Friday, February 11, 2011
Saturday, December 5, 2009
Fall Photos
Jacob and I drove to Lindsborg, KS in October to see my dear friend Jolene to have fall photos taken. She did an amazing job! Thanks, Jolene!
Sunday, February 11, 2007
February 2007
February 11, 2007 Our poor fighter is....fighting yet another cold. He's coughing, sneezing and has had a fever for two days. The little guy was coughing so hard he vomited. I just feel so bad when he gets like this. He's getting sick every couple weeks- way too much. I am going to call his doctor and see what she thinks about things. He's had a few ear infections recently so it may be time to see and ENT for tubes. Maybe that would help. I'm sure part of it is the time of year. And of course we are happy that he has avoided the hospital but as you can imagine, it is still frustrating.
On a happier note, Jacob is making a new sound...."Lah Lah Lah." Just two days ago he was playing on the floor and starting making L sounds- we couldn't believe it. He was already making lots of sounds, but no L's. We talk to him all the time and can't wait for the "Lah" to turn into "love" or any other word for that matter! We just want to hear a word! We can't wait for humming songs to turn into singing songs. I know he's close!
Monday, January 22, 2007
January 2007
January 22, 2007 It's been a long time, I know! Unfortunate computer issues left me with the task of rebuilding this web site and Wichita Preemies, from scratch! Ouch! With as busy as things have been, I have had little time to sit at the computer. Getting the site complete will take some time, but having it up again is a start!
Jacob has been doing pretty well lately, with only a few illnesses- nothing like the pneumonia he had last year which put him in the hospital for several days. He continues to attend preschool at Rainbows United and has been progressing slowly, but progress is progress. He is not talking yet, but makes many sounds and even hums songs. His walking hasn't progressed much at all. He will walk using something for stability, but does not take steps on his own (though he has in the past). And the other major issue we are working on is feeding. Jacob continues to have trouble with large pieces of food, so we have to puree or mash his food, otherwise he will gag. i know these are only minor setbacks and keeping that in mind helps Brett and I when we wonder what we are doing wrong. We aren't doing anything wrong, each child is different, especially with his needs.
I will close for now. Thank you for your continued support of Jacob and his web site!
Jacob has been doing pretty well lately, with only a few illnesses- nothing like the pneumonia he had last year which put him in the hospital for several days. He continues to attend preschool at Rainbows United and has been progressing slowly, but progress is progress. He is not talking yet, but makes many sounds and even hums songs. His walking hasn't progressed much at all. He will walk using something for stability, but does not take steps on his own (though he has in the past). And the other major issue we are working on is feeding. Jacob continues to have trouble with large pieces of food, so we have to puree or mash his food, otherwise he will gag. i know these are only minor setbacks and keeping that in mind helps Brett and I when we wonder what we are doing wrong. We aren't doing anything wrong, each child is different, especially with his needs.
I will close for now. Thank you for your continued support of Jacob and his web site!
Wednesday, November 1, 2006
November 2006
November 7, 2006 Just over two weeks until Thanksgiving...hard to believe, but boy do we have lots to be thankful for!
Jacob has been doing really well in his new preschool classroom. He is with the "big kids" who are the same age, but slightly bigger in size. Another great thing about being in this class is that Jacob is back with his old Pals, a boy and a girl (sorry, can't mention names) who are both visually impaired. I think it's great for him to be around kids his own age who have the same disability. He did have visually impaired friends in his old room, but they were not as close in age. I'm excited to see how he progresses in his new environment.
Jacob's progress with walking is at a stand-still (ha-ha, get it? Stand-still?). He can do it, that's for sure, but he chooses not to. There was a time a few months ago when he'd take 5 or even 10 steps on his own. Now he only walks if you hold one or both of his hands. I guess it's a natural thing. He needs to be interested and motivated. Perhaps he's concentrating on other things like........humming! He does it all the time. Just the other night Aunt Pam (my sister) was playing with him and hummed the first verse of Twinkle Twinkle. When she stopped, he picked it up right where she left off. I was so excited and proud that I was tearing up. We know Jacob is smart. He understands many things like words, voices, songs, etc, he just isn't spitting them back out yet. I think I may pass out the day he says his first word.
We are still waiting to hear from Jacob's Case Manager at Rainbows to see if he was approved for school funding. If approved, Jacob would receive educational toys, Braille books, special dinnerware and utensils, diapers, wipes, and his fee's to attend full day classes. What a blessing it would be! Any one of those items would be wonderful for Jacob and helpful to dad and I. We're keeping our fingers crossed and our prayers-a-flowing!
November is National Prematurity Month. Please check out www.marchofdimes.com for information on ways you can help!
