After the flurry of appointments a couple of weeks ago, things have settled down a little bit. We're really enjoying our time together this summer as a new family of five. We've spent a lot of time around water and have enjoyed a number of gatherings with family and friends. Brady has done remarkably well considering we haven't had a consistent schedule, and most of his naps have taken place in a car seat moving from one summer activity to the next.
About a week ago we received a message from our home care nurse telling us that Brady has reached the point where she no longer needs to visit. Ali is happy to have one less appointment to schedule. :)
We finally had our follow up appointment with the neurologist to go over the EEG results. She said there were no signs of seizures during the two hour test. In addition to seizures, they look for symmetry in brain waves, and there was some abnormal activity due to the injuries in his brain. The neurologist said she expected that to occur and she's not overly concerned by it.
The last time she saw Brady was about a month ago, and she was amazed at how much better he looked. She said he only had minor tone issues in his wrists and ankles, and she was impressed by how well he moved and interacted with her.
The neurologist said we can start weening Brady off Keppra (his anti-seizure medicine). We have moved from .5 ml twice a day to only once per day. We will eliminate it completely in three weeks.
We also started reducing Brady's overnight feeding assistance. Previously, Brady was connected to the feeding machine for 12 hours each night. We are reducing it by one hour every week.
We're hoping that reducing the nightly feeding amount will improve the amount he eats by bottle during the day. We've noticed that Brady isn't very hungry in the mornings. It makes sense that he wouldn't want to drink milk when he wakes up because he's being fed the entire time he's sleeping.
The biggest advantage to his overnight feeding is that Brady has slept through the night since he was in the hospital (sometimes we need to wake him up after 13 or 14 hours of sleep). Once again, this makes sense because he never wakes up hungry during the night.
We started feeding Brady rice cereal last week and will start introducing new foods every week from now on. Brady does a good job eating solid foods and is also doing much better with his bottle feeds. We've noticed that he's showing very few signs of reflux now. It's quite common for him to drink an entire 70ml (2.5 ounce) bottle in about five minutes without stopping (it previously took us about 30 minutes with several stops for reflux issues).
Brady is now 16 pounds, 8 ounces. He continues to be above the 75th percentile in height and weight.
Brady is seeing a physical therapist from Gillette every other week. She is working with him on rolling over, sitting up, balancing, and the first movements in crawling. She is also working on keeping his hands open. Brady still has a tendency to tuck his thumbs under his fingers in a fist at times. We are ordering new splints for him to wear at night to help with this.
The occupational therapist from the school district visits every week. She is also working with Brady on how to roll over, play with his toes, interact with toys, and maintain proper body position during tummy time. Since those sessions take place at our house, Ava is always excited to learn new activities to do with Brady.
Last Sunday was a very special day for our family because Brady was baptized. It was a great time for us to reflect on these past five months and be thankful for the countless miracles we've witnessed with our son.
We keep running into old friends and acquaintances who tell us that they're following Brady's story, have been touched by his journey, and are praying for him every night. We've also been told by several people that Brady's journal entries have helped them reflect on what's truly important in their lives.
I guess that's Brady's way of thanking you for all of your prayers, words of encouragement and support. Please keep them coming. :)
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, July 22, 2012
Tuesday, July 3, 2012
Happy 4th of July!
The past week has been a whirlwind of appointments for Brady. I've been working in the weight room every day until noon, and we've tried to schedule most of our appointments in the afternoon. Ali and I have talked often about how fortunate we are to have some flexibility with our schedules. We don't know how two parents working full time would be able to make it all happen.
Brady had an EEG test last Monday. The nurse placed 28 electrodes on his head about two inches apart. Each electrode was dipped in a conductive jelly. She then placed some cotton around each probe to act as hair and then taped them in place. She then wrapped his head with a cloth bandage to hold everything together and connected him to a computer monitor and camera. This process took about 15 minutes.
She then recorded his brain activity for two hours. The nurse made notes any time he moved or talked. Brady fell asleep on my chest for around 30 minutes. The rest of the time he was laughing and cooing.
We were supposed to meet with the neurologist last Tuesday to go over the test results. She had a family emergency and needed to reschedule our appointment. However, she called us to let us know that his test came back perfect. This means we might be able to start weening Brady off his seizure medicine in the near future.
We met with a physical therapist from Gillette last Tuesday. She worked on Brady's arms and legs. She also worked on him rolling from front to back and back to front. She sat him up and tilted his body to the side to work on neck strength and reflexes. She was impressed with Brady's progress from the last time she saw him.
On Friday we went to Amplatz for Brady's four month checkup.
