Friday, November 11, 2011
First Steps Meeting
The visit from Missouri First Steps coordinators this morning went well. Based on my main concerned for Lincoln, self-calming and eating, his main therapist will be occupational. He will also receive support from physical therapy and a nutritionist. His first appointments are not set up yet, but we are going to start with OT twice per month and PT and Nutrition once per month. Lincoln will be re-evaluated every six months until age three, when he graduated from the program. Of course, I can change anything from frequency of visits to removing Linc from the program at any time if I feel the need. So far I am very happy with the people and services of MO First Steps and hopefully they will be helpful to Lincoln's development.
Second Report Card
Yesterday I took Lincoln to SLCH for his clinic appointments for Newborn Medicine and Pediatric Surgery, and Lincoln got his second good "report card!" Lincoln also did excellent in the car! He barely cried at all and seemed to enjoy himself at times. He likes to look in the mirror and just give him a blanket to feel and chew and he is alright!
Newborn Medicine was our first appointment and Lincoln was very fussy by that point. (It was time for his morning nap). After he was weighed and measured (12 lbs 11oz, 24.5 inches long) I was able to calm him and he slept for about 15 minutes while I talked to the doc. Lincoln was refreshed enough for a quick exam after that and a breathing treatment of Albuterol to help with his on-going wheezing and coughing. He hates the treatments, but they help him a lot. His wheezing was completely gone after the treatment. I am to continue nebulizer treatments of Albuterol at home ever 6 hours throughout the weekend and then switch for twice per day to help Linc get over his wheeze, hopefully stopping all treatments within about 10 days. The doc said it is very common for kids that were on the vent for a long time to wheeze, especially the first winter. She does not expect Lincoln to be "asthmatic" or to need treatment long-term.
Otherwise, no changes for Linc. His doc was pleased with his weight gain (approx. 20 grams gained per day since our last visit - perfect!) and happy with Lincoln's tone and physical development. He will remain on the concentrated formula to help him catch up. Even though his average weight gain was good, he is still well below the average weight for his age group. Linc will remain on 0.8LPM of oxygen, probably throughout the winter. His doctor doesn't want to push him too hard when he may be catching colds. I am still really hoping Lincoln is free of lines by the time he crawls! That would just be a nightmare!
Linc also had an echocardiogram and chest x-ray in between the two visits. Lincoln did great for both. There was a TV in the room for the echo so Lincoln pretty much watched cartoons the whole time. The last echo Linc had was back in June right after his repair surgery. At that time he was still on the ventilator and Nitric Oxide so the two echos are really not exactly comparable but it was all the doctor had to go on. Although Linc's echo yesterday did show improvement and good function overall for someone who is oxygen dependent, there are still signs of some hypertension. Therefore, Lincoln's surgeon, neonatologist, and cardiologist all agree that he should stay on his small dose of sildenafil. The hypertension does not appear to be severe enough to justify increasing Lincoln's dose, but since he still has some hypertension present, so discontinuing the med is not wanted either. The doctor said that she would like to see another echo in about to months.
Lincoln was not too happy to get his chest x-ray, but it was over quickly. They were able to get good pictures the first time. His x-ray looks good, with no signs of reherniation or pneumonia. After the x-ray we headed up to see Linc's surgeon. She was also happy with Lincoln's growth and health.
Lincoln has had a suspected inguinal hernia since birth that has not caused any issues until recently. (Yes. That makes three birth defects in all.) I actually brought Linc to the ER Monday night after a short episode where he seemed to be in pain, but everything turned out to be OK. His surgeon was notified of our visit and she suggested setting a surgery date to repair the hernia. I was hoping to have Lincoln's inguinal hernia repaired at the same time as his hypospadias but the urologist wants to wait until Lincoln is closer to 1 year for that and the inguinal hernia is more urgent. I scheduled Lincoln's surgery to repair the inguinal hernia for December 9th. It is expected to be an easy, outpatient surgery and Linc can go home that evening. It will be nice to have another thing fixed and off of the "watch list."
Lincoln was exhausted by the time our five hour trip was finished and he fell asleep fast in the car on the way home. Overall, it was a really good trip with lots of good things to report on Lincoln. His doctors and I are just pleased as punch. Lincoln's next clinic will be next month, just before his surgery.
Newborn Medicine was our first appointment and Lincoln was very fussy by that point. (It was time for his morning nap). After he was weighed and measured (12 lbs 11oz, 24.5 inches long) I was able to calm him and he slept for about 15 minutes while I talked to the doc. Lincoln was refreshed enough for a quick exam after that and a breathing treatment of Albuterol to help with his on-going wheezing and coughing. He hates the treatments, but they help him a lot. His wheezing was completely gone after the treatment. I am to continue nebulizer treatments of Albuterol at home ever 6 hours throughout the weekend and then switch for twice per day to help Linc get over his wheeze, hopefully stopping all treatments within about 10 days. The doc said it is very common for kids that were on the vent for a long time to wheeze, especially the first winter. She does not expect Lincoln to be "asthmatic" or to need treatment long-term.
