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'!!
Tuesday, August 24, 2010
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'!
Monday, June 7, 2010
A very long post....
Hello everyone!
Well, it's been a little while since my last Atticus update, so I just wanted to let everyone know what's been going on lately. First, Atticus turned 8 months old yesterday!! Where has the time gone?! It doesn't seem like he's been home for 2 1/2 months already...and it certainly doesn't seem like it's been 8 months ago since we began Atticus' journey with him. I am so thankful that I have had this long to spend with him, and that he is doing so incredibly well; especially after such a rough 1st month!
Well, what have we been up to lately? On this past Tuesday, June 1st, we went to Charleston to have a check-up with the folk from Peds Surgery that placed Atticus' G-tube. It was just basically showing me how to change his button (which I already knew how to do thanks to Wanda!) and to make sure everything looked good, see if we had any questions, etc. They were happy with everything, so he got a slightly bigger size button, and that was it. We also stopped by the PCICU to say hello to all our lovely nurses and docs--who were very happy to see that Atticus is doing so well, and getting so big! He's up to about 18.5 lbs and 28.5 inches long!!! My big boy!
Next, on Wednesday, we went to Columbia to visit Dr Williams with cardiology. Dr Williams was happy with the way Atticus' heart sounded, and decided not to do another echocardiogram because he said the poor boy has had to sit through enough of them. Plus, with him being so far out post-operatively; there was really no point. He didn't make any changes to Atticus' meds, and we'll be back to see him in about 2 months.
Then, on Thursday, we went back to Columbia to visit with Dr Brown from pulmonology. He was also very happy with Atticus. He said that he could tell a definite improvement in the sound of Atticus' lungs. He said it didn't sound like he was wheezing or rattling as much when he took a breath. He also decided to keep things as is on his meds, because he does still have a lot of healing to do with the Pulmonary Hypertension. He was so happy with his improvement, though, that we don't even have to back to visit him for another 4 months!! :) (Which makes my gas tank happy! LOL)
We've also been a few times to visit with Atticus regular pediatrician, Dr Goldberg. She is happy with the way Atticus is progressing, both physically and developmentally. She's been trying to slowly increase his feeds, and we've been continuing to try to feed Atticus at least a few bites of food by mouth. Sometimes he does better than others, but we keep trying!
Atticus has also starting receiving his Physical therapy, Occupational therapy, and speech therapy. PT works on his gross motor skills, OT works on his fine motor skills, and Speech works on his mouth...including working on helping him learn how to swallow, coordinate his tongue, etc. He has a lot of work to do to catch up on all areas of his development, but all the ladies have been fairly impressed with his attitude, his abilities, and his personality. We still have to follow up with his audiologist, Dr Little, to see what exactly she wants to do now that we know Atticus has moderate hearing loss in both ears, but she has said that whatever we decide; she wants it in place by the time he's 9 months old.
We'll have another 2 appointments in Charleston this upcoming Tuesday. One is for the high risk assesment, which just checks on his developmental delays, etc. And the other is another barium swallow study to see how he's progressing with the healing of his vocal chords and his ability to coordinate his swallowing. (Hint, hint to all my ladies in the PC!) I'll try to remember to update how those go sometime next week.
And finally, Atticus and the rest of us are adjusting nicely to being home. He's so alert and active; he continues to amaze me everyday. He's always so happy, no matter what he's going through, he is someone to learn from. He can just be choking and gaging during one of his feeds, but as soon as he's settled out; he's back to smiling and laughing, just like nothing happened. He's also cutting teeth right now (the bottom front two are already in!), and he's really not fussy or cranky. He gnaws on his fingers like crazy, but he's still always happy. Even when getting more than one at a time!! It's almost like he's saying, "Pain? This isn't pain...just annoying!" :)
I thank God each and every day for the gift that is Atticus. Not only for him being my son and sparing his life, but also for all the valuable lessons that I've learned along the way. I've drawn so much closer to God, and I've learned that He really is always in control. I'm continually amazed at the ways that He continues to bless us each day. Just as an example....I really needed to go to the grocery store the past few days, but I just haven't found the time with Atticus and all the appointments we've had this week. Also, we've been a little short on money because I've had to travel so much, and we've had to get a new faucet, service the air conditioner, etc. Well, one of the ladies that comes to Publix all the time, whom Valerie calls one of her "coupon ladies", came in to find out how Atticus had been doing since coming home. She brought Valerie a literal trunk full of groceries for us! Not only did she have food, but 2 whole bags of various non-grocery items like tissues, toilet paper, ziploc bags, etc that I had needed as well! I have never met this lady, and she had no way of knowing that I needed these things. But God bless her! It's just awesome how God works in our daily lives!