We first met with a physical therapist who evaluated Brady. She said Brady had some tone on the left side of his body, but it was minimal. She was very impressed with how much he was laughing and talking.
We then took Brady downstairs for a swallow study. They started by feeding him a liquid with the same consistency as our thickener at home. They used an x-ray machine to take quick pictures of him while he was eating. It was interesting to watch the sucking movement several times before he actually swallowed something. We could watch the fluid moving from the back of his mouth and down his esophagus. Everything looked great. They then moved to a liquid with no thickener. Brady also took that without any problems. They then fed him some rice cereal from a spoon and he did that perfectly as well.
They recommended that we could try feeding him milk without the thickener. We tried that on Saturday, but it seemed like Brady had more reflux issues (the doctors warned us about that). We went back to the thickener on Sunday and he seems to be eating better again.
After the swallow study, we met with two neonatologists who worked with Brady during his hospital stay. They gave us the most positive report we've received to date. They aren't at all concerned about the dark spot on the back of his head. They don't think he'll have any vision problems at all from that injury.
They explained that the brain in that location has a lot of plasticity and recovers from injuries very well. Brady did see an eye doctor two weeks ago and everything is perfect at this point. We will meet again with an eye doctor in 6 months just to be proactive with any possible vision concerns.
They are more concerned about the dark spot on the right side of his brain. The right side of the brain controls the left side of the body. In all of our other appointments, we've heard about increased tone in all four limbs. On Friday they said it was only on the left side and it was only a very slight difference. Ali and I have noticed that Brady's left eye also seems to be droopier at times (especially when he is tired). We don't know what this means for his long term development, but we'll continue to learn more through therapy and our observations.
Yesterday we met with Brady's pediatrician. Once again, he was very impressed with Brady's progress from his last appointment. He said cognitive development is most important at this point and Brady was showing off for him (talking, cooing, laughing, etc.). He also said Brady's tone was minimal on the left side.
We are going to start feeding Brady rice cereal this week. We are also going to reduce his overnight feedings by one hour each week. The goal is to eventually get him eating enough on his own to get rid of his feeding tube.
Today we met with the therapist from the school district. She also was impressed with how Brady is looking and acting. Brady is bringing both of his hands together, bringing his hands to his mouth, grabbing at toys, etc.
All in all, it was a busy week filled with lots of hope. We fully believe in the power of prayer and continue to be amazed at Brady's progress. We can't thank you enough for all of your love and support.
Have a fun and relaxing (and cool) 4th of July!
With love,
Tyler, Ali, Ava, Casey and Brady
Brady had an EEG test last Monday. The nurse placed 28 electrodes on his head about two inches apart. Each electrode was dipped in a conductive jelly. She then placed some cotton around each probe to act as hair and then taped them in place. She then wrapped his head with a cloth bandage to hold everything together and connected him to a computer monitor and camera. This process took about 15 minutes.
She then recorded his brain activity for two hours. The nurse made notes any time he moved or talked. Brady fell asleep on my chest for around 30 minutes. The rest of the time he was laughing and cooing.
We were supposed to meet with the neurologist last Tuesday to go over the test results. She had a family emergency and needed to reschedule our appointment. However, she called us to let us know that his test came back perfect. This means we might be able to start weening Brady off his seizure medicine in the near future.
We met with a physical therapist from Gillette last Tuesday. She worked on Brady's arms and legs. She also worked on him rolling from front to back and back to front. She sat him up and tilted his body to the side to work on neck strength and reflexes. She was impressed with Brady's progress from the last time she saw him.
On Friday we went to Amplatz for Brady's four month checkup.
We first met with a physical therapist who evaluated Brady. She said Brady had some tone on the left side of his body, but it was minimal. She was very impressed with how much he was laughing and talking.
We then took Brady downstairs for a swallow study. They started by feeding him a liquid with the same consistency as our thickener at home. They used an x-ray machine to take quick pictures of him while he was eating. It was interesting to watch the sucking movement several times before he actually swallowed something. We could watch the fluid moving from the back of his mouth and down his esophagus. Everything looked great. They then moved to a liquid with no thickener. Brady also took that without any problems. They then fed him some rice cereal from a spoon and he did that perfectly as well.
They recommended that we could try feeding him milk without the thickener. We tried that on Saturday, but it seemed like Brady had more reflux issues (the doctors warned us about that). We went back to the thickener on Sunday and he seems to be eating better again.
After the swallow study, we met with two neonatologists who worked with Brady during his hospital stay. They gave us the most positive report we've received to date. They aren't at all concerned about the dark spot on the back of his head. They don't think he'll have any vision problems at all from that injury.