November 15, 2006 We're letting him grow.....his hair that is. Brett and I decided to let Jacob's hair grow out and see what happens. It's been all over the place lately, but we want to see what it will do when it's even longer. Will it be thick and wavy? Perhaps thin and straight? Who knows!
For the first time...EVER....Brett, Jacob and I are going to get a family portrait! Wow! Our digital camera has been glued to our hands since Jacob's birth so we have never considered getting professional pictures taken. We found that the Wal-Mart portrait studio has very reasonable prices so we plan to schedule a shoot in the next week or two- just in time for the holidays!
Jacob has been taking steps on his own this week. He's done it before (he started months ago) but until this week has been stubborn. If we can just get him to take a few steps on his own each day, he'll be walking all the time...in no time at all. Once he reaches that milestone, we'll begin work on the next- walking with a cane.
Last week Jacob and I attended a VI (Visually Impaired) Group at Rainbows United. It was a wonderful experience. There were several parents there including two with older children who are blind. One who is 10 and the other, 14. I explained Jacob's current developmental stage, like how he still eats mashed foods, doesn't talk, isn't walking on his own, biting his hands, etc. and how Brett and I are growing discouraged over his delays. The other mom's eased our worries by telling us that their boys did the same thing when they were Jacob's age. Sometimes Brett and I wonder if Jacob will ever eat regular food- that is with his hands or a utensil and large pieces. We also wonder when his humming will turn into words. "All in time." the mother's explained. It sounds like he's on the right track. We've always had faith in Jacob, but hearing from other parents who have been there helps so much!
I remember visiting a friend over the summer who's son was just under a year old at the time. While we sat in her dining room talking, she put her son in his high chair, cut up a piece of fruit and set it in front of him. The little guy grabbed each bite with his fingers and munched away. "He's not even a year old," I thought to myself. "Jacob is three and we still have to mash his food and spoon feed him. Amazing." Growing up in the world is a whole different ball game when you can't see it.
Jacob has been doing really well in his new preschool classroom. He is with the "big kids" who are the same age, but slightly bigger in size. Another great thing about being in this class is that Jacob is back with his old Pals, a boy and a girl (sorry, can't mention names) who are both visually impaired. I think it's great for him to be around kids his own age who have the same disability. He did have visually impaired friends in his old room, but they were not as close in age. I'm excited to see how he progresses in his new environment.
Jacob's progress with walking is at a stand-still (ha-ha, get it? Stand-still?). He can do it, that's for sure, but he chooses not to. There was a time a few months ago when he'd take 5 or even 10 steps on his own. Now he only walks if you hold one or both of his hands. I guess it's a natural thing. He needs to be interested and motivated. Perhaps he's concentrating on other things like........humming! He does it all the time. Just the other night Aunt Pam (my sister) was playing with him and hummed the first verse of Twinkle Twinkle. When she stopped, he picked it up right where she left off. I was so excited and proud that I was tearing up. We know Jacob is smart. He understands many things like words, voices, songs, etc, he just isn't spitting them back out yet. I think I may pass out the day he says his first word.
We are still waiting to hear from Jacob's Case Manager at Rainbows to see if he was approved for school funding. If approved, Jacob would receive educational toys, Braille books, special dinnerware and utensils, diapers, wipes, and his fee's to attend full day classes. What a blessing it would be! Any one of those items would be wonderful for Jacob and helpful to dad and I. We're keeping our fingers crossed and our prayers-a-flowing!
November is National Prematurity Month. Please check out www.marchofdimes.com for information on ways you can help!
November 15, 2006 We're letting him grow.....his hair that is. Brett and I decided to let Jacob's hair grow out and see what happens. It's been all over the place lately, but we want to see what it will do when it's even longer. Will it be thick and wavy? Perhaps thin and straight? Who knows!
For the first time...EVER....Brett, Jacob and I are going to get a family portrait! Wow! Our digital camera has been glued to our hands since Jacob's birth so we have never considered getting professional pictures taken. We found that the Wal-Mart portrait studio has very reasonable prices so we plan to schedule a shoot in the next week or two- just in time for the holidays!
Jacob has been taking steps on his own this week. He's done it before (he started months ago) but until this week has been stubborn. If we can just get him to take a few steps on his own each day, he'll be walking all the time...in no time at all. Once he reaches that milestone, we'll begin work on the next- walking with a cane.
