr Williams brought up the subject of Atticus's Fontan. He thinks that after his next visit in October (a few weeks after his 2nd birthday), we should probably start the process for the next open heart surgery, with it probably be scheduled sometime in January 2012. I'll admit that I've know that this day would be coming since I learned of Atticus's heart condition at around 24 weeks gestation, but it still hit me like a ton of bricks. His decision was based more on Atticus's weight than anything to do with his heart function, but it still makes me panic just a little. I can't help but think about everything we went through with Atticus during that first 160 days. My mind starts going down all the little "what if" rabbit trails, and I have to force myself to focus on today, the here and now. Nothing is set in stone yet, so there's no sense in worrying about something that hasn't happened yet, I keep reminding myself.
Other than that, Atticus is doing great! His PT and OT are having to both come up with a new list of goals for him because he's managed to finally check them all off! We've been practicing walking in his reverse walker, he's finally letting objects go inside of a container, he's starting to learn more and more signs, and he's getting more and more imaginative in his play! Atticus LOVES the video series Signing Time. He's made the connection that the signs mean different things, and he's fascinated. He's learned to sign: ball, more, Mommy, Daddy, baby, book, water, sleepy, "Signing Time", eat, fish, dog, flower, bye-bye, milk, cheese, and he recognizes even more signs! Everytime he sees a TV he starts making the sign for "Signing Time". He even did it when we were having his echocardiogram done. lol! He thought the screen for the machine was a TV!
I think that's about all for now. I'll keep everyone updated as we learn more about Atticus's Fontan. Until then, keep on prayin!
Friday, July 29, 2011
Wednesday, July 13, 2011
Not the way I wanted to start my morning......
So yesterday was a pretty stressful day, and unfortunately it started very early at 5:30 AM. I had given Atticus his last medicine at around 1:30 AM and gone to bed. Then, around 5:30 AM, I had woken up to use the bathroom. On the way out of my bathroom, I noticed the smell of formula. This in and of its self is not totally unusual. Atticus has a tendency to toss and turn in the night, and sometimes he disconnects himself from his feeding pump in the process. So I walked over to his bed and reached down in the dark to check his connection, and felt that it was intact. So I thought that he must have gotten the extension tube totally twisted around and actually disconnected it from his Mic-key button.
And that's when I felt the balloon, and totally went into freak mode.
For anyone who's not familiar with a g-tube, the balloon is what is inflated on the inside of the stomach to hold the Mic-key button in place. So when I felt the balloon, there was one imminent question in the front of my mind.....How long has this been out??!
I immediately ran over and turned on the light switch (Poor Robbie!), ripped Atticus' formula-soaked blanket off of him, and pulled him out of the crib and laid him flat on the floor. But once I lifted up his shirt, I saw that the answer to that question was...."for too long". The hole for the Mic-key button was almost completely closed. As I sat there on the floor, swearing and crying and praying, a million thoughts started running through my brain. "Do we go to MCG (which is closer) or to we try to go for MUSC (who was more familiar with his case)? What should I pack for him? Thank God the older kids are spending the night at Nana's.....etc" Then my brain took the course that all mothers' brains take, which is inevitably the worse case scenario. I was sure that this would mean another surgery to replace the Mic-key button, which would mean he'd have to go on a ventilator again, which meant more sedation, etc, etc, etc.
I finally managed to pull myself together after about 5 minutes to get my butt in gear. Robbie and I got dressed, he got the car ready while I packed a bag for Atticus, and we headed out the door towards MCG. Thankfully during all this craziness, Atticus was laughing and squealing, thinking that he was getting to go on an early morning car ride. He wasn't in any pain and was pretty pleasant. Thank goodness for that. I think I would have totally lost it if he was in pain or "screaming" the whole time.
We got to MCG by about 6:30 AM and went to the ER. We finally got through triage, and they sent us over to the Children's side of the hospital. Thankfully, the doctors were able to get a thin catheter in the hole, and slowly (over about 3 hrs) stretched it back open large enough to place a new Mic-key button. The process hurt Atticus and he would cry whenever they were "stretching" or finally placing the button. It just broke my heart because he was doing his silent scream (due to the vocal chord damage), his eyes full of tears, and he was just reaching up for me to grab him. It was torture....for Atticus and for me. Poor Robbie couldn't even stay in the room. He had to walk in the hallway every time they'd do something to him. He's kinda squeamish when it comes to that sort of thing. That, and he can't stand to watch someone make one his children cry. It instantly infuriates him. So he just excused himself in the hallway so he wouldn't have to watch.
Finally, at about 10:30 AM, Atticus had his G-tube back in, I had given him a little bit of formula because he was STARVING, and we were headed home. Not 15 minutes after we pulled out of the parking garage, poor Atticus puked up everything I fed him. His stomach had been empty for too long, and had just been through too much abuse. We pulled over, got him cleaned up, and finished heading home. He was passed out within another 5 minutes after that. I caught him up on some food and medicine as soon as we got back to the house, and we spent the rest of the day trying to take it easy.
I have to say, Atticus is quite the little tough guy. Other than being really hungry for the rest of the day, he didn't even shed another tear. And by today, he was back to his usual schedule. He just continues to amaze me at how resilient he is. Thanks to everyone who prayed for us yesterday during all the craziness. I'm just SOOOOO thankful that Atticus didn't end up needing another surgery after all. That alone was an enormous lift off my shoulders. I suppose can't be too mad....that was the first time in almost 15 months that we've had to make a trip to the hospital with him for an emergency. Ok, thanks for letting me vent about my stressful day yesterday! As always, keep on prayin' for us!