They explained that the brain in that location has a lot of plasticity and recovers from injuries very well. Brady did see an eye doctor two weeks ago and everything is perfect at this point. We will meet again with an eye doctor in 6 months just to be proactive with any possible vision concerns.
They are more concerned about the dark spot on the right side of his brain. The right side of the brain controls the left side of the body. In all of our other appointments, we've heard about increased tone in all four limbs. On Friday they said it was only on the left side and it was only a very slight difference. Ali and I have noticed that Brady's left eye also seems to be droopier at times (especially when he is tired). We don't know what this means for his long term development, but we'll continue to learn more through therapy and our observations.
Yesterday we met with Brady's pediatrician. Once again, he was very impressed with Brady's progress from his last appointment. He said cognitive development is most important at this point and Brady was showing off for him (talking, cooing, laughing, etc.). He also said Brady's tone was minimal on the left side.
We are going to start feeding Brady rice cereal this week. We are also going to reduce his overnight feedings by one hour each week. The goal is to eventually get him eating enough on his own to get rid of his feeding tube.
Today we met with the therapist from the school district. She also was impressed with how Brady is looking and acting. Brady is bringing both of his hands together, bringing his hands to his mouth, grabbing at toys, etc.
All in all, it was a busy week filled with lots of hope. We fully believe in the power of prayer and continue to be amazed at Brady's progress. We can't thank you enough for all of your love and support.
Have a fun and relaxing (and cool) 4th of July!
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, June 24, 2012
APGAR Scores
We received a letter in the mail this week with a detailed evaluation from the neurologist we saw on Monday. The letter was the first time we've learned about Brady's Apgar scores after his birth. The letter also caused us to reflect on how far Brady has come in these past four months.
An Apgar score rates a baby's appearance, pulse, responsiveness, muscle activity, and breathing with a number from 0 to 2 (2 being the strongest rating). The numbers are then totaled out of a maximum of ten.
Here's how each is used to assess a baby's condition at birth:
Activity (muscle tone)
0 Limp; no movement
1 Some flexion of arms and legs
2 Active motion
Pulse (heart rate)
0 No heart rate
1 Fewer than 100 beats per minute
2 At least 100 beats per minute
Grimace (reflex response)
0 No response to airways being suctioned
1 Grimace during suctioning
2 Grimace and pull away, cough, or sneeze during suctioning
Appearance (color)
0 The baby's whole body is completely bluish-gray or pale
1 Good color in body with bluish hands or feet
2 Good color all over
Respiration (breathing)
0 Not breathing
1 Weak cry; may sound like whimpering, slow or irregular breathing
2 Good, strong cry; normal rate and effort of breathing
The neurologist's letter described these numbers from Brady's chart:
"His Apgars were 0 at 1 minute, 2 at 5 minutes, 4 at 10 minutes and 7 at 20 minutes".
This means that Brady showed absolutely no signs of life at one minute of age. Since they don't break down the scores by category, we would need to guess where he earned those points as time went on. While they were working on Brady, the anesthesiologist came over and told us that Brady was "starting to pink up a bit". I would guess that Brady probably had a trace heartbeat and some color at 5 minutes old giving him those two points. By 10 minutes old he might have moved a little and started breathing a little on his own (with help of ventilator). By 20 minutes old he was still very sick and struggling to survive.
It's haunting to read the Apgar scores and think about those 20 minutes. I'll never forget seeing Brady come out limp. I'll never forget that silence. I'll never forget the look on the doctor's face when the nurse called for the first Code Blue.
Ali kept asking me what was going on and I couldn't answer her. She couldn't see anything because of the sheets in front of her face. She started to struggle and try to free her arms that were strapped down. I looked at the anesthesiologist, he nodded at me, and he gave her some medicine to knock her out for a few minutes.
The anesthesiologist was the first one to give us some hope. He said Brady was getting some color and was going to be fine. It's amazing how your life flashes before your eyes when you go through a moment like that.
The neurologist's letter also talked about Brady's long road to health while he was in the hospital:
"He required positive pressure ventilation, chest compressions and intubation after delivery. He was intubated for a total of five days before being extubated. His neonatal course was complicated by hypotension (low blood pressure) requiring dopamine and dobutamine, thrombocytopenia (platelets in blood), disseminated intravascular coagulation (blood clotting), transaminitis (liver), hypoglycemia (low blood sugar), hyperglycemia (high blood sugar), meconium in lungs, and neonatal seizure. He also required a gastrojejunostomy tube before being discharged to home on April 7, 2012".
