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'!
Monday, June 7, 2010
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'!
Monday, March 29, 2010
An update from home!
Sorry it's been a little while since my last update, but it's been hectic trying to take over as not only a 24/7 nurse, but also stepping back into the role as a full-time mother to the other two children, wife, cook, housekeeper, etc. Not to mention we've had a million doctor's visits, home visits, appts for Home Care products such as oxygen tanks, feeding pumps, etc. Not that I'm complaining about any of it! I'm so happy to be home again. It seems almost surreal.
Thankfully, Atticus is adjusting fine to home life. His feeds are going better (he had a problem with throwing up after each feed when we first got started with his G-tube), and he's finally starting to slowly gain some weight. We've also been working on holding up his head on his own, turning over, and some tummy time. Sandy and Gideon are so happy to have us home. Sandy just wants to spend every moment with Atticus or myself. She wants to help do everything. She wants to help bathe him, put lotion on him, change diapers, start his feeding pump, give his meds, etc. She's so eager to help, she even started his feeding pump this morning before I even had it attached to him! LOL She's so sweet. Gideon is also warming up to Atticus and having him home. He's even helped throw away a few diapers, hold a bottle, and even gave him a kiss today.
I just wanted to also take this time to say "Thank You" to all those who've been praying for so long with us for this time. I am humbled by all the prayers, phone calls, cards, emails, donations, etc to help us through this time. So many of you are praying for us, and I've never even met you! It is just amazing to know that Atticus has this army of folks pulling for him all around the world. Please take the time to sign the Guestbook, if you've never done it. I'd love to see who is checking up on our little man, and let him know who his fans are around the world.
God has blessed us greatly, even with all we've been through. It's drawing close to Easter time, and I am humbled once again. With all that Atticus has suffered; God let His ONLY Son, Jesus, suffer even more than that. He has spared the life of my son, where He did not even spare the life of His own. He has given me the desires of my heart...to have all my children home under one roof. Well, it's almost time to give Atticus his last med for the night, then off to bed for me. Thank you all for your prayers. Please continue to pray for Atticus and our family. He still has a long road ahead of him; though we celebrate the victories of today! As always, keep on prayin'!
Thankfully, Atticus is adjusting fine to home life. His feeds are going better (he had a problem with throwing up after each feed when we first got started with his G-tube), and he's finally starting to slowly gain some weight. We've also been working on holding up his head on his own, turning over, and some tummy time. Sandy and Gideon are so happy to have us home. Sandy just wants to spend every moment with Atticus or myself. She wants to help do everything. She wants to help bathe him, put lotion on him, change diapers, start his feeding pump, give his meds, etc. She's so eager to help, she even started his feeding pump this morning before I even had it attached to him! LOL She's so sweet. Gideon is also warming up to Atticus and having him home. He's even helped throw away a few diapers, hold a bottle, and even gave him a kiss today.
I just wanted to also take this time to say "Thank You" to all those who've been praying for so long with us for this time. I am humbled by all the prayers, phone calls, cards, emails, donations, etc to help us through this time. So many of you are praying for us, and I've never even met you! It is just amazing to know that Atticus has this army of folks pulling for him all around the world. Please take the time to sign the Guestbook, if you've never done it. I'd love to see who is checking up on our little man, and let him know who his fans are around the world.
God has blessed us greatly, even with all we've been through. It's drawing close to Easter time, and I am humbled once again. With all that Atticus has suffered; God let His ONLY Son, Jesus, suffer even more than that. He has spared the life of my son, where He did not even spare the life of His own. He has given me the desires of my heart...to have all my children home under one roof. Well, it's almost time to give Atticus his last med for the night, then off to bed for me. Thank you all for your prayers. Please continue to pray for Atticus and our family. He still has a long road ahead of him; though we celebrate the victories of today! As always, keep on prayin'!
