Matt and I took Nathan to his neurologist appointment yesterday and we actually had been assigned a different doctor. I was pretty sceptical going in to the appointment thinking it would be the same song and dance of just wait it out and see if he gets better. It was actually just the opposite.
The new doctor seemed so much more concerned then anyone we had seen so far. She asked a lot of questions about his development, if he was talking, his hearing, etc. She talked to us about how he was doing on the Kepra and was the first person to say that it was unacceptable for him to be having any seizures. When she said this I felt like we might actually get this figured out.
The doctor increased his medication to 2 ml twice daily and we are going to have him stay on it for one more week. If Nathan has any more seizures after one week the doctor will put him on Fenobarbital and do some blood work testing. The hard thing about putting Nathan on fenobarbital is that you have to monitor their blood levels and liver every couple of weeks and that means more needles, more doctors, and more tests.
Matt and I just haven't been sold on the Kepra. We think it is helping to control the seizures but its definately not preventing them. The doctor did say though that fenobarbital is extremely effective at preventing seizures and that usually kids respond well to one or the other but not both. Matt and I are both hopeful now that we are close to stopping Nathan's seizures, either by the stronger Kepra or by switching medications.
Wednesday, June 27, 2012
Thursday, June 14, 2012
MRI
Nathan had his MRI last Friday and all in all things went well. My mom came with Nathan and I and we arrived at Primary Children's at 6:00 and the nurses had Nathan sedated and began the test just before 7:30. Nathan didn't cry as much as I had expected when they put the IV into his foot and he loved the yellow and black bumblebee gauze that they wrapped around his foot.
The test only took a half hour and then they brought him into the recovery area where he slept until the nurse woke him up just before 9:30. The nurse had apple juice ready for Nathan and he was so excited and would not let the bottle go. Every so often Nathan would look over at my mom, give her a huge smile, and then go straight back to his apple juice.
Nathan was doing great so they let us go home and said Nathan would probably sleep the whole way home. Instead he played and talked to his toys the entire ride home. Aside from being drowsy and spitting up all over Brittany I couldn't believe how well he did all day. My baby was such a trooper.
Nathan hadn't had any seizures since the Saturday before the test so we were hoping that the medicine was finally working and the dosage was correct but he started having seizures again the day after his MRI. He has had them just about every day since and sometimes twice a day.
We got the MRI results back on Monday and they were completely normal which is so great and such a relief. We talked to the neurologist and for now she is going to increase his medication and hope that it is just a matter of getting him the correct dosage. Nathan has another appointment with her on June 26 to evaluate his medication and test results and see where we need to go next. In the meantime we have our fingers crossed that the increased medication will work and that we won't need anymore tests.
The test only took a half hour and then they brought him into the recovery area where he slept until the nurse woke him up just before 9:30. The nurse had apple juice ready for Nathan and he was so excited and would not let the bottle go. Every so often Nathan would look over at my mom, give her a huge smile, and then go straight back to his apple juice.
Nathan was doing great so they let us go home and said Nathan would probably sleep the whole way home. Instead he played and talked to his toys the entire ride home. Aside from being drowsy and spitting up all over Brittany I couldn't believe how well he did all day. My baby was such a trooper.
Nathan hadn't had any seizures since the Saturday before the test so we were hoping that the medicine was finally working and the dosage was correct but he started having seizures again the day after his MRI. He has had them just about every day since and sometimes twice a day.
We got the MRI results back on Monday and they were completely normal which is so great and such a relief. We talked to the neurologist and for now she is going to increase his medication and hope that it is just a matter of getting him the correct dosage. Nathan has another appointment with her on June 26 to evaluate his medication and test results and see where we need to go next. In the meantime we have our fingers crossed that the increased medication will work and that we won't need anymore tests.
Thursday, May 31, 2012
Seizures
For those of you who have been asking I thought I would write about what has been happening with Nathan. On Tuesday May 15 he had his first seizure. It was just Nathan and I at home and I was putting him in his bouncer when his whole body went limp and he could not hold up his head or move his arms or legs. His eyes were glazed over and his mouth was quivering like he was cold.
It took about a minute for him to come back around and then I called the his pediatrician who immediately thought it was a seizure. They sent us to instacare but all of his tests came back normal so they told us to take him home and watch him. He had two more seizures that week and so on Friday we called his doctor and made an appointment to see him on Monday.
He didn't have any seizures over the weekend but at the Monday appointment Doctor Ferrara gave us a referral to see a specialist at Primary Children's. But when I called to make an appointment the soonest I could take Nathan in was the end of August.
He had a seizure on Tuesday and then a horrible one on Wednesday while Shayne (Matt's mom) was watching him. The seizure lasted almost two minutes and he would stop breathing for short intervals throughout. I was so worried about him especially because they were so frequent and his doctor told me to take him to Primary Children's if I was really nervous so I went and picked up Nathan and my mom and we headed up to the emergency room.