It's hard to believe, but the doctors and nurses said Brady was much healthier when he arrived at Amplatz than they expected. Everyone kept talking about how sick Brady was those first few days. Looking back on it now, we didn't understand how hard he was struggling to survive. Almost all of his organs were out of whack.
For six weeks we watched Brady grow stronger until he was healthy enough to come home. His feeding tube is a daily reminder that he's still a work in progress.
The neurologist's letter also described our biggest concerns moving forward:
"An MRI scan was obtained which did reveal a parenchymal hemorrhagic infarction. The areas infected included the left occipital lobe adjacent to the occipital horn in the left lateral ventricle (1.2 cm x 1.2 cm) and a second hypodense area noted in the periventricular white matter on the right corona radiata (5mm in diameter). He had focal brain injuries as well as a global injury that is indicated by the increased tone in his arms and legs".
We know that Brady's brain is not normal. The "dark spots" on his brain were caused by the lack of blood and oxygen during his birth and a possible seizure during his transport to Amplatz. There are still so many unknowns about how those brain injuries will affect our son in the future.
The neurologist's letter also provides us with a great amount of hope:
"Brady was a very bright, alert, young baby who was cooing and smiling throughout the visit. He would raise his hands up and down and flex his legs in excitement. He was able to track me as I moved around the room. No abnormal movement was noted. He showed all normal reflexes for his age".
We're so proud of our miracle baby. We're also so thankful for all of the prayers and words of encouragement. Thanks for everything!
With love,
Tyler, Ali, Ava, Casey and Brady
P.S. We've added a couple of pictures from Brady's four month photo shoot. Click on "see all photos" under the Super Brady picture to see them.
An Apgar score rates a baby's appearance, pulse, responsiveness, muscle activity, and breathing with a number from 0 to 2 (2 being the strongest rating). The numbers are then totaled out of a maximum of ten.
Here's how each is used to assess a baby's condition at birth:
Activity (muscle tone)
0 Limp; no movement
1 Some flexion of arms and legs
2 Active motion
Pulse (heart rate)
0 No heart rate
1 Fewer than 100 beats per minute
2 At least 100 beats per minute
Grimace (reflex response)
0 No response to airways being suctioned
1 Grimace during suctioning
2 Grimace and pull away, cough, or sneeze during suctioning
Appearance (color)
0 The baby's whole body is completely bluish-gray or pale
1 Good color in body with bluish hands or feet
2 Good color all over
Respiration (breathing)
0 Not breathing
1 Weak cry; may sound like whimpering, slow or irregular breathing
2 Good, strong cry; normal rate and effort of breathing
The neurologist's letter described these numbers from Brady's chart:
"His Apgars were 0 at 1 minute, 2 at 5 minutes, 4 at 10 minutes and 7 at 20 minutes".
This means that Brady showed absolutely no signs of life at one minute of age. Since they don't break down the scores by category, we would need to guess where he earned those points as time went on. While they were working on Brady, the anesthesiologist came over and told us that Brady was "starting to pink up a bit". I would guess that Brady probably had a trace heartbeat and some color at 5 minutes old giving him those two points. By 10 minutes old he might have moved a little and started breathing a little on his own (with help of ventilator). By 20 minutes old he was still very sick and struggling to survive.
It's haunting to read the Apgar scores and think about those 20 minutes. I'll never forget seeing Brady come out limp. I'll never forget that silence. I'll never forget the look on the doctor's face when the nurse called for the first Code Blue.
Ali kept asking me what was going on and I couldn't answer her. She couldn't see anything because of the sheets in front of her face. She started to struggle and try to free her arms that were strapped down. I looked at the anesthesiologist, he nodded at me, and he gave her some medicine to knock her out for a few minutes.
The anesthesiologist was the first one to give us some hope. He said Brady was getting some color and was going to be fine. It's amazing how your life flashes before your eyes when you go through a moment like that.
The neurologist's letter also talked about Brady's long road to health while he was in the hospital:
"He required positive pressure ventilation, chest compressions and intubation after delivery. He was intubated for a total of five days before being extubated. His neonatal course was complicated by hypotension (low blood pressure) requiring dopamine and dobutamine, thrombocytopenia (platelets in blood), disseminated intravascular coagulation (blood clotting), transaminitis (liver), hypoglycemia (low blood sugar), hyperglycemia (high blood sugar), meconium in lungs, and neonatal seizure. He also required a gastrojejunostomy tube before being discharged to home on April 7, 2012".
