April 3, 2005 Welcome to April everyone! I hope you remembered to change your clocks today! Spring Forward!
Jacob News...No seizures in a week! How wonderful it is to say that! I got in touch with Jacob's Neurologist. He looked at the Phenobarbital level taken at the ER last week and found it to be too low, so he increased the dose. I will take J to the Pediatrician in two weeks for a level check and go from there. For the last few days, J has been feverish on and off. At this point, I think it is due to teething, but I am not perfectly sure. Brett and I have been watching him close and will call his Pediatrician Monday if he still isn't feeling better.
Saturday afternoon J visited with his Grandma and Grandpa Smith, as well as his uncle Curt and Cousin Alec, who were all in town for Alec's hockey tournament. We had a late lunch of Long John Silvers and hung out for a while until Alec's afternoon game. It was very nice to see the family.
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April 8, 2005 It's been a good week here in Fighter Land. Jacob's cold is still lingering, but he is feeling much better. On Tuesday, Jacob went to see his Ophthalmologist, Dr. Johnson. Brett took him to the appointment so I could stay home and get homework done. Brett told Dr. J that Jacob hasn't been wearing his glasses (or contact lens because we lost it and are waiting for a new one), because he pulls them off his face. After an examination, Dr. Johnson agreed with Brett that the glasses are not helping Jacob and said he didn't have to wear them anymore. He would still like J to wear the contact lens (in the right eye); because he wants to stimulate the brain with whatever vision, he may have, even if only a small amount.
Brett and I have come to terms with the fact that Jacob is blind. He may have some light perception, but we won't know anything for sure until he can tell us himself. Maybe the future will hold a medical breakthrough that will help him, but we won't hold our breath. We know we are blessed with our beautiful, strong, miracle of a son. We know times will be hard, teaching him about the world and showing him how to get through each day without sight, but we have come this far and will only become stronger each day as a family.
In Mom News.... I begged Brett to let me purchase a laptop with part of our tax return and after much reservation, he said yes! I bought a brand new Dell laptop and am really enjoying it. I like being able to do homework (my classes are online) comfortably on the couch or at the dining room table, while J plays nearby. Another thing I will be able to do with my new toy is start writing my book. I will begin soon (Probably after finals) and will write a little each day until it is complete. I will keep you up to date on my progress!
April 14, 2005 This morning I nursed Jacob through another seizure and high fever. The seizure was mild compared to those of the past couple months, but scary nonetheless. I waited longer than usual before giving him Diastat, because I wasn't perfectly sure he was seizing. Within five minutes of getting the medication, he stopped trembling and arching his back. Soon thereafter, the fever showed up. Tylenol, cool water and patients did the trick. I feel so bad for my Fighter. I called his neurologist's office this afternoon and they requested a blood sample to check J's Phenobarbital level. I am taking him to his Pediatrician in the morning and so I will have them take a sample then. After calling the neurologist, I called his pediatrician concerned about the yellow tint to his skin. I thought perhaps it was his diet, but lying off the yellow veggies hasn't changed things, so I am taking him in to be checked out.
To everyone who has sponsored me in this year's Walk America for March of Dimes...I thank you so much for your support. This is my first year taking part in the event (needless today the past two years have been more than eventful).
For those of you who have purchased Saving Babies Bracelets through our site, they should arrive within the next week or two and I will mail them to you when they do. If you haven't ordered any, and would like to, please go to the Bracelet Order page for information!
April 19, 2005 I have lots of Fighter News to share with you!
Jacob had blood work done Friday to check his Phenobarbital level. Today a nurse (at the Pediatrician's office) told me the level looked normal, but she would call if the Doctor thought otherwise. I will be calling the Neurologists office to follow up. I would like to know what other tests will be done to find the reason for the breakthrough seizures.
Also on Friday, after his appointment, Grandma Horton and I took Jacob to the Zoo for the first time. He didn't have fun feeding the animals, but had a great time kicking back in the stroller and listening to all the cool animal sounds. We took a few pictures; check them out on the Photo Gallery.
Saturday night I decided to take Jacob to the NICU for a visit. I purposely took him in the evening in hopes of catching the night shift workers (whom Jacob hasn't seen since he left in January 2004). Well, I picked a great night because most of his old nurses, including Patty who admitted him the day he was born, were there. Also, working was Jacob's NICU Doctor, Dr. Roan. He was able to visit with us for about 15 minutes. He is so happy to see how big and healthy Jacob is. I thanked him and the nurses again for all they did for Jacob and for Brett and I. Thank God for those wonderful people!
Sunday afternoon Grandma and Grandpa Horton came to our house for a nice BBQ. While Brett cooked the chops, I set up Jacob's new outside swing. A swing set left behind by the previous owners provided the perfect spot for it. And as you will see in the pictures, Jacob had a great time! After dinner, all of us sat in the backyard enjoying the wonderful weather and talking about life!
