Malachi had a few partial seizures this morning. We kept an extra close eye on him today since the last grand mal he had was precluded by a partial. Thankfully though, there was no grand mal.
We stayed at home all day until 7:00 p.m. when Malachi and I went to the store to get a few things. Then we had a good time staying up until 10. We watched Extreme Makeover Home Edition, talked to John's parents for a while, and then did dishes together. Those things with the grocery shopping and getting ready for bed equaled the three hours that we had to keep him up. He's been very excited about staying up late and getting up early, we'll see how excited he really is at 4:00 a.m. when John gets him.
Tomorrow's test will be very different. It's only going to be 30-40 minutes long and they want active and sentient brain activity so he will be falling asleep at some point. He also won't be so restricted. He won't be able to move around a lot, but he won't have to redo parts of his test because he moved. The Dr. should get the results from the MRI tomorrow, best case scenario is that there's no change. I don't know when he'll get results from the EEG. Last time we did a short EEG like this there was no seizure activity on the test. Even when we did the long test there was no seizure activity. So we'll see if they can find anything this time.
John missed work on Thursday and is going to miss part of the day tomorrow, but we'll bring him to work when we leave the hospital. Malachi's not going to be in school in the morning but we're going to the Valentine's Day Party at his school at 2:00. We still don't know if he'll be going to school on Tuesday. We have much to discuss.
We'll let you know how tomorrow goes.
Sunday, February 13, 2011
Simon
On Friday night, February 11, 2010, John and I headed to the hospital to begin the process of bringing our son into the world. We had been eagerly awaiting his arrival and we were so excited to know we'd be meeting him the very next day.
I had a few prayers to God about Simon's birth and every one of them was answered. My epidural wasn't as good as with Malachi's labor and delivery, but it did help a bit. The labor started on Saturday the 12th and he was born at 1:54 p.m. (EST) and weight 8 lbs. 4 oz. and was 21 inches long. He passed all of the newborn tests and was cleared to be with us. He cried a lot that first day, but was amazing to us. His blood work and eventually his skin showed that he was jaundiced. The doctors said it was because our blood types conflicted. So he spent the remainder of our time in the hospital in the UV bed getting his tan on. Unfortunately we didn't get a picture of this. He was pretty cute laying in the bed with his eye protectors on.
We were released on Sunday afternoon and went home to introduce Simon to his big brother. Our good friend Sam had watched Malachi the whole weekend and welcomed us home with a clean apartment and welcome home signs and cards for Simon.
The first few days we were definitely in our honeymoon phase. We loved our new life with our two boys. Simon didn't wake up every two hours because of the jaundice - and he had a big appetite, I couldn't keep up with it and had to supplement. I was also supplementing because the jaundice wasn't going away the way we'd hoped it would.
Finally the jaundice was gone, and so were we. Simon handled our travel to TX like a champ, sleeping the whole way on the flight from D.C. He met our friends in Dallas, and then after a couple of days in Houston for Daddy's work, he slept through another flight to Costa Rica.
He adjusted the best out of the family to our move, only showing a little bit of stress here and there when the parents were stressed out. Simon adjusted to having a nanny and a mommy who works part time (although sometimes the mommy has a hard time leaving in the morning).
He's grown and developed at a rate completely new to John and I , and was wearing his brother's 18 month clothing at 10 months (partly because he was huge, partly because of clothing shrinkage). Before that, his development (laughing, smiling, cooing, talking, rolling, sitting, etc.) seemed a bit early if not right on time. His first tooth came in at 5 months, 3 weeks, and his next tooth came in a few days later. His next two teeth didn't come in until he was eight months old, and he's slowly been teething since then. He now has eight teeth and it seems his first molar is forming and going to come in. Learning to crawl was difficult for him because of our tile and wood flooring that offered no traction. He did the army crawl for a long time and finally mastered crawling at about ten months old. Shortly after that he started to "cruise" around our furniture and now will take a couple of steps between pieces with confidence, but no more than that.
