Thursday, December 1, 2005

December 2005

December 7, 2005 Is Christmas yet? I love this time of year. We have our Christmas tree up and looking good, and we plan to let Jacob open his own gifts Christmas morning. He loves tearing paper!!

On a not-so-good note, Jacob had some seizure activity early yesterday morning. Brett had him ready to leave for school when he started shaking, arching his back, and not responding to anything we did. Brett went outside when the bus arrived to tell the driver he wasn't going, while I got his medication ready (a rectal med that stops seizures). We gave him the meds and he was fine within minutes. The seizure itself lasted nearly 15 minutes. I called Jacob's neurologist's office and they want him in for blood work ASAP. They want to be sure his medication level is ok. It's been seven months since his last seizure, so we want to cover all the bases. We aren't sure if its related or not, but Monday morning at 4am, Jacob woke up vomiting and later ran a slight fever. He felt fine the rest of the day so we don't know if it is related to the seizure, or was something he ate. Hopefully the blood work will answer that. 

December 14, 2005 Oh what a week! Jacob was sick all weekend and was coughing so bad Sunday night that Brett and I took him to the minor emergency center. The doctor thought Jacob would benefit from oxygen and also thought he may have whopping cough, so he sent us to the hospital. After two nights, no meds, no IV, and little oxygen, we came home clueless. Tests for whooping cough were negative. Weird. Other than being a bit irritable and coughing ever now and then, he's feeling fine! Now its mommy's turn to be sick! I went to the doctor today and was prescribed three medications for a sinus infection! Gotta love horse pills!

Because he's been sick so much in the last few months, Brett and I have decided to keep Jacob home from school until after the holidays. Then in February, Jacob will start going to full day classes! Very long as he stays healthy!

In other news... Jacob, Brett and myself have been invited to the annual holiday banquet for Rainbows United board members. Because Jacob is their campaign kid right now, we've been asked to attend the gathering and share a few words with those in attendance. We are honored and very happy to attend, that is, as long as we are all feeling well. The banquet is schedule for tomorrow evening (12/15). Here's hoping those meds work fast! A great friend of mine will be coming with us to take photos. I will have those up as soon as I can. 

December 17, 2005 Jacob wasn't ready to be back home after all.... we had to take him back to the hospital on Thursday for rapid breathing. After many tests and one night's stay, it was determined that he had a mucus plug from the previous illness. His pediatrician also saw a little redness in his ears, so she put Jacob on an antibiotic. As another precaution, she put him on breathing treatments with a steroid to keep his lungs nice and clear. Other than sleeping a lot (which he deserves), he is doing really well. We hope these treatments and a lot of rest will get him back to his happy, healthy self. 

Unfortunately, because of my head cold and Jacob's return to the hospital, we were not able to attend the holiday gathering for Rainbows United. We are honored to have been invited and hope we have another opportunity to meet and greet the board of directors in the future.

December 23, 2005 Merry Christmas to ya! It will definitely be a merry one for us now that our Fighter is feeling better! Those antibiotics and breathing treatments got Jacob back to his old playful, happy and energetic self! Now if I could just get him back on a normal sleep schedule... 

For the holiday weekend we plan to stay home and not travel after the tough couple weeks we had. So, Christmas Eve we are welcoming Brett's parents, Bill and Reatha for an evening together (and maybe a nice dinner cooked by Brett since I don't cook...uh oh, the secret is out!). We will let Jacob open his gifts from them as well. On Christmas Day we will go to my parents house for a nice ham dinner and an exchange of gifts. I will be a wonderful time!

On behalf of Brett, Jacob, and our dog Skipper, I would like to wish you and yours a very happy and safe holiday weekend! God Bless!

December 28, 2005 I hope you had a wonderful Christmas! We had a great holiday weekend and Jacob enjoyed opening his gifts! He received lots of new toys and clothes from family and friends! And the greatest part of the weekend... Jacob was healthy and in good spirits!! I couldn't have asked for a better Christmas! 