Thanks again to everyone who has sponsored me in the March of Dimes Walk America, as well as those who have purchased bracelets! Your support means so much!
April 22, 2005 Poor Jacob is sick again! On Tuesday, he had a runny nose, then Wednesday and Thursday he began breathing heavily and coughing. I took him to his Pediatrician, Dr. H., Thursday afternoon. She listened to his lungs, looked in his ears and mouth, then sent me to another building to have a chest x-ray done. She wanted to make sure he wasn't developing pneumonia. I returned to Dr. H's office with the x-ray films and she looked at them. He had some gunk, but no sign of pneumonia. To be on the safe side, she gave Jacob a breathing treatment in the office and sent a machine home for home treatments. When Dr. H looked at J's ears, she saw redness in both and fluid in the right, so she prescribed antibiotics for that. Poor kid!
Also on Thursday, I heard back from the neurologist's office about J's Phenobarb level. Since it is on the low side, I was told to increase his dose by 1/2 a pill each night. Another blood check will be done in a few weeks. It's been a week since his last seizure and I hope that with the increase in his meds, he won't have another one, not for a while at least.
Please keep the little guy in your prayers! He's been through so much and is such a trooper! :)
April 27, 2005 Jacob is feeling much better! It's Mommy who is sick now! Each time Jacob gets sick, so do I.
The Fighter has done some amazing things this week! He crawled and said "mama." The first time he crawled was on Saturday at Grandma and Grandpa Horton's house. I didn't see him that time, but I did Monday night at home. He goes forward one or two feet then sits up! It's just awesome! And when he said "mama," my heart melted! He is very vocal already, but hasn't made out words until now. Tonight when Brett told him "no" for rocking and hitting his head (repeatedly on the coffee table), he whimpered and said "mamamama." It was hilarious! (Note: Due to his vision loss, J likes to find things with his head, which is normal, but he will find things like a wall or table while playing on the floor and then start rocking and hitting his head over and over. We were advised by his therapists not to allow him to do that.)
This week has been good so far! We are looking forward to the March of Dimes "Walk America" this Saturday! Thanks again to those who have sponsored me!
April 30, 2005 This morning was the March of Dimes 'Walk America' event! Although I went alone (Brett stayed home with Jacob because it was chilly outside), I had a great time. I met a fellow preemie mom and chatted with her and her son's nurse along the 4-mile trail. With your help, I was able to raise $150 for MOD! Thanks to everyone who sponsored me!
Friday, April 1, 2005
Tuesday, February 1, 2005
February 2005
February 1, 2005 I am in the process of giving www.jacobthefighter.com a whole new look. I thought adding some color would be nice until the change is complete!
In Jacob news, He has had a great week! Although he has been without a contact lens or glasses (they are a bit large and fall to the tip of his nose), I have seen him react to the lights of a new toy (thank you grandma Horton!). Just when I thought there was no hope for vision, he showed me what he could do! I haven't reported the news to his eye doctors yet, but I will soon. They will be pleased!
Later this week J will see one of his therapists and we hope she sees the progress he has made with standing, crawling and walking. Brett and I have been working with him each day and it seems to be paying off.
The little guy was with me in the den yesterday (which is an addition to this home and sits on a nice cement foundation) when he was sitting on the floor and fell back, hitting his head. He cried for a moment, then was back to blowing raspberries and laughing! That's my miracle boy!
February 8, 2005 Jacob gave Brett and me quite a scare late Sunday night. We had been out all day at a super bowl party, which tired him out, so he went to bed soon after we got home. He woke up crying at 3:00am so I went, got him from his crib, and lay with him on the couch, trying to calm him back to sleep. Immediately I noticed he was shaking terribly, as if he was shivering. I sat up and tried to lay him down in front of me, but he wouldn't let me put him on his back. He kept shaking and arching his back. I woke up Brett and we agreed that it looked like he was having a seizure. Brett called 911 and the fire department and ambulance arrived within minutes. They asked us if we had taken his temperature, which we hadn't because he didn't feel warm. Brett grabbed the thermometer and we took his temperature. It was a very low-grade fever. The paramedics wanted to get him to the hospital, so they asked me to get J a blanket and get on some shoes. I carried J out to the ambulance while Brett got the house locked up and got ready to follow in the car. We didn't leave right away because the paramedics tried to get an IV started (which they weren't able to do because they couldn't get a good vein) and got J hooked up to monitors. Although it seemed to me that his heart was racing, his rate was normal. On the way to the hospital, he stopped shaking but felt very warm. At the hospital, he had a rectal (most accurate) temperature of 103. The nurse who cared for him was very nice. She gave him some Motrin and within a short time, his temperature started going down. A doctor came in to talk to us and diagnosed him as having a febrile seizure. A febrile seizure occurs when the body temperature raises very quickly, which then causes convulsions. The doctor told us to give him Motrin or Tylenol and to watch him close, that he did not need to stay over night. He told us to call his Pediatrician in the morning. Febrile seizures have not been shown to cause brain damage; they are just very scary to watch. (Yes, they are!).