Thanks for everyone's continued prayers! We still have a long road ahead. I'll try to remember to update a little more regularly! As always, keep on prayin'!
Well, it's been a little while since my last Atticus update, so I just wanted to let everyone know what's been going on lately. First, Atticus turned 8 months old yesterday!! Where has the time gone?! It doesn't seem like he's been home for 2 1/2 months already...and it certainly doesn't seem like it's been 8 months ago since we began Atticus' journey with him. I am so thankful that I have had this long to spend with him, and that he is doing so incredibly well; especially after such a rough 1st month!
Well, what have we been up to lately? On this past Tuesday, June 1st, we went to Charleston to have a check-up with the folk from Peds Surgery that placed Atticus' G-tube. It was just basically showing me how to change his button (which I already knew how to do thanks to Wanda!) and to make sure everything looked good, see if we had any questions, etc. They were happy with everything, so he got a slightly bigger size button, and that was it. We also stopped by the PCICU to say hello to all our lovely nurses and docs--who were very happy to see that Atticus is doing so well, and getting so big! He's up to about 18.5 lbs and 28.5 inches long!!! My big boy!
Next, on Wednesday, we went to Columbia to visit Dr Williams with cardiology. Dr Williams was happy with the way Atticus' heart sounded, and decided not to do another echocardiogram because he said the poor boy has had to sit through enough of them. Plus, with him being so far out post-operatively; there was really no point. He didn't make any changes to Atticus' meds, and we'll be back to see him in about 2 months.
Then, on Thursday, we went back to Columbia to visit with Dr Brown from pulmonology. He was also very happy with Atticus. He said that he could tell a definite improvement in the sound of Atticus' lungs. He said it didn't sound like he was wheezing or rattling as much when he took a breath. He also decided to keep things as is on his meds, because he does still have a lot of healing to do with the Pulmonary Hypertension. He was so happy with his improvement, though, that we don't even have to back to visit him for another 4 months!! :) (Which makes my gas tank happy! LOL)
We've also been a few times to visit with Atticus regular pediatrician, Dr Goldberg. She is happy with the way Atticus is progressing, both physically and developmentally. She's been trying to slowly increase his feeds, and we've been continuing to try to feed Atticus at least a few bites of food by mouth. Sometimes he does better than others, but we keep trying!
Atticus has also starting receiving his Physical therapy, Occupational therapy, and speech therapy. PT works on his gross motor skills, OT works on his fine motor skills, and Speech works on his mouth...including working on helping him learn how to swallow, coordinate his tongue, etc. He has a lot of work to do to catch up on all areas of his development, but all the ladies have been fairly impressed with his attitude, his abilities, and his personality. We still have to follow up with his audiologist, Dr Little, to see what exactly she wants to do now that we know Atticus has moderate hearing loss in both ears, but she has said that whatever we decide; she wants it in place by the time he's 9 months old.
We'll have another 2 appointments in Charleston this upcoming Tuesday. One is for the high risk assesment, which just checks on his developmental delays, etc. And the other is another barium swallow study to see how he's progressing with the healing of his vocal chords and his ability to coordinate his swallowing. (Hint, hint to all my ladies in the PC!) I'll try to remember to update how those go sometime next week.