And that's when I felt the balloon, and totally went into freak mode.
For anyone who's not familiar with a g-tube, the balloon is what is inflated on the inside of the stomach to hold the Mic-key button in place. So when I felt the balloon, there was one imminent question in the front of my mind.....How long has this been out??!
I immediately ran over and turned on the light switch (Poor Robbie!), ripped Atticus' formula-soaked blanket off of him, and pulled him out of the crib and laid him flat on the floor. But once I lifted up his shirt, I saw that the answer to that question was...."for too long". The hole for the Mic-key button was almost completely closed. As I sat there on the floor, swearing and crying and praying, a million thoughts started running through my brain. "Do we go to MCG (which is closer) or to we try to go for MUSC (who was more familiar with his case)? What should I pack for him? Thank God the older kids are spending the night at Nana's.....etc" Then my brain took the course that all mothers' brains take, which is inevitably the worse case scenario. I was sure that this would mean another surgery to replace the Mic-key button, which would mean he'd have to go on a ventilator again, which meant more sedation, etc, etc, etc.
I finally managed to pull myself together after about 5 minutes to get my butt in gear. Robbie and I got dressed, he got the car ready while I packed a bag for Atticus, and we headed out the door towards MCG. Thankfully during all this craziness, Atticus was laughing and squealing, thinking that he was getting to go on an early morning car ride. He wasn't in any pain and was pretty pleasant. Thank goodness for that. I think I would have totally lost it if he was in pain or "screaming" the whole time.
We got to MCG by about 6:30 AM and went to the ER. We finally got through triage, and they sent us over to the Children's side of the hospital. Thankfully, the doctors were able to get a thin catheter in the hole, and slowly (over about 3 hrs) stretched it back open large enough to place a new Mic-key button. The process hurt Atticus and he would cry whenever they were "stretching" or finally placing the button. It just broke my heart because he was doing his silent scream (due to the vocal chord damage), his eyes full of tears, and he was just reaching up for me to grab him. It was torture....for Atticus and for me. Poor Robbie couldn't even stay in the room. He had to walk in the hallway every time they'd do something to him. He's kinda squeamish when it comes to that sort of thing. That, and he can't stand to watch someone make one his children cry. It instantly infuriates him. So he just excused himself in the hallway so he wouldn't have to watch.
Finally, at about 10:30 AM, Atticus had his G-tube back in, I had given him a little bit of formula because he was STARVING, and we were headed home. Not 15 minutes after we pulled out of the parking garage, poor Atticus puked up everything I fed him. His stomach had been empty for too long, and had just been through too much abuse. We pulled over, got him cleaned up, and finished heading home. He was passed out within another 5 minutes after that. I caught him up on some food and medicine as soon as we got back to the house, and we spent the rest of the day trying to take it easy.
I have to say, Atticus is quite the little tough guy. Other than being really hungry for the rest of the day, he didn't even shed another tear. And by today, he was back to his usual schedule. He just continues to amaze me at how resilient he is. Thanks to everyone who prayed for us yesterday during all the craziness. I'm just SOOOOO thankful that Atticus didn't end up needing another surgery after all. That alone was an enormous lift off my shoulders. I suppose can't be too mad....that was the first time in almost 15 months that we've had to make a trip to the hospital with him for an emergency. Ok, thanks for letting me vent about my stressful day yesterday! As always, keep on prayin' for us!
Wednesday, June 22, 2011
Latest update on Atticus
Hello everyone! Atticus is doing great, and is certainly coming into his own! There still isn't too much to report as far as changes to his medical routine. He continues to make progress, his heart function is still holding up well, and he is getting stronger all the time. He is continuing to pull up on everything, and is has even started cruising just a little bit! Oh, and even though he's only 20 months old....he has already begun the dreaded "terrible two" stage.
Ah yes....the terrible twos. It's really a misnomer. All my children have started somewhere around 18 months....and I'm still waiting for my 5 year old to stop! LOL! Atticus, though, seems to have gotten the worst case of it. I suppose understandbly so. He has a more limited vocabulary due to his hearing loss and vocal chord damage, so he tends to get frustrated more quickly. I felt bad that he really had no way to express himself, so I got in contact with the folks from the School for the Deaf & Blind, and we have finally begun learning American Sign Language! We had already begun to learn a few signs with Atticus' speech therapist, but I wanted a more in depth study. I've already resigned myself to the fact that he'll probably need yet another surgery, this time on his vocal chords, at some point in the future to repair them. I also know that this won't happen until after his next heart surgery, since he'll be reintubated for a while, and I don't want him having to be 3 or 4 years old before he's able to have a way to talk. So, ASL it is. Sandy and Gideon have really loved it as well, and Atticus has already started making a few of the signs (although not consistently) for Mommy & Daddy! I'm just hoping he can pick them up fairly easily.
That's really about it for now. He's doing the usual naughty 20 month old stuff....trying to get into the cabinets, destroying anything he can lay his hands on, and getting into everything he's not supposed to! Hehe. He's also becoming more and more aware of everything around him, and exploring constantly. He's getting (slightly) better about eating actual baby food, and is even willing to let me touch my "big people food" to his lips so that he can smell/taste it. He won't eat any, but he'll let you touch it to his tounge so he can taste it. Just saying.....french fries defy all barriers......haha. I'll be sure to update more later....especially if he starts doing something else new! :) As always, please....Keep on prayin'!