We left the hospital and went to four stores near our house in search of meds for J. The first store was closed, the second didn't have anything, and the third was closed, so we ended up at a 24-hour Wal-Mart. We finally made it back home at 5:30am. After feeding, changing and giving him meds, I took J into bed with me, while Brett stayed in the living room to watch TV. We didn't wake until 1:00pm Monday afternoon.
Right now J is feeling much better. Brett and I have no idea where this fever came from, but it left just as quickly as it came and scared the hell out of us in the process. Needless to say, J will be sleeping with me for the next few nights!
February 11, 2005 - Morning Jacob has been feeling much better this week. He has not had a fever since the episode last weekend! To be on the safe side, I called his Neurologist and scheduled an appointment.
Surprisingly, they were able to get him in this afternoon. I want to be sure that the febrile seizure is not at all related to the seizures he had while in the NICU.
Yesterdays home therapy visit was a great one. Not only did J work with his VI therapist, whom he adores, but he also visited with a nutritionist. I gave her a brief history and told her what J's eating habits were like. I told her I gave him formula for his first and last feedings of each day, with whole milk and food in between. She told me that his formula only contains two calories more per ounce than whole milk, so we could stop formula and go to whole milk full time! Yay for Mom and Dad's pocketbook! Oh, I was so happy to hear that!
Next week, on February 17th one of my best friends, Denise, who I have known for many years, will be flying into Wichita from Minneapolis for a visit. This will be her first time meeting J! She is very excited!
February 11, 2005 - Evening J's Neurology appointment went well today, although I did not get the news I expected. Jacob saw Dr. S's PA who isn't convinced that J had a febrile seizure. Given the fact that he wasn't ill before or after the incident, it indicates other possible problems. She wants J to have an EEG, to see how things look. The office is booked for the next six weeks (because she will be taking maternity leave, and all her patients are trying to get in) but J has been put on the cancellation list as a priority. Hopefully he will be able to get in within a week or two.
In the meantime, the PA gave me a prescription for medication to be administered should J have another seizure. The medication takes 3 to 5 minutes to stop the seizure. Once he has the EEG, she will be able to determine whether he needs to be put back on daily seizure medication. Of course, we pray everything turns out fine and he doesn't need medication.
February 23, 2005 It has been a hectic but fun week. On Thursday the 17th, one of my greatest friends, Denise, flew in from Minnesota. Denise and I became friends over 10 years ago while living in California. After attending undergrad at Cornell University, she moved to Minnesota for law school. This was her third trip to Kansas, but her first time seeing Jacob. She had a great time, other than some flight delays for her trip back to MN (she ended up staying an extra night due to a cancelled flight, which meant more time with Jacob!).
On Monday morning, Brett and I took J and drove to Topeka Kansas. Once in town we stopped for lunch, then went over to the Capital Building. We met with Debbie, a representative with Rainbows united, who introduced us to a few people, including other parents. At 3:30pm, we entered a large room where the committee was seated. One at a time, individuals were called to the podium to speak. Parents as well as professionals spoke. When I was called, I approached the podium and introduced myself. I then began reading from the paper I wrote Sunday night. Brett stood next to me holding Jacob. While talking, I looked up to make eye contact with the committee and lost my place when I looked down again. I was quiet embarrassed. Brett whispered "take your time," which made me feel better. When I was done, Brett was called. I returned to my seat with J. Brett told me later that he wasn't nervous until he stood at the podium. He said his legs shook, although I couldn't tell. Others went after us, but we did not stay for the remainder of the meeting.
Brett and I feel honored to have taken part in something so important for the future of Tiny K services in Kansas. We feel that speaking about the wonderful things Rainbows has done for Jacob is the least we can do to show our gratitude. I would jump at the chance to do this again, whether before state officials or otherwise.
If you have any questions, or would like to read what Brett and I read aloud to the Budget Committee, please contact Trish.
February 23, 2005 This morning Jacob went to the Neurologist for an EEG. He was scheduled for a few weeks from now, but a cancellation allowed him to get in sooner. He was sedated for the test, which went well. Afterwards, I took him home for lunch, then returned two hours later for the follow-up and results. I am very happy to report that the EEG was normal, showing no seizure activity. Dr. S said to call if he has another episode, otherwise he doesn't need to see him again until the end of the year! Yay!!