Last week Jacob and I attended a VI (Visually Impaired) Group at Rainbows United. It was a wonderful experience. There were several parents there including two with older children who are blind. One who is 10 and the other, 14. I explained Jacob's current developmental stage, like how he still eats mashed foods, doesn't talk, isn't walking on his own, biting his hands, etc. and how Brett and I are growing discouraged over his delays. The other mom's eased our worries by telling us that their boys did the same thing when they were Jacob's age. Sometimes Brett and I wonder if Jacob will ever eat regular food- that is with his hands or a utensil and large pieces. We also wonder when his humming will turn into words. "All in time." the mother's explained. It sounds like he's on the right track. We've always had faith in Jacob, but hearing from other parents who have been there helps so much!
I remember visiting a friend over the summer who's son was just under a year old at the time. While we sat in her dining room talking, she put her son in his high chair, cut up a piece of fruit and set it in front of him. The little guy grabbed each bite with his fingers and munched away. "He's not even a year old," I thought to myself. "Jacob is three and we still have to mash his food and spoon feed him. Amazing." Growing up in the world is a whole different ball game when you can't see it.
Sunday, October 1, 2006
October 2006
October 10, 2006 Ok, I'm going to sound like a broken record but....man, it's been so busy around here! :)
Let's see, Jacob has been doing very well. *knocks on wood* He's been going to school everyday *knocks on wood again* and other than a runny nose, has been healthy. Hmmm, I wonder if I've knocked on enough wood....Ok, back to Jacob. He went on a field trip yesterday to the local pumpkin patch. Unfortunately I wasn't able to go with him, but I was told he had a lot of fun. As you saw on the homepage, Jacob is quite the artist. He comes home with something new almost everyday. Our fridge is covered!
Jacob has been working very hard on walking independently. Yesterday he took several steps on his own using his arms to check out his surroundings. Sometimes I have to hold back the cheers because it startles him and he falls down. What can I say, I get excited when he does cool stuff like that! When we assist him, we hold just one of his hands so he learns to balance.
Jacob is doing really well with verbal cues and commands. He definitely knows what "no!" means. When mommy has her laptop on the coffee table and he stands up and puts his hands on it, he hears "no" and quickly pulls his hand away. When he gets upset and bites his hand in frustration, he'll hear "no biting" or "hands down please." He doesn't always stop, but he's getting better. When he's crawling around the house and we see that he's getting close to a wall or table, we say to him: "there's a wall Jacob" or "table" and he will slow down or turn and go another direction. We try to give him lots of encouragement with "thank you" "please" "good job" and he seems to respond to that. Now if we could just get him to talk back!
In Family News....after over four months, our stolen car was located and returned to us in good condition. In fact, it was being used in a major car theft ring in the Wichita area. Our little car, a 98' Chevy Cavalier, was towing other stolen vehicles into a auto salvage lot. The thief's were using fake bills of sale to get cash for the stolen cars. Right now the car is awaiting a new license plate, a professional cleaning and of course a good tune-up/check to be sure there's no major damage under the hood. The thief's put a great deal of miles on it too. We are so grateful to God that we have our car back. It was very hard to make one vehicle work (hence the reason we bought a second car in the first place). And another great blessing: Brett's parents, who gave us a loan to purchase the car, told us we would not have to continue our monthly payments to them. Praise God for their generosity.
In Mommy News...I am plugging away at school. It's almost the half-way point in the semester and I'm doing good so far. I attend General Psychology on Wednesday evenings and Intermediate Algebra on Friday afternoons. I have been working plenty of hours in the NICU (about 15 a week) and just yesterday I started working at Rainbows United as a Respite Care Provider. I will work center-based at Jacobs school, but may do in-home care as well. How will I handle being Jacob's mommy (and the doggies too), Brett's wife, work two jobs and go to school? Very carefully!
In related news... The preemie group I started with fellow preemie mom Lainie, Wichita Preemie's, is off to a slow start. We aren't giving up though! We have a great new flyer and will soon launch a website. I will update the journal as soon as the website launches. For more information, please email me at onestrongmother@yahoo.com.
October 22, 2006 It seems when the cool weather came in, it brought with it sinus infections and other cold-like symptoms. Just two weeks ago Brett, Jacob and I were sick and now we're feeling "under the weather" yet again. Jacob has a never ending runny nose and Brett and I both have sore throats and sinus pressure. Lots of water, rest and some good medicine seem to be doing the trick.
I'm sorry to say I don't have any new pictures to share- my sister, "Aunt Pam" borrowed my camera for her trip to Iowa last week. I plan to get camera crazy just as soon as we're all feeling better.
Jacob is graduating! Starting tomorrow, Jacob will be in a preschool class instead of an infant/toddler class (as he has been for the last two years). We wanted to have him in a preschool class at the beginning of the school year, but there wasn't an opening. Needless to say a spot has opened up and we are so excited for him! With his new class comes a new bus pick up time- 8:45am, a whole hour and 40 minutes later than before...a great thing for mommy who is not a morning person. :)
In other news...the preemie support group web site is up and running! Check out http://www.wichitapreemies.com/! The group is going to be mentioned in the local newspaper, The Wichita Eagle, and a link to the site will be put on the web site of Wesley Medical Center. Lainie and I hope this will help our group grow!