Ah yes....the terrible twos. It's really a misnomer. All my children have started somewhere around 18 months....and I'm still waiting for my 5 year old to stop! LOL! Atticus, though, seems to have gotten the worst case of it. I suppose understandbly so. He has a more limited vocabulary due to his hearing loss and vocal chord damage, so he tends to get frustrated more quickly. I felt bad that he really had no way to express himself, so I got in contact with the folks from the School for the Deaf & Blind, and we have finally begun learning American Sign Language! We had already begun to learn a few signs with Atticus' speech therapist, but I wanted a more in depth study. I've already resigned myself to the fact that he'll probably need yet another surgery, this time on his vocal chords, at some point in the future to repair them. I also know that this won't happen until after his next heart surgery, since he'll be reintubated for a while, and I don't want him having to be 3 or 4 years old before he's able to have a way to talk. So, ASL it is. Sandy and Gideon have really loved it as well, and Atticus has already started making a few of the signs (although not consistently) for Mommy & Daddy! I'm just hoping he can pick them up fairly easily.
That's really about it for now. He's doing the usual naughty 20 month old stuff....trying to get into the cabinets, destroying anything he can lay his hands on, and getting into everything he's not supposed to! Hehe. He's also becoming more and more aware of everything around him, and exploring constantly. He's getting (slightly) better about eating actual baby food, and is even willing to let me touch my "big people food" to his lips so that he can smell/taste it. He won't eat any, but he'll let you touch it to his tounge so he can taste it. Just saying.....french fries defy all barriers......haha. I'll be sure to update more later....especially if he starts doing something else new! :) As always, please....Keep on prayin'!
Monday, May 30, 2011
A very Happy Memorial Day!
Happy Memorial Day everyone! Just checking in with what seems to be monthly updates. Not too much has happened since my last post, but I'll try to remember to include everything that has happened. Atticus is continuing to do really well, and is just crawling all over the place. He even gave me a special present today.....he stood up ALL BY HIMSELF!!! Hooooooorrrrraaaaaay!! He even managed to do it a couple of different times! That makes me one happy mamma!
Not too much has changed as far as the doctors all go. His cardiologist continues to be happy with his progress, and is still waiting for the 30lbs mark as the indicator for the next surgery. On a brighter note, we just visited his pulmonologist last week, and he said he thinks we can start trying to wean Atticus down on his O2 levels at night, with the eventual goal of getting him off O2. (yay!) No real changes other than that.
Atticus has also been doing really well on his feedings, and is starting to be more consistent with eating more than just a few bites, and we've even managed to get down a whole jar of baby food!! Whoo hoo!! He's also learning mores signs and is getting better at using them when he wants something. He's just getting to be such a big boy! When he stands, its amazing how tall he really is. I'm so used to seeing him in the sitting position, or crawling, that when I see him stand it just shocks me to see how tall he's actually gotten! Thanks for continuing to keep us in your prayers!
Not too much has changed as far as the doctors all go. His cardiologist continues to be happy with his progress, and is still waiting for the 30lbs mark as the indicator for the next surgery. On a brighter note, we just visited his pulmonologist last week, and he said he thinks we can start trying to wean Atticus down on his O2 levels at night, with the eventual goal of getting him off O2. (yay!) No real changes other than that.
Atticus has also been doing really well on his feedings, and is starting to be more consistent with eating more than just a few bites, and we've even managed to get down a whole jar of baby food!! Whoo hoo!! He's also learning mores signs and is getting better at using them when he wants something. He's just getting to be such a big boy! When he stands, its amazing how tall he really is. I'm so used to seeing him in the sitting position, or crawling, that when I see him stand it just shocks me to see how tall he's actually gotten! Thanks for continuing to keep us in your prayers!
Wednesday, April 20, 2011
So I've been a little slack....
It seems like I always start my posts with an apology for not posting sooner, but sorry it's been a little over a month since my last post. What's my excuse? Well, I have been a little busy....but mostly, I guess I was just a little slack. So I'll try my best to catch everyone up to speed.
We've had some little accomplishments since my last post. Most notably, Atticus has finally started waving "bye-bye", and he's gotten MUCH better at crawling! He still refuses to extend his arms, but he can really move on knees and forearms. Blink and he's half way across the house! He was a little resistant at first to crawling across the vinyl flooring in the kitchen, mostly, I think, because it was so much colder than the carpet. But that's not a problem any more! ;) Now to teach him to stay out of the cabinets! He likes opening and slamming them closed because he can actually hear it, even if he's lost his hearing aids along the journey somewhere. Robbie and I keep telling him "no" and shaking our heads, but he's a comedian. He crawled in the kitchen earlier while I was cooking dinner, sat in front of one of the cabinets next to me, looked up at me, smiled, shook his head "no", and proceeded to slam the cabinet door! He just thinks everything is a game. Yep. Definitely his father's son.