In family news, this morning Brett and I will take J to Winfield, Kansas (about an hour away) to visit a 1-year-old Rat Terrier named Skipper. If all goes well, we will welcome Skipper to our home as our first family pet!
February 28, 2005 We have added a new member to our family! Skipper is a year and a half year old Rat Terrier we adopted through the Cowley County Humane Society. He is fully trained and loves to shake, give you high-fives and cuddle. He loves to sit on your lap and sleep in bed with you, sometimes under the covers! Brett and I know he is a perfect fit for us. He has been really good around Jacob, too, which is very important. Today when Brett went to get some take-out, Skipper went with him! He's a very loveable and friendly dog!
The coming week will be very slow for J with only one appointment on Friday (3/4/05), with his Pediatrician. We will definitely take advantage of the break, because out of the nine appointments J has in March, four of them will be during the week of March 6th. Three therapy visits and one with his Urologist. Busy, busy! It's all very worth it though!
In Jacob news, He has had a great week! Although he has been without a contact lens or glasses (they are a bit large and fall to the tip of his nose), I have seen him react to the lights of a new toy (thank you grandma Horton!). Just when I thought there was no hope for vision, he showed me what he could do! I haven't reported the news to his eye doctors yet, but I will soon. They will be pleased!
Later this week J will see one of his therapists and we hope she sees the progress he has made with standing, crawling and walking. Brett and I have been working with him each day and it seems to be paying off.
The little guy was with me in the den yesterday (which is an addition to this home and sits on a nice cement foundation) when he was sitting on the floor and fell back, hitting his head. He cried for a moment, then was back to blowing raspberries and laughing! That's my miracle boy!
February 8, 2005 Jacob gave Brett and me quite a scare late Sunday night. We had been out all day at a super bowl party, which tired him out, so he went to bed soon after we got home. He woke up crying at 3:00am so I went, got him from his crib, and lay with him on the couch, trying to calm him back to sleep. Immediately I noticed he was shaking terribly, as if he was shivering. I sat up and tried to lay him down in front of me, but he wouldn't let me put him on his back. He kept shaking and arching his back. I woke up Brett and we agreed that it looked like he was having a seizure. Brett called 911 and the fire department and ambulance arrived within minutes. They asked us if we had taken his temperature, which we hadn't because he didn't feel warm. Brett grabbed the thermometer and we took his temperature. It was a very low-grade fever. The paramedics wanted to get him to the hospital, so they asked me to get J a blanket and get on some shoes. I carried J out to the ambulance while Brett got the house locked up and got ready to follow in the car. We didn't leave right away because the paramedics tried to get an IV started (which they weren't able to do because they couldn't get a good vein) and got J hooked up to monitors. Although it seemed to me that his heart was racing, his rate was normal. On the way to the hospital, he stopped shaking but felt very warm. At the hospital, he had a rectal (most accurate) temperature of 103. The nurse who cared for him was very nice. She gave him some Motrin and within a short time, his temperature started going down. A doctor came in to talk to us and diagnosed him as having a febrile seizure. A febrile seizure occurs when the body temperature raises very quickly, which then causes convulsions. The doctor told us to give him Motrin or Tylenol and to watch him close, that he did not need to stay over night. He told us to call his Pediatrician in the morning. Febrile seizures have not been shown to cause brain damage; they are just very scary to watch. (Yes, they are!).
We left the hospital and went to four stores near our house in search of meds for J. The first store was closed, the second didn't have anything, and the third was closed, so we ended up at a 24-hour Wal-Mart. We finally made it back home at 5:30am. After feeding, changing and giving him meds, I took J into bed with me, while Brett stayed in the living room to watch TV. We didn't wake until 1:00pm Monday afternoon.
Right now J is feeling much better. Brett and I have no idea where this fever came from, but it left just as quickly as it came and scared the hell out of us in the process. Needless to say, J will be sleeping with me for the next few nights!
February 11, 2005 - Morning Jacob has been feeling much better this week. He has not had a fever since the episode last weekend! To be on the safe side, I called his Neurologist and scheduled an appointment.
Surprisingly, they were able to get him in this afternoon. I want to be sure that the febrile seizure is not at all related to the seizures he had while in the NICU.
Yesterdays home therapy visit was a great one. Not only did J work with his VI therapist, whom he adores, but he also visited with a nutritionist. I gave her a brief history and told her what J's eating habits were like. I told her I gave him formula for his first and last feedings of each day, with whole milk and food in between. She told me that his formula only contains two calories more per ounce than whole milk, so we could stop formula and go to whole milk full time! Yay for Mom and Dad's pocketbook! Oh, I was so happy to hear that!