Let's see, Jacob has been doing very well. *knocks on wood* He's been going to school everyday *knocks on wood again* and other than a runny nose, has been healthy. Hmmm, I wonder if I've knocked on enough wood....Ok, back to Jacob. He went on a field trip yesterday to the local pumpkin patch. Unfortunately I wasn't able to go with him, but I was told he had a lot of fun. As you saw on the homepage, Jacob is quite the artist. He comes home with something new almost everyday. Our fridge is covered!
Jacob has been working very hard on walking independently. Yesterday he took several steps on his own using his arms to check out his surroundings. Sometimes I have to hold back the cheers because it startles him and he falls down. What can I say, I get excited when he does cool stuff like that! When we assist him, we hold just one of his hands so he learns to balance.
Jacob is doing really well with verbal cues and commands. He definitely knows what "no!" means. When mommy has her laptop on the coffee table and he stands up and puts his hands on it, he hears "no" and quickly pulls his hand away. When he gets upset and bites his hand in frustration, he'll hear "no biting" or "hands down please." He doesn't always stop, but he's getting better. When he's crawling around the house and we see that he's getting close to a wall or table, we say to him: "there's a wall Jacob" or "table" and he will slow down or turn and go another direction. We try to give him lots of encouragement with "thank you" "please" "good job" and he seems to respond to that. Now if we could just get him to talk back!
In Family News....after over four months, our stolen car was located and returned to us in good condition. In fact, it was being used in a major car theft ring in the Wichita area. Our little car, a 98' Chevy Cavalier, was towing other stolen vehicles into a auto salvage lot. The thief's were using fake bills of sale to get cash for the stolen cars. Right now the car is awaiting a new license plate, a professional cleaning and of course a good tune-up/check to be sure there's no major damage under the hood. The thief's put a great deal of miles on it too. We are so grateful to God that we have our car back. It was very hard to make one vehicle work (hence the reason we bought a second car in the first place). And another great blessing: Brett's parents, who gave us a loan to purchase the car, told us we would not have to continue our monthly payments to them. Praise God for their generosity.
In Mommy News...I am plugging away at school. It's almost the half-way point in the semester and I'm doing good so far. I attend General Psychology on Wednesday evenings and Intermediate Algebra on Friday afternoons. I have been working plenty of hours in the NICU (about 15 a week) and just yesterday I started working at Rainbows United as a Respite Care Provider. I will work center-based at Jacobs school, but may do in-home care as well. How will I handle being Jacob's mommy (and the doggies too), Brett's wife, work two jobs and go to school? Very carefully!
In related news... The preemie group I started with fellow preemie mom Lainie, Wichita Preemie's, is off to a slow start. We aren't giving up though! We have a great new flyer and will soon launch a website. I will update the journal as soon as the website launches. For more information, please email me at onestrongmother@yahoo.com.
October 22, 2006 It seems when the cool weather came in, it brought with it sinus infections and other cold-like symptoms. Just two weeks ago Brett, Jacob and I were sick and now we're feeling "under the weather" yet again. Jacob has a never ending runny nose and Brett and I both have sore throats and sinus pressure. Lots of water, rest and some good medicine seem to be doing the trick.
I'm sorry to say I don't have any new pictures to share- my sister, "Aunt Pam" borrowed my camera for her trip to Iowa last week. I plan to get camera crazy just as soon as we're all feeling better.
Jacob is graduating! Starting tomorrow, Jacob will be in a preschool class instead of an infant/toddler class (as he has been for the last two years). We wanted to have him in a preschool class at the beginning of the school year, but there wasn't an opening. Needless to say a spot has opened up and we are so excited for him! With his new class comes a new bus pick up time- 8:45am, a whole hour and 40 minutes later than before...a great thing for mommy who is not a morning person. :)
In other news...the preemie support group web site is up and running! Check out http://www.wichitapreemies.com/! The group is going to be mentioned in the local newspaper, The Wichita Eagle, and a link to the site will be put on the web site of Wesley Medical Center. Lainie and I hope this will help our group grow!
Friday, September 1, 2006
September 2006
September 3, 2006 Wow, tomorrow Jacob will be three years old! Three! Three years ago he came into the world so tiny, so sick and now......he's beautiful, he's strong, he's still a Fighter!