We've also had another round of visits to the various and sundry specialists, so I'll run down the list. We had a great visit with Dr Williams (cardiology) at the beginning of the month. Atticus' oxygen sats we staying in the mid 80s. He weighs 24 lbs 13 oz and was 32 inches long. So only a 7 oz weight gain in the last 2 months, but Dr Williams was still really happy with him. He didn't do another echo-cardiogram this time since he'd just had one the visit before, but listened to his chest and was satisfied. He said he's betting that since Atticus' weight gain has slowed, now that he's becoming more mobile, it'll probably be a little longer before Atticus is big enough for the Fontan, assuming that his heart function remains good. That's news that suits me just fine. Dr Williams was so happy with him that we get to go 3 months this time before we have to go back!! Yay! However, this is at the same time a teeny bit scary since I use those visits to reassure myself that he's really doing as well as I think he is......but I think saving the gas money driving an hour each way is well worth it. :)
We also had a great visit just last week with Dr Kinsman (neurology). Dr Kinsman always makes me smile. He's a bow tie doctor, with metal round rimmed glasses, slightly balding, but very kind. He's always happy to see Atticus, and remembers him without even having to consult his chart. Let's face it. It's a unique name and he's a unique kid. He always seems just genuinely impressed with how well Atticus is doing cognitively, and remarks how he had such a "massive brain bleed" (which he added was on the left side of the brain this trip), and how great his social skills are, etc. In fact, Dr Kinsman was so happy with Atticus on this trip that he said he didn't see any reason for us to have to come back! He added that he'd only want to have us come back for one more visit and probably EEG right before Atticus has his Fontan (likely the same time as the pre-op Cath), so they could have a base reading before surgery. This is fantastic news!! Seventeen months ago, we didn't even know if these brain bleeds would kill him, let alone any neurological complications (like the seizures) that might occur as a consequence of them. Now, you're telling me that not only has he remained seizure-free, but we're actually CLEARED from neurology...............it's why he's my Amazing Atticus. He's God's miracle to me.
And finally, we had an appointment with ENT for Atticus' vocal chords. This visit was basically a waste of time. There. I said it. I like Dr Driscolo, but it almost seemed like he didn't even know why we were there. Not much has changed. Obviously, Atticus still can't talk, so we know his vocal chords aren't completely healed. Even if they decide to do corrective surgery, it certainly wouldn't be until after his Fontan because they're just gonna have to shove a tube right back down his throat again. Like I said, I like Dr Driscolo because at least he realizes there's not point in putting Atticus through an extra surgery. The only good thing (I guess) that came out of this visit was that Dr Driscolo wants us to have another swallow study done. It's been a little over a year since his last one. Thankfully he just gave me an order for it so that we don't have to drive all the way across the state to have it done. He just circled the fax number and asked that wherever we have it done to be sure to send him the results.
Well, I think that's really about it. He continues to grow stronger and amaze me more and more each day. His personality is starting to bloom, and he is certainly beginning the challenging stage of the "terrible twos" which is uniquely different from his older siblings because of his hearing loss. His language skills are getting better, and he's even getting better at signing and using his hands. He's such an awesome little guy. As always, keep on prayin' for us!
We've had some little accomplishments since my last post. Most notably, Atticus has finally started waving "bye-bye", and he's gotten MUCH better at crawling! He still refuses to extend his arms, but he can really move on knees and forearms. Blink and he's half way across the house! He was a little resistant at first to crawling across the vinyl flooring in the kitchen, mostly, I think, because it was so much colder than the carpet. But that's not a problem any more! ;) Now to teach him to stay out of the cabinets! He likes opening and slamming them closed because he can actually hear it, even if he's lost his hearing aids along the journey somewhere. Robbie and I keep telling him "no" and shaking our heads, but he's a comedian. He crawled in the kitchen earlier while I was cooking dinner, sat in front of one of the cabinets next to me, looked up at me, smiled, shook his head "no", and proceeded to slam the cabinet door! He just thinks everything is a game. Yep. Definitely his father's son.
We've also had another round of visits to the various and sundry specialists, so I'll run down the list. We had a great visit with Dr Williams (cardiology) at the beginning of the month. Atticus' oxygen sats we staying in the mid 80s. He weighs 24 lbs 13 oz and was 32 inches long. So only a 7 oz weight gain in the last 2 months, but Dr Williams was still really happy with him. He didn't do another echo-cardiogram this time since he'd just had one the visit before, but listened to his chest and was satisfied. He said he's betting that since Atticus' weight gain has slowed, now that he's becoming more mobile, it'll probably be a little longer before Atticus is big enough for the Fontan, assuming that his heart function remains good. That's news that suits me just fine. Dr Williams was so happy with him that we get to go 3 months this time before we have to go back!! Yay! However, this is at the same time a teeny bit scary since I use those visits to reassure myself that he's really doing as well as I think he is......but I think saving the gas money driving an hour each way is well worth it. :)
We also had a great visit just last week with Dr Kinsman (neurology). Dr Kinsman always makes me smile. He's a bow tie doctor, with metal round rimmed glasses, slightly balding, but very kind. He's always happy to see Atticus, and remembers him without even having to consult his chart. Let's face it. It's a unique name and he's a unique kid. He always seems just genuinely impressed with how well Atticus is doing cognitively, and remarks how he had such a "massive brain bleed" (which he added was on the left side of the brain this trip), and how great his social skills are, etc. In fact, Dr Kinsman was so happy with Atticus on this trip that he said he didn't see any reason for us to have to come back! He added that he'd only want to have us come back for one more visit and probably EEG right before Atticus has his Fontan (likely the same time as the pre-op Cath), so they could have a base reading before surgery. This is fantastic news!! Seventeen months ago, we didn't even know if these brain bleeds would kill him, let alone any neurological complications (like the seizures) that might occur as a consequence of them. Now, you're telling me that not only has he remained seizure-free, but we're actually CLEARED from neurology...............it's why he's my Amazing Atticus. He's God's miracle to me.
