I got a call from Ronan's sleep doctor today informing me that she and two of his other doctors had been having a conference about Ronan. They decided that he needs to see a cardiologist again. He had a cardiologist following him when he was first born because he had a delayed PDA closure (it's a sort of valve that all newborns have open but it closes on it's own usually). His stayed opened quite awhile after it should have closed and the day before they were surgically going to close it it suddenly closed. Also he was born with a VSD or ventricular septal defect which is a type of hole in the heart.
Shortly after Ronan came home from the NICU he was sent back into the hospital for back to back apnea spells. The cardiologist looked at his heart again and was amazed to see it was starting to form healing tissue. The cardiologist told me then that Ronan had been a patient he'd been very concerned about and he had been sure Ronan would need surgical repair but his heart was repairing itself now. By the time Ronan was six months old the hole in his heart had completely closed on its own.
Now the doctors are concerned his heart is causing trouble again. When he was born he had extremely high heart pressure. They are concerned that something might be occurring again in that area and causing his apnea. There second concern is that if the heart isn't contributing to the apnea that the apnea is damaging his heart. For this reason they want him to have another cardiology work-up. He's also having trouble with his heart rate going extremely low when he sleeps and way too high when he eats or is just slightly upset. This gives them another reason to be concerned about heart involvement.
The soonest available appointment for the cardiologist was April 12th. His doctors are sending his cardiologist a letter with their concerns and asking him to fill them in with what's going on. After the heart work-up they are going to have another conference with all of his doctors and see what they want to do about his apnea. There have been some extreme measures mentioned and Isaac and I have been talking about what lengths we want to go. Right now we are unwilling to go to the extreme some have suggested. But we are praying for wisdom. If his heart is having trouble that will of course change things.
As for the rest of the day Ronan got fitted for his second set of foot braces. He out grew the old ones. His old ones were dinosaurs this time Isaac picked out a jungle pattern. We also ordered him the wider shoes to fit over the braces. The braces have to be worn with shoes. He should have them in two weeks. Inara said "Ball" today. Ronan was having therapy and as usual he was trying to make things as hard as possible on his therapist. He always feels the need to show them he's still the one in charge of the therapy session. He can be too smart for his own good sometimes and devises multiple ways of escaping therapy.
But Inara was happy to oblige the therapist even though she herself doesn't receive therapy. We were rolling a ball back and forth I had Inara sitting in front of me and the therapist had Ronan and we would pass the ball back and forth using the babies' hands. We told them to roll the ball. All of a sudden Inara reached her hand out onto the ball and as plain as could be said "Ball". The therapist looked at me and said "She just said ball". Neither of us could believe it. This brings her total to four words at nine months.
I got a call from Ronan's sleep doctor today informing me that she and two of his other doctors had been having a conference about Ronan. They decided that he needs to see a cardiologist again. He had a cardiologist following him when he was first born because he had a delayed PDA closure (it's a sort of valve that all newborns have open but it closes on it's own usually). His stayed opened quite awhile after it should have closed and the day before they were surgically going to close it it suddenly closed. Also he was born with a VSD or ventricular septal defect which is a type of hole in the heart.
Shortly after Ronan came home from the NICU he was sent back into the hospital for back to back apnea spells. The cardiologist looked at his heart again and was amazed to see it was starting to form healing tissue. The cardiologist told me then that Ronan had been a patient he'd been very concerned about and he had been sure Ronan would need surgical repair but his heart was repairing itself now. By the time Ronan was six months old the hole in his heart had completely closed on its own.
Now the doctors are concerned his heart is causing trouble again. When he was born he had extremely high heart pressure. They are concerned that something might be occurring again in that area and causing his apnea. There second concern is that if the heart isn't contributing to the apnea that the apnea is damaging his heart. For this reason they want him to have another cardiology work-up. He's also having trouble with his heart rate going extremely low when he sleeps and way too high when he eats or is just slightly upset. This gives them another reason to be concerned about heart involvement.
The soonest available appointment for the cardiologist was April 12th. His doctors are sending his cardiologist a letter with their concerns and asking him to fill them in with what's going on. After the heart work-up they are going to have another conference with all of his doctors and see what they want to do about his apnea. There have been some extreme measures mentioned and Isaac and I have been talking about what lengths we want to go. Right now we are unwilling to go to the extreme some have suggested. But we are praying for wisdom. If his heart is having trouble that will of course change things.
As for the rest of the day Ronan got fitted for his second set of foot braces. He out grew the old ones. His old ones were dinosaurs this time Isaac picked out a jungle pattern. We also ordered him the wider shoes to fit over the braces. The braces have to be worn with shoes. He should have them in two weeks. Inara said "Ball" today. Ronan was having therapy and as usual he was trying to make things as hard as possible on his therapist. He always feels the need to show them he's still the one in charge of the therapy session. He can be too smart for his own good sometimes and devises multiple ways of escaping therapy.
But Inara was happy to oblige the therapist even though she herself doesn't receive therapy. We were rolling a ball back and forth I had Inara sitting in front of me and the therapist had Ronan and we would pass the ball back and forth using the babies' hands. We told them to roll the ball. All of a sudden Inara reached her hand out onto the ball and as plain as could be said "Ball". The therapist looked at me and said "She just said ball". Neither of us could believe it. This brings her total to four words at nine months.
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