Brett and I are working on J's sleeping habits to prepare him to return to school on January 3rd. Right now he is staying up way too late and sleeping in and napping too late. We blame the hospital stay. His schedule gets better with each day, so by next week he should be set!

Tuesday, November 1, 2005

November 2005

November 3, 2005 November already! Wow! It'll be Christmas before we know it!

Jacob is feeling a lot better. Poor kid was sick for a week! I hope now that he's been sick a few times in the last several months, his immune system is getting stronger. Not only is it tough being sick, but being sick means no school and he has been doing so well at school. I want him to be there each day to continue in his progress. And speaking of school, Jacob went with his class to a local business for Trick-or-Treating! I wasn't able to go with him, but I was told he had a great time and he came home with lots of goodies!

We have just put our order in for school pictures. Jacob came home yesterday with a proof sheet and order form! Oh he looks like such a big boy!! When I get the pictures, I will have one scanned so that I can post it on the website. 

In Mommy News....I received an email today from the Editor-in-Chief of Preemie Magazine regarding the article I wrote for their Winter 2005 issue. (for those who didn't see the Journal Update back in September, I contacted the Magazine and the Editor asked me to write an article about ROP, the eye condition Jacob has. This will be my publishing debut!) Over the coming weeks, he and I will be working together to polish the article for publication. I am very excited and thankful for this opportunity. I hope this will open doors for me. It would be great to make extra money as a freelance writer while attending school. 

If you are interested in learning more about Preemie Magazine, please visit their website at Preemie parents and professionals are eligible for free subscriptions. All others can purchase a subscription for a small fee. The magazine is published quarterly. 

November 12, 2005 Well, I thought Jacob was doing better. Last weekend he spent an entire night crying and we couldn't figure out why, that is, until I looked at his ear and saw lots of "goop." It ended up being a double ear infection. He has been on antibiotics all week. All was well until yesterday when he just started crying for no apparent reason. I tried giving him a bottle, food, a bath, took him for a drive, rocked him, held him....everything I could think of and nothing would calm him down. Finally, I gave him some Tylenol and he went to sleep. He woke up this morning in a great mood and went nuts again at Wal-Mart. Boy was that fun! I just wish I knew what was wrong and how to help him when he gets like that. 

On Thursday (11/10), Jacob went on a fieldtrip with his class to the Zoo. Brett and I met them there. We were there for just over an hour. Jacob had fun petting and feeding the animals and then he got to hear the elephants and other animals. It was a fun day out and thankfully the weather was nice!

November 21, 2005 Jacob's excessive crankiness (explained in my last entry) turned out to be constipation caused by his antibiotics. That explains why he didn't want to eat. After giving him a little help, he felt a lot better. This weekend he was cranky still, and we aren't sure why. He gets upset when we put him in his highchair to eat, or let him play on his own for too long. Brett and I are praying this is a phase and that it pass soon. 

We are still working on weaning Jacob from the bottle, as well as transitioning him from "Gerber Graduates" to table food. With his teacher working with him at school (he eats breakfast there) and Brett and I at home, we should have him there in no time! 

And speaking of school, Jacob is on a waiting list for a full day slot starting in January! Since September, Jacob has been attending a half day class (8:30am to 11:30am) five days a week. If he gets one of the opening spots, he will stay until 2:30pm. Along with his teacher and therapists, Brett and I agree that a full day would be most beneficial. It would allow him more routine, time with friends and more therapy sessions. 

And now for some cool news....Not only is Jacob a student at Rainbows United Inc., he is now their "Campaign Kid." Stephanie Harder, Director of Development at RUI, contacted me last month expressing her interest in Jacob's story. I guess his website is a big hit around the Rainbows offices. Touched by his story, Stephanie asked our permission to use Jacob as the focus of their annual "Give Hope" campaign. Of course I said yes without hesitation!! Jacob is featured on the RUI website as well as in a brochure which is then distributed to donors for their continued support. I have asked for a few copies of the brochure. If you are interested in receiving a copy, please email me. 