In January of 2011 Simon enjoyed his first ever vacation in Minnesota. The cold didn't seem to bother him nearly as much as it did his mother. He met his Grandpa on his mommy's side for the first time as well as many extended family members and some friends that mommy's had for many years (one friend mommy has had for almost 27 years). He really enjoyed flying and was just like his brother was at that age.
He prefers to crawl than practice walking. He's talking up a storm now, saying a ton of words in both Spanish and English: Mama, Papa, and Hola in Spanish, Hello, Hi, Mama (the difference is in the accent), Dada, Ow, Uh-oh, and possibly more.
He's had two colds and one infection (throat and ear) but otherwise has been healthy over the last year. He's a bit of an attention hog, and cries even if he's fallen just a little bit. He's certainly the baby of the family. But he's amazing, and we're so happy he's in our lives.
Simon, we love you so much. Happy Birthday (a day late).
I had a few prayers to God about Simon's birth and every one of them was answered. My epidural wasn't as good as with Malachi's labor and delivery, but it did help a bit. The labor started on Saturday the 12th and he was born at 1:54 p.m. (EST) and weight 8 lbs. 4 oz. and was 21 inches long. He passed all of the newborn tests and was cleared to be with us. He cried a lot that first day, but was amazing to us. His blood work and eventually his skin showed that he was jaundiced. The doctors said it was because our blood types conflicted. So he spent the remainder of our time in the hospital in the UV bed getting his tan on. Unfortunately we didn't get a picture of this. He was pretty cute laying in the bed with his eye protectors on.
We were released on Sunday afternoon and went home to introduce Simon to his big brother. Our good friend Sam had watched Malachi the whole weekend and welcomed us home with a clean apartment and welcome home signs and cards for Simon.
The first few days we were definitely in our honeymoon phase. We loved our new life with our two boys. Simon didn't wake up every two hours because of the jaundice - and he had a big appetite, I couldn't keep up with it and had to supplement. I was also supplementing because the jaundice wasn't going away the way we'd hoped it would.
Finally the jaundice was gone, and so were we. Simon handled our travel to TX like a champ, sleeping the whole way on the flight from D.C. He met our friends in Dallas, and then after a couple of days in Houston for Daddy's work, he slept through another flight to Costa Rica.
He adjusted the best out of the family to our move, only showing a little bit of stress here and there when the parents were stressed out. Simon adjusted to having a nanny and a mommy who works part time (although sometimes the mommy has a hard time leaving in the morning).
He's grown and developed at a rate completely new to John and I , and was wearing his brother's 18 month clothing at 10 months (partly because he was huge, partly because of clothing shrinkage). Before that, his development (laughing, smiling, cooing, talking, rolling, sitting, etc.) seemed a bit early if not right on time. His first tooth came in at 5 months, 3 weeks, and his next tooth came in a few days later. His next two teeth didn't come in until he was eight months old, and he's slowly been teething since then. He now has eight teeth and it seems his first molar is forming and going to come in. Learning to crawl was difficult for him because of our tile and wood flooring that offered no traction. He did the army crawl for a long time and finally mastered crawling at about ten months old. Shortly after that he started to "cruise" around our furniture and now will take a couple of steps between pieces with confidence, but no more than that.
In January of 2011 Simon enjoyed his first ever vacation in Minnesota. The cold didn't seem to bother him nearly as much as it did his mother. He met his Grandpa on his mommy's side for the first time as well as many extended family members and some friends that mommy's had for many years (one friend mommy has had for almost 27 years). He really enjoyed flying and was just like his brother was at that age.
He prefers to crawl than practice walking. He's talking up a storm now, saying a ton of words in both Spanish and English: Mama, Papa, and Hola in Spanish, Hello, Hi, Mama (the difference is in the accent), Dada, Ow, Uh-oh, and possibly more.