Our trip to Kansas City went well. We left Wichita last Sunday and returned Wednesday afternoon (Thanks for house/dog-sitting Pam!). Originally, we planned to be home Tuesday, but our trip was extended due to a technical difficulty. See, Jacob was scheduled for an EEG Monday morning at 7:30am, but the hotel alarm, as well as the alarm on my cell phone failed to wake us. It probably didn't help that Brett and I were up very late with Jacob. To our surprise, they were able to reschedule the test for Wednesday- hence the extended stay. After rescheduling, we slept a little bit more before heading over to the hospital (Children's Mercy) for two other appointments. The first was for a "history and physical." We answered lots of questions, the doc took-a-listen to J and we were on our way. The next appointment, in another part of the hospital, was for pre-anesthesia testing. Again, we answered lots of questions and the doc took a look at J. After that, we went back to the hotel. We spend the rest of the afternoon and evening just hanging out, napping and spending quality time together. On Tuesday morning we arrived back at the hospital at 10am for Jacob's MRI. Things went very smoothly. Brett and I were able to stay with Jacob until they started the anesthesia....weird to see him moving and making noise then go limp...very weird. Thankfully a nurse warned us that would happen. The MRI took about an hour, then we watched as J came to. The nurses said he did very well. After a few minutes, we were allowed to leave....back to the hotel! For the EEG, we were to keep J up until midnight, then wake him at 4am so he would be nice and sleepy for the test. Well, Jacob decided he didn't want to go to sleep until after 2:00am so Brett stayed up with him while I slept. At 6:30am I woke and got Jacob ready to go. I took him for the EEG myself and let Brett get some sleep. J was very calm for the test, but didn't sleep. On our way out, the nice Tech gave J a fuzzy teddy bear! Too cute! We got back to the hotel by 9:30am. Since check-out time was three hours away, J and I took a nap with Dad before we started home. We will probably get the test results on Tuesday. And the coolest part? The call will likely come from the doctor himself and not a nurse! I love that!
What a day....Thirty minutes after getting home from KC, I had to get back in the car and head to class (a 20 minute drive)! When I returned home, I pulled into the driveway, threw my keys and cell phone in my bag and proceeded to get out of the car to throw something in the trash. I had to walk by the passenger side of the car to get to the trash, so I planned to throw away the trash and grab my bag out of the passenger seat. Well, out of habit, I hit the auto-lock button on the door and shut it behind me.....uhm....ooops! I locked everything in the car- my phone, my purse, my books, my keys.....the only set of keys we have since our other car was stolen a few months ago. What a day!
Birthday Boy.... Brett and I thought about having a party for Jacob's birthday, but because of busy schedules, finances and other things, we decided to have a small family gathering instead. Grandma Smith came to spend birthday time with him this weekend. She came to Wichita form Western Kansas Friday evening, spent the night, and stayed until mid-afternoon on Saturday. She really enjoyed her time playing, singing and talking with Jacob. For his birthday, Grandma Smith bought Jacob new shoes (which he really needed)! Four pairs, and they are all so cool! Thanks Grandma Smith!
While we were in KC, I took some pictures, but they didn't come out too good. Of course, I will post pictures of J regardless of quality because I am just so darn prod of my boy! Check out the latest on the Photos page!
As I said in the last update, feel free to email me (onestrongmother@yahoo.com) if you have any thoughts, questions or concerns about Jacob, I love hearing from Fighter Fans!
Have a happy and safe holiday weekend!
September 7, 2006 After an uneventful birthday (we are celebrating this weekend), Jacob woke early Tuesday morning having a seizure. One turned into two and before I knew it, his lips were gray. That's when I called 911. What threw me this time, was that the Diastat didn't stop the first seizure. I gave the second dose and the seizing stopped by the time EMS arrived. Because his color wasn't good and he needed oxygen, we went to the hospital. Ironically, one of the paramedics had helped in one of the past episodes. At the hospital, Jacob was on oxygen and IV fluids and had blood work done to check his electrolyte and medication levels. Everything looked good, so we came home. We gave J Advil for his fever, which always follows a seizure, then we all napped. Later that day, J was acting like nothing happened. What a trooper! I called the neurologist after our nap and explained the episode. The doctor tried calling that evening, but I was in the Preemie Support Group meeting and missed his call. We didn't hear from him yesterday either and couldn't call the office because their phone system is down. I sure hope we hear back today. I want to hear about the MRI and EEG results too.
On Wednesday, Jacob was feeling better so he went back to school. He had a great day! Here's hoping he stays healthy and on a routine!