It's hard to believe, but the doctors and nurses said Brady was much healthier when he arrived at Amplatz than they expected. Everyone kept talking about how sick Brady was those first few days. Looking back on it now, we didn't understand how hard he was struggling to survive. Almost all of his organs were out of whack.
For six weeks we watched Brady grow stronger until he was healthy enough to come home. His feeding tube is a daily reminder that he's still a work in progress.
The neurologist's letter also described our biggest concerns moving forward:
"An MRI scan was obtained which did reveal a parenchymal hemorrhagic infarction. The areas infected included the left occipital lobe adjacent to the occipital horn in the left lateral ventricle (1.2 cm x 1.2 cm) and a second hypodense area noted in the periventricular white matter on the right corona radiata (5mm in diameter). He had focal brain injuries as well as a global injury that is indicated by the increased tone in his arms and legs".
We know that Brady's brain is not normal. The "dark spots" on his brain were caused by the lack of blood and oxygen during his birth and a possible seizure during his transport to Amplatz. There are still so many unknowns about how those brain injuries will affect our son in the future.
The neurologist's letter also provides us with a great amount of hope:
"Brady was a very bright, alert, young baby who was cooing and smiling throughout the visit. He would raise his hands up and down and flex his legs in excitement. He was able to track me as I moved around the room. No abnormal movement was noted. He showed all normal reflexes for his age".
We're so proud of our miracle baby. We're also so thankful for all of the prayers and words of encouragement. Thanks for everything!
With love,
Tyler, Ali, Ava, Casey and Brady
P.S. We've added a couple of pictures from Brady's four month photo shoot. Click on "see all photos" under the Super Brady picture to see them.
Tuesday, June 19, 2012
Appointments, Appointments, Appointments
We brought Ava back to the doctor yesterday and her legs are now almost completely healed.
We met with a neurologist from Gillette Children's Hospital today. She did an evaluation of Brady and also went over Brady's brain MRI with us (the one taken at Amplatz).
She pretty much echoed everything else we've been hearing lately. Brady was smiling and cooing the entire time during her evaluation, and she was very impressed with everything cognitive (tracking with eyes, talking, etc.).
She said Brady had muscle stiffness in his arms and his legs, but she's optimistic that therapy will help him. She wanted us to set up a number of more appointments for the next few weeks.
Brady will do an EEG brain test for two hours on Monday. Because of Brady's brain injuries, there still is some concern for seizures. Brady has been on seizure medicine since the day of his birth. The EEG exam will give us a better idea of his current brain activity and whether or not we can start weening him from the seizure medicine.
We will have a follow up appointment with the neurologist on Tuesday to go over the EEG results.
Brady also has an appointment for physical therapy at Gillette Children's on Tuesday. We will have these appointments every other week until October, and then they will reevaluate and create a new plan (or continue the existing treatment).
The neurologist also asked us to schedule an appointment with a Physical Muscle & Rehabilitation (PM&R) doctor at Gillette in August. The PM&R doctor will direct the rehabilitation team that may include physical or occupational therapists, speech-language pathologists, social workers, etc.
Because of Brady's birth history (collapsed lung due to meconium) and the fact that his breaths are still fast and shallow, the neurologist also asked us to make an appointment to see a pulmonary specialist at Gillette in October.
Got all of that? Whew.
In addition, Brady saw the home care nurse today. He now weighs 16 pounds (90th percentile), and is 24 inches long (70th percentile). Since Brady is doing well with his growth, that nurse might not need to visit in the future.
The school district's therapist is coming on Thursday to work with Brady.
Next Friday we also have our four month follow up appointment at Amplatz. They will do their evaluation of him and give us their thoughts for future treatment. They will also do another swallow study at that time to see if Brady still has any aspiration problems and if we can eliminate his thickener.
I remember back to our time in the NICU. Once we felt confident Brady was going to live, we started asking questions about his future. They told us that the four month follow up appointment would answer some of our questions. At the time, four months seemed like such a long time to wait. It's hard to believe that appointment is next week.
These four months have really flown by. We're so proud of Brady's progress, and we're hopeful that all of his upcoming appointments will continue to help him grow more strong and healthy.
Thanks for your constant support and encouragement. We feel so blessed to be surrounded by such wonderful family and friends.
With love,
Tyler, Ali, Ava, Casey and Brady
We met with a neurologist from Gillette Children's Hospital today. She did an evaluation of Brady and also went over Brady's brain MRI with us (the one taken at Amplatz).
She pretty much echoed everything else we've been hearing lately. Brady was smiling and cooing the entire time during her evaluation, and she was very impressed with everything cognitive (tracking with eyes, talking, etc.).