He's had two colds and one infection (throat and ear) but otherwise has been healthy over the last year. He's a bit of an attention hog, and cries even if he's fallen just a little bit. He's certainly the baby of the family. But he's amazing, and we're so happy he's in our lives.
Simon, we love you so much. Happy Birthday (a day late).
Saturday, February 12, 2011
Victory
I feel like today was a victory. As much as possible we treated Malachi like a normal five year old boy, and he was seizure free yet again. I wish I didn't react every time he trips, or makes a jerky movement but every move he makes that reminds me of a seizure makes my heart do two things, stop and then race.
John said that they decided to do the MRI with out contrast and would refund us $300 from the $800 that we paid. However, the Dr might decide we have to go back and do one with contrast anyway. I hope not because that would mean that he would need an IV and try putting a needle next to Malachi, it makes him freak out. Today during the preparation the MRI technician pulled out a syringe that had a needle to measure the sleeping medicine for Malachi. We all thought it was going to be a shot and he was crying so hard, he was so scared. He stopped as soon as he was told it was only for measurement.
My wonderful girlfriend did come sit with me, and I needed her at times. She gave me a big hug when she arrived and it was perfect, I needed it. Malachi walked out five minutes short of two hours after I left the imaging center. I was so happy to see him walking out of there, and he had his mind on one thing...food. He'd been fasting so he was so hungry. He had a snickers bar and a box of orange juice for breakfast.
Today was a pretty normal Saturday after that. We napped, hung out, went out for dinner, did a bit of shopping, ate cupcakes (the last three items will be discussed more in the next blog post which will be dedicated solely to my amazing 1 year old), Skyped with Grandma and went to bed a little late.
Tomorrow we're hoping for a chill day, and then we have more testing again on Monday.
John said that they decided to do the MRI with out contrast and would refund us $300 from the $800 that we paid. However, the Dr might decide we have to go back and do one with contrast anyway. I hope not because that would mean that he would need an IV and try putting a needle next to Malachi, it makes him freak out. Today during the preparation the MRI technician pulled out a syringe that had a needle to measure the sleeping medicine for Malachi. We all thought it was going to be a shot and he was crying so hard, he was so scared. He stopped as soon as he was told it was only for measurement.
My wonderful girlfriend did come sit with me, and I needed her at times. She gave me a big hug when she arrived and it was perfect, I needed it. Malachi walked out five minutes short of two hours after I left the imaging center. I was so happy to see him walking out of there, and he had his mind on one thing...food. He'd been fasting so he was so hungry. He had a snickers bar and a box of orange juice for breakfast.
Today was a pretty normal Saturday after that. We napped, hung out, went out for dinner, did a bit of shopping, ate cupcakes (the last three items will be discussed more in the next blog post which will be dedicated solely to my amazing 1 year old), Skyped with Grandma and went to bed a little late.
Tomorrow we're hoping for a chill day, and then we have more testing again on Monday.
The Waiting...
Malachi's MRI is going to take two hours. John's in the room with him holding his hand. I can't be there because of the pregnancy, but I don't know that I'd want to be there right now. I started crying when his head was being strapped in, the technician asked if I was ok. I had my back to him and nodded, I'm not going to cry on his shoulder. I might not have been the best patient's mom, but I wasn't all that impressed with him. In his defense he did try to calm Malachi down when he thought there was going to be a shot. Malachi just wasn't accepting it.
I'm so thankful for a good friend who is willing to come sit with me. Yesterday when talking to a (different) friend I told her that I felt like there was a lot of pressure (metaphoric) building up in me and that I felt like I could blow at any minute.It would be really bad if that happened while I was in the cafe at the hospital.
I'll let everyone know how our day goes tonight. Have a good Saturday all.
I'm so thankful for a good friend who is willing to come sit with me. Yesterday when talking to a (different) friend I told her that I felt like there was a lot of pressure (metaphoric) building up in me and that I felt like I could blow at any minute.It would be really bad if that happened while I was in the cafe at the hospital.