September 12, 2006 Jacob's birthday celebration last weekend was a lot of fun. Joined by friends, family and neighbors, we feasted on tacos and later cake and ice cream. J didn't like digging into his cake very much, but did enjoy it when we sang happy birthday to him. He received some wonderful gifts (thanks everyone!) and had fun playing with everyone. Just hours before the party, he wasn't feeling well. He had vomited the night before and had some messy diapers so we thought for sure he'd be in bed for his party. He took a nap and woke shortly before guests arrived just as happy as could be, a very pleasant and happy surprise.
Friday evening, J's neurologist, Dr. T, finally got in touch with me to discuss his test results. After calling my phone and Brett's, he got me at work. I apologized to him for not being able to reach me. Our "home" phone is my cell and I had it off when I was at work. Brett didn't answer his phone because he was out in the yard. Good thing I had my work number listed on J's records. The test results (MRI and EEG) showed increased white matter of the occipital lobe of the brain as well as definite irritability/seizure activity in the same region. What does that mean? He has seizure activity happening in the vision part of the brain- ironic isn't it? Yesterday I took Jacob to see his retinal specialist and asked him if the seizures could be related and/or effecting his vision loss. He couldn't give me a definitive answer. He did say it is coincidental that J has been having seizures since shortly after birth, and has had ROP since then as well. I asked if getting the seizures under control would effect his vision in any way and he said it was hard to tell. I'm going to do some research on this and see if there are any similar cases out there. On another note, J's right eye, the better of the two, still looks good with its retina completely attached. The fluid that had built up in the eye has reabsorbed, also a good thing. J seemed to react to the bright light Dr. V shined in his eye, but then didn't react a second time. I told him he does that at home as well. Dr. V encouraged the use of glasses on J as much as possible. Up to this point we hadn't been putting J's glasses on, but I'm willing to do whatever I can to encourage use of whatever vision he may have. Because J is coming out of his shell developmentally, this is a great time to get back into wearing glasses regularly.
I kept J home from school yesterday because he didn't sleep at all the night before. For the last week, maybe more, he's been going to bed at a good time, then wakes at 2 or 3:00am. He'll stay up until 5:00am, sometimes later, before going back to sleep, then I have to wake him at 6:45am for school. Because he didn't fall back to sleep until almost 6:00am yesterday, I kept him home. Brett and I aren't sure why he's on this crazy schedule, but it won't last long- Mommy is exhausted and can't take it much longer!
In Mommy News... Last Friday I received a call from Rainbows United, where J goes to school, and was offered a job as a Respite Care Provider (I interviewed there about a month ago). The job is very flexible and will work with my school and hospital job schedules. I will have orientation on September 18th and begin working shortly thereafter. I'm looking forward to working for such a wonderful organization!
After over a year, I have finally update the extended Yahoo! album. I added 11 albums with over 200 pictures! Please check them out!
September 26, 2006 Oh boy, it's been busy around here! In the last couple weeks we've dealt with illness, a seizure, a rash and a bazzillion appointments. Ok, so just eight appointments (J and mom and dad), but that's still a lot.
The seizure J had this week was very mild, but stressful nonetheless, more for us than J. Brett and I handle situations like that the best way we know how, but it's always stressful because we worry for Jacob and just want the episode to pass. So far, he has pulled through well and bounces back within a few hours as if nothing happened. We are still working on getting the new med to a therapeutic level and hope to be off the Phenobarbital within a few weeks.
J has been sick off and on since his birthday. We kind of expected this when he started school. He's been stuffy, coughing, and last week, feverish. Brett and I have been giving him twice-daily breathing treatments- or more if he needs its- to keep his lungs clear. We've been able to care for his "crud" on our own, without taking him to the doctor which is a positive change from last year. We did, however, take him to the doctor this morning for another case of hives. The doc told us to give him Zyrtech until the rash is gone and he was fine to go to school. Yay for him...and us. Our "plan" when J went back to school was for me to work during the day while Brett slept, then we could spend time as a family in the evening. So far it hasn't worked out that way. J's illness and sleeping habits have been difficult and then I end up going back to sleep until mid-morning, sometimes till noon. I have faith though!
In mommy news... I have yet to start working for Rainbows. I had orientation on the 18th, but haven't been able to get to my doctor yet for a health assessment, which I have to have before I can begin working. I hope to start working early next week. In the meantime, I am getting plenty of hours at the NICU due to the high census (number of babies in the unit). Plenty meaning 15 to 20 hours per week instead of per pay period. It's been nice. Last Saturday, I had the day off and had several hours to myself, so I sat down and worked on my book proposal. It's been hard and I have let it sit for too long, but I hope that working on it a little each day will allow me to get it done soon. I really, really hope my idea hasn't already been submitted! I'll be sure to post an update when I put it in the mail.