Visit, and be sure to disable your pop-up blocker, to see a page about Jacob!

I have added the Guest Book back to the website. I took it down some time ago due to spamming, which until now, I did not know how to block. Since I cannot reinsert past entries, I welcome you to add your thoughts!

November 22, 2005 Jacob did something amazing today! He was playing in his playpen when he reached up, grabbed the side, then pulled himself to standing position! He did it all by himself over and over again! Brett snapped a few pictures of him doing it. I'll try to have them up this evening!

November 28, 2005 Brett, Jacob, Skipper (our rat terrier) and me, hope you had a happy thanksgiving weekend! We enjoyed time off from school (Jacob and me), time off from work (Brett) and time with our families. 

The day after thanksgiving, Brett and I went out and purchased a Christmas tree and decorations. That evening, while Brett prepared dinner and Grandma Smith (who was in town from Western Kansas) played with Jacob, Meagan and I set up and decorated the tree! It was a wonderful evening! 

Jacob is famous!! The Rainbows United brochures for the Hope Campaign have been printed and distributed! We received our copies last week! They turned out great and we are so honored and excited to be a part of this years campaign!

To receive your paper or email copy, email me! You can also visit the Rainbows United website at:

Saturday, October 1, 2005

October 2005

October 3, 2005 Howdy and Happy October to ya! You know what the month of October means....Pumpkins!!! 

Jacob will be going on his first school field trip this week to a pumpkin patch! Brett and I are going along and will take some pictures! Should be a lot of fun! 

I have added some new pictures to the site with more to come soon! Our darn digital camera is still not working properly, so we have to go the long route to get pics on the computer.

October 17, 2005 It's been busy in Fighter Land! But in a good way! Jacob has been doing great at school, other than one day he was in a bad mood. It's so cool to have masterpieces for the fridge! Jacob is a great artist! 

Jacob is crawling so much now that we can't take our eyes off of him for one second or he'll be in another room! Just the other day I left him in the living room while I went into the kitchen. I came back and he had crawled down the hall into the bathroom! He's fast! He has been trying to stand up on his own lately too! That's great to see. He gets on his hands and feet and lifts his upper body. He stands for a few seconds, then falls down on his bottom. Wow! He's going to be standing and walking before we know it! It's so nice to see him finally going mobile!

For the past couple weeks, we have been trying to wean him from the bottle. We have been able to get him down to just two bottles a day, with the rest of his fluids coming from the sippy cup during meals. We hope to have him off the bottle completely within a month or two. We are taking our time and being patient with him.

Our digital camera is suddenly working again (I have no idea what happened) so I should have some new photos up soon!

October 24, 2005 We've been getting many new visitors to JTF! I would like to welcome you and thank you for checking out the site!

October 27, 2005 The last few days have been exhausting. Jacob was running a fever off and on from Monday until late last night. His temp got as high as 104- we were really worried. We didn't want to take him to the hospital unless we absolutely had to, so we did all we could to get his fever down at home. Cool baths, cold compresses, even a few minutes outside in the cool air. Of course we gave him Tylenol every 4 to 6 hours as well. I called his pediatrician's office and spoke with a nurse on Tuesday. She said a virus has been going around with symptoms similar to Jacobs. She told me to keep with what we were doing and call if things got any worse. Although his fever has been gone for several hours, I may take him in to get checked out today.

What I worry about the most when Jacob is sick, is that he refuses to eat or drink. I catch him at the right moment though, and force down some apple sauce or juice...anything to keep him from getting dehydrated. Last night I had to wake Brett up to see if he could get J to drink some Pedialyte from a bottle. He wouldn't take it from me. Luckily he did from Brett. We suspect this is all due to a virus or maybe teething. He has some molars coming in. 