We saw two different doctors and a few different nurses who suggested having an EEG test and a CAT scan. The EEG test was horrible, Nathan has never cried that much in his life. They attached 23 wires all over his head and then wrapped it with gauze. The test lasted 45 minutes and when they removed the wires poor Nathan had huge red sores all over his head.
After the EEG we waited several hours and then had a CAT scan done. That test was way less traumatic for Nathan and I and the test results came back good. The CAT scan showed that he had not had any trauma to his head, no bleeding, no blood clots, and no tumors. But we still didn't have any answers. They made us an appointment to meet with a neurologist that Friday and then sent us home.
Nathan had seizures on both Thursday and Friday and I was so worried and felt so helpless. My mom came with Nathan and I to the neurologist appointment where we got the EEG tests. They unfortunately came back inconclusive. When the doctor told us that I felt complete hopelessness. We had seen so many doctors and still no one knew what was wrong with my baby.
Luckily the doctor could see that I couldn't stand to be sent away again and so she made a few suggestions. She started Nathan on a low-dose seizure medication that we can gradually increase to try and control the seizures. She also requested to have an MRI to try to give us more answers.
Nathan has still been having pretty regular seizures but they seem to be much shorter, and he hasn't been going as out of it as he was. The MRI is scheduled for Friday, June 8 and I am hoping and praying that the MRI will give the doctors the information that they need to help Nathan.
The past few weeks have been so difficult and emotional for our family. The seizures have been hard on Nathan and are to the point where he will cry for hours after he has one and not let you put him down. Matt and I have both been exhausted both physically and emotionally and are trying to do whatever we can to take care of our baby and get the seizures to stop.
Even though it has been a challenge Matt and I have felt so much love and strength from our family and friends and are so grateful for the support that we have been given. I know the Lord has been watching over us and blessing us and giving us so much comfort and strength. I am so grateful to have such a sweet baby who has been a trooper through all of the testing and exams. We love Nathan so much and can't wait until the doctors figure out these seizures so that Nathan doesn't have to suffer because of them any more.
It took about a minute for him to come back around and then I called the his pediatrician who immediately thought it was a seizure. They sent us to instacare but all of his tests came back normal so they told us to take him home and watch him. He had two more seizures that week and so on Friday we called his doctor and made an appointment to see him on Monday.
He didn't have any seizures over the weekend but at the Monday appointment Doctor Ferrara gave us a referral to see a specialist at Primary Children's. But when I called to make an appointment the soonest I could take Nathan in was the end of August.
He had a seizure on Tuesday and then a horrible one on Wednesday while Shayne (Matt's mom) was watching him. The seizure lasted almost two minutes and he would stop breathing for short intervals throughout. I was so worried about him especially because they were so frequent and his doctor told me to take him to Primary Children's if I was really nervous so I went and picked up Nathan and my mom and we headed up to the emergency room.
We saw two different doctors and a few different nurses who suggested having an EEG test and a CAT scan. The EEG test was horrible, Nathan has never cried that much in his life. They attached 23 wires all over his head and then wrapped it with gauze. The test lasted 45 minutes and when they removed the wires poor Nathan had huge red sores all over his head.
After the EEG we waited several hours and then had a CAT scan done. That test was way less traumatic for Nathan and I and the test results came back good. The CAT scan showed that he had not had any trauma to his head, no bleeding, no blood clots, and no tumors. But we still didn't have any answers. They made us an appointment to meet with a neurologist that Friday and then sent us home.
Nathan had seizures on both Thursday and Friday and I was so worried and felt so helpless. My mom came with Nathan and I to the neurologist appointment where we got the EEG tests. They unfortunately came back inconclusive. When the doctor told us that I felt complete hopelessness. We had seen so many doctors and still no one knew what was wrong with my baby.
Luckily the doctor could see that I couldn't stand to be sent away again and so she made a few suggestions. She started Nathan on a low-dose seizure medication that we can gradually increase to try and control the seizures. She also requested to have an MRI to try to give us more answers.
Nathan has still been having pretty regular seizures but they seem to be much shorter, and he hasn't been going as out of it as he was. The MRI is scheduled for Friday, June 8 and I am hoping and praying that the MRI will give the doctors the information that they need to help Nathan.
The past few weeks have been so difficult and emotional for our family. The seizures have been hard on Nathan and are to the point where he will cry for hours after he has one and not let you put him down. Matt and I have both been exhausted both physically and emotionally and are trying to do whatever we can to take care of our baby and get the seizures to stop.
Even though it has been a challenge Matt and I have felt so much love and strength from our family and friends and are so grateful for the support that we have been given. I know the Lord has been watching over us and blessing us and giving us so much comfort and strength. I am so grateful to have such a sweet baby who has been a trooper through all of the testing and exams. We love Nathan so much and can't wait until the doctors figure out these seizures so that Nathan doesn't have to suffer because of them any more.