Otherwise, no changes for Linc. His doc was pleased with his weight gain (approx. 20 grams gained per day since our last visit - perfect!) and happy with Lincoln's tone and physical development. He will remain on the concentrated formula to help him catch up. Even though his average weight gain was good, he is still well below the average weight for his age group. Linc will remain on 0.8LPM of oxygen, probably throughout the winter. His doctor doesn't want to push him too hard when he may be catching colds. I am still really hoping Lincoln is free of lines by the time he crawls! That would just be a nightmare!
Linc also had an echocardiogram and chest x-ray in between the two visits. Lincoln did great for both. There was a TV in the room for the echo so Lincoln pretty much watched cartoons the whole time. The last echo Linc had was back in June right after his repair surgery. At that time he was still on the ventilator and Nitric Oxide so the two echos are really not exactly comparable but it was all the doctor had to go on. Although Linc's echo yesterday did show improvement and good function overall for someone who is oxygen dependent, there are still signs of some hypertension. Therefore, Lincoln's surgeon, neonatologist, and cardiologist all agree that he should stay on his small dose of sildenafil. The hypertension does not appear to be severe enough to justify increasing Lincoln's dose, but since he still has some hypertension present, so discontinuing the med is not wanted either. The doctor said that she would like to see another echo in about to months.
Lincoln was not too happy to get his chest x-ray, but it was over quickly. They were able to get good pictures the first time. His x-ray looks good, with no signs of reherniation or pneumonia. After the x-ray we headed up to see Linc's surgeon. She was also happy with Lincoln's growth and health.
Lincoln has had a suspected inguinal hernia since birth that has not caused any issues until recently. (Yes. That makes three birth defects in all.) I actually brought Linc to the ER Monday night after a short episode where he seemed to be in pain, but everything turned out to be OK. His surgeon was notified of our visit and she suggested setting a surgery date to repair the hernia. I was hoping to have Lincoln's inguinal hernia repaired at the same time as his hypospadias but the urologist wants to wait until Lincoln is closer to 1 year for that and the inguinal hernia is more urgent. I scheduled Lincoln's surgery to repair the inguinal hernia for December 9th. It is expected to be an easy, outpatient surgery and Linc can go home that evening. It will be nice to have another thing fixed and off of the "watch list."
Lincoln was exhausted by the time our five hour trip was finished and he fell asleep fast in the car on the way home. Overall, it was a really good trip with lots of good things to report on Lincoln. His doctors and I are just pleased as punch. Lincoln's next clinic will be next month, just before his surgery.
Monday, November 7, 2011
Synagis Shot, and Side Notes
Linc had an appointment at the pediatrician this morning for his first Synagis shot (RSV antibodies). He did ok in the car on the way there. He likes it best when the car is moving, as most kids do. Lincoln was in a pretty good mood after being taken out of his car seat. We got his weight (12 lbs 5 oz = less than 1% for his age, but at least he's growing!) to verify the Synagis dose. No other measurements were taken though since his 6 month well visit isn't until next month.
Lincoln was smiling and talking to Dr. Fitz-James when she came in. She was very pleased with his progress, especially head control and awareness of his surroundings. She told me that Lincoln's cough and sneezing probably meant he had another cold. She said he most likely has had a string of different infections, rather than one cold lasting for the past 6 weeks since Lincoln has had some days when his symptoms are better. She said as long as his SO2 stays up that his wheezing and coughing are nothing to be too concerned about. His airways are not completely healthy yet and some respiratory "stress" is to be expected. If his mild upper respiratory symptoms turn into lower respiratory symptoms, that is when we get worried. She did find a mild ear infection in Lincoln's right ear, probably due to him having nasal drainage for so many weeks. Lincoln has been more irritable the past 4 days or so, but he never ran a fever or pulled at his ears. She prescribed a round of antibiotics to make sure he gets over the infection.
The doc gave the go-ahead for Lincoln to start experimenting with solids in a few weeks since he is holding his head up in-line now when sitting. She also said that giving Linc some water and juice are ok too to make sure his bowels stay soft since he is on a concentrated formula, and may need some extra fluids. After the doctor was finished, the nurse gave Linc his Synagis shot, which was quite big, almost one ml. He also got a few of his 6 month vaccines so that he doesn't have so many shots at once next time we visit. He will get his flu shot next month too, as he will be 6 months the required minimum age! In all Lincoln got 3 shots in his thighs and one oral vaccine. He wasn't too happy after that (poor baby), but he soon fell asleep in the car and has been since. The doctor did say that Linc could run a fever from the shots and of course he may be irritable.
It was a good visit and nice to have a professional look Lincoln over, especially with his lingering cold symptoms. Needless to say, I worry about Lincoln constantly as a first time mom in addition to Linc's CDH. It's a little comforting to know he now has the RSV antibodies to help him out this season, and next month he will even have the flu vaccine to help more! Lincoln will go back to the pediatrician every 28 days through RSV season (Nov - March) to get a Synagis shot to help him fight any RSV he may come in contact with. Linc has two doctor appointments (Newborn Med and Surgery) and an echocardiogram scheduled for this Thursday at St. Louis Children's Hospital Clinics. Hopefully he will get two "good report cards" this week.