And finally, Atticus and the rest of us are adjusting nicely to being home. He's so alert and active; he continues to amaze me everyday. He's always so happy, no matter what he's going through, he is someone to learn from. He can just be choking and gaging during one of his feeds, but as soon as he's settled out; he's back to smiling and laughing, just like nothing happened. He's also cutting teeth right now (the bottom front two are already in!), and he's really not fussy or cranky. He gnaws on his fingers like crazy, but he's still always happy. Even when getting more than one at a time!! It's almost like he's saying, "Pain? This isn't pain...just annoying!" :)
I thank God each and every day for the gift that is Atticus. Not only for him being my son and sparing his life, but also for all the valuable lessons that I've learned along the way. I've drawn so much closer to God, and I've learned that He really is always in control. I'm continually amazed at the ways that He continues to bless us each day. Just as an example....I really needed to go to the grocery store the past few days, but I just haven't found the time with Atticus and all the appointments we've had this week. Also, we've been a little short on money because I've had to travel so much, and we've had to get a new faucet, service the air conditioner, etc. Well, one of the ladies that comes to Publix all the time, whom Valerie calls one of her "coupon ladies", came in to find out how Atticus had been doing since coming home. She brought Valerie a literal trunk full of groceries for us! Not only did she have food, but 2 whole bags of various non-grocery items like tissues, toilet paper, ziploc bags, etc that I had needed as well! I have never met this lady, and she had no way of knowing that I needed these things. But God bless her! It's just awesome how God works in our daily lives!
Thanks for everyone's continued prayers! We still have a long road ahead. I'll try to remember to update a little more regularly! As always, keep on prayin'!
Sunday, May 16, 2010
Quick update
Well, just a quick update for today. Atticus has offically been home for 2 months as of today. It seems so hard to believe. It seems like the days in the PCICU were so very long ago. Each day with Atticus is a little miracle. It seems that no matter what he goes through; he remains this little positive, happy guy. He can have a coughing fit, which causes him to throw up, and he's smiling and laughing again within moments of when he's finished. He is really a lesson to the rest of us.
I also wanted to update everyone on Atticus' hearing. We finally had a hearing test done, and we've discovered that Atticus does have moderate hearing loss in both ears. His right ear is slightly worse than his left ear, which really isn't surprising since most of the damage from the Cath procedure happened on his right side. The good news is that it's only moderate (vs severe or total), so it's completely manageable. We'll be following up with Dr Little (his audiologist) to see what exactly she wants to do about it. I know that whatever she decides to do; she had already said that she wants it done by the time Atticus reaches 9 months old to be able to give him the best shot at verbal/language skills. As always, keep on prayin'!
P.S. I'm going to upload some new pictures we had made of him this past Thursday! He is getting so big! And yes, he's still on oxygen, we just snuck off the air tube for the pictures!
I also wanted to update everyone on Atticus' hearing. We finally had a hearing test done, and we've discovered that Atticus does have moderate hearing loss in both ears. His right ear is slightly worse than his left ear, which really isn't surprising since most of the damage from the Cath procedure happened on his right side. The good news is that it's only moderate (vs severe or total), so it's completely manageable. We'll be following up with Dr Little (his audiologist) to see what exactly she wants to do about it. I know that whatever she decides to do; she had already said that she wants it done by the time Atticus reaches 9 months old to be able to give him the best shot at verbal/language skills. As always, keep on prayin'!
P.S. I'm going to upload some new pictures we had made of him this past Thursday! He is getting so big! And yes, he's still on oxygen, we just snuck off the air tube for the pictures!
Friday, May 7, 2010
Long overdue update
Ok. Sorry it's been so long since my last update. We've had a flurry of doctor's visits, and home visits to set up all the various therapies, etc. I'll try to make sure I cover everything!
Atticusis doing great since coming home. He's about 26.5 inches long and a touch over 16 lbs. We've seen his cardiologist, Dr Williams, and he's very happy with the way Atticus' heart looks & is performing. He hasn't made any changes to any of his medicines.