I'll let everyone know how our day goes tonight. Have a good Saturday all.
Friday, February 11, 2011
Keeping a 5 year old awake...
...is easy until about three hours after their bedtime. Malachi started crying he was so sad that his dad's video game wasn't over and he wasn't playing with him yet. After he calmed down and finished wiping snot all over his face he looks at me with all seriousness and says, "I'm not tired yet." It took a lot of energy not to laugh pretty hard at that.
Here's the goal for tonight, keep him up until 11:00 p.m. and wake up him at 5:00 a.m. I'm not that excited about getting up with him at 5:00 but John's taken over on the keeping him up part so I'll get to go to sleep soon.
Our activities tonight to keep him awake have been, watching The Phantom Menace, playing a game, baking cookies, and now he and John are watching Wipeout that was recorded last night. Tomorrow morning, I think cartoons will be sufficient in keeping him awake. He has to fast though so I'm going to have to sneak a breakfast in there somewhere so I don't eat in front of him. We'll leave for the hospital at about 7:30 and begin our morning of testing.
The test is two hours long, so John and I plan on looking for some wi-fi and working on our bid list. So far what I've seen is pretty encouraging. Unfortunately we can't go to Algiers though because no kids over 5 are allowed because of inadequate schooling. That surprises me though, I would think they would have great schooling. It's possible that Americans aren't allowed at their schools though.
We're deciding what our priorities are for our next post, and mine is a good school for Malachi. I've decided that while house help and working would be great, I can do without for a couple of years. If I'm not working I'm much more likely to work on finishing my bachelors in who knows what after the kids have gone to bed.
Simon's rash is 100% gone and he seems to be taking the Zithromax really well. I hear laughter downstairs which is the best sound ever.
Good night people.
Here's the goal for tonight, keep him up until 11:00 p.m. and wake up him at 5:00 a.m. I'm not that excited about getting up with him at 5:00 but John's taken over on the keeping him up part so I'll get to go to sleep soon.
Our activities tonight to keep him awake have been, watching The Phantom Menace, playing a game, baking cookies, and now he and John are watching Wipeout that was recorded last night. Tomorrow morning, I think cartoons will be sufficient in keeping him awake. He has to fast though so I'm going to have to sneak a breakfast in there somewhere so I don't eat in front of him. We'll leave for the hospital at about 7:30 and begin our morning of testing.
The test is two hours long, so John and I plan on looking for some wi-fi and working on our bid list. So far what I've seen is pretty encouraging. Unfortunately we can't go to Algiers though because no kids over 5 are allowed because of inadequate schooling. That surprises me though, I would think they would have great schooling. It's possible that Americans aren't allowed at their schools though.
We're deciding what our priorities are for our next post, and mine is a good school for Malachi. I've decided that while house help and working would be great, I can do without for a couple of years. If I'm not working I'm much more likely to work on finishing my bachelors in who knows what after the kids have gone to bed.
Simon's rash is 100% gone and he seems to be taking the Zithromax really well. I hear laughter downstairs which is the best sound ever.
Good night people.
Thursday, February 10, 2011
Seizure Free Today
Today I was on edge, but Malachi had a good day - no seizures.
When we woke up today we just chilled, Malachi woke John up at about 5:30 and I woke up at about 6:15. Simon slept in until 8:00 and we decided we should start moving for the day. John got Simon out of bed and I was taking care of Malachi. I was doing makeup in Malachi's bathroom when he was showering (it's hard for me to be too far from him right now) and I heard John say I should come look at the pattern on Simon's face. Here I thought that he laid on a stuffed animal for a long time, but when I got into our bedroom where they were I noticed the rash that was on Simon's torso last night had spread all the way up his head and his eyes were a bit puffy. We assumed that it was a reaction to the medicine he was taking for the infections.
I finished my makeup and called the Embassy nurse to inform her that the whole Roy family was coming to her office this morning because of Simon's rash and because we needed her to confirm with the neurologist what was going on today. I fed Simon a bottle, got Malachi's backpack with a snack and some homework together (felt like I was so prepared), and we left for the Embassy.