Next week, on February 17th one of my best friends, Denise, who I have known for many years, will be flying into Wichita from Minneapolis for a visit. This will be her first time meeting J! She is very excited!
February 11, 2005 - Evening J's Neurology appointment went well today, although I did not get the news I expected. Jacob saw Dr. S's PA who isn't convinced that J had a febrile seizure. Given the fact that he wasn't ill before or after the incident, it indicates other possible problems. She wants J to have an EEG, to see how things look. The office is booked for the next six weeks (because she will be taking maternity leave, and all her patients are trying to get in) but J has been put on the cancellation list as a priority. Hopefully he will be able to get in within a week or two.
In the meantime, the PA gave me a prescription for medication to be administered should J have another seizure. The medication takes 3 to 5 minutes to stop the seizure. Once he has the EEG, she will be able to determine whether he needs to be put back on daily seizure medication. Of course, we pray everything turns out fine and he doesn't need medication.
February 23, 2005 It has been a hectic but fun week. On Thursday the 17th, one of my greatest friends, Denise, flew in from Minnesota. Denise and I became friends over 10 years ago while living in California. After attending undergrad at Cornell University, she moved to Minnesota for law school. This was her third trip to Kansas, but her first time seeing Jacob. She had a great time, other than some flight delays for her trip back to MN (she ended up staying an extra night due to a cancelled flight, which meant more time with Jacob!).
On Monday morning, Brett and I took J and drove to Topeka Kansas. Once in town we stopped for lunch, then went over to the Capital Building. We met with Debbie, a representative with Rainbows united, who introduced us to a few people, including other parents. At 3:30pm, we entered a large room where the committee was seated. One at a time, individuals were called to the podium to speak. Parents as well as professionals spoke. When I was called, I approached the podium and introduced myself. I then began reading from the paper I wrote Sunday night. Brett stood next to me holding Jacob. While talking, I looked up to make eye contact with the committee and lost my place when I looked down again. I was quiet embarrassed. Brett whispered "take your time," which made me feel better. When I was done, Brett was called. I returned to my seat with J. Brett told me later that he wasn't nervous until he stood at the podium. He said his legs shook, although I couldn't tell. Others went after us, but we did not stay for the remainder of the meeting.
Brett and I feel honored to have taken part in something so important for the future of Tiny K services in Kansas. We feel that speaking about the wonderful things Rainbows has done for Jacob is the least we can do to show our gratitude. I would jump at the chance to do this again, whether before state officials or otherwise.
If you have any questions, or would like to read what Brett and I read aloud to the Budget Committee, please contact Trish.
February 23, 2005 This morning Jacob went to the Neurologist for an EEG. He was scheduled for a few weeks from now, but a cancellation allowed him to get in sooner. He was sedated for the test, which went well. Afterwards, I took him home for lunch, then returned two hours later for the follow-up and results. I am very happy to report that the EEG was normal, showing no seizure activity. Dr. S said to call if he has another episode, otherwise he doesn't need to see him again until the end of the year! Yay!!
In family news, this morning Brett and I will take J to Winfield, Kansas (about an hour away) to visit a 1-year-old Rat Terrier named Skipper. If all goes well, we will welcome Skipper to our home as our first family pet!
February 28, 2005 We have added a new member to our family! Skipper is a year and a half year old Rat Terrier we adopted through the Cowley County Humane Society. He is fully trained and loves to shake, give you high-fives and cuddle. He loves to sit on your lap and sleep in bed with you, sometimes under the covers! Brett and I know he is a perfect fit for us. He has been really good around Jacob, too, which is very important. Today when Brett went to get some take-out, Skipper went with him! He's a very loveable and friendly dog!
The coming week will be very slow for J with only one appointment on Friday (3/4/05), with his Pediatrician. We will definitely take advantage of the break, because out of the nine appointments J has in March, four of them will be during the week of March 6th. Three therapy visits and one with his Urologist. Busy, busy! It's all very worth it though!
Saturday, January 1, 2005
January 2005
January 1, 2005 Happy New Year!! We hope you all had a happy and safe New Year's Eve. We look forward to what the new year will bring for J and all of our beloved Family, friends and Jacob Fans! J hasn't had any appointments since the last update, but he has several during the month. The most important is on the 11th. J will be going to Wesley Medical Center for an eye exam under anesthesia. Dr. V. will perform the exam and will determine whether J's left eye needs surgery. If so, he will likely perform the surgery the same day. J also has therapy and ophthalmologist appointments. As always, detailed updates will be given for each!
January 4, 2005 As you read on the home page, the Smith family has lost a very dear member. Bernita "Bunny" Smith, Jacob's great grandmother, passed away yesterday January 3rd. She was 90 years old. Thankfully, Jacob was able to visit his great grandmother on a number of occasions. And although he is too young to remember those visits, the rest of the family will share with him the memories and photos as he gets older.