We also finally got a chance to see the pulmonologist, Dr Brown, and he's pretty happy with the way his lungs/pulmonary system look. Atticus does have pulmonary hypertension as a result of being on the ventilator for so lung, but Dr Brown think his lungs sound good considering all Atticus has been through. He didn't think it sounded like he had any fluid on his lungs, but he did think that they sounded a little wet. So he increased Atticus' QVAR (the steriod inhaler) up from 40mcg to 80mcg. Other than that, he didn't make any other changes to the Viagra. (Yes, it's ok to giggle at the fact Atticusis on Viagra. It's actually for his pulmonary system--the original use for it. It's really fun trying to explain to the insurance company why you need approval for a 7 month old to be on Viagra though!!) :)
We also met with the audiologist, Dr Little, about Atticus' hearing. She wants to see us again this upcoming Tuesday before she makes a final determination about his hearing. She said that he's not totally deaf, but she does believe there is some hearing loss. He would respond to her voice, but not to noises played at the same pitch. She also said that depending on the severity; she'll want to have him a hearing aid of some sort by 9 months old to give him the best opportunity for language & verbal skill development.
Then we also followed up with the neurologist, Dr Kinsman, back down at MUSC. He had another EEG performed. Thankfully, he said that there weren't any more seizures (visible or clinical), but that the blood flow to the frontal lobes was still slow, so he wasn't going to make any changes to Atticus' Keppra (the anti-seizure med). We had been hoping that we could start weaning down that one, but I guess it'll just have to wait.
Hmmmmm....what else? Oh yes. We've also visited withhis regular pediatrician, Dr Goldberg, several times now, and she couldn't be happier with him. She thinks he's been making excellent progress both in height and weight, and in physical development. He's now able to put his toes in his mouth, hold his head up on his own, reach for objects, grasp objects in 1 or 2 hands, and can almost completely turn himself over from his back to his stomach on both sides. He's just a miracle.
We've also had several in-home visits to determine his eligibility/evaluate him for physical therapy (PT), occupational therapy (OT), and speech therapy. We've been set up with BabyNetthrough the SC School for the Deaf and Blind, since they believe there's a problem with his hearing. We should hopefully get the services going in the next week or so.
We'll also be coming back to Charleston next week (May 14th for all my nurse friends that want to see him! wink, wink) to meet with the ENT (ears, nose, throat) folks at MUSC. I can tell that Atticus' vocal chords are beginning to slowly heal. He usually growls at different pitches to let you know his mood. (It's pretty cute--I call him my little Mogwhy (sp?)...you know...the little cute thing that turns into the Gremlins in the movies.) But lately he's started making the occasional squeak or coo that almost sounds like a normal voice! It just makes my heart soar to begin to be able to finally hear his voice!
I am humbled and amazed at all the wonderful people that have been praying for us and keeping us in their thoughts. I'd just like to say, "Thank You" again. God has granted us such a miracle in Atticus. He's has consistently beaten the odds when the doctor's didn't think he was going to make it. He continues to prove the healing power of God in his amazing rate of development and playing "catch-up" in what he should be able to do at his age. None of the doctors can believe he's so alert, interactive, and happy with all that he's been through. God is so awesome in so many ways. I can't help but be humbled everytime I wake up and look in Atticus' crib and see him sleeping peacefully there. It's still surreal, and it's been almost 2 months. Please continue to pray for Atticus. He still has a lot of recovering to do, and at least 1 more surgery on down the line. Please pray that he continues to grow stronger everyday, and that he continues to be a living testament of God's healing and mercy. Please also continue to pray for the rest of our family. Pray that we continue to have the strength, energy, and patience that is need. We'll be going back to church for the 1st time with Atticus this Sunday, for Mother's day (Lord willing). I know everyone there is just dying to meet this little boy that they've been praying for so hard! So pray that everyone stays healthy so that we can make it there!! I'll try to update more soon. As always....keep on prayin'!
Atticusis doing great since coming home. He's about 26.5 inches long and a touch over 16 lbs. We've seen his cardiologist, Dr Williams, and he's very happy with the way Atticus' heart looks & is performing. He hasn't made any changes to any of his medicines.