Monday, March 15, 2010
I can't sleep
I can't sleep right now. Sandy and Gideon are off to spend the next two nights with Grandma Hemrick & Aunt Isabelle. Robbie and I are off to Charleston tomorrow to bring Atticus home for the first time ever! One night at my Dad's in Mt P (so we can be close to the hospital for the 1st night, and so that they can have a night to love on Atticus after housing me and taking care of me for the last 5 months), then home to Aiken! Thanks to Uncle Sam who will let Robbie take three days off so that we can have a few days together with all the kids for the first time (hope we have enough to make a down payment on a new house, though! lol).
But Thanks most of all to such an awesome God that has made this situation what it has been. I have certainly found myself drawn closer to the Lord than I ever thought possible. Thank you all for your many prayers. Atticus has been through so much in the last 5 months that it seems almost surreal that he is finally coming home for the first time. I feel humbled to know that so many people are pulling for my little man, and that you have shared his story with other people who are pulling for him that we've never even met. I'm trying to get to sleep, but I'm just too full of anticipation, joy, and overwhelming gratefulness....I really think I'm going to burst. The hospital gave Atticus a little heart pillow that people can write messages on, after his first heart surgery. I left it down in the PCICU for all the doctors and nurses to sign. Various family members had already signed it, but now, I don't think you could possibly fit another signature on it. Some messages are short, others take up enitre sections of the pillow, but they all show the depth to which this little man's story has reached out to so many people already in such a realtively short time. As I often repeat, Atticus' story is one of God's amazing healing power, the power of prayer, and God's awesome grace. He blessed us in all aspects of this leg of our journey. from not having to worry about a place to stay (Thanks Dad and Crissie) to not having to worry about my other children's care (Thanks my wonderful Hubbie, Mom, Sister, Mother-in-law, and Sister-in-law), to having a wonderful husband to stand by my side through many "for better or for worse" moments, to a supporting church family and friends that helped us through so many means (prayers, money, cards, calls, food, baby sitting, advice, and on and on and on....),to the wonderful doctors, nurses, surgeons, respiratory techs, and staff that care so deeply in seeing Atticus get better and that have invested so much of themselves in him, to those who kept me sane through the diffcult times you all know who you are ;).
I am simply overwhelmed. There is still a long road ahead. But I am stopping to celebrate today. This is a major answer to my prayers. I look at the crib in our room and realize that it won't be long until it's no longer empty. That soon I won't be driving back and forth, leaving part of my family no matter which way I was traveling. All 3 children will be home under my roof. I will be home with my husband. We have so much to be grateful for, that I don't think all of cyberspace could contain it. I think I've finally managed to stay up long enough to make myself tired. Gotta try to get some sleep before we have to get on the road! Good nite to all! And as always...Keep on prayin'!! :)
But Thanks most of all to such an awesome God that has made this situation what it has been. I have certainly found myself drawn closer to the Lord than I ever thought possible. Thank you all for your many prayers. Atticus has been through so much in the last 5 months that it seems almost surreal that he is finally coming home for the first time. I feel humbled to know that so many people are pulling for my little man, and that you have shared his story with other people who are pulling for him that we've never even met. I'm trying to get to sleep, but I'm just too full of anticipation, joy, and overwhelming gratefulness....I really think I'm going to burst. The hospital gave Atticus a little heart pillow that people can write messages on, after his first heart surgery. I left it down in the PCICU for all the doctors and nurses to sign. Various family members had already signed it, but now, I don't think you could possibly fit another signature on it. Some messages are short, others take up enitre sections of the pillow, but they all show the depth to which this little man's story has reached out to so many people already in such a realtively short time. As I often repeat, Atticus' story is one of God's amazing healing power, the power of prayer, and God's awesome grace. He blessed us in all aspects of this leg of our journey. from not having to worry about a place to stay (Thanks Dad and Crissie) to not having to worry about my other children's care (Thanks my wonderful Hubbie, Mom, Sister, Mother-in-law, and Sister-in-law), to having a wonderful husband to stand by my side through many "for better or for worse" moments, to a supporting church family and friends that helped us through so many means (prayers, money, cards, calls, food, baby sitting, advice, and on and on and on....),to the wonderful doctors, nurses, surgeons, respiratory techs, and staff that care so deeply in seeing Atticus get better and that have invested so much of themselves in him, to those who kept me sane through the diffcult times you all know who you are ;).