In Mom news... Three nights ago I was on my laptop condensing all the journal entries into one file on my computer. I had entries from October 2003 to the present. Well, last night I went to open the file to edit and it wasn't there. Gone. Deleted. Poof! I think I accidentally deleted the wrong file after I condensed. So, I have lost all journal entries from May 2005 to September 2005 (I have a file on the other computer with entries up to August 2005). Needless to say I am very upset about this as I have been saving all my entries since shortly after J's website debuted. I guess I shouldn't be too depressed since it's my own fault for not making a backup disk. Oh well. I learned my lesson. 

If by chance, anyone has been saving journal entries, please let me know! Thanks!

Please check out new pictures on the photo album page!

Wednesday, June 1, 2005

June 2005

June 3, 2005 Hey Fighter Fans! Hope you have had a good week! On Monday, Memorial Day, Brett and I took Jacob to my parents house for a BBQ dinner. Before dinner we sat Jacob in the grass, something he hated the first time. He was fussy at first, then seamed ok with it. After a few minutes we tried putting him on his tummy, he didn't like that at all. He looked like Superman with his legs and arms off the ground- anything to keep from letting his skin touch the grass!

On Tuesday, one of Jacob's therapists came over and brought with her a neat indoor swing. It consists of a net suspended from a bar in a doorway. See the pictures in the Photo Gallery. Jacob really enjoys it and fell right to sleep the first time!

Thursday morning aunt Meagan and I took Jacob to the YMCA for swimming! Rainbows United, the organization that provides Jacob's in-home therapy, has teamed with the Y for free swimming twice a month. Due to being sick, having seizures and mommy/daddy being sick, we haven't been able to take him until now. It was a lot of fun! Jacob cried a little but did well overall. Check out the pictures on the Photo Gallery. 

I am still waiting for my new software to arrive. For some reason it is taking a little longer than I expected. When it comes, I will have fun redesigning JTF!

June 8, 2005 My new web design software arrived this week and I plan to start building a brand new JTF this weekend! I would start right away, but homework comes first and due to summer consisting of a full semester crunched into two months, I am already loaded with work! 

Today Jacob went to a Rainbows United remote site to work with his Occupational Therapist (who normally comes to our home). Jacob walked on a treadmill supported by a harness. At first he was irritable, but he grew to enjoy the walking. I snapped a few pictures, but due to the movement, they cam out very blurry. We will take Jacob back to work on the treadmill at least twice a month, or when the treadmill is available for use. 

Lately Jacob is standing a lot more, crawling forward with a little help and also copies sounds he hears. It's really nice to see him blossom.

June 13, 2005 Our Fighter isn't feeling so good today. He has a stuffy nose and is drooling a lot so I think he is teething again. Because he didn't sleep well last night, I canceled his therapy visit for today. I'm keeping him rested and medicated so he should be feeling ok real soon.

The new site design is coming along well. I work on it off and on when I have time, aside from Jacob and homework of course! It should be done soon! I will keep the updates coming!

June 18, 2005 Happy Fathers Day Weekend to you!! Jacob (and the rest of the family) is feeling much better! Turns out he had a cold and it wasn't teething as I first thought. Actually, it could have been a combination of both! In my last post I mentioned having to cancel his therapy session for last Monday. Well, I had to cancel Thursday as well because we still weren't feeling too well. We don't want to spread germs!

I anticipate the re-designed site will be up in the next week or so. If I could dedicate an entire day to its design, it would be completed much sooner. Thanks for your patients! I know you will love the new look!

Sunday, May 1, 2005

May 2005

May 6, 2005 Forgive me for not getting the site updated sooner, this week had me busy with term papers and finals! It will be nice to have a three week break before the summer semester starts! 

It's been a good week for the Fighter! He's been feeling well and is really starting to show his personality. What I once took as irritability from teething is actually a Fighter Fit! He could very well be teething, but as time has passed, Brett and I see more and more how his true colors are coming out! It is so cool to see him react to certain things. He is making more sounds along with the "mama," like, "baba" and lots of singing and grunting! So cute! We are still working with him on walking and crawling and although he can be stubborn at times, he is doing well with both. I am very happy to report that since the seizure medication was increased, he hasn't had any seizures (knock on wood)! We look forward to the weather staying nice so we can get him outside to play! We plan to take him to the Sedgwick County Zoo, the park, and when I start gardening, he can play in his playpen! 