And finally, we had an appointment with ENT for Atticus' vocal chords. This visit was basically a waste of time. There. I said it. I like Dr Driscolo, but it almost seemed like he didn't even know why we were there. Not much has changed. Obviously, Atticus still can't talk, so we know his vocal chords aren't completely healed. Even if they decide to do corrective surgery, it certainly wouldn't be until after his Fontan because they're just gonna have to shove a tube right back down his throat again. Like I said, I like Dr Driscolo because at least he realizes there's not point in putting Atticus through an extra surgery. The only good thing (I guess) that came out of this visit was that Dr Driscolo wants us to have another swallow study done. It's been a little over a year since his last one. Thankfully he just gave me an order for it so that we don't have to drive all the way across the state to have it done. He just circled the fax number and asked that wherever we have it done to be sure to send him the results.
Well, I think that's really about it. He continues to grow stronger and amaze me more and more each day. His personality is starting to bloom, and he is certainly beginning the challenging stage of the "terrible twos" which is uniquely different from his older siblings because of his hearing loss. His language skills are getting better, and he's even getting better at signing and using his hands. He's such an awesome little guy. As always, keep on prayin' for us!
Tuesday, March 15, 2011
One year later.....
I'm SO excited today, even though its cloudy and gray outside. Why? Because today, Atticus has officially been home from the hospital for a whole year!!! I can hardly believe it! Wow, I have a feeling this is going to turn into a long and wordy post...so consider this fair warning! :) So much has happened in the past year, but two big things that I can say that have NOT happened in this past year, is no visits to the ER and no hospitalizations!! Hooray! That doesn't mean we haven't fought with colds/flu during this year, but we have at least managed to stay healthy enough to remain home, with only trips to the pediatrician's office for meds to fight off the crud.
When I was planning on what to write during this post, I figured it would be nice to recap some of the things Atticus has accomplished over the past year, other than just staying out of the hospital. So here goes.....one year ago today, Atticus couldn't even hold his head up on his own--even though he was almost 6 months old. He had basically no muscles tone at all. Today, I am proud to say that Atticus can most certainly hold his own head, and he can also roll all over the place, he can sit up unaided for indefinite periods of time, he can also pull up on his knees, and is even beginning to "inch-worm" crawl!! He's also gotten leg braces during this year, and he's getting better at be able to tolerate standing for longer periods of time, though he still has to be aided in doing so. He's figured out that if he stands, he can see more of the room, so he trying a little harder now that he sees what benefits it offers! :)
A year ago today, Atticus could reach out for things, but he couldn't grip anything, much less have any other sort of hand/eye coordination. Today, Atticus can hold an object in each hand at the same time and bang them together, the can bring toys to his mouth to chew on, he can reach across his body to pick up an object in both directions, he can catch himself from falling/tipping over, he can pull an object closer to himself, and he can mimic "pat-a-cake", etc! He's becoming more and more skilled at using his hands, and he's even learning how to turn the pages in a book, with a little help separating the pages.
A year ago today, we had no idea what sort of damage had been done to Atticus' brain due to the two brain bleeds. We didn't know if he would continue to have seizures, if he would develop cerebral palsy, or what it would mean for his developmental capabilities. I am so grateful to God for what I have seen Him do for Atticus in the past year. Many things may still not show for years to come, but as of today, he can growl and squeal in various pitches to express his mood or "talk" (he still can't make "normal" baby sounds because his vocal chords still haven't healed completely yet), he has problem solving skills, he is becoming more aware of cause/effect, and can even use sign language to express "more", "pat-a-cake", "all done", "no" and "yes" with his head, and even invented one for "more pat-a-cake"! LOL! He can also recognize the signs for "ball", "stop", "no", "book", "hello", and "bye-bye". He's able to predict the next step in a sequence, such as when we put on his leg braces. After putting on his sock, he'll lift his leg to put on the brace, and then lift the same leg again to put on his shoe before going to the next foot. I'm also extremely grateful that God has kept Atticus from having any more seizures since the last bleed, and we've even been able to wean off the Keppra, so we're not even on anti-seizure meds anymore!
A year ago today, we also had recently discovered that Atticus had hearing loss, but we didn't know how severe it was until a few months later. We discovered that he had moderate hearing loss in both ears, but that it would be manageable with hearing aids, for which, again, we were VERY thankful. In this past year, Atticus has received hearing aids, and the last time we visited the audiologist, we discovered that he actually had more low frequency hearing than we originally thought! Not only that, but because mommy has been a good girl and made sure that Atticus wore his hearing aids, he also has better than age appropriate sound awareness! Yay! Once Atticus received his hearing aids, his little world exploded! It was then that he truly came out of his shell and began to be curious about the world around him.