January 6, 2005 One year ago today, Jacob came home from the hospital. He spent 4 months and 2 days at Wesley Medical Center in the NICU. As I sit at the computer and type, the Fighter is playing in his walker on the kitchen floor. This year has been amazing. I am so proud of my boy!
Many of you have probably heard about the horrible ice storm that hit the Midwest. Wichita and most of Kansas was hit hard. The storm knocked out power to some 45,000 Wichitan's, thankfully we were not one of them. We did lose power for a short time on the 5th and for a few hours today, but not long enough to get too chilly. Today we had a tree service out to remove two large tree limbs that feel on our house. One fell between our neighbor and ours and sat on the neighbor’s power line, luckily it did not break loose. The other, fell against the porch and on top of the house. The damage is minor but the tree trimming was expensive!
Tomorrow morning (the 7th), we will leave for Kansas City to attend the visitation and funeral of Brett's Grandmother Bernita. As you saw on the home page, she just loved her Jacob! She would carry pictures of him with her all the time and show them off to her fellow nursing home residents. He was a celebrity there!
January 14, 2005 - Morning J didn't make it to his exam under anesthesia this week. Due to a continued cough and runny nose, I had to reschedule it. So, no news in that department! Later today, his Physical Therapist will visit with him. Because of the bad weather, holidays and illness all around, he hasn't seen any of his therapists for a few weeks. I will happily report today's visit when it's over.
Also today, J's Grandma Smith will be paying us a visit. She will be in town from Dodge City for an appointment, and will spend the night and spend time with us. We always look forward to her visits (and Grandpa Smith too, but he won't be coming this time) and of course she enjoys the time she gets to play with her grandson.
January 14, 2005 - Evening I guess I spoke too soon. J's therapist called to cancel her appointment today. No worries though, he will meet with her (and others) again soon!
January 4, 2005 As you read on the home page, the Smith family has lost a very dear member. Bernita "Bunny" Smith, Jacob's great grandmother, passed away yesterday January 3rd. She was 90 years old. Thankfully, Jacob was able to visit his great grandmother on a number of occasions. And although he is too young to remember those visits, the rest of the family will share with him the memories and photos as he gets older.
January 6, 2005 One year ago today, Jacob came home from the hospital. He spent 4 months and 2 days at Wesley Medical Center in the NICU. As I sit at the computer and type, the Fighter is playing in his walker on the kitchen floor. This year has been amazing. I am so proud of my boy!
Many of you have probably heard about the horrible ice storm that hit the Midwest. Wichita and most of Kansas was hit hard. The storm knocked out power to some 45,000 Wichitan's, thankfully we were not one of them. We did lose power for a short time on the 5th and for a few hours today, but not long enough to get too chilly. Today we had a tree service out to remove two large tree limbs that feel on our house. One fell between our neighbor and ours and sat on the neighbor’s power line, luckily it did not break loose. The other, fell against the porch and on top of the house. The damage is minor but the tree trimming was expensive!
Tomorrow morning (the 7th), we will leave for Kansas City to attend the visitation and funeral of Brett's Grandmother Bernita. As you saw on the home page, she just loved her Jacob! She would carry pictures of him with her all the time and show them off to her fellow nursing home residents. He was a celebrity there!
January 14, 2005 - Morning J didn't make it to his exam under anesthesia this week. Due to a continued cough and runny nose, I had to reschedule it. So, no news in that department! Later today, his Physical Therapist will visit with him. Because of the bad weather, holidays and illness all around, he hasn't seen any of his therapists for a few weeks. I will happily report today's visit when it's over.
Also today, J's Grandma Smith will be paying us a visit. She will be in town from Dodge City for an appointment, and will spend the night and spend time with us. We always look forward to her visits (and Grandpa Smith too, but he won't be coming this time) and of course she enjoys the time she gets to play with her grandson.
January 14, 2005 - Evening I guess I spoke too soon. J's therapist called to cancel her appointment today. No worries though, he will meet with her (and others) again soon!
January 21, 2005 It's been a busy week here in Fighter Land. Not only did J have two therapy appointments, but I started back to school! Scary!
J's therapy appointments went well. The first was on Tuesday with his physical therapist. She worked with J on standing and crawling. She encouraged Brett and I to really get to work with him since he's a little behind were she would like him to be.
On Thursday, J worked with his VI (visual impairment) therapist. She told us that for many visually impaired children, wearing no pants and socks often helps when learning to crawl/walk. It gives the child a chance to feel textures with his skin, in this case, carpet and wood floors. She would like us to wean Jacob from the bottle to either a sippy cup or regular plastic cup. As many parents out there know, this will be a hard task. We will work with him gradually and hopefully wean him soon. Getting him to use a sippy cup will be a great step for him and for our pocketbook- the special nipple he uses, called a Haberman, isn't cheap and has to be special ordered from the internet!
