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
Monday, May 28, 2012
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
Sunday, May 13, 2012
Happy Mother's Day
Brady had an appointment with his pediatrician on Wednesday.
Dr. Tim gave him his two month vaccinations (one oral and four shots in the leg). They wanted Brady to take Tylenol to help prevent any seizures. Ali said Brady barely cried (maybe he has a high pain tolerance from everything he has endured over the past 10 weeks).
Brady now weighs 13 pounds, 6 ounces and is 24 inches long. Dr. Tim increased his daily feeding amount to 900 ml. Ali and I will need to work hard to get him that amount every day. Brady usually takes between 800-850 ml, so we might need to start giving him a bolus feed with his tube during the day. Brady's new feeding tube seems to be working well.
Dr. Tim was very pleased that Brady was showing signs of a normal two-month-old. Brady's neck is strong. He is following movement with his eyes. He is smiling and cooing. He really enjoys being held and is becoming more aware of his surroundings. Here's a quick video of Brady smiling and cooing: http://youtu.be/4eHEIFa5KCQ
Dr. Tim said we might start on solid foods a little earlier than most babies, because it's thicker than milk and easier for Brady to eat.
The one concern Dr. Tim had was the muscle tone in Brady's legs. Brady was a little stiff during his evaluation. Dr. Tim is hopeful that Brady's upcoming therapy will be preventative for any physical limitations.
Dr. Tim is setting up another swallow study at the U of M and a visit with a neurologist there as well. We will have another appointment with Dr. Tim in one month.
On Tuesday, the school district's occupational therapist will come to work with Brady. On Wednesday, the home care nurse will be coming to evaluate Brady. One week from Tuesday we will start with Gillette Children's Hospital therapy as well.
We had a fun and busy weekend as a family. We had a track meet and birthday party on Saturday. We spent time at both grandparents' houses on Sunday.
Today was a special day to say thank you to my wife, mother, and mother-in-law for all of the sacrifices they have made over the past ten weeks. We hope all of you had a wonderful Mother's Day as well.
With love,
Tyler, Ali, Ava, Casey and Brady
Dr. Tim gave him his two month vaccinations (one oral and four shots in the leg). They wanted Brady to take Tylenol to help prevent any seizures. Ali said Brady barely cried (maybe he has a high pain tolerance from everything he has endured over the past 10 weeks).
Brady now weighs 13 pounds, 6 ounces and is 24 inches long. Dr. Tim increased his daily feeding amount to 900 ml. Ali and I will need to work hard to get him that amount every day. Brady usually takes between 800-850 ml, so we might need to start giving him a bolus feed with his tube during the day. Brady's new feeding tube seems to be working well.
Dr. Tim was very pleased that Brady was showing signs of a normal two-month-old. Brady's neck is strong. He is following movement with his eyes. He is smiling and cooing. He really enjoys being held and is becoming more aware of his surroundings. Here's a quick video of Brady smiling and cooing: http://youtu.be/4eHEIFa5KCQ
Dr. Tim said we might start on solid foods a little earlier than most babies, because it's thicker than milk and easier for Brady to eat.
The one concern Dr. Tim had was the muscle tone in Brady's legs. Brady was a little stiff during his evaluation. Dr. Tim is hopeful that Brady's upcoming therapy will be preventative for any physical limitations.
Dr. Tim is setting up another swallow study at the U of M and a visit with a neurologist there as well. We will have another appointment with Dr. Tim in one month.
On Tuesday, the school district's occupational therapist will come to work with Brady. On Wednesday, the home care nurse will be coming to evaluate Brady. One week from Tuesday we will start with Gillette Children's Hospital therapy as well.
We had a fun and busy weekend as a family. We had a track meet and birthday party on Saturday. We spent time at both grandparents' houses on Sunday.
Today was a special day to say thank you to my wife, mother, and mother-in-law for all of the sacrifices they have made over the past ten weeks. We hope all of you had a wonderful Mother's Day as well.
With love,
Tyler, Ali, Ava, Casey and Brady
Sunday, May 6, 2012
Smiling and Laughing
It was another great week for Brady and our family. Brady's new tube seems to be working very well. He has settled back into his normal routines and is a very happy baby.
On Tuesday the school district sent an Early Childhood Special Education director and an occupational therapist to our house. Ali answered their questions about Brady (his new tube, how his past week went, his behaviors, etc.). They are working on a care plan for Brady. The occupational therapist will come back in two weeks to start working with Brady.
On Wednesday a home care nurse from Children's Hospital came to our house. She took Brady's vitals and answered any questions that Ali had. She will also be back in two weeks to evaluate Brady.
Brady is now awake for long stretches during the day and continues to sleep through the night. He really enjoys talking to us. He is constantly smiling and now is starting to laugh a little. He also is getting very strong with holding up his head and body.
We've also noticed that his reflux has really improved. He hasn't had any major spit ups for several days and doesn't seem to arch in pain as much when he eats. He is now eating between 800 and 850 ml per day. He takes about half of that by bottle during the day and then we feed him the remainder at night.
Ali continues to do an amazing job of taking care of Brady and the rest of our family. Brady will have another checkup with his pediatrician on Wednesday and we'll learn more about his progress then.
With love,
Tyler, Ali, Ava, Casey and Brady
On Tuesday the school district sent an Early Childhood Special Education director and an occupational therapist to our house. Ali answered their questions about Brady (his new tube, how his past week went, his behaviors, etc.). They are working on a care plan for Brady. The occupational therapist will come back in two weeks to start working with Brady.
On Wednesday a home care nurse from Children's Hospital came to our house. She took Brady's vitals and answered any questions that Ali had. She will also be back in two weeks to evaluate Brady.
Brady is now awake for long stretches during the day and continues to sleep through the night. He really enjoys talking to us. He is constantly smiling and now is starting to laugh a little. He also is getting very strong with holding up his head and body.
We've also noticed that his reflux has really improved. He hasn't had any major spit ups for several days and doesn't seem to arch in pain as much when he eats. He is now eating between 800 and 850 ml per day. He takes about half of that by bottle during the day and then we feed him the remainder at night.
Ali continues to do an amazing job of taking care of Brady and the rest of our family. Brady will have another checkup with his pediatrician on Wednesday and we'll learn more about his progress then.
With love,
Tyler, Ali, Ava, Casey and Brady
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