Also, a year ago today, Atticus came home on constant O2, which was at a low rate of .5L. Today, I am happy to say that Atticus only has to wear his cannula at night, and it's only on a rate of .25L! I'm so thankful that his Pulmonary Hypertension has improved as well as it has. I remember when he first came home, he had a rattling, raspy wheeze and cough that scared anyone who heard it. Now, his lungs sound clear, though he still has a tendency to breathe hard and fast when he's excited or overexerts himself. I'm also grateful that he's managed to get off his cannula during the day, because it was becoming quite the task to try to keep him untangled from his air tubes as he became more mobile!
Another huge milestone for me personally is the fact that Atticus has developed in his eating. When Atticus first came home from the hospital, he threw up all the time! I would literally have a basket a day of laundry just for Atticus of clothes, toys, and blankets. If he got mad about something, he would throw up. If he didn't want to do what the physical therapist was trying make him do, he would throw up on her. If I didn't "burp" him 3 times a feeding, he would throw back up almost everything you put in him. And no matter what, if you tried feeding him regular baby food, he was going to throw up. I cannot even count the number of tears I have spent over thrown up/spilled formula. But sometimes God works in mysterious ways. Eventually one day, Atticus suddenly stopped throwing up. It was like someone had just turned off a switch. I think it was one of my happiest days since Atticus came home! He had finally developed enough core muscles that he could push out extra gas with nice robust burps/farts, and he could "cry" without forcing everything out of his stomach! As you can imagine, all that throwing up has cause him to have a BIG oral aversion. After a particularly nasty virus that came with a sore throat, I was attempting to feed Atticus some baby food. I was fully prepared for the usual round and round of trying to sneak it in his mouth, him grimacing, and eventually...you guessed it...throwing up from pitching a fit. I decided to try some Stage 2 foods because, heck, they're really not that different from Stage 1. It was Pumpkin & Pears...I'll never forget. I snuck in the first bite, and he grimaced as he swallowed. Then I snuck in a second bite, and he didn't grimace quite so much. Then, as I reached to sneak the third bite, Atticus leaned forward, opened his mouth, and took the bite with no argument!! *begin the hallelujah chorus, the clouds have parted, and I see a ray of light shining down!* He ended up eating 1/2 the jar before the made the sign for "all done"--which was also a first--and refused to take another bite. He was too tired. I couldn't have been prouder! I think the food felt good to his throat because it was so sore, and for the first time, he associated swallowing with something pleasurable! Now, I'd love to say that was the turning point and now he's a champion feeder, but that hasn't happened...yet. Some days he's up for the challenge more than others, but he's starting to fight me less and less. So I'll count that as a victory!
Ok, this is turning into a really long post....I did warn you. So I guess I'll wrap it up. I want to end by saying how very thankful I am for everyone that called, visited, sent cards, gave to us in so many ways, that sent healing thoughts our way, and especially for those that prayed. I could have never imagined when this journey began, how many lives Atticus would touch. We literally had people praying for us all over the world. Through friends and family telling their friends and families, we heard of people praying for us that were Jewish, Catholic, Methodist, Baptist, Church of Christ, Lutheran, etc in places like Georgia, South Carolina, North Carolina, New York, California, Mississippi, even London and Tuscany! It has truly been a humbling experience. We have always, and will always continue to trust that God has a plan for us and a plan for Atticus, no matter what difficulties we may face. And of course, I'd ask that you keep checking in on us here from time to time, and as always, keep on prayin'! :)
When I was planning on what to write during this post, I figured it would be nice to recap some of the things Atticus has accomplished over the past year, other than just staying out of the hospital. So here goes.....one year ago today, Atticus couldn't even hold his head up on his own--even though he was almost 6 months old. He had basically no muscles tone at all. Today, I am proud to say that Atticus can most certainly hold his own head, and he can also roll all over the place, he can sit up unaided for indefinite periods of time, he can also pull up on his knees, and is even beginning to "inch-worm" crawl!! He's also gotten leg braces during this year, and he's getting better at be able to tolerate standing for longer periods of time, though he still has to be aided in doing so. He's figured out that if he stands, he can see more of the room, so he trying a little harder now that he sees what benefits it offers! :)
A year ago today, Atticus could reach out for things, but he couldn't grip anything, much less have any other sort of hand/eye coordination. Today, Atticus can hold an object in each hand at the same time and bang them together, the can bring toys to his mouth to chew on, he can reach across his body to pick up an object in both directions, he can catch himself from falling/tipping over, he can pull an object closer to himself, and he can mimic "pat-a-cake", etc! He's becoming more and more skilled at using his hands, and he's even learning how to turn the pages in a book, with a little help separating the pages.
A year ago today, we had no idea what sort of damage had been done to Atticus' brain due to the two brain bleeds. We didn't know if he would continue to have seizures, if he would develop cerebral palsy, or what it would mean for his developmental capabilities. I am so grateful to God for what I have seen Him do for Atticus in the past year. Many things may still not show for years to come, but as of today, he can growl and squeal in various pitches to express his mood or "talk" (he still can't make "normal" baby sounds because his vocal chords still haven't healed completely yet), he has problem solving skills, he is becoming more aware of cause/effect, and can even use sign language to express "more", "pat-a-cake", "all done", "no" and "yes" with his head, and even invented one for "more pat-a-cake"! LOL! He can also recognize the signs for "ball", "stop", "no", "book", "hello", and "bye-bye". He's able to predict the next step in a sequence, such as when we put on his leg braces. After putting on his sock, he'll lift his leg to put on the brace, and then lift the same leg again to put on his shoe before going to the next foot. I'm also extremely grateful that God has kept Atticus from having any more seizures since the last bleed, and we've even been able to wean off the Keppra, so we're not even on anti-seizure meds anymore!