Once there the kids and I went to the Health Unit and John went to the Front Office (Ambassador, Deputy Chief of Mission and their admins), to inform the admin of the Ambassador that he might not make it on the trip this weekend that he was supposed to be control officer for. It turns out the Ambassador and DCM were in a meeting, so John went to talk to them and they were very supportive and understanding.
He joined us at the Health Unit where the nurse had agreed with what we thought about Simon and was trying to get a hold of the Pediatrician to see what he wanted to do about it. She took a look in his ears and confirmed that both of them were red and a bit swollen. The Dr. decided on Zithromax for three days - good. One problem solved.
While we were sitting in the reception area of the Health Unit, the Imaging center at CIMA called John's cell phone to make an appointment for Malachi's MRI, with contrast. We made it for Saturday morning. Throughout the day there were emails and phone calls and much confusion about what was going on. Finally John got a call from the neurologist mid-afternoon who said that we could do an EEG on Friday morning or Monday morning. They decided on Monday morning because the night before both tests he needs to stay up a couple of hours late and get up a couple of hours early. With this setup he gets to rest on Sunday.
So, in conclusion. No blood tests are going to be ordered right now, an MRI is scheduled for Saturday, and an EEG is scheduled for Monday. I need to bring Malachi's records from all of his other tests that were done a year and a half ago. I may do that tomorrow, or I just may wait until Monday since I'll need to pass the time during the EEG. Simon is doing much better, the rash is almost completely gone. Dad is sleeping happily next to me, and I'm going to turn in pretty soon.
What a crazy life we live.
When we woke up today we just chilled, Malachi woke John up at about 5:30 and I woke up at about 6:15. Simon slept in until 8:00 and we decided we should start moving for the day. John got Simon out of bed and I was taking care of Malachi. I was doing makeup in Malachi's bathroom when he was showering (it's hard for me to be too far from him right now) and I heard John say I should come look at the pattern on Simon's face. Here I thought that he laid on a stuffed animal for a long time, but when I got into our bedroom where they were I noticed the rash that was on Simon's torso last night had spread all the way up his head and his eyes were a bit puffy. We assumed that it was a reaction to the medicine he was taking for the infections.
I finished my makeup and called the Embassy nurse to inform her that the whole Roy family was coming to her office this morning because of Simon's rash and because we needed her to confirm with the neurologist what was going on today. I fed Simon a bottle, got Malachi's backpack with a snack and some homework together (felt like I was so prepared), and we left for the Embassy.
Once there the kids and I went to the Health Unit and John went to the Front Office (Ambassador, Deputy Chief of Mission and their admins), to inform the admin of the Ambassador that he might not make it on the trip this weekend that he was supposed to be control officer for. It turns out the Ambassador and DCM were in a meeting, so John went to talk to them and they were very supportive and understanding.
He joined us at the Health Unit where the nurse had agreed with what we thought about Simon and was trying to get a hold of the Pediatrician to see what he wanted to do about it. She took a look in his ears and confirmed that both of them were red and a bit swollen. The Dr. decided on Zithromax for three days - good. One problem solved.
While we were sitting in the reception area of the Health Unit, the Imaging center at CIMA called John's cell phone to make an appointment for Malachi's MRI, with contrast. We made it for Saturday morning. Throughout the day there were emails and phone calls and much confusion about what was going on. Finally John got a call from the neurologist mid-afternoon who said that we could do an EEG on Friday morning or Monday morning. They decided on Monday morning because the night before both tests he needs to stay up a couple of hours late and get up a couple of hours early. With this setup he gets to rest on Sunday.
So, in conclusion. No blood tests are going to be ordered right now, an MRI is scheduled for Saturday, and an EEG is scheduled for Monday. I need to bring Malachi's records from all of his other tests that were done a year and a half ago. I may do that tomorrow, or I just may wait until Monday since I'll need to pass the time during the EEG. Simon is doing much better, the rash is almost completely gone. Dad is sleeping happily next to me, and I'm going to turn in pretty soon.