Our trip to Kansas City went well. We left Wichita last Sunday and returned Wednesday afternoon (Thanks for house/dog-sitting Pam!). Originally, we planned to be home Tuesday, but our trip was extended due to a technical difficulty. See, Jacob was scheduled for an EEG Monday morning at 7:30am, but the hotel alarm, as well as the alarm on my cell phone failed to wake us. It probably didn't help that Brett and I were up very late with Jacob. To our surprise, they were able to reschedule the test for Wednesday- hence the extended stay. After rescheduling, we slept a little bit more before heading over to the hospital (Children's Mercy) for two other appointments. The first was for a "history and physical." We answered lots of questions, the doc took-a-listen to J and we were on our way. The next appointment, in another part of the hospital, was for pre-anesthesia testing. Again, we answered lots of questions and the doc took a look at J. After that, we went back to the hotel. We spend the rest of the afternoon and evening just hanging out, napping and spending quality time together. On Tuesday morning we arrived back at the hospital at 10am for Jacob's MRI. Things went very smoothly. Brett and I were able to stay with Jacob until they started the anesthesia....weird to see him moving and making noise then go limp...very weird. Thankfully a nurse warned us that would happen. The MRI took about an hour, then we watched as J came to. The nurses said he did very well. After a few minutes, we were allowed to leave....back to the hotel! For the EEG, we were to keep J up until midnight, then wake him at 4am so he would be nice and sleepy for the test. Well, Jacob decided he didn't want to go to sleep until after 2:00am so Brett stayed up with him while I slept. At 6:30am I woke and got Jacob ready to go. I took him for the EEG myself and let Brett get some sleep. J was very calm for the test, but didn't sleep. On our way out, the nice Tech gave J a fuzzy teddy bear! Too cute! We got back to the hotel by 9:30am. Since check-out time was three hours away, J and I took a nap with Dad before we started home. We will probably get the test results on Tuesday. And the coolest part? The call will likely come from the doctor himself and not a nurse! I love that!
What a day....Thirty minutes after getting home from KC, I had to get back in the car and head to class (a 20 minute drive)! When I returned home, I pulled into the driveway, threw my keys and cell phone in my bag and proceeded to get out of the car to throw something in the trash. I had to walk by the passenger side of the car to get to the trash, so I planned to throw away the trash and grab my bag out of the passenger seat. Well, out of habit, I hit the auto-lock button on the door and shut it behind me.....uhm....ooops! I locked everything in the car- my phone, my purse, my books, my keys.....the only set of keys we have since our other car was stolen a few months ago. What a day!
Birthday Boy.... Brett and I thought about having a party for Jacob's birthday, but because of busy schedules, finances and other things, we decided to have a small family gathering instead. Grandma Smith came to spend birthday time with him this weekend. She came to Wichita form Western Kansas Friday evening, spent the night, and stayed until mid-afternoon on Saturday. She really enjoyed her time playing, singing and talking with Jacob. For his birthday, Grandma Smith bought Jacob new shoes (which he really needed)! Four pairs, and they are all so cool! Thanks Grandma Smith!
While we were in KC, I took some pictures, but they didn't come out too good. Of course, I will post pictures of J regardless of quality because I am just so darn prod of my boy! Check out the latest on the Photos page!
As I said in the last update, feel free to email me (onestrongmother@yahoo.com) if you have any thoughts, questions or concerns about Jacob, I love hearing from Fighter Fans!
Have a happy and safe holiday weekend!
September 7, 2006 After an uneventful birthday (we are celebrating this weekend), Jacob woke early Tuesday morning having a seizure. One turned into two and before I knew it, his lips were gray. That's when I called 911. What threw me this time, was that the Diastat didn't stop the first seizure. I gave the second dose and the seizing stopped by the time EMS arrived. Because his color wasn't good and he needed oxygen, we went to the hospital. Ironically, one of the paramedics had helped in one of the past episodes. At the hospital, Jacob was on oxygen and IV fluids and had blood work done to check his electrolyte and medication levels. Everything looked good, so we came home. We gave J Advil for his fever, which always follows a seizure, then we all napped. Later that day, J was acting like nothing happened. What a trooper! I called the neurologist after our nap and explained the episode. The doctor tried calling that evening, but I was in the Preemie Support Group meeting and missed his call. We didn't hear from him yesterday either and couldn't call the office because their phone system is down. I sure hope we hear back today. I want to hear about the MRI and EEG results too.
On Wednesday, Jacob was feeling better so he went back to school. He had a great day! Here's hoping he stays healthy and on a routine!
