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!
Sunday, May 16, 2010
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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