Jacob's eye exam under anesthesia will be on the morning of Jan. 25th. Please keep him in your thoughts and prayers. Brett and I have grown rather discouraged of J's vision. We hardly see him react to light, let alone an object in front of his face. No matter the outcome though, we will get through.
January 24, 2005 J will be going in early tomorrow (Tuesday) morning for his eye exam. In the past, the exam has led to surgery-- Dr. V. goes in to perform the exam, then comes out to talk to us about what he saw and if he thinks surgery should be performed at that time, all being done while J is under anesthesia. As always, I will have a full report on the website as soon as I can.
Thank you for your thoughts and prayers. They mean so much to us.
January 25, 2005 Jacob did very well during his exam this morning. He didn't have surgery. He was cranky before and after because he was hungry, but other than that, there were no problems. The results of the exam were as Brett and I expected- not good. We told Dr. V that as of late he hasn't been reacting to anything, not even light (he used to react to lights/ bright colors). He said that that goes along with what he saw during the exam- fluid pooling in both eyes. He asked Brett and me if J's Pediatrician was pleased with his weight gain and growth. I guess nutrition can have an effect on the fluids of the body. I told him I would call the Pediatrician to get her opinion, but I didn't think it was a problem since she was happy with his progress at his last visit.
Dr V said he would talk with J's Pediatric Ophthalmologist, Dr. J, about what to do next and then give us a call. We lost J's contact lens this weekend, so he is going to discuss with him about a new lens and if we should try one in the left eye. Even though we know J's vision is poor, wearing contacts/glasses would be beneficial in stimulating brain activity, which is very important for a growing infant.
We haven't lost all hope for J to have vision, who knows what will happen in the next few years, but we have grown rather discouraged. Thanks for thinking of J and us.
J's therapy appointments went well. The first was on Tuesday with his physical therapist. She worked with J on standing and crawling. She encouraged Brett and I to really get to work with him since he's a little behind were she would like him to be.
On Thursday, J worked with his VI (visual impairment) therapist. She told us that for many visually impaired children, wearing no pants and socks often helps when learning to crawl/walk. It gives the child a chance to feel textures with his skin, in this case, carpet and wood floors. She would like us to wean Jacob from the bottle to either a sippy cup or regular plastic cup. As many parents out there know, this will be a hard task. We will work with him gradually and hopefully wean him soon. Getting him to use a sippy cup will be a great step for him and for our pocketbook- the special nipple he uses, called a Haberman, isn't cheap and has to be special ordered from the internet!
Jacob's eye exam under anesthesia will be on the morning of Jan. 25th. Please keep him in your thoughts and prayers. Brett and I have grown rather discouraged of J's vision. We hardly see him react to light, let alone an object in front of his face. No matter the outcome though, we will get through.
January 24, 2005 J will be going in early tomorrow (Tuesday) morning for his eye exam. In the past, the exam has led to surgery-- Dr. V. goes in to perform the exam, then comes out to talk to us about what he saw and if he thinks surgery should be performed at that time, all being done while J is under anesthesia. As always, I will have a full report on the website as soon as I can.
Thank you for your thoughts and prayers. They mean so much to us.
January 25, 2005 Jacob did very well during his exam this morning. He didn't have surgery. He was cranky before and after because he was hungry, but other than that, there were no problems. The results of the exam were as Brett and I expected- not good. We told Dr. V that as of late he hasn't been reacting to anything, not even light (he used to react to lights/ bright colors). He said that that goes along with what he saw during the exam- fluid pooling in both eyes. He asked Brett and me if J's Pediatrician was pleased with his weight gain and growth. I guess nutrition can have an effect on the fluids of the body. I told him I would call the Pediatrician to get her opinion, but I didn't think it was a problem since she was happy with his progress at his last visit.
Dr V said he would talk with J's Pediatric Ophthalmologist, Dr. J, about what to do next and then give us a call. We lost J's contact lens this weekend, so he is going to discuss with him about a new lens and if we should try one in the left eye. Even though we know J's vision is poor, wearing contacts/glasses would be beneficial in stimulating brain activity, which is very important for a growing infant.
We haven't lost all hope for J to have vision, who knows what will happen in the next few years, but we have grown rather discouraged. Thanks for thinking of J and us.