A year ago today, we also had recently discovered that Atticus had hearing loss, but we didn't know how severe it was until a few months later. We discovered that he had moderate hearing loss in both ears, but that it would be manageable with hearing aids, for which, again, we were VERY thankful. In this past year, Atticus has received hearing aids, and the last time we visited the audiologist, we discovered that he actually had more low frequency hearing than we originally thought! Not only that, but because mommy has been a good girl and made sure that Atticus wore his hearing aids, he also has better than age appropriate sound awareness! Yay! Once Atticus received his hearing aids, his little world exploded! It was then that he truly came out of his shell and began to be curious about the world around him.
Also, a year ago today, Atticus came home on constant O2, which was at a low rate of .5L. Today, I am happy to say that Atticus only has to wear his cannula at night, and it's only on a rate of .25L! I'm so thankful that his Pulmonary Hypertension has improved as well as it has. I remember when he first came home, he had a rattling, raspy wheeze and cough that scared anyone who heard it. Now, his lungs sound clear, though he still has a tendency to breathe hard and fast when he's excited or overexerts himself. I'm also grateful that he's managed to get off his cannula during the day, because it was becoming quite the task to try to keep him untangled from his air tubes as he became more mobile!
Another huge milestone for me personally is the fact that Atticus has developed in his eating. When Atticus first came home from the hospital, he threw up all the time! I would literally have a basket a day of laundry just for Atticus of clothes, toys, and blankets. If he got mad about something, he would throw up. If he didn't want to do what the physical therapist was trying make him do, he would throw up on her. If I didn't "burp" him 3 times a feeding, he would throw back up almost everything you put in him. And no matter what, if you tried feeding him regular baby food, he was going to throw up. I cannot even count the number of tears I have spent over thrown up/spilled formula. But sometimes God works in mysterious ways. Eventually one day, Atticus suddenly stopped throwing up. It was like someone had just turned off a switch. I think it was one of my happiest days since Atticus came home! He had finally developed enough core muscles that he could push out extra gas with nice robust burps/farts, and he could "cry" without forcing everything out of his stomach! As you can imagine, all that throwing up has cause him to have a BIG oral aversion. After a particularly nasty virus that came with a sore throat, I was attempting to feed Atticus some baby food. I was fully prepared for the usual round and round of trying to sneak it in his mouth, him grimacing, and eventually...you guessed it...throwing up from pitching a fit. I decided to try some Stage 2 foods because, heck, they're really not that different from Stage 1. It was Pumpkin & Pears...I'll never forget. I snuck in the first bite, and he grimaced as he swallowed. Then I snuck in a second bite, and he didn't grimace quite so much. Then, as I reached to sneak the third bite, Atticus leaned forward, opened his mouth, and took the bite with no argument!! *begin the hallelujah chorus, the clouds have parted, and I see a ray of light shining down!* He ended up eating 1/2 the jar before the made the sign for "all done"--which was also a first--and refused to take another bite. He was too tired. I couldn't have been prouder! I think the food felt good to his throat because it was so sore, and for the first time, he associated swallowing with something pleasurable! Now, I'd love to say that was the turning point and now he's a champion feeder, but that hasn't happened...yet. Some days he's up for the challenge more than others, but he's starting to fight me less and less. So I'll count that as a victory!
Ok, this is turning into a really long post....I did warn you. So I guess I'll wrap it up. I want to end by saying how very thankful I am for everyone that called, visited, sent cards, gave to us in so many ways, that sent healing thoughts our way, and especially for those that prayed. I could have never imagined when this journey began, how many lives Atticus would touch. We literally had people praying for us all over the world. Through friends and family telling their friends and families, we heard of people praying for us that were Jewish, Catholic, Methodist, Baptist, Church of Christ, Lutheran, etc in places like Georgia, South Carolina, North Carolina, New York, California, Mississippi, even London and Tuscany! It has truly been a humbling experience. We have always, and will always continue to trust that God has a plan for us and a plan for Atticus, no matter what difficulties we may face. And of course, I'd ask that you keep checking in on us here from time to time, and as always, keep on prayin'! :)
Tuesday, February 15, 2011
Awesome dinner with Atticus!!