I am simply overwhelmed. There is still a long road ahead. But I am stopping to celebrate today. This is a major answer to my prayers. I look at the crib in our room and realize that it won't be long until it's no longer empty. That soon I won't be driving back and forth, leaving part of my family no matter which way I was traveling. All 3 children will be home under my roof. I will be home with my husband. We have so much to be grateful for, that I don't think all of cyberspace could contain it. I think I've finally managed to stay up long enough to make myself tired. Gotta try to get some sleep before we have to get on the road! Good nite to all! And as always...Keep on prayin'!! :)
Thursday, March 11, 2010
Our first trip outside!
Hello everyone!
I meant to post this yesterday, but Atticus just did not want to got to sleep last night! :) He was too busy playing and laughing. But he had had a rather exciting day yesterday. First, we got to go to the Children's Atrium and meet THE CAT IN THE HAT!! And yes it was THE cat. Apparently his "handler" is personal friends with Dr Seuss' second wife, who loans her the costume to go to various children hospitals and brighten the day of the patients. How cool!
Then, we got to take our very first trip outside!!!! This was very special to me because Atticus has never been out in the fresh air before. It also shows how well he is doing! They were willing to let him go outside with only an air tank...and no monitors!!! :) Atticus was asleep on the trip down the elevator, but when we went outside and the strong warm breeze hit his face, his little eyes just popped open! He started looking around like, "What is THAT??!" He dozed some more as we strolled around the circle in front of the hospital, and we eventually came upstairs.
Later the ladies from OT (Occupational Therapy) and PT (Physical Therapy) dropped by to work with him and give him some exercise and practice on holding his head up, rotating his joints, putting some weight on his feet, etc. You would think that all that excitement would just wear him out, but not my little man! He decided that there was too much that he might miss out on and didn't go to sleep until almost 1AM!!
The doctors also gave us some good news, and some not so great news yesterday. The good news is that it looks like Monday will be the big day!!! :) He won't make it home for Gideon's birthday, but the more I got to thinking about it; that may be a good thing too. That way Gideon can have all my attention on his birthday, which he has largely been without for the last 5 months. Again, God's timing is perfect in all things. (It also gives me the opportunity to take a lot of my & his things home and put them away before we come home with medical equipment, etc) The not so great news I already posted a little while ago. Atticus has not passed his last two hearing screens. They don't know yet how severe this means his hearing loss is. He'll have a follow up visit sometime in the near future with an Audiologist, to determine exactly that. A little silver lining though; the doctors did say that it would be very unusual for complete hearing loss...especially since he's given signs through out his time at MUSC that he could hear people's voices, and would react to loud noises. There's just no way to tell until he has his follow up visit. Please keep praying for Atticus, and for me. Pray that his hearing loss is not severe, and if it is, that I can learn sign language fairly easily!! :)
I meant to post this yesterday, but Atticus just did not want to got to sleep last night! :) He was too busy playing and laughing. But he had had a rather exciting day yesterday. First, we got to go to the Children's Atrium and meet THE CAT IN THE HAT!! And yes it was THE cat. Apparently his "handler" is personal friends with Dr Seuss' second wife, who loans her the costume to go to various children hospitals and brighten the day of the patients. How cool!
Then, we got to take our very first trip outside!!!! This was very special to me because Atticus has never been out in the fresh air before. It also shows how well he is doing! They were willing to let him go outside with only an air tank...and no monitors!!! :) Atticus was asleep on the trip down the elevator, but when we went outside and the strong warm breeze hit his face, his little eyes just popped open! He started looking around like, "What is THAT??!" He dozed some more as we strolled around the circle in front of the hospital, and we eventually came upstairs.
Later the ladies from OT (Occupational Therapy) and PT (Physical Therapy) dropped by to work with him and give him some exercise and practice on holding his head up, rotating his joints, putting some weight on his feet, etc. You would think that all that excitement would just wear him out, but not my little man! He decided that there was too much that he might miss out on and didn't go to sleep until almost 1AM!!