Side Note #1
Lincoln was accepted to the Missouri First Steps program for his home developmental therapies! He was accepted based on the DAYC evaluation that was taken a few weeks ago. He scored below his age group (5 months) in all five categories, but had to score at half of his age to qualify.
Cognition - 4 months
Communication - 3 months
Social/Emotional - 1 month
Physical Development - 3 months
Adaptive Behavior (self calming/dressing/bathing)- Birth
We have an appointment this Friday to discuss frequency of visits and what therapies Lincoln will benefit from. The Missouri program is more family based than the private agency we were using before, meaning the goal is to teach me, the parent, to help Lincoln, and not depend on only therapist working with Lincoln. He will have one main therapist, probably a PT, but she will have access to OT and Speech as consults if we run into a road block. I'll know more after our visit Friday. I'm so happy that Linc was accepted. This way I know I will get he help I need to help Lincoln catch up properly.
Side Note #2
Since I didn't post for Halloween, I thought I would sneak these pictures in of Lincoln's first Halloween. He didn't dress up, but still looked festive in a Jack-O-Lantern shirt and sleeper. We just stayed in and handed out candy to the many trick-or-treaters we get.
Lincoln was smiling and talking to Dr. Fitz-James when she came in. She was very pleased with his progress, especially head control and awareness of his surroundings. She told me that Lincoln's cough and sneezing probably meant he had another cold. She said he most likely has had a string of different infections, rather than one cold lasting for the past 6 weeks since Lincoln has had some days when his symptoms are better. She said as long as his SO2 stays up that his wheezing and coughing are nothing to be too concerned about. His airways are not completely healthy yet and some respiratory "stress" is to be expected. If his mild upper respiratory symptoms turn into lower respiratory symptoms, that is when we get worried. She did find a mild ear infection in Lincoln's right ear, probably due to him having nasal drainage for so many weeks. Lincoln has been more irritable the past 4 days or so, but he never ran a fever or pulled at his ears. She prescribed a round of antibiotics to make sure he gets over the infection.
The doc gave the go-ahead for Lincoln to start experimenting with solids in a few weeks since he is holding his head up in-line now when sitting. She also said that giving Linc some water and juice are ok too to make sure his bowels stay soft since he is on a concentrated formula, and may need some extra fluids. After the doctor was finished, the nurse gave Linc his Synagis shot, which was quite big, almost one ml. He also got a few of his 6 month vaccines so that he doesn't have so many shots at once next time we visit. He will get his flu shot next month too, as he will be 6 months the required minimum age! In all Lincoln got 3 shots in his thighs and one oral vaccine. He wasn't too happy after that (poor baby), but he soon fell asleep in the car and has been since. The doctor did say that Linc could run a fever from the shots and of course he may be irritable.
It was a good visit and nice to have a professional look Lincoln over, especially with his lingering cold symptoms. Needless to say, I worry about Lincoln constantly as a first time mom in addition to Linc's CDH. It's a little comforting to know he now has the RSV antibodies to help him out this season, and next month he will even have the flu vaccine to help more! Lincoln will go back to the pediatrician every 28 days through RSV season (Nov - March) to get a Synagis shot to help him fight any RSV he may come in contact with. Linc has two doctor appointments (Newborn Med and Surgery) and an echocardiogram scheduled for this Thursday at St. Louis Children's Hospital Clinics. Hopefully he will get two "good report cards" this week.
Side Note #1
Lincoln was accepted to the Missouri First Steps program for his home developmental therapies! He was accepted based on the DAYC evaluation that was taken a few weeks ago. He scored below his age group (5 months) in all five categories, but had to score at half of his age to qualify.
Cognition - 4 months
Communication - 3 months
Social/Emotional - 1 month
Physical Development - 3 months
Adaptive Behavior (self calming/dressing/bathing)- Birth
We have an appointment this Friday to discuss frequency of visits and what therapies Lincoln will benefit from. The Missouri program is more family based than the private agency we were using before, meaning the goal is to teach me, the parent, to help Lincoln, and not depend on only therapist working with Lincoln. He will have one main therapist, probably a PT, but she will have access to OT and Speech as consults if we run into a road block. I'll know more after our visit Friday. I'm so happy that Linc was accepted. This way I know I will get he help I need to help Lincoln catch up properly.
Side Note #2
Since I didn't post for Halloween, I thought I would sneak these pictures in of Lincoln's first Halloween. He didn't dress up, but still looked festive in a Jack-O-Lantern shirt and sleeper. We just stayed in and handed out candy to the many trick-or-treaters we get.
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| I LOVE this picture! |
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| Mommy and Linc. (My first attempt at using the timer on our camera.) |
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| My bright eyed boy. |
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| It was a long night. Those Trick-or-Treaters kept comin! |
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