She said Brady had muscle stiffness in his arms and his legs, but she's optimistic that therapy will help him. She wanted us to set up a number of more appointments for the next few weeks.
Brady will do an EEG brain test for two hours on Monday. Because of Brady's brain injuries, there still is some concern for seizures. Brady has been on seizure medicine since the day of his birth. The EEG exam will give us a better idea of his current brain activity and whether or not we can start weening him from the seizure medicine.
We will have a follow up appointment with the neurologist on Tuesday to go over the EEG results.
Brady also has an appointment for physical therapy at Gillette Children's on Tuesday. We will have these appointments every other week until October, and then they will reevaluate and create a new plan (or continue the existing treatment).
The neurologist also asked us to schedule an appointment with a Physical Muscle & Rehabilitation (PM&R) doctor at Gillette in August. The PM&R doctor will direct the rehabilitation team that may include physical or occupational therapists, speech-language pathologists, social workers, etc.
Because of Brady's birth history (collapsed lung due to meconium) and the fact that his breaths are still fast and shallow, the neurologist also asked us to make an appointment to see a pulmonary specialist at Gillette in October.
Got all of that? Whew.
In addition, Brady saw the home care nurse today. He now weighs 16 pounds (90th percentile), and is 24 inches long (70th percentile). Since Brady is doing well with his growth, that nurse might not need to visit in the future.
The school district's therapist is coming on Thursday to work with Brady.
Next Friday we also have our four month follow up appointment at Amplatz. They will do their evaluation of him and give us their thoughts for future treatment. They will also do another swallow study at that time to see if Brady still has any aspiration problems and if we can eliminate his thickener.
I remember back to our time in the NICU. Once we felt confident Brady was going to live, we started asking questions about his future. They told us that the four month follow up appointment would answer some of our questions. At the time, four months seemed like such a long time to wait. It's hard to believe that appointment is next week.
These four months have really flown by. We're so proud of Brady's progress, and we're hopeful that all of his upcoming appointments will continue to help him grow more strong and healthy.
Thanks for your constant support and encouragement. We feel so blessed to be surrounded by such wonderful family and friends.
With love,
Tyler, Ali, Ava, Casey and Brady
Wednesday, June 6, 2012
End of the School Year
We need to apologize for being late with this journal entry. It's been a crazy week with the end of the school year and the end of track season. Just when we thought our lives couldn't get any more hectic, Ava wanted to join in the fun.
Ava had a runny nose for a few weeks that started to cause a sore on her nose. She also started to get a rash on her legs on Wednesday. They looked more like bug bites on Thursday. When she woke up on Friday morning, they hadn't gotten any better, so Ali brought her to the doctor. The doctors concluded that she had strep throat, impetigo (an infection) on her nose and thought she might also have HSP (broken blood vessels in her legs caused by her body fighting the strep and impetigo).
When she woke up on Saturday, her entire legs were covered with bruises and her ankles started to swell (this confirmed the HSP). By Saturday night, she couldn't walk at all. We put her on an antibiotic, some ibuprofen, and iced her ankles for the rest of the weekend. She went back to the doctor on Monday and was cleared to go back to school.
The doctors said it can take 4-6 week for her legs to look "normal" again. However, Ava's legs looked much better today (only some minor bruising and splotches). She's looking forward to dancing in the school's talent show on Friday.
There is a concern for kidney damage with HSP, so we need to go back to the doctor on the 18th to make sure everything is okay.
As for Brady, the home care nurse visited today and he is now 15 lbs, 1 ounce and has grown one inch. We continue to supplement his breast milk with formula on every feeding and it seems to be working well.
We have a bunch of appointments coming up. Brady will see a neurologist at Gillette Children's in Burnsville on 6/26. He will go to his NICU follow up at Amplatz on 6/29. We're also hoping to have another swallow study at that time.
We also have PT scheduled with Gillette Children's every other week for the next four months. The school district's therapist will also continue to visit every two weeks.
Brady is now starting to get a little ticklish and is laughing for longer periods of time. He continues to be a very happy baby and we're hopeful that his numerous doctor appointments and therapy sessions will help him grow up strong and healthy.
We're looking forward to the summer and spending more time together as a family. We hope all of you have a relaxing summer as well. As always, thanks for the messages, words of encouragement and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Ava had a runny nose for a few weeks that started to cause a sore on her nose. She also started to get a rash on her legs on Wednesday. They looked more like bug bites on Thursday. When she woke up on Friday morning, they hadn't gotten any better, so Ali brought her to the doctor. The doctors concluded that she had strep throat, impetigo (an infection) on her nose and thought she might also have HSP (broken blood vessels in her legs caused by her body fighting the strep and impetigo).