September 12, 2006 Jacob's birthday celebration last weekend was a lot of fun. Joined by friends, family and neighbors, we feasted on tacos and later cake and ice cream. J didn't like digging into his cake very much, but did enjoy it when we sang happy birthday to him. He received some wonderful gifts (thanks everyone!) and had fun playing with everyone. Just hours before the party, he wasn't feeling well. He had vomited the night before and had some messy diapers so we thought for sure he'd be in bed for his party. He took a nap and woke shortly before guests arrived just as happy as could be, a very pleasant and happy surprise.
Friday evening, J's neurologist, Dr. T, finally got in touch with me to discuss his test results. After calling my phone and Brett's, he got me at work. I apologized to him for not being able to reach me. Our "home" phone is my cell and I had it off when I was at work. Brett didn't answer his phone because he was out in the yard. Good thing I had my work number listed on J's records. The test results (MRI and EEG) showed increased white matter of the occipital lobe of the brain as well as definite irritability/seizure activity in the same region. What does that mean? He has seizure activity happening in the vision part of the brain- ironic isn't it? Yesterday I took Jacob to see his retinal specialist and asked him if the seizures could be related and/or effecting his vision loss. He couldn't give me a definitive answer. He did say it is coincidental that J has been having seizures since shortly after birth, and has had ROP since then as well. I asked if getting the seizures under control would effect his vision in any way and he said it was hard to tell. I'm going to do some research on this and see if there are any similar cases out there. On another note, J's right eye, the better of the two, still looks good with its retina completely attached. The fluid that had built up in the eye has reabsorbed, also a good thing. J seemed to react to the bright light Dr. V shined in his eye, but then didn't react a second time. I told him he does that at home as well. Dr. V encouraged the use of glasses on J as much as possible. Up to this point we hadn't been putting J's glasses on, but I'm willing to do whatever I can to encourage use of whatever vision he may have. Because J is coming out of his shell developmentally, this is a great time to get back into wearing glasses regularly.
I kept J home from school yesterday because he didn't sleep at all the night before. For the last week, maybe more, he's been going to bed at a good time, then wakes at 2 or 3:00am. He'll stay up until 5:00am, sometimes later, before going back to sleep, then I have to wake him at 6:45am for school. Because he didn't fall back to sleep until almost 6:00am yesterday, I kept him home. Brett and I aren't sure why he's on this crazy schedule, but it won't last long- Mommy is exhausted and can't take it much longer!
In Mommy News... Last Friday I received a call from Rainbows United, where J goes to school, and was offered a job as a Respite Care Provider (I interviewed there about a month ago). The job is very flexible and will work with my school and hospital job schedules. I will have orientation on September 18th and begin working shortly thereafter. I'm looking forward to working for such a wonderful organization!
After over a year, I have finally update the extended Yahoo! album. I added 11 albums with over 200 pictures! Please check them out!
September 26, 2006 Oh boy, it's been busy around here! In the last couple weeks we've dealt with illness, a seizure, a rash and a bazzillion appointments. Ok, so just eight appointments (J and mom and dad), but that's still a lot.
The seizure J had this week was very mild, but stressful nonetheless, more for us than J. Brett and I handle situations like that the best way we know how, but it's always stressful because we worry for Jacob and just want the episode to pass. So far, he has pulled through well and bounces back within a few hours as if nothing happened. We are still working on getting the new med to a therapeutic level and hope to be off the Phenobarbital within a few weeks.
J has been sick off and on since his birthday. We kind of expected this when he started school. He's been stuffy, coughing, and last week, feverish. Brett and I have been giving him twice-daily breathing treatments- or more if he needs its- to keep his lungs clear. We've been able to care for his "crud" on our own, without taking him to the doctor which is a positive change from last year. We did, however, take him to the doctor this morning for another case of hives. The doc told us to give him Zyrtech until the rash is gone and he was fine to go to school. Yay for him...and us. Our "plan" when J went back to school was for me to work during the day while Brett slept, then we could spend time as a family in the evening. So far it hasn't worked out that way. J's illness and sleeping habits have been difficult and then I end up going back to sleep until mid-morning, sometimes till noon. I have faith though!
In mommy news... I have yet to start working for Rainbows. I had orientation on the 18th, but haven't been able to get to my doctor yet for a health assessment, which I have to have before I can begin working. I hope to start working early next week. In the meantime, I am getting plenty of hours at the NICU due to the high census (number of babies in the unit). Plenty meaning 15 to 20 hours per week instead of per pay period. It's been nice. Last Saturday, I had the day off and had several hours to myself, so I sat down and worked on my book proposal. It's been hard and I have let it sit for too long, but I hope that working on it a little each day will allow me to get it done soon. I really, really hope my idea hasn't already been submitted! I'll be sure to post an update when I put it in the mail.
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