May 12, 2005 Wow! Over 40 Saving Babies bracelets have been sold through JTF so far! That's an additional $20 that we are going to donate to March of Dimes! Thanks so much!

Early Saturday morning, Jacob had another mild seizure. I called his neurologist's office Monday. Dr. S ordered a Phenobarbital level check and wants to see him this week. Yesterday I took J to his Pediatrician's office to have the lab drawn, but a communication error left us sitting for over an hour without the proper orders. We left and will go back today. Hopefully the lab results will be complete in time for J's appointment with Dr. S tomorrow. I am going to ask him what other tests can be done to determine what the problem is. The medication has helped, but for J to have episodes every few weeks, it is obviously not enough.

I haven't taken any new pictures of Jacob, or anyone else for that matter, due to how hectic things have been the past two weeks. Don't worry, with the weather becoming nicer we will get J out in his swing, to the park, the zoo and take tons-o-new-pics!

May 17, 2005 I hope everyone had a great weekend! Ours was busy, but really fun!

Last Wednesday Jacob had an appointment with his retina doctor who, upon examination, found that the fluid in his right eye (the better eye) has decreased! Dr V. said that the decrease may or may not effect his vision, but he is hopeful. With the condition of his eye, he expects that Jacob is seeing light and shapes/shadows. His left eye remains unchanged with low probability of vision (something we have known for a long time). He doesn't feel surgery is needed right now and wants to see him again in three months. 

Last Thursday Jacob went to see his Neurologist about the breakthrough seizures. She explained to me that each child is different when taking Phenobarbital. Some need to be at a higher level then others to keep the seizures at bay. She said that since Jacob's seizures have decreased in severity, he is on his way to a therapeutic level. She has increased his dose and will check his levels again in two weeks. She hopes this will stop the seizures. If not, she will consider an alternative medication. Phenobarb is always the first choice due to its low occurrence of side effects. 

Saturday afternoon my grandparents arrived from Texas and my great aunt and uncle from Colorado. They came to town for the weekend for my sister Meagan's high school graduation. We had a lot of fun spending time together and on Sunday attending Meagan's graduation. After the graduation we had a great BBQ with family and friends. We are all so proud of Meagan! Also, Jacob had lots of attention from everyone, allowing Brett and I to have a short break!

May 23, 2005 Other than feeling crabby from teething, Jacob has had a good week. He woke last Thursday with a fever and had one this morning as well. We think he has molars coming in, poor kid! As you can see from the home page, Jacob had some fun a few nights ago munching on an Oreo cookie! What a mess! Good thing it was bath night!

I hope everyone has had a chance to look at the new albums on Yahoo! I apologize for not updating it sooner. Since all of Jacob's pictures are digital, I have begun ordering prints from the vast number of albums. Last week I ordered double prints of the first 12 albums. I will order more every couple weeks until I have prints of them all. I would like to put together a scrapbook (or two or three) of his photos, as well as all of the emails, cards and letters we have received since his birth almost two years ago. Right now I have all of his "stuff" in a box in his bedroom. I'd like to get it out and show it off!

May 27, 2005 It's been a pretty good week in Fighter Land. Other than a couple of days of irritability and a fever due to teething, Jacob has been doing great! He did not have any doctors appointments (surprised? I was!) but he did have two therapy sessions. His therapist's continue to be pleased with his progress, although they do want to see him doing more in the next year. We do too! We hope to see him walking soon and talking more! 

Coming soon....a whole new look for the website! I recently purchased new software and will reconstruct the website giving it a fun new look and a hit counter that works! Yay! :) Since I will be making the new site on my laptop, the interruption should only last a short time! I will post a note before that takes place!

Have a great Memorial Day weekend!

Friday, April 1, 2005

April 2005

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!

Tuesday, February 1, 2005

February 2005

February 1, 2005 I am in the process of giving 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!

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 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.