When she woke up on Saturday, her entire legs were covered with bruises and her ankles started to swell (this confirmed the HSP). By Saturday night, she couldn't walk at all. We put her on an antibiotic, some ibuprofen, and iced her ankles for the rest of the weekend. She went back to the doctor on Monday and was cleared to go back to school.
The doctors said it can take 4-6 week for her legs to look "normal" again. However, Ava's legs looked much better today (only some minor bruising and splotches). She's looking forward to dancing in the school's talent show on Friday.
There is a concern for kidney damage with HSP, so we need to go back to the doctor on the 18th to make sure everything is okay.
As for Brady, the home care nurse visited today and he is now 15 lbs, 1 ounce and has grown one inch. We continue to supplement his breast milk with formula on every feeding and it seems to be working well.
We have a bunch of appointments coming up. Brady will see a neurologist at Gillette Children's in Burnsville on 6/26. He will go to his NICU follow up at Amplatz on 6/29. We're also hoping to have another swallow study at that time.
We also have PT scheduled with Gillette Children's every other week for the next four months. The school district's therapist will also continue to visit every two weeks.
Brady is now starting to get a little ticklish and is laughing for longer periods of time. He continues to be a very happy baby and we're hopeful that his numerous doctor appointments and therapy sessions will help him grow up strong and healthy.
We're looking forward to the summer and spending more time together as a family. We hope all of you have a relaxing summer as well. As always, thanks for the messages, words of encouragement and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
Monday, May 28, 2012
Gillette Children's Hospital
The occupational therapist from the school district visited our house on Tuesday and did a few exercises with Brady and Ali. They will visit again in a couple of weeks.
The home care nurse visited on Wednesday. She weighed him and Brady gained 14 ounces from last week. We've been adding a little formula to each of Brady's bottles and that has seemed to give him the calories necessary to gain weight. She will be back again on Wednesday.
Brady also has an appointment with his pediatrician on Wednesday. Brady will have his follow up appointment with the NICU on June 29.
The biggest change this week is we finally had our first appointment with Gillette Children's Hospital. Ali went to visit a physical therapist at their Burnsville clinic on Tuesday.
After the evaluation, the biggest concern is Brady's increased tone through the lower extremities including adductors (hips), hip extensors (ability to pull knee down and backward), knee extensors and plantarflexors (ankles). There was also increased tone with elbow extension, wrist extension and finger extension. They also said Brady has a slight left head tilt and doesn't move his head equally both ways (neck muscle tone issues).
Muscle tone is defined by muscle resistance when it is being stretched. Muscle tone can be estimated using a 5 point Ashworth scale. They are: 1) no increase in muscle tone; 2) slight increase giving a catch when part is moved in flexion or extension; 3) more marked increase in tone but only after part is easily flexed; 4) considerable increase in tone; and 5) passive movement is difficult and affected part is rigid in flexion or extension.
Brady's scores on an Ashworth scale were between a 2-3 for all of those areas (1 is normal). The therapist also said that those scores weren't consistent. Sometimes he scores better when you try to move his arms and legs. Obviously, you never want to hear that your baby isn't "normal". However, we're hopeful that we'll be able to work with therapists to improve Brady's muscle tone over time. The therapists showed Ali a number of exercises to stretch those areas with Brady.
The people of Gillette Children's Hospital will work with Brady every other week for the next four months and then do another evaluation.
Brady has really turned into a happy baby. He is constantly smiling, laughing, and cooing. Ava and Casey are fantastic helpers and they both love talking to him and getting him to smile.
We had an active Memorial Day weekend bowling, boating and swimming. We hope all of you were able to enjoy the nice weather and extra time with your families.
With love,
Tyler, Ali, Ava, Casey and Brady
The home care nurse visited on Wednesday. She weighed him and Brady gained 14 ounces from last week. We've been adding a little formula to each of Brady's bottles and that has seemed to give him the calories necessary to gain weight. She will be back again on Wednesday.
Brady also has an appointment with his pediatrician on Wednesday. Brady will have his follow up appointment with the NICU on June 29.
The biggest change this week is we finally had our first appointment with Gillette Children's Hospital. Ali went to visit a physical therapist at their Burnsville clinic on Tuesday.
After the evaluation, the biggest concern is Brady's increased tone through the lower extremities including adductors (hips), hip extensors (ability to pull knee down and backward), knee extensors and plantarflexors (ankles). There was also increased tone with elbow extension, wrist extension and finger extension. They also said Brady has a slight left head tilt and doesn't move his head equally both ways (neck muscle tone issues).