Tuesday, December 28, 2004
December 28, 2004
I sure hope everyone's Christmas was as wonderful as ours was! We had a great time in Texas! Jacob had so much fun meeting and playing with his Great Grandparents. And of course, they had a great time with him too! We enjoyed relaxing and just spending quality time together. On Christmas Eve, we opened a few gifts with friends, and then participated in the Lords Supper at Grandma and Grandpa's Church. On Christmas, we all spent most of the day in our pj's and watched movies. Brett and I were able to take a nap, thanks to Aunts Meg and Pam for watching J. Overall, it was a very quiet trip. We had many nice talks as a family, which I really enjoy.
I would have to say the only bad part about our trip was that Jacob, Meagan and I were all sick. Our head colds that started a week before we left, lingered into our visit. We didn't fret though, since Grandpa is a PA-C, he had all sorts of goodies to help us feel better fast! Antibiotics for my ear infection and cough medicine and decongestants for Meagan and J. Grandpa is the best!
I would have to say the only bad part about our trip was that Jacob, Meagan and I were all sick. Our head colds that started a week before we left, lingered into our visit. We didn't fret though, since Grandpa is a PA-C, he had all sorts of goodies to help us feel better fast! Antibiotics for my ear infection and cough medicine and decongestants for Meagan and J. Grandpa is the best!
Wednesday, December 22, 2004
December 22, 2004
I am very happy to report that Jacob (and the rest of the family) is feeling much better. I was beginning to worry that he would not be well in time for us to leave for Texas. Thankfully, he is and we will be leaving as planned! We are very much looking forward to spending the holiday with my grandparents. They came up last Christmas, but J was in the NICU and due to visitation restrictions, weren't able to see him. Needless to say, they are very excited!
When we return from our holiday, we will have many pictures to share. We may even have J's picture taken with Santa!
Merry Christmas! God bless!
When we return from our holiday, we will have many pictures to share. We may even have J's picture taken with Santa!
Merry Christmas! God bless!
Friday, December 17, 2004
December 17, 2004
Poor little J isn't feeling too well today. What Brett and I thought was a reaction to his flu shot, actually turned into a viral infection. When J received his first flu shot a month ago, he had the sniffles a few days later. This time it was a bit more than that. His breathing became rapid and his cough horse, so at 3am this morning I took him to the ER to be checked out. While there, J received a breathing treatment and chest x-ray. The breathing treatment opened up his lungs, and the x-ray was clear. After about two hours, I was told I could take him home, but to keep a close eye on his breathing. If anything got worse, to bring him back in. We made it home a little before 6am and by then he was resting comfortably. At 9am though, Brett woke me because J's fever had gone up. We used a cold cloth on his neck, which he didn't like at all, and that helped bring it down. As I write this at almost 3pm, he is sleeping in his room.
We figured out J most likely got his cold from my sister Meagan, who also had a fever and cough this week. I also started feeling achy last night and have a stuffy nose today! Tis' the season! We hope everyone is well by Wednesday, the day we plan to leave for Texas.
I will have more updates on the sick ones soon. I hope you are all feeling healthy! =)
We figured out J most likely got his cold from my sister Meagan, who also had a fever and cough this week. I also started feeling achy last night and have a stuffy nose today! Tis' the season! We hope everyone is well by Wednesday, the day we plan to leave for Texas.
I will have more updates on the sick ones soon. I hope you are all feeling healthy! =)
Monday, December 13, 2004
December 13, 2004
In family news... After a lot of thought, Brett and I have decided it would be to our benefit if I quit my part time job and focused on home life and school. With Brett working nights, me during the day and going to school, the rough schedule has been taking its toll for some time. Irregular sleep patterns, never seeing each other, etc. We hope that me being at home will bring a nice balance to our daily lives. And since I will be at home, I have decided to increase my school load next semester. Wish me luck!
Now, in J news... Other than having the sniffles from his flu shot on Friday, J is doing great. We took his contact out for a couple days last week because his eye was looking a little red and irritated. I think the break did him good because since putting the contact back in, his eye has looked fine. Also, last week, J went to see Dr. V., who said his left eye has continued to improve. Dr. V. will perform an exam under anesthesia in January to get a better look and decided whether surgery will be needed. Later, we will take J back to Dr. J., the ophthalmologist, to see about a contact lens for his left eye. Isn't it amazing that J is now 15 months old, 11 months adjusted? He has come so far in that time! Wow.
Now, in J news... Other than having the sniffles from his flu shot on Friday, J is doing great. We took his contact out for a couple days last week because his eye was looking a little red and irritated. I think the break did him good because since putting the contact back in, his eye has looked fine. Also, last week, J went to see Dr. V., who said his left eye has continued to improve. Dr. V. will perform an exam under anesthesia in January to get a better look and decided whether surgery will be needed. Later, we will take J back to Dr. J., the ophthalmologist, to see about a contact lens for his left eye. Isn't it amazing that J is now 15 months old, 11 months adjusted? He has come so far in that time! Wow.
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