I have some exciting news about Atticus!! Well, really two exciting new developments! First, I'm proud to say that Atticus has learned how to pull up on his knees! He's been reaching for the TV remote on the coffee table, and taking everything off that stands in his way (including Robbie's laptop....oops!) to be able to reach it. I'm so proud of him! However, this also means that now I have to fight with that (expletive of choice) crib again to be able to lower his mattress! The last time I had to do anything to it was when I assembled it almost a year ago when Atticus was getting ready to come home from the hospital for the first time. The side rails kept falling over, the middle support kept bending when rails fell over, etc....and it always seemed to land on me! I was literally black and blue by the time I finished putting that crib together. I had cried, I had been beaten badly, and I hurt all over, but I finally put it together!!! Oh well, maybe this will be the last time I'll have to mess with it, and Atticus can go straight to a toddler bed after this! ;)
Ok, second big development happened earlier this evening. Atticus, of course, eats through his G-tube, but we still make attempts at feeding by mouth with Stage 1 or 2 baby foods. Generally speaking, these sessions don't go well. Most of the time, you give 1 or 2 spoonfuls, and he's had enough. If you try to give him more than that, he'll throw himself into such a fit that he'll make himself throw up everywhere. Not a pretty sight. And totally not the type of behavior that I want Atticus to associate with eating, so we generally stop. Every once in a great blue moon, I might be able to get about 1/3 of a jar down. But generally, I have to trick him into opening his mouth, and he grimaces whenever he swallows. So recently, I've been doing some research through a few other Heart Mamas' blogs that have older heart kids and have "been there, done that". One of the tips that I picked up was to put some of the food on Atticus' tray and let him play in it while trying to feed him. This hasn't been easy for me because I'm totally OCD, so I have to make sure that I strip him down to his pants, and that I'm able to give him a bath right away, but this has certainly helped A LOT! If I let him play in the food for a few minutes before I attempt to feed him, then he's been getting to where he doesn't grimace so much when I put the food in his mouth. So tonight, I decided to give him something new, and we had some Stage 2 Pumpkin with Pears while I ate my dinner. I took a few bites of my food while he watched me, then I spooned him up a bite and he LOVED it!!!! It was the first time ever he actually leaned forward towards the spoon and willingly opened his mouth to let me feed him! And he only grimaced the first time or two, but then started eating almost like any other "normal" baby!!! Hooray!!! It's something so small, but I feel as great as someone who's finished their first marathon! LOL! One mini hurdle overcome in the road to getting off the G-tube!! Thank you God! I was also amazed that he actually ate about 1/2 the jar before he started getting tired and actually attempted to make the sign for "All Done"! (It done by wiping your hands back and forth-like dusting crumbs off your fingers.....his was more of a clap/swipe two times, but I knew what he meant!!) After he had signed "all done", he refused to take anymore bites.
Dinner with Atticus has just blown my mind tonight! It seems like after almost a year of trying to get him to eat by mouth, we've finally taken the first "real" step towards taking all our meals by mouth. It has certainly given me some renewed hope exactly when I was beginning to feel like it would never happen! Thank you Lord. You always know exactly what I need. :) It has also been exciting this week to notice Atticus attempting to make some of the baby signs that the Speech therapist and I have been teaching him. We decided to go ahead and begin with some Baby Sign Language because 1) of his hearing loss and 2) because his vocal chords still haven't healed completely. It's like finally getting to talk to him, and knowing that he understands; that he's beginning to make the association between speech and its meaning. Very cool stuff. As always, I'll ask everyone to keep sending those well wishes, good thoughts, and keep on prayin'!!
Ok, second big development happened earlier this evening. Atticus, of course, eats through his G-tube, but we still make attempts at feeding by mouth with Stage 1 or 2 baby foods. Generally speaking, these sessions don't go well. Most of the time, you give 1 or 2 spoonfuls, and he's had enough. If you try to give him more than that, he'll throw himself into such a fit that he'll make himself throw up everywhere. Not a pretty sight. And totally not the type of behavior that I want Atticus to associate with eating, so we generally stop. Every once in a great blue moon, I might be able to get about 1/3 of a jar down. But generally, I have to trick him into opening his mouth, and he grimaces whenever he swallows. So recently, I've been doing some research through a few other Heart Mamas' blogs that have older heart kids and have "been there, done that". One of the tips that I picked up was to put some of the food on Atticus' tray and let him play in it while trying to feed him. This hasn't been easy for me because I'm totally OCD, so I have to make sure that I strip him down to his pants, and that I'm able to give him a bath right away, but this has certainly helped A LOT! If I let him play in the food for a few minutes before I attempt to feed him, then he's been getting to where he doesn't grimace so much when I put the food in his mouth. So tonight, I decided to give him something new, and we had some Stage 2 Pumpkin with Pears while I ate my dinner. I took a few bites of my food while he watched me, then I spooned him up a bite and he LOVED it!!!! It was the first time ever he actually leaned forward towards the spoon and willingly opened his mouth to let me feed him! And he only grimaced the first time or two, but then started eating almost like any other "normal" baby!!! Hooray!!! It's something so small, but I feel as great as someone who's finished their first marathon! LOL! One mini hurdle overcome in the road to getting off the G-tube!! Thank you God! I was also amazed that he actually ate about 1/2 the jar before he started getting tired and actually attempted to make the sign for "All Done"! (It done by wiping your hands back and forth-like dusting crumbs off your fingers.....his was more of a clap/swipe two times, but I knew what he meant!!) After he had signed "all done", he refused to take anymore bites.
Dinner with Atticus has just blown my mind tonight! It seems like after almost a year of trying to get him to eat by mouth, we've finally taken the first "real" step towards taking all our meals by mouth. It has certainly given me some renewed hope exactly when I was beginning to feel like it would never happen! Thank you Lord. You always know exactly what I need. :) It has also been exciting this week to notice Atticus attempting to make some of the baby signs that the Speech therapist and I have been teaching him. We decided to go ahead and begin with some Baby Sign Language because 1) of his hearing loss and 2) because his vocal chords still haven't healed completely. It's like finally getting to talk to him, and knowing that he understands; that he's beginning to make the association between speech and its meaning. Very cool stuff. As always, I'll ask everyone to keep sending those well wishes, good thoughts, and keep on prayin'!!
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