Tuesday, May 15, 2012
Topaz 2012
We left Thursday, May 3 to go on the annual camping trip to Topaz with Matt's family. It is almost a three hour drive, and Nathan was not thrilled about the idea of being in his carseat for so long. Luckily he slept most of the drive.
We arrived down at Topaz around 4 and got all of the bikes unloaded and the trailers set up.
It was pretty windy and cool, and we were all tired from the drive so we ate dinner and went to bed early. Nathan did great sleeping in the trailer, way better than we expected he would.
Nathan and his sleeping bag
The next day we woke up early thanks to Nathan and Luke. We had breakfast and then Matt and Dan left for the day to dirt bike with Matt's aunt and uncles. Shayne, Brittany, Bryce and I stayed back at camp with the babies and Annie.
Annie and her little doggie booties
View from our campsite
We cooked dutch oven for dinner that night and of course, made smores and had a campfire.
We spent most of the day hanging out at camp. We all shot guns and went for walks, and Brittany and Bryce did get out for a short ride on their bikes. Nathan and Luke had a lot of fun spending time together and always kept their eye on each other.
We let Nathan sit on Marty's little motorcycle and there is no doubt anymore about whether Nathan is a Kasteler. I think in a few years he will be begging Matt and Grandpa Dan to take him for rides on their bikes.
By Saturday afternoon Nathan and Annie were completely exhausted. They crashed together on the bed and slept the majority of the afternoon.
We ended up leaving Saturday night because we were all exhausted and ready for a good nights sleep in our own beds. But we did stop at our favorite gas station just outside Topaz to get our Farr's ice-cream! The trip was so fun and we can't wait for the next Topaz trip!
Monday, May 14, 2012
Six Months Old!
Nathan had his six month appointment on Saturday with Doctor Ferrarra. I just love his doctor! He and his nurse are so sweet with Nathan and are so good to answer all of my questions. And this appointment Matt and I had a ton of questions. I feel like Nathan has changed and grown more in the past two months than he ever has.
Nathan now weighs 17.5 pounds and is 27 1/2" inches long! He is now in the 46th percentile for his weight and 82nd percentile for his height. This is a huge improvement because he has always been in the 20th percentile for weight.
Sadly though the doctor diagnosed Nathan with eczema which he unfortunately inherited from me. The doctor said that it is probably the reason he has stopped sleeping through the night and to put hydrocortisone on his skin and especially his back every night before he goes to sleep. We also have to switch his baby lotion to cetaphil and monitor how long he is in the bath for.
Other than that the appointment went really good. His doctor said to watch out because he should start crawling in the next three months and I'm so excited I can't wait.
Nathan now weighs 17.5 pounds and is 27 1/2" inches long! He is now in the 46th percentile for his weight and 82nd percentile for his height. This is a huge improvement because he has always been in the 20th percentile for weight.
Sadly though the doctor diagnosed Nathan with eczema which he unfortunately inherited from me. The doctor said that it is probably the reason he has stopped sleeping through the night and to put hydrocortisone on his skin and especially his back every night before he goes to sleep. We also have to switch his baby lotion to cetaphil and monitor how long he is in the bath for.
Other than that the appointment went really good. His doctor said to watch out because he should start crawling in the next three months and I'm so excited I can't wait.
My Baby Can Sit!
Nathan can officially sit up on his own! He has had pretty much no interest in sitting ever unless he was sitting on your lap. Well we had his six month appointment on Saturday and the doctor said to be watching because he should start sitting up soon.
Later that afternoon I decided to put him in the sit position just to see what he would do. He looked at me strangely and then I said "Look at you! You are such a big boy!" That did it! Nathan began smiling and laughing and sat up all on his own.
He would sit up for about two minutes on his own before falling backward or sideways. Then I would put him back up sitting and he would begin laughing again and sit again! It will probably take another week or two for him to get it down completely but he is definitely on his way!
Later that afternoon I decided to put him in the sit position just to see what he would do. He looked at me strangely and then I said "Look at you! You are such a big boy!" That did it! Nathan began smiling and laughing and sat up all on his own.
He would sit up for about two minutes on his own before falling backward or sideways. Then I would put him back up sitting and he would begin laughing again and sit again! It will probably take another week or two for him to get it down completely but he is definitely on his way!
Thursday, May 10, 2012
Matt and I Are Officially Co-Workers!
Matt has decided to join in on all the fun and work at Utah Property Management Associates with me! My company posted a position a couple weeks ago and Matt decided to apply just to see. Well Matt got called back, had two rounds of interviews, and had his official first day today!
Unfortunately I work on City Creek properties and Matt will work for a PRI property but our offices will be just down the street from each other and we will still see each other around and be able to carpool!
Unfortunately I work on City Creek properties and Matt will work for a PRI property but our offices will be just down the street from each other and we will still see each other around and be able to carpool!
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