What a crazy life we live.
Wednesday, February 9, 2011
2011 Seizure Count up by 2
Today when we picked up Malachi from his friends house after work we fell as he was trying to get into the car and when I looked back I noticed his eyes looked a little strange, and then he blinked, got up and answered our question of whether or not he was ok (he said yes).
Tonight shortly after he finished his sucker (he loves those btw Grandma and Grandpa), we were watching TV and he started making a noise. Neither John or I thought anything of it, but I glanced at him anyway and told John he was having a seizure. We got him on his side on the couch and let it run its course. It was about a minute long and even though I think it was a grand mal (now called tonic clonic) his body wasn't in it. It was just his head and face. His mouth was moving as well, and he was making a gasping like noise.
After he was done seizing he did a lot of groaning and he moved around a lot. By that I mean he got off the couch and was trying to walk. At one point he was sitting on the floor and moving forward. He certainly didn't seem alert at this time, and he continued to groan. Simon was around for all of this, and I'm sure he didn't know what to make of it. I think he wanted to play with Malachi during the seizure. Afterwards Simon still wanted to play with Malachi. Simon was grabbing hair and even was going for his eye lashes (he loves eye lashes). Malachi didn't notice because he was in the postictal state and was basically asleep.
John did get him to respond verbally to a question after he was all done moving around and had been still for a couple of minutes. We then let him go to sleep for the night. Every once in a while he would make a noise that sounds a bit like a hiccup.
John called the neurologist on his cell phone and explained the situation. The Dr said that tomorrow we need to go in in the morning and that we'll probably go see another Dr at another hospital. The first Dr., Dr. S. said we might need to add a second medicine. We'll see what testing is done tomorrow, hopefully it's not traumatic for Malachi. We'll both go to the appointment if our nanny is here before hand, I'll wait with Simon and then take a taxi if she's not.
Malachi's going to sleep with us tonight because I think it will wake John up if he starts seizing again since he usually makes noise. I think I'd sleep through it, but maybe not tonight.
We'll keep everyone updated on how he's doing tomorrow, and let y'all know what the Dr.s say.
Tonight shortly after he finished his sucker (he loves those btw Grandma and Grandpa), we were watching TV and he started making a noise. Neither John or I thought anything of it, but I glanced at him anyway and told John he was having a seizure. We got him on his side on the couch and let it run its course. It was about a minute long and even though I think it was a grand mal (now called tonic clonic) his body wasn't in it. It was just his head and face. His mouth was moving as well, and he was making a gasping like noise.
After he was done seizing he did a lot of groaning and he moved around a lot. By that I mean he got off the couch and was trying to walk. At one point he was sitting on the floor and moving forward. He certainly didn't seem alert at this time, and he continued to groan. Simon was around for all of this, and I'm sure he didn't know what to make of it. I think he wanted to play with Malachi during the seizure. Afterwards Simon still wanted to play with Malachi. Simon was grabbing hair and even was going for his eye lashes (he loves eye lashes). Malachi didn't notice because he was in the postictal state and was basically asleep.
 |
| Malachi in sleeping and John calling the neurologist. |
John called the neurologist on his cell phone and explained the situation. The Dr said that tomorrow we need to go in in the morning and that we'll probably go see another Dr at another hospital. The first Dr., Dr. S. said we might need to add a second medicine. We'll see what testing is done tomorrow, hopefully it's not traumatic for Malachi. We'll both go to the appointment if our nanny is here before hand, I'll wait with Simon and then take a taxi if she's not.
Malachi's going to sleep with us tonight because I think it will wake John up if he starts seizing again since he usually makes noise. I think I'd sleep through it, but maybe not tonight.
We'll keep everyone updated on how he's doing tomorrow, and let y'all know what the Dr.s say.
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