We also finally got a chance to see the pulmonologist, Dr Brown, and he's pretty happy with the way his lungs/pulmonary system look. Atticus does have pulmonary hypertension as a result of being on the ventilator for so lung, but Dr Brown think his lungs sound good considering all Atticus has been through. He didn't think it sounded like he had any fluid on his lungs, but he did think that they sounded a little wet. So he increased Atticus' QVAR (the steriod inhaler) up from 40mcg to 80mcg. Other than that, he didn't make any other changes to the Viagra. (Yes, it's ok to giggle at the fact Atticusis on Viagra. It's actually for his pulmonary system--the original use for it. It's really fun trying to explain to the insurance company why you need approval for a 7 month old to be on Viagra though!!) :)
We also met with the audiologist, Dr Little, about Atticus' hearing. She wants to see us again this upcoming Tuesday before she makes a final determination about his hearing. She said that he's not totally deaf, but she does believe there is some hearing loss. He would respond to her voice, but not to noises played at the same pitch. She also said that depending on the severity; she'll want to have him a hearing aid of some sort by 9 months old to give him the best opportunity for language & verbal skill development.
Then we also followed up with the neurologist, Dr Kinsman, back down at MUSC. He had another EEG performed. Thankfully, he said that there weren't any more seizures (visible or clinical), but that the blood flow to the frontal lobes was still slow, so he wasn't going to make any changes to Atticus' Keppra (the anti-seizure med). We had been hoping that we could start weaning down that one, but I guess it'll just have to wait.
Hmmmmm....what else? Oh yes. We've also visited withhis regular pediatrician, Dr Goldberg, several times now, and she couldn't be happier with him. She thinks he's been making excellent progress both in height and weight, and in physical development. He's now able to put his toes in his mouth, hold his head up on his own, reach for objects, grasp objects in 1 or 2 hands, and can almost completely turn himself over from his back to his stomach on both sides. He's just a miracle.
We've also had several in-home visits to determine his eligibility/evaluate him for physical therapy (PT), occupational therapy (OT), and speech therapy. We've been set up with BabyNetthrough the SC School for the Deaf and Blind, since they believe there's a problem with his hearing. We should hopefully get the services going in the next week or so.
We'll also be coming back to Charleston next week (May 14th for all my nurse friends that want to see him! wink, wink) to meet with the ENT (ears, nose, throat) folks at MUSC. I can tell that Atticus' vocal chords are beginning to slowly heal. He usually growls at different pitches to let you know his mood. (It's pretty cute--I call him my little Mogwhy (sp?)...you know...the little cute thing that turns into the Gremlins in the movies.) But lately he's started making the occasional squeak or coo that almost sounds like a normal voice! It just makes my heart soar to begin to be able to finally hear his voice!
I am humbled and amazed at all the wonderful people that have been praying for us and keeping us in their thoughts. I'd just like to say, "Thank You" again. God has granted us such a miracle in Atticus. He's has consistently beaten the odds when the doctor's didn't think he was going to make it. He continues to prove the healing power of God in his amazing rate of development and playing "catch-up" in what he should be able to do at his age. None of the doctors can believe he's so alert, interactive, and happy with all that he's been through. God is so awesome in so many ways. I can't help but be humbled everytime I wake up and look in Atticus' crib and see him sleeping peacefully there. It's still surreal, and it's been almost 2 months. Please continue to pray for Atticus. He still has a lot of recovering to do, and at least 1 more surgery on down the line. Please pray that he continues to grow stronger everyday, and that he continues to be a living testament of God's healing and mercy. Please also continue to pray for the rest of our family. Pray that we continue to have the strength, energy, and patience that is need. We'll be going back to church for the 1st time with Atticus this Sunday, for Mother's day (Lord willing). I know everyone there is just dying to meet this little boy that they've been praying for so hard! So pray that everyone stays healthy so that we can make it there!! I'll try to update more soon. As always....keep on prayin'!
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