Muscle tone is defined by muscle resistance when it is being stretched. Muscle tone can be estimated using a 5 point Ashworth scale. They are: 1) no increase in muscle tone; 2) slight increase giving a catch when part is moved in flexion or extension; 3) more marked increase in tone but only after part is easily flexed; 4) considerable increase in tone; and 5) passive movement is difficult and affected part is rigid in flexion or extension.
Brady's scores on an Ashworth scale were between a 2-3 for all of those areas (1 is normal). The therapist also said that those scores weren't consistent. Sometimes he scores better when you try to move his arms and legs. Obviously, you never want to hear that your baby isn't "normal". However, we're hopeful that we'll be able to work with therapists to improve Brady's muscle tone over time. The therapists showed Ali a number of exercises to stretch those areas with Brady.
The people of Gillette Children's Hospital will work with Brady every other week for the next four months and then do another evaluation.
Brady has really turned into a happy baby. He is constantly smiling, laughing, and cooing. Ava and Casey are fantastic helpers and they both love talking to him and getting him to smile.
We had an active Memorial Day weekend bowling, boating and swimming. We hope all of you were able to enjoy the nice weather and extra time with your families.
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, May 20, 2012
Rolling Over and Adding Formula
Brady went to see a pediatrician on Monday because we had some concerns about the area around his feeding tube. The area looked red and swollen and there was some fluid coming out around the tube. The doctor said it wasn't infected but gave us some topical antibiotics to help prevent any future infections.
The school district OT came on Tuesday. She spent an hour and a half with Ali and Brady going over paperwork and discussing his progress. The OT said Brady's muscle tone looked normal for a child his age.
The home care nurse came on Wednesday. She was also concerned about the area around his feeding tube. She was also concerned that Brady hasn't gained as much weight as he should.
We contacted our pediatrician to talk about Brady's weight. The doctor had recommended Brady getting 900 ml each day. We consistently have been feeding him between 800 and 850 ml. Instead of giving him a bolus feed through his tube during the day, the doctor recommended adding a teaspoon of formula to each of Brady's bottles. They believe this will give him enough calories to gain weight. We've done that for the past few days, and Brady drinks the bottles of breast milk with formula very well.
I placed Brady on his tummy twice on Sunday and left the room briefly while chasing the other kids around the house. When I came back into the room, Brady was laying on his back and smiling. Hopefully it's a good sign of things to come for Brady to have that strength and body control at 12 weeks. He continues to smile and coo more and more. Ava and Casey really love interacting with him.
Brady will have his initial appointment with Gillette Children's Hospital (in Burnsville) on Tuesday. We've heard nothing but great things about their program, and we're anxious to hear their thoughts about Brady's progress and future treatment. The school district OT will also visit our house to work with Brady on Tuesday. The home care nurse is coming to our house on Wednesday.
We want to thank you again for all of the words of encouragement and prayers. We're hoping all of you have a blessed week.
With love,
Tyler, Ali, Ava, Casey and Brady
The school district OT came on Tuesday. She spent an hour and a half with Ali and Brady going over paperwork and discussing his progress. The OT said Brady's muscle tone looked normal for a child his age.
The home care nurse came on Wednesday. She was also concerned about the area around his feeding tube. She was also concerned that Brady hasn't gained as much weight as he should.
We contacted our pediatrician to talk about Brady's weight. The doctor had recommended Brady getting 900 ml each day. We consistently have been feeding him between 800 and 850 ml. Instead of giving him a bolus feed through his tube during the day, the doctor recommended adding a teaspoon of formula to each of Brady's bottles. They believe this will give him enough calories to gain weight. We've done that for the past few days, and Brady drinks the bottles of breast milk with formula very well.
I placed Brady on his tummy twice on Sunday and left the room briefly while chasing the other kids around the house. When I came back into the room, Brady was laying on his back and smiling. Hopefully it's a good sign of things to come for Brady to have that strength and body control at 12 weeks. He continues to smile and coo more and more. Ava and Casey really love interacting with him.
Brady will have his initial appointment with Gillette Children's Hospital (in Burnsville) on Tuesday. We've heard nothing but great things about their program, and we're anxious to hear their thoughts about Brady's progress and future treatment. The school district OT will also visit our house to work with Brady on Tuesday. The home care nurse is coming to our house on Wednesday.
We want to thank you again for all of the words of encouragement and prayers. We're hoping all of you have a blessed week.
With love,
Tyler, Ali, Ava, Casey and Brady
Subscribe to:
Comments (Atom)