The doctors also gave us some good news, and some not so great news yesterday. The good news is that it looks like Monday will be the big day!!! :) He won't make it home for Gideon's birthday, but the more I got to thinking about it; that may be a good thing too. That way Gideon can have all my attention on his birthday, which he has largely been without for the last 5 months. Again, God's timing is perfect in all things. (It also gives me the opportunity to take a lot of my & his things home and put them away before we come home with medical equipment, etc) The not so great news I already posted a little while ago. Atticus has not passed his last two hearing screens. They don't know yet how severe this means his hearing loss is. He'll have a follow up visit sometime in the near future with an Audiologist, to determine exactly that. A little silver lining though; the doctors did say that it would be very unusual for complete hearing loss...especially since he's given signs through out his time at MUSC that he could hear people's voices, and would react to loud noises. There's just no way to tell until he has his follow up visit. Please keep praying for Atticus, and for me. Pray that his hearing loss is not severe, and if it is, that I can learn sign language fairly easily!! :)
Tuesday, March 9, 2010
Only 1 step away.....
Hello everyone! Atticus certainly had a big day today. He started by having a swallow study done to see how well his vocal chords work, and of course, how well he can swallow. He got an 8 out of 10, which impressed the doctors because most babies that have been on a ventilator for so long generally don't manage to get anything down. He did really well with the thicker concentration (like a milkshake), and really bad with the thin concentration (like milk). All in all, it went well.
The other great news today is that we have offically gone to the step down unit, 7C!!!!!!! HOOOOOOORRRRRRAAAAAAAAAAYYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!! This is a huge step for Atticus! This means that we are only 1 step away from home. We have been waiting a loooong 5 months for this day. It still seems surreal that we've actually made it here to 7C. I'm still praying that Atticus can come home by the end of this week. It would be a huge blessing to have all 3 of my children home in time for Gideon's 3rd birthday on Sunday, March 14th. If not, we've waited this long, it won't kill us to wait a little longer. I'm just grateful that we've it out of the PCICU. I've started taking over giving Atticus his feeds and meds. Not as bad as I thought it would be. He also got "unplugged" from his IV today. It's so awesome to be able to just scoop him up whenever I want to. I also am bunking in room from here on out. They have a pull out couch, shower, etc in room, which is nice.
Thank you so much for the phone calls, emails, cards, visits, and the MANY prayers! God has truly worked many miracles for Atticus. Please continue to pray that Atticus can come home soon, and that he can stay home!!! (At least until his next surgery) I am so humbled to know that there are so many of you out there praying for our little guy. Even those that have never met us personally. Thank you all again for everything you've done, and as always....Keep on prayin'!
The other great news today is that we have offically gone to the step down unit, 7C!!!!!!! HOOOOOOORRRRRRAAAAAAAAAAYYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!! This is a huge step for Atticus! This means that we are only 1 step away from home. We have been waiting a loooong 5 months for this day. It still seems surreal that we've actually made it here to 7C. I'm still praying that Atticus can come home by the end of this week. It would be a huge blessing to have all 3 of my children home in time for Gideon's 3rd birthday on Sunday, March 14th. If not, we've waited this long, it won't kill us to wait a little longer. I'm just grateful that we've it out of the PCICU. I've started taking over giving Atticus his feeds and meds. Not as bad as I thought it would be. He also got "unplugged" from his IV today. It's so awesome to be able to just scoop him up whenever I want to. I also am bunking in room from here on out. They have a pull out couch, shower, etc in room, which is nice.
Thank you so much for the phone calls, emails, cards, visits, and the MANY prayers! God has truly worked many miracles for Atticus. Please continue to pray that Atticus can come home soon, and that he can stay home!!! (At least until his next surgery) I am so humbled to know that there are so many of you out there praying for our little guy. Even those that have never met us personally. Thank you all again for everything you've done, and as always